BunnyFactor10

Invocal - Sex

2009-11-04T13:37:00.002Z

I bought a video camera the other day and I used it to film an Invocal gig. Obviously cameras with Auto focus do you like candles flickering and the quality is pretty poor. Especially if you compare it to the video I recorded on my little mobile phone which is almost even better!

Needless to say I returned the camera to the shop and got my money back.

In the meantime Invocal are working on a nice video that should be ready soon. I mean like a professional one with real camera people and stuff....

How are things...

2009-11-01T11:41:00.001Z

Long time no news. Things are going as well as can be expected I guess. JD is still on the monthly chemotherapy cycle and is about to start the 4th lot. We have decided to wait with surgery until the first 6 month cycle of chemotherapy is finished in January. they will then do a scan which may give us some idea if the tumour is actually being held back by the chemotherapy. we know there is no cure so long-term remission is what we are aiming for. For the moment JD is physically healthy and back at university to work on her PhD which is a great motivation.

In the mean time I am really busy with trying to get more Invocal gigs and publicity but I am feeling a tad out of my depth. They are absolutely brilliant and deserve a break and sometimes I feel I just won't be able to give them what they deserve. I guess it would be easier if they were just kind of average because hen every gig is a bonus. But because they re so good, it is frustrating that other people don't immediately jump on board and give them gigs etc. Perhaps it is time to realise I can not do everything and I should call in help neon a booking agent to help themget gigs. Agents have loads of contacts that I just don't have.

Selling Poppies

2009-11-01T11:21:00.001Z

Selling poppies today in support of the Royal British Legion. They support veterans from all wars. Nice to spend a few hours for a good cause.

This week is International Brain Tumour Awareness Week. Will do some fundraising for them as well. Good karma.

my first ever!

2009-10-29T21:06:00.001Z

cut my first ever pumpkin today. yay!

Glee.....sigh

2009-10-18T11:51:00.002+01:00

Glee is my latest TV love fest. Good clean fun. With jane Lynch. If you liked Tracey Flick in the movie "Election", you'll love this. You have to skip over the music bits that are a little too High School Musical to my taste but the dialogue is great, witty, sarcastic (yay, Americans DO understand sarcasm it turns out).

Catch it online if you can. Really. There is never too much Jane Lynch. And I am saying this purely on artistic merit because she ain't pretty. Just damn talented. And funny.

I think.

To cut or not to cut?

2009-10-07T12:59:00.000+01:00

Another doctor's visit this morning. JD is about to start month 3 of her chemo therapy (Temozolomide). So far she has tolerated the first two treatments really well. Things are going better all the time with her, apart from the tumour obviously. She is losing weight, she is fitter, back to fencing and back to university. She has taken on mentoring some students or something so it is all very positive. It seems she has finally recovered from the radiotherapy.

But then last week she had a headache. She says it was 'one of those' headaches that indicated pressure behind her eyes (which would indicate the tumour is growing or at least the brain is selling for some reason). It only lasted a day but obviously enough to get worried.

Today we met with the Neuro Oncology nurse who keeps track of JD's treatment. He said the Neuro Surgeon thinks he can remove parts of the tumour. Our initial response was: great news, cut it out, any reduction in tumour is great, right?

On second thought, things may not be so black & white. JD is doing really well at the moment. She is tolerating the chemo really well, is back on track with PhD and everything.

So, if the headaches are not returning (yet), why would she go through the surgery? Apparently it takes longer to recover from second surgery, especially after the radiotherapy. So that would mean delaying the PhD once more which may have impact on her funding. There does not seem to be an urgent need for surgery right away. We initially understood that they could cut away some of the parts that have turned from Grade 2 to Grade 3 but that is not the case. They can remove just some bits of the tumour that they can safely get to.

So the Neuro Oncology nurse suggested she has an Outpatient appointment with a Neuro Surgeon to discuss the options first.

I think JD is leaning towards no surgery at least until they have done another scan after the first 6 month Chemo cycle. Unless of course the headaches suddenly return and get worse.

