Meningiomaheadstart

Another Rant: We're getting too complacent about terrible injustices to UK's vulnerable.

2015-02-14T21:42:00.002+00:00

Please tell me this isn't so! Apparently Ian Duncan Smith says those with degenerative diseases eg MS, Parkinsons's Disease etc are 'curable' and fit to work in the future. An Orwellian nightmare is occurring right under our noses and no one seems to give a monkeys because we're all too busy looking to see if someone is getting more than us!!!!

How have we, as a nation, allowed ourselves to become so complacent and let those most vulnerable in our society become targets escapes me! I'm glad when I fill out a form now that says 'United Kingdom' rather than 'Great Britain' because the 'Great' has long disappeared I'm afraid, because we are all being played as fools and allowing it to happen! We *are* fools because we have allowed ourselves to become manipulated in to thinking the vulnerable are somehow robbing everyone else, that immigrants are taking our jobs, Europe is about to invade us and whatnot! Well going to do the shouty caps again and rant:

GET YOUR HEADS OUT OF YOUR BACKSIDES!!!! NO, YOU *CAN'T* TELL BY JUST LOOKING WHO IS 'SPONGING FROM THE STATE' OR WHO IS TRULY ILL/DISABLED!!! 99.9 % OF IMMIGRANTS ARE HARD WORKING AND CONTRIBUTE ONE HELLUVA LOT TO OUR SOCIETY!!!! STOP BEING ARMCHAIR COMMENTATORS AND JUDGES OF PEOPLE YOU DON'T EVEN KNOW AND STOP THIS BLOODY MADNESS!! PEOPLE ARE *DYING* OUT THERE BECAUSE THEY HAVE *DARED* TO BECOME ILL/VULNERABLE!! WHY HAVE WE LET THIS HAPPEN!!!!

WHEN DID WE LOSE OUR COMPASSION? MY HEART IS BROKEN FOR ALL THE SUFFERING THAT IS HAPPENING NOW AND WILL INCREASE IN THE FUTURE. THIS IS DEFINITELY EUTHANASIA BY STEALTH AND ECONOMICS!

Ian Duncan Smith - thousands with degenerative conditions classified as fit to work in future, despite no possibility of improvement.

A Little Rant from Facebook - No, It's Not Just My Age!

2015-01-24T00:16:00.000+00:00

On Facebook, one comes across pictures with pearls of wisdom on them. One made me think on the difficulty of putting across the problems faced by brain tumour sufferers, and those with other illnesses where it's not apparent the person is ill or even looks ill. I had this problem recently talking about the fact a side affect of treatment and for me, an acceptable risk in the hope of stopping Algy from growing.

My main problem is the fact my memory has been affected and the constant forgetting where I've put something seconds after leaving it and such not, has become a huge frustration.

It's not obvious as when I go out and get chatting, things are ok but often I find it difficult to remember names etc and know this isn't down to my age as the deterioration has occurred after my radiotherapy. It's not massively bad but the brain does age faster after radiotherapy and there is a small risk of dementia, since I have a family member who has Alzheimer's, the fear of getting this is always in the back of my mind.

So what you ask, everyone has that. Well, please read the following and the meme that prompted this I've uploaded at the end. This is not so much about my problem but an example of what so many try to get others to understand, and find that very few really want to.

Comments welcome as always either here or at twitter where I am @braintumourlady.

***************************************************

Facebook entry - 23rd January 2015.

"This reflects what most most people with a brain tumour would want to say about theirs, so I'm going to say it about mine. I have had a *very* hard time putting this across!! I *hate* it when people tell me 'it's only your age' etc. Well, here's some blunt info in caps.

IN REGARDS TO MY SHORT TERM MEMORY AND COGNITION.

NO IT'S NOT 'JUST MY AGE AND THAT EVERYONE HAS IT'!!

I HAVE A FRAKKIN' LUMP IN MY HEAD THAT SHOULD NOT BE THERE AND IS STILL DAMAGING THE BRAIN TISSUE AROUND IT!! I HAVE HAD RADIOTHERAPY TO STOP THE FRELLIN' THING FROM GETTING BIGGER AND A SIDE EFFECT OF THAT *IS* DAMAGE TO COGNITION AND MEMORY. I GET TIRED, I CAN'T ALWAYS THINK OR REASON, AND CAN BE EMOTIONALLY FRAGILE AT TIMES.

I CAN'T ALWAYS REMEMBER AND CANNOT ALWAYS TOLERATE CROWDED PLACES. I HAVE NO IDEA IF THIS WILL GET WORSE, BUT I DO KNOW IT ISN'T GOING TO GET BETTER. THE TREATMENT IS ONLY A DOORSTOP, NOT A CURE! AND YES, I KNOW I AM AGING BUT THIS IS SOMETHING ELSE ENTIRELY DIFFERENT AND *NOT* RELATED TO MY AGE!!

PLEASE DON'T PATRONIZE ME WITH YOUR OPINION THAT 'EVERYBODY GETS IT' OR TRY MISGUIDED ATTEMPTS AT OPTIMISM. INSTEAD *LISTEN* TO WHAT I AM TELLING YOU!! I DON'T WANT YOU TO FEEL SORRY FOR, OR PITY ME, OR CALL ME A HERO. ALL I WANT IS YOUR UNDERSTANDING PLUS VERY OCCASIONALLY YOUR PATIENCE AND HELP!

END OF!!

That clear enough folks?"

Happy New Year and All That...

2015-01-16T16:52:00.001+00:00

Mega apologies for taking time with this post. Well had a quiet December waiting for my right elbow to heal but due to the kindness of friends & family, did have a little treatette last week after going up to London to see Ben Miller in a play reading by Bruce McKay about a 16th Century Priest called Bartolome De Las Casas. This chap had realized the very cruel treatment of the indigenous peoples of Mexico and the Caribean by the Spanish invaders was simply not on. He did his best to fight for the rights of the local natives, eventually setting up his own Dominican order to serve those affected. Cutting a very long story short,

De Las Casas in effect was the first known human rights campaigner. He made mistakes along the way, but learned from them. My personal feeling is that he was very lucky not to be tried for heresy as one of the ideas he put forward went against the idea that such genocide and slavery of the indigenous people had no souls.

The event was a fund raiser for the charity Survival and also for the collections library of the Middle Temple Hall where rare books are preserved. of which one is by De Las Casas. The play itself, held in the Middle Temple Hall was funny but also moving and very thought provoking. Apparently there are many indigenous people who have not had any contact with the outside world as yet. Many who who were at the event, as I do, hope it never happens as the locals never seem to come off well but with the ever expanding need for land etc, it will happen sooner or later. Survival aims to help indigenous tribes to have and maintain their autonomy for both their land and heritage.

Survival's aim is a great one, but it makes me think of the autonomy and rights of those of us who are disabled, long term ill/injured and generally vulnerable in many ways, find our rights and autonomy have been gradually eroded for the sake of 'autonomy'. Now, I am very lucky in the fact all I need is a stick and care with what I do to function plus a small pension which covers my mortgage, but for many things like access, care, finance etc are hard to maintain with the increase in the cost of living. It now can take between 4 to 26 weeks for decisions about benefits including Employment Support Allowance (formally Incapacity Benefit) and Disability Living allowance, both soon to become Universal Credit and Personal Independence Payment. The problem, especially with he last one, having looked at the descriptors, which looks more at the effect the ailment has on day to day living, some do not take in to account conditions do fluctuate.

Now, yes of course, there has to be a check to make sure applicants are genuine, but considering fraud rates about 1% (ok that's 1% too many), the 'checking system' has turned into a ruthless effort to ensure as few as possible who are entitled and need benefits and help just don't get it. For a disabled person to have to wait up to six months for DLA/PIP is nothing short of ridiculous and cruel. I'm still waiting for mine and got my local MP, Andrew George on the case but all he can do is inquire about it. The letter got back was that my application came in very late and was not received by that particular department (for renewals) until August as opposed to May.

What actually happened was that it was sent in on time but somehow ended up in the 'wrong department' before being sent to the right one, despite frequent phone calls from my advocate (the letter incorrectly stated I had phoned as well), and that the people Andrew spoke to said they could not influence the time it will take for a decision to be made, even though it had already been three months since they receive the application. Oh yes they can! There are those whose MPs have inquired and/or did more and who deservedly managed to get their constituents their benefits asap! It has been 8 months now and I can see what will happen is, time will go on for so long I will be forced to reapply again which will mean another 26 weeks minimum to wait. I have pretty much given up now and realize that I won't get DLA and PIP no matter how much I need it .

So, why do we have to jump through so many hoops now? For me it is more a matter of finances because the cost of living has gone up so much it is getting more difficult to pay the bills, as well has having to pay for transport for treatment etc. For others it will be more as carers have to be paid for, taxis needed because not all areas have buses with wheelchair access and so forth. it is definitely a case now of 'Please Sir, I need some more' and like the unfortunate Oliver Twist, we are hauled off for daring to ask for what is ours anyway, and made to be examples of those who are 'stretching the economy and what have you. For the last 15 years, both Labour and Conservatives (and sadly the LibDems whom I used to support but not now) have started to erode social care due to 'costs'.

A society is often judged on how it treats it's most vulnerable citizens and the UK far from being the 'easy touch' the right wing press would have it to be in terms of social welfare, it has become the exact opposite I think. Social and health care continues to be eroded from under our feet and those who find themselves out of work, ill, disabled, in poor social circumstances are being subjected to ever increasing barriers. I even get paranoid enough to think there's a 'euthanasia by stealth' that those who are entitled to claim or who are being forced in a never ending appeals process, so they don't bother to reapply as the stress is too much or will die before the claim is processed, thereby conveniently reducing the claimant numbers by 'natural wastage'.

Then there are the suicides. Yes, folks, be assured that there are more suicides being reported because those who have been driven to despair with having to deal with Job Centre Plus or the Department of Work and Pensions, who are ill or dying but being found to have the capacity to work, or being sanctioned to for not attending meetings, when they have not been informed in the first place finally can take no more, as well as the time it takes for a claim to be processed. So to those who are moaning about us 'sponging scroungers' be assured again we're beginning to die off now so will save you money.

Yes, we do have a better life in the UK than in most countries but for her vulnerable citizens, that is changing. I am beginning to wish we had Bartolome De Las Casa to speak for us.

Being Punished by the DWP for Being Disabled

2014-11-21T20:38:00.000+00:00

After such a lovely day yesterday attending the University of Plymouth Centre of Excellence launch, sadly I've hit rock bottom today with the realisation it has been SIX MONTHS, I repeat SIX MONTHS since I last had a Disability Living Allowance (DLA) payment and also sent in my renewal form.

Let me repeat the time span again, and I hope my MP Andrew George is listening as I have contacted him privately, also via Twitter and Facebook, SIX MONTHS for a benefit I am entitled to. The excuse from the Department of Work and Pensions (DWP), is that the application was 'put on the wrong pile' which was for applications for the new Personal Independence Payment (PIP) benefit which is replacing DLA and I am supposed to be assessed for *next* year! They still cannot decide whether the renewal form can be used for a PIP application or not. I have an advocate who has tried her best but there is *still* no answer from the DWP about it.

I am 54 (or will be on Sunday) as most of you know, I have an inoperable brain tumour and will not be getting better. I don't know what else to do and would ask the same question that that tens of thousands of us who find ourselves in this situation right now, why am I being punished for something that isn't my fault?

It's bad enough to feel most days - at best - useless and a burden to society with added worries about bills etc. Plus I want to live as full as a life as possible, to contribute where and when I can which is actually a basic human right, according to the Equality Act of 2010! This does not fill me with a great deal of confidence about the Employment Support Allowance I currently receive but will have to be assessed for next year. In this case I will be assessed for my 'capacity' to work, not as to whether I am actually fit to be employed or not.

So I will ask again, WHY AM I AND THOUSANDS OF OTHERS BEING PUNISHED FOR BEING DISABLED/ILL! WHY AFTER SIX MONTHS IS THE DWP DRAGGING IT'S FEET WITH NO IDEA IF/WHEN I MIGHT GET DLA/PIP! SOME OF US (AND THIS COULD INCLUDE ME AT SOME POINT) DO NOT HAVE THE LIFE SPAN LEFT TO WAIT! WHY AM I HAVING TO RELY ON FAMILY AND FRIENDS FOR FINANCIAL SUPPORT WHEN 32 YEARS OF FULL TIME NATIONAL INSURANCE PAYMENTS AND PAYING IN TO AN OCCUPATIONAL PENSION SHOULD BE DOING THAT!!!

...answers on a postcard please.

Of Lobbying and Pythons

2014-07-24T20:09:00.000+01:00

Been a little while since I’ve posted so it’s about time I knuckled down and did another one!

I have been on my adventures with visiting Parliament again, this time with the Brain Tumour Charity and Brain Tumour Research to lobby an all-party parliamentary committee about research funding. The aim was to plead the case that funding for brain tumour research is woefully short of what is needed, and the importance of ongoing research looking at viable treatments, tumour types, aetiology etc. The case was put by experts working in the field, including Dr Nathan Richardson, Head of Molecular and Cellular Medicine at the Medical Research Council and Professor Sebastian Bradner, Professor and Chair of Neuropathology at University College London and what they got back, I feel, was a load of old flannel about the issue.

My memory is letting me down as I write because I cannot for the life of me remember who the government lackey was to respond and we were also joined by the Rt. Hon David Millets MP who is the Minister for Universities and Science. There has to be a quorum of MP’s to oversee these meetings (3) for the first 35 minutes at least. Anyway, cutting a very long story short, the bods made a solid point about funding for brain tumour being about £3.5 million (which wouldn’t even so much as get you a garden shed in certain parts of London) compared with other cancer research programmes receiving about 10 times as much.

The problem seems to stem from the fact the application for research funding (which is also in part looked at by the pharmaceutical companies) is a very difficult process with so many trying to get a share of a small pot. Usually charitable donations are matched by the govt but we don’t even come up on quite a few people’s radar for that sort of thing. Whilst it is true that Breast Cancer, Leukaemia, bowel cancer, oesophageal cancer etc are more common, it was restated that malignant brain tumours are still one of the biggest killers for the under 40’s and the huge differences between paediatric tumours and adult ones and can vary in type and effect.

The fact is, with the greatest respect, the others have only one or two cell types to research, but with the brain there’s over 120! The other problem (and this was a big issue with diseases such as Parkinson’s) is something called the blood brain barrier, which is a natural protection of the brain where certain toxins are blocked from entering the brain and spinal cord. The problem is that a lot of chemotherapy is affected by this and part of the problem is finding more effective treatment. The cells themselves cause problems, such as there’s one hell of difference between say my type of tumour, where it arises out of the meninges, the inner layer of three membranes that surround the brain and spinal cord, to a glial cell in the brain matter itself. There are other factors to consider such as age, impact on other parts of the brain and the body, damage, toxicity and side effects which for most, comes on top of having surgery and radiotherapy.

But even so, part of the flannel we got back was how we would benefit from results of other cancer research which is also true, to a point but still that does not cover the unique nature of the brain and anything that affects its cell growth, type and function. Even with my slow growing Algy, the fact alone tumours form in an encapsulated space is a huge danger in itself with the resulting damage to surrounding tissue and even though the word ‘benign cancer’ which is used, is meant to reassure the patient, it is still a cancer by location.

There were so many points raised but I wonder if the Government use put off tactics to discourage applicants? Certainly the Govt representative was very repetitive with his answers so no assurances were made and came across to be as being a little dismissive, but they would look into the matter.

What puzzles me in Parliament, several MP’s have had family members and others suffer brain tumours, and of course there was the greatest politician in my eyes, Mo Mowlem, who even with her terminal brain tumour, managed to bring much needed resolutions to the political problems in Northern Ireland. Surely in her memory there could be a greater political sympathy that could honour her achievements. I was going to raise that point, but didn’t as that’s a whole different issue.

Summary of Points:

Research needs to increase to look at the processes of cell mutation and causes. More support needed from other charities out in the cancer field to support our own with fund raising.

Need to look at the chemical interactions of Chemo and how this can affect any future treatment.

It is acknowledge that there is a high attrition rate for funding applications, but it is felt applications for brain tumour research are probably being deliberately overlooked in favour of other applicants.

We understand that a robust case has to be presented for research and what could be useable result. Is there going to be any immediate benefits? I.e. what’s in it for us and can we make money out of it!

My own personal opinion is that we really could do with more clout politically and in general. The cases put were on the spot and people are dying as a result of lack of knowledge and I have to say lack of awareness, which was brought up in another meeting and to be looked at again in September. I think also because we are rather in the minority we are going to lose out to the bigger charities such as Cancer Research UK who do *not* have our best interests at heart, but smaller charities involved with brain tumours are doing a sterling job but we need more.

I still have a huge problem with the statements brain tumours are rare but a large cancer killer none the lass. It doesn’t seem logical to me, you can’t have both so would like to see more robust statistics with that. I know of at least of 9 people in Penzance who have tumours, some sadly dead and a couple incapacitated. In this last week I have passed on details of the Brain Tumour Support group to a person about to undergo surgery and a 19 year old man who has just been diagnosed.

Also our local MP, Andrew George’s brother had one. These in particular I am going to follow up on because I know what it’s like to go through the processes and come out with arms flapping, not knowing what the hell to do next. The clout needs to be across the board and influential as well as from local groups. Also it is my personal opinion,that the brain tumour community need to be more cohesive as a united front as numbers do count.

One of the Brain Tumour Charity’s patrons is actress comedian Dawn French, with our group one of our patros is actress Tracy Childs who nursed her husband singer Tony Anholt who died from his. We could do with more media and entertainment support, more political support. There is already international support with the International Brain Tumour Alliance and various academic and research institutions but still more cash and awareness is needed which is why personally I’m putting my big mouth to use and shouting very loudly about this.

We.Need.Your.Help.And.Support.

End of!

You can read the report presented to Parliament by Brain Tumour Research here:

http://www.braintumourresearch.org/uploads/document/APPGJuly1releasefinal_3332.pdf

Other bits.

