[ClaudetteParticipant]

Hi Helen – you mention travel insurance. My husband was insured with LV for 10 years with myeloma excluded. However they paid out 3 times for a broken leg in France, cancelled holiday because of chest infection and the extra costs when he had heart failure in France so I can recommend them if you have problems.
In the last 5 years we only travelled in Europe because of the European link to the NHS. In fact his kidneys packed up finally when he was in France and he couldn't have had better treatment.
Good luck for a wonderful trip – Claudette

[ClaudetteParticipant]

Hello Lyn, I hope this doesn't sound a negative response to your message. My husband was diagnosed in 2000 and although the next 10 years (we were only given months at the beginning) were full of stress, anxiety and for him a lot of illness we also had 10 of the most fulfilling years of our lives. We knew every day was precious so we lived them to the full. He took on new projects which seemed impossible but he completed them. We travelled as much as we could during his remission. Even after his kidneys failed we holidayed in France and he dialysed there. He died a year ago and I miss him but I have no regrets. So all best wishes for you and Pete and enjoy your life together. Claudette

[ClaudetteParticipant]

Please don't worry Jean, you were not to know. Regards Claudette

[ClaudetteParticipant]

Hi Jean
Thank you for your good wishes. Sadly my husband died a year ago after 10 years illness but I learnt so much in those 10 years.

Regards
Claudette

[ClaudetteParticipant]

Hi All My husband's paraproteins never went higher than the mid 30s. A friend had paraproteins in the 60s but his disease was/is much milder than my husband's. As others have said, paraproteins are only a part of the disease and is why we cannot compare individuals – as in everything else we are all different. The haemotologist can give the best information. Always go in with a list of questions and write down the answers. Memory often fails over the vital details.
Regards
Claudette

[ClaudetteParticipant]

My limited knowledge is that alcoholism results in reduced B12 and therefore neuropathy. B12 supplements are therefore given to alcoholics. I don't think it helps in myeloma.
Regards
Claudette

[ClaudetteParticipant]

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

[ClaudetteParticipant]

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

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