In the past two weeks I have learned about the deaths of two people I knew from Myeloma. These deaths hit me very hard because I too have Myeloma. Myeloma is a cancer of the plasma cells of the bone marrow for which there is currently no cure.
I was diagnosed in January 2007. I was 38 at the time. The majority of people who get myeloma are over the age of 65. I was one of a rare breed of people who get myeloma whilst under the age of 40 – only 2% of those who get myeloma are under 40.
At the time of my diagnosis they did not really talk to me about a definitive prognosis. With myeloma there are no guarantees. A lot depends on how I respond to treatment. There might be remission. The remission might be a few months or a few years. There will definitely be a relapse, maybe even a few relapses.
Myeloma is not curable but it is treatable. But people still die from it or from complications associated with it and I am sure that I will die from it too – one day.
The news of these recent deaths have me using my calculator, working out how many years these men lived for after their myeloma diagnosis and trying to work out how many more years I might have. I know one man who has had myeloma for 21 years and is doing fine ( well as fine as you can with something like myeloma). I know a woman in America who has been living with myeloma for more than 14 years. I know another man here in Ireland who has been living with it for 15 years. I used to be able to quote the myeloma years of these two men who have recently died, but sadly I can’t anymore.
So my calculator has been out because I am not very good at Maths, not this type of maths anyway.
My children were aged 2 and 9 when I was diagnosed. Now, five years after my diagnosis, they are now aged 7 and 15. I don’t ever want to leave them. I don’t ever want to be faced with the fact that I will no longer be around to be their mother.
So today I have been scribbling sums, based on some of the myeloma years and numbers I know:
- Another 5 years will mean my children would be 12 and 20 which would be wonderful
- Another 10 years will mean that my children would be aged 17 and 25 and that would be just indescribable.
- Another 15 years will mean that my children would be 22 and 30.
I daren’t dream after that.
All I want is to be around to see them growing up into the wonderful young adults I know they will be.
I want to be around to help my daughter choose her dress for her debs, to help her with college choices and to nurture her wonderful writing talent.
My son is so little, he has so much more growing up to do and I really want to be around for all the milestones that he will go through over the next few years: First Communion, Confirmation, Secondary School, his first love.
So I am doing the numbers and they are not very easy numbers to do.
I have had a successful transplant and I am well. I am off all treatment. I am checked every 8 weeks and so far so good – the myeloma is at bay. I am hopeful that someday there will be a cure. I really hope we get a cure so families can be spared the trauma of living with myeloma.
It’s very hard to live in the shadow of myeloma. It’s very hard to live under the shadow of any cancer. It’s very hard to hold onto dreams. But, where there is life, there is hope. I have hope. Sometimes it is hard to hold onto hope. Sometimes it is just very hard ……..
This week is Myeloma Awareness Week in Ireland. Please spread the word about Myeloma and if you can help in any way with our work and with raising money for research then please email email@example.com
June 21, 2012