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.

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.