There is a campaign called ‘Head Smart’ to raise awareness about brain tumours in children and they have produced leaflets to Pass on to schools, libraries, etc. They are also asking for support from local MP’s to encourage this campaign to be taken into the communities. We also need one for adults as well and this is being looked at I think and should come up in the next APPG meeting.

I am still trying to get info for my book about other people’s experiences with brain tumours, and have sent out 19 questionnaires but so far had three back plus one eventual refusal because the email attachment apparently was infected with malware, but I did not know this until I contacted the person concerned. So please, please, please if you have one, fill out the bits you want to share and send it back soon. If there are *any* problems, please let me know as I can’t help otherwise. I want my book not just to be about my story but yours as well, to be a voice and I can’t do that without your help.

My condition remains ‘stable’ except I have put back on a lot of weight – 30 lbs - by falling off the wagon so to speak, but have also had bloods taken for hormones and endocrine stuff, as it is possible my pituitary gland maybe affected, plus there is the ‘milestone’ (no pun intended) of now having that great indicator of middle age, gallstones! I have an appointment on the 14^th August so I can be referred for an op to remove my gall bladder. Joy. Not!

Philosophy with The Bruce Academy at the O2.

But despite there being improvements such as my seizures not being so intense or frequent, my memory has got a lot worse and I am also getting very clumsy again. Not so much with falls this time but with knocking things over, dropping and not being able to organise myself so well. In the last couple of days, I sent a display of books flying off a shelf in Waterstones in their Piccadilly store, dropped a suitcase on my foot, can’t seem to eat snacks or food without wearing most of it. I feel it too and can’t seem to control it with things being dropped, etc and to me there is some cognitive impairment. It can also be a sign of middle age and menopause but the radiotherapy will have brought these on as it can age the brain, add in to that my mum has Alzheimer’s Disease now, that’s one possibility of my future I’m not really relishing if I get that far.

My finances are in the crapper but you know what, I don’t care about that much to be honest. So long as the bills get paid and we still have a roof over our heads plus cat food for Sizzle, we’ll get by. In a way I’m having a ball, with trips to London to see our dear Ben Miller in various shows, twice with his comedy partner Alexander Armstrong that was fantastic, lobbying Parliament (which makes me feel *so* important…LOL!) helping out with a support group, advocating for a friend, steam rallies (yep it’s that time of year again!). Out comes the tent, willies, sunscreen, mozzie killer and Dave’s fabulous steam models! Plus my crochet to keep me going while I supervise the model and Dave goes off to the beer tent…LOL!!

I’m on the train now (stuck as usual due to signals) back home after seeing the last Monty Python live show ever, and tomorrow, sadly have a funeral to attend. I know I am going to be shattered next week as when I get too active I tend to hit a brick wall, get very down and exhausted very quickly as fatigue is a part of this. I do tend to push myself even now but it’s just I have a chance to live a life that before was ruled by shifts and protocol, but I also have to accept and deal with the consequences of that.

And of course, there’s David to consider as well.

We’ve been together for 27 years now, nearly 23 of those married and I’m coming to realise how I much I do take him for granted sometimes. He’s a quiet but solid man who allows me a lot of freedom with my wanderlust and has always been that way. I want him to be more independent too as we’re both getting older with more medical problems that could keep a student doctor going for a few weeks.

It’s true to say there are less days ahead of us than behind, and I know there will be a point where one or both of us will be incapacitated. Which brings me on to another, perhaps, less cheerful point – getting one’s affairs in order so I am going to encourage him to make a will (I already have done this for myself) and the two of us to draw up enduring power of attorney for the other. I've seen all too often the difficulties that occur when this hasn't been sorted and the resulting legal hassles can take months, if not years to sort out. Even though I’m up to my eyeballs in overdrafts etc, dead I am worth a bit which can pay off the mortgage.

My biggest fear is David not having a roof over *his* head. That has worried me more since the start, more than even having a permanent guest inside my skull. I want to spare him as much as I possibly can, the legal hassles from bereavement, as if I pop my clogs before he does, he’ll have enough to contend with as it is. I want to know he will be cared for when I gone until, as is my spiritual belief, we can meet again in the afterlife.

But still I am also going to make sure we have fun and live a bit. Dave’s coming round to the idea of getting out more rather than just end up in a town pub. We’re both involved with The Ritz and will be until it is handed over to its new owner in a year or so. So really life ain't so bad for the minute, for which I am very, very grateful.

As the song says "Always Look on The Bright Side of Life", so I will do my very best to do that.

Anyone for an Ex-Parrot? A Norwegian Blue one...?

Positive Writing Vs Honest Writing

2014-06-17T18:29:00.001+01:00

As most of you are becoming aware by now, my muse for writing keeps getting up and walking out of the door, which ain't good if one has decided to write a book! Anyway, before launching into this entry's main topic, I'll bring you up to date on my adventures.

I seem to be spending quite a bit of time commuting to London, much to the detriment of my overdraft and will have to pull back on that soon a) because we need to eat and b) because the bank is earning too much interest. But I am going up again Friday to see Ben Miller and his long time comedy partner Alexander Armstrong at a do in Kensington. I have seen our dear Ben a number of times this year, not just on seeing the Duck House but also at a masterclass and The Royal Albert Hall. Poor man must think I am stalking him!

The masterclass was at the Theatre Royal Haymarket just off Piccadilly and an *absolute* treasure. Ben used his experiences learned through his career to give invaluable advice to aspiring actors. Also he gave a very excellent answer to my question about his writing style and routine. This was a gem to me because I found out it's ok to have blank days and a nap counts as writing! But also what came across was to stick to a routine no matter what, with Ben introducing the concept of the '50 minute hour'. That is to write or give 50 minutes of writing time (whether any words appear or not) then take a 10 minute break. Ben usually works from 10am to 4pm on his writing days, and also takes about an hour for lunch. He also advises going for a walk at the end of the day's writing, taking a note book (he uses his iphone) to jot ideas, as that is the time you will likely be most inspired.

Brief video of Ben's experience at his masterclass click on this to see on YouTube.

Now I may not be up to a 6 hour writing day but certainly with the '50 minute hour' where you also use a timer or set an alarm for the hour - I have managed to get a lot more done although progress remains a little slow, because of variable energy and the fact my concentration isn't quite as good as it was. Ben also advised that when the alarm goes off, you stop writing, no matter what and take that break or finish for the day and also, when you decide you want to change everything, it's probably likely your work is complete.

By 'eck I was an 'ansum maid back in 1978 :)

So with dragging my muse back online (I also have a fanfic series I am seriously behind on) I thought I had better update this blog. I have already managed to complete the first chapter of my book but need to start factoring in the experiences of others. The idea of the book is not only write my own story but compare it with that of others. Although our individual journeys maybe vastly different, common themes are becoming more apparent and this can be backed up with anecdotes from the support groups, tweets on #BrainTumourThursday as well as face to face. So I have to get around to researching at some point.

Getting back to writing styles. I recently went to a 'college reunion' meeting up with folk most I haven't seen in nearly 35 years much to my joy, at the home of one, a beautiful house near Stroud. Looking at the photos of us all so young, naive and with our dreams yet undashed, was an experience especially seeing how gorgeous we *all* looked at 17 - 18 years old. Sadly of course, there have been losses along the way, one I felt more keenly a friend called called Rose, who was a beautiful woman and had modeled for Vogue when she was 15 years old. Apparently Rose became blindin one eye and died possibly from cancer. From what I can gather it seems that maybe the sight loss and a tumour somewhere were related which killed her, and of course, you all can guess what I am thinking about in terms of the type of cancer.

Old college codgers

Sadly, back in Penzance, I have found out two more people we know have been afflicted by brain tumours. One used to be my second in command at the lookout I used to run under the auspices of The National Coastwatch Institution, who has ended up in a nursing home after his 'benign' tumour did a considerable amount of damage, and another aquaintance, an antiques dealer has been diagnosed with terminal brain cancer.

And here's the thing, the main point of this entry. I have told you some sad stuff and looking back over this blog, have written much about depression. One of those at the college reunion said he enjoyed this blog but tended to be turned off by some of the 'maudlin' posts here and on Facebook. At the time I felt a little bad about this, but then it dawned on me, that again being positive and 'inspiring' might be very well, but it takes energy which I don;t always have. I want this to be an honest account of my experiences, not just a 'Mary Poppins' type of blog. There is some very uplifting stuff out there from people who inspire me and has given hope to many, but at the same time as much as I want this to be a positive inspiration and informative, I need it to be an honest one too. As said before, this isn't a 'pity me' or 'admire me' blog, but one I hope that someone will read and think 'Thank God I'm not the only one that feels this way', as that's what has helped me the most when reading other people's experiences.

There is room, a lot of room for all types of writing styles,.Some will look for only the hugely inspiring, uplifting stuff, which is fine and necessary, but others such as myself prefer also to read more honest accounts too. I hope this blog does the same, although in saying that, it is good to get feedback and it helps me put things into perspective so I don't end up writing a 'pity' blog. I am not criticizing other blogs, just saying what works for me.

So if you find this blog turns you off sometimes, that's ok but it will not alter what I have to say. This is my account and it will stay that way. It's my writing style for which I make no apology.

Ohh! Get her in a Parliamentary Committee Room!

Other news. I found myself back in Parliament, this time with the Brain Tumour Charity and an all party cross committee meeting about issues surrounding brain tumour care in the UK. I heard some harrowing accounts of how people were either pushed out of their work because of the time it can take to receive and recover from treatment. The tale I found most upsetting was that of a family whose son who had collapsed at a school football match and how difficult it was to get a diagnosis and sadly when they did, the treatment needed to save his life caused a lot of damage but it was to no avail, so they had taken their son home to die.

What saddened me the most, apart from the terminal prognosis, was the fact the young lad needed to be fed by a tube - enteral feeding either by naso-gastic tube where a tube is passed through nose into stomach or PEG (percutaneous endoscopic gastrostomy feeding) where a tube is passed through a hole (stoma) made into the stomach just below where the breastbone ends, and in both cases, special liquid is given by a pump. The family had no training on how to use the machine and local district nurses in their area refused to administer medication as they were not covered to do so. I find this shocking because even in my tiny, half forgotten neck of the woods we would *never* allow someone to be discharged with one of those things without full back up and training.

The meeting revealed the disparity of treatment and care standards in the UK, with some areas better than others with support and what have you. There is still great difficulty with getting a diagnosis, GPs being reluctant in making referrals as cost is always a factor. GPs *can* make direct appointment for emergency CT and MRI scans and I wish they would for those with sudden onsets of neurological symptoms, collapses and/or persistent headaches. The most telling part of the afternoon was a comment from a representative of the International Brain Tumor Alliance, why were we still discussing the same issues ten years later. That to me was a wake up call which really should leave us feeling somewhat ashamed that after a decade, the same problems still exist.

Getting away from brain tumours. There were also a couple of events, one of which was a fantastic day yet resulted in a mass disappointment! Now as nearly everyone on the planet knows, Penzance is very much associated with pirates and a few years back, Hastings (a town more renowned for arrows and their own battles) dared to get a world record for having the most pirates ( people dressed as pirates) in one place. Well, we weren't going to stand for this! So went and broke Hastings' record in 2010 with 8,734 pirates on our prom. The buggers then beat *our* record with about 14,200 pirates! Were we going to stand for this? No! So this year after a *lot* of preparation, headaches, getting the thing organised etc, we... failed to beat Hastings' record by being short of a mere 77 people..!! *head desk* *head desk* head desk* *head desk* *head desk*!!!! A similar problem occurred as with our previous, more successful event, that people left getting entry into the staging area until the last minute and caused a bit of a backlog to the point they all could not get in.

BUT...

Meet Dangerous Lord Dave Nicholson of Rosevean..Yaaaaarrr!!!

We'll do 'un again m'ansums!!!

The latest adventure involved traveling to The Royal Albert Hall for a concert called 'Symfunny'. This was organised in aid of the Parkinson's Disease Association by composer James Morgan, who was diagnosed with early onset Parkinson's Disease at 40 years old. It was fantastic evening with lots of music and comedy, compared by Al Murray 'The Pub Landlord', with guests such as Alfie Boe, Jane Asher and Sarah Brightman as 'guest conductors' and music including my one of my fave classics, 'Zadok The Priest'.

Of course, the highlight for me and a friend called Margo, was to see Ben Miller and Alexander Armstrong reprise their excellent Flanders and Swan parody, 'Brabbins and Fyffe', who songs have lyrics of the risque, toilet humour ilk and very, very funny. The two they performed were 'The Perineum Song' and 'Have You Ever Taken a Sh* t On A Train' with a choral ending to the last song, much to the delight of the audience. The evening, quite simply was divine! Margo and I did hang around the stage door at the end to hopefully see Alexander Armstrong who sadly didn't appear, having left earlier (he was kind enough to tweet us both afterwards), and Margo became very tired (she has multiple sclerosis) so had to :eave. Ever stubborn I remained and managed to not only be able to meet Ben again but also have a brief chat with his lovely wife, Jessica Parker, a producer. Mind you when I say 'chat', it was more my babbling complete bloody nonsense, as usual for which I can only apologize!

The fantastically funny Brabbins and Fyffe (Alexander Armstrong and
Ben Miller) reminding me about my
experiences with some 'facilities' on trains.

That's it for now. Until next time, take care and have fun. :)

Algy's Demise. Bloody hell! 1/4 of The Year Gone!

2014-04-02T16:39:00.001+01:00

Ok, first up. Many apologies for wasting 3 months of 2014 before blogging again! And a highly belated Happy New Year!

So after a winter of storms, flooding and depression, one has survived and hopefully getting her mojo back!

News:

With the lovely Gary Carr after 'The Pass' at the Royal Court Theatre in Sloan Squre.

Have been getting a bit 'Activist' this year which started out heading up to London in February for two events, one to see a colleague of Ben Miller and Danny John-Jules, Gary Carr (above), who stars as 'Fidel Best' in 'Death in Paradise' plus also in the last series of 'Downton Abbey' as jazz singer Jack Ross. Gary was in a play with Russel Tovey called 'The Pass' about two footballers, one who went on to great things and the other who settled into private life and a solid relationship. It was a fab play, quite close to the knuckle with an honest look at same gender relationships and assumptions.

I also went up to lend support to those who have fought to keep Lewisham Hospital open via the Hational Health Action Party http://nhap.org/ who are trying to prevent the destruction of the NHS.

Protesting outside Parliament

It was interesting as they had held a rally outside Parliament and then we were invited in for a discussion with the Shadow Secretary of State for Health, Andy Burnham MP, about the time Angela Merkels was in the building as well!

With Andy Burnham MP in a committee room in Parliament!

Next on to Leicester. As most of the planet knows, I am a *huge* fan of actor, comedian, writer, producer and director Ben Miller, and managed to ~~stalk~~... I mean meet him on a couple of occasions this year. First at a SciFi event, then 2 weekends ago in London with other fans before seeing him (again for me) in Dan Patterson and Colin Swash's fab play 'the Duck House' that has now completed it's run, and has been nominated for an Olivier Award for best new comedy play.

With ben and yes, that is Detective Inspector Richard Poole's actual Briefcase! I won that and

the rest of Richard Poole's costume as used by Ben in a Radio Times competition. Great keepsake :D

And also got he and Danny John-Jules, his co star in Death in Paradise (which Ben, very sadly has left! *sniffles* ) to wear bandanas for brain tumours this year!


Top Pic L - R Margo Milne (in front), Melli Tyler, Stephanie Wunder, Ben Miller Sabine Wunder-Reppingen, Monica Mascuillo, Me, Gilly Henwood. Bottom Pic - the Cool cat himself, Danny John-Jules!

But I digress! Also a very dear friend took me to Rome for 4 days and we had a fabulous time there, visiting the Colosseum and the Vatican/St Peter's Basilica. I even made it up to the top of the dome of St Peter's as well since it was a beautiful sunny day, and the view across Rome was spectacular!

My B&W take on the Colosseum. Spectacular place!

My dear friend Debbie Carter who not only took me to Rome but slogged her guts out pushing me around the Vatican Museum in a wheelchair! Here we're scoffing beautiful creamy Italian ice cream aka 'Gelato' :)~

The dome of St Peter's Basilica from the inside of the chapel.

The climb to the top of the Dome damned near killed me, but it was worth it for this view :D

But for all this, Algy, as fried as he is, still managed to put in the boot. By day 3 of our trip I began to get disorientated and tired. When we got back to the UK, I stayed with my friend in Chichester and scared her half to death when we had to go across a rail crossing. I was wandering straight in to traffic and didn't think about it as I lost sight of the pavement. I heard my friend scream and looked round thinking she was stuck and a train was coming. But it wasn't that. it was I had completely become unaware of the danger I was putting myself in. And also fatigue has reared it's ugly head in the last week, so I have to *make* myself shift and get on with things.

My memory has become a little worse too. I am constantly losing things and on the worst days forgetting events etc This could be a long term side effect of radio therapy, but also I am pottering about with the menopause which does not help. Also nearly keeled over in Penzance yesterday when everything went a bit strange to say the least, so am staying in today.

Other news:

The charity 'Hammer Out' re-branded and relaunched yesterday and are now known as 'Brain Tmour Support' so will need to update info on that. It's good to see the charity develop and they can now be found at http://braintumoursupport.weebly.com/

Lastly there has been some sadness at Nicholson Towers, apart from the winter depressions Dave and I both suffer from, and that is our older cat Danny had to be humanely put to sleep due to suddenly going in to a massive seizure that never truly resolved. He had been getting quite frail over something similar that had happened back in 2010 but had settled after a while. Certainly Danny did get a lot of seizures in his sleep but in his waking life coped ok but for the odd occasion he would lose the use of his back legs or his balance now and then. Of course we all know what that can be a symptom off and I am pretty sure Danny had developed the same. His quality of life was good though, so Dave and I did our best to make his remaining years comfortable. Dave especially is upset as he and Danny were very close indeed, especially in the last year, when Danny would cuddle up to Dave, the two being 'lads' together.

2014 outlook.
I'm heading up to London to give support to the Brain Tumour Charity www.braintumouruk.org on April 8th, with a cross party committee meeting in Parliament, about funding. I haven't had final confirmation yet but I know a seat is booked.

