Devastating News

Panama_Jack666

I wish I had the strength you have, Tommy.

I'm not sure how you manage to keep such clarity and focus in such testing times. 

It may just feel being human for you but it looks super human from my perspective!

I have so much respect for you. Keep on keeping on!

Blackjack

Tommy, my heart is breaking for you right now. I just wish I could find the right words to say.

KKJale

You're amazing people. Thinking of you. 

Emp_Fab

I don't know if this is going to sound weird - I'm a bottle of Merlot in, but we all have our time.  Sheena's is going to be here at some point, so is yours, and mine, and all of us.  None of us are alone in this.  I know her time is going to be shorter than the average, but not as short as some, and not as long as others'.  When I worry about death (and a lot of people do), the one thing that comforts me is that I know I'm not alone.  Every single one of us gets it in the end.  Nobody is immune, from Kings to the homeless.  Wherever it is that they go, we will follow them when our time comes.  Nobody gets left behind in the long run.  We're all together.

thomasross20

Oh no 4am and having to get the nurses again and also zzzz.

Just had another intravenous shot and a butterfly put in, plus more oral oxynorm. Running out of oxynorm do need GP review and prescription - just so I remember myself if I miraculously get back to sleep (sleep has been a rare thing this last week!). Nurses are brilliant. Stretched, though.. only two for the whole district doing out of hours work!! Worth EVERY penny..

holnrew

You're incredible. I feel lucky to know you in some capacity. We're all here for you.

thomasross20

Trying to think what's happened since last...
 
I'd have liked to put some photos on but for Sheena's own dignity I'll pass - she is very bloated now. Her legs are like tree trunks due to the body fluid which builds up (quite heavy to lift). I had to massage her feet and legs quite vigorously every night for a fortnight but it didn't seem to do much. Then they tried "strapping" her legs with tape but it didn't make them any better. The yellow in her eyes is a lot more now, and it's also on the skin around the eyes. She needs help with more things I wont go into, again for her own dignity. It's quite tough work now as lots more lifting. At least she can still get on her feet at times and isn't bed-ridden ... Also, I don't know if it was the house move or the new car or something else, but my back is aching - I'm actually thinking of trying a chiropractor as per @Grunfeld's suggestion in a previous thread, because sometimes when I go to lift that heavy wheelchair out the boot of the car, it can really hurt! And my wrist joint is sore, too (no jokes lol!) - I do the odd push-up every now and then but I can't seem to put too much weight on it when it's at an angle. I'm just worried I might physically hurt myself and not be able to help her when it really gets hard.

The district nurses are here every Tuesday morning to take blood for a transfusion the next day. They helped with getting all the home aids we now have:
- stair lift (guy wore muddy shoes so spent some time cleaning the stair carpet lol)
- wheelchair
- walker
- wheeled commode
- special cushion for sitting on
- two toilet seats with bars
- shower stool
- hospital bed + tray (it's daunting seeing that in the living room - had to re-arrange the place last night for it)
- side rails for the bed upstairs

Palliative care nurses and physio's are also a good help. These nurses are brilliant. The stairs were way too much so the lift is a god-send.Her medication list is massive. She hadn't been forthcoming about her levels of pain but recently she started being honest and went from 5ml or morphine derivative (oxynorm) to 20ml a day. Then just a few nights ago we had the nurses out at 10pm, 4am, 8am for injectible morphine shots. That triggered a medication review so she is now on slow-release oxynorm tablets on top of oral oxynorm, as required (when the on-call doctor prodded her liver side the shrieks were so loud). We were out today getting sheets and whatnot for the hospital bed downstairs. I don't know how the hell I'm going to lift her in future - I'll need two people - for when she needs to get out of the bed and go to the toilet, with my sore back and given the steroids has increased her weight so much. She still looks pretty as ever to me, though - and as ever, she is being so kind to everybody and buying nice meals for the girls and recording video messages (I think I also mentioned we were at build-a-bear recently and she did us all these bears with personalised message when you press the paw). She says she's holding out for my birthday at end of this month. Sorry if I'm repeating myself. 

I'm still waiting on Virgin to fix the mess they made with our house. 

