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Claudette 12 years, 12 months ago.
Thank you very much for your kind wishes. I do not fully understand this horrible disease but David has so many myeloma related conditions that his quality of life is, dare I say, almost non-existent at the moment. He has had both hips nailed to strengthen them against possible fractures, chronic
kidney failure (moving towards dialysis) osteoporosis, anaemia and bronchiectasis. We seem to be forever at the hospital for one appointment or another. He has tried to remain positive over the last 9 months but is, unsurprisingly, becoming quite dispirited after two failed treatments. Still, while there is life there is hope, as the saying goes and I am greatly encouraged by the many responses, and experience, of the users of this site. Chrissie
Dear Chrissie Im so sorry to hear David is so poorly.I just wanted to send you both a big hugx
Love
Suex
Dear Chrissie
I have just read your story for the first time and would like to offer some encouragement. My husband was diagnosed in November 2000. He was in renal failure within days and on dialysis for a few days before his kidneys kicked in again and functioned at 25% for 7 years. He had all your husband's problems and more. He had every side effect that his treatment could give him including MRSA septicaemia 3 or 4 times. He was always nauseous and in some degree of pain.
However the 10 years he survived were some of the best of our 40 years of marriage. We did all we could to live life to the full (including a very wet holiday in January in Bournemouth before his stem cell transplant). His kidneys failed 4 years ago (when we were in France, where his life was saved by the French health service)and I learnt to dialyse him at home. He died at home last December, planning his funeral the day before. Dialysis had finally failed because of the myeloma complications so he knew when he would die but still remained positive.
I want to reassure you that at the worst times there can still be hope. Make the most of every day as if it is your last so no time is wasted.
Travel insurance – we insured with LV with exclusions for all his specific conditions including myeloma, renal and cardiac problems but they still paid out for 3 illnesses – 2 whilst away and one which meant we couldn't go away. The European cover through the NHS meant we could go to France regularly hence his kidney failure there. We then continued to go to France and he was dialysed at Bayonne hospital. It was only after he had his leg amputated 6 months before he died that we stopped going abroad.
Apologies for being so long winded but hope it helps a little. I did at one point in the first year suggest to my husband's haemotologist that he should stop treatment because of his suffering but I was soon apologising for my negativity and we worked together with my husband for a further 9 years.
I wish you both the very best – Claudette
Good evening Claudette,
Thank you so much for your encouragement. Am I right in my assumption that sufferers who have had stem cell transplants do better than those who, for whatever reason, cannot have this procedure?
The other question is, when you travelled to France was your husband's treatment on-going? I do not see how we could possibly go away at the moment because David is under treatment/blood tests 3 time a week. His actual chemo is taken orally (which would not be a problem) but he has hydrating drips for the kidneys twice a week and the bone strengthening drug, Pamidronate, every fourth week. We did go to our apartment in Malta, in March, but against doctor's advice and he was in bed for the first three days. We also managed five days in Wales, in June, for our 50th
Anniversary but, again, he was very poorly after the journey and we came home early.
Like you, I also questioned the consultant regarding his treatment because he went downhill so quickly once it began and, to be honest, he has not really had many good days since. I was told, quite bluntly, that if he had not had any treatment he would probably not be here now! That was a huge shock to us a both as, before his diagnosis and treatment, he was relatively well. The whole thing began with a 'bear hug' from our son which fractured two ribs and crushed a vertebra. A bone density scan followed and he was told he had osteoporosis, then a blood test showed his kidney impairment and after several weeks, he had a bone marrow sample which revealed the myeloma. Prior to all this he had no symptoms whatsoever. It is cruel when you consider that a gesture of love and affection lead to such a horrible diagnosis, but as I am constantly telling Nick,
without that 'love hug' it might have gone on so long that it may have been too late for treatment.
Anyway as my 'friend' Tom would say, onwards and upwards!!
Bless all of you kind people for the advice and encouragement. I do so appreciate it.
Chrissie
Thank you so much Sue. I really find this site a help.
Chrissie
Hi Claudette
I am so glad you posted to Chrissie,and I am so glad I read your post,one because I hope your post gives Chrissie some strength,and two you have made me realise once Slims not on the trials any more we will be able to travel again in our campervan,go back to are way of life.I know I should just be grateful that he is still here ,but we both miss travelling so much,as it was a big part of are lives.
My husband has just asked me what I wad reading,so i read your post out to him,it makes us both realise with a little bit of luck the next ten years will be better,because you appreciate them more when you know time is not on your side. thank you again for your post .Eve
I'm pleased my long winded email has been so well received. Awful as myeloma is, Howard and I were very aware of others who died suddenly e.g. from a heart attack and left their families with shock and regrets. Emotionally Howard and I were prepared for his death for all the 10 years. Although I pointed out, when in A&E last year, that we hadn't discussed his funeral so he told me his music choices straight away. Some people found our up front attitude odd but it meant friends were not frightened by Howard's myeloma.
Chrissie – re stem cell treatment. I can give no opinion but I know many people who sailed through the process whereas Howard was so ill I did not expect him to survive – everyone is different. He then had treatment with thalidomide and had some years remission from myeloma(but with lots of complications from the treatment). No we didn't travel in the early stages because of the treatments and in the last few years trips had to be managed round dialysis. Our first holiday after SCT was a cruise so he could lie around as much as he needed. You can even go on cruises which have dialysis!
After a few years we had to stick to Europe mainland (no Canaries) in case of illness. Mind you 3 years after diagnosis Howard was on a cycling holiday in France with his brother and fractured his femur and had to be flown back (funded by his insurance). We always lived on the edge, hence the kidney failure in France. We could only continue going to France because Bayonne hospital took him on in spite of his severity of disease – Myeloma is well managed in France.
The first years are so difficult because everything is so unknown, I'm a nurse but still shed many tears in hospital car parks because of fear and frustration.
Congratulations on your 50 years together, we just made 40. Aren't we lucky compared to so many couples who don't stick it out. I told Howard I had the 'poorer' and 'sickness' bur when was I to get the 'richer' and 'health'!
All the very best
Claudette
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