We Talk Brain Tumours

Goodness what a lot of lovely posts.

Suetoy, it's just so bloody hard. It's why we all come back here I think because people here understand. xx

Becca, lovely to hear from you. Ohhh come and give me a hug girl!!!!!
8 months, it doesn't seem real but how lovely your Dad fire colleagues will donate to BT. We just need a b. cure fast eh?

Mandy it must be so true what you said about the hospice staff not being able to help at the end. It must be hard for them and I bet it helps them to see you now and again too because in their way they are also grieving having known Peter so well and so long.

I suppose I am doing OKish. It's about 11 weeks since W died. At first with all the activity and then shortly afterwards it seemed to go OK but the last about 3 weeks are different again and I'm feeling the emptiness more sharply without all the socially engineered distractions.

The social systems here are grinding on and trying to coax me into society again. Having lost my job last autumn I will have to start applying for jobs soon. Little things that I would have done before bt with no problems seem like a huge hill to climb now.

Where is that train driver? Asleep in his cabin with the paper and a bottle of Bell's again I wager! We passengers have missed you quite long enough due to your technical difficulties!

I  can't believe that you have been caring for Doreen for, is it over 7 years now? I think about that sometimes and find it hard to imagine how you manage.(And Lozzy and Mandy who have also been caring for their loved ones with bts for many years.)
I know very, very well that we all wish our loved ones will live as long and as well as possible. Still, caring over a long time is also an amazing thing to do. I know you do it gladly but I still admire you for doing it. xx

Sending love to all of us going through difficult times. 
Miggins XX

Good morning all,

I read recent posts last night just before going to bed and was so affected by Suetoy’s post that I feel the need to reply and to put into words some of the things that often go unsaid. I hope my candour doesn’t offend or upset anyone.

Suetoy, I felt so sad reading your post and Mandy’s reponse because so much of what you said struck chords with me…. I don’t mind admitting that for me, the loss of the physical side of our marriage has been very difficult and the cause of much sadness. Paul and I have only been together 6 years and when we first met, to put it bluntly I fancied the a**e off him, a feeling that seemed to be mutual. Now, just 6 years later thanks to bloody BT, all of that has gone and I damned well miss it and don’t mind admitting that. It’s not the actual sex (there I’ve said it) it’s the normal, day to day affection and intimacy that generally happens between 2 happy, healthy, loving people. Going for a walk holding hands, snuggling up together on the sofa, snogging in the back row of the pictures, a slow dance… I miss all of that so much. We can’t hold hands because Paul’s balance is getting worse and he needs his hands free to help control his balance. We don’t snuggle up on the sofa because he spends all his waking hours watching TV and I have had to get used to sitting in silence while he watches episodes of Morse or Silent Witness over and over again. We don't go out very much because he doesn't like crowds and would rather be at home and can be quite unfriendly towards other people now.

I went through a spell last year of having to fight back tears every time a particular advert came on the TV. I think it was for Mastercard, the advert that lists the prices of various things and there was always one that was stated to be “priceless.” The one that got to me was the one which featured a couple on a romantic break away and it said something like “not coming out of your hotel room for 24 hours-priceless.” It really brought home to me what we have lost. Recently, I have seen the advertising campaign run by Macmillan saying “sex, a prickly issue.” I haven’t looked at it in any detail as I assume it is aimed at people who perhaps still want to make love but are having physical difficulties caused by cancer. That must be bad enough but I feel, based on my own experience, that it is nowhere as bad as what people like you, Sue, and I and all the other partners/spouses/lovers of people who have been so cruelly affected by these tumours have to accept as an everyday part of life. Despite what I might have implied above, I’m no nymphomaniac and I really don’t mind the enforced celibacy but what I do mind, no I bloody hate, is seeing my gorgeous, hunky, sexy husband of only 5 years slowly turn into an unresponsive, withdrawn, moody and rather cold man who through no fault of his own can’t read, can’t dance, can’t walk far and can’t really be bothered even to have much in the way of conversation any more.

