We Talk Brain Tumours

Hi to all on this site,

Little sis, is looking for WTBM. You are probably best to show her how to log on

Love jmd xx

Peace and comfort to all.

Laura

I'm sorry, I haven't spoken to you on here before, I've been busy trying to catch up on everyone's stories.

Never be embarassed to talk about continence (or lack of it) on here. The day I first saw my dad in a nappy I thought I'd never smile again but I came home from the hospice and talked about it on here and realised it wasn't such a big deal.

As dad's disease progressed he felt the urge to urinate more and more (often most of the night - they were going to test for diabetes but he never got that far) but often produced little urine. Then he started to get very little warning that he needed to "go" meaning he couldn't move fast enough to the toilet so weed in to a jug. Not dignified but served a purpose!!

Love to all.

Naomi.xx

Evening all.

Once again, apologies that I have been AWOL. I was saddened to come on here tonight and see so many new stories.

I haven't felt up to posting and feel that our new passengers need optimism, not sadness. Two of my children have also been hit by the Norovirus this week and have been very poorly.

In one way, I am so looking forward to seeing the end of 2011 as it has been by far the worst year of my life. On the other hand, I feel such immense sadness at starting a new year without dad and feel like I will be leaving him behind. I'm aware that I'm probably not making much sense, it is incredibly difficult to understand.

I am learning to live without dad and am coping reasonably well in my new role as mum's supporter. I have more days without crying now but my grief still almost suffocates me at times, and comes without warning which isn't very helpful. Today we were supposed to be going to the Hospice's "Light up a life" memorial service at Colchester Castle (it is for everyone who has lost a loved one this year) but mum didn't want to go and I felt it wasn't right to go without her.

Anyway, life goes on, Christmas is coming and I have the first of four carol concerts to attend tomorrow night!

Thinking of everyone on here tonight and love to all,

Naomi.xx

For us, toileting and incontinence was the source of much humour for us.  Anyone on the outside would view this as being highly inappropriate, but for me it was a way of dealing with the indignity (and yes, the mess).  Making light of the situation also served to reassure Ali.

And, if we could find any way of embarressing someone else, we'd take it (the carers were a prime target!)

The whole thing is nothing to be embarressed about.

As the saying goes "**it happens"....

Love and peace to you, Naomi. I hope your kids recover comfortably.

Thank you Pete, my love and thoughts are with you too.x

I forgot to mention (happens a lot at the moment!) that we have the date for when dad's ashes are being interred.

My mum didn't feel it necessary for her to be there when they were being interred (we are very different - mum is able to compartmentalise things and carry on, I am far more emotional) but I was desperate to be there so she has said she will come. It will just be me, mum and the vicar. They are being interred at 10am on his 66th birthday - 26.01.12. We have spent the last couple of weeks choose his plaque, wording, lettering etc. We are having a very simple inscription - just his name, DOB and the date he died. I am looking forward to having somewhere to go and feel closer to him.

Hi Everyone

Not been on for a while as we’ve been busy moving house. Which, as many of you will understand, is a lot less stressful than the other challenges I had to deal with prior to that!

We are now in our new house, surrounded by boxes. It’s chaos but already I can see that it was the right thing to do. Tony’s brother and his wife have been wonderful and pop in all the time. The care support available in Gosport is a million times better than the care package Tony received in Lambeth and the children have both been home for the weekend because it is now much closer for them to get here than when we lived in London. Hurrah! For the moment, at least, I feel a lot less lonely which is such a nice feeling.

Tony’s earlier news that his brain tumour had shrunk was mindblowing but, I have to be honest, the reduction in tumour size hasn’t resulted in any improvement in Tony’s general condition.  As well as the usual range of challenges including excess weight gain and increased appetite due to steroids, long term DVT and continuing decrease of mobility on the left side of his body, I am sorry to report that he is still not bounced back to the Tony that I knew and loved. The Tony that I have now sits intensely tap, tap, tapping on his iPhone all day. He is absolutely obsessive about everything and spends his whole day planning things. It’s non-stop. iTunes (he has sooooo much music on his library it’s crazy), he’s had us all uploading our CD collections onto the laptop all day, his iPhone software, he wants to buy a speedboat, buy an aquarium, get surround sound on everything including the fridge, new telly for his bedroom, plan a trip around Europe and on and on and on it goes. This weekend we’ve had a visit from a carer called Gladys from Lambeth who Tony has taken a shine to and has convinced himself that he wants as his carer. Of course it was just a crazy idea. He absolutely won’t listen to any of his close family. He called his best friend in London who drove all the way here (Portsmouth) to explain why it was a crazy idea. Not before poor Gladys had travelled all the way from London by train only to arrive and find that her potential employer is quite possibly as mad as a box of frogs!

I have enough nous to understand that the constant planning for future events is a response to the fact that he’s been told he has 12 months to live (if he’s lucky) but it’s just absolutely exhausting for the rest of us. The problem is that, if you don’t do what he says, then the response is just so horrible, rude and insulting. He even called his own daughter a “see you next Tuesday”. The daughter who he has adored, cherished and worshipped from the moment she was born. His little cherub? And what did she do wrong? She questioned his need for the patio awning to be replaced in the middle of winter.

It’s as plain as the nose on your face that you want your loved ones to live as long as possible after being diagnosed with a brain tumour but I feel as though I’ve already lost Tony. I can’t remember the last time he responded in a way that reminded me of the man I originally married. When I look at him I feel an overwhelmingly urge to protect him, despite the behaviour, so I know that the love is there but where is my husband? He’s in there somewhere and I fear is lost to me forever. Is there any point in hoping that I may see him again some time soon? Or do I just accept he has gone?

It’s such a horrible horrible horrible horrible horrible situation not least because you can’t even comfort yourself with fantasies of what you will do when it’s all over because that means you’re fantasising about the person you love not being alive anymore!

What a wicked, evil cancer this one is.

Wishing you all a million times more strength than I have right now.

Pam

x

Dear Pam

Sending you strength, hope it gets to you soon.

love jmd xxx