ChemoBoy Returns

Three strikes

2011-12-03T05:10:00.001Z

The most astute of you may have noticed a pattern emerging here - let me explain because, to be honest, the evidence for that is weak, but it is there.

The first part of this blog was started more than three years ago, when I was diagnosed with bowel cancer. The blog detailed my treatment for that cancer, then abruptly went silent when the treatment finished - strike one.

All was good for a couple of years then we pick up the story when I was diagnosed with bladder cancer, and the posts became more frequent, detailing my treatment for that also. Again when that treatment finished, all went silent (strike two) - until now.

The reason for the update is I have received strike three.

Actually I received it several months ago - I have just been put off writing about it, but the time has come, so here goes.

Strike three initially took the form of a sore chest - a sharp pain in the chest just to the left of by breastbone.

I happened to be at my GP for something completely different and mentioned it (to the locum GP who I was seeing that day).

She was concerned that it may be a blood clot, so arranged for me to have a scan at St Johns. I duly went for the scan and the discovered that I did not have any blood clots, but that there was a growth on one of my ribs. I was sent for a different type of scan at the new Edinburgh Royal which confirmed this diagnosis and immediately I am back into the system after just escaping it.

We were referred to the oncology department again and met Dr Law, who has now taken over my case from Dr Howard, my Oncologist from the bladder cancer. Dr Howard has retired, and I wish him a long and happy retirement.

Helen and I met Dr Law one Thursday afternoon at St Johns hospital. We took Matthew Clifton-Brown, our church leader along for moral support, because to be honest, by that time we kind of knew the worst.

So the official diagnosis was metastatic bladder cancer tumours on the bones - actually a few of them. One major one is on my (7th?) rib and was the one that had been causing the problems, but it turns out that there are also a few, much smaller growths on my pelvis. the upshot is that these growths are not treatable and I have been diagnosed as terminal - strike three.

The irony of this is that I was given this news two days after my final appointment with Dr Phillips, the original oncologist form the good old days when I 'only' had bowel cancer. After three years with no recurrence of that I have been put on a care and maintenance regime and will not see him for two years. As it stands at the moment I am not expecting to make that appointment.

There is much more to this tale, which I will continue with in future posts, but for now that is enough.

God bless
Graham

Warnings

2011-06-14T12:17:00.000+01:00

Our hero was discharged from hospital at the end of the last post, sporting a wound stretching from his (my) navel to his (my) ribs. I also have my shiny new Stoma and Urostomy.

The wound still has twenty-five or so staples left in, holding the sides of the wound together while it heals. A similar number had been removed by the ward staff before I was discharged from the hospital. I made an appointment with the practice nurse to remove the rest of the staples, but the next available appointment was on the Thursday (three days after my discharge).

Day two out of hospital and a letter arrives from my work, informing me that the period of full pay was coming to an end and I am due to start on SSP from the beginning of the next month (about 5 days time).

This means an immediate period of frantic activity, cancelling direct debits and other outgoings to reduce our overall monthly spending. Sky were funny (but helpful) and gave us a discount, as well as a credit, to enable us to keep our account open - Bannatynes, on the other hand, were extremely unhelpful and unsympathetic (boo)

Thursday came along and I went to the surgery for the nurse to remove the final staples. Everything went well. The staples came out with very little difficulty, and I spent some time discussing my situation with the GP.

I walked back home and carried on with my frantic phone calls. Helen arrived home and came up to see me and the scar now that the staples had finally been removed. She took one look at it and freaked out (I don't think that is too strong a description).

The wound had opened back up and there was a hole about two inches by one inch. I could not feel a thing, but Helen was seriously traumatised.

I ended up in the Western Infirmary again (after three hours in A & E at St Johns). I finally got to bed around 3 am, after visits from, first, one nurse then the doctor then a second nurse (this one to patch it up, finally, fortunately).

The registrar came to visit me the next morning and duly inspected the, by now, infamous wound. He pronounced it minor - a blip, in fact - and I could be discharged without further work, as long as the district nurses attended every day to dress the wound.

Our very good friend Becci Hale was also a doctor on the ward at that time and arranged for some private transport for me home. Twenty minutes later one of the nurses appeared and informed me that the transport was ready - unfortunatly, I was not. I hurriedly got dressed and was taken down to the hospital main entrance. I was taken home by a very nice volunteer driver named Pat. I arrived home at around 11 am, just over twelve hours after leaving.

This episode was a warning. I needed to take it much slower. In fact I was not able to do nearly as much as I was before the staples were removed, and the wound was much more painful. I decided that I would take the full amount of painkillers available.

The last two weeks have been a VERY gradual improvement. I have been out of the house three times (once to the GP, once to Sainsburys and once for lunch with a friend from work). I have also managed to walk round the block once, but then needed to rest for the rest of the evening.

The would is healing very slowly. The District Nurses have been coming in every day for two weeks, and have just decided that it can be reduced to every two days, as the wound is now better. It is likely however to be another three weeks before it is completely healed, and even then it will continue healing underneath for several more months.

The Stoma seems to be working fine, and still getting smaller. I have been ordering new underwear, now that am entitled to it on prescription.

I have been back to the consultant (Mr Marriappan). The bladder and lymph nodes have been analysed and there is no cancer outside the bladder. There were microspots on the surface of the bladder, making this a stage IIIa tumour which seems to have around a 75% chance of survival.

I have to say though, as a Christian, I believe that percentage chances are immaterial. My future is in God's hand. If He wants me to be cancer free then it will never recur, no matter what the odds are. On the other hand, if he wants to bring me home (to Heaven) sooner rather than later, nothing on Gods Earth, including chemotherapy, radiotherapy or surgeons can stop it - it is either a 100% or 0% chance.

God bless

Graham

Soup

2011-06-14T11:13:00.001+01:00

This post follows on directly from the last two part post, describing my recent minor surgery. Part one is here

I have a telescoped memory of the evening of Thursday 12th May. I have memories of waking in the recovery room after the operation. The Anaesthetist was busy sticking a central line into my throat. That morning I was given an epidural for pain management after the operation (not during as some people thought).

One of the problems with an epidural is that it can interfere with blood pressure. There is a fine line between effective pain relief and problems with blood pressure. I arrived in the recovery ward at around 7 pm (after eleven hours in theatre) and eventually left for the High Dependency Unit at 1 am. The Anaesthetist had been on duty since before 8 am - that was when he put the epidural line in. He finally left around 12.30 am - sixteen or so hours later.

Friday, Saturday and Sunday passed in a bit of a blur, gradually becoming clearer as time went by. I didn't get out of bed much during this period. The first time I tried, I was in my chair for about twenty minutes (while they changed the sheets) before my blood pressure went through the floor. I was shunted back into bed as soon as possible!

On Monday I was moved from the HDU to the normal ward (Ward 57). Life started to get better. The epidural was removed and my blood pressure started to return to normal. Gradually all the tubes and lines were removed. Bowel movements returned to normal and I started my lifetime relationship with my baggy.

The time in hospital was fairly straight forward - each day was easier, and I was able to do (a little) more. The highlight was walking to the end of the corridor to the patients day room to watch 'Bargain Hunt' - this was a major achievement (not Bargain Hunt, but getting there).

Eventually I was well enough to escape from the ward. Visitors would hijack a wheelchair and we would escape to the WRVS cafe on the ground floor. Again as the week progressed I tried walking back, rather than using the chair (although it was never far away).