Obviously this decision has nothing to do with the fact that surgery soon will mean no ski trip in January :-)

hat do other people feel about these choices? Remove it as soon as possible, or remove it only when there is a medical need?

Invocal in the Park

2009-09-22T11:25:00.003+01:00

I think I am spending entirely too much time on Invocal. Things on my to-do list at the moment:

- Design new website
- Get website built & sort out hosting
- Organise photography session for new promo shots
- Sort out new promotional materials
- Get gigs booked
- Get more press coverage
- Update MySpace & Twitter with regular news
- Keep mailing list updated
- Organise a video shoot & manage creation of videos

Needless to say JD is getting a *little* bit frustrated with the amount of time I spend on Invocal. But on the other hand, she loves that I am doing something I enjoy immensely. And the music is nice: Acoustic, folk-ish, funny and from Northampton to boot :-)

This weekend, we went to The Racecourse in Northampton to take a few new photos. I took my camera along and then I shot a little bit of video. Since I don't have any decent video editing software, I used Windows Movie Maker (EVIL program!) to create a short film of a minute.

Invocal in the Park from Invocal on Vimeo.

This morning, Northampton acoustic group Invocal took to The Racecourse to have their picture taken. Things are never simple with that lot...

Julie and Julia

2009-09-16T22:02:00.001+01:00

Just about to leave the cinema after watching Julie and Julia. What a wonderfully entertaining film. With nice food and harmless acting. I suppose it should make me want to cook but it made me want to blog.

She is shrinking! (but not the tumour)

2009-09-13T08:25:00.002+01:00

Oh no! Someone come to my rescue. My wife is vanishing before my eyes! Since she has stopped taking steroids, there has been less and less of JD but in the past few days, things have really taken on a new degree of speed. Weight is now flying off. Yay. So much so that we went to H&M yesterday and bought a nice pair of jeans. After about 6 months in baggy trousers with elasticated waistbands, JD can wear a pair of jeans again and feel 'normal'. I am sooooo proud of her. She looks lovely and thin in the jeans. And it makes her feel better as well.

The irony in this is that she looks better and better and people are commenting on how good she looks and yet, she is in actual fact not getting better at all!

This week sees the second round of chemotherapy. Officially the course of Temozolomide is planned for 6 months, then a scan and then perhaps more chemotherapy. I asked the doctor what would happen if the scan shows the tumour has stopped growing after 6 months' of chemo. His answer was that JD would then continue to take the Temozolomide. So as long as the tumour does not grow further, she will keep doing monthly cycles. He said: I have patients who are doing really well and are already on their 38th cycle of chemotherapy.

When I think about the deeper implications of what he said there, I don't like that at all. So 3 years of monthly chemo and still alive is considered 'really well'.

Don't get me wrong, we are positive and will just continue to do the things we do as much as possible: play tennis, JD continues her PhD and stuff. But the fact that the tumour is not giving her any problems at all and yet it is apparently so dangerous that it requires the severely aggressive treatment is hard to take sometimes.

Why not become an Invocal fan?

2009-09-06T00:48:00.002+01:00

I want it all

2009-08-26T11:26:00.001+01:00

I want to eat all the cheese here. I want to eat all the lovely fish and the wonderful dried sausage. I want to eat and not get fat. Alas. Impossible. So i wil just eat now and diet later.

Black chicken

2009-08-21T20:20:00.001+01:00

My latest purchase this afternoon was a bbq from the Super U. Feeling very french with my wine and haricots verts. However, the blackened pieces of chicken on the bbq are proof that we are really from britain. My parents have clearly lost their mind as they have decided to drive the 300 miles from Holland to come and see us for a day! They have been really worried about JD and really wanted to come for a visit. Insane if you ask me but very sweet. Looking forward to seeing them.

