Glioblastoma Multiforme stage 4 diagnosis

Have you discussed your head pain with the medical team? I was warned of post surgery pain from the wound although I didnt get it, but-your surgery sounds a long time ago, so maybe you imagine its regrowth causing the pain and want a scan to rule that out?
What was so difficult about the mask fitting? Is it worry about having the mask on every day thats making you question if you want the treatment? 
 SO …nobody can make you have treatment… if you elect not to, there is, I imagine a higher chance of an earlier demise . You could begin the treatment and if you cant cope pull out later, but you probably cant  refuse now and then cone back in a few months and start it then. 
I viewed it that however unpleasant the treatment was (although mine was fine) its actually a few months which might buy years of time, a fair bargain I felt. 
good luck 

Odette,

So sorry for your pain and uncertainty.My husband was diagnosed with GBM 2yrs ago and was operated on with the majority of the tumor removed.He had radiotherapy and still has chemo tablets, he hasn't had any side effects of either treatment and his major inconvenience is not being able to drive.

He works full time, does sports 3 times a week and we go on many uk holidays.

He originally wanted to take a natural path and didn't want treatment,I'm very glad he chose not to and so is he.

HI Odette

a warm welcome to the online community. Oh what a lot you've had going on. No wonder you are feeling overwhelmed by it all.

No one can force you to have treatment but can I suggest that you speak to your medical team about the head pain and about all your concerns here. I'm not medically trained but I did support my late husband through the 3 years of his GBM journey so I can empathise with what you are going through. He hated getting his mask fitted but you've now done the hard part. Once the treatment starts, assuming you go down that path, it won't feel so bad as the mask is person to you and the daily treatment only lasts a few minutes. G coped really well with the 6 weeks of oral chemo/radiotherapy with minimal side effects. The only side effect that impacted him was fatigue and that hit around week 4 and lasted for about a month after the treatment ended. He was up and dressed every day throughout though and exercised as much as he could, although he did need the odd afternoon nap during those few weeks. 

Regardless of where you are on this journey, its your journey and you are in control of it. If you start the treatment and decide its really not for you then no one can force you to continue. G completed the 6 weeks but after that he declined all further offers of chemo. I had to respect that decision as it was his to make. Have you spoken to your husband and sister about how you are feeling? You don't say how old your children are so but they may surprise you with their resilience and strength here.

Have you been offered any counselling by your medical team? From what you are saying, you might benefit from talking to someone about how you are feeling. This is also something that MacMillan could potentially support with. There's also the MacMillan Helpline ( the number's below) who could offer some support too.

Another coping technique I used and still do use is journaling. Write down exactly how you are feeling and what is scaring you. No one other than you need ever read anything that you write down but you might well find that seeing it all down in black and white takes some of the fear out of it all. Just a thought.

This is a safe and supportive space so please reach out here anytime. There's always someone around to listen who understands, someone to hold your hand and to offer a virtual hug when its needed. You're not alone. We've got you.

For now though I'm sending you a huge virtual hug and lots of strength. 

love n hugs

Wee Me xxx