Then will be heading to Gloucester hoping to attend a college reunion (sans ice-pick! Death in Paradise fans will understand my meaning!), head up to Wales to see my family, and help try to break a world record in Penzance. And that's just May!

Of course, I am broke again after enjoying myself too much and that's not going to stop either. Had a fab time as said before with seeing Ben twice this year already and will do so again on June 4th. He and his comedy partner Alexander Armstrong will be on stage at The Royal Albert Hall for a benefit concert 'Symfunny' in aid of Parkinsons UK. I did possess many moons ago a Parkinson's Disease Specialist Nurse qualification, with studying for the module as part of my clinical education. I saw more elderly affected but can remember some very sad examples of a more aggressive type which tended to hit those of younger age, and of course this can be fatal. This event is the brainchild of music producer, composer and conductor James Morgan.

From the Website page, Morgan's bio is "He was diagnosed with Young Onset Parkinson's at the age of 42. He and his partner and fellow producer Juliette Pochin immediately saw the importance of using their musical connections to highlight the impact of Parkinson's and to show that it is possible to continue to work and live life to the full after diagnosis, as James continues to do."

So if you want to attend this, get and book now as tickets are going fast. The web address is http://www.royalalberthall.com/tickets/symfunny/default.aspx.

Also I have just squandered £33.50 on a ticket to go and see the Monty Python team on their very last performance together (so it is said) on the 20th July at the O2 in London. Just hope to goodness that's not the St Buryan Show weekend!

In September I should be heading up to The Royal Marsen for an MRI to see if Algy is behaving himself, so *fingers crossed* on that one!

*Finally* I got started on my planned tome 'Adventures with Algy' by making a start on my own story which as it turns out, is harder than I thought. I have also decided to treat this like a Job, with set hours and times to have a good write. I'm going to write for 30 mins every other day. It doesn't sound much, but with a timer to work to I'm getting more on paper and it helps organise my thoughts and suits my concentration levels as well. My concentration and memory span has decreased quite a bit and I have to be careful not to stretch myself too much, or if I do, then plan when to do it and expect fallout afterwards. The three events above were close together and I'm getting fall out now, but they were so worth doing :) After all, Algy or not, I still want to have a life.

So that's about it for now. Comments as always are welcome.

Hev's Not So Merry Christmas Speech

2013-12-22T05:20:00.001+00:00

Here's my Christmas Speech and it's not going to be a cheerful one.

Depression is not an uncommon illness and a lot of us will face mental health issues at some point in our lives. One of the things I have also had to accept is that this time of year is not the happiest for me now anyway. Also It'll be the 10th anniversary of my dear friend Veronica's death from her malignant brain tumour tomorrow (23rd December) at aged 48. Plus since Algy, winter has become a difficult time in general.

(Below is extracted from Facebook)

I discovered yesterday just how depressed I have become. The positive part of me needs a break & it will be back soon I hope, so I ask you to please be patient with the negative.

I'll try not to be morose but won't put on a brave face either. Hopefully things will improve soon but again, please no more advice on 'being positive', 'not cutting the small stuff' etc. It takes *energy* to be positive, energy I don't have right now. I have 'cut the big stuff' with having and living with a brain tumour, but it is the small everyday stuff that *is* frustrating because the 'big stuff' effects it so much.

In short please accept that I am having to finally acknowledge that I am still grieving for the loss of my career, skills plus a large part of my self worth. I'm not after pity, sympathy, anything like that but just your understanding and patience. I'm not doing a 'poor me' because I am not 'poor' but very well blessed. I told my husband Dave what is happening and how irrational and obsessed I seem to be getting over Twitter, my memory problems, goodness knows what else etc. He didn't laugh or get upset about this, but just gave me a *big* hug instead and we discussed my feelings later in the evening.

Dave had a similar problem after the death of a very good friend of his some years back, although his anger was directed at another friend whom Dave felt at the time wasn't giving him enough attention. This was an irrational feeling because this friend of his was always there during Dave's bereavement, and Dave thinks what I am going through is a similar thing.

I realized when Dave said this, that what is happening is I am still not able to 'close the book' on my past life i.e. my career which was my life for the best part of 32 years and I am still grieving over that loss now. However, I have to *allow* myself to grieve, finally face the ghosts and monsters of my past, present, fear of/for the future (sounds very Dickens), obsessions and irrational feelings of abandonment. Hopefully if I can do that, then maybe I can move forward in to the next phase of my life and deal with whatever this is more effectively.

After all, one cannot get rid of the elephant in the fridge, until you can accept it is there standing in the butter dish in the first place.

Wishing you all a Happy Christmas plus hopefully a peaceful and prosperous, trouble free 2014. And thank you, *all* of you for your friendship, support, help and encouragement over the last year.

Much Love,

Hev XXXXXX

Algy's Demise - On Saying The Final Goodbye.

2013-11-27T23:56:00.000+00:00

Algy's Demise - On Saying The Final Goodbye.

Somewhere here I have blogged some prattle about people's reactions and actions in dealing with a loved one who is dying, plus what I have witnessed in hospitals, that did not quite fit in with the Elizabeth Kubler-Ross model, or maybe they did. In any event I unwittingly did Ms Kubler-Ross a bit of a disservice.

This entry is going to be about the 'D' word again so be warned. It's not going to be terribly cheerful as again it will be stuffed with emotion, some repetition and probably the hardest thing for me to write with any degree of real honesty.

I wonder how many of you have faced the loss of a loved one, in the fact of being confronted with a diagnosis and prognosis that essentially says "that's it, we can do no more."? How many of you are facing that now with your own diagnosis? I have experienced the first both as a professional and on a personal level but will be honest and tell you I have tried hard not to think too much about the latter.

As said before in my career, I have been around death quite a bit (hopefully not as a cause of!) from that horrible moment when a patient and their loved ones are informed there is nothing more that can be done to the point when death has occurred. And also again, I have considered taking care of the dying a privilege as that is the last thing I can do for that person and hope that at least there has been a semblance of dignity before the final breath has been drawn. I have been there when a machine has had to be switched off, when the 'line goes flat' after thirty minutes or so of desperately trying to resuscitate a patient, or offset some other life threatening condition, to the peaceful gently holding a hand of a much loved elder person whose life was drawing to a close after many years on this planet.

You would think after all those experiences, I would be like one of those serene sorts who would encompass a passing with the philosophical air, a comforting word with a sigh. And yes, I have managed to keep my voice level, attend to the needs of those who are left behind, being practical, not too overly sentimental and I hope able to reassure people that a) it's ok to be sad and to cry and b) those left behind (usually) have the best interests and love for the deceased which can make letting go a tough deal, no matter how expected the passing. I have been a source of strength and comfort, so I have been told, but also have had my fare share of running in to the sluice room or treatment room to shed a few tears myself. What chokes me up is when I see others starting to cry or become upset, especially when the news is sudden for example when a relative has been informed their loved one has taken ill, to arrive and find that sadly their loved one has died. The resulting shock is indescribable and for all the best will in the world, there is never any 'easy' way of delivering the news and dealing with the aftermath.

But also there has been a level of maturity that has developed over the years, of experiences and helping my colleagues deal with the situation, especially junior staff who are starting out on their career with the hopes of being healers, but who have to also understand that death is a part of life, that not everyone is going to make it, or peacefully or otherwise pass from this life. They will have to learn about dealing with the dread of phoning someone at 3am to break the bad news, or face to face in a waiting room somewhere be it to inform someone of the death of a spouse, relative of an older person or God forbid - and I have been there to see this - being informed of the death of a child. Also they have to learn there *is* a time to die, that none of us are built to last forever and 'life saving' options are not always the most appropriate options to seek.

But none of that has helped me deal with this terribly well in my personal life. It is true when you have professional face, it can shield you to a certain extent as often there isn't the time to contemplate the full impact of what has happened as there is more to be done with the living who also need you. That's not to say there are no feelings, but just the fact there isn't time to express or contemplate them.

There has been the time, too much time to contemplate that someone close to me has a limited life span left, and the feeling of helplessness that I have felt inside while trying to be the good strong friend and bring comfort to those who are dying. I am known to be quite honest in conversation as those I have talked to often have told me things they would not want to anyone else to hear, and on one occasion, who needed to hear I acknowledged they knew they were dying.

One of the very first entries to this blog, I wrote about my friend Veronica who died from a glioblastoma multiform brain tumour and a conversation we had a couple of months before she died, but I think that conversation was rather one sided as I remember now I did a lot of the talking. But I hoped, and still hope it brought her some comfort.

I had a similar conversation recently with another very dear friend I have known nearly all my adult life and had worked with over the years. And now it's hitting me she has finally gone as I write.

Linda was a fellow nurse, cheeky, stubborn, brooked no nonsense from senior staff, knew her stuff and had a wicked sense of humour. Two years ago she survived breast cancer but in late summer of this year (2013), died from peritoneal cancer which had spread over the lining of her abdomen. No one really knows but this could have been a metastasis from the small cancerous cells found in the lymph nodes of right breast that were successfully treated by surgery, backup radiotherapy and chemotherapy. No one can always foresee if the cells have fired off into other areas of the body or not, except through regular checks.

Lin herself retired from nursing through ill health as she also had arthritis, but I felt she retired from life itself a bit as she was a glass half empty sort of person, whereas I tend to be a half glass full. She spent the remainder of her life sitting at home with her iPad, tobacco and cups of tea close to her side. When Lin had the energy, she would visit her favorite pub close by and enjoyed a lot of Gold Label. At first, her husband tried everything to get Lin to join in other activities but given her energy state and stubbornness, Lin decided otherwise.

But of late, she began to take to her bed, surrounded by her cats whom she loved and stopped eating and only when she began to suffer crippling pain and weakness, Lin allowed herself to be admitted to a local hospital, where she was found to have acities, a condition where fluid builds up in the abdominal cavity for various reasons, one being the presence of a tumour somewhere.

Cutting a very long story short, Lin was found to have multiple cancer nodules across her abdomen and needed up to 3 to 4 litres of fluid drained from her stomach daily as there was no real way to reduce the cancer, which was the cause of the fluid build up. Lin had left her treatment too late I guess, not fully realising what was happening at first but also deep down on realising the extent of her illness, was not prepared to live through another bout of chemotherapy and what have you. She was always straight forward and honest with those around her. Not one to beat about the bush, she wanted to remain in control of her own destiny.

I visited Lin who was in inpatient at Treliske not long before leaving for London to start my radiotherapy, and had a feeling I wouldn't be seeing her again. We chatted about her cancer and Lin was very definite about getting her affairs in order and trying to reassure her husband as well but and I think she knew she was dying at this point. I certainly knew at any rate her condition was too far advanced for any real effective cure. We have both been experienced enough with this type of cancer, to realise after a certain point treatment was usually only palliative.

Mentally, I said goodbye then, but have only just completed that journey earlier today. I wanted to see her one more time before leaving for London but she didn't want to receive any more visitors, so I asked her husband to pass on a message to Lin that I was thinking of her. After two days in London, I got the message to say Lin had been admitted to a local hospice for 'end of life' care as it is known now, and had slipped into unconsciousness. A day after that, I had texted her husband to ask how Lin was, and he had text back to say she had just died.

A part of me was relieved and a bit distant, another part just burst into tears. I am an emotional person and am not capable of doing the 'stuff upper lift' thing, and find as I get older, I am not so able to control my emotions like I used to, not that I was ever very good at that anyway. Lin was the complete opposite I think, taking charge of her situation by making sure a will was completed, wanting and arranging to be baptised, setting her affairs in order and making sure she said goodbye to her husband who was faced with her dying. She wanted no fuss and wished for cremation and to be buried with two cats of theirs who had died in previous years. There is a small pet crematorium and cemetery outside of Penzance, where animals and their human companions can be buried together.

I wish I could have returned to Penzance for her funeral but it would have been a disservice to Lin's memory if I interrupted my radiotherapy and I often joke that if I did, Lin would come back to haunt me. So finally after a long while, Dave and I went to the cemetery at Chyenhall Farm earlier today, had a bit of a domestic over parking and where I planted (not very well) some crocus bulbs on one edge of her grave. I didn't feel too emotional then, but am feeling it now and as always, hate the fact I had to say goodbye and am not very good at accepting it.

My own death? I have a strong faith, but yet I am scared of death, probably the method of it and the separation from those I know and the planet I have inhabited. I have no particular thoughts about the 'salvation of my soul' as I feel the judgement of that lies with the deity I call Heavenly Father. To me an afterlife does exist but that does not make the fact of passing into it any easier to contemplate. I am afraid to die, I don't want to leave, I don't want to be without David, I don't want to be alone. If there is no afterlife, I don't want to become nothing more except a bunch of protons and electrons - but that is an immortality in itself I guess. I don't want to cease to exist and I don't want to miss out on all that will happen afterwards.

I have had to think about these things though. My parents and David's are at an age where their time will be done soon and I would like to think the two of us will be able to deal with that well, but whether in your 50's or five, when a parent dies it can hurt just as much at any age. When you have to deal with the fact a loved one, or indeed your own life span is going to be restricted in some way, that's also lot to deal with. I like to think when my time comes I will have dignity and will be brave, not to dissolve into tears at the thought of my passing, but that is something I cannot guarantee.

But I know even more so now - especially after the discovery of Algy and the fact he or a cousin could still suddenly rise up to put the boot in - I have to start looking at my mortality and accept that I have a lot less years ahead than I have had behind me, and deal with the fact one day I really will have to finally say 'goodbye'.

Algy's Demise - Fangirly Special: Questions from an Actor - Some More Info.

2013-11-21T17:20:00.003+00:00

I'm literally crashing out this week as my entire November supply of energy was used up with a trip to Nottingham to see actor/comedian Ben Miller in a fantastically funny play called 'The Duck House'. After that I headed down to Plymouth afterwards for my favorite annual event, ArmadaCon - a small scifi convention celebrating 25 years with most of us still standing after all that time!

I had planned my trip to Nottingham as soon as the dates came out earlier this year, as it was the first venue to be announced where 'Duck House' would be playng. Had I waited, I could have seen it in either Malvern or Guildford, but heck travelling to a new place is always an adventure! Although I would ask the Park Inn - a Radisson hotel - to be a little more honest about their disabled access i.e. little or none! Anyway, I'm going to leave that for another time,

Nottingham is a big place which seems to be undergoing mass reconstruction at the moment. But the area around the Theatre Royal, is a shopper's paradise with most of the big high street stores close to hand, some in very nicely appointed shopping malls such as Victoria and Corner House.

But it was bloody cold too! Remember in Cornwall 8 deg. C is considered 'ice age' so it's a shock when one is lugging shopping about in temps struggling to hit 4 or 5 deg C! However, one of the *best* eating experiences I have had in a long while, was in a place called 'Hot World Buffet', an 'all you can eat' restuarant with an international cuisine theme. You are with choices of Chinese, Mongolian, Indian, Italian, Japanese, Mexican and good ol' 'Murican' food. You can mix and match, do what ever you like. And the desserts! Wow..let's just say not all were slimming world friendly!! Here's the link :) Red Hot World Buffet Nottingham.

Anyway, I had arranged to meet upwith Ben before the evening performance for a quick 'hello' which I was glad he agreed to. Expecting an actor to hang around after a performance, would be a bit much to ask especially after an evening of dropping one's trousers, chasing duck houses and avoiding senior MP's with a strange predelections towards Camembert cheese, Pandas and Angela Merkels..! It's enough to wear a chap out fo sho'!

I'm not saying another word about the play itself except for only the third time in my life, I had laughed so hard, I had to reach for my Ventolin inhaler during intemission and afterwards! It is a brilliantly funny peice of work. The play starts it's West End run at the Vaudeville Theatre (Strand) from Nov 27th for previews then in earnest from December 10th - March 29th 2014. Details here www.the-duck-house.co.uk Please go an see it, it is brilliant play and all the cast are fantastic!!

Ben was his usual lovely self and greeted me with a big hug and after some pleasantries, he asked me some detailed questions about my radiotherapy and what side effects there were. I did manage to get my head out of 'fangirly' mode as this bit was quite serious. I was not going to play the 'little heroic me' and say that I was fine, as the man asked direct questions. But it was nice that Ben thought I looked so well. Here's a list of what I told him, but also what I forgot to tell him about the more long term effects.

Fractionated Stereotactic Radio Therapy Side Effects.

Short Term Effects -Worsening of current tumour symptoms of fatigue, neuralgic pain (is impacting on Rt. Trigeminal Nerve), balance and spacial perception. Also cognitive problems, short term memory problems, mood swings, premature onset menopause (not worried about that one, 2/3 of the way there already!) Also possible increase in petit mal or other forms of absence seizures but so far, that hasn't happened. Hair loss around target sites - didn't happen to me. I have thin but tough hair! ;-)

Long Term Effects - The reason why I had FSR rather than the shorter more intense 'Gamma Knife radiosurgery' is because of where Algy is situated. There were concerns about a more intense therapy in that region could irradiate the brain stem just below where Algy is nesting against the Pons. So smaller, more wide spread doses hopefully lessens the impact of radiation in that area of the brain.

And also - possible damage to pituitary gland, I was told I should be referred to an endocrinologist and checked yearly as the pituitary gland was in the path of one of the beams used to target Algy. Premature aging of the brain, a 2% chance of developing a malignant brain tumour over 10 years and so on. There is also an increased risk of stroke but then lifestyle changes will hopefully offset that.

The above is of course, the worse case scenario and given I am already neary 53 and the above could occur anytime over a 10 year period, I'm in a time of life where I could develop these symptoms anyway, so considered it worth the risk for radiotherapy now rather in 2-3 years time. I don't see the logic in waiting for Algy to get any bigger or waiting for more damage to occur before treatment.

http://psychapprentice.weebly.com/4/post/2013/02/pons.html

I will be having yearly MRI scans to check on Algy's progess as it can take up to 5 - 10 years to check if Algy's growth has been inhibited or stopped completely. There is a 40% chance Algy may shrink over that time but no one can say by how much or what damage may be permanent despite Algy's shrinkage. So really that's all that can be done for now. The intent of treatment is to arrest Algy's growth, so anything else is a plus, an extra. Surgery would not be considered due to Algy having tucked himself neatly against the Pons with the cranial nerveswrapped around him, and also being so close to the optic nerves too. So *fingers crossed* Algy will be a good boy, stay put and not make me blind, paralysed or anything else!

