I posted in the brain cancer forum and the friends and family forum about my daughter - late 20s, two young children - and her grade 4 terminal glioblastoma. The response that I had from the community was beautiful and helpful. Thank you.
But, the update is not good...
After 30 sessions of chemo and radiotherapy we had a short break (even squeezed in a lovely family holiday). Then her birthday arrived, as did a seizure, the first since this thing started back in May. Five days in hospital later, we finally got the scan results which showed that, despite treatment, the tumour had grown. It seems to have made considerable growth.
The chemo follow-up we had discussed was now off the table and my daughter is on lomustine instead - just two tablets. One two weeks ago and one between Christmas and New Year. The potential side effects are terrible and she is finding it hard to maintain the positive outlook she has been able to present (albeit somewhat of a mask).
Now, she has been in bed for four days, tired, in pain, permanently dizzy (so much that she can barely walk, and going downstairs is a huge ordeal), and a permanent throbbing headache. I have just been lying on her bed with her and my heart is breaking - "I don't know what to do", "This is not me", and much desperation. Frustration at what is happening, a concealed fear (could be the brain tumour that is helping to conceal the emotions) that this may be the beginning of an unstoppable descent, and worry that, if she does go into hospital, they may confirm her worse fears and not be able to do anything to help.
I suppose I am seeking your experiences. Does this sound familiar to anyone? My daughter has decided, in her own mind, that this is the last Christmas, the last boys' birthdays she'll be here for, the last Halloween, the last New Year and so much more. Even hearing her saying those things is so so sad. However, for now, I would like an idea of whether these are, as she has researched, the beginnings of end-of-life symptoms, and things we can do nothing about, or whether they may be recognised as symptoms of the lomustine, which might improve in a short while (for the short / medium term, at least).
I hope that makes sense. Both she and I just want to have a clearer idea what is going on. The cancer is awful. The uncertainty is almost unbearable.
Thank you.
Hi TB67
I'm glad that you found replies you've had in the past from members of the forum helpful.
I'm not a member of this group but noticed that your post hadn't had any replies yet. This group tends to be a bit quiet but I can see you've had replies to the same post in the brain cancer group which I hope you've found are supportive.
How is your daughter now and how are you? Don't forget that you're welcome to chat to the Macmillan Support Team on 0808 808 0000 anytime that you feel that talking to someone might help. They're available every day from 8am to 8pm.
((hugs))
"Never regret a day in your life, good days give you happiness, bad days give you experience"