On my second Monday in hospital (day 11 Post Op) I only had one set of tubes left - two very narrow stents coming out of the Stoma. One final test, called a Lupogram, was scheduled for that day. This checks for leakage within the stoma and kidneys. This was the final barrier to being discharged. Fortunately, there were no problems so the stents (thin wire-like tubes) were removed.

The wound looked good and was healing well, my bowel was returning to normal and the urostomy bag and stoma were performing as normal.

The nurses on the ward removed about half the staples in the scar on my stomach. I was told to make an appointment with my practice nurse to get the others removed as soon as possible.

The title of this post is inspired by hospital food. It turns out that hospital food is as bad as it is reputed to be. One of the exceptions to this is soup. The soup which is made every day is excellent. The fact that this was the only food I had for a week is, of course, nothing to do with it!

After all this, if you are still interested, you can continue reading here

Decision time - part two

2011-06-14T10:45:00.001+01:00

For the first part of this post go here...

For the discussion with the Consultant, we had been moved to a small side room in the Ward One. We were left to discuss the options and and make our decision. We prayed about this, asking God for peace about the correct way forward, but really it was a very easy decision.

When the consultant returned we told him that we wanted to go straight for the operation. My strong feeling was that we would go through four/six weeks of radiotherapy and all the recovery period and end up back in the same position, without the options. I felt an immense sense of peace over this decision. Seven months ago in November, we were faced with the same decision and I tried everything to get out of it. This time I was ready.

We were immediately sent to see the surgeon and accepted on to his list. It was likely that the operation would be about four weeks later, to allow the residual chemo to get out of my system. We went home and started the waiting period.

Nothing particularly exciting happened in this four week period. Gradually I recovered from the chemo getting ready for the operation. It would be longer because the surgeon needed to sort out the hernia which had developed in my stomach after the last operation.

The time of the operation approached. The Stoma Nurse visited me the day before I was admitted, to mark out the position of the stoma with an indelable ink pen - a large black spot on my stomach around two inches to the (my) right of my tummy button.

Brief aside to describe the actual procedure planned. The bladder is removed and a small piece fo the large bowel is also removed. This is connected to the kidneys and extruded out of the skin of the stomach - this is the Stoma. It is (currently) just over one inch in diameter and sticks out about three quarters of an inch. It does shrink in size after several months. 'Wee' continuously drips out of this and in to a bag stuck on to the skin of my stomach - a urostomy bag, my new best friend.

The next day (Wednesday 11th May) I was admitted to the Western General in preparation for this operation.

If you are still interested, thedetails of my stay in hospital are here....

Decision time - part one

2011-06-14T10:43:00.001+01:00

The last time this blog was updated our hero was last seen departing into the sunset from St Johns Hospital after spending a couple of nights recovering from a chest infection.

Since that time, many notable things have happened that I should have been blogging about, but just couldn't summon up the will to do so. That time has now come, so here goes.

Picking up the narrative where we left off, I had missed one session of chemo during the time in St Johns. That session was rearranged and carried out as normal. After that a further biopsy was arranged, overnight in the Western General with a general anaesthetic. Again this went smoothly and I came home again to await the results. I was due to have a session of chemo on the day that the Multi Disciplinary Team (MDT) met.

I was prepped for the chemo, just in case, just in case they decided to continue the chemo. Around an hour after we arrived the Consultant arrived and asked for Helen and I (she had come with me that morning). The results of the biopsy showed that the tumour had not responded and in fact they had removed more of the tumour during the biopsy.

It turns out that the response to chemo is also an indicator to the response to radiotherapy. Thus, asI had responded poorly to the chemo, it was likely that I would respond poorly to radiotherapy. We were faced with a decision. Go through the radio therapy, which can be very tiring, with the possibility/probability that is would be ineffective and we would be in the same position again in six months, or do I just go straight for the infinitely less desirable operation to remove my bladder.

part 2 follows here...

All by Myself (part 2)

2011-03-24T09:45:00.000Z

(this is part 2 of a longer post, so if you haven't read the first part go here)

I felt a bit better by morning, but I dozed until about 1 o'clock, in between blood tests, doctors rounds and more BP and temperature readings.

Normally I don't have a problem giving blood or getting injections or drips etc - it is a bit of an occupational hazard when you are on chemo - however I was getting a bit paranoid after six or seven needles in 24 hours.

The drip was being administered through a needle in my arm which had been placed by the A & E doctor the previous evening. It did seem to be OK at the time, although it Helen tells me there was blood all over the floor and the trolley by the time he had finished.

Anyway, by Tuesday morning it was beginning to hurt a bit - more than a bit in fact. It felt like someone was hammering a screwdriver (Phillips, not flat headed though) into the bones of my wrist every 10 seconds or so. I mentioned it to one of the nurses assigned to me (isolation, again) and after a suitably long period of time I was given some paracetamol for the pain. Surprisingly it did actually work.

Later that morning another doctor came and took the original one out and put in a new one in the other arm. This one was actually much better and didn't hurt at all (I can still feel the original one in my arm occasionally).

Tuesday afternoon saw Helen and Becky visit me, brining home made scones with jam and cream. they were delicious, but I don't think I did justice to them, since my sense of taste was still poor. After dozing for so much of the morning, I felt reasonably bright by this time, and my sparkling wit and conversation seemed to cheer them up. Apparently I looked a bit like a scarecrow, so as they left I was 'encouraged' by my wife and daughter to have a shower. After this I went back to bed and slept until tea time and evening visiting.

During this time my temperature spiked again and after the (reasonably) lucid time during the afternoon, I was more than a bit dopey again during the evening. Helen came back again, brining Katie with her this time

Katie is unable to sit still for longer that ten minutes so we sent her off to the shop to get herself some chocolate. She came back telling us that she had got lost in the sub basement before finding her way back again (via the shop of course). She said it seemed creepy - a bit like a scene from Doctor Who. After that it didn't seem appropriate to tell her that the morgue was down there.....

That night I slept better, although I was still up and down most of the night. At some point the drip finished and the one fo the night staff must have disconnected me form the drip. This made sleeping much easier, not to mention the trips to the toilet (without the drip on its wonky stand).

Morning rounds brought the doctor who decided that my temperature had fallen and my blood count risen enough such that staying in hospital was worse for me (due to the risk of infection) than going home. My parents were due to visit me that afternoon, so I phoned them and asked if they would be willing to take me home, rather than sit around the hospital. that was about 10.30 or 11.00

They arrived at about 2-ish and bumped in to Dan Hudson, our church leader, who had snuck in outside normal visiting hours. Dan left shortly after this and we sat down to wait. We kept asking what the holdup was, but no one was willing to commit. Around 3.30 one of the pharmacists arrived to check that I knew about paracetamol reducing temperatures. Since I had been told evety time I had been given one for the last two days I managed to re-assure her. When we checked with her, she said it would be before 5.30 - another two hours.

We ended up switching on the tv and watching some aytime quiz to pass the time. Andy Brough also turned up during the afternoon - it was good to see him too.

Sure enough, just around 5.15 the nurse assigned to me came into start the discharge process. We actually walked out the door of the hospital at about 5.40. As much as I admire the NHS and appreciate the care that the nurses and doctors give, waiting for 7 hours to be allowed home was more than a bit frustrating....

It has taken me a full week to recover from this adventure - I am just about back to normal now. I did walk to the GP surgery at the end of the road and that took me all afternoon to recover from.

The day I was released was supposed to be my last treatment day at Ward 1. There was a flurried exchange of phone calls between Ward 1 and St Johns, trying to ascertain whether or not I would be in that day (the answer was No). It has now been decided that rather than try to rescedule this treatment it should just be missed out. I am due to have a biopsy next week and fitting in the treatment and the weeks recovery was too much.