So there you go! It does sound a lot worse than it is, and of course, no-one can predict the future and how things might turn out. But one thing I *can* predict is that when I go up to see 'The Duck House' in March next year, I will be laughing as hard and as loud as the rest of the audience! If 'Duck House *doesn't* get an Olivier Award, there'll be a protest!

Break a leg Ben! :D

Ben Miller with some mad woman outisde the Theatre Royal one cold November evening!

Algy's Demise - Thoughts On the Hammer Out Awareness Day in Plymouth 9th Nov 2013

2013-11-10T00:28:00.001+00:00

This is my entry to Facebook this evening. Edited for here.

Had a good day today at the Hammer Out Awareness day in the Mustard Tree Centre at Derriford, where support for cancer patients is given. Sadly though and this must be addressed by all medical and ancillary parties, it has come across very loudly that those of us with low grade tumours that are classed as 'benign' or below a stage 3 are often not given support because our tumours are not aggressive enough. There were so many there today have suffered badly with their 'benign' tumours; yet appeared to be dumped after treatment is given and had to really struggle to get support.

Me, Julie Liddle, Robyn Teague, Katrina Pearce, Ann Coles at the meeting.

Personally I am glad I decided to be treated at the Royal Marsden because I have had the support there which I don't think I would have had at Derriford. I also had to put my foot down a bit about getting treatment as my symptoms were getting worse but there was a reluctance to start it. Please be reassured though that the Oncology Clinical Nurse Practitioners themselves at Derriford are brilliant, but they're not always being advised of those with low grade tumours who have had (often extensive) treatment but have been left with very little or no support afterwards.

Thinking about it now, my heart is breaking because I revealed to the group how I had to basically sort out my own 'rehab' as (I have been told) there is no vestibular trained physiotherapist in Cornwall and had to hunt for support via the internet, which took some time to do as well as coping with the loss of my career etc.

Right now, as brilliant as the meeting has been, in the last hour or so having thought about what has been discussed today it has opened some old wounds and brought back memories of feelings of fear, frustration, loneliness, hopelessness and being useless and am actually shedding a tear as I write this. I wish I could have found Hammer Out sooner. But my family, friends, all of you here were and continue to be brilliant with your support and I wonder if I would have fared so well without it.

Lets hope that the Cornwall support groups that a friend and I will be involved in will help those affected. Next task is to get the info out there but any Penzance GP here, I'm going to ask a question, although I have passed on info about Hammer Out and the support groups, why aren't the notices being displayed in your waiting room notice boards? Such a simple thing can help someone though a terrible time with their brain tumour, non-malignant or not.

Again for me it is the sadness that those of us with low grade tumours (I *hate* the word 'benign' and refuse to use it now) are not always getting the support needed for coping with diagnosis, impact on life, aftercare etc. For those with high grade tumours, I am glad to say the service in my area is usually impeccable as it should be. But low grades have the same issues, treatments etc and can still die from theirs. Although treated as oncology patients, we often don't count as 'cancer' patients as that is technically a term to describe malignancy.

In my opinion and it has been said, whatever grade you are, the words 'Brain Tumour' changes you no matter what level of seriousness and I think that term alone should be unified and at the same level in terms of availability and in the quality of support to *all* brain tumour sufferers.

A small but prime example of this is that there is a journal called 'the grey book' that is similar to the one brainstrust issues, for brain tumour patients at the Mustard Tree Centre, issued by MacMillan, but only those who are a stage 3 and above. Yet we can all have the same issues etc and that has hit home the unfair divisions between low and high grade patients.

I think this should be discussed in all groups and flagged up by the larger brain tumour charities as there are dependencies (in my neck of the woods certainly) with the quality of aftercare. I mean it's hard enough at the best of times to get a diagnosis, never mind as to what stage and coping with the impact on one's life.

Also just read on FB that there is a medical professional who refer to low grade brain tumours as 'malignant by location' which I think is a better term and prescription.

Opinions welcomed on this one.

Algy's Demise - Mental Health and Brain Tumours; My Confession.

2013-10-19T16:52:00.000+01:00

I have had a series of melt downs of late, which is to be expected considering the underlying stress that is always present no matter how 'benign' Algy is in terms of size and effect. But I have noticed the things I usually enjoy are now becoming sources of great anxiety.

Having a look back through this blog, most posts are about my feelings and emotions than anything else. I find it therapeutic to write so yes, it's a given but also I have noticed the rise in the frequency and severity of meltdowns which can be at risk of getting out of control if not dealt with.

I hate to say this, but social media - or more correctly, Twitter and Facebook is my conduit to the world but that seems to be changing. It's not the medium itself but how I have used it plus my expectations of it, becoming dependant not just for company and news, but also a place of bolstering my self esteem .

It has become the place where I lay my 'back-to-adolescent' insecurities, anxieties, need to be noticed, to be reassured, to be validated as a person. In short I have become addicted and worry one day I will go too far in terms of my neediness and will lose those I follow there and have become friendly with..

On reflection, I seem to be more prone to mood swings which I wonder is bordering on obsessive behaviour , plus what also isn't helping is the menopause which I am starting.

So am I just going nuts? Being childish? Or maybe there's more to this than my time of life and maturity issues?

Most emotional changes are natural responses to being placed in a situation that by it's very nature is a great cause of stress, especially with having to deal with the changes and effects placed on ones life style and responsibility.

Neurological diseases and disorders can and do have mental health illness as a symptom, not in the least brain tumours as some will impact on areas of the brain where emotions, thought processes, memory function etc originate. Add to that effects on the cells where the nerves originate impacting on movement and physical function, all can add distress.

Most Obvious are:

Fear, anxiety, anger, sadness/grief, insecurity, denial of the stress, losing perspective, increased tendency to arguments, width drawl and increased isolation, obsessions, obsessive compulsive disorder, possible loss of reality, inability to cope, depressions, changes to personality, increased mood swings/highs/lows

Also

Memory loss, confusion, exacerbation of current mental illness such as psychosis, dementia, etc. Onset of new mental illness such as anxiety and neurosis, depression, cognitive changes. Depressive disorders. Personality disorders as well as the above which will have an impact on physical function.

The above list is by no means exhaustive. Also it should not be taken that you might have any or all of these, but it does have to be recognised. Often the onset can be gradual or may have nothing to do with the brain tumour, that it can be a problem arising from other illnessess.

My own particular situation is one maybe borne from dealing with changes to my personal life and I have to admit my underlying fear for the future and becoming 'persona non gratis'. As said before I have that wonderful thing called 'The Menopause' which as much as some would hail as being a positive milestone for women, has been a prized pain in the ass for me, not helping my moods what so ever! But I guess at least having an awareness of these means at least I am not going certifiably crazy - yet!

I do have a long way to go in terms of awareness, self honesty and dealing with the future. There is so much I want to do, and I genuinely want to reach out to others and make a contribution. But I also have to recognise my limits and recognise when my reactions are becoming unhealthy and unrealistic. It's a sobering thought, something we all have to be aware off whether fit or not, and also accept that others around us may not always be in a position to help or even understand.

Reaching is out is important and quite often, whether we like it or not, others are more likely to see the changes before we do and that is difficult as it can lead to conflict or abandonment from either side. Some really cannot deal with the issues and some may not want to. Much heartache can usually and does result which is why it *is* important to consider mental health needs along side the physical ones when discussing care and symotoms with your doctor.

Here's a quote from a web page which sums up the issues well.

"Brain tumors can cause seizures, mental changes, and mood, personality, and emotional changes. Tumors may also impair muscle function, hearing, vision, speech, and other neurologic activities. Such effects can be very difficult for both patients and caregivers."

From The Avera Website

Also there's a handy info sheet from an Australia you can find at Beyond Blue Site (Ausralia) This page will open up as a 'pdf document' and you will need a reader for this. A free one can be found here Adobe Reader Website

Hopefully my particular issues will settle in time as I recover from radiotherapy. But an inflamed Algy has a lot of impact and certainly this needs monitoring but not something to be afraid of so long as I am sensible, see it for what it is and seek help when necessary.

Algy's Demise - On Charity and Volcanic explosions

2013-10-14T16:31:00.003+01:00

Ok, I'm having another 'moment' or more precisely a moment that is turning in to a long moment. Sleep has been rare of late, at first due to facial pain but now because my sleep pattern has well and truly gone up the spout! And when I get overtired, explosions occur in volume similar to Mount St Helen's, Vesuvius and Krakatoa!

Apart from the lack of sleep, what set me off yesterday was a quite innocent tweet from someone who follows me on twitter (and others on her list) telling me I had thirty minutes to get in on a charity action for a children's hospice. In true fashion I overreacted first of all tweeting back how sadly I couldn't join in, but the reply made me BLOW!! At that point, I angrily departed saying I had it with twitter and goodbye! Luckily I have some very understanding friends who calmed me down. I tweeted the sender and gave her a dressing down she would not forget, so hopefully that in the future she will take a little more care on how to send out such tweets and eithre not send them out individually and also only to ask to spread the news about any event.

The reason is this. As anyone who has had to recover or adjust to a long term illness, there's one thing that can hit you harder that your health and that is what it can do to your financial security.

Even with insurance, which sadly I never qualified for due to other medical conditions, it still depends on whether you qualify under their terms of agreement whether you can get the payout you have invested in. Also, what about job security? The ability to pay bills such as mortgages, cat insurance and tax, utilities, clothes for the kids, food and vets for the dog, your actual financial status, your appearance ("you don't look like you're ill" might be a compliment but it can also mean something else), costs of getting to and fro for treatment. Not everyone lives close to one of the eleven treatment centres in the UK. There is all that to consider never mind feeling ill and undergoing whatever treatment is needed.

Don't upset me. You really *don't* want to upset me.....

And when you have gone through months of worry, maybe surgery, radiotherapy and chemotherapy, would you be fit enough to return for work, or will you continue to be ill, not able to sufficientlky recover and then basically sacked because you are no longer able to fulfil your terms of contract, what about then? What about your savings, applying for benefit? What happens when you find out your application for Employment Support Allowance or Universal Credit which is less a month than you would normally spend on petrol and than you have to re-apply as you most likely will be automatically turned down and have to appeal, of which there is no time limit and no money paid to you until after (you hope) you will win the appeal.

And the same goes for Disability Living Allowance or personal independance paymentents as it is called now. Problem with the application forms you have to be savvy at what you put down which is what you are like on your absolute worst day and if you are called for a medical assessment be sure the person assessing you will have boxes to tick and nothing more and the fewer people that pass in their view, the better because as much as that is denied official sources, that's what happens to a lot of applicants.

Now about charities. Of course a lot of help is needed by a lot of people and causes, and it has become a battlefield to get funding. But what I don't like though are the street campaigners who will accost you and door to door campaigns. There's been the odd door to door collections of which we have given our last bit of change to in the past. Again most are for a worthy cause and I assume the more official campaigns are a good effective way to get sponsorship and donations. But I resent it for two big reasons. a) because it puts me on the spot and because of my own financial situation, I have to turn down or even try to avoid the campaigners and b) the percentage of the costs paid by the bigger charities to a PR company who set these street campaigns up.

I feel bad enough about not having the cash to put in the odd cap but there is such pressure nowadays to support this, that or the other most likely there is a greater need. Personally I'm becoming overwhelmed by it all and the feelings of guilt are there, no matter how understandable the reasons are for not being able to contribute cash.

So when a friendly tweet comes through to my hash tag telling me I have 30 minutes to start bidding on a charitable auction for a children's hospice, I blow as it is one request too many. I did send back a polite tweet explaining why but hated the reply, of 'don't worry it if you can't, I understand' sent me over the edge.

Ok, normally I think I would have growled a bit and would have delete the tweet but felt it was asking me on an individual basis with eyes watching to see if I did join in. I have a policy now on for not holding back on *why* I cannot do certain things when acosted in the street and this is no different. When challenged why I won't sign up etc - and yes this has happened - I will not just only explain why but will ask for a donation to 'the Hev fund' (I have 'Hev' as a nickname in some circles) too.

Now don't assume I cannot or do not want to support charities. I support five, two with donations that I wish to continue with and the other three with my time, but I can do no more than that. And do not assume other brain tumour sufferers cannot or are not able to contribute, there is some marvellous work being done in the brain tumour community of which I try and help with if and when I can to raise awareness. Yes we are trying to raise cash ourselves but I hope none are guilty of accosting people in the street or telling them to join in an auction on twitter without at least being sensitive to the fact some cannot afford to make monitary contributions or give their time. Or at least not to openly to ask it of an individual on a social media website.

As said before, I am more than willing to give what time, effort and what energy I have into volunteering and highlighting a cause or whatever. But if you want me to donate cash right about now? Please don't ask as a refusal often offends.

Algy's Demise - I Got Stoned and I Missed It...

2013-09-27T23:13:00.001+01:00

It's been a few days since Dave and I returned to Penzance. And Boy! They were *not* joking about the side effects, which seemed to get worse a day after radiotherapy was completed.

Dave at the Crown next to the Royal Marsden Hospital

We had a good few days together in London as Dave needed a break too. I've yet to post photos up but the joke will be for every place we visited there will be a piccy of Dave sat in a pub! I think he has seen more of London in the last six days of our stay than he has in a lifetime. Also having to take the bus because I cannot tolerate the underground crowds etc, he has noticed the architecture of buildings, places and whatnot and has enjoyed that immensely. We did take the underground once to an event up in Islington that we very nearly didn't get to because of repairs etc and of course, Algy decided to show his displeasure and I ended up collapsing flat on my back with Dave suddenly understanding the importance of when I say 'I need to stop, eat and rest' I mean it and the consequences of not doing so. Poor man!

As much as I am delighted to be back home, I've have had a bit of a time adjusting and everything appears to be a little different. Of course Penzance is hated by both County Council and Govt, so half the town is closed, yet there's a bloody great Sainsbury's being constructed where the heliport used to be, which was only supposed to have one floor and trees to obscure the view, that somehow has magically got past that restriction. I hate to say this but I'm getting the impression there'll be a notice going up on the Tesco's roundabout saying 'Penzance - Closed. Go Away. Nothing to See due to Apathy and Self Interest'. That sounds cynical I know but it's been sad seeing what should be a vibrant coastal town turn in to a dust bowl surrounded by a supermarket hinterland.

Where I collapsed in Islington

I digress. Now, radiotherapy side effects. I was warned that fatigue and possible facial pain would occur as Algy is swelling a bit as the protons do their stuff through him and some surrounding areas. But almost immediately after stopping Dexamethasone - a steroid - the vertigo is back with a vengeance! Also I still have a terrible craving for sweet food yet can't taste it well, my concentration has gone to pot and I feel spaced out all the time but at least the seizures haven't increased apart from the Islington incident. I find now I dare not leave the house on my own as I am definitely more wobbly on my feet, so need Dave or someone with me so I can grab their arm. That's always been a problem in narrow crowded areas but for a while, sadly, it will be a little worse.

The neuralgic pain is irritating but not screamingly bad. I take a stronger form of co-codamol (solpadine) which has 30mg of codiene with paracetamol rather than the 8mg you can get over the counter, and a drug called Amitriptyline at 25mg which is a sedative but also used to control neural pain. There is another drug commonly used called Carbamazepine but I am highly allergic to that, so will see my GP on Monday as I have only been given a few days worth of the Amitriptyline. I might ask for another type of neural pain killer called Gabapentin, but that's quite a strong drug. We'll see. In any event, the effects of the drugs I am taking now are leaving me ever so slightly stoned! *Hic* ;-)

Everyone will have a slightly different experience with their treatments, recoveries etc because again, it depends on what type tumour, radiotherapy, where and for how long etc. But common to all is fatigue of the type where you are bone weary and sluggish despite sleep, so I am prepared for that. However, I have decided that I must go out for a toddle each day when I can with Dave so I don't literally end up housebound.

I am also noting my behaviour and moods. As some of you know, I do get mood swings and this can be a problem and of course depression is an understandable reaction to all that is going on. There are mental health issues that can occur as a result of the stress from being ill and also physical ones too upon one's thought processes, especially if you're on the menopause! So you're all going to have to be patient but please, feel free to give me a kick up the pants as well because sometimes I need help to get things back into perspective.

Dave at the British Museum

With the above, the secret is I guess, is to get to know how you will be affected and be honest about it. Right now I'm ok while typing this but tomorrow it may be all doom and gloom. There will be swings and roundabouts but because I have been informed about this and have an idea what to expect, I think I will be able to manage this better and know when to seek help if it all gets a bit too much. I am also letting those around me know what could happen so they are prepared too as I already had a flare up over something a few weeks back which resulted in my ripping some family members a new one on Facebook! So now they know now for instance, to keep me in the picture about anything major going on. It was a misunderstanding for sure but also very poor communication on their part too which only got sorted after my Facebook outburst because someone saw my rants and realised trouble was afoot!

I would love to hear from others about their experiences with their treatments, and from family, friends and colleagues who know someone with a brain tumour. You can reply here, email me at madamcod@yahoo.co.uk. or contact me via Facebook (I am Heather Taylor-Nicholson there) or via twitter where I am @braintumourlady.

Right, more drugs needed! Laters!

Algy's Demise - Goin' Home...

2013-09-23T10:53:00.001+01:00

Now before you all fall about laughing, yes I am a fan of The Osmond Brothers and a song of theirs has been ringing in my head since I woke up with morning. The chorus especially!

"Goin' home, goin' home, goin' home,
I gotta make it, gonna make it all right.
Goin' home, goin' home, goin' home
If it takes the rest of my life........"

The lyrics sum up the journey so far very well. And it is only so far too as Algy and I will always be together. He might be fried but how effective that will be, no one will know for years yet and he can never be removed unless he decides to ignore six weeks of protons being fired through him, or take in a cousin (2% chance) in the next little while and try to occupy more space. If that happens, at the very least it will not be pleasant because the little bugger is quite close to the brain stem.

