We Talk Brain Tumours

We're also a bit like buses,nothing for ages then 3 come along at once!!

Yes Mandy, so so sad for Peabs, I have posted my condolence on the Parents thread and am thinking of the family constantly.  Sending love and strength to help them through this terrible time.

And strength to all that need it xxx 

Hi Angie,

I have a  AO3 (anaplastic oligodendroglioma grade III) in my right temporal lobe (well I did, I had a total gross resection in Jan 09).  Feel free to add me as a friend, I know we have our beasts (mine is called Buttercup) on opposites sides but we may share some things in common.

I was given a timescale, which I will forever regret, as it ticks VERY LOUDLY in my head.  However, its just a statistic and a statistic I am not!

Not been on here much, eldest was doing GCSE's (stressy much) and then we had the prom and sixth form inductions days - mostly importantly my birthday lol and then yesterday my baby girl turned 12!

I don't post too often on here but you will find heaps of advice, info and support along the way.  Feel free to private message me - at least I get an email to alert me and can respond quicker then

Thankyou to all that replied to my post yesterday.

It is good to know that there are people who know what is going on in my head.

Family try very hard but they just don't really know.

All the info that you have all provided me with has been so helpful and will help me along the way I know.  Living life to the full has been my no. 1 priority so far, don't know whether that will remain so once treatment kicks in, but I will try to keep it up there, as it seems all on here are doing. So I will be strong alongside you all.

Thanks

Angie

xx

Hi Angie You've found the right place for help & support. Sorry you have had reason to join but welcome. As others before me have said, it is so very difficult to give any timescales for the reasons they have mentioned so try & concentrate on enjoying each day as much as possible & make happy memories for both you, your family & friends. That was our philosophy & looking back we have acheived a lot despite the difficulties of living with a brain tumour. Remember MANY, MANY people go way past the timescales they may have been given which perhaps shows that predicting life expectancy for this type of illness is difficult as everyone is different. You seem to have a positive attitude which I beleive helps. Hope you have a great party by the way. Is it for a special birthday or anniversary or just a good excuse for a get together? 

On the subject of anniversaries, 2 years today was when we entered the BT world.  We were told (or I read somewhere can't remember which now) that 1 in 5 people with a Grade 4 survive beyond 2 yrs. Well Pete always has been one to beat the odds so I shouldn't be too surprised!!! I wish though that I could report that he was doing well at the moment but I can't. He went back into the Hospice 10 days ago as our GP & Specialist Nurse thought he was coming to the end of his life. Once admitted, he then pulled back again and has stabalised but as the Hospice is in the midst of a refurbishment programme he needs to be discharged. I have been visiting local nursing homes as it cannot be guaranteed that Pete could be re-admitted to the Hospice if he deteriorates once more. We agreed that he should not die at home as both our girls have stated that they would not feel comfortable in the house afterwards if this happened.  Pete has reached the point where he is not aware of his surroundings or necessarily who we are but nevertheless I want somewhere nice and pleasant for him where he will be comfortable and receive quality care. I never would have thought I would be researching this for my 58 year old husband but here I am, doing just that and the saddest part of this all is that I cannot discuss such an important decision with him. I miss the old Pete so very,very much.

Sad times again for many, especially Peabs.

Take care everyone & keep strong. Special thoughts for Martyn & Doreen.

Sue xxxx  

Hi Sue

Thanks for your message.  Birthday for me is 45, for Dad, 65th, so a milestone for both of us.  Hoping for a great day with all family.

So sorry to hear about Pete and the difficulties you are going through, wish I could help, sorry.  I hope you find somewhere that you feel is right for you and him.

Thanks again and take care

Angie xxxxx

Hi Sue,

I do admire your strength and resolve, and you never fail with your concern for others, thank you.   It certainly is an emotional roller coaster isn't it?  I really thought both of us would be at the end of the 'journey' by now. As I've said before, Pete and Doreen make formidable opponents don't they?  Our very best wishes to you both.

Martyn XXXX

Sue, sending you a big hug. It must be unbearable for you to see Pete like this. He has beaten so many odds as you say.
That's a terrible situation though with the hospice. I wish I could think of something but I'm sure you have investigated everything.
I wish you strength for the coming weeks and months.
CHxx

Sue, lovely to hear from you, though such a sad post with regards Petes situation.  As you know one our biggest problems that made BT so hard for us was my P's inability to communicate.  But I want to say this to you - I, like you, had to make many decisions on P's behalf.  This made things so much harder as I only tried to do the best by P but I didn't always know if P understood 100% if at all.  However, I am now left with some regrets.  I am burdened by them and I don't want you to have the same - maybe you won't but still - just that when you make these decisions ensure you sit and tell Pete no matter what.  I did throughout - however, when it came to the unexpected decision of putting P on the Pathway I didn't actually sit and ask him, nor tell him.  Now I regret not giving him the chance to state how he felt - although I know at this stage the world wasn't making sense I still feel we (ie me) should have sat and attempted to convey the decisions being made (I do acknowledge that I was trapped inside a bubble and life didn't seem real at this time - the Mac nurses were useless and have since apologised for their inadequacy and also the hospital has apologised for their lack of support).  This hard for me to write but I would hate to think I hadn't enabled others to live without this one huge regret..

Take care Sue, I think of you often. xx

Hello dear friends old and new. Angie, sorry that circumstances have brought you here but I hope, no I am sure, you will find plenty of help, support, good advice and loyal friendship here.

Suetoy, my heart goes out to you, Pete and your family at this difficult time. Pete's brave battle has mirrored my Paul's in so many respects and so often when I read your posts, I could almost be reading my own thoughts. Keep strong, Sue and have faith that you are making the decisions that are right for you, P and your family.

Mandy, CH, Martyn hello to you both from your old mucker in Burton. Sorry I haven't had much contact with anyone lately but we are still here and still muddling along quite well.

Love to all,

Sue

xxxxxxxxxxx

Hi all,
As you are all very well aware, the role of carer for our loved ones on this terrible journey is an extremely lonely and frustrating experience.  I have in the main received wonderful support over the past few years on this thread and hope I have managed to reciprocate even to a small degree?   However recently it has become increasingly obvious to me and several others that on occasions I am being blatantly ‘cold shouldered’ by a very tiny minority.  This thread has been and still is my main form of contact with the ‘outside world’.  I honestly don’t know what I’ve done or said to cause this, but it is really getting to me and we have enough going on without that.  I will try not to post again, but would very much like to stay in contact with anyone who wishes by personal message.
Drama Queen? maybe,  foolish, over sensitive old fool? probably.
I am prepared to deal with all the hassle within our home, but when it comes from outside,  forget it.
My very best wishes to you  ALL.
Martyn.

Hi Sue, love to you and Paul. XXXX