Wednesday, 24 November 2010

clocking in

I am literally clocking in to say "Not Dead Yet", as my inbox suggests you need to know this. I've got some time yet. Chill out. All those that really need to see will get to see me in good time.

The Peace Hospice crew are trying to get me permanent funding in this Hospice, or else it may be at another nursing home place (which I don't want). The bottom line is that the lovely crew here are in agreement that my home is not an option, as I need too much care and I think they would love me to be able to see my days out here. But there are people who clutch chequebooks who need convincing, who don't know me and I, to them, am just a name on a piece of paper.

Speaking of 'home', I have gone back to the flat to pick up a few things this afternoon and try to sort myself to attempt to do some work done. You will not believe how much energy it takes to get up and about. I hate being out, its too much - its depressing, painful and, well, ... can't explain but just a car journey or a flight of stairs fucks me, physically and emotionally, as you feel how detatched, different and weak you really are.

And in regard to 'work', well my remit is to somehow dump 14 years worth of data that's in my brain out into a understandable-for-someone-else format. My best friend has been up to support me today, but it still ended with very little actually done and many real tears of frustration and sadness ... thankfully my best-friend does good best-friend hugs.

So, I'm pleased to be back at my Hospice (like I never want to leave this room again!), but I worried. I'm worried I won't get a permanent placement here - its really a hospice for the short-term terminal and I've got a few months, I think. Everyone here seems to be fighting for me, so let's hope. I'm due a bit of "luck" and having a room here until 'The Bitter End', is all I'm asking for.

The thought of life in an inferior nursing home, or having to install hospital beds and nurses into my flat just seems horrendous after spending time here. Like everything in my so-called-life in the last 12 months, we'll just have to wait and see ...

I haven't blogged much about my day-to-day routine and it's because there's too much detail to go into and I am just sick to death of talking or explaining about it. Just assume that everything is hard bloody work but everyone here is amazing and kind and all that can be done is being done ...

The only way I felt I got close to summing up my feelings, was by saying to someone that "it is now my full time job to wake up, minimise pain and get back to sleep". Its my job just to live. Anything on top is a bonus.

I'm frustrated. I'm tearful and I don't want to write this sodding blog but with hundreds of well-wishing friends, family and near-total-strangers emailing me, its a duty that I need to do.

Bad mood. Sorry. I'm "OK" just stressed about work and future of the Hospice. I'm sure you can understand. I

This blog in unlikely to be updated as much now, ironically, when there is the most to write about, but, well ... You've had nearly a years worth of free content out of me and ...

Night.

Sent from my BlackBerry® 9700 wireless device

25 comments:

stevetanner55 said...

Hey. Whatever you can give is a bonus. Even a small post touches lives out here :) Really hope that all works out for you with the care etc - and that you can find the strength to make some new music.

Anonymous said...

Just my thoughts... It's an obvious balance: many folks want updates because you're loved and your situation touches them, and at the same time none of those same folks would want you to spend one minute writing anything you don't feel like writing.

My advice is to write when you feel like writing, but do not feel obligated or push yourself to do so. There will be some times when writing makes you feel better afterward (relative to the energy required to motivate you to do so in the first place). I've found all forms of writing to be like this.

But do not for one moment stress yourself when you're tired just to communicate with others. Rest is important. With it you can probably go the distance. Without it none of us can. You have the right to be the master of the level of balance that works best for you!

Rachel said...

Spence, almost a year to the day since your diagnosis - so sorry to hear the news my friend. As with so many things, you are leading the way where the rest of us will one day follow. Thanks for all your help and support and for having the courage to share your path, you really did live a million lives in one. No mor...e pain - wishing you peace forever, I will never forget you xxx

Anonymous said...

RIP Spencer xxx

Anonymous said...

Miss you, Spence.

Anonymous said...

Spencer you were dealt a shit hand your blog has been amazing and shows just what a talent has been taken! I am gutted but will remember the good times, rest up now no more pain xx

Sus said...

R.I.P Spence.

Anonymous said...

Has spence left us?

Danny said...

If it is true that you have left us, it is a great tragedy. The world is a lesser place without your gentle soul. You endured so much, fate was less than kind to you. Yet you faced life with great vigour and hope, you never complained. Though we never got to know each other as well as I would have liked, you are and always will be an inspiration to me. If I could be half as graceful as you, despite the immense difficulties that life presents, I would consider myself to be truly blessed. You are now in Heaven whilst we are left in this world weeping and mourning, the answers to 'why' continue to escape us. Though your passing is a loss to us, I am joyful that you can suffer no more and that you are in a better place. May your soul rise straight to Heaven for you have truly served your time in Hell during this life. You'll be in my prayers, always. Danny.

Anonymous said...

yes, Spencer passed away in the early hours of Sunday 5 December at his Hospice x

Anonymous said...

I'll pass the word along, thanks.

RIP Spencer. Still straightfuckin'edge ay.

Anonymous said...

See you on the other side Spencer - love to you and your family.

Claire said...

was hoping it wasn't true and Spencer was going to pop up and update the blog :-( at least he got to stay in the hospice he so obviously wanted to and finally found some peace and pain relief, i think we have lost a very talented, very strong and brave man, and i for one am so sad that after all of his demons he fought with strength and character he was faced with a battle he just couldn't win, i hope you are watching Spencer and know how much you are loved, sleep well xxx

Thomas B. said...

You will most certainly not be forgotten; I'm sure this blog has and will keep being an impressive portion of a true life story. I'm sure that others dealing with similar diseases, will find much support and be able to relate to what you wrote, all others will most certainly smile at all the witty comments and the way you could say something deadserious, but still making people smile at how you say it.

RIP, S.S.

lolski said...

rest in peace buddy.

Anonymous said...

RIP S.S.

Anonymous said...

Rip spence. Miss you xxx

Anonymous said...

Safe travels.
Sam.xx

Anonymous said...

RIP Spencer, you were amazing.

Ryan said...

Thanks for everything Spence.
A truly amazing individual.
I'm thankful for the relatively short time we ran together, chatted and just got on.
You said my running was an inspiration to you. Nothing like the inspiration you've become to me. Nothing!
Peace at last.
RIP Spencer,
Your near-namesake Ryan Spencer

Anonymous said...

I am an old friend and situated 'up north' if anybody here knows how i can contribute towards the hospis or send flowers/funeral details etc?x

Anonymous said...

Spencer's family are posting funeral details on Facebook once finalised so I will repost those onto here once they are decided x

Anonymous said...

@ the poster 2 posts up:

http://www.peacehospice.co.uk/donations_membership.asp

I know spencer really valued his time here, and they seem a very worthy donor recipient

Anonymous said...

many many thanks for both the website details and the funeral information much appreciated xx

Anonymous said...

Spence, I miss you and your posts :-(