We leave for Penzance tonight at 7pm but will spend the day quietly tidying up, having a last look about the Goldborne Road area where I have been residing these last few weeks, and I'll try not to think too much about the near wiping out of my credit card and overdraft that has occurred. It has been a blast here in London and treatment aside, I have had a great time with being lucky not to be so ill I couldn't get out and about. However, I wonder if the side effects had been worse whether it would have been as much fun?

So this is going to be one of those *huge* long 'Hollywood - overrun - at - the - Oscars - thank you' posts, because there are *so* many to thank, in groups, indiviuals and I *know* I'm gonna forget someone but please if you're not on the list, don't fret. I am *so* grateful to you for making what could have been a dreadful time actually go very well!

*Loud intro and drum roll*!

My grateful thanks to (in no particular order) -

My Darling Dave, My baby bro Trevor, Lowri, Bethan, Nathan, John, Tina, Margaret, Duncan, Anne, Duncan Jr, Peter. Mum & Dad.Anthony and Tricia, Gordon and Gladys
Margie and Robert Hall
Veronica Taylor and The New Freedom Project
Debbie Carter @DebbieCarter14
Sarah Tarmey @tarmeygal1
Claire Siliciano @Science_Fan
Gilly Henwood @Gillyh1
Margo Milne @MargoJMilne
Misa Buckley @MisaBuckely
Claire Bullimore @BrainTumourAunty
Eileen Bullimore @pillionqueeen
Alana Herd @MyMillionToOne www.mymilliontoone.com
Ben Miller @ActualBenMiller
Philip Ardagh @PhilipArdagh
@DeathinParadise
Gary Carr @iamgarycarr
Elizabeth Bourgine @lizbourgine
Danny John-Jules @DannyJohnJules
Beth Allan @BethAllen
Cappie @Cappiehead
Jo DeLapo @agitator76
Nathalie Martin @NanyLouloute
Sabine @Gracie_22
Steffi @St3ffi_K
Hils @HilsP
Manuela @manuzanni
Jodie @sunshine_6972
@Whovian__
Kim Agaren @kikiagar
Michaela C @FiveFrogsBlog
Yasmina Sihel @YasminaSihel
Kaz Poole
Cafe Roma
The Crown - Marsden.
Jullie Liddle
Katrina Peirce
Chris and Jenny Smirthwaite
Pearl Ashton @pearlashton
Ann Coles at Hammer Out
Shane and Timothy Spall @pastafa
@HammerOutNews
All at The Royal Marsden, Fulham Road inc Katheryn and all on Lederman.
Mr James Patterson FRSC FRCN
Glad Baldrey RN BSc CNS Neuro-Oncology
Dr Jan Power, Dr Hugh Marshall Rosmellyn Surgery
Shirley Harris, Matron, West Cornwall Hospital
All at West Cornwall Hospital, Penzance
All at Derriford Hospital, Plymouth
All at Hammer Out Brain Tumours
All at Brainstrust
All at Meningioma UK
All at The Brain Tumour Charity
Shaun Skinner
Nick Phillips
Simon Reed @aramblingidiot
Mike Sagar-Fenton
Julian Greenwood-Penny
All at The Cornishman @The|Cornishman
Marilyn King
Jan O Malley
@TeamXander
@RichardOsmanFan
Cameron Yarde Jr. @CameronYardeJr
Alexander Armstrong @XanderArmdstrong
Alison and Dave Trace @aligubbs
Pamela Sutherland @Ltd_To_Two
Poor Old Bird @pooroldbird
S A Meade @kestrelrising
Jon Parker-Saville @FutureGuy75541
Lindsay Pickering and Peter Routley
Andre Haines and Gregory Watters
Rev. Julyan Drew @pronterjools
Chris Steadman @ChrisDSteadman
Susie Tait and the Monday Slimming World group.
Elizabeth Reknowden
Heather Anne Stewart-Gillis
Marla Kaye
Geraint Wyn Davies and Claire Lautier
Bea Quindlen
Susan Doss
Astrid Tanabet
Mary Strowger
Marg Yamanaka
Lee Kennedy
Chris Chell-Czerwinski
Maribel Veal
Gill and David Dodson
Jan Crocker
Roseanna and John Bray
Elizabeth and Eric Bray
The *entire* congregation of The Church of Jesus Christ of Latter-day Saints in Helston, Cornwall for all the cards, pressies, choccy *and* for feeding my C of E hubby Dave!
Wayne Brown @Eroica3
Christina Logan @LoganTinaLogan
Emma @Realsinginmouse
Sophie Hay @pompei79
Lesley Roberts
Marion Pitman
Kerry Endecotte
Dale Who
Sarah Jane
Kathleen Ginieres
Dawn Fidler and Josh @JourneyJoshuas
Stephen Rodda
Denise Raphael Hopkins
Sarah Clarke @AcSarahAC
Everyone involved at @ArmadaCon

And of course, the whole bleddy population of Penzance!

My time with Algy is far from over, as said before but one thing you can be sure of though. It doesn't matter if you can only send a tweet, wish, word, thought, etc. IT COUNTS! IT HELPS! *ALL* OF IT!! Never let anyone try and tell you otherwise. The fact someone cares enough to make even the smallest of gestures can mean so much. I have been and continue to be so very blessed and lucky during all of this, to be around those who have given me so much support and continue to do so, to encourage, bouy up and give a good kick in the pants when needed. But I am very heartbroken to say that there are those out there who have no one to lean on, who have been all but abandoned by their families and friends who cannot deal with the 'C' word, or the fact the person affeced cannot function as they used to. That happens a lot and it is shameful to say the least.

For those out in the media, one word, one RT on twitter makes all the difference as well because people *will* and *do* take notice. And if that's just one other person who maybe curious to read further, or who might be finding themselves starting this journey or who are affected by it an any way who can be reached, then it's worth it.

So thank you to everyone from the bottom of my heart. The journey continues and so must I.

Love,

Hev XXXX

Algy's Demise - We're done with the CLINAC

2013-09-19T01:03:00.000+01:00

Today has been a day of emotions, tears, laughter, impatience and grateful goodbyes. I have completed my course of radiotherapy at The Royal Marsden and just now have to wait out the side effects which so far is more fatigue, mood swings, post neuralgic pain and sensory changes down the right side of my face than anything else. There will be a follow up phone call with my Clinical Nurse Spcialist, Charlotte in about six weeks but I can contact her sooner if needs be. Letters will be sent to my GP in Penzance and there'll be a follow up MRI scan to be done at The Royal Marsden on 11th December, then yearly after that to check on Algy's progress. Plus I maybe monitored for potential consequences from the radiation itself such as a 2 percent chance of developing a maignacy over 10 years, or problems with my pituitory gland as it is in the path of the radiation.

So that's the medical/physical stuff.

Bang. Done. Dusted...

Yet I'm sat here with a *crazy* dose of the munchies and am feeling quite agitated. As per my last post, this is an emotional journey more than a physical one and I am going to be spending an awful lot of time trying to figure out where to go next with this and what it will mean in the long run.

Certainly, one cannot possibly go through an experience like this and *not* be changed in some way or another, but whether that change is permanent or we then slide back into old routines, attitudes and habits will depend on the individual. We're all different with how we react and deal with life changing moments as we grow and slide along life's often poorly greased and uneven path.

Algy to me has been a bit of a wake up call and a gentle reminder about the fragile state of our own mortality. Now ok, not once has Algy been immediately life threatening but there's always that risk he can become so and of course, anything growing in the confined space of the skull and spine is not a good thing, no matter how slow growing or innocuous it might appear. Tissue becomes compressed and damaged, often perminantely so and sometimes with fatal consequences.

Then of course there's all the other stuff, the social, medical, personal, financial, employment, welfare, self image, relationships, the whole shebang that still hasn't completed it's way through my addled head yet. The impacts of all the above, the potential consequences, the limitations, and maybe the opportunities, I don't know. Each time I blog, I realise that there is so much that has yet to be digested about all of this, so much to be understood in terms of change. An exploration in to an individual 'Undiscovered Country' if you will.

Many wax lyrical I guess about the meaning of life especially with events like this, the closest of which that makes any sense to me would be a la 'Monty Python', as well as my own personal and spiritual leanings - and it seems similar in the fact the Big Eight are involved; birth, growth, masturbation, sex, taxes, relationship/divorce, old age and death - yet for all the commonality of these life events, they can mean so many different things to so many people.

And the same applies to those going through any huge life change, no matter what. With me it's about finding another place to be in terms of usefulness and the future, to someone else it's about relationships and so on.

How's about cultural and social expectations? The cultural expectation of 'having courage' that when before it could have been a compliment to me, now becomes something more patronising, along with ' stay positive and not worrying about the small stuff'. You only have to read my last entry or two here to know my opinions on that! But then someone else will have a different take and I would love to know what others feel about those sentements both as givers and recievers.

It actually was suggested I write a book about my exeriences with Algy by someone who works with one of the charities I (try to) support and I think I would like to give that a go. But putting together a book is vastly different to scrawling in to a blog. My book would (I hope) be informative, humourous, emotional, factual, honest, knowledgeable but not just about me but also others on a similar journey. I would want to have little cartoons of my relationship with Algy, accounts from those who are affected by their condition or someone's expereinces with those they know who are affected by a brain tumour. I want not just a jolly praiseworthy account of a community being brought together to fund raise but also what a pain in the backside it can be to live with someone affected, and also touch on those very difficult questions that have to be faced sometimes when it doesn't go right.

So here's the thing. A call out to those affected in anyway by a brain tumour, whether as a patient, friend, carer, professional, family member, fund raiser, community worker, lover, you name it. I want to write that book and I want to write a book that reflects *our* own personal journeys. Ok, loads are out there in blogs, self help books, text books, professional work, papers and what have you, but I don't often see much from those with brain tumours themselves outside of what you might read in forums and groups. Some are very private and personal stories, a lot of course carry pain, for example the differences say between paediatric (childhood) brain tumours and adult ones, having as a parent/adult to make a choice about treatment that could result in long term damage but which also could give a child a fighting chance to live?

There's also room for humour as well as drama, and yes, I would like to have inserts with 'brain facts' and so build up a picture with my story as part of it, although in a way it'll be a central to a type of written 'Venn Diagram' to which I hope, an honest but empowering account of what being affected by a brain tumour is all about.

So how's about it chaps? Are we in.....?

Meet Jonathan Pope-Mask, my Thermoplastic Gimp Companion..!

Not necessarily my view but some might find meaning with the words below ;-)

The Galaxy Song - Monty Python's Meaning of Life 1983
By and copywright to Eric Idle and John Du Prez.

(spoken)
Whenever life gets you down, Mrs. Brown, 
And things seem hard or tough, 
And people are stupid, obnoxious or daft, 
(sung) 
And you feel that you've had quite eno-o-o-o-o-ough, 
 
Just remember that you're standing on a planet that's evolving 
And revolving at 900 miles an hour. 
It's orbiting at 19 miles a second, so it's reckoned, 
The sun that is the source of all our power. 
Now the sun, and you and me, and all the stars that we can see, 
Are moving at a million miles a day, 
In the outer spiral arm, at 40,000 miles an hour, 
Of a galaxy we call the Milky Way. 
 
Our galaxy itself contains a hundred billion stars; 
It's a hundred thousand light-years side to side; 
It bulges in the middle sixteen thousand light-years thick, 
But out by us it's just three thousand light-years wide. 
We're thirty thousand light-years from Galactic Central Point, 
We go 'round every two hundred million years; 
And our galaxy itself is one of millions of billions 
In this amazing and expanding universe. 
 
(waltz) 
 
Our universe itself keeps on expanding and expanding, 
In all of the directions it can whiz; 
As fast as it can go, at the speed of light, you know, 
Twelve million miles a minute and that's the fastest speed there is. 
So remember, when you're feeling very small and insecure, 
How amazingly unlikely is your birth; 
And pray that there's intelligent life somewhere out in space, 
'Cause there's bugger all down here on Earth!

Algy's Demise - A Painful Epiphany

2013-09-13T16:30:00.001+01:00

I've only got three more 'bolts' or doses of radiation to go before I finish next Wednesday (18th Sept) and will be glad to get back to Penzance the week after. But how has this part of my journey gone?

One thing I will be forever grateful for is that I haven't felt really any worse throughout my stay in London. Indeed, I have made the most of my stay with the anticipation I would get worse as time goes on. But so far, no seizures, no hair loss or burns to my scalp. In the last week though, I have started to get more fatigue, more dizziness and disorientation plus much to my chagrin, a damn sight more moody with hot flushes. But that could happen anyway. Goodness knows I'm at the right age and have been peri-menopausal for ages!

What is certain from infomation I have been given, it will be years, possibly up to a decate to see if/how well the radiation has worked, whether Algy will be stopped in his tracks and maybe even shrink. Apparently 50% of tumours (I presume it is the non malignant meningiomas) do shrink after a while but this again may not be visible for a long time.

My journey with Algy still has a long way to go and will be a lifetime one. But from what I have experienced so far is not all negative. There has been a growth of another sort, but I'm not sure what that is yet in terms of personality etc. Certainly one thing I would *love* to do is get some form of a life back in terms of maybe improving skills, the arts, I don't know. I am realistic enough to know it is *highly* unlikely I will ever be considered for paid employment as I have to be realistic about whether I could sustain a job, to be able to give it the time and energy that is needed, whether an employer would risk that. But then, there's not much in Penzance in terms of employment for the young and the fit, never mind a knackered 52 year old ex-nurse with chronic health problems. Any ideas folks on what I can do to while away the hours? I do like showbiz ;-)

So that'll be the next road I suppose, to figure out what I can do for the rest of my life however long that will be. I would love to write for a living, but everyone would and my writing style isn't that fabulous! I would love to work maybe in the media but being a roving reporter would be out. Being 5 foot, overweight, grey hair and if not for the wonderful existence of lady blade razors, would a moustache and beard thicker than Dave's! Maybe local radio? But I speak too fast, have too much of an accent and would spend most of the time talking gibberish.

However, that idea not completely impossible. I was recently interviewed by two wonderful ladies called Eileen and Claire Bullimore for a radio show they host on Thursdays via the internet community radio station Croydon Radio. The first part can be listened to here Brain Tumour Thursday Radio Show interview pt 1 and the second part here Brain Tumour Thursday Radio Show interview pt 2 .Claire is a brain tumour survivor, who like me had a 'benign' meningioma that she had diagnosed after her optician picked up signs on examination, even though she too suffered headaches for years! For this, Claire had surgery which has left her with cognitive and memory difficulties, as well as the usual fatigue, but for all of that, she is a vibrant, lovely young lass who has a great love for Hazelnut Latte!

Claire spent her working life in PR and did try to get back to work after her operation and recovery but could not sustain her ability to do so because of her fatigue and other problems that she had been left with. But rather than do nothing, she along with her lovely mum Eileen, who is a fabulous support (and Claire's carer) the two have become a tour de force for a positive, uplifting attitude towards brain tumours. The proggy is two hours long with great chat, info, guests and music. There's also a 'shoutbox' on the website you can leave messages during the program as well as tweeting via the hash tag #braintumorthursday or via @braintumouraunty. Give it a listen, well worth it. If you can;t catch it when it's on, between 12 - 2pm Thursdays, it's available for podcast the day after and can be found via the Radio Croydon website. So new beginnings can and do happen.

However something happened to me in the last couple of days which has left me feeling cold. I've had another wobble over the last 48 hours down mainly to mis communication and the growing realisation that Ye Olde Midlife Crisis is hitting as well.

To explain. Very sadly, David's uncle died recently in Scotland and plans were made for his ashes to be scattered in Cornwall. No one expected to do this until the new year but all of a sudden Dave's parents got a phone call to say his uncle's wife, daughter and boyfriend were down and the ashes were to be scattered the next day at Prussia Cove. With the flurry of getting there and all of a sudden a post committal dinner, someone forgot to let me know. I in turn had been trying to get a hold of Dave as I was having a rotten day with pain and depression setting in from fatigue. When I did get through I got a 'can't talk now, been scattering Uncle David's ashes and am at a dinner' or somesuch.

Not only did that come as a bit of a shock, I felt I had intruded on something and felt embarrassed. Then I remembered I AM FAMILY! SO WHY WASN'T I TOLD!

In true fashion, I blew my top big time and began to panic as it hit me, if my own husband could be so apparently dismissive of my feelings and need to know, what the hell was I going back home to and started to panic even more.

Now some of you will say maybe no one said anything because they wanted to protect my feelings or what have you. It's nothing of the sort but an actual family curse of poor communication, of when information needs to be given etc. There was an assumption that information had been passed and also a lack of urgency to do that. I also began to feel I had been left out of the loop because well, I'm just not there. That and a world of frustration, pain, disappointment that has built up over many years - for example and I know this is nit picking, my nursing colleagues never even sent a goodbye card when I had to leave on March 2011. The small medical records office where I had been secomded to for the remainder of my employment were kind enough to give a little gift & wished me well. But it still hurts for some reason.

I also started to think of the times in my life I have been excluded or pushed aside, or haven't been confident enough to say 'Oy!', when I have been basically and patronisingly told in various ways I am not 'quite good enough'. A lot of childish resentments came up and I BLEW. Sadly for Dave, he and his family got reamed across Facebook because I had had enough and again I couldn't get a hold of him. And again I panicked. Is this what I want for the rest of my life? Do I just go along with this and accept it? Is is all that I am and mean to those around me? Why was I getting more connection, passion, interest, bigger world view, information, self worth and support from the internet? Why could I not get that from those around me without having to almost beg for it at times? Is my perchance for having a big mouth just a means for getting attention for myself rather than promoting a cause and spreading awareness? What the hell is so wrong with having a big mouth and getting some attention anyway?

Did I really want to go back to this? Is is fair on Dave to be lumbered with an overweight, temperamental old boot who can now grow a beard thicker than his if I let it happen? Why was I never cool enough, clever enough, pretty enough, assertive enough, brave enough? I have been well blessed in life but there has always been a lack of emotional fulfilment along the way I have passively accepted because plain looking girls and women have no right to expect such demands.