I am due at the Western for a biopsy next Tuesday - another night in hospital - so this is the next big event.

I think that is all for now,

god bless

Graham

All by Myself (part 1)

2011-03-24T09:42:00.003Z

This is a fairly eventful post - life in the Love household has been fairly dramatic over the last week or so.

Last Monday I was due at St Johns for a routine CT Scan - although I wasn't sure which of the consultants had ordered it - turns out it was Bladder specialist Dr Howard.

I have had a cough all week, I noticed it last Wednesday when I was in Ward 1 for treatment. I did mention it in passing, but no one was bothered by it. I didn't seem particularly unwell, so life carried on as usual.

After driving around the car park at St Johns for 20 minutes, stalking people as they walk back to their car, I got to the X-ray Department. When I arrived at the waiting area I found that all four seats were taken. I stood waiting, trying to look pathetic so that one of the sitting relatives would feel sorry for me and give me their seat. Eventually, a passing nurse took pity on me and told me I could wait in the general waiting area and they would come and get me when it was my turn.

By this time I genuinely was beginning to feel tired and a little rough, so I took her up on her offer and went to sit beside the expectant mums waiting for their ultrasound scans.

Sure enough, after a while, I was called back and taken in to a side room. The temperature in the room was warm. The radiologist talked me through the procedure and asked me for an arm, as they need to inject some contrast dye to show up on they scan better. First time round she could not find a vein so she tried the other arm. I was feeling more than a bit rough by this time, so she left me with a cup of cold water and went off to see what was holding things up.

Next thing I remember was water all over my trousers (no not that!), cup on the floor and feeling very cold and clammy. The radiologist came back into the room. I obviously looked like death warmed up because she immediately got a nurse to lie me on a trolley with my feet in the air. They were taking my temperature and blood pressure every two minutes. I think at this time my temperature was high and BP through the floor.

After half an hour or so I had recovered enough for them to take the scan and then I headed back home and went to bed.

I woke up mid afternoon feeling better. I went downstairs and watched some telly until the kids got home about 4.30. I went back to bed and slept for an hour or so. When I awoke I felt as if I was on fire. I dragged myself to the desk beside the bed and managed to find my thermometer.

When I took my temperature it was 37.7 - the amber threshold is 37.5 (two consecutive temperature readings is a red and means a visit to the hospital) so I began to get worried, although to be honest I wasn't really thinking straight.

Helen was due in from work so I waited for her. I dozed again until I heard the car on the drive. I found the thermometer again and too my temperature again. 38.2 this time. This was above the Red threshold (38.0 - Red alert - immediate call to the hospital, day or night).

Helen immediately called the on-call Oncologist who decided that I should go to St Johns where they would arrange for me to be admitted. Helen and the kids ran around collecting things for my stay in hospital while I sat, thick headed, feeling like an idiot.

We got to A & E where they knew nothing about us, so we sat in the general waiting area, with all the sick people. After about 15 minutes we were taken in to a side room where they went through some stuff with us. Again we waited, before they finally took us through to one of the treatment rooms.

This room was stiflingly hot (bearing in mind I had a raging fever at this point) and eventually Helen persuaded them to bring a fan in to cool the temperature down a bit. I think I was a bit delirious for some of the time, but when the fan was brought in I started to feel better almost immediately.

Blood was taken for analysis, along with continual blood pressure, temperature readings (temperature high and BP through the roof this time) and a chest x-ray. All this led them to decide that I had an infection in my lower respiratory tract.

It was decided that I should not be exposed to anyone else, as my immune system was reduced and my blood count was extremely low, so I was shunted off to a side room on one of the admission wards - my home for the next two days.

Again this room was hot, although this one had the advantage of a window, albeit one that could only open three inches. Another fan was brought out and started to cool the room down. I was plugged into a drip to hydrate me and then some industrial strength antibiotics were added to the mix. I am not sure which ones, although I believe they were specialised ones as my blood count was so low (below 3.0 is too ill for chemo - mine got down as low as 0.35, I believe).

If you are really interested, part 2 is here.

The Golden Years

2011-03-09T14:38:00.001Z

So the time has come for me to retire gracefully from public life. I have finally taken a bold step and have stopped working. I now have four weeks sick leave, which will probably be extended after that time has finished. I now have to find thinks to fill the void which stretches before me.

I think it was right to keep on working, particularly at the start, but equally so, I think that the time has come for me to finish working (certainly for the time being), hence I officially stopped work last Friday.

I have now had two days sick leave, which seems bizarre since for those days I felt as well as I have for a while. Those two days were right at the end of cycle 2, at the end of the week off. This means that most of the worst symptoms and side effects are minimised and I felt OK (I am actually writing this in the hospital on the first day of cycle 3).

On Monday I spent my day on Facebook, before spending a few hours playing Civilisation V (a relatively new game I have).

Yesterday I spend about an hour and a half on a video call to work - even after stopping work, I can't seem to get away! After that I cleaned out the garage, went to the rubbish tip and then collapsed after doing too much. As it was Shrove Tuesday, pancakes were duly made, which did revive me and then we spent the evening chatting with a friend who was visiting from Newcastle.

Tomorrow I am taking the car to the garage for its MOT and on Friday all the kids are home again at lunchtime (no school in Scotland on a Friday afternoon). so for a week of doing nothing, I seem to have managed a fair amount - well relatively speaking anyway ;-)

I think I might give up drugs for Lent - on the other hand maybe since I have given up work, that will count.....

I received a few comments after the last post, commenting that it seemed more down-beat and not too cheerful. That was not deliberate and I think that I have been fairly up-beat for most of the treatment. I was however, writing that post at 5 in the morning. I don't think that many people would be at their most cheerful at that time of the day.

In general I find the process of writing a blog entry cathartic. In some ways it is a cleansing experience, writing details that I would not necessarily be comfortable talking about (and lets face it, people would necessarily be comfortable hearing about in person).

One thing occurred to me as I went through the process of being signed off. I have probably been at a disadvantage because I still have my hair! I think that people underestimated how much of an effect that the chemo has, because I still have my hair - and look relatively normal. I may have put on some weight, but in the grand scheme of things I still look relatively normal. On the other hand, if I had lost my hair, I think that people would not have been surprised when I went off sick and would probably have been urging me to do it sooner rather than later.

I am sure that I have said it before, but this is much harder than the previous chemo that I had a couple of years ago. I don't know if this is because I have a harsher drugs regime or because my tolerance is lower second time around. I suspect that it is a combination of all of the above.

One new side effect this time is that over the last two weeks I have come out in acne. i feel like a 15 year-old again, with new spots erupting on my face every day - it does make me feel for them. of course mine will disappear when I stop the drugs while there will carry on for another three or four years, but still.....

I think that is all I have to say at the moment, so rather than bore you any more I will finish on a high.

god bless

Graham
(edited to korrect all the speling mistakes)

In the Dark of the Night

2011-02-19T06:05:00.000Z

One of the worst times of day, I find, is when you lie in bed, wide awake in the dark of the night - not the snugly time just after you switch out the light to go to sleep - but the time around 4.00 to 5.00 when you have woken up again and can't get back to sleep.

Your thoughts run away with you - no matter what you start thinking about they rush around in a spiral and end up in exactly the place you don't want them to go. I am writing this at 5.03 on Saturday morning, because I stopped for a toilet break (i.e. I woke up and couldn't get back to sleep) around an hour ago.

