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Post by Deleted on Dec 2, 2018 1:13:34 GMT
Whenever I try to contribute to this thread, my efforts end up sounding either puerile, misplaced or ill-advised. Sometimes all three! So I simply wish you the very best for the time you have. Ah, Don't worry about it, I know I find it hard to reply to people sending me well wishes. I mean, thank you all, but I feel as though I should say something more, respond better, so I end up posting little. You're doing fine.
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Post by jasonward on Dec 2, 2018 14:29:22 GMT
Well folks, I'm having a good day today, I feel OK, but physically I've had a rough few days till now, and there are no practice runs, no experience for me to base this on, but I fear I could be days away now from dying.
I have a much delayed blood test due next Thursday, it could be if I get there and they run the tests, that adjusting my drug regime will make me feel better for a while, I don't know, but tiredness, muscle ache, sleepless nights and odd sensations coming from my heart muscle are my routine now, I think I see Deaths shadow standing at my door.
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Post by Timelord007 on Dec 2, 2018 16:21:43 GMT
Then tell Deaths Shadow to jog on & do one, you aren't ready yet & we forum members ain't ready to let you go.
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Post by Ela on Dec 2, 2018 17:14:49 GMT
Jason, I think about you and your situation every day. You are going through something incredibly difficult, and you seem to be handling it with incredible bravery and grace. Wish there was something I could do for you, but all I can do is send you my good thoughts and my hope that your passage to the other side will not be unduly difficult.
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Post by jasonward on Dec 5, 2018 9:39:41 GMT
Well, I had a very scary evening, I was shaking uncontrollably, pain racing through my muscles, my temperature shot up to 39.8, apparently that's dangerously high but I felt like I was freezing, my blood oxygen saturation levels sank to 87 (normal healthy range 96 to 99), my heart was racing and I was gasping for breath.
The Doctor really wanted to send me to hospital, but Ive stayed at the local hospital a few times now, and not being dramatic about it at all, they have nearly killed me twice, they don't have the equipment to deal with a patient like me, and frankly the staff are not trained or understanding of my circumstances, I honestly thought my time was up, and if it wasn't going to hospital would make it so. In the end, and much to my surprise social services provided two workers to sit with me all night.
Apparently Ive got pneumonia again, they told me after I'd had it once it was likely to reoccur. However, I feel a huge amount better today, now, than I did yesterday, hopefully that will continue.
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Post by Deleted on Dec 5, 2018 12:21:35 GMT
Great that you are feeling a lot better today!
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Post by muckypup on Dec 5, 2018 14:54:46 GMT
My heart goes out to you buddy....... Glad you are a little better.........
Stay strong
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Post by Timelord007 on Dec 6, 2018 12:48:44 GMT
Stay strong Jason, were all with you glad you feeling a bit better today.
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Post by jasonward on Dec 7, 2018 10:20:50 GMT
Well latest developments in my on going saga, is that I eventually had the much delayed bloodtest only at 20:45 last night to get a call from the out of hour GP service to say, "your blood results are really bad, you should go to hospital" the conversation I had with that Doctor left me with the clear impression I could be days or hours away from death.
Well I've mentioned my reluctance to go to my local hospital before, because frankly if whatever I'm going to hospital for doesn't kill me, the hospital itself (through lack of facility, staff training and frankly care and empathy in some cases) will. The treatment I have received there one at least two occasions wouldn't be allowed in a prison, it would be classed as cruel and unusual. Combined with the fact that I can only be transported in an ambulance, means I become a prisoner in hospital, whilst in theory I have the right to refuse treatment and discharge myself, I can't actually do that unless transport is provided to bring me home, but the hospital does not provide transport if you self-discharge and I don't have an ambulance an staff to staff it. So when I go to hospital, despite appearances, I am a prisoner.
Apparently what I need today, now, is some intravenous water, having been given this I am told my bloods will return to normal (for me) and there's no reason I could go on for another month or more. So, I ask again, a drip is very simple thing, we've all seen them in the movies, and many of us will have direct experience of them, so why can't the district nurses do one for me at home, it would be a huge amount less stressful on me, and frankly would cost the NHS a huge amount less than me ended up in a NHS bed for a week.
So I will ask again, why I can't have the drip at home, and if I can't it looks like I might be called on to make what I find to be a very onerous decision, there is one thing thought I 100% adamant about, when I die, I'm doing here at home, where I am comfortable, where my house is my home and where things are set to my life easy, and not in some hospital bed that painful to use, designed to stop you from moving, where the toileting facilities don't work for me, full of strangers giving off their own strange noises and smells (for none UK peeps, most wards in the UK are shard occupancy, your share your room with strangers, sometimes many), where the TV either don't work or cost £10 per day to use, and being dealt with by nursing staff who see me as nothing but tiresome.