To do and be otherwise is vain - which is why Janice Ian's 'At 17' sums up so well how I felt at that age and rightly or wrongly still do now. That was the gender expectation of my Mother's generation which sadly has filtered down to me. In one very horrible blast of clarity I saw that my remaining years would possibly slide into something terribly...empty, too sedate, too dull, redundant and useless. I am and have become another slightly wornout footstool in the furnishings of life both to myself and those around me. I had been hit by the Huge Self Pity Bug of course but dammit I *WANT* flowers, chocs, diamonds, sapphires, romantic walks, adoration and praise! I want LIMELIGHT! For the famous and fatuous to call me Dahlink in their midsts! To be invited to parties and dinners again! I want.... and so on! I'm revisiting my adolescence except this time it's called the menopause which is as bad, if not worse as it includes 'memory loss of the recent events' sort. And I am older and one hell of a lot more cranky too boot!

I know this is getting away from brain tumours but actually it is very relevant. Again when faced with a life changing/threatening/endings, the physical bits sometimes are not as painful as the emotional ones. All the way through this blog my feelings and 'whinges' come up frequently. At first I felt embarrassed when I read back through to re edit this blog and some of it wasn't relevant, but a lot is. Serious illness/injury/life change will throw up a whole bunch of deeply buried feelings/thoughts/memories that have to be faced as well. Some 'categories' would be

Hurt
Unresolved issues
Embarrassment
Lonliness
Umbrage (I kid you not!)
Loss of self worth
Anger
Sadness
Reality Checks
Panic
Accepting life changing events
Having to put all the above and so much more in to context.
Fear, shame and resentment of past, present, future.
Loss of ideal image of relationhips/lifestyle.
Vulnerability.
Loss of respect from self/others, 'persona non gratis', 'pity party'.
Facing a new, scarier and often more hostile world.
Facing changes within yourself.
The Future!

It's not just having the tumour and phyisical symptoms & signs. It's everything else as well. But getting and keeping a realistic insight is also painful because for all I might complain about how I been treated in the past, I also have a lot I need to appologise for as well. The term 'Old Sins Cast Long Shadows' is something I heard on my favourite BBC Comedy drama 'Death in Paradise' from an episode where a Roman Catholic priest was lamenting his past. And the saying is true. Karma, the past etc can and does come back to bite you on the ass and I am often left feeling cold with shame at my blatant stupidity and downright bad behaviour both past and present.

I am also having to relearn what the word 'confidence' means and not feel guilty for being more demanding and bolshy but also need to temper those feelings, strike a balance. I want my remaining life to be filled with love, laughter, passion, bright lights, the warm glow of my hearth, going for quiet walks with Dave that won't be broken by yet another phone call for him to go fix something and he is not confident enough to say no. I want us to become lovers again in the true sense of the word, in feeling if not in action. Dave is very affectionate but he finds it hard too. He has battled with a speech impediment and mental health issues all his life, that I have only recently realised had forced him to have to do a 'Spock' and reign in his emotions, so he wouldn't cry every time he's been taunted. Like me he tends to say 'yes' as he would feel guilty in saying 'no' as much as it is to help someone in need and is open to being used by those who otherwise wouldn't pay him a second glance and rarely pay him for his time. He is a very bright, practical man who has had to work hard at getting the confidence to develop his own skills and identity.

You should see him planning, designing, cutting and machining a model engine that works on electric, compressed air, and steam should we be able to afford a large enough boiler. All these skills are being lost now as machining is no longer taught in out schools. Dave has taught himself these skills but of course, it helps he comes from engineering stock but they are rare, prescious and require concentration, intelligence. He is a very quiet man as said before, but *very* sharp and I am ashamed at how often I too have underestimated my husband. Dave's family are fabulously eccentric, subversive and fun doing much to help their youngest son get though his life.

On my end, I am chatty (too much), an openly proud nerd/geek/anorak because that world is where I was welcomed for who I am, even though quite often in my life I didn't and still don't know what that fully means at times. I do crave acceptance and the need to know when I have done thinks right yet it's taken me the best part of thirty years to be able to accept a compliment at face value. I have always been well fed, clothed, safe, warm and with a roof over my head. But for all that, it has been lonely and scary. Dave and I both have this in common from different angles of course. My brother is the 'carrier of the gene pool' on my side and has a wonderful family of his own who are confident, outgoing, bright, energetic and loved whereas I have declined parenthood as I really do fear contaiminating the next generation with my baggage and have been told in the past this was a wise thing to do. Children are too precious to me to inflict my personality upon.

Where all this rambling is going, I don't know. There is a point in there somewhere and it *is* part of your experience and recovery. Life itself may not change but certainly your take on it will do. Aging and experience does that as it should, but at 2am on a wet Thursday morning my take on life shifted a little with the painful epiphany that I had not made the best of it by requiring something different from both myself and those around me...

..And also the fact I have been lucky enough to be given a second chance and I do not want to waste that opportunity. Ever.

Algy's Demise - Notes on 'Helpful Suggestions' and Other Such Nonsense.

2013-09-03T00:24:00.000+01:00

Y'know, I taught Basic Life Support for a number of years, as well as clinical teaching and assessing as a Registered Nurse (ENB 998 for the old guard, as well as a DipHE in Health Care of course) and would love, in theory, to continue to use those skills in one way or another, but there are difficulties. Some of the biggest problems I have are set out below.

a) For example, I tried contacting the St John's Ambulance eighteen months ago, having to go through a website to do so, and got a letter back after a year inviting me to go on a training course..if I was fit enough. No 'who are you etc' nothing! What the hell ever happened to just being able to join a local brigade! Now as said before, you have to find the website and hope to heck someone might phone or send you a letter months later!

b) Yet no one wants to be associated with a washed up knackered ex-nurse obviously as I had been turned down for work such as a Level 3 NVQ Assessor in Health Care with my local college (Yes, Penwith College in Penzance, I'm looking at you!!!). This was not long before I had to retire and now of course, my qualification is out of date. So there's another skill I have learned, funded by the NHS which has also gone to waste.

That's a few examples of how I have tried to find other ways of using my skills but to no avail. Of course there are other problems that I have had to face up to but others obviously haven't, such as my energy levels and how I *cannot* function on some days no matter how willing I might be to try.

I can sympathise with the fact my skills are going to waste but I do need to let you all know I have tried, and still try to be productive and useful. However I don't know which is worse, having so many keep suggesting maybe I can do such and such, or being told I can't do such and such. Both are equally irritating because none either understand the nature of my illness or what *I* still have to learn about my limitations and often I feel upset and demoralised because siuggestions from either camp, and can often leave me feeling useless and tearful.

Maybe I could lock both sides in a room so they can battle it out and then get back to me with the results.

Other news just in. Things continue to progress but I am piling on the weight! Must try and reign things in a bit as it is very easy to undo the good work I have achieved with my weight loss, so will get back to proper eating and leave off the choccy cake etc.

I'm nearly two thirds of the way through and so far I've had a great vacation but these past few days have started to feel more wobbly than before and the neuralgic pain on the top of my head is a little moire intense at times. I'll be seeing the clinical nurse specialist on Wednesday and will discuss the above with her. It means some of the side effects arenow starting to become a bit more noticable.

Have had a fabuolus couple of weekends in Chichester, staying with a friend and this has been a nice break from London. Have gone for toddles, walks around the beautiful catherdrals in Chichester and Arundel, seem some fab art exhibits and avoid being stung by numerous Sussex wasps, and seen a fantastic production of 'the Ristable Rise of Arturo Ui' with Henry Goodman in the starring role. I love being a 'luvvie' ;-) But have as said before been feeling the effects of radiotherapy catch up as I needed help getting through Chichester market last Sunday. My head was spinning and the feeling of all but falling came back with a whallop but did fade off to the usual feeling of being wobbly.

Note: If you live in the UK have a DLA/Employment Support Allowance Letter (income related), scan them in, shrink the image down to 'credit card size', print out and cut around the letter and pop in to a wallet of the type you get for rail cards etc or a small plastic sleeve (look in an office supply shop) or better still get it laminated to that size. You can carry this about and use it as proof if entering anywhere etc that may require such as ID.

I have found out that for DLA certainly most places will let you or your carer in for free. But make sure you ask any museums, galleries, productions anywhere if they provide concessions for disabled persons as this info may not be displayed. I've seen concessions for OAP's etc but not for disabled and had to ask, plus it was amazing how many of the staff in box offices etc were *not* aware of any discounts. So don't hesitate to ask and use your DLA award letter as proof. Sometimes a disabled person's railcard might be accepted as well but check beforehand.

Laters XXX

Algy's Demise - Ten Days in and feeling like Sierra Hotel India Tango..

2013-08-20T15:40:00.000+01:00

Just had my 10th dose of protons/photons/electrons/whatever about an hour and a half ago and am currently taking advantage of the free WiFi in a Pret a Manger in South Kensington. Nearly all of the commercial places I haunt in these parts of London are subscribed to The Cloud, which I registered with some time ago as a train goer. Quite handy but you have to give it time to crank up and not make the mistake of having your O2 dongle plugged in at the same time.

I've also had another wobble and started whining on Twitter this past Sunday, probably from doing too much again with the result and getting overtired which instantly drives me in to a spiral of depression more quickly than Algy can. This was brought on by my trying to conquer Oxford Street earlier on that day. I didn't get up in time to go to the local branch of my church opposite the disabled entrance of the Natural History Museum, as they start their meetings at 9am and there is no way I am capable of waking up at 7am to get there! So off to Oxford Street I went in the afternoon, as I thought I would have a go as revenge for the awful time trying to get up there last year on a cold October evening of which there was no way I could do without a carer and will still need one for evenings I think.

It wasn't too bad, albeit crowded but not as packed as last year. At least I could see who was coming at me and only had to use stick once when a crowd of iPod ear clogged chatting humans with their offspring on skateboards threatened to crash into me. As a result though I have done too much which is having consequences plus I think the effects of radiotherapy are just about starting to kick in with fatigue.

At least now when this happens I can recognise it for what it is. I have a group of very good friends on Twitter (you all know who you are @gillyh1, @Science_Fan to mention a couple and everyone else there!) one of whom was very patient with me Sunday evening as I unloaded and whinged big time to her via the direct message facility on Twitter. I am also meant to be on a 'Twitter break' which for me means a few re-tweets and the odd tweet if very important. I am also avoiding timelines I can get very emotional about for no good or rational reason. But then I can *not* completely stay away from the place which is not really a good thing!

Anyway, I digress again.

Yesterday, even though I felt (and still do feel to a certain extent) pants, I had the delight to meet up with two exceptional ladies who run a radio show on Radio Croydon, an internet based radio station set up to serve the community after the riots there a while back.

Eileen and Claire Bullimore outside Cafe Roma near the Royal Marsen in Chelsea

Claire Bullimore is a very bright and beautiful lass who sadly was also affected by a 'benign' brain tumour and again as I hear about all too often, her years of migranes etc were pretty much overlooked by her GP, who put it down to 'hormones'. Of course no one looked at other potential reasons for these headaches, plus Claire's eyesight began to be affected. The person who picked up on this was her optician whom Claire had asked to check, and found changes at the back of her left eye that signified a tumour affecting the region of the brain where the optic nerves pass though.

Again, here's another person whose persistent symptoms were continously overlooked, then ended up being referred as an emergency for an MRI scan with surgery following closely after. Her mother Eileen is equally inspiring and helps Claire with her activities and supports her as only a mother can :) They are both on twitter as @BrainTumourAunty and @pillionqueen as well as having pages on Facebook under Claire's name and 'Aunty M Brain Tumours'.

Claire is now affected by a condition called 'hemipoplia' post surgery where she can only see the left half of her field of vision in each eye, which is the best was to describe it. Also her operation has left her with cognitive problems with memory. concentration and thought processes, plus of course the inevidible fatigue common to those of us with tumours.

Yet the two of them run a fantastic radio program called braintumourthursdayradio It has now been extended to two hours frrom 12 midday to 2pm and can be picked up over the internet on Thursdays with interesting chats, topics, guests, music and has an interactive chat board via the Croydon radio website or via Twitter where tweets are out tweets during the program. Thursdays on Twitter is 'Brain Tumour Thursday' where facts, fugures, awareness etc are tweeted by those of us involved with brain tumours, hopefully out to the general public.

The two wanted to meet up with me and take an interview but did so as a friendly chat, and recording snippets. Apparently my dulcit tones will be broadcast over the net on Thursday 29th, so tune in. If you miss the program you can listen to the podcast later in the day. Croydon Radio is an internet based radio station which runs a small studio which is free to charities and community groups. More about Croydon Radio can be found here http://croydonradio.com/ and are @CroydonRadio on Twitter.

After having a lovely chat with the ladies, they came with me to my appointment and were allowed to see the machine Algy is being fried with and will be getting a photo of the Linac accelorator machines the Royal Marsden uses for their own use, as soon as I know where to send it! I will try to get across the river before I go back to Cornwall and take a peek at Croydon, and hopefully meeting up again with two very inspirational ladies who bring a lot of postive information about brain tumours to a wider audience.

And lets look at positives. I have mentioned this before. Right now I have calmed down but earlier this morning cursed the world, the universe, God and my mother as I failed miserably to hang out some washing as the line broke, and then had an impossible battle with a small clotheshorse in order to hang out two bed sheets and I haven't even put my smalls out to dry yet.

When I'm in a mood, I have to ride through it, afterwards suffer the embarrassment of the consequences then try to become a functioning adult again. I find some of the following helps.

* Tonnes of chocolate to get those endorphines going.
*Favorite music, weepy chick flick and chocolate.
*In my case, a sympathetic shoulder to cry on.
*Any food that isn't good for you, especially chocolate.
*A favorite photo or book and chocolate.
*Meeting up and communicating with exceptional people, some who have had similar experiences, some who have inspirational ideas/activities which help give ideas, hope and a sense you're not alone and completely insane. And chocolate.
*Chatting with a grand dame of 84 on the No.49 at South Kensington who it turns out was Princess Diana's acupuncturist and counselor, who imparted wisdom which cheered me up no end. I might get her book 'The Voice of Silence' (by Oonagh Shanley-Toffolo).
*Having a bloody good cry followed by chocolate.
*Avoiding at all costs almost twitter-stalking your favorite celebrity in order to get some comfort for your blues. I had to stop the needy habit of twitter friends asking for sympathy tweets, as nice as it is. The celeb in question is just that, a favourite entertainer, not my therapist!
*Cultivating a non judgemental insight - when you're able to - towards what you go through so you can learn from and manage it better. Followed by chocolate.
*When you can, set a small goal for each day. Mine is to try have a toddle and make a day of my radiotherapy visits, so I'm not just going in to town to be zapped and and head home straight afterwards, but can enjoy something from the day when I feel up to it. Plus not eat *quite* so much chocolate.
*IF YOU NEED TO, DONT FEEL GUILTY ABOUT HAVING A REST AND TELLING EVERYONEONE TO SOD OFF. As much as we do need encouragement, sometimes we need time alone as well. Plus lots of chocolate.
*If you can and have the energy for such, go for walks or partake in any physical activity you find relaxing. Then stopping off along the way to get some chocolate.
*Seeking professional help if needed of course. I will be seeing the specialist nurse practitioner tomorrow and will tell her I am starting to get depressed. Part is Algy but some is also missing home and still trying too hard to find purpose. After which I'll be stopping off at Cafe Roma for a large cup of their hot chocolate.
*The biggest help for me of course is writing this blog, and again having some very wondeful kind, loving and very patient family and friends.
*...and chocolate!

What helps you through the rough times? Do you want to them share here? It might help someone with their hassles as well.

Right, I'm off to self medicate with some Ben's Cookies (Chocolate centred of course) from across the road by the South Kensington Tube Station!

Algy's Demise - Of the No 28 and 49 Buses, Cafe Roma and Side Effects...

2013-08-16T00:08:00.001+01:00

I've just had my seventh dose of protons today (15th August) and find this first week has gone quickly indeed. So nuch has happened too in the last seven days, from the very sad loss of a dear friend from peritoneal cancer to the joyous news today that my niece Bethan passed all her A Level exams with straight A's in her subjects. She will be starting out soon at Reading University to study speech therapy. From death to the promise of a new and exciting future, all in seven days.

Yet I feel I've been here an age as well, now honing the craft of bagging a seat on the No's 28 and 49 buses to and from Onslow Square and Kensington High Street where I have to change from one to another. Also I braved a trip to Camden 'Tahn' last weekend, having a womble about plus indulging in a fabulous choccy brownie and ice cream cake in the World's End Pub. Ok, so this is sounding like a travelogue and in a way it is. There's not much to report about Algy or radiotherapy at the moment except I have been treated on both machines at the RM, the Lederman and Joe Ford. Both doing the same job.

I have got in to a bit of a routine, one of which is a place you get to before the hospital on the other side of the road, called Cafe Roma, where I'll stop to have a hot chocolate drink and maybe a muffin. It's a classic little cafe where the owner will sit outside and chat to customers and friends, and will greet me when I come in. I notice it's frequented by other patients of both Marsden and Brompton, by the subtly disguised IV Cannulas and lines in their arms. So a good recommendation in my book!

I am also getting to be a bit of a dab hand with London's most classic above ground transport but still liable to miss my stops if there isn't the pleasantly recorded voice announcing which bus stop one is approaching available, but usually I only miss by one stop. Kensington High Street I've got my head around now, remembering I *must* cross the street to get my connection in either direction. Also when needing to get groceries, I am *almost* able to use that bloody self checkout thing in the Tesco's Express there without setting off the alarm, although why those damn machines won't always accept the Queen's currency I do not know! It is a somewhat discomforting experience to have everyone staring at you while the shop assitant is politely trying to figure out if you're stupid or trying to commit fraud!!

If there is anything to report about Algy. it's that I did have a bit of a fitlet one evening earlier in the week when a rush of emotion such as suddenly feeling jealous, angry then quite confused happened. I was on Twitter at the time having a wonderful chat with a few friends, but had to stop as I realised what I was experiencing was a precursor to a wobble. I spent the rest of the night feeling rotten and today, a couple of days later, am quite tired. I've also pulled a muscle in my left calf and have eaten far too many choccy based foods which makes me realise I urgently need to get back on track with my diet, else I will easily undo eighteen months of hard work of shedding five stone and I need to lose another five to get down to ten stone. However, one can still have a bit of a treat surely...!