I lay in bed for half an hour and then got up with my head spinning, reaching that horrible place, full of dark thoughts - obviously, in my case, I was thinking of the humiliating defeat last week by Wales at Murrayfield (fortunately my main rugby companion has been on school holiday duty this week and I was spared the whole 'that was a dreadful match' conversation, particularly since he is English).

It was my birthday this week - in fact it was my birthday on Wednesday - they day I was at hospital for my treatment. I went to my GP on Tuesday for my regular blood test, then waited with baited breath to see if my blood count had raised from the week before. The call came through on Tuesday afternoon. The blood levels were back up and everything was good to go.

I turned up at the hospital and was plugged in. Every time the drip is changed, they check my name and date of birth - just in case I have forgotten it, I think (or maybe it is to check that no one has sneaked in, hit me over the head and swapped places with me to take my treatment. Hmmm. Must ask about that on Wednesday).

It didn't take long for all concerned to notice the similarity in dates and very sweetly, I was given a box of chocolates (probably from the stash of goodies received from other grateful patients, but I appreciated it none the less). After helping my self to oneof the orange truffles, I passed the box round the treatment area where I was. A little later I was helped with my chocolates by Clairee, The NinjaGeek when she gave up her own birthday afternoon (she was nineteen and I was forty four if anyone wants to know) to visit her poor old dad in hospital, again it was very much appreciated (so thank you Claire).

One of the differences between the Western and St Johns is that the latter is a much smaller unit they have space for around 5 or 7 patients at any one time. They have the same cancer types regularly, every week - Tuesday was bowel cancer day. That meant that when I went along every third Tuesday I would seem the same people every time. There were always people starting or finishing, and there were inevitable delays, but in general the people stayed the same. Also because everyone was being treated for the same thing, with roughly the same everyone knew how it felt and it was going.

On Ward 1 however, this is not the case. The ward itself is much larger and treats a much larger number of patients - roughly around 30 to 35 patients at any one time I would say. and everyone has a different type of cancer, and hence a different type of treatment. I am there all day and see people coming and going all the time. I have now picked a spot, strategically next to the toilet, where I can sit and watch everyone coming and going.

I have one other blog that I follow, from a friend in the south of England, writing from the point of view of a husband watching and helping his wife go through her treatment. Andy and Janine have an inspiring faith and Janine seems to face up to her treatment with unwavering faith in God and a strong sense of humour (possibly slightly dark at times, but well...)

I know that there are time when that faith in God will be shaken and the sense of humour slips (see the start of this post :) but I think I would like to say that both Andy and Janine have been a great inspiration to me.

(I also feel inadequate in the blog posting department, when every other day there is a new email in my mailbox anouncing a new post from Andy).

I do believe that God has me in the palm of his hand at all times - even the dark of the night, but I don't think that this comes across in this blog. To a certain extent this is a deliberate choice - I have chosen to concentrate on symptoms and treatments and miss out the reliance on God.
I know that God can heal supernaturally and sometimes chooses to do so, but I also know that he uses people he has put on the earth, such as the medical and nursing staff (both Christian and non-Christian alike) who look after me, to fulfil his sovereign plans.

Enough of this night-time drivel - this has taken nearly an hour to write and it is almost time for breakfast telly to start.

God Bless

Graham

Sent Home in Disgrace

2011-02-09T22:30:00.000Z

Part 1 - A Free Week
It is just over a week since I had my last round of chemo and it has pretty much taken me the whole week to recover form that bout. I was far more tired than I remember from the equivalent chemo cycles in 2008.

I don't know if I am romanticising the last round, or whether it actually is harder this time - probably some of each.

Again, the actual day in the hospital went smoothly, other than a very embarrassing need to go to the toilet every hour. I can't contain it at the best of times, but the main function of many of the drip solutions is to (re)hydrate me. The end result is that the liquids pour out of me almost as fast as they are pumped in to me. Glasses of water and cups of tea just make it all worse, but I have to say that being pampered like that is rather nice, and as for the foot massage (I know I have mentioned it before, but, you know.........)

The aftermath again proceeded much as advertised. The next day (last Thursday) was relatively straight forward, not too sick, but easily tired. Friday more sickly and more tired. Saturday, more more sickly and more more tired.

The other side effects were also present - particularly the constipation. Fortunately the lovely nurses gave me some nice medicine to make it go away. It took time, but eventually relief was on hand.

The week off fairly flew past - going to work every day is such a delight. The only problem is that it seems that I overdid it a bit.

Part 2 - Sent Home in Disgrace

Each visit to the chemo ward is preceded by a blood test. Yesterday I duly went to my GP for my blood test. The blood test checks a number of exciting things, one of which is my White Blood Count (which is a measure of how good my immune system is). The WBC count should be 3 or more. Before the start of the treatment it was 7.2. before the second treatment it was 3.2.

Yesterday, even after two weeks without any treatment, it was measured below the Magic 3 - (2.6, I think), so when the ward called me for the regular day-before check-up they warned my that I may not receive the treatment today. I arrived for my appointment today and was taken in to the ward and stuck with my needle.

The nurses took another blood sample to repeat the tests. The sample was whisked of to be tested again and in the mean time I was given the first drip - a saline solution for hydration. just as that finished, the news came through and my WBC count seems to have dropped further - although I don't know what the actual value was. Maybe, just maybe I should try to take it a bit easier.

As a result I was sent home in disgrace, my head in my hand; shame filled my every pore. I have an extra week off and everything slips by a week.

I have to admit, I just went home and bummed around for the rest of the day - I decided that if I was too ill for chemo, then I probably deserved a day off work - maybe that was wrong, but there you go.

I still get to go back on my birthday - no more news on the campaign for a second birthday - the kids are behind it (they think they will get more birthday cake) but Helen doesn't see the need. I will press on with this though. If you want to add your support to this worthy cause, please contact me. I may have to start a petition on the Number 10 website - I am sure that David Cameron would be very interested in this.

Enough already - my daughter wants to see what drivel I have written this time, so I will finish here. I am not expecting much in the way of symptoms this week, what with the lack of nasty chemicals and stuff, so there may be another longer gap - unless blinding inspiration strikes.

best wishes

Graham

P.S. congratulations to Becky, who has just been awarded a scholarship to study in the US next year. :)

This time it’s personal

2011-01-23T21:19:00.001Z

So I am around half way through the first week of the first cycle of three (or possibly four) of chemo, with the possibility of radio therapy to follow – if you say it quickly, it doesn't sound so bad….

I have had a look back over the most recent set of posts and realised that I haven’t mentioned the drugs I am privileged enough to be receiving (I mean that, all you Americans – the NHS is great).

I am receiving a GemCis combination – Gemcitabine and Cisplatin. For those of you with long memories, (or the facility to scroll down the page) you will notice the similarity of drugs to last time – Capecitabine and Oxaliplatin, and with that similarity in names you will see a similarity in symptoms and side effects.

Both of these are administered as a drip. This means that I have a single day treatment at the Edinburgh Cancer Centre at the Western General. It is an all-day stint, starting in the morning. It starts with a bag of saline solution (1 hour) followed by some steroids. This is closely followed by the first of the Chemo drugs – Gemcitabine. by this time i have had three cups of tea and am ready to go to the toilet – which I am doing more frequently anyway – so I end up taking my pump and drugs for a walk to the toilet with me.