Today was her 6-weekly doctor's appointment and he said no more need for further appointments... a million things run through your mind, in general.. what meds and when? I need more help, but at the same time, I wish for quiet time. Are these crocodile tears? What will happen afterward? Having been with Sheena for 10 years, in another ten years will I remember remembering her more than actually remembering her, if that makes sense? Do I cry for myself or do I cry for her? You know, usually folk think "what will I do without this person?" but now it's more "what a shame, she can't help herself like she used to - I'm so sad for her" - it's so sad to see her in a permanently tired and "woozy" state where her speech is slurred.. and her eyelids always seem half-open. Her now-chubby chops just make me want to cuddle her even more!! We were sitting in bed reading the funeral details last night - our sales advisor for the house is going to do the flowers - "SHEENA" in purple and cream and "MUM" in some other colour. 

Her sister was round the other day and asked if Sheena would consider Christianity at the last minute - not something Sheena wanted to hear. @Alnico has been in touch a lot and been a good help, some practical suggestions lately that are helpful. This is the last month I will be getting paid at work... so I have to really watch it now. I can't go back right now, and while working from home is an option, I don't think I can mentally handle it. There's a large support network for her, which is great. Oh, still some epic nosebleeds. Despite having a good support for myself, let me tell you that in a situation like this, you feel alone. I know I'm not, but it's hard to put into words. Sometimes I think this is too much from my perspective, and I feel bad for spending time writing when it should be spent with Sheena. Like I said to her in my wedding speech... her love is the most true and genuine thing I've ever felt and she's never let me down once. Never been late for anything, never ignored me, never not bumped me for some other occasion, in a crowded room she'll always look to me to let me know I'm not alone. I'm really lucky to have her. 

Anyway I've decided I'll post a pic or two to make it more real. Here she is before the steroids took even more effect. You can see she got short her now to manage better and put some atomic grey dye in:
https://drive.google.com/open?id=1QdE90r9-fNGUEFtkj3hFPdIL-geBU--gPA

Oh and we got a patio done (this took a lot of planning and work in advance). I am totally going to have to work my @rse off for ten centuries to pay all this off
https://drive.google.com/open?id=1EQWiteor_rMEDmKMGQmPOLw0rlGylSpADA

And during those times at 2, 3, 4am when the nurses come, I usually don't get back to sleep (her breathing is very "noisy" these days so I get little sleep in general) - so I get up and program drums. For hours. @RedRabbit that's when I find the time these days to do work on album-related stuff (plus, I don't watch much telly - either I'm a reasonably efficient person or a saddo lol). 

Oh, I got that stand @TTony... the 3-guitar version with expansion for one more. You can see the white PRS @Alnico & @Bridgehouse et al very thoughtfully got me. Thankfully, I haven't had to sell any more (yet!)  like I did with the purple PRS. 
https://drive.google.com/open?id=10ZKZslyK8zfjiJ2jPUPgZ_Ja_h1cM1UGiw

Also, some of my guitar room:
https://drive.google.com/open?id=1vLQmysUZea6E2xQhuXZGQ0PXaLrDDIgHoA
https://drive.google.com/open?id=1-KF8jTTYQYt-xN4FrmAUYHGTl8RZPnCsXg

Stair lift!
https://drive.google.com/open?id=1T18PCyc3NrAwD4w8TR0DQGE5eJtJX1J3JA

The wheelchair!
https://drive.google.com/open?id=1ZlMKCHBtbFIk3u1g8feEgLuZWeKOJ5tuZQ

Sheena got me these cool-ass frames for my degrees! They've just been sitting in tubes for years..
https://drive.google.com/open?id=14O45zvvvw9HZ2QbyoT-rDRtOTKjZuNaOhA


These are the photos of Sheena going on the service card and also a massive canvas at the humanist funeral:
https://drive.google.com/open?id=0B59lkNr26fmlZWhPdkxNVGhZbDg
https://drive.google.com/open?id=0B59lkNr26fmlaDE5ZEZlZGQ3WWs
https://drive.google.com/open?id=0B59lkNr26fmlWGNFWHJrczdlWUk

Cheers!

boogieman

My usual thoughts: you are an awesome man Mr Ross. I swear I couldn't cope with half of what you're doing right now.

Re lifting Sheena, I would ask about getting a hoist for her. You can't lift her by yourself, you'll completely knacker your back! 

RedRabbit

To be honest I'm even more bemused by the fact that you still find the motivation to do anything. I think I'd be an absolute wreck in your shoes. I'm just amazed at how strong you are managing to be through it all. 

I feel bad for not vocalising any sort of support before now but I've followed this from the beginning and have just been at a loss for words. Just know that my thoughts are with you and yours. 

Take care of yourself, Tigger.