Also the neuralgia is a little more noticable on the top of my head and the right side of my face prickles more than usual at times, but that might happen anyway so am not sure if it's really due to the radiotherapy at this time or not. But I am keeping the staff informed just in case.

So all in all, a bit dull for now.

Algy's Demise - On The Importance of Having Purpose

2013-08-12T12:40:00.002+01:00

Back to 'The Office' this evening to start another 5 days of protons being fired through my head.

I've had a relaxing couple of days with having the 'weekend off '. Saturday I went up to Euston Station to meet an online friend who is a great fan of actor and TV presenter Alexander Armstrong, and who had the great joy of finally meeting him the previous week after the 'I Know Your Face' final on ITV. She is a lovely lady who is very forthright and also for the most part out of her house, wheel chair bound. She suffers from multiple sclerosis which makes my problems seem miniscule if you put it all in to perspective.

We had a lovely late lunch at a nearby indian vegetarian restaurant and 'fangirlied' over Alexander (who likes to be called Xander) Armstrong and of course the magnificent Ben Miller!

But that aside, she is also a very clever lady who was completing a PhD on issues about dying but had to give that up due to her illness. And it got me to thinking, what is the most devestating thing one could lose when they become disabled and lose their livelihood as a result?

To me, it's not been so much about losing my job but losing my sense of purpose, my sense of usefulness I guess. Now I am very lucky in the fact financially I can (just about) keep my home. At the beginning, when I sat in an office at the hospital I was working in at the time, I was on 'secondment' until I hopefully would recover enough to return to my duties - I was only meant to be there for a few weeks, but it stretched in to five months. Sadly I didn't get any better and was assessed by an Occupational Health Physio who wouldn't even consider observing me walking with my stick in adjoining corridor next to the offices where I worked, let alone on a busy medical ward!

It suddenly dawned on me at that point it was all over. My career at an end as I could no longer fulfil my contract of employment. All I could do was just sit there and sob my heart out, eventually having to leave work early that day as I had become so distressed. I was not only just losing my job, but also what had pretty much defined my existence for thirty two years of my life since I was eighteen. I can even tell you the date, time and place I first put on the uniform of a nursing auxiliary as we were called back then. It was 9am in Gloucester Royal Hospital, Ward 18 up on the ninth floor of the tower block, on the 29th June, 1979. I started my training at The School of Nursing, Treliske Hospital in Truro on the 9th March 1981 at 9am. I passed my State Finals qualifying as a Registered General Nurse as we were known back then on the 28th May, 1984. My career ended on the 22nd March 2011 at 5pm in the Medical Records Department at West Cornwall Hospital in Penzance and I have been foundering ever since.

My biggest fear back then, and still is to a certain extent, was about paying the mortgage and bills, and how in God's name was I going to be able to do that? Eventually after several battles over a period of time, financially we're just about breaking even on a small pension, contributions based Employment Support Allowance and Disability Living Allowance, none of which I would have now if it were not for the help and support of a dear friend who is also an Advocate for the Disabled.

Anyone faced with such a drastic change whether being made redundant due to economic climes, suddenly dismissed for whatever reason will probably tell you the same thing. The panic and drama indeed does give way to anger, fear, dispair, depression and disorientation as to what one can do to survive. In my case it was all of the above and my losing my sense of purpose, which I am still trying to get back.

The hardest thing I have to do now is to continue to *try( and get my sense of purpose back, to have something that will get me out of bed in the mornings. I spend a *lot* of time on Twitter and Facebook, but before you decry that, they are my conduit to the world, a world I would otherwise have never known and in this last little while, a form of salvation in terms of having something to do and look forward too.

However, both have to be used with caution as they can become addictive and one has to remember all that one says in both social media, its out there in public, 'where no secrets are hid', as part of the weekly creed in the Church of England says. I have had a public meltdown or two on Twitter, the worst being last year in October when I finally hit that brick wall of brick walls, alone in a small hotel room near Paddington Station. My obsessions, and desperate attempts at being relevant, busy, sociable, plus managing a heart stopping 8000 miles worth of travel in the previous two months finally hit me like a granite block being dropped from a great hight.

I won't go into the details, the ramblings were in this blog at one point, and I have deleted them as they are counter productive and as it was a rant from someone going through the very horrible experience of reactive depression, which can still bite if not careful. I have also discovered that if I get a sudden change in mood & become a bit childish and irrational, that is also a precursor to a seizure of the most odd sensation.

But I digress.

I think a sense of purpose, belonging and usefulness is an essential human need in nature, it is to know our place in the social groups, societies and hiearchies that exist. While humans can and do function alone, there's no worse feeling in my opinion, than being excluded, no matter what the reason. And for all the best will in the world, excluded you do become especially when it involves loss of employment, function, status and defintion. I was defined by my career for the best part of 32 years. I was happy with that as it gave me a sense of esteem as well as fulfilling my need to be needed.

Don't get me wrong, there was and still is the genuine desire to help, ease suffering if possble for that person's sake rather then my own and be there if I can. But I am also honest enough to say my career was also my ego, my 'status' if you will, my reason for being, and it gave me a sense self worth in a way I never had before. And the stupidest of things highlighted that loss, no longer would there be annual work do's, Chrismas parties or dinners to look forward or be invited to.

To see all of that disappearing as one approaches the edge of the cliff, unable to stop, indeed speeding up towards that loss, can be too much to take in all at once. Some will tell you 'stay positive','chin up' and that's not a bad sentiment if you have the energy to do that. But also I have found (and I am ashamed to say have done this) these things are as much to reassure the person giving those sentiments, rather than for those they are aimed at. I also get a little embarrassed when people tell me that I'm 'brave'. I am most certainly not that, there'll be no gongs for me on the new year and official birthday lists for courage!

Be careful with telling someone to be 'positive' as the very sentiment you want to use to instill optimism to the affected person, might actually make them feel worse; being positive takes energy and that's something a lot of ill people just cannot summon up at will. I certainly can't. On my lowest days (profanity warning here!) I just want the world and everyone in it to fuck off and leave me alone, yet I am also a very needy person at times, finding muself craving attention on occassions too (not with this blog I hasten to add!) which is embarassing and not healthy. So sorry folks, you'll just have to be patient, understanding, but do not be afraid to let me know I am going over the top as well.

The questions of what use am I? What can I do? What can I *not* do? What about my future? Will I get a life back or will I remain on everyone's 'pity party' list of invites (easy to do, gushing sympathy is a lot easier to live with than scorn!) and will I only ever be seen by what's growing in my head? Will I only ever want *to* be known now as the poor woman with a brain tumour?

You can dump the 'pity' bit and as said before I am by NO means couragious nor brave - I leave that to those who have far worse challenges than I have with my wobbles and slight absence seizures - but I *do* have a big mouth so might as well put it to good use, and with that my sense of purpose is coming back slowly. I want to shout this from the roof tops. to make people aware that brain tumours, along with every other unsexy illness/disability is worthy of attention, of research, of concern, of knowledge, of all that and more. In short I guess I am getting my passion and activism chops back and can work towards contributing to others' sense of wellbeing and welfare again.

It's not much, this blog, and again, this isn't 'all about meeeee'. I just want to inform, to teach, to raise awareness, to share my experiences so others might get a taster of what is to come and yes, hopefully inspire those who read it. I want to highlight the difficulties and dangers with this disease with all it's 120 different tumours and 4 stages of agressiveness, but also to encourage a sense of hope, of dignity and empowerment. I will try to look at not so much what it is I cannot do in the future, but what it is I can (realistically) do and plan for. But for that I need help, which that sadly for people such as myself in these times of 'Austerity' is not aways forthcoming.

To sum up, personally for me, my greatest loss *has* been my sense of purpose and is the same for many others. So I am urgently trying to get that back. I am positive by nature and in the most part feel fine. But on my worst days when I am reminded of what has happened, the only thing I'll have left to fall back on *is* that sense of purpose and hope it will always be there.

Algy will always be in my head, but I hope over time he'll not always rule it.

Algy’s Demise - Rotating like a ‘2001 A Space Odyssey’ Spaceship to Strauss

2013-08-09T01:33:00.000+01:00

Ok, yesterday I didn't do a very good job of writing about my first experience on ‘The Table’ so here’s a bit of both yesterday’s and today’s (8.8.2013)

The first thing you have to realise is of course, is about being fitted with and wearing the mask or maybe a metal frame. Depending on what type of radiotherapy you're having, one therapy called 'Gamma Knife' which is often called 'radio surgery' is a high strength one shot dose aimed at the tumour concerned that is suitable for that treatment, with the intent of knocking it dead in its tracts.

Depending on this and what machine is used, a cage like helmet is fitted to the head by bolts which are secured tightly to the skin at points around the head and the 'cage' is then secured in a frame to keep the head absolutely still while the therapy is applied. Stereo tactic radiotherapy I think uses the same or similar frame as the doses are given over a short period of time. But at the Royal Marsden, with the protracted fractionated stereo-tactic radiotherapy I am having (usually 30 doses over six weeks) then a thermoplastic mask is used to secure the head.

Here's a link to the Royal Marsden pages about radiotherapy assessment with a video that takes you through the process.

http://www.royalmarsden.nhs.uk/diagnosis-treatment/treatment/pages/radiotherapy.aspx

The bench you lie on under the Linac machine is on a floor mount which rotates from side to side over about 180 degrees if needed, and the machine itself will rotate over the target area. The machine takes two x-rays so as to line up and target the position, with two points crossing on a map. This is to check again the head is in the right place and the target area is also worked out from the structure of the skull which also helps to accurately define the target.

The technician in the radiotherapy department was very kind to show me the movement of the bench and Linac, because obviously with my head encased in a plastic mask which also goes over my eyes, I can only feel the motion, not see what is moving.

Also she showed me the controls which are used for both the Linac and the bench to rotate them to the desired position. The Linac then fires the dose and will do so over several different angles so that all of the affected area can be targeted over the desired period of time. The bench can also be tilted up and down, and side to side, head or feet up/down although the positioning is very subtle.

The experience I had yesterday (7.8.2013), initially I had found it initially difficult to get comfortable when the mask was placed over my head, as it is hot at the moment and my skin felt sticky but today was not so bad and I was more relaxed to the point of dozing off! As they put the mask on, I was advised ot tuck my chin down a little so the mask could be secured in to place. My mask has no holes for the eyes and is very firm across the face, but there is an opening for my nostrils and mouth. The mask completely covers my head, down over the top of the head, the ears and down as far to my chin, the underside of my chin isn't covered.

It is very important from the outset if fitted with this type of mask, to let the staff know if you have problems with pain, and of course, claustrophobia or anything else as you are penned in very firmly. I don’t usually get claustrophobia, but I have had to learn to relax a bit with this. Of course if it gets too much, the staff will immediately stop everything and help you. It was stated quite firmly they do not want anyone to suffer unnecessarily.

I was helped up on to the bench and had to use a step ladder to do so (as I am a bit short!) and then laid down, with my head placed in a moulded head rest and my legs elevated a little over another moulded leg rest, to ensure the most comfortable position. After this, the mask is clipped on to the table and checked that it is firmly in place. The staff let you know that the bench is about to move and that you will hear the Linac rotate. It was a strange sensation feeling the table rotating and rhen hearing the Linac do the same.

The term 'field' comes up a lot when the technicians are sorting out the machine, and is used to decribe the areas which the Linac will target. When it was set into position, I could hear a clicking like a camera shutter going off but louder and this is the actual firing of the dose of radiation to the target. I did hear a bit of whirring as it then repositioned and maybe a sensation of shadows as it moved, but this is normal. In the background, some music was put on which I found soothing, and ironically for me being a science fiction fan, Strauss's 'Vienna Waltz' was playing as the machine moved, so I imagined I was in a Stanley Kubrick scifi movie...LOL!!

After about 20 mins, the mask was removed and it can be a little disorientating to find I was pointing in a completely different position than I started! And as said before today, the technician was very kind in showing me the range of movements the table and machine are placed. There are various monitors in the room mounted on arms so the staff can read various data etc. In the Royal Marsden sites, there are a number of machines of various types used for radiotherapy and vary because of the different range of treaments required.

A note to the wise though, if you still feel a bit disorientated afterwards, go and have a little sit down in the waiting area, there is water and you can make a hot drink if you wish until you feel ok.

Here's a link to the Royal Marsden web pages with photos of the types of machines used at the Royal Marsden sites, you can browse through the photos of the machines by clicking on the links below the images here.

http://www.royalmarsden.nhs.uk/consultants-teams-wards/clinical-services/radiotherapy/pages/treatment-machines.aspx

Here is a photo of the Lederman machine (Varian Clinic 2100C) that I will be treated with, bar three days due to the machine being serviced.

The Lederman machine, a Varian Clinac 2100C. Image copyright to The Royal Marsden

Next week for three days, I will also be treated with this machine named the Joe Ford machine which I think is a similar type to the Lederman.

The Joe Ford Machine. Image copyright to The Royal Marsden

Here are some photos of the machines in various angles I have picked up from the web to give you a rough idea of what happens.

Note the mask on the patient's head. It is a similar type to mine.

One of the many postions the machine is set so to deliver the dose at the angles required.

Ok, that's enough for me for now. Will try to look at some of the potential side effects of radiotherapy as was explained to me in my case later. Now I'm off to bleedin' bed! Feedback would be welcome by the way.

Algy's Demise - On Saying Goodbye, Protons and Hope.

2013-08-08T01:06:00.003+01:00

Well I finally got underway yesterday evening to London for my six week long radiotherapy, due at The Royal Marsden Hospital in Chelsea and didn’t blub *too* much when saying goodbye to Dave in Penzance. My brother and his family had also joined us in the afternoon, as they had flown in earlier from Liverpool to Newquay for a few days holiday. It was lovely to see them and also nice for Dave to be able to spend a little time with Trevor, my baby brother and his family after I had left.

Lovely pix by Dave: With my brother Trevor, sis- in-Law Lowri, nephew John and niece Bethan.

The journey was uneventful, no six hour breakdowns in the wilds of Wilshire or anything like that and we were only ten minutes late getting into Paddington. I had a fair amount of luggage with me and was contemplating how to get my massive suitcase from the top shelf off the luggage rack (I *hate* it when people move my luggage, especially on a shelf way over my head!) when a German family very kindly, not only got the accursed thing down but also helped me get my goods off the train, on to a trolley, in to a lift and up to the taxi rank.

Anyway, on to today.

The day didn’t start off too well since I have had news of a *dear friend who has peritoneal cancer, whose condition is getting worse and she is basically dying. She has been moved to a hospice for end of life care and attention. It was a heart wrenching conversation with her husband who told me he’s now finally accepted the fact she is terminally ill, a sympathetic but honest chat where all the walls tumble down and you're faced with the stark reality of losing a loved one. I have known this woman for the best part of 30 years both as a colleague and friend, her husband is a friend of Dave's and they are both like family to us.

What is worse is that my friend had recently been given the all clear from breast cancer, after being successfully treated for that a few years ago. But to me, she seemed to have been in decline ever since that time as well as having to retire early from her nursing career due to arthritis. I will miss her badly when she departs this life and am only sorry I cannot say goodbye in person because I am pretty sure she will be gone before I return from London. It’s a horrible irony that I am here getting treatment for a tumour in my head which should go well and yet my friend is dying from a cancer that can be fatal if not caught in time. I just wonder why she waited so long to get help.

Back to Algy.

I had an easy journey in to town after sussing out the bus timetables and spent ages hanging around the South Kensington Tube Station area. There’s a franchise opposite the station called Wasabi, a more sedate from of ‘YoSushi’ a Japanese eatery that offers sushi, sashimi and also ready cooked hot meals, some under a fiver if you eat in. Rather than go hijack stuff off a conveyer belt with the risk of knocking everything else off on to the floor, here you can do a ‘Pret a Manger’ type thing and pick what you want, pre packaged off shelves.

I headed back, down Onslow Street to Fulham Road where the Royal Marsden is and loitered around there until about 3pm, when my appointment was due, but actually it was for 3.30pm! Never mind, I went into their small café, had a drink of water and was then kindly pointed in the right direction of the Radiotherapy Department reception. I started to chat with a gentleman who had just finished his treatment but was I called in by a very pleasant young lass who would be one of the four staff I will be seeing a lot of over the next few weeks.

Now a lot of people have no idea about or a very negative, limited knowledge about radiotherapy and what is involved. Of course, it depends on what treatment is given, where and why. No, it’s not all pain sailing and sometimes with unpleasant side effects, but not nearly as bad as it used to be. What I want to *try* to do is take you through the process I am going though right now, which is the meat and potatoes of this blog. Of course, everyone’s experience and journey will be unique to their own situation but the routines and protocols that exist are similar.

I was taken into a private room where details were clarified, identification, did I understand what would happen and what was going to happen etc. I mentioned I am recording a blog of my experience and found yet again the staff are happy about that, especially if it helps demystify the process a bit.

One of my questions was about the machines used to deliver the doses of radiation. There are several types but basically are linear particle accelerators or ‘Linac’ for short. That means they act by exiting certain particles (protons) with large electrical currents and aim them at a target, in this case Algy, my tumour with the intent of destroying the cells that make up the tumour. This can be done at various levels of intensity (strength) depending on what needs to be treated.

Now let’s not beat about the bush, this is radiation we’re talking about, the stuff that leaked all over Chenobyl many years ago, but in this case, it is very much controlled and due to modern computerised technology can be targeted very accurately at an area without affecting too much of the surrounding healthy tissue. It still has to pass through the healthy tissue to get there, but the intensity is maximised at the target in a precise area. Think of the rays that you see on science fiction programmes that are targeted, fired and then hit something. Mr Spock then announces the Klingons have been neutralised. Ok, it’s nowhere near as dramatic as that, but you get the general idea.

The problem sometimes in the past has been the level of radiation used and the accuracy of the targeting. Back in the dark ages, the best anyone could work with were x-rays plus whatever the surgeon would find at biopsy, but over the years medical imaging using various types of x-ray and other forms of imaging have been developed, are less harmful and invasive than surgery although the often two are needed with some diagnosis. Nowadays people pretty much know about the availability of medical scanners and take that technology for granted. For instance there are CT Scanners (used to be CAT scan) that stands for ‘Computerised Tomography’ which is a type of x-ray that can show a more clear 2D image of the body in greater detail.