After this I have another saline (or glucose – can’t remember) drip, which takes 2 hours. I have no idea why that one takes so long. After that there is the second chemo drug – Cisplatin. The two chemo drugs take about 15 minutes each and there is about 5 hours of saline/glucose/flushing going on around about them – but someone brings you tea and biscuits so it isn’t all bad.

I have the same anti-sickness drugs and (more) steroids as last time, for three days, to take the edge off the chemo.

Now, of course, I remember that the steroids do really strange things to my sleeping – wide away at 4 am on Thursday morning, and when I do get to sleep, the dreams can be weird and wonderful – maybe just weird though. After that the drugs do kind of take control and it isn’t so bad, although I don’t remember being so tired last time so quickly.

I finished the first round of chemo/steroids/anti-sickness yesterday – and yesterday evening was not much fun. Neither was today at church. The meeting hall was very warm and I kept getting worried glances from Katie (on my left) and Helen (on my right) about the colour I was going – they were obviously worried about my catching an infection, so I can’t complain too much though.

My sense of taste has also been affected. I constantly have a yeuck taste in my mouth and can only taste stronger food – I had fruit salad for breakfast and could only taste the pineapple, although apparently grapefruit also tastes normal. Orange juice on the other hand is just foul. Surprisingly, my sense of smell has been unaffected, Anyone who drives through or lives close to the west end of Edinburgh will not forget the malt smell from the brewery – that was just as fragrant as ever today.

So it is a waiting game again until Wednesday, when I get to go through it all again. I will see how I get on tomorrow at work (yes I am still trying to work, at least part time anyway).

I have just realised that I get to have chemo on my birthday this year (16th of February, if you want to send a presie) – maybe if I play my cards right I will get a second birthday, like the Queen or Paddington, later on in the year – maybe in April, since no-one else in the family has a birthday that month.

Enough – off to watch the telly now.

Gob bless

Graham

p.s. oh yes, I have been constipated too (sorry, just had to throw that in)

p.p.s Happy 18th birthday to Sean

Just a quickie

2011-01-23T20:10:00.001Z

I found this in the BBC news website, about the build up of computing facilities for the 2012 Olympics – thats even more computers than the Love household!

Virtual London 2012 Olympics off starting block

The big day

2011-01-19T13:34:00.000Z

Time passes and eventually we get to where we are going - and this is where I have been heading recently. Today I have arrived at Ward 1 of the Western General for my new chemo treatment.

Yesterday I was at a different part of the hospital - Nuclear Medicine - for a kidney function test. As tests go, it was pretty boring. I arrived (half an hour late, because of the traffic) and had a canula put in. Then I was injected with radioactive Technetium (despite what I said on facebook, it was Technetium). After that I was told to go away and come back in an hour. I was left to wander the wards of the hospital and do anything I wanted, so long as I returned after the required time.

Sure enough, I turned up after an hour. They took a siringe-full of blood and sent me away for another hour. This was repeated twice more before I was sent home. My pee was luminous for twenty four hours (only joking) and that was it - pretty boring really

Today I have returned, this time to the Chemo ward. I was inducted, given my bracelet and enough paperwork to destroy a small woodland copse. They contain all sorts of dire warnings about side effects - more of which in future posts, I am sure.

With the wonder of modern technology, I am connected to the internet, typing this as I am drip-fed (quick glance to check the spelling) Gemcitabine.

My alarm has just gone off, so it must be time for a new drug - Cisplatin, I think. So far, so good though.

They have introduced a new service here in Ward 1- I have just had a foot massage, as I sit here - very relaxing indeed.

The morning in here seemed to be fairly quiet, although I heard other patients and staff say it was very quiet. The afternoon has picked up. this morning there was one other patient, but there are four of us here now and this is one area of one treatment site (there are four here).

I have another few hours to go, so I think I will stop just now, so that I can save some stuff for next time.

Starting over again

2011-01-09T22:23:00.000Z

The more eagle-eyed readers will undoubtable noticed that the name of this blog has changed. I have been feeling inadequate in the name department after reading the blog of my friend - see below.

ChemoBoy is my alter-ego, and I have the teeshirt to prove it. I might get one of the children to take a photo of me in my superhero outfit.

Now that we have the important stuff out of the way, an update. We had our appointment with the Oncologist on 30th December (and a holiday at Centre Parcs, too, which is the reason for the delay). The result of this is that I have an appointment to start my Chemo on 19th of January.

Again however, we were back to square one with the choices. After everything seemed to be cut and dried, we were given the same choices as before.

There are two definitive treatments for Bladder cancer, according to the Oncologist. They are Radiotherapy and Cistectomy (surgical removal of the bladder). Chemotherapy can be given before either of these options to improve the outcome at the other end.

After a discussion of the options I have chosen to go for the Chemo, hence the appointment next week.

The treatment this time consists of three cycles, and this time it will take place at Ward One at the Western General in Edinburgh. I am sure that Ward One will be familiar to most cancer sufferers in this part of the world, however I managed to avoid it last time, so this will be a new experience for me.

Treatment will take place once a week (a Wednesday) on Week One and Two, with Week Three off. There will be three cycles (of three weeks each) followed by a biopsy and a possible fourth cycle if the tumour is responding. This will be followed by Radiotherapy.

If the tumour is not responding after the biopsy then the prefered option of the surgeons will be to remove the entire bladder.

I am very anxious to avoid this option, if at all possible.

I have been in contact with a friend from my previous life, Janine. She has just been diagnosed with her second cancer - a lump in her neck. First time round she had to have her leg amputated, so I guess she knows what we are going through with the whole bladder removal thing. She had here five year all clear just before discovering this lump. Click here to follow her husbands blog - Musings and Leanings.

I will post again as the chemo progresses.

On a happier note, I am sitting with my favourite Katie, watching The Two Towers and eating Cadbery Clusters :)

How could life be better?

A blast from the past

2010-11-18T17:49:00.003Z

Wow, what's this - I thought he was dead or something.

Well no actually I have been living quietly, recovering from Chemo and going to work and getting on with life, content in the knowlege that I was a surviver and had beaten the Cancer.

Very good, you say. So why are you writing this then?

Well...........

It's back.

Except it is not the same - and therein lies a tale, which will no doubt follow in future posts, but essentially I have bladder cancer. After a (new) series of tests, biopsies and consultants I have completely unrelated primary bladder cancer.

As I write this I am waiting for an initial appointment with the Oncology department to discuss chemo for this new bladder cancer.

I will post soon relating the gory details for those of you that are interested, but for now this should be enough to whet your appitite.

God bless

Graham

Endings and Beginnings

2009-03-23T19:57:00.001Z

The more observant among you will have noticed that it is now march, spring is springing, birds are singing and the sun pokes its head out now and again. You may also have noticed that it it almost two months since I last posted. I just never seem to have the time now – there is always something else happening – normally work or sleep!

So what has happened in the last two months? Well there is a new American President, the worlds banks are slipping evermore into disaster, I have had another birthday and finished my chemotherapy.

I know, I know. I was planning to do a daily post for the last two weeks of the chemo, but after the last session I just started to get on with life, and soon the time just slipped away – you wouldn’t have wanted to hear me going on about it all anyway, but I suppose a bit of news might have been nice.

I would like to thank all the people that have been asking after me when I was too lazy to post – you know who you are :-)

The last post I made was fairly brief, in fact you might say that it was downright rude in its brevity. At that time I was into my last few days of treatment and I could barely stay awake to write.

Looking bake it has all slipped away so fast, and yet the effects are with me all the time, even now.