Camping Gaz family

2009-08-20T18:25:00.001+01:00

When i was really little, my folks used to take us camping and have fond memories of my sister and I being in bed in the tent with my parents outside in the dark, having a drink and reading the paper. They did not use a torch but a Camping Gaz lantern. The slight hissing sound it used to make whilst burning helped me fall asleep. And now i finally have my own for the first time ever. And it makes me feel kind of strange. Takes me back to my childhood and makes me feel like an adult at the same time. No longer do i have to make do with sub-par battery powered torches. No, my lantern burns brightly. Well, it will later tonight. In the picture is also a very very old Camping Gaz stove that my parents passed on to me a few years ago. I think it is over 20 years old but still works like a treat. We are in Yport in Normandy after a day's driving. JD is having a sleep before we go for dinner. Am reading about how to manage a band whilst listening to Invocal. Holiday is bliss.

Headline of the day

2009-08-15T16:25:00.001+01:00

Laughing so hard it hurts

We love the NHS

2009-08-14T17:56:00.003+01:00

I have been trying to come up with a good opinionated post about why I am so angry about what the US right-wing numbnuts are saying about the NHS and the general direction of the healthcare reform debate overthere. But I just can not get past my anger and exasperation.

The US is being run into the ground by Republicans who will oppose anything Obama says, just because it is Obama saying it. Even if they actually AGREE with what he is saying.

For example on Living Wills:

Visit msnbc.com for Breaking News, World News, and News about the Economy

Then there is the burning hatred that is tearing the country apart. People with guns, people holding up signs saying Obama and his kids should die, people painting Swastikas and Hitler mustaches on Obama's face.

I don't care if Americans want to kill each other. I just don't understand why they are doing this to each other. I know HOW they are doing it: The right has an iron grip on Fox News. The moderate people do not have anything as powerful on their side.

Faux News' latest gobsmacking idea: The NHS is a breeding ground for terrorists. You see, because of the Stalinist healthcare system in Britain, doctors get paid a pittance. So not many Brits want to be doctors. And so the NHS recruits from Muslim countries. And in a huhge communist system like the NHS, they become invisible and can do whatever they want. And they end up bombing Britain. All because of a National Health Service.

AND AMERICANS BELIEVE THIS! There is NO news editor at Faux News that says: that is not even news, it is ridiculous. No. It is put out there. As news. And Americans believe it.

And that just almost makes me burst in to tears. Because I just can not understand how you can possibly even entertain that notion, let alone broadcast it on a news channel.

Needless to say, I love the NHS at the moment. They have been nothing but spectacular with JD's brain tumour. Never had to wait for a scan or appointment, never had appointment canceled, never had doctor who 'did not have the paperwork', I can email the oncology nurse a question and he calls me back within minutes.
I dread to think of the amount of money I would have had to pay for JD's treatment if we had been in the USA. In exchange for saving her life, I will gladly pay more tax. Or wait 4 months for that elective surgery.

More misery

2009-08-12T18:10:00.002+01:00

So, the result of JD's PET scan was not a happy one (Not that we expected that).

Scan shows clear area of high uptake and increased metabolic rate in the right anterior frontal lobe. On the positive side, the Oncologist thinks the surgeon might be able to take the offending Grade III bits out, something they will get back to us about. I assume that is a good thing as it means it will at least slow things down a bit.

She is still starting the chemotherapy, Temozolomide, tomorrow for 5 days. At least we can apparently go on holiday because any side effects of the drugs are only expected to last for as long as she is actually taking the tablets. So we're off to France. Yay.

JD is much better about this than me. In fact, she went to see her PhD mentor after the hospital visit. I am feeling depressed and deflated after it all. This is not a curable illness. I think it is starting to sink in that, let's be honest, she will die of this sometime (assuming she doesn't walk under a bus before then). If she's lucky, it will be 10 years, rather than 1 but that is still not good enough!

I should be strong and organised and supportive for JD but right now, I just want to leave my job, my house, my car, Northampton, get all my money together and travel around for months, together, not worrying about anything. With no set time to return, no responsibilities. Just go away.

But apparently that kind of thing is only acceptable once things get 'really bad'.

Might go home now and have some booze and a good cry.

Temozolomide...sounds scary

2009-08-05T15:15:00.003+01:00

JD went to the Oncologist this morning to discuss the results of her first MRI since the radiotherapy. We were very hopeful because she has had no problems with the tumour at all, eventhough she has finished with the steroids. We thought: That means the thing has shrunk and that is surely good.

