Elizabeth writes. Since March, Paul became increasingly more poorly, both physically and mentally. Elizabeth decided it was not safe to leave Paul unsupervised, and so the couple became housebound together apart from 2 occasions weekly when carers came to be with him.These were extremely difficult times for them both. On 14th April, Elizabeth awoke to find Paul unconscious on the floor in the lounge. He was immediately taken to The Royal London Hospital in Whitechapel. He had suffered a huge bleed into his brain, and he never regained consciousness. The staff were wonderful but there was nothing they could do. He died peacefully on the 14th April. Elizabeth is hugely proud of her Darling Paul, that he had the courage to keep this blog, so others can read and maybe gain some comfort and understanding of Myeloma and what and how it affects families.Elizabeth writes this in honour of Paul’s son Simon who is following the same Cancer journey.Rest in peace my Darling Paul. I love you so much.
The last month has been a very hard one. I’ve been admitted to hospital on one occasion for three weeks mainly to give Elizabeth respite and to sort me out at home. I’ve now got a hospital bed, a hospital chair and various other items of furnishing. I’m being looked after by district nurses and health visitors who are doing a good job. I feel that I can no longer give my time to Fairways (our flat management company) and have therefore decided to resign from the post of Chairman. There seem to be no signs of any improvement and I am intending to live as each day comes. I am having lots of help from family and friends who are doing lots of little jobs for me and Elizabeth as I am basically housebound.
2011
Happy New Year everyone. I was seen at UCH last week and they have discharged me as there is nothing more they can do to treat me. I’m now under the care of my GP with input from the District Nurses and Macmillan Nurses as and when required. I don’t expect much to be happening in the foreseeable future so will cut down my blog to once a month. I hope you all still get pleasure from reading it.
Happy Christmas everyone. I’m much the same as last time except I’ve now got compression bandages on my swollen legs which are helping. I’ve also got the Macmillan nurses involved but I’ve not really changed in myself. I’ve still got no energy and am so grateful to Elizabeth for all that she does.
Not much change except that my chest infection seems to have cleared up. I’m still continuously tired and because of my swollen legs and feet walking is extremely painful plus it makes me very breathless. There’s not much else to tell as not much else has been happening.
After my course of antibiotics I had to get my GP to call again as there was no improvement. She prescribed a further course. I also had to phone UCH as the side effects to the Revlimid were getting worse. They told me to stop taking it and they would review me at my next appointment. My appointment was yesterday and my doctor discussed possible ways forward. Any further chemotherapy includes new drugs in combination with drugs I’ve already had side effects from so there is no further medication they can give me for my myeloma. I asked what this meant in terms of a prognosis and it means I will get slowly more ill until I pick up a big infection which I can’t deal with and that will be that. She said we are talking in terms of months rather than years. Incredibly depressing news for us to deal with.
Recovery can be such a slow thing to happen. I feel that I’ve hardly moved forward at all. I had to get my GP to visit last Friday as I felt so unwell and, after listening to my chest she decided I needed some more antibiotics. I still have absolutely no energy and just walking to the front door takes all my effort. Yesterday was the fifth anniversary of my diagnosis so I think I’ve done well to get this far as at diagnosis the consultant gave me three to five years.
October has not been a very nice month for me. I continue to slowly recuperate but I feel it is going to be a very long process. Every day I need oxygen for varying periods of time as every exertion causes me to get breathless. I’ve become very reliant on Elizabeth to do a lot for me for which I’m very grateful. We managed to get to UCH yesterday to see one of my team. My blood results were good and she wants me to continue with the same treatment. I shall know my paraprotein level next week. She also said recovery from pneumonia will be a long process but was also extremely happy with some news I had to give her. Those who know me will also be surprised by this but, since I became ill four weeks ago, I’ve not had a single cigarette. WOW !! I pray that I can keep at it.
My apologies to those who are regular readers of my blog. You must be wondering what happened last Friday. I had my blog done and all ready to publish when things took a dramatic change. If I had published what I had written you would have seen this. -
There’s not been much change in my health over the past two weeks with the possible exception that my peripheral neuropathy has slowly but steadily got worse. I’ve also been having a lot of hot sweats on an almost daily basis. We were in town yesterday to see one of my consultants and he was happy with my blood results on the day. He would also like me to continue with Revlimid unless I feel that my neuropathy is becoming unbearably worse. I was happy for him to proceed with this plan of action so it’s Revlimid and high dose steroids until I’m seen again in four weeks or anything changes significantly.
About 3.00am. on Friday morning I had an acute episode of diarrhoea followed by acute shortness of breath. I struggled through Friday and eventually went to bed after having a very bad day. By 3.00 Saturday morning (I had been using oxygen all day Friday) I was really struggling for breath and felt someone else had to take over. I was getting quite frightened and telephoned for an ambulance. I was in A & E very shortly being attended to by medics. I was then admitted and started on various treatments including antibiotics and steroids. I was diagnosed with acute pneumonia and have been slowly improving to the extent that I was discharged yesterday evening. I still have a way to go but its nice being back home. After all of this I might not be up to another blog this week so don’t worry if one is not forthcoming.
My paraprotein level has fallen again, not by a lot, but at least it’s moving in the right direction. My nausea and vomiting remain very stable which is nice. The weakness in my legs and hands is getting worse but I think that is something I’ve got to live with. Some days I feel really ill in myself and that is not very nice. I feel very weak and lethargic and just don’t want to do anything. I’m getting more reliant on Elizabeth for help with showering and dressing and I’m so grateful for all that she does.