So some details then, I finished taking the drugs on 27th January and on the same day had an appointment with my consultant, Dr Phillips – coincidence that it was the same day though. I was due to have a colonoscopy on the 29th at SJH. When I saw Dr Phillips, he postponed the colonoscopy as it was too soon after the end of the chemo.

The appointment was rescheduled and the next day I was also sent an appointment for a CT scan, the day after the re-scheduled colonoscopy.

(time passed)

I had my colonoscopy last week, Monday 9th to be exact. I had the CT scan on 10th and finally met with Dr Phillips again on 17th.

The upshot of all of this was that he has said that everything looks normal. During the colonoscopy a few biopsy’s were taken and I am still waiting for the results of them, but the colonoscopist(?) was happy that everything was normal and was just being safe – I did get slightly worried about that, but that has kind of gone as the days have passed I will not get those results for another week or two.

As I said, the next day I had a CT scan. The results of that are that a few of the lymph nodes are slightly enlarged, but are unchanged since my first ct scan last June, the day after my operation. Since they are unchanged Dr Phillips is not worried about them.

I have been released until September, when I will have another CT scan and another consultants appointment.

So, that is the timeline and the outline of what has happened. In some ways, stopping the chemo has been a bit of a damp squib – it was just another day. I took photos of my last dose of drugs (planning to post them here) and then went to work. It has all passed way without anything to mark its passing. On the other hand I suppose that it is good that it has just gone away – it has been such a part of life for the last six months it seems odd not to have to remember to take the tablets. I still expect to have to take them now and again and then remember that I don’t have to.

I still have some of the symptoms – in fact the symptoms are worse now than they have been all the six months that I was taking the tablets.

The main effects now are that my hands and to a lesser extent feet are sore all the time – any time i move them in fact. I can’t do buttons or other fiddly things and my hands have swollen so that I can’t wear my wedding ring – although that may just be because I have put on weight! it is very wearing to have sore hands all the time – I guess that arthritis sufferers have this all the time too, bit this is a different type of pain from that.

I cannot feel properly with my hands - and when I use my hands i have pain in them – I can feel it just now as I type. My writing is terrible because I can’t hold a pen properly and i just try to not use my hands if possible (which is not very realistic as it turns out). I seem to be more clumsy in general, occasionally staggering and dropping things that I wouldn’t have done before. I guess that these are symptoms of nerve damage (I think they are similar to the symptoms that my sister had when she was diagnosed with freidrics ataxia, although the cause of mine is quite different from hers).

I try to keep quiet about the pain – it is there all the time, but people (including me) get bored with continuous complaints about the same thing. I just try to get on with life as best I can. In the end, if I come out of this with slightly painful hands, I think I have probably won.

I have put on weight (hmmm, I’ve heard that before) since I finished. I have noticed that my clothes are a bit tight around the middle now. I have made several promises to myself (and broken then already) to stop eating so much and to get out walking/running/cycling more now that the days are getting longer.

(another much shorter break)

I wrote the last part one night when I could not sleep. I have just read it again and I actually think it makes a reasonable amount of sense.

Each day is different. My hands are still affected by the cold. I feel the pain every day, but some days are worse than others – mainly when the weather is old or damp (or both). I am hoping that are the weather gets warmer (!?!) the effects will get less.

Having said that, I know I have said it to some people before, but if I come out of this with sore hands, I think I will probably have won.

tired

2009-01-18T22:30:00.000Z

tired

10 days

2009-01-17T11:00:00.003Z

Another quick post - a quiet day yesterday, did nothing, but still exhausted. I did kinda lie around all day. Most of the kids disappeared to friends or shopping in the town, so that was just as well really.

Helen was out with friends yesterday evening, so I was fighting to stay awake at the end of the day. She was down in Berwick-upon-Tweed and didn't get back until around 1.30 in the morning - dirty stop-out. It all means that I woke up as tired as I went to sleep.

Probably go for a sleep later this afternoon, but I prefer not to do that, because I am afraid that I won't get to sleep tonight.

more soon

Graham

Friday - 11 days to go

2009-01-16T08:55:00.004Z

(but I am not counting - honest)!!!

After being awake all night Tue - Wed, the last two nights have been fairly settled, albeit I have been worried that I would not get to sleep. In the end though I managed to get two full nights sleep. I am still waking up in the morning almost as tired as I have been going to bed, but there you go.

I have taken this week off work and I am glad that I have done so. I am not sure how I would be getting through the day. I suppose that it is not so much the during the day bit, but rather how I would feel in the evening and also by this time at the end of the week. I don't know how much I have in the way of energy reserves.

I have one more dose of the steroid to go - sometime this afternoon, For the fist four cycles I was taking it at the same time as the evening chemo dose and I that, I am not sure, was one of the main cause of my sleeplessness at night. When I saw the consultant at the half way point, he suggested that I took the steroid during the day - not quite so convenient, from a remembering point of view, but certainly better that being awake at 4 am. In general, when I have managed to do so, it has made a difference as you can see from above.

I am not looking forward to this weekend, as I come off the steroid. I think there are withdrawal symptoms from this. I am generally very tired for the weekend and into the Monday and it has really been the Tuesday of the next week before I start to feel a bit more human again, but this is the last time (just keep repeating it to yourself, Graham).

that is enough for now,
back soon

God bless

Graham

Windows 7 beta

2009-01-14T22:19:00.005Z

I have been testing the latest version of Windows recently - Windows 7, which has been released as a beta (test version), available form the Microsoft website here. It should be available for download for another week or two. I have in installed on a laptop and a desktop at the moment and have found it to be mainly stable. I have had one or two problems, mainly to do with drivers for older legacy components.

Other than that, I have found that I like the new interface. It is not ready to test as an upgrade to a working system, but if you are fortunate enough to have an older machine lying around gathering dust then it may be worth having a go with it.

It seems to be reasonably stable, and in line with Microsoft claims, does not seem to use as may resources and Vista. Perhaps this is actually vista as it should have been, as some commentators have been saying.

The laptop has a core duo (not a core 2 duo - this was before they were released) and 2GB ram. The desktop has a P4 processor, although it again has 2GB ram. As with vista the more ram that you can add the better. I think the recommended minimum for Windows 7 is 1GB and a 1GHz processor (so some PIII processors may just scrape in there, but I don't know that I would want to run Windows 7 with a PIII).

A would suggest that a more reasonable minimum would be a P4 processor (preferably a dual core P4D) or above and 2GB ram - about the same spec as my test desktop, which is quite happily streaming music from the laptop and playing it (it is using 14% processor and 36% memory).

If you do decide to take the plunge, leave some feedback.

happy testing

Graham

13 days to go

2009-01-14T21:59:00.003Z

I have thirteen days of treatment left, assuming I don't miss a day by accident - which sometimes happens at the weekends when our normal routine goes to pot. I have started taking the capecitabene and the steroid drugs- and was awake until 4.30 this morning :-(

We went to see the genetics councillor today, at SHJ - and found out that her son is in Claires' music class - small world.

The main thing to come out of today is that the kids have a slightly increased risk of this, but because there is no family history apart from me, there is not a major problem. They will be offered a colonoscopy in the future - probably in their mid-thirty's so there is no rush.

I am going to get them to check my blood for a particular marker which may indicate something hereditary, but even then the kids won't need to be tested for another ten or fifteen years. I suppose that my brother and sister may be interested, so I will get them the information when it comes to me.

