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.