Cabicular

Don’t worry about what you’ll feel later
This is the most important bit to take one day at a time.
sounds like a lot to take on at home
is it time for hospice?
I’m just worried you might be getting overwhelmed
Sheenas call but it sounds like it’s getting serious now

thomasross20

Not time for hospice yet (District nurses are providing an excellent support right now).. though hand on heart I think it's drawing near, maybe weeks (though she's a tough one, it's been 7 months !). I actually believe she's willing herself to go on longer. She's still eating ok and hasn't lost weight so while it's getting worse, it's not at that stage yet. I don't know how it'll happen, if it will be gradual like now or sudden. But definitely, now is the time to hold her hand more than ever before and forget about later on. 

On that note, thanks for your kind words, and I'm going to watch a film with her

Grunfeld

thomasross20 said:

...but my back is aching - I'm actually thinking of trying a chiropractor as per @Grunfeld's suggestion in a previous thread,

Ah, literally just for clarity, I'm on the scientific side of medicine and whoever suggested "chiropractor" it wasn't me.
So, not debating the ins and outs cos it's not the time or place, but I generally suggest:  go with a personal recommendation for a good therapist (which of course could include a particular chiro), however in the absence of that go with the evidence:  Physiotherapy --> Osteopathy, and all in the context of orthopaedic common sense.*

Tom, I've been following this thread.  Not commenting, but following.  Take care.


* Orthopods @ArchtopDave are possibly quietly laughing at this notion.

breakstuff

My thoughts are with you both.Such a brave couple,and you're a real inspiration Thomas.

tone1

It feels almost intrusive reading your thoughts and feelings.....I hope I’m half as strong as you are if ever I’m in your position...I really hope it’s helping you posting here by getting all your thoughts out in writing.
its very sobering and an Honour to read 

thomasross20

Cheers guys - I think from this point, I'm going to be on here a little less and stop describing the situation so much as it isn't going to get any better (things I won't be wanting to say or describe for her own dignity sake) and I should spend every millisecond with her. I know I spill quite a lot of personal stuff - that's just "how I roll.." I'd be a rubbish poker player..!! So hopefully I haven't gone overboard with all this but WE are glad for all the support you have and are giving .. and I'll catch you later.

Moe_Zambeek

You're doing good things Thomas. No one could ask for more. 

ToneControl

You're handling everything admirably
Don't doubt your feelings being genuine (i.e. your "who do I cry for" thoughts), you'll be in a "coping mode", I've been through it. Emotions don't appear at predictable times, and you have several different ones to handle at once. 
I compartmentalise things, which helped/helps me. 

The other things I learned (this is with my parents) were: try to spend some time every day in a situation where people just treat you normally.
My boss at work, who is pretty intimidating to most people, advised me "don't tell everyone at work, their collective sympathy will upset you". He was right, some time every day in a different mind set helped me. I'd say spend an hour a day in a situation where you are not "on duty". Long-term carers typically arrange respite care, to enable them to take a breather for a few hours, so make sure you go for a walk at least 

Deadman

You're in my prayers fwiw Thomas.

earwighoney

ToneControl said:

You're handling everything admirably
Don't doubt your feelings being genuine (i.e. your "who do I cry for" thoughts), you'll be in a "coping mode"

Likewise, I'd like to echo the observation of you'll reach 'coping mode'.  @thomasross20 you may question how you may act then but from my perspective I am sure your actions in times to come will to continue to reflect the dignity & humility of your character which has been ever present in your documentations in this thread. 

You also wrote that you feel bad for writing at such a time, please do not guilty for doing so; it seems it could be a cathartic means for dealing with things.  

As for writing a lot of personal stuff it is a great strength that I myself admire greatly and I am sure many others here do so.  As for it leading to having a unfavourable demeanour for playing poker, there are other hobbies - I'd recommend knitting, disco dancing or hunting for treasure if you seek an alternative. 

guitars4you

I'm not sure if it is good or not, but others I know who have been in such a situation as you, and I was with my mum just over 30 years ago, but at least you do get the chance to say goodbye - Some have to cope with a sudden death for one reason or another and never get to speak like you and Sheena can - The big negative of course is feeling so helpless whilst they suffer

As for in 10 years time - For ages I could really only recall the last few mins I spent with my mum - I was with her for the last 30 mins before she died and for years this memory overrode any other memory - Time has changed and I remember many more happy times etc - You never forget - I've had tears many times since, be it 1 week, 1 month,  1 year or years later - certain things just trigger it, like my wedding day and the birth of my daughter - But overall the memories become sweeter