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Post by mark687 on Dec 7, 2018 10:33:28 GMT
Well latest developments in my on going saga, is that I eventually had the much delayed bloodtest only at 20:45 last night to get a call from the out of hour GP service to say, "your blood results are really bad, you should go to hospital" the conversation I had with that Doctor left me with the clear impression I could be days or hours away from death. Well I've mentioned my reluctance to go to my local hospital before, because frankly if whatever I'm going to hospital for doesn't kill me, the hospital itself (through lack of facility, staff training and frankly care and empathy in some cases) will. The treatment I have received there one at least two occasions wouldn't be allowed in a prison, it would be classed as cruel and unusual. Combined with the fact that I can only be transported in an ambulance, means I become a prisoner in hospital, whilst in theory I have the right to refuse treatment and discharge myself, I can't actually do that unless transport is provided to bring me home, but the hospital does not provide transport if you self-discharge and I don't have an ambulance an staff to staff it. So when I go to hospital, despite appearances, I am a prisoner. Apparently what I need today, now, is some intravenous water, having been given this I am told my bloods will return to normal (for me) and there's no reason I could go on for another month or more. So, I ask again, a drip is very simple thing, we've all seen them in the movies, and many of us will have direct experience of them, so why can't the district nurses do one for me at home, it would be a huge amount less stressful on me, and frankly would cost the NHS a huge amount less than me ended up in a NHS bed for a week. So I will ask again, why I can't have the drip at home, and if I can't it looks like I might be called on to make what I find to be a very onerous decision, there is one thing thought I 100% adamant about, when I die, I'm doing here at home, where I am comfortable, where my house is my home and where things are set to my life easy, and not in some hospital bed that painful to use, designed to stop you from moving, where the toileting facilities don't work for me, full of strangers giving off their own strange noises and smells (for none UK peeps, most wards in the UK are shard occupancy, your share your room with strangers, sometimes many), where the TV either don't work or cost £10 per day to use, and being dealt with by nursing staff who see me as nothing but tiresome. Shouldn't even be an argument. if you've made the Final decision and your Doctors haven't objected, haven't they got duty of care to treat you at home till the end?
Anyway Sorry once again.
Regards
Mark
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Post by jasonward on Dec 7, 2018 10:46:53 GMT
Well latest developments in my on going saga, is that I eventually had the much delayed bloodtest only at 20:45 last night to get a call from the out of hour GP service to say, "your blood results are really bad, you should go to hospital" the conversation I had with that Doctor left me with the clear impression I could be days or hours away from death. Well I've mentioned my reluctance to go to my local hospital before, because frankly if whatever I'm going to hospital for doesn't kill me, the hospital itself (through lack of facility, staff training and frankly care and empathy in some cases) will. The treatment I have received there one at least two occasions wouldn't be allowed in a prison, it would be classed as cruel and unusual. Combined with the fact that I can only be transported in an ambulance, means I become a prisoner in hospital, whilst in theory I have the right to refuse treatment and discharge myself, I can't actually do that unless transport is provided to bring me home, but the hospital does not provide transport if you self-discharge and I don't have an ambulance an staff to staff it. So when I go to hospital, despite appearances, I am a prisoner. Apparently what I need today, now, is some intravenous water, having been given this I am told my bloods will return to normal (for me) and there's no reason I could go on for another month or more. So, I ask again, a drip is very simple thing, we've all seen them in the movies, and many of us will have direct experience of them, so why can't the district nurses do one for me at home, it would be a huge amount less stressful on me, and frankly would cost the NHS a huge amount less than me ended up in a NHS bed for a week. So I will ask again, why I can't have the drip at home, and if I can't it looks like I might be called on to make what I find to be a very onerous decision, there is one thing thought I 100% adamant about, when I die, I'm doing here at home, where I am comfortable, where my house is my home and where things are set to my life easy, and not in some hospital bed that painful to use, designed to stop you from moving, where the toileting facilities don't work for me, full of strangers giving off their own strange noises and smells (for none UK peeps, most wards in the UK are shard occupancy, your share your room with strangers, sometimes many), where the TV either don't work or cost £10 per day to use, and being dealt with by nursing staff who see me as nothing but tiresome. Shouldn't even be an argument. if you've made the Final decision and your Doctors haven't objected, haven't they got duty of care to treat you at home till the end?
Anyway Sorry once again.
