Glioblastoma

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whoa don’t know where to start, 2 weeks ago yesterday I took a seizure in which I do not remember anything for a few hours prior to this till a few days later.
anyway I got took to hospital, given mri, ct and X-ray. Told I had a brain tumour a week past Friday, surgery last Friday and told yesterday it was a giloblastoma. I am a 46 year old teacher with 3 kids (twin boys 22 and daughter who just turned 24) oppps just realised I am 47 today, what a birthday.

I am due to start radiotherapthy and chemo in 3 weeks time as waiting on scar healing and getting mould fitted etc and also willing to join any trials and do whatever it takes to help me and my family.

I am being positive and trying to remain strong for my family and for my treatment. It’s hard, it’s all the questions, why me? Etc

I am having headaches but my pain killers don’t seem to help, any suggestions, I am drinking loads and loads of water and tea and trying to eat healthy. It helps to talk and be positive but headaches and sick feeling can get bad that it wakes me up, I get roughly 4-6 hours sleep each night.

thanks in Ada Vance for any help

Llamalover over 3 years ago

Hi JeanaW

So sorry to hear what you are going through. It is such a shock to be told you have a brain tumour of any sort. My husband has a glioblastoma and has had the same treatment you describe. He is 69 however, and although he tolerated the treatment and the craniotomy really well, he did have side effects from the chemotherapy. Everyone is very different, though, he wasn't sick or lose any hair.

About 3 weeks after the radiotherapy finished he became very fatigued, but the oncologist explained that would happen.

It is a very hard situation, but if you have access to Macmillan nurse or an oncology nurse, ask any questions you may have and explain about the pain killers not working. There might be something else you can have instead. You need your sleep. My husband takes a combined sleeping tablet/anti depressant and they help. He has only had that since treatment finished though.

Do all you are doing with eating healthily, trying to rest and most of all be positive. Explain to your children what is happening too and any other family members. Don't carry this burden on your own.

Take lots of care and try to be strong,

Thinking of you

Llamalover xx

JeanaW over 3 years ago in reply to Llamalover

thank you so much for your reply.

I think I have access to all you mentioned just been a whirlwind few weeks, I managed to speak with my gp and changed my pain killers for the headache so hopefully that helps,

I was diagnosed with IBS before all this but not given any medication of anything for that and think that has a big part to play in my lack of sleep also as have abdominal pain most nights, which make me very restless.

my partner, kids and family have been absolutely amazing and I am certainly not alone.

it is nice to talk to others also who are in a similar situation.

many thanks again

Llamalover over 3 years ago in reply to JeanaW

Hi ,

Pleased you have sorted out some medication. IBS is not pleasant, I suffer from it myself, but only mildly. Sometimes, I assume its stress related. Good that you have family around you, they are such a comfort.

Take care and very best wishes to you,

Llamalover xx

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