So to say we were gobsmacked when we were told the MRI showed signs of a change in tumour type is an understatement. He said there are indications that the tumour is progressing to a Grade III in certain parts. Next week, they will do a PET scan to see if this is indeed the case but either way, he wants to start Jane on a course or Temozolomide. Chemotherapy.

Hmmm....not what we were hoping for. The thing has changed from large Grade II to small Grade III, hence JD had no headaches etc.

They way he talked about it sounded all a bit casual. As if it really was only a tiny set back and that the chemo would possibly cure what the ratiotherapy was not able to do.

I am very confused about this. In the past 4 years, since discovery and initial surgery, the attitude of all doctors has been: not to worry, we just want to treat it to be sure it won't get worse. And yet, the result of each treatment has been a, small, step in the wrong direction.

Surgery: they said it was a small tumour and that they might as well take it out whilst they were there for the biopsy. They also said it might come back or it might never come back. RESULT: They were unable to remove it all, it came back and they were never able to take a proper biopsy.

Radiotherapy: they said it was nothign serious as yet but just to be safe, let's do a course of RT. In a high dose and the aim is to cure. A small risk of changing grade. RESULT: It didn't kill it and it looks like it changed grade but it might not have but either way she'll get chemo, just to be sure. Oh, and he said: well, it IS a rather large tumour....something else we were never told before.

Chemotherapy: he said he has many patients who have been on many cycles of this drugs and are doing fine. The aim is to cure so that it might never come back. RESULT: ?

My point is, how are we supposed to judge how serious this is getting when the doctors keep giving us the impression there really isn't anything to worry about yet and that they are just giving JD the treatments almost as a kind of precaution.

They are all tiny steps in the wrong direction and it makes it really hard for us to feel upset or scared or deal with the emotions because every time, we are given the impression things are really not bad yet. And so we are in some kind of emotional limbo. Almost like the progression of the tumour keeps creeping up on us. A bit like when people gain weight: it happens slowly over time and goes almost unnoticed, until it is too late and suddenly people realise they are fat. It feels like that: small things are added all the time to this story and yet, we don't really respond to it emotionally because it is such a tiny bit of news. So I am waiting for the moment where the doctor will say: well, we have tried all we can but it is now 'officially' incurable. I am afraid that when that happens, we will be shocked because we did not realise that is how bad it was...

Does that make sense?

I know doctors are trying to protect you from thinking the world is going to end right away but this half-baked attitude is so confusing: if it really wasn't such a problem, you would not give radiotherapy and chemo therapy! Just be straight with us! Over the past few months we have found out, via casual bits of info just dropped into the conversation by the Oncologist, that the tumour is actually quite large, is inoperable, has invaded the corpus collosum and thalmus. These sound like pretty serious bits of information that we were never actually told properly. And now there are signs it is changing to Grade III in parts. How the hell do we know how worried to be?

There. Rant over.

Feeling better now. Now where is that bottle of Scotch I bought.

On the practical side: it probably means our holiday to France is off in 2 weeks. Nobody will give JD travel insurance with a brain tumour and chemo therapy...:-( I am SO upset about that, you won't believe it.

Heaven

2009-08-02T13:55:00.001+01:00

Guitar tent at cambridge festival. I want to buy something! I want i want!

Cambridge folk festival

2009-08-02T10:49:00.001+01:00

At the cambridge folk festival. First experience of the day is already totally awsome: a songwriter workshop of am hour and a half by Beth Nielsen-Chapman. So brilliant in its simplicity and very informative about the process and art of songwriting. Makes me want to home and try to write a song.

Invocal promo material

2009-07-30T17:38:00.003+01:00

There we go. The postcard/flyer for Invocal is finished. Quite a decent start I'd say. Created a logo & house style.

Important work

2009-07-24T13:32:00.002+01:00

Am working on a press pack for Invocal. Since i have no design skills at all, i am clinging on to my Dummies guide for dear life. Fun to do though. Steep learning curve.

Invocal - Part 2: I am a manager

2009-07-16T17:23:00.003+01:00

A few weeks back, I went to see Northampton band Invocal, as you may remember from my previous post.

