11th Dec2008

Don’t ask, don’t tell

by Dutchcloggie

JD has, according to the Oncologist, a high likelihood of her tumour being a Grade II Astrocytoma. Inoperable because it has invaded the Corpus Callosum and there are signs of invasion of the Thalamus. This sounds really scary when they say words like ‘invaded’ and ‘inoperable’ but how bad is that really when it comes to daily life? I mean, the smallest sign of tumour is considered ‘invasion’ but that does not mean it is aggressively invading and growing, like an ivy plant growing up against the wall and eventually invading the wall of your house, pushing the bricks and mortar apart to get in.

RT starts in January and the Oncologist said: This will work. But will work for what? To stop the tumour growing further? For a while or for good? Is it a 99 certainty with these tumours that they will grow back eventually?

I kind of want to know if, in the end, this is going to be fatal. Even if it is in 10 or 15 years. I just do not want to have the idea that this can be cured completely only to then find out in a few years time that I was wrong in that belief. I know that it can be years after treatment before it comes back but none of the doctors have said anything about long term prognosis.

I wonder if long-term prognosis is a case of Don’t Ask, Don’t Tell. If we don’t ask them abut it, why should they say: “You do realise this will kill you in, on average, 15 years” for example.

Somehow I don’t want to know if this is fatal in the short term but I do want to know if, in the long term, this will be fatal.

Every time I think: if only I knew the answer to –insert question here–, I will feel better about things, more in control. And then we get the answer an a new question comes up and I think: If only I knew the answer to THIS question, I would have a better idea of how to handle this.

09th Dec2008

Always alert (or scared?)

by Dutchcloggie

JD has been preparing for the radio therapy which will start on January 5th. On the 23rd of December, she’s having her final planning appointment an then we are ready to go.

She has been on quite a high dosage of Dexamethasone for a few weeks now (8mg twice a day) and she is having side effects such as indigestion, feeling weak in the muscles, having a huge appetite and so on. She is definitely getting more round in the face but I actually find it kind of cute. It is unfair that the drugs she needs to take to reduce the swelling in her head simultaneously increase appetite and reduce your strength to exercise.

JD has not had a seizure since the very first one that announced the arrival of the tumour, almost 4 years ago now. And yet, I always remain vigilant for signs. Any unexpected twitch or rolling of eyes puts me on high alert. I guess I am never completely relaxed since she got ill. Whenever she is in a different room and silent for a bit, I call out to see if she’s still OK. She always is of course but it just makes me feel better. I used to cycle to work but I don’t anymore, in case something happens to JD and I have to rush home. Small things like that just change your habits.

Last night I had a proper scare through. Or rather JD had a scare. She got up off the sofa to get the paper from the bedroom (about 6 metres away). When she had not returned after a minute, I called to see if she found the paper. No response. I called again. No response. Still too lazy to get off the sofa, I called again. Or rather, I yelled quite loudly. No response.

Now I was worried. I walked to the bedroom and found JD lying on her back on the bed with pupils so big you could hardly see any of the colour of her eyes. I asked her if she was OK but she just stared at the ceiling and did not say much. I asked her what was up and she slowly managed to form a sentence, telling me she was ‘just having a little rest’. Obviously that is rather weird as she was just going to get the paper from the bedroom and come back to the living room. I was really worried at that point and thought she was about to have a seizure. She had that weird, vacant stare and disoriented speech.
After 2 minutes, she sat up and said she was fine. The whole thing had felt like some kind of headrush to her but different. She said when she got to the bedroom, she suddenly felt really tired and decided to lie down on the bed and then it was all a bit vague for a minute or two.

Weird. A bit scary that is. It might have been a headrush, nothing more than that but combined with the suddenly massive pupils, I felt it was a bit freaky. Maybe it has nothing to do with her brain tumour. Maybe it has everything to do with it. But I hate how the thing just changes your life in small ways. How you are simply a little less relaxed every time something happens.