We Talk Brain Tumours

the old site allowed us to edit a post. This would have allowed me to correct the Typo of 'the skehans'.

Still, it's not he first time i've spelt my name wrongly and our dyslexic son frequently gets it wrong. I supsect he has inhretied form me!

Martin.

Martin, I am so sorry.  Your post, like so many others, has touched my heart.  I can relate to much of what you have written.  Peter too requested to go into the hospice when they offered it for they thought would be respite for us all - little did we know that a week after discharge he would sadly die so unexpectantly.  But you know it was the fact that Peter had resisted many other times the offer of inpatient care although he did go to day hospice on Mondays - I even told the GP that as Peter had been so insistant that he be admitted I had taken it as a sign that he wanted to pass away there rather than at home as we had spoken about.  Unfortunately for us this wasn't to be as there were no beds available at the hospice when that time came. 

I'm glad you have found the same comfort I found with the regard the care and support found at the hospice.  They gave us a week where Peter was on top form and that has left us with some good memories; he could never have been able to respond at home as he did whilst in the hospice.  He certainly felt at peace whilst he was there and I hope Becky and your family do too.

I hope you continue to feel so supported and also think you are so right to take your cue from Becky.

Yes, it's so hard for children isn't it. The funeral will be hard too, there's no escaping that is there?  I hope they have someone who understands, like a child counsellor, to talk to, it's important for them to get their feelings out.  Becky's friend died on Peter's birthday, another reason why your post struck a chord. 

Take care Martin - thinking of you so much at this particularly hard time xxxx

Hi Martin,

I'm so sorry to read your post, I also find it very touching and indeed poignant. To read your positive report  about the hospice is a boost to me and I'm sure others who are not quite so far down the line as yourselves. Every good wish available to you, Becky and the children.

Mandy hi, supportive as usual.

Love and best wishes to you all. Martyn XXXX

Hello Martin, You post was very moving. You are clearly making this difficult time as good as possible for Becky. It must be so hard for you and I send  you lots of love and respect. xx

I noticed with W, that later on, as his world was getting smaller around him that place was much less important to him; it was the care and love he received that was important. There they can micro manage her medicines and especially the steroids as that becomes more complex in the later stages. One of our very wise train companions explained to me about that and I'm still grateful to her. xx

We also had a close family funeral in W's last few months and it can seem so hard that so much sadness has befallen you in such a short time.
I know this will sound mega soppy but really it's the love you show that shines through.

Love,
Miggins, xx

PS you can edit a Mac message by pressing the tab marked More then Edit. Not that that is at all important. 

Wise words Miggins - I agree the actual room and place becomes less important - it certainly is the love and care that is important.  I remember thinking 'why am I begging the consultant to get Peter moved from the hospital to the hospice' - I questioned if I simply wanted the story to have a specific ending as I realised it now didn't matter to Peter, it only mattered to me.   Though I am saddened at the level of palliative care Peter received in hospital and I know Peter deserved better, the fact remains I could tell he appreciated us around him and though I'm pointing out my concerns to the hospital I hope and hope that this is my battle and my worry as Peter did seem to be on a different level - I could see the love in his eye and I hope he could see ours for him. 

Without doubt I would much rather have had Peter in the hospice as I know the support would have been what we needed, but ultimately I believe it's far more important to let our loved ones know how much they are loved and it doesn't matter which room that happens in.

Love to all xxx

I'd kill for a pie, lots of kidney please Mrs.

I was going to mention to Martin about the more button, but at the moment it's not dropping for me! same old, same old I suppose.

MartynXXXX

Mandy, it is, I'm sure, your battle and your worry and unfortunately part of your memories but I'm sure it is not Peter's - if I may presume to say that.

I have had that exact thought when you have mentioned telling this hospital about your experience. You are doing the right and social thing bringing the things  that did not go well it to their attention. They should make improvements after your experience.
But that is the external issue, I'm as certain as I can be that in the final stages, it is having people who love them by our loved one's side that is the important thing for them. I'm sure that is their perspective.

I have witnessed two people I love decline and die from degenerative illness and it was clear in both cases how their world shrank from their being healthy when the world was their world, then their world became the locality as they could no longer travel so far , then the house and garden then the house as they stopped going out under their own steam. Then their world became their bedroom and finally they seemed to retreat inside themselves.
In those final stages place is not so important, but love and care are.
That is my experience.
Miggins xx

Hello Martin, I have just read your very moving post too and I quite agree with Miggins that at the end stage the 'room' is not at all important to the loved one.

From about 2 months before she died my mum didn't really seem to be aware that it was her own home she was in, she would say things like 'This is a nice place we're all staying in isn't it?' and would tell visitors and friends that 'We are all getting good food at this place'.

She was though, totally aware of us, her family and I remember thinking at the time that as long as the people who love and care are there then the place or room really doesn't matter.  Family and friends are the key and warmth to a happy, peaceful ending for the patient.

x

Martin you have unintentionally instigated some very moving and personal posts.  I hope everyone that needs reasurrance about the future can take comfort from these experiences and now knowledge xx

Hello Martin,

What an incredibly heartfelt and very moving post, i can only repeat what others have said in that the 'room' or location really means little in comparison to the people who stay with and surround our loved one.  Dad was at home with us and thats the way we wanted it, and we presumed thats what he would have wanted too, he may have been completley unaware of where he was..we just hope against hope that he knows that he was never alone and that we were all with him at the end.

Wishing you much strength and sending you lots of love at this time.

Becca x