I have started to get the main symptoms now. I have the tingling in my hands and feet when I come into contact with anything cold, like the laminate flooring! obviously I have had problems with sleeping (caused by the steroids). I am hoping that taking the second dose in the middle of the day will mean that I don't spend the entire night awake again. I don't think I have been overly grumpy this time, but is is early days yet - that could arrive any time until the beginning of next week along with the tunnel vision and other side affects.

well, that is enough just now. I will update again tomorrow.

god bless
Graham

The Home Straight

2009-01-13T13:46:00.005Z

I meant to post this earlier this morning, but ran out of time....

I have been at St John's (SJH) today for the start of my final treatment. Hooray! It doesn't seem like six months since it all started - it seems to have flown by. I hope to post a quick post every day for the next couple of weeks (but don't hold your breath if I don't manage every day).

I guess that I have been looking forward to today for a while (approximately six months in fact!), but as I say it seems to have come round very fast. I suppose that it helps having the time broken up into the convenient three week blocks made the time disappear.

So today was a normal morning at the chemo unit. I was due at 10.00 and left the house just after 9.30, having taken my pre-chemo anti-sickness drugs. These are the ones that disrupt all my normal bodily functions (like sleeping at night and other boring stuff like that!). I got to the hospital and fought for a parking space. It was worse today than it has been - although there was a bonus because the parking charge has been withdrawn as from the end of last year. I did see lots of men in fluorescent jackets checking cars - people seem to just park anywhere and the car park is too small, so they were sticking things on cars on the end of the rows. I don't know if it was a polite reminder or a parking charge (probably the later in fact). Anyway I got lucky (or maybe someone was watching out for me) - I saw someone getting into their car so i just hovered around waiting for them to leave.

10.00 is the first appointment of the day, so I got my favourite seat in the treatment room, and was the first patient hooked up. There are very nice volunteers that bring cups of tea or coffee, so I was set for the morning.

The treatment went as planed and I finished just before 1.00. Normally during the morning, one of the nurses comes round and books the next appointment for three weeks time. It felt good telling them this time that I didn't need to book one.

Having said that, once you are in the system they don't let go (I have an appointment tomorrow with the geneticist to discuss the possibility that my cancer is hereditary. This has implications for my brother and sister (and my parents too I suppose) as well as all my children. I will blog about that tomorrow. Also as I walked out the door, I was handed an appointment to see the oncologist in a couple of weeks time. I will blog about that when I get round to it - this one is 'just to get me into the clinic system'. Like I say, once you are in the system, you can't escape.

To be honest that is unfair. Now that I have been diagnosed I am glad that they are going to keep tabs on me, and I am glad that I don't have to worry about the cost at all. I am so thankful that we have the NHS. If we had been in the US, I would probably had to have sold one of the cars to pay for the treatment. Those NI contributions and income tax don't seems to have been as much of a waste now. I always knew that, but it brings it home.

I can't remember if I have talked about it before, but just as I was starting the treatment and I knew what drugs I would receive, I googled them and worked out how much it would cost. I have two main drugs (I am only talking about the chemo drugs here, not the anti-sickness ones that I get at the same time), and I worked out that the cost of the treatment over the six months would be between 1200 and 14000 (depending on the dose that I received). As I say, thank goodness for the NHS.

That is enough for just now - I may write a sentence or two later, depending on how I feel and I will try to post an update tomorrow.

thank you and God bless

Graham

Jingle bells

2008-12-19T09:49:00.002Z

It is almost Christmas – and that means that I am just finishing cycle six. It is funny how your point of view changes with circumstances. Most people are furiously wrapping presents, decorating the house (or office), planning (or recovering from) the office night out or any other of the million things that need to be done at this time of year. I am doing the same sort of things, but all of it is overshadowed and underpinned (a bit of overkill there J) by the fact that in June this year, I didn't know if I was going to be here at all.

As it is I am doing just about as well as I could be. It does change your point of view though – I guess there are some people out there who can identify with this, but it is an odd feeling. This is the traditional time of year both for reflection and forward looking. The last six months has been interesting, strange, unsettling, frightening, tiring and probably lots of other 'ings' that I can't think of at the moment, but looking back at the moment the main impression is 'normal' – and that sounds strange.

This has been a conscious decision though. Just after I came out of hospital, before the chemo started, I was just starting back at work. I came home from work one day to take a phone call from my GP. He had just heard through the grapevine that I had started back at work and he was concerned about me. At that time I had just recovered (or was still recovering) from major surgery and been diagnosed with cancer. This was the point where they were still trying to decide whether it was Stage 4 cancer, with a 5% chance of survival and spreading to my lymph system and liver or Stage 2 which had been totally removed, with an 80% chance of it never returning (it turns out it is the second).

Anyway, the conversation went sort of like this:

GP: I hear that you have started back at work

Me: (cautiously) yes.

GP: Why have you decided to g back to work then? Most people would just take the six months off – and I will happily sign a sick note for you.

Me: Hmmmmm, tempting!

GP: Do you want me to do it then?

Me: No. I want to go back to work.

GP: Why?

Me: Well, there are two main reasons (actually there were three - the reason I didn't give him was that I was starting to get bored watching daytime TV, but that was never going to wash). First, My Company have been very good to me. They have not questioned me and have said that I can do what I want (not quite their words, but that is what they meant). I know that there will be times later (in the chemo) that I will not be quite so willing or able to work, so I don't want to take advantage of them.

GP: Rubbish

Me: Well, the other reason is that I want to make life as normal as possible. My family have just had a big shock and we need to get life back to normal. They are going to return to school soon (it was the beginning of August at this time), and Helen is going to start her new job. When they are all getting up and dressed to go to work/school I don't want to be lying around feeling sorry for myself, I want them to see me getting up and putting on my suit and going to work too. It will give me something to aim for too.

GP: OK. That reason is one that I will accept – in fact I think you are probably right.

So I have been working most days (well mornings). Obviously I have not worked when I have had a chemo day (a day in the hospital on the drip) and there have been days when I have not been able to get out of bed – but not as many as you might think. In fact, being in IT there is a lot of stuff that I can do remotely, and indeed there is some stuff that has to be done out of hours (rebooting servers is not normally done during the working day) so I end up logging on remotely to get this sort of stuff done (you people who just expect email to work don't know what goes on in the background).

Looking forward, life is still tainted by this, and it always will. I read a book by Lance Armstrong, who won the Tour de France winner seven times in a row, after recovering from cancer. He says that you never stop being a cancer survivor and I guess that is true. I will always be in the system now. I will have check-ups for the rest of my life, starting just after I finish the chemo in February.

But life has to go on. We are looking at our options for holidays next year (having missed our holidays for the last two years). They are limited by travel insurance – it goes through the roof for a cancer survivor, so much so that we may just ignore it, or only get insurance for the other five. We fancy going to France, close to where we were due to go earlier this year, or possibly somewhere more exotic, but that starts to get really expensive. We haven't decided – and this is unusual since we normally know where we are going to go by Christmas. If someone wants to give us a holiday (including insurance), all offers will be gratefully received!

I am also looking to the day when I start work full-time again (and so is my boss). I don't know when this will be – presumably sometime after the chemo has finished, but I don't know how long after. I have a pile of projects just waiting to get started and I don't have the time to do them just now.

I think that is enough for now.

If I haven't spoken to you or sent a Christmas card, then I wish you a Happy Christmas and a peaceful New Year.

Graham

Only so many times

2008-11-20T00:16:00.001Z

Only so many times

Account Graham's blog

People have been talking!

Whispers in the kitchen at work and conversations behind closed doors!

What has happened to Graham's Blog? Why has he not been updating it? Is he actually going to keep us in the dark, after all he promised?

