We Talk Brain Tumours

Thankyou all for your kind posts.

Debs, don't think that I have ever got around to telling you how inspirational I think you are x Even at my lowest ebb your posts bring a smile to my face.  I spoke to counsellor at the hospice today and she is going to speak with our daughter this week. I don't think that it's good for her seeing her dad as he is now and he would hate to think that she was.  Hopefully by speaking to someone neutral she will feel that she has permission to stop whilst she is still able to remember him as he was.

Naomi, my thoughts are with you and your family, your dad is certainly a fighter, just like G who is also still managing to perform bodily functions which they had predicted would stop at least a week ago!

Catg the words you used to your children must have given them so much strength and it's true, after this they will be able to deal with anything and I will borrow them for our daughter, Thankyou x

Elaine, so sorry Dave is still suffering with seizures. We eventually switched to Leviteracitam (kappra) and thankfully this worked.  Stay strong x

G seems to be coming a permanent fixture at the hospice, no sign now of him being moved thank god. Everyone there is marvellous and I am so grateful to them for having us.

A peaceful night wished to you all xx. Ange x

Sworthy, sorry think our posts must have crossed.  Hopefully it is just a 'blip' day with your mum. Think it is so difficult even for the pros to say whether the tumour is progressing. When G began to go downhill scans did not really show a lot and they just said that there looked to be some activity.  Symptoms to me, now, do seem to indicate progression but also G was like that when infections set in so maybe get your mum checked out because her low immune system has allowed her to develop an infection which can be treated.

Ange x

Well its good to see that most of us have made our way back to the train, I still think it will be almost impossible for newbies to find us which is really sad, I know it took months of reading and watching before I found the strength to join, if the train had suddenly moved to a different station I think I would have given up so I feel incredibly grateful that I got support when i needed it most.

Ange, I cannot begin to imagine how you are coping, your daughter is going through so much, her emotions must be in absolute termoil, its sad that you have to wait until next week for her to see a councellor - why is everything tomorrow/next week?

Sworthy - sorry to hear about your mum.  Try not to read something into everything that happens, if mum is tired take it for that and let her sleep.  Paul was alert and communicationg (he lost speech over 12 motnhs before he died) until hours before he died, his scan taken 5 days before he died showed no progression from the one taken 8 months previously.  The staff at the hospice thought he was dying 2 months before he did and we were also told at Christmas (7 months before he died) to get my son back from university early as dad was not going to last many more days.  I know its hard but try to enjoy the moments when she is awake and can respond, you will know when she is nearing the end.

Naomi- thinking of you and your family

Love to all Joanna xxx

Seem to be getting email alerts again..so maybe we are back on track.

So true what you say Joanna....I spent weeks thinking "this is it" and it is only when you do reach the final stages that you realise there is no mistaking the signs. It is an unpredictable disease even to the last moment. The Hospice doctor told us that some patients go down a steep cliff while others go down in stages. There is just no knowing .....

Dear Debs Ann Martyn...This train would be derailed without the experience and knowledge that you bring with your posts. Sometimes it is the voice of reason in the wee small hours that bring us back to sanity..and knowing that there are others who have been there before and have and are still surviving. We all come on here full of fear, rushing around trying to find answers and ranting against the medical profession who appear to be doing everything to destroy our lives.....and all of you give support  without taking the hope away..

Since I came onto MacMillan , many names have come and gone and it is so easy to see why ..but I still remember my petrified self, posting for the first time and the lifeline that all of you on here gave me. There are so many others out there and always will be. Sometimes they have no one else to tell of their fears. We cant let stupid technology deprive them of the support and advice that all of you bring.

Pete and Martyn....you are very quiet. I hope that all is well with you both.

Love to everyone.

cathi x

Kerry, thank you for your kind comments , never thought of myself as inspirational but am glad to think that I can raise a smile in a weary day or help someone new with my own experiences.  I truly hope the neutral counsellor will help your daughter.  I think the best image of her Dad will be the one she knew before the b@st@ard brain tumour came along to wreck another family.

Still can't get the favourites button to work, but the site is much faster now and I will continue to check in on my fellow passengers, I would feel a little lost without you all.

Hope everyone is having the best day possible considering the circumstances.

Love & Strength to all who want or need it.

Got an email to say my post was approved and has been posted wohooooooo that makes me just a lil rebel then ;)

Just wrote a big long post but had disguised a  rude word using characters and have found that its been sent for moderation before its posted.

Seems I will be getting a slapped wrist, oh what a rebel am I !!!!!!!

Love & Strength to all who want or need it.

debs can t believe this what an insult getting very angry that we cannot express ourselves yet for months and months being on this site, in the chat room scammers came in using all types of bad language upsetting people !!!! cannot really understand this so here is my rebellion this is absolute testicles Julie xx

Debs! After all you have been through you should be able to say whatever  you like.

JM7...I agree it is a load of bollocks and there will be many many worse words if they begin to censor us on top of everything else. 

Cx

Debs - your posts do make me laugh!

Joanne & Ange, I understand about not trying to guess or read too much into symptoms but well, dad is not coping with mum so my sister has her at her house, she has 3 children but has given up working. I work four days now and have two children, we have to be with her 24/7 and my dad is not even helping us very well with that so, we and another sister take it in turns to sleepover with mum, I go before work and after and sleep over and even though this commitment and the lack of sleep is hard, we are ready to carry on doing this for mum.  What we don't want to do is shove her in the hospice, as our doctor has recommended, and her be there for weeks and weeks feeling like she has been sent there to die.  She knows she can only stay at my sisters until she gets really ill due to the impact on the children so if we put her in the hospice too early, she could end up being there quite a while.  I know every tumour and patient are different and I am always wanting to know whats what but we just don't want to get this so wrong for her.

Naomi - thinking of you x