The next on from that would be an MRI - Magnetic Resonating Image - scan which is powered of course by a huge magnet. Anyone who has had an MRI scan will know of the somewhat claustrophobic tunnel you are placed in as the scanner passes around the body, as well as the loud clunking of the magnet as it spins! However, there are newer versions which are quieter, one of which I highlighted in my last blog entry and the images more detailed in some cases.

There are other scanners such as PET scans etc and the most advanced now can render 3D images which are so realistic and detailed. Some are even being used to accurately reveal the anatomy of the patient so the surgeon can know more precisely to aim his instruments etc so as to reduce again the risks to the surrounding tissues and to the patient by making the surgery more accurate and defined. Both can be used with a contrast dye if needed - (I need that to reveal aspects of Algy which otherwise may not be entirely clearly visibe) - which highlights particular types of tissue which shows up the ailments more clearly on scanning.

All this helps with assessing and examining the body. It has always been my contention that a good accurate diagnosis, with a scan done as early as possible, as any especially persistent symptoms is noted, will go a long way to saving lives, thereby reducing the damage brain tumours can cause where possible. It doesn’t always happen of course as sometimes symptoms are not always evident until the tumour can be quite advanced. That cannot be helped and it can be purely the luck of the draw.

Anyway, for this treatment, I have had a number of MRI scans over the past few years to check on Algy’s progress as he is slow growing, the idea being to put off any radiotherapy until necessary when he reaches an optimum size so as not to bring on any side effects of treatment that could in theory do more damage. Sometimes a balance has to be struck between the progression of the disease and both the side effects and long term consequences of treatment, as well as the effectiveness of the treatment itself.

After the interview and explanation of what was involved plus a little wait, I was shown to a room where one of two Linac machines are based and was impressed by the ‘space age’ feel of the room. I was helped up on to a table that is also part of the imaging programme that is used to do a final check on where everything is for the targeting of the beams to be passed through my head. This is being done over thirty days as Algy is situated quite close to the brain stem and stronger doses of raidtion would affect that very delecater part of the brain, so smaller, more frequent doses which can chip away is more preferable.

Once I was secured to the table by my now very tight and solid thermoplastic mask, the imaging check and treatment began, taking about twenty to thirty minutes or so to complete. It was a weird experience and I will write about that in more detail later, maybe in another post. It wasn’t painful, only a bit claustrophobic, but deep breaths and pretending I was in astronaut training helped. I was a bit disorientated afterwards, so have taken note to go and sit quietly in the main waiting room tomorrow until I can get my bearings.

I must change direction here for a bit and explain that I made the decision to get Algy zapped sooner rather than later, because I am of an age and level of fitness that I can cope with this better now than when I get older and/or Algy gets bigger. The brain will be ‘prematurely aged’ in part as a long term side effect but as I’ll be in my 60’s when this may happen, I don’t think I will miss out on much as I could get such symptoms naturally anyway. No one can predict the future only make the the best perparations for it as possible.

This is where hope comes in, the hope that Algy will be contained, that I can enjoy a quality of life without further impact for a while. As said before, a good and longstanding friend is dying as I type this and that breaks my heart. I know she invested in her future when she was treated for her breast cancer but sadly her life is being cut short from the metastases which have possibly resulted from that. However for a while she did enjoy a good quality of life and for that, I am grateful.

Another hope is, of course that I will live for a good few more decades yet and that when my time does come, I can leave this world with some semblance of dignity. Certainly of late there’s an underlying sense of urgency - I am not consciously aware of for most of the time - in what I do now, to get things done, to realise all that is on my bucket list, one of which is to *try* and remain useful, to learn, repent, and be a voice. Being an educator would be better of course, but only time will tell.

I have, as usual, gotten totally off topic and am getting tired so will leave the more detailed information about the Linac machines and what it feels like to ‘ride’ them for my next blog entry. Here’s a link for the company who produce the machine I will be using this week, the Varian Clinac 2100C series.

http://www.varian.com/us/oncology/radiation_oncology/clinac/clinac_2100c.html

And a brief explanation of proton therapy.

http://www.varian.com/us/oncology/treatments/treatment_techniques/proton_therapy/

Will detail more tomorrow but for now, I need to get some sleep!

Algy's Demise - Emotions are Not Logical Captain.

2013-08-05T23:19:00.000+01:00

I'm off to London tomorrow to start 30 days worth of radiotherapy to be administered over a six week period - 'fractionated stereotactic radiotherapy' for those who speak medical. My brother and his family are flying in Newquay for a few days holiday, will come down to Penzance for a quick visit which has cheered me up somewhat, and has offered to take Dave and myself to the station when it's time. I can't promise I won't be blubbing when I get on the train though.

These past few days have been quite emotional. I think this has been building up for a while and as someone has said, the wait has been long and now, it seems all of a sudden you’re off to get the very thing you have waited for, for so long.

But it’s not the thought of having radiotherapy I find is leaving me a little tearful but the fact I will be separated from my husband Dave for the best part of six weeks. This from a woman who has no qualms in taking off to the wilds of Ontario or navigating lower Manhattan on foot for ten days or so at a time! But that was for a break, a holiday. This is different I guess, I have no choice but to do this, it’s a time when you would want to be close to those nearest to you for comfort.

London I have no qualms about getting around, now I’ve sorted out the bus routes to the Royal Marsden in Chelsea and have learned that one must check the actual destination of said bus else one can go MILES in the wrong direction! It’s a city I have grown in confidence in getting about and is reasonably disabled friendly.

Dave and I do not live in each other's pockets either. We spend a lot of time living in two different rooms, me here in the front room tapping away on my PC and Dave in the back room lying on his front on the floor watching the soaps, the History, Discovery and God channels.

It’s an amicable arrangement born from a long and loving relationship, and we can both do what we enjoy without getting on each other's nerves, occasionally sticking our heads round the door when needed. As we live in a *tiny* two bed roomed terraced cottage, it’s as easy as pie to do. We have been together now for twenty seven years, almost the last twenty two of those married. This will be the longest we have been apart, except when we got engaged and I took off to work near Cambridge at Papworth Hospital for three months back in 1987.

So maybe that’s it. It’s the fact he won’t be in the next room or pottering about in the back designing and building yet another model beam engine, or fixing his motorcycle or be out in the back shed on his lathe, or at a nearby pub when I’m in London, he’ll be miles away.

Dave with Danny. Our other cat Sizzle was out.

Now considering some of you have spent months away from family in another country, I wonder what it is I have cause to whine about since Penzance is only three hundred and fifty odd miles away from Ladbroke Grove, and you can get there in under five hours (if you can afford the £160 return fare for that particular train that is) but it’s the physical distance between us in terms of emotional comfort and reassurance. Yes, we can phone, email and text, but it’s not the same as fighting over the duvet at three o clock in the morning, or yelling out of the back door dinner is ready or both of us waiting for the other to answer the phone or front door.

Dave has been very stoic and supportive, especially when he came to pick me up from church yesterday and found me in tears. The church I attend is small and the congregation very close, everyone there wanted to say goodbye and wish me well, but what really caused the flood gates to be opened was when two young boys from the Sunday School class I teach, came up and gave their nutty SciFi mad teacher a hug and said they would miss me. When that happened, it was definitely a ‘run into the ladies loos for a cry on the shoulder of a friend’ moment.

Six weeks is no time at all, the treatment I am undergoing isn’t painful and will only take about 30 minutes out of my day. There will be no needles, no surgery, just a bit of waiting time, a not so sexy hospital gown, lying on the table under a machine that looks like it’s been hijacked from a science fiction movie with my head encased in a rigid plastic mask secured to the treatment table (I get to keep the mask afterwards!). No, the scariest part of all of this will be getting there by bus and remembering *not* to take the wrong turn into the Outpatient’s department.

It is the separation and the hard fact I just can’t get up and go home when I want, and Dave just can’t take off from his job nor abandon our cats to come up to London when he wants either. It’s expensive and the train we can afford to catch takes a good six hours to get to Paddington. I have good friends who will be able to pop into town as they live close to London, and I am sure if I feel up to it, I will find plenty to do (such as keeping on top of this blog!) that won’t cost the earth or break the bank in the city. But it won’t be quite the same.

I will miss Penzance, the sea, Dave snoring, our cats baying for food, Causeway Head, the harbour, all comforting and familiar. There will be the traffic in London to face, the walking, the fear I will become ill on the bus, the negotiating around an unfamiliar area and it will happen that I will become tired, have increased seizures and maybe feel low as a result. All this is there in the background and he won’t be physically there to reassure me.

Maybe I am not quite as independent as I like to think I am and perhaps more scared than I care to admit after all.

Hair cut ready for Algy's frying.

Algy's Demise - The Journey Begins...

2013-07-24T02:18:00.000+01:00

Ok folks, it's crunch time!!!! The journey to Algy getting his comeuppance has started! Over the next few weeks, I hope to document my radiotherapy, what's involved and the effects of being away from home as the treatment will be taking place in the radiotherapy department of the Royal Marsden Hospital, Chelsea. I hope it will be informative and helpful but also I will warn you, will probably be emotional in parts as well.

22nd July 2013 (Btw at 4.24pm while I was being scanned, someone had given birth to a future king at a hospital in Paddington!)

Today, I had my radiotherapy planning scans, to accurately locate Algy and have a mask fitted which will bw worn each time I have a dose of protons fired from a linear accelerator in to the heart of the Algy Death Star!

Heading into The Royal Marsden Hospital on the Fulham Road in Chelsea.

It was hard work getting to the hospital from my friend’s place in Ladbroke Grove to Onslow Square next to that part of Fulham Road where the Royal Marsden is located. One had to take the 28 from Westbourne Park Tube to Kensington High Street Tube, cross over and get the 49 out towards Hyde Park corner and get off at Onslow Park. Except no one told me *which* 49 I had to get! I had climbed aboard the Hyde Park bus, eralised it was not going where it was supposed to go and ended up walking quite a distance from the Royal Albert Hall to South Kensington Tube. I realised it was the 49 with *CLAPHAM* on the front I was supposed to catch! Never mind, I got there in one piece and splurged on a ‘Pret-a- Manger’ lunch. At least I could get my bearings here and made my way to the hospital for blood tests.

Now the Royal Marsden is a world renowned hospital for the treatment of cancers and that also includes brain tumours, including my type of ‘benign’ tumour that can still be fatal, even if low grade.

I arrived at 1.45 pm for some blood to be taken to check my kidneys were up to having a contrast shoved through them. I had to wait a short while as one has to take a ticket and wait for that numb to be called, which I think is a good idea. My blood forms were there and I also consented to a trainee phlebotomist to have a go. She was a Registered Nurse who was specialising in this. The training at the RM for venepuncture is a little different as the staff there have to try to preserve fragile veins that have been subjected to chemotherapy. For general info if you speak medical or curious about sticking needles in to veins for medical reasons, here's a link to the University of Glasgow training pack for medical students http://www.gla.ac.uk/media/media_109800_en.pdf

After this I went off for a walk and bought a nice bracelet made from Swarovski crystal that has two small sparkly skulls from the local Butler & Wilson shop nearby. Ok a bit creepy but this is both symbolic of my ‘head’ journey and the potential demise of Algy to a non-growing lump, as well of course being a 'Pirate from Penzance' ;-)


A somewhat creepy but appropriate symbol for me.

I returned at 3.15pm to go through the mask fitting process and the two scans needed to check everything was in place and to plan my radiotherapy treatment. It took some time to find the correct registration desk and get checked in. While I was in the queue, the department called me on my mobile phone saying they were waiting for me! My terse reply of “I’m in reception trying to get booked in” had them hang up quickly and it wasn’t too long before one of the department nurses found me, proceeded to check my details and people, they do this on an electronic pad which the nurse told me took longer than actually ticking paper! Then I was eventually sent to the ‘Gamma Knife’ dept to complete the mask fitting.

I was a bit flustered by this point, as time was marching on and I was anxious about the possibility of missing one of the scans. They were doing all of them at once that day to save me having to come up from Penzance three times to get this done, but it did cause some confusion. Sadly for me, I was hoping to have 1 or 2 pix taken of the mask fitting while it was being done, but the Royal Marsden no longer allows pictures to be taken of any process now, I asked why but the nurse specialist shrugged his shoulders, he didn’t know either. So any images in this blog will be fished from the ‘net plus any I *might* be able to smuggle out!

The mask fitting process is a bit weird, not painful but for those who suffer from claustrophobia, it can be a bit confining. The mask is often referred to a thermoplastic radiotherapy mask of which mine is made from a Perspex type material. This type of mask comes in many sizes and shapes depending on which part of the body is going to be irradiated.

More about the mask fitting here http://www.macmillan.org.uk/Cancerinformation/Cancertypes/Brain/Treatingbraintumours/Radiotherapy.aspx#DynamicJumpMenuManager_6_Anchor_1

It's a flat sheet is first soaked for a few minutes in hot water and this one was applied over my face. There is a small hole that is stretched to open exposing my nostrils and mouth. I lay on a bench and my head was placed in a frame so I couldn’t move and the mask placed and moulded over my face. While the mask was setting on my face (It hardens and shrinks a little bit so be prepared for that) some Michael Buble was played to help me relax. the RM has quite a selection of music!

Yep, Jonathan Pope it is then, but my blue mask is better fitting!

It was quite a sensation as the two technicians gently pressed and marked around the areas where the radiation would be targeted. Also in my case, marker ‘bobbles’ similar to those used on suits for CGI effects are placed to aid targeting as my head will come up as a CGI on a computer. To that end, I have decided to name my mask ‘Jonathan Pope’ after Ben Miller’s character from ‘Moving Wallpaper’ where he has to wear a CGI body suit with hilarious results.

After this it was time to shoot back up to the CT Scanner department and have the mask placed over my face for as scan to check it’s in the right place for the zapping. The machine they had was a GE Lightspeed Scanner and the Techie bits I’ll post as a pdf somewhere for you to look at, but essentially it’s not just to locate Algy but to also start building up a 2 – 3D image of him. Again I lay on the table and my head rested into a frame where the mask was secured when placed over my face.

The GE Lighspeed CT Scanner

The procedure isn’t painful but the mask is very close fitting and because I was a bit sweaty, I wriggled my face a bit to get comfortable so my skin would stop pulling. Apart from that it wasn’t bad. When you lie on the table again, your head is placed in a frame to which the mask is attached, and to make you more comfortable your legs are usually supported by a shaped pillow. The scan itself takes about 10-15 minutes. The staff guides you through the process and usually you are given a call bell if you need attention.

After this is was then back down to the basement to the radiology department where the MRI scanning rooms are. I was met by a nice young technician, who checked I had no metal including any in clothing.

From previous MRI scans I have learned to avoid wearing anything with any metal bits, so usually only have to remove my bra otherwise it’s the dreaded hospital gown with the non fitting back that is ‘De Rigeur’ for hospitals. Also the staff go through a check list with you about any metal in the body, to check whether you have undergone any recent surgery or have stents in etc. Remember, MRI stands for ‘Magnetic Resonating Imagery’ so one does not want one’s metal dentures and watch suddenly flying off and hitting the chamber wall!

I has brought a couple of buds along for the trip! Well random! Isn't it! Isn't it Though! Please note the dressings on both arms, it does *not* mean I have become an IV drug abuser!

MRI’s by any accounts can be noisy and claustrophobic as your body is passed in to a narrow chamber inside the machine and they can be loud too. The ones in Truro and Derriford are literally old clunkers, not only with the buzzing of the scanner but also the loud rattle of the magnet spinning around as well! It can take up to 45 minutes depending on what is being scanned and as to whether a scan with a contrast dye is needed. I was given ear plugs to mute the sound of the scanner and also most departments will offer headphones with piped music from their radio or CD collection, or you can take in tour own CD. Mind you, the volume is never loud enough to drown out the scanner!

The contrast dye is made up of something called Gadolinium (Doratem®), a material which is visible to magnetic scanners. This is needed to pick up various tissues which may not be visible under a routine scan which shows up Algy quite well and is given intravenously. It was for this I had my bloods checked earlier to ensure my kidneys would be up to excreting this over the next couple of days as it remains in the body for about 24 hours. After waiting for a while so that the gadolinium had time to circulate around my body. Here's a wiki on the stuff for those who speak chemical as well as medical. http://en.wikipedia.org/wiki/Gadolinium and and general info on medical usage http://www.ajnr.org/content/31/6/981.full

The MRI scan is used for diagnosis, clinical observation and in this case, again as part of my treatment planning. I was quite surprised at how quiet the machine at the RM was – a Siemens Magnatom Aere – which is quite new and takes a better computerised image.

The Siemens Magnetom-Aera MRI scanner.

More about the machine can be found here http://www.healthcare.siemens.com/magnetic-resonance-imaging/0-35-to-1-5t-mri-scanner/magnetom-aera

The scan took about fifteen minutes as only the contrast scan would be needed. When it was done, I was taken back to my changing room and given some time to recover my wits! After this I left, took some pix of the exterior of the hospital and headed back to the South Kensington tube station area where I had a salmon teriaki for £5.65 at a place called Wasabi and it was bloody delicious! The only downside, I was approached by a bloke trying to sell me a battered magazine and asking for money so he could eat, yet he was smoking a ciggie from a packet that cost more than I paid for my meal. My 'no' was met with his calling me a twat.

The journey back to Ladbroke Grove was no less truamatic as again I got on the right bus (The 28 from Kensington High Street - forgot to cross over the road!) but headed in the wrong direction and was almost at Wandsworth before I realised that for the second time that day, I was heading off in the wrong direction so had to change buses again! Plus it being the hottest day of the year, I was pretty shattered when I got back to my digs and to cap that, O2 mobile dongles to NOT get good signals in Ladbroke Grove and spent a frustrating evening trying to use the internet on something that was slower than a tax refund!

I am back in Penzance now but have to prepare for the fact I'll be away from home for six weeks which will kill me, but it's gotta be done. Will add more when the shooting match actually starts! Watch this space!