Well, no I am not, but it gets a bit boring saying the same thing week after week…. I am sorry that it has taken me so long to bring everyone up to date. (Ok I will admit that it is a bit of an exaggeration about the whispered conversations and stuff).

I have just looked back at the last post and seen that it is a warning about spam emails, and that the last cancer update was from the 6^th October. That puts it just over six weeks ago, in the middle of Cycle 3. I am almost in the same part of Cycle 5 at the moment. Looking back over the changes in symptoms over the cycles I guess it has been like this.

Cycle 1 and Cycle 2 were relatively easy (albeit with a minor wobble at the end of Cycle 1). The symptoms were relatively innocuous and not too trying. The pins and needles pretty much disappeared after 36 or 48 hours and did not trouble me after that.

With Cycle 3 and Cycle 4 there was a step change. The symptoms themselves were not particularly worse, but rather they lasted much longer. The pins and needles lasted pretty much a full week, before they disappeared. There was also the insomnia that appeared during the first week along with constipation. I thought that this was brought on by the steroids that I take during that first week of the cycle, but after talking to the nurses and the consultant (more of this later) last week, it looks like this is caused by a different drug – one (one tablet) that I take once a cycle, just before the hospital visit. It seems to have a massive effect on my system – not just these symptoms, but it also affects my moods.

I am noticing that I am more short tempered. I find that I have to bite my tongue when people don't or can't see things my way. This is definitely not anyone else's fault. People are not any more obtuse or stupid that week – it is all me. I try not to take it out on the kids, but I guess that every now and again a bit trickles out.

The other thing that I notice is a bit harder to describe. I seem to be detached from reality at times. I see things as though through a tunnel, or a pair of binoculars. Time seems to slow down and my reactions seem to be much more pointed and precise. No one else has mentioned this so I am assuming that this is just my (heightened, over-active) imagination.

I don't want to make this seem more worrying than it actually is. This tends to affect me during this first week of the cycle and disappears after that. It lasts for about tem or fifteen minutes and probably twice or three times during the week, although it is cumulative over the cycles.

At the beginning of Cycle 5 I had an appointment with my Oncologist. Actually, I only met Dr Phillips for about two minutes before I started the chemo and haven't seen him since. That sounds very stand-offish, but I transferred to his care just before the start of the course – I had been under a different consultant at the Western, before coming under Dr Phillips at SJH.

Anyway, I had an appointment about a week ago. He asked a few questions that did shed a bit of light on the way I have been feeling and reacting. It's Official – the general outlook is good – my symptoms are at the mild end of the spectrum and I am reacting well so far. He asked me if my appetite had changed, and looking back at it I guess that it has. In particular, I think I have developed a sweet tooth (or more of a sweet tooth), but I think the steroids have increased my appetite anyway – again, I know I was not a particular nibbler – more of a grazer I suppose, but I think I am still eating more.

Cycle 5 is about half way through. Again the pins and needles are back and probably another step change from Cycles 3 / 4, although not as big a step as the one between Cycles 2 and 3. They are still affecting me just now, although almost gone, but this is day 9 / 10. My hands have also been tenderer, and I have had to go and buy slippers, much to my disgust. We have laminate floors and I can feel the pins and needles in my feet in the mornings.

I am grateful to Ian Wallace, who has been taking me to work in the mornings, when it has been cold. This has been really helpful and makes life easier for me, although not necessarily for him, since I have dragged him away from work to take me home in the middle of the day.

Now for a slight change. One of the reasons for writing this was to help other cancer sufferers, particularly ColoRectal cancer. Colorectal cancer is the third most common type of cancer in the UK, after Breast cancer and Lung cancer. Having said that I have not heard, until recently, of anyone else who has been diagnosed with this cancer. As it happens, I heard of a relative of one of Helens' work colleagues who is about to start her treatment. She is older than me (about 60) and lives over in the west. She has had virtually the same operation as I had and is about to start pretty much the same chemo. I don't know if she will ever read this, but I would like to think that other sufferers will and will feel stronger for it.

As part of that I decided to find out other people who have (or had) colorectal cancer. Probably the highest profile person is Sharon Osbourne. I knew she had survived cancer, but it was only recently that I discovered that it was Colon cancer. I don't know any more than that, but there you go.

Other people are Terry Jones (from Monty Python) and Tony Snow (President Bush's press spokesman - no, I hadn't heard of him either, but he is the man who stands up and speaks for Bush) and Farrah Fawcett. Steve McQueen developed cancer from exposure to asbestos, which moved into his colon. He died of heart failure, after an operation to remove this tumour. Another person who has had a scare is Bush himself. It turns out that he had tests recently, but it was not cancer.

Life just goes on as normal. I know that people are interested in me and how I am getting on. I am very humbled by this interest – I am pretty sure that I don't deserve it but it is encouraging all the same. It does get boring saying (or writing) the same thing week after week, but I will try to keep this blog more up to date in the future.

Thanks

Graham

It should be obvious, but….

2008-10-13T15:37:00.001+01:00

I received this today in a blog written by Microsoft employee. Have a look at the points he makes at the end - they are mostly common sense. I suppose it is a bit ironic that he received this, but it should be a timely reminder to everyone……

<snip>

I had this waiting for me on my home PC this morning.

From: Microsoft [mailto:customerservice@microsoft.com]
Sent: 10 October 2008 02:25
To: {My home account}
Subject: Security Update for OS Microsoft Windows

Dear Microsoft Customer,

Please notice that Microsoft company has recently issued a Security Update for OS Microsoft Windows. The update applies to the following OS versions:

Microsoft Windows 98, Microsoft Windows 2000, Microsoft Windows Millenium, Microsoft Windows XP, Microsoft Windows Vista.

Please notice, that present update applies to high-priority updates category. In order to help protect your computer against security threats and performance problems, we strongly recommend you to install this update.

Since public distribution of this Update through the official website http://www.microsoft.com would have result in efficient creation of a malicious software, we made a decision to issue an experimental private version of an update for all Microsoft Windows OS users.

As your computer is set to receive notifications when new updates are available, you have received this notice.

In order to start the update, please follow the step-by-step instruction:

1. Run the file, that you have received along with this message.

2. Carefully follow all the instructions you see on the screen.

If nothing changes after you have run the file, probably in the settings of your OS you have an indication to run all the updates at a background routine. In that case, at this point the upgrade of your OS will be finished.

We apologize for any inconvenience this back order may be causing you.

Thank you,

Steve Lipner

Director of Security Assurance

Microsoft Corp.

-----BEGIN PGP SIGNATURE-----

Version: PGP 7.1

Now there are a number of things which jump out and say THIS IS A FAKE , notably the greeting "Dear Customer" [someone who has your email address but not your name is suspicious for starters], the grammatical errors and clumsy English the incorrect names. Also the fact that when you sign up for Windows update, Microsoft don't get your e-mail address. I give it a plausibility rating of about 3 out 10. But this seems a good time to remind people Never, ever run executables which arrive unexpectedly by mail. Outlook has blocked executables for since about 2002 so I didn't get to see what the file was – although it was named to make it look like a valid patch.

The same rules apply to mails which tell you to go to a web site and enter information. My bank, e-bay and paypal have all said much the same thing. "If we need you to do something on-line we will send you a mail which addresses you by name, and says go to the normal web site, log on normally and then follow these steps. Anything which says dear customer, click this link and enter private information is a fake."

YOU probably know this already. By all means warn people about this specific mail, but far better to remind people you know who might be taken in of these basic rules.