We Talk Brain Tumours

Apparently, asking Ali to brush her teeth after dinner tonight was "so unfair".

Pete u r such a bully lol keep strong xx i was told last night after being married for 31 years what a complete useless wife I was !!!! broke my heart xx

Ah shame.  I do hope it was just in jest.

Ali also told me today that she prefers food more than me.  Those darned steriods!!

Hi...hope it's ok for me to tag along!....I have a 21 year old son with a brain tumour....He was diagnosed last year with 3 tumours, and treated with radio therapy....The 2 smaller tumours were successfully treated, but the larger tumour only shrunk by 50%....His oncologist how ever wasn't too worried, and assured me that this tumour would carry on shrinking....6 weeks or so later, Nathan started to act very strangely.....MRI showed the tumour had grown, and was actually a mixture of 2 tumours, hence it not reacting to the radio therapy....He is now on session 3 of 4 (hopefully) of BEP.....The tumour is shrinking (yay!), but he also has cysts which need removing....His tumour is a teratoma....Does anybody else have this type of tumour?....

I have been reading this forum, and eventually plucked up the courage to post....I hope you don't mind me joining

Dawn xx 

Hi dawn, sorry you have had to join our train.  Sorry don t have any info but just wanted to say you will find lots of support on here. Julie xx

Hi pete was totally not in jest but alan did realise what he had said to a certain extent but it still sticks and is heartbreaking but only way you can deal with it is to take it as a joke.    Alan is being particulary not himself shouting at young boys at our granddaughters sports day being very loud and racist which he is totally not, hearing my daughter saying she is so embarrassed by her dad but understands it but obviously other s dont.  Large glass of virtual vino for us xx

So sorry Dawn to hear about your son.Im afraid i know nothingabout this type of tumour.If no one here can help look it up on the internet.The people here are lovely for support though.I hope he doesnt have to have too much treatment. xxx

Thanks for your replies Julie and Janique....I have "googled" his tumour, and scared myself!.....I am too scared to ask the oncologist what Nathan's prognosis will be....He did tell me (when Nathan was re-admitted), that Nathan could still lose his life.....Whilst I have known this from the outset, it is still hard to hear....Nathan is my only child, and children are supposed to out live parents....It has just been a whirl wind of treatments since last October, and not once has he complained......where he gets his strength and determination from just amazes me.....He is having stem cells put back tomorrow.....Have you ever had that, or known anybody to have it?.....OMG, the smell.....lol....He will smell like really strong sweet corn for 2 days!!!!.....Thanks again for taking the time to reply to me, it's really appreciated as I have no one else to talk to xx

Hi everyone - hello Dawn - sorry to hear about your son - sweetcorn smell? How strange that stem cells smell of sweet corn - I haven't known anyone have that but hope it all goes well tomorrow.

Thanks everyone tfor your kind replies to me asking whether my hubby will get back to normal. Taken me a while to read and digest and accept that probably he won't. We saw the consultant again today who confirmed that at best he will just hold where he is but did agree he has got a little worse and so had brought the radio and chem start dates forward to next Wednesday.

However we took a walk this afternoon for about an hour (as we have most days since he got out of hospital) only this evening he has taken a turn for the worse - in a lot of pain and barely talking. I have had Thames doc prescribe a strong painkiller and he has eventually got to sleep. Much tears from me and the children and he kept blaming me for 'pushing' him on the walk. I really didn't - I try to keep it very slow and easy. It just hurts so much. Am not sure if this was another seizure although he is on Kepra to stop seizures.

Hoping he will feel OK again tomorrow. We are supposed to be going to Henley to watch our eldest son row - have been really looking forward to it but this is not looking likely.

Will be devastated if this is another jump to a much worse state. So tired but not sure can sleep.

I hate this disease!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Wendy XXX

Good morning everyone,

Hi Dawn, am so sorry to hear about your son and again, I know nothing of this as am relatively new to this train myself.  You do learn quickly though and it is all very comforting on here.  There is always someone here with an answer.

Have taken all onboard about things not ever being normal again, whatever normal is, but does debulking bring about any normality?  Mum had debulking 10 days ago and has now been home from the hospital for a week and is now doing amazing, weakness in left side and sight hasn't improved much but all in all, this is better than a week ago but I guess what I am asking is, is this is, is this the best it will ever be therefore do we need to grab it and hit the 'wish list' quickly?  A few people I know of through other people have wished that the had never had radio but again I still don't know why?  Can anyone help?

Wendy I hope you get to and enjoy Henley, be lovely in this weather!

Love to all xx