What if?

It's completely understandable and natural to ask these questions. I can only say that the research we did around the prognosis if my wife  didn't opt for surgery was pretty bleak, like less than 6 months. I think she would have done well to last that long. GBMs just grow so aggresively that surgery really does make a huge difference as then the radiotherapy has so much less to try and slow down. Apparently there is some evidence that for unknown reasons the tumour comes back even quicker after surgery but on the whole it still makes sense to take the surgery option. I'm so sorry that hers led to complicaitons.

My "what if?" has always been if we'd spotted it sooner. If we'd been able to get an MRI after the first occurence of headache because she soon after had a "cerebral event" which has left her struggling to walk and with cognitive imparirment. But as Dr friends of ours have said no GP would refer for an MRI just from a headache alone after only a few weeks. So I guess we have to just "accept" what happenned though that's easier said than done I know.

Take care of yourself

That’s it isn’t it … how can you possibly get diagnosed early with this awful disease! It just seems like there is no way and by the time someone does get the diagnosis it’s really just too late to do anything about in reality. So unfair

Hi PGB

I hear you. The "what ifs" are natural. It's human nature to over analyse ever last second of this. Sadly, the end result would be the same no matter what choice you had made along the way. These tumours are cruel beyond belief.

Have you thought about talking to someone, a counsellor perhaps, about this? MacMillan can support you there if it's something you want to consider. Just reach out via the helpline number below.

I'm still travelling the GBM4 roller coaster with my husband and its a bit of a bumpy patch just now but I do try to look forwards and not back. We can't change the past.

Sending love and light and hugs

Wee Me xx

Also if tumours do tend to come back sooner after surgery then my wife really did not stand a chance. Because the operation caused a stroke she wasn’t able to start any chemo until 11 weeks after the surgery (due to weakness) so by this point clearly it was just far too late

It's all too sad.

I also read that surgery can also mean tumours return. Surgery apparently removed 100%of my husband's tumour but seeing others comment their tumour was not 100% removed, and they survived extended periods, in the end there isn't much logic.

There are so many factors so it's personal to all.Once you get the diagnosis I don't think you can change your destiny that much, just be there for your partner, be kind and patient to them and yourself. 

I am perplexed that there is no cause identified, apart from possible high radiation which wouldn't be the reason for most. Why does glioblastoma even occur, how could it have been avoided, why does it happen to young people? My husband got it at 64, which is young but has struck many of your partners even younger. 

Hey gang...

It's fine and normal to ask all these questions.  I'm struggling a bit more these last couple of days and I don't really know why things feel a bit worse.  I guess I just have to learn to ride the bumps.

There is no "cause" for most cancers - it is random mutations which are a natural part of biology.  There are things that can make it more likely (e.g. exposure to radiation increases the frequency of mutations) - but nothing that makes it happen.  Especially for GBM where there are no dietary or lifestyle factors that we know of - no causes - nothing to be avoided.  The horror of that is that we are left with all the what-ifs.  A possible up-side is that noone is to blame (though sometimes it would be easier if we had someone to blame). 

I have looked at graphs at various points comparing lifespans for people who had treatment with those who didn't.  None of it is pretty but it is clear that if surgery is available, it is the best option.  But because everyone is different, everyone responds differently. 

We had a really good run with Fi - she responded really well and got another couple of years of reasonable health after her initial treatment.  But that is the rubbish deal we have to make, isn't it?  My family has to be grateful for two years of reasonable health.

We all want to beat ourselves up about decisions we might have made differently, but we all make the best decisions we can with the information we have at the time.  I fear I am sounding like a broken record, but going through this either as an individual or as a carer /. family member requires a huge amount of guts and determination.  Anyone in this community is a hero, in my view.

As others have said... It is important to keep talking if you are struggling.  Counselling might help.  Support groups might help.  Posting on here might help.  Keep asking the questions - keep doing the things that help you to cope day by day.  Don't get impatient with yourself - it takes as long as it takes and you need to be kind to yourself.

Pete