Hi..
I don’t really know where to begin. But first of all to say that i’m posting this on behalf of my brother who was , literally, struck down with Myeloma on 7th Feb this year. He’d been complaining of some shoulder pain for about a month, said he felt a bit wobbly on his legs a couple of times, but like so many men he just brushed it all off, and besides as the primary carer for our 90 year old mother, i guess he felt that just couldn’t take time off to be ill.
Then he just collapsed; completely lost use of his legs. He was transferred to Addenbrookes where initially there was some hope that they would get him walking again. But that was not to be. The shock of just going from some back pain to paralysis within the space of s few weeks has been immense, overwhelming. Especially as previously he seemed such a fit rather young looking 64 year old.
He was given a booklet on Myeloma to read at the hospital- I read it through with him- and while it was hugely informative about lots of technical details nowhere did it mention paralysis as an outcome. When I asked his consultant about the paralysis she just waved me away- ” Oh we just take it one day at a time” she said and rushed off.
I asked him what stage of Myeloma he had and he couldn’t answer, perhaps he just wouldn’t answer because, whatever stage it was, it had already disabled him. All told he was three months in hospital. He’s had radiotherapy and chemo and his condition has stabilised. But he desperately needs rehab, so that he can at least re- position himself at night, otherwise he needs to be turned every two hours to avoid pressure sores. Three times he was promised rehab- at various units and, for some reason which remains unclear, all of these fell through. Then he was told that he would be sent home and physio and rehab would come to him. This at least was better than just lying in the corner of a ward. We prepared the house, cleaned, redecorated, moved all the furniture, a hospital bed, with special mattress was installed etc- and then at the last minute, or rather the evening before his discharge- he was told that there would be no funding for night care and so, suddenly, a rehab place was found, for six weeks- with the hope that he would learn re-positioning and use of a wheelchair. Wonderful. Then two days later a pressure sore was discovered and he was immediately transferred to a nursing home. Where he is now, hoping against hope that the pressure sore heals quickly and he’ll still get some rehab and get home or otherwise he may end up permanently in a nursing home, at age 64.
I contacted The Spinal Injuries Association, in the hope that they could give some advice about how to proceed but , amazingly, they told me they couldn’t help- they don’t deal with spinal injury through Myeloma.
Currently his social worker is trying to get NHS funding- for continous care- though I’m told its pretty hard to get. Does anyone else have experience of this- have any advice?