The only comfort we can try to take from this situation is the oft repeated mantra that we know it isn’t their fault. It’s the BT that does this, that takes away so much of the man we loved and changes him into someone very different. Like so many others affected by BT, my Paul has undergone major personality and behavioural changes. He’s not the man I fell in love with 6 years ago and there have been many times in the last 18 months when I have found it very very difficult to learn to love that different person. What keeps me going is the knowledge that he can’t help it and that even though he might not put it into words, I know he still loves me and he needs me now more than ever.

Keep strong, Sue. I do know how you feel as will so many others here.

Love to all,

xxxxxxxxx

Hello again,

CH/Mandy  - Massive virtual hug happily winging its way to you.  Both yourself and Mandy put in to words exactly how i know my mum feels, the lack of motivation and the disregard for things that once came effortlessly... no longer hold the same meaning anymore... how can they.  My loss is different and painful - but her  loss is greater thats the only way i can sum it up.

Mandy - im sure in time your elder daughter will gradually love nothing better than coming home :)  i know i will xxx

Sue B - Sending you a massive big hug too, you are truely remarkable after everything that has been thrown at you these past couple of years x x x

Hope everyone on the train is as well as possible.

Love always

B xx

Hi Becca

I understand completely your quote regarding going back home.  You cant help but feel like a guilty escapee as a child of a BT sufferer when you go home.  Our time at home with our son allowed us to switch off from the awfulness of it all and after poppa died it gave us somewhere to run to. 

We did struggle however with our 5 year old son who is very close to his grandma and got very upset if we tried to leave her alone at home - he would cry his eyes out shouting that she had no-one to cuddle and that he had to do it now.  Ha and they say kids dont understand death!

I must say being a chief bridesmaid all those times this year - I am guessing you have quite a selection of dresses - any dodgy ones?

CH - as weird as it will be I would suppose that going to a new job where no-one knows you and the trauma you have suffered could offer some sort of relief.  Sort of like having a place to escape to that isnt affected by what you have gone through.  Must seem nothing short of a mountain climb at the moment though - good luck with whatever you decide to do.

My MIL is doing okay still, she just had all new carpets and lounge furniture delivered - I dont think she has every had anything brand new in her life.  We keep having to force her to spend the income she gets from the various investments my FIL left behind. Of course most of the time she tries to spend it on us so we have to be careful not to grumble about money and bills in front of her!

I still havent broached the subject of pictures of my FIL with her yet, there are none in her house and I have lots but I feel it would be rude to just foist them upon her.  Not sure what to do about that.  We had my MIl and FIL sister over for Christmas dinner and she asked for copies of every picture we had.  I had hoped she might mention it then but no.

Am still annoyed at my brothers and sisters in law who have once again this year planned family holidays that do not and cannot include my MIL.  One family is going sailing in Greece and the other has planned to go go skiing.  She has been with us for the last couple of years and last year for the first time on her own without my FIL.  We have booked our holiday and have not been able to tell her.  It sounds mean but I dont see why it is down to us to each year.  If we make a habit of it then it will always be our responsibility?  The other siblings live further away - out of sight out of mind I guess.

Anyway am stretching my lunch hour somewhat - best wishes to all.  Martyn I hope all is well not hearing from you so much these days - keep strong x

Hi Briarwood,

I hope you don’t mind but i have just read your profile and im absolutely appalled and in disbelief at the lack of care and attention that your FIL received - how completely negligent even if the outcome was never to be good.  But i hope you are all getting on as best you can now.

In time it will probably become a whole lot easier to go home, my dad passed away in what was his bedroom as a child..and then became my childhood bedroom.  Not that there is anything to be scared of, but i wish to forget his last few days, when i stay in that room i no longer sleep as everything is still so vivid.  I guess for the moment it is no longer the place that always made me feel safe... i don’t expect to feel this way forever as i did spend 26 wonderfully happy years there - that should count the most.

But i see mum all the time as she also escapes the house and is often with me at weekends.  It is no longer the place that is once was for her either..or any of us i guess.

Ok...rambling again

Love to all

xx

But an interesting topic Becca and Briarwood.
With us there was just the two of us and our dog and our general sociability bumped along the bottom of any graph you care to mention.
So a problem I have had since W died was that there was almost no-one to talk to (apart from some lovely friends xx).
The house has been much more silent and that safe cosy feeling, well I couldn't feel it.
But just maybe it is coming back at times I think. At least on days when I feel at ease and not too anxious, the house feels again like home.

