We Talk Brain Tumours

Oh Jo,

I have been so full of our situation that I failed to notice the passing of your dear Dad. I am so, so sorry. You have really been through the mill. You have been such a wonderful support to me and others and I will forever be in your debt. Please, please think of yourself now. Your are indeed a star. My love and the very best wishes. Martyn XXXX

JMS sending u huge hugs xxxxx

thanks everyone for you love and caring messages.  As you know they mean so very much. Martyn, I have no idea why but yours tipped me over the edge and allowed me to release those necessary tears, thank you...

2012 has to be a better year for most of us.  

love to all 

joanna xxx

Martyn,

So good to hear that the service went well, it sounded so fitting.  I hope that your sense of peace continues.

Joanna, I texted you last night, but just wanted to lay down in print that I'm thinking of you.  I really hope that next year will see more in the way of peace, happiness and laughter for you.

Oh Pam.  It sounds as though you're really going through the mill here.  You're having to cope (and you're doing incredibly well).  You certainly need far more help.  See what you can do to press for some input from a psychologist.  There may be some underlying motives here that go beyond just the effects of the tumour.  I was just thinking of how young children can be very manipulative in quite complex ways without really knowing what they're doing (just that causing a fuss for long enough will result in what they want).

I've spent the past few days with Ali's parents and that side of the family.  We had a lovely time, but there was a gap there.  Everyone did their best to fill it in various ways, but I still feel as though half of me is missing.

Here's wishing everyone a peaceful and reflective new year..

To our dear G.

We begin a new year with broken hearts and don't know how things are going to go on without you. We hope that you are doing well and are not missing us as much as we are missing you. It's so hard but we are really going to make the most of everything. We have made over £1000 so far to help with BT research and your beloved painting is due to be auctioned with the proceeds being donated as you wished. We love and miss you sooo much. Angela and Anna xx

Oh Angela and Anna

What a wonderful letter.

And as I read it I started to think about your Dear G  and imagined him reading your letter, smiling as he thought of you making the most of everything. In my version he was content and enormously proud of you. And if I think it, then it must be true!

With much love and hugs to you and your broken heart.

Pam

x

For all the broken heart out there. May 2012 be a peaceful....and a better New year.

Love Cathi x

Hi Pete

Thanks for your kind words and I completely agree. I am in the process of trying to find somebody to offer Tony emotional support. Unfortunately the Palliative Care Nurse is away until 9th January so we can't get the ball rolling via that route until then. I have found a local cancer support group which has lots of useful contacts and I will call them tomorrow to see if they know of any qualified counsellors in the private sector. Am happy to pay if it means he gets some help sooner rather than later. I think talking to somebody will help him enormously.

You are also right in your speculation about it being the same as a manipulative child, that's exactly what is it. He has always been a headstrong character, and knew exactly how to get what he wanted. it used to be one of the things I Ioved about him, knowing exactly what he wanted and going out there and getting it. it was very attractive to the 18 year old me who, at the time, wouldn't say boo to a goose. It made our relationship quite a firey one but it worked for us - we've been married for 27 years so it must have! Unfortunately, in the new world that we find ourselves in that character trait does not translate into anything good. Suddenly finding yourself in a wheelchair without use of your arm or leg and having to rely on somebody else to do everything for you, including wiping your backside is a massive thing to have to take on board very quickly. Combined with the terrible prognosis and the loss of the career success he has poured his heart into for many years. His tried and tested strategies which have worked so well over the years are no longer of any use and the build up of frustration and anger is enormous. Until he can learn to accept the limits that have now been imposed on him then I see no let up in the aggression. I worry for him that this is going to continue right up until the end but I also worry that, once he accepts what's happening, he will go downhill more quickly. It's such a complex dilemma for one which there is potentially no right answer. 

I can't remember if I've posted this already but the PCT have agreed to increase care and we will now be getting four visits a day from carers to help me shower and toilet him. I have also been awarded two nights of sitters and will be having somebody sit with him now on Tuesday nights and Friday nights so that I can get a good night's sleep at least twice a week. The GP was completely useless bless him and when he came to visit was very clearly, completely out of his depth. I think the average age down here in Alverstoke is probably 75 and he's more used to dealing with weak bladders, aching joints and memory loss. He ended up prescribing water tablets when he came! 

We've also been referred to Countess Mountbatten Hospice in Southampton and I have spoken to the lovely staff there who are helping us as much as they can which is much appreciated.

Well, Happy New Year my lovely Macmillan friends.

Here's hoping that the big headline this year is 'CURE FOUND FOR CANCER'. Now wouldn't that be nice?

Pam

x

Pam.  It's really good to see that the number of visits has been ramped up.  I'm sure that you'll find this a huge practical and emotional help without taking away any of the love you have for Tony.

Hopefully, these extra visits might diffuse some of Tony's outbursts, or divert them.  You said that Tony calmed down a lot when he was taken out of the house and placed into official care.  It might be that in his outbursts, he's trying to force you into not caring for him and thus trying to spare you from this task.

Hopefully, some psych help with be of benefit to you both.

Wishing you peace over the next few days.

Hi all,

Sorry about my last post, it was meant to go on the 'light a candle' thread!!

Pam, I don't know if this helps (might have already been suggested) but when G became aggresive they eventually decided to drop the dex and introduce a drug to calm him (sorry can't remember the name) they said that it was prob the dex causing his aggression and the new drug would counteract and not sedate. This worked and G came back to us. It was heartbreaking when he went through the swearing, throwing, threatening phase and he was certainly never like that prior to tumour. I know what you are going through and hope that things improve. x

All the best for 2012 to you all. Ange x