We Talk Brain Tumours

Pam,

I think of you often at the moment and can't begin to imagine how you are feeling for I only know how your children are feeling.

Mother Nature is a wonderful thing in that shock cushions you from the blow for the first few days. The morning after my dad died I took my children to school and in that 20 minutes in the playground I must have laughed, then cried, then laughed about 20 times. Happy memories would make me smile but then the realisation that he wasn't coming back would cause me actual physical pain. You will get your heads around it but be gentle on yourselves. There is no rush and no guidebook for grieving. Get there in your own time and in your own way. You won't fall apart, of that I'm sure. You are a strong woman Pam. You will resume your normal daily activities in time but you will do them with Tony in your heart, not by your side.

Charlie will get there too, he just needs to do it in his own way and you are amazing to be able to respect that and to give him the space to do so, you really are.

I still have meltdowns but they are every 2/3 weeks now rather than every other day and when I think of dad the lovely memories I have of him are at the forefront of my mind rather than the ones of him dying. I never thought that would be the case but it is.

Take care Pam.

With love,

Naomi xx

Dear Pam,

I am so sorry to read of your loss, I too have followed your journey constantly although silently. You have done your very best for your Tony. Wishing you and your family strength and love for the next few weeks.

Take care,

Denise x

Dear Pam,

I'm so sorry to hear of your loss (apologies for my lateness, I've been away and just got back). You did Tony so proud, and your strength has given me strength in ways you'll never know. Sending you and the family my love and condolences in the days, weeks and months to come.

Very best wishes, 

Debbie xxxx

Oh Pam,

I have been so busy with my own life and my kids and enjoying a weekend together (or not mostly as we only had the middle one home again last night) and when I come back, I read that your beloved Tony has moved onto the next part of his journey.

I extend a small cyber arm for a cuddle or hand hold as I am not sure I can find any words to comfort you.  I think its great that Tony was still able to help you with the most strange 'things' that have happened. But even at this awful time, can I pass on washing up & housework - I hate doing it for my own family!!!!!!!!!!!!

Much love & strength to you Pam and anyone else who wants or needs it xxxx

Hi every one

Pam my lovely lovely lady I am sssooo sorry to hear your sad news. Glad Tony left in peace when he was ready and you were all together. sending you ((((hugs))))) and much love and strength when ever you need it

Julie and anne my thoughts are with you both you are doing sterling jobs.

Have been saving all your posts on advice about equipment and help I know one day I will need them.Although damien is apparently still asleep Chris has been absolutely foul with us and I don't know why. Our daughter had to go into hosp for a ovarian cyst to be removed last week. Not knowing if they were any more or if she may loose one of her ovaries. Very scarey!!! Chris never even spoke to her before she was admitted. We had our two grand daughters whilst our daughter went into hospital. HE NEVER SPOKE TO THEM the whole time they were here it was heart breaking. I am at a loss as to why he is behaving like that with us.

Thankfully just one cyst safely remove but she had adverse affect to anesthetic and could not stop being sick. when her and her partner came to collect the girls she had to run straight to the toilet to throw up. Chris NEVER SAID A WORD.

He went two days not saying anything at all.Then on Thurs he had an appt with a doctor regarding his work. he sat and chatted for over an hour telling the doctor he felt fine walked miles every week and never felt tired. Sorry but this is just not true. I did try telling the doctor but it resulted in Chris going nuts with me. What is happening!!!!!!

Sorry for rant it seems sssoooo trivial with what you're all going through but I wondered if anyone else had had this with their loved ones. He was like this for the first year at least ,after the diagnosis but prior to his seizures and the positive news about damien he was much calmer.

Love and peace

Denise

Pam,

I have been following your story on this forum since joining back in January.

I am so very sorry to hear that you have lost your darling Tony... your story is truly remarkable and you are a truly wonderful, inspirational person.

Sending you and your family a wealth of love and best wishes,

Dawn X

pam,

Just lke to say how sorry i am for your loss xx

I had been reading your posts since i joined the site in nov even though we had never written to each other  i felt a sadness when i read of your loss (if that makes sence)

Thinking of you and your family 

Annette 

Hi Everyone

Still here. Still breathing. Thanks to everyone for their lovely thoughts and wishes. I feel very special that so many people have taken the time to post. I feel surrounded by love and that really gives me strength so thank you thank you thank you to all of the special people on WTBT.

This time afterwards has been a strange mix. My energy has been mainly focused on letting people know and reading messages of sympathy from people. He knew sooo many people!  I have little pockets of time (usually lasting about ten minutes I would say) when I feel desperately sad and get a bit tearful but then I snap out of it and get back to doing normal things. My best friend came to stay for the weekend and made copious amounts of tea, emptied my dishwasher, cleaned my kitchen and bathroom and made sure we all had food. That's why she's my best friend, she always knows what to do. But she went home last night and I felt a little panic at being left on my own again. Fay, like me, has tootled along and experienced pockets of sadness. She came and laid in bed next to me last night and sobbed her heart out and then ten minutes later she's laughing and larking around on the sofa with her boyfriend. Charlie has taken himself off into our annex flat with his girlfriend. He behaviour is erratic. I know he is smoking weed again and am slightly concerned as history would dictate that this never leads to any good. I will keep an eye on him. Unfortunately it makes him hyper and he talks at a million miles an hour all of the time which is hard to listen to after a while, especially when you're exhausted already. Having a conversation with him is like being constantly smacked in the face with a rubber fish, sometimes he talks so fast and for so long. Usually half thought through theories about nothing of any importance but, being stoned, of course he thinks he's being profound. He's all over the place so I will be watching him. Although at 22 (an immature 22) he doesn't often listen to anything I say. Of course, he was one of the lucky ones who was born knowing everything.

