This topic contains 3 replies, has 3 voices, and was last updated by 
janw 8 years, 5 months ago.
Hi,
This is the story of my husband, who I have been with now since I was 16, and the journey we have had had.
When I met my husband he was a strong tall fit man, just what I was looking for, but I never would have imagined what lay ahead of me and him as a couple.
I had been with him for just under a year when I turned 17 and he started having severe back pain. The doctors put him on tablets, which where no help. Eventually he went for an x-ray in 1993, and laid in hospital on his back for 9 months.
They thought he had a cyst eating away at his lumber 4, so they treated him with radiotherapy and put steel screws into his back, and sent him home in a wheel chair with a body cast they had made for him to wear, where he remained in it for 2 and a half years.
Every 6 moths we would go back to the hospital to see if his bone had fused enough for him to be able to stand up again and not risk paralysis. I became his carer, even though I was young. I wanted to see this to the end.
After months and months of the same thing, I had enough finally when I wheeled him onto the beach determined to not let the sand stop us as a couple enjoying the sun. But no sooner had I pushed him onto the sand the wheels sunk. He is a big muscled man, all of 18 stone (252 pounds, 115 kg), 6 ft 2 in (1.88 m).
In the end, I went to the spinal surgeon and said “Do you even know what you are doing with my boyfriend or not?” He then put his hands on his head saying back to me “No, I do not.”
With this response, I told the surgeon “I will find someone who knows what they are doing then.”
I went to the library, as I had no computer, I found a professor’s number, and hospital address, who dealt with orthopedic issues. I took my chance and wrote every week until he answered me. Finally he said he would see my boyfriend. After a visit to the hospital, he said to my boyfriend there is nothing wrong with your legs, get up. I could not believe it. All this time we had thought he would be paralyzed if he stood up.
He was then given a scan and it was found he had upper spinal lesions that where really tricky to fix again. With screws and bolts which where titanium this time, he fused a rib to the bone and made solid his upper back, but while doing this he did a biopsy to find that they where not cyst. They where in fact myeloma.
He was treated with radiotherapy again. At this point he was only in his early 20’s, I was nearly 20 and worried about not having kids and everything else that this disease entailed. But shortly afterwards I fell pregnant, and we married for better or worse.
By the age of 23 I had my second son, and once again my husband started with shoulder pain.
He went to the doctors who gave him pain relievers, but they did not work, so he had an x ray only to find out he had multiple myeloma of the shoulder and pelvis. My children where under 5, how was I to cope? I look back and still do not no how we coped.
My husband had intense chemotherapy and then went to have a donor (allogeneic) bone marrow transplant, which his only brother was a match for him. Eight weeks he went from a once again strong fit man to a walking frail ill man. I do not know how he coped, but he did cope, I vowed that if he came out of hospital I would make every memory last, and all I wanted was my kids to know their dad. We decided to go away in the caravan as many times as we could, we went skiing and did things we never felt would be possible, He became self employed we bought our house, everything against the odds, watched football matches every week as my sons where keen footballers. We walked for miles as a family on long walks as my son was always hyperactive and walking made sense.
Now 15 years later my sons are 17 and 19 years old, and I never knew multiple myeloma was not a curable disease, only treatable, until these last few weeks that my husband has had leg pain, and I questioned the blood test because they have always said his bloods are ok. I only questioned it as they kept referring to proteins, etc, which I knew my husband had 15 years ago before it turned to myeloma. But even still I thought everyone had a bit of protein as we were always told the test where normal. so when I asked the nurse to explain she said they are not normal if it was in a healthy person. Obviously your husband has something going on and the blood had been like this for a while now, but low enough to be normal for him.
I have been non-stop searching the Internet. I feel like I was so naive to think it was gone for good.
My question is why do they wait for the levels to rise? Why cannot they find a preventative drug, when they know ultimately what happens to the kidneys, nervous system, etc, while the bloods rise to a level that causes harm and needs intense treatment. I am glad I found this site as it helps me feel I am not alone, which Is what it feels like sometimes.
Today my husband is having a bone biopsy on his vertebra to check that this is not the cause of his leg pain. I feel that everything you have to push for, he is asking for a scan also, as we do not think it is his vertebra, as he has no back pain even though the steel bolts have broken. I just do not want them missing something like last time.
I would have gone back to the hospital who fixed him and ultimately saved his life, but the professor has been long retired, so I am scared of the outcome now, to trust people who seem to just like to see how things go, is just not good enough.
I will just do like I did before – live with hope, and treasure the memories and hopefully beat the odds again. I will keep you posted as to what happens. It’s hard, but it makes me realize how lucky we have been so far, from what I know now.
Good luck to everyone from Trish.
treepot. Reason: I never had a computer 15 years ago so i felt very alone, but now I have one, I can talk to other people in similar positions with myeloma
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