We Talk Brain Tumours

Thinking of you Roses.

Hugs to everyone else here. I have been reading x

Took my girls to my Mum and Dads after school today to let them see the girls in their uniforms. I don't want to be here on this site, wish I'd never heard of GBM4-I want my dad to be here for us as he always has been. I want him to see my girls flourish and grow, to see their sucesses.

 Life is so unfair :(

Roses, I am so sorry to read of your loss.

xxxx

Tasha - I agree with everything you said.xxx

Went to see my dad in the Hospice tonight. It was nice to spend time with him away from my mum (in the nicest possible way) as she tends to speak for him - she doesn't do it in a mean way, if that makes sense.

I fed him his pudding and wiped his mouth afterwards. I was dreading feeding him but I don't know why as it felt very natural and loving. I asked him if he understood what I was saying. Simple yes or no answers are all he is really capable of now as he has virtually no speech. He nodded "yes". I asked him if he knew what he wanted to say in his head and again, he nodded "yes". Then I asked him if he just couldn't locate the right word when answering and he said "yes" again. For the first time in weeks, I really listened to him. I had my eldest son with me and dad managed to say that he preferred for the grandchildren not to see him as he is now as it is too painful for him and then. When we left, he tried to shake my son's hand and he said "goodbye son, be good". Both my son and I knew it was dad saying goodbye to him and I will respect that. My son almost collapsed when he got to the car. He is 15 1/2 years old and almost grew up there and then.

Tomorrow he will have a bath and a shave and they will try and double his steroids again. He clenches his lips and refuses to swallow them and it is not part of the Hospice approach to administer them any other way. He is taking back some control and good for him.

He is mainly in bed there and he has not been given his walking frame as he simply mustn't try and stand any more as his legs have no strength in them whatsoever.

The stupid thing is, I am going to see him again tomorrow and I know he will be worse than he was today and yet it will still be a massive shock to me. I wish that would stop happening as each nasty new symptom he has takes my breath away with pain.

Keep going everyone.

Lots of love to all.

Naomi.xx

Dear Naomi.  I'm sorry that you're having to go through this, but I'm glad to see that you're spending some good time with your father.  I've been feeding Ali for the past few weeks and it really is a loving thing to be able to do.  I also get communication largely through nods and shakes of the head, although half the time she won't respond at all.

Also sorry to hear your son is going through this, but like you, he's doing the right thing as painful as it is.

Ali had a fairly good day yesterday, prompted by my mother being here for a visit.  Ali made the effort to want to get out of bed and be put on the sofa and stayed awake for a while.  It really took it out of her as she's been asleep for much of today.

Thank you Pete. As I was feeding dad (the spoon was too big, he can only take little bites so I'm taking a teaspoon in with me tomorrow) I was struck by the parallels with looking after my baby too. I had just spoon fed him his dinner then moved straight on to dad's. It seems that for every faculty dad loses, my baby son gains one. ......

Ali is a strong woman to muster up that much effort, I trust your mum was suitably impressed? It will probably take Ali a while to recoup some strength after that but fingers crossed there are more days ahead like that in store for you both.

JM7 - I dont understand why your GP sent him to A  & E - what treatmet did he expect them to provide? Sorry, crazy question but so irritating as he knows what will be done and the result is frustration and anger for both of you.  Speak to your Mac nurse or DN for the DVT clinic number or phone the hospital switch board and ask them to put you through.  If he is on anti coagulants it is unlikey they can provide further treatment for a DVT and would only offer different treatment if he becomes breathless.  I hope he is feeling much better today and that you have both got over the initial shock. xx

Naomi, you sound so much calmer today, I hope the hospice is offering the support you need, your comment made me sob, your son is so grown up and yet so young, life an be so cruel

wishing you all a peaceful evening 

Joanna xx

Hello, guys and gals, I posted to someone last night who has begun a thread called 'Help!!!', she is Jax W, I pointed her towards the brain cancer groups but apart from posting she hasn't really had any contact. 

I don't know anything about brain cancers, but her partner has secondary in brain from a sinus primary which was treated successfully. 

Could she be asked to join you as this seems a busy and supportive thread? Helen xxx

Yes Helen, of course we're all here to help and support each other and any newcomers that come along.

Your story sounds very similar to mine Deli

My dad 64 diagnosed first few weeks of July (a few weeks after my wedding) with GMB4. Last sunday he was moved to a Hospice for what we know will be his last few weeks. He's handled the whole thing with such dignity never once complaining.

Marie Curie and Prospect Hospice have been beyond brilliant in their help and support. Not so the NHS. "your in the system" is not what you want to hear!!

After the intial diagnosis of 12 moths, he went rapidly downhill about 4 weeks ago and diagnosis shifted to 6-8 weeks, doctor in hospice now thinks 2 weeks.

In some ways as horrible as it sounds I'm glad its taken him so quickly if nothing else for my mums sanity.  My heart goes out to all of you who have had to live with this for a lot longer than I have.

Chris

Joanna - thank you, yes I do feel calmer. I also feel like I've been hit by a truck. Even my fingers ache! No idea why as I'm not unwell, just a reaction to everything I suppose.

Chris - gosh, yes. Shockiingly similar and equally as sad. I agree with you - it is a blessed relief your dad's illness looks as though it is going to be a short one, for his sake anyway.

I went to see dad today but could only stay for 40 minutes as I had my baby with me. "All children are welcome" is the policy at the Hospice. Well, after Herbie's visit today that may well be revised. I am never again taking a 13 mth old BOY to a hospice again. You name it, he found it/touched it/picked it up/broke it ......

Anyway, I digress. Dad seemed more confused than ever today despite his steroids being doubled. He wouldn't let me or the staff feed him and he ate a pitiful amount (he can hardly see, he can't get the food on the spoon and has a cat in hell's chance of that spoon making it to his mouth). He is quite badly constipated and today he was given an enema. All well and good but he doesn't get much notice he needs to "go" now (for both) so when I got there he was sat on an absorbent pad as he had had several accidents. Poor old boy. I nipped to the Supermarket and treated him to £30  of new undies and pj's but refused to put them on. Oh well, you can lead a horse to water ....

Dad is now three weeks in to his four week diagnosis and my gut feeling he isn't going anywhere soon. I was looking around the hospice today at the other patients and they all seem so much sicker than him. The nurse said it's because physical pain is treated with morphine which almost makes people comatose so, in reality, those patients may be no more poorly than dad. Pretty much the only words he can say now are "kill me" and he repeats them a lot.

Onwards and upwards. I'll viisit again tomorrow WITHOUT taking the baby with me!

Love to all.

Naomi.xx