05th Aug2009

Temozolomide

by Dutchcloggie

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, even though 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 radiotherapy 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 nothing 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 callosum and thalamus. 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.

12th Aug2009

More misery

by Dutchcloggie

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, 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.

13th Sep2009

She’s shrinking! (But not the tumour)

by Dutchcloggie

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.

03rd Jan2010

2009: an overview

by Dutchcloggie

As it is a new year, I thought it would be a good idea to look back at 2009 in a really quick summary. So what has happened this year (and, more importantly, who cares about this kind of self-indulgent navel-gazing??)

January – June
JD had to have radiotherapy on her braintumour. Every day for 6 weeks we got in the car for an hour to have 10 minutes of treatment. We had been warned about possible side effects but let me tell you: radiotherapy to the head is fucking devastating. Only in September did JD start to recover from the damage. No concentration (and I mean: not even for 2 minutes!), extreme lethargy, forgetfulness to the point of forgetting to eat and forgetting what day it was, non-stop eating, depression, lack of initiative, self-centeredness, inability to understand emotions, both her own and other people’s, unable to plan more than 5 minutes ahead, not able to have a phone conversation with the radio on, the list goes on. We were not properly warned and for the first time since she was diagnosed back in 2005, I really felt like screaming, hopelessly desperate and unable to see a light at the end of the tunnel. I just could not see how JD would ever get better again. And I am not talking better from the tumour but just recovering from the damage of the radiotherapy.

Life just stopped being anything like it was before and I had a tough time living my own life as well as living JD’s life for her more or less. I don’t care if people think I am being selfish for saying it was difficult for me (after all, JD is the one with the nasty tumour) but it was. So there.

June – December
Life has a funny way of throwing things at you. In June I read something in a local rag about Spratton Folk Festival. It said all-female group Invocal would provide the local flavour to the festival. So I checked them out. Found they were looking for a singer. Agonised about it for days (am I good enough, I’m shit, really), got in touch, did not get the job but ended up as their ‘manager’ in the end.
No idea what a manager does so I just jumped in, started about 50 things at the same time, then drowned in ther amount of work I started and did not finish (ADHD much?) but managed to do some good stuff in between. (video, brochures, PR, general organising, whatever). The only thing I have not managed to do is book any gigs. Bit of a bummer really… keep working on it. (see how I managed to avoid saying I am talking about Invocal here!)

Anyway, it is absolutely lovely to be doing something in music again, even if it is not performing and playing. Sometimes I feel like a groupie and a fraud. But I just love being around music and people who make music. It just feels like a lovely warm blanket. The unexpected side effect is that I have also made some new friends and I have actually seen more pubs since June than my entire life before then. Yes, I have a social life. Well, I had one before but not in Northampton. Never got round to building a new one after moving here.

JD recovered well from the radiotherapy but has lasting trouble with her concentration and some remaining lethargy that may not go away. Unfortunately the RT did not help & the tumour actually changed in to a Grade 3 Astrocytoma in certain places which means it went from wholly benign to partly malignant. Bummer.
So she started chemotherapy in August. 5 days of Temozolomide per month. For 6 months initially. She will be on that for as long as it stops the tumour from growing. Which may be for the rest of her life. IF it stops it from growing. We’ll know after the first post-chemo scan in February 2010.

My sister gave birth to her second daughter, a tiny little puppet called Alessia. Hurrah. Now my folks are proper grand parents I am I am officially off the hook for providing the offspring. Phew!

That’s about it really. Other than a lovely holiday in France and erhm….lots of other stuff I have forgotten about for the moment.

Resolutions for 2010:
– Book more gigs
– Be more organised
– Go out more
– Make money & get paid
– Find a cure for AIDS & brain tumours

13th Mar2010

I’m alive!

by Dutchcloggie

So. After months of nothing, here is a new blog post. Really only because my mother told me off for not posting anything. Bit strange because she calls me every week as wel so there is nothing she does not know already! Nevermind. I guess I should be happy that she cares so much.

So what has happened since January?

Well, the best thing is that JD’s brain tumour treatment is finally working! The first 6 months of chemotherapy (Temozolomide, for those who care) has resulted in the malignant cells becoming undetectable on the scan and the benign areas of the tumour shrinking considerably. Yay! So for the next 6 months, she’ll continue with the chemo and hopefully things will keep improving.

JD and I went on a lovely snow trip to Andorra last week. Lovely snow, cheap booze. Snowboarding went quite well but I did fall over a few times. Nothing serious though. Next year I think I’ll take some lessons because I want to get better than I am now and it seems I am too afraid of falling to improve without some extra help.