We Talk Brain Tumours

Hello

What has happened to everyone? After a flurry of posts everyone is quiet. Not off on exotic holidays or out partying I bet. Thought my husband was going to be discharged this weekend but hospital have now said he has to wait for a full care package to be put into place including overnight sits...not sure if I am ready for this, want to do it all myself, but my daughter tells me I need to be a wife again not a carer but how do you do that when my big strong fun loving husband has changed so much. Sorry, bad day, think I will take dog for a long walk.. Lots love]Opal xx

Hi,

Thank you Martyn and Cathi for lifting up my spirit this morning. I was diagnosed 8 weeks ago when I was 26, turned 27 coulple of weeks ago. I have Anaplastic Oligodenglioma Grade 3. Still a shock to the system to have a grade 3 cancer at 27.

First week i couldn't help but search for survivors online who survived more than 5 years, couldn't find any. stopped searching as I relised it wasn't healthy. Reality is Grade 3 cancer cells spread and grow rapidly and is a matter of time till it spreads and damages the rest of the brain. Nothing i'm taking is a cure, and is harmful to my body but my body is fighting all the drugs.

I've done 18 out of 30 Radiotherapy sessions. Second Chemotherapy cycle starts next week. Hate the Chemo drugs as I know it is literally poison going in to the body. My body is doing well, won't know how the tumour is till few months after Radiotherapy has finished as they need to give it time for the dead cells to clear. My body is reacting well to the drugs, I take every drug they give me and see it as a challenge for my body. Its hard to stay positive all the time as you know but I try and peoples kind words help alot.  I'm not sitting at home waiting to die.

I'm alive, i'm breathing, i'm positive, i'm a fighting it. Sometimes it can be difficult cause i see the numbers 3-5 years in my head. Can't just ignore what the nurosurgeon consultant said and my own research can get you down sometime.

I'm thinking maybe I should stop all treatment and enjoy the rest of my days, atleast i'll have my body back. And their is no cure so whats the point of all the pills and side effects, I'm just thinking about it but I think that will reduce my days more. NHS told me all they can do is try to slow down the growth, it is unstoppable. Only good news i'm coming off my steriods today after 8 weeks, it gives me severe insomnia, miss sleeping but hopefully I will now, It will grow again even if Radio can stop it for a while just a matter of when not if. Its scary to think I might not even make 30. Thank you for your kind words, especially to a stranger.

Bodrul

Bodrul

Statistics are only statistics and can drive you mad (my 17 year old had a grade 3 tumour) it grew back very rapidly despite radiotherapy and temozolomide -read my profile- BUT she was diagnosed Aug 2008 -shes had three lots of surgery including gliadle wafers and shes still here and at present no growth -Ive done a lot of research too and NO brain tumour is good news but each individual responds differently .  I know there is someone who sometimes comes on MAC site who has the same as you and he was diagnosed 08 also and hes still doing well. Keep positive as I believe it does help xx Dianne J

Hi again Bodrul,

I must make it clear right from the start that my opinions are from my own experience, the views of others here and most importantly those of our consultant neurosurgeon. I have no medical qualifications.

I am quite surprised that your team can tell your tumour began 2 years ago, that's pretty definite. Ours said they couldn't tell whether it was 2 or 20 years, although that isn't of course of great importance now. My wife also underwent R/T x 30, but no chemotherapy. They said they would keep that in reserve as a back up, ( she still hasn't had it and most probably won't now). The R/T definitely halted the progression of her tumour for several years. Please also be aware that the affects of the R/T can be felt for quite some time after completion of the course, it can actually mirror symptoms of tumour growth.  You seem a very positive, intelligent young man and I'm sure you will give it your all for a very long time to come.

Best wishes, Martyn

Hi,

Thanks Dianne J,

I'm really sorry to hear about your daughter. and i thought i was young.  i know statics aren't accurate, they never are. I just can't completely ignore what a highly trained neurosurgeon is saying and live in denial. I am positive and I'm fighting it everyday, probably more for my mum than me, I don't want her to go through the pain of losing a son. But i do understand what your saying, every individual is different and I live in hope. i hope your daughter gets better and hope your ok, can't imagine how it is for a mother. Thank you for your support, means alot.

Bodrul

Hi Opal,

Knackered.

You know....my very good friend said exactly that to me! " you have to try to be a wife..not a carer" Is this a phrase from Heat magazine or some other helpful article on how to care for your sick husband? I was hurt and I wasnt sure why. I later realised that people just dont have a clue....you think they do and they think they do but they dont. You have to be in it day and night..night and day. Being a carer does not stop us loving our partners......maybe they think the sexy lingerie and popping  a bottle of champagne is the answer?????

What a grouch I am today! You can tell I need more sleep. Cant face a dog walk...just want to sit down in front t.v in a daze.

Tomorrow is another day. Actually ..thats not true...a day can swing from good to bad to good again...heres hoping

cathi

Thank you for the support, its a good sign your wife doesn't need Chemo aswell. Radio and Chemo together are usually used for high grade fast growing agressive tumours, no chemo is a good sign, hope she gets better and hope your ok too, sometimes people don't realise it is difficult for loved ones too.

Bodrul

Please dont let the Medics get you down Bodrul....it is facts and figures and data and statistics. They leave no room for the unexpected and the unexplained. After all...its not very scientific to say that something is incurable....because one day it will be...and why cant that one day be yours? You are young you have strength and if you read the positive posts on this site you will see that the statistics are not always right. I made a point at the beginning of not doing a lot of internet searching...although I am stronger and more selective now so I do. Focus on tomorrow....set small goals.

cathi 

Thanks Cathi,

Your an inspiration. I haven't used the forums before today but their are some really nice and kind people on here. I try to be as positive as I can an still try and have a laugh when I can. No one can keep me down.

Bodrul

Your right people don't have a clue, I hate it when they act like they know what you're going through but can't possibly. It going to be a good day. i always wanted to be a fireman and help people but i guess i never got round to it, don't have the energy for it now. I signed up for some volunteer work for child line yesterday for the NSPCC, hope that goes through, want to be a Child Line Advisor, thought i'd be good at it. Have a good day and stay positive, feels good to breath in the fresh air.

Bodrul