Regards
Mark
Am indeed inside something called "Gold Standard Framework" which is a set of guidelines designed to get the NHS to deliver the kind of palliative care that respects my wishes as I approach death, and that is why for instance, on Tuesday they provided two sitter for me overnight when I said I didn't want to go to hospital, as such I will ask again for a drip at home, but previously when I've asked for that, they said "Not possible". I don't believe that, I'm certain I've seen in done, but I have no idea how to persue that with people that can make difference, and frankly I'm not 100% sure I want to spend my last days arguing with people over the phone.
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Post by Ela on Dec 7, 2018 13:36:32 GMT
If all you need is fluids for rehydration, I don't see any reason in the world why they couldn't do that for you in the comfort of your home.
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Post by muckypup on Dec 7, 2018 14:35:21 GMT
Have you been in touch with mcmillan Charity, they will be Abel to of at the very least advice if not assistance.......
Hoping things improve......
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Post by jasonward on Dec 7, 2018 14:44:16 GMT
Have you been in touch with mcmillan Charity, they will be Abel to of at the very least advice if not assistance....... Hoping things improve......
McMillan where recommended to me at the start of this process, unfortunately they deal with cancer patients and don't offer services to patients with other problems.
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Post by jasonward on Dec 8, 2018 13:40:12 GMT
Laying in bed last night, unable to sleep for various pains and aches, I thought for this first time during this whole process "I don't want to live like this".
This morning I itch all over, several areas of skin have become hypersensitive to touch and hurt whenever anything even lightly brushes the area, I'm covered in bruises that form from the slightest impact or needle site.
I told the Doctor I saw yesterday, that I got the firm impression from the out of hours Doctor I'd talked to that my blood results meant my death was days perhaps hours away, his failure to react, confirm or deny seems like confirmation of that to me.
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Post by muckypup on Dec 8, 2018 14:00:24 GMT
I hope you wrong and it’s still a long way off....... But know that and, hope I speak for most of us that you are in our thoughts, and we are virtually holding your hand and with you on your “awfully big adventure” and “braveheart”
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Post by Deleted on Dec 8, 2018 14:08:11 GMT
Laying in bed last night, unable to sleep for various pains and aches, I thought for this first time during this whole process "I don't want to live like this". This morning I itch all over, several areas of skin have become hypersensitive to touch and hurt whenever anything even lightly brushes the area, I'm covered in bruises that form from the slightest impact or needle site. I told the Doctor I saw yesterday, that I got the firm impression from the out of hours Doctor I'd talked to that my blood results meant my death was days perhaps hours away, his failure to react, confirm or deny seems like confirmation of that to me. I suppose his failure to react could be seen in a number of ways. The natural reaction is perhaps reassurance, or alternatively, an understanding nod. But no reaction is a bugger for those on the receiving end. And when one is eager for anything, the mind dwells on that lack of a comeback. Whatever happens, I'm sure I speak for us all when I say we are all thinking of you at this time. ('At this time' - I hate that grand-standing expression!)
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Post by jasonward on Dec 10, 2018 11:03:20 GMT
Well I'm still here, although things continue to develop at a pace.
I'm OK today, but having to deal with the aftermath of an allergy to anti-biotics recently prescribed to me.
However in good news, the NHS has agreed to take over funding my care from my self and the local social services, which is great news for me, since it means the budget now exists to pay for the care I need, rather than having to have the care I can afford regardless of need.
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Post by glutamodo on Dec 10, 2018 14:19:40 GMT
Man, I would have thought you'd have had any kind of such allergies sorted by now. Ugh!
So does this open up any expanded options of home care, instead of that horrible sounding hospital?
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Post by jasonward on Dec 10, 2018 14:38:50 GMT
Man, I would have thought you'd have had any kind of such allergies sorted by now. Ugh! So does this open up any expanded options of home care, instead of that horrible sounding hospital?
The hospital things doesn't change, I would only be admitted to hospital with a view to getting better (long or short term), hospitals in of themselves don't offer care services, that's usually down to yourself, your family, social services and hospices, however, if your medical needs become the primary driver in your care needs and/or they get very complicated, then the NHS will consider taking over the funding.
The overall effect for me, is that I now know I can call on my carers when I need them, and not have to worry about where the money is coming from to pay them, it just means I don't have weight up my fear/desire/want/need vs cost. Of course it's nothing like a blank cheque, it comes to many stipulations, but if I have a need that is appropriate to the funding it will be covered, rather than the current regime I'm in which is I get a fixed budget from the council which I have to top up every week myself, and when the money runs out at the end of the month, that's it, no more till next month.
EDIT : It's to make sure that in my final weeks/days I can use the care services as much as I need and know it's paid for.
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