As it happened, Invocal were looking for a new singer to join them as one of their members was rude enough to have a baby and leave the group. I auditioned but I did not get the gig. But things move in a mysterious ways and somehow, it looks like I have now ended up as their manager.

Yes, yours truly is now the manager of a real band, with real gigs and real CDs.

How does a manager do? How much time will this take me? How will I do this? How will I not let them down? I met with Rosie Swayne of Invocal today at lunch to discuss the options. I was honest with her in saying I have never done anything like it before so I'll need help. What I do have is a flood of ideas, some of which may never happen, others are easier for me to implement since I know people in design & video (we're already talking doing a video now).

Will I have to give up playing rugby as this will take up a lot of my spare time?

I really want to do this right as this is a great band that needs to play more gigs as they are a real treat to watch live.

This week I will be putting together a list of things that need doing: Press pack, press contacts, list of festivals to target next year, find my way around how to book your band, how to get them noticed etc. The aim at the moment seems to be more gigs and secondly sell more albums.

Anyone know how to get a good band playing at the Edinburgh fringe festival?

Anyway. There you have it. Invocal. You heard it here first. Now go and buy their album.

We are going on holiday!

2009-07-09T12:19:00.000+01:00

Not yet unfortunately but in August! Yay! 2 weeks away to France. My sister is hoping to give birth to kiddie No2 then as well so once we are on the mainland, we can just drive on to Holland if she is kind enough to deliver whilst we are in EUrope.

Other than that, the plan is to go camping in Brittany and cycle parts of the Nantes - Brest Canal. That is a nice and flat route to keep JD happy, and nice and cycling to keep me happy. We have ordered a nice book from Amazon about the canal and a map of Brittany so we are all set. Now all we need to do is decide where along the canal we will set up camp. We won't cycle the whole thing but just day trips here and there. I am BEYOND excited.

In other news, JD and I have gone back to the gym and I am SO proud of JD. She was focussed, put effort in, sweated loads and even signed up for a 6-week fitness plan specially put together for her. Last time we went to the gym, she was unable to concentrate for more than 2 minutes, kept stopping and did not sweat at all since she put no effort in: lost concentration before she even got going.

All these little things make me feel really positive about the future: she's really getting better. Yay. Bring on the holiday!

Bike found

2009-07-02T20:09:00.001+01:00

On our way to the pub for a nice waterside dinner, JD spotted a shade of blue in the bushes. It turned out to be this lovely brand new Raleigh folding bike. No really, it is brand new, probably used only to escape the cops or the keeper of the shop from where it was stolen. It will be on Ebay shortly and it will be subsidising the fixing of the dent in the car that someone made and then drove off,

Dottie the (lesbian) Sock...

2009-07-02T09:47:00.005+01:00

...and how she found her match.

A book about something we can all relate to: A sock that just can not find her match. We have all been through it: somehow, you have socks that just don't go together. No matter how many times you wear the two odd socks together, no matter how much you try to make them in to a pair, it just does not feel right.

That is how Dottie feels. She's a cute sock, looking for her match.

She won't give up until she finds [her match]. She asks her Mom. She asks her Dad. She asks her Sister. She asks her Brother. She even asks her Nana and Papa. She doesn't find her pair, until she looks inside of herself and follows her heart.

Dottie is a lesbian sock.

Christine Gayle wrote a cute children's book about looking for that other person who makes you complete. And in Dottie's case, she is just a girl sock, looking for another girl sock.

Needless to say this book has caused outrage in the US.

In a rather funny article about the book,After Ellen says:
When Dottie was released last week, Gayle began receiving emails from angry parents saying there should be some kind of Big Gay warning on the outside of the book. It seems so non-threatening, then you open it up and — BOOM! — homosexual stockings. How is a kid supposed to recover from something like that? Oh, and also: writing about lesbian socks will cause God to doom America to hell.

I am laughing still after reading that article. Both at how funny it is, but also, sadly, at how ridiculous, once again, American parents are about anything that might have anything to do with educating people about homosexuality.