I am looking to chat and share experiences with people diagnosed with stage 4 brain tumours. I was diagnosed middle of September this year having had no symptoms until I had a seizure at home out of the blue. 3 days later I was at King College Hospital being told I had a brain tumour and needed a craniotomy. Two weeks later I was told that I had a stage 4 tumour and was looking at palliative treatment only. I am having radiotherapy 5 days a week and having to travel 1 1/2 hours each way to the hospital but also doing chemo at home 7 days a week. It’s been the most awful shock. I was only a few months off retirement and had all sorts planned. It’s trying to come to terms with it all and not knowing how much time I have left. So I am just giving myself short term goals. I am very aware that there are many people worse off than me. At least I made it to my 60s and currently not in any pain.
I wondered what treatment other people in a similar situation as I am are receiving?
I wondered if anyone else is struggling with having to wear the mask for radiotherapy. I find it so tight and confining that I struggle not to panic. Also I am finding that my face is getting very dry and itchy, and also my face looks quite red. I have asked my consultant and she said this not a side effect and just to keep moisturising which believe me I am slapping it on. I am currently doing 6 weeks on and then I will get 4 weeks off and then I have to keep going for another 6 times of 6 weeks each providing my body copes.
I have also had a lot of trouble dealing with the lack of money and setting up benefits initially. MacMillan were very helpful to me with support on this.
Thank goodness for friends who have really supported me. You really find out who cares and who doesn’t. Luckily I seem to have a lot of very good friends. I am also trying to support some friends in a similar situation but with different cancers.
Many thanks in advance for any help or advice.
Hi seastar. Welcome to the community. So sorry to hear your news. Doesn’t seem right to work all your life then not enjoy your retirement. I hope the treatment manages to keep you well for a long time.
Regarding your mask. Have the techies cut eyeholes in it? That helps the squashed in feeling an awful lot. Moisturising? Maybe you are using the wrong one. I had to stay away from E45 as I was allergic to it. Your team might give you Diprobase or Cetraben which are much better, or you can try Aveeno from the chemist.
Brain cancer has its own section too. If you post there you will surely get a better tailored answer.
community.macmillan.org.uk/.../brain-cancer-forum
Good luck xx
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