So now, the funeral. In our many conversations after prognosis, it became important to Tony that people knew he had provided well for me and the children. He was a workaholic and was away from us for much of the time, a fact that he came to regret as his end drew nearer. I would always counter any such bad thoughts with the assertion that, his hard work had provided myself and the children with a wonderful standard of living and many opportunities for fun and adventure. None of which drew any complaints from us so why should he feel bad? I think that reassured him. So with this in mind, I am focusing my energies on sorting out our house. We are having the wake at home and I want to welcome his friends into a house that he would be proud to show off. We only moved in here in December so there's work to be done! Still boxes everywhere! It probably all sounds a little daft doesn't it? I make it sound like we're living in Buck House instead of a very ordinary place in Gosport. But I know it was important to him. 

If I'm honest, I'm doing remarkably well considering. I had worried that I might fall apart but as yet I have managed to hold it together. I understand that this is probably the early stages of grief when you feel numb and I am anticipating darker days ahead but am putting one foot in front of the other and it seems to be working for now.

As you all know we moved to Gosport in December so that Tony could live out the rest of his life close to his parents. So I now find myself living in a new part of the world, knowing almost nobody and without my husband to share it with. I have barely left the house since we arrived and know only of Gosport what the carers shared with me on their daily visits (and where all the pharmacies are). They haven't had much to say that is good unfortunately. So now I must open my front door and step out into the world again. Having a dog will help. I suppose I must get a job at some point. That'll be interesting. My many attempts at a career make my CV look like the activities of a schizophrenic. Yesterday I had the opportunity to meet my neighbour for the first time.  The poor man. He was out washing his car and was covered in grime and suds as I went for a walk with the dog. "Hello, I'm Tony" he said. "I'm terribly dirty". "Really?" I responded. "I'm Pam and although I've become slightly more conservative over the years, I've had my moments".  I hope the people of Gosport have a sense of humour or I may be selling up quite soon.

Anyway, as usual, I've rambled. Some things haven't changed. 

With much love to all. 

Pam

x

Hi Denise

Thank you for your lovely words. And big hugs right back at you too.

I think for me the personality changes were by far the aspect of Tony's illness that I found most difficult to cope with. At varying stages of his illness I was told he wanted a divorce (he emailed his work colleagues to announce it too!); I was told not to wear black at his funeral as it would make me a hypocrite; I was a manipulative controlling bitch and he wished he stayed with his ex girlfriend; he told his father to change his will and remove me from any possible inheritence. He poured water on my head when I was driving and aimed a cup at me and split my lip! He went to the GP and insisted on being taken into a care home because he'd hit me once and he wasn't afraid to do it again. And on and on and on it went, for months. The children got it too and then as it got worse, his parents and his brother were also included. Tony was a very articulate man (with a good aim) and didn't we know it!

I can't say I have any sage advice about how you can change it. It would be nice to think a minor tweak in medicine or a change of diet with restore the brain's chemical imbalance and we could have our husband's back but, alas, if there is such a thing nobody told me about it.

I have come to the conclusion that this aspect of the illness must be survived rather than cured. I strongly believe that no amount of energy in whatever direction will change what is happening to Chris right now. So in order to survive we must change our attitude to it and the way we approach it. So my advice is that you should focus your energies on finding a way for you and the family to support each other through it, rather than try to fix it.

"It's not him it's the tumour" began to wear thin for a while but it is so true. Try to find the time every day to think of the old Chris. Re-visit a good memory of a time when he was the man you loved and hold on tightly to that. Think about what the old Chris would have said to your daughter as she goes through this awful time and tell her 'I think your healthy Dad would have done this for you or said this or that to you'. These conversations gave our daughter Fay great comfort at times when Tony was being awful to her. This Chris that is in front of you is not going to respond to what is going on around him in the way that your Chris would because, for whatever reason, he isn't there right now. It's almost like a possession.

Tony was so appallingly bad over Christmas that, in the end, we just decided to ignore him and get on with having a good time. I know that sounds terrible but getting some emotional distance was the only way to stay sane. I made sure he was clean, fed and had what he needed but we generally didn't react to anything he said. We were always kind to him but we just didn't take anything he said personally. It was like caring for a stranger. It WAS caring for a stranger.

Thankfully for us, and for many many people I have spoken to on this site, this period did eventually pass and my loving, caring Tony came back and many new lovely memories were made and kind words said.

So hang on in there Denise my love. You're doing a fantastic job in truly horrendous circumstances. Your Chris will come back to you. You just need to make sure you're still able to string a coherent sentence together when he does! 

Big cuddles.

Pam

x

Ah Pam, you're coping well and I wish I lived close enough to give you some practical help.

Yes, now's the time to start exploring your new town, it'll give you some time and space for reflection by yourself.  You'll also be spared the "last time I was here, Tony was with me" feeling.  Gosport is YOUR town.  There must be some nice places down on the seafront where you can sit and reflect.

Charlie.  Your poor Charlie.  You're doing your best with him, but obviously it's hard going and you already have a lot on your plate right now.  I expect you've considered getting an outside counsellor for him.  At a guess, I think that Social Services may be able to help here.  It might be better for you to engage with the councellor yourself.  If Charlie sees the rest of the family talking with him/her, then he might open up some more.

Please don't feel as though you owe yourself a breakdown at some point in the future.  You'll get a lot of people and leaflets telling you how you should be feeling at a time like this.  Ignore them all and just carry on doing what you're doing.  If your heart and soul want to grieve at a particular time or fashion, then just let it happen when it does.