Anxiety is a feeling I have wrestled and with that I haven't found discussed too much in  the books I have read. I think it is a residue of caring; watching whicj becomes second nature doesn't it. And the uncertainty of your place in the world that is an inevitable part of losing your other half I think.

But one thought that has come close to inspiring me is that the lovely house we shared should not descend into being a cold, dusty, unloved house but stay as we kept it - ok dusty! - but warm, friendly and cosy. I haven't the energy yet to do much but feel sure it will come.

And also rambling on!
MIggins xx

PS Sue an admirable, honest and heartfelt post. xx
It wasn't my experience and for that I feel very lucky. But I think it often is and it is very hard. Another aspect of extra difficulty with bts.

Hi everyone

Thanks everso Y&Y, Becca, Mandy, Miggins & Susan 206 for your messages of support. As Miggins said in her post that's why we use this site as you always know that there will be someone who understands EXACTLY. Susan especially for me hit the nail on the head with her candid account of her life with Paul........so similar except I have to sit through News 24 on for the majority of the day rather than old episodes of Silent Witness or Morse. Not certain which is worse!Thankfully, Mandy, Pete has never said he doesn't love our two children - that must have been so very hard for you & your family to take from Peter & even though it wasn't meant it must have made your heart break to hear it said nevertheless. We all of us know that this bloody awful illness causes so much heartache and the mantra of 'It's the BT talking, not the person' is well known by us all. However, as much as you know this, you still have to remind yourself of it at times.

Love to everyone & sending hugs a plenty to all those that need them.

Sue xxxxxxxx

Hi Becca

We where watching CSI last night and the lead character asked 'have you ever been the last person to look in someones eyes before they die?'  I turned round to find my husband dissolved in tears.  Being with his dad when he died is a moment I would never wish upon him but I know it is a moment he will always hold dear however awful it was and is still for him now.  Been a while since I have seen him cry, seems to hit him at the strangest times.  He was getting ready for his hockey match in Chester last week and I noticed he was crying - he had remembered the mad driving his dad had done to get the team there on time the last time they played each other.   Later on he and the lads where all chatting about there near death experience in the mini bus and it was a much happier memory for him.  The Yin and Yang of memories I suppose?

Just wanted to come on a have a little moan!! I'm finding things really hard this week. My dad is having problems with incontinence and constipation and it's getting quite trying. I have washed his trousers and sheets I don't know how many times and feel like I am constantly mopping urine off the floor. I've had to get carers in more often this week to wash him as it's all pretty horrible really. The only pads we have have this strange tape system on them which don't last long once he's pulled them down to use the loo once. He doesn't pull them on properly and they just hang off really. The district nurse say they can't get the easier pull up ones and they also can't supply us the square pads that you can put on the bed. All very frustrating. I think hopefully the bowel side of things is sorting itself out but it has been causing him a lot of distress. Dealing with all this and having a very active 18 month to look after/entertain has been getting me down. I really need a break and luckily we are going on holiday in a couple of weeks. I've been up in the middle of the night helping him the last few nights and at 4am on monday he ended up on the bathroom floor which is the first time he's fallen. The hospice nurse has been great and is arranging for him to go into the hospice for 2 weeks. I think this will be really good. It will be an opportunity to get on top of things and see what they can help us with and to be perfectly honest will give me a little break too. 

Right sorry about that, just had to get that off my chest!

Green Tree-sorry you Dad is struggling with incontinence. It really must be such a knock for their dignity and wearing for you. The pads the district nurses supply are not so good for someone mobile. You can get the pull up ones at the chemist but of course at a price. Ask the district nurses if they have any pads (bit like huge sanitary towels). They can slip inside the tape pads you describe and help to soak up a bit more in the right place(hope this makes sense). The district nurses should be able to access the conti sheets to put on the bed. If they are unable to maybe the hospice nurse could give some advice? Hope your holiday gives you some renewed strength. You are doing so well. Is there anyone who could help with your 18 month old maybe another Mum. That would give you more time to spread between caring for your Dad and maybe some ' you ' time. Sending you some strength and a hug. x