Hi louiseb!
Receiving any cancer diagnosis is a life changing event and for us suffering from the various effects of Myeloma, often missed by Nurse Practitioners and Doctors alike. As a few have said, sometimes it takes hospitalisation, or numerous visits to the Doctors before it is spotted. Personally, I think that you are one of the more fortunate ones, as it appears to have been caught early. Mine was the latter and after several visits to my Doctor and a Chiropractor (!) I was told by a Nurse Practitioner that I had an appointment to see a Haematology Consultant as “it appears that you have Myeloma.” When I asked what that was, I was told “it’s a cancer and you can look it up on the internet!” I suppose shock stopped me complaining about being told in this manner, although my Consultant and MacMillan Nurse were not impressed!
I’m pretty fortunate (?), as I’m older and have dealt with a few upheavals. My Grandson was a one-year old, when diagnosed with Lymphoblastic Leukaemia and we fortunately rang the bell’ in May of 2022, after a four year battle to beat it! This was the same year that my daughter was diagnosed with breast cancer, two weeks before me being told that I had Multiple Myeloma. Like you, she had two children at primary school.
Anyway, when to tell your loved ones is always difficult and a personal choice. My wife (my rock!) and children were told that I had Multiple Myeloma and my grandchildren, that I was poorly and would have to go to the hospital. They have all coped reasonably well with this, given what they’ve gone through too. I did promise to be open and honest with my children and tell them exactly what was happening and treatment wise, when.
Referring to your possible treatment; I was given two cycles of VDT-PACE (intensive chemo’) before I had my SCT. These involved two hospital stays of around a week. For me personally, being hooked up to an IV for around 96 hours was a pain, as it limits what you can do. As for the Autologous SCT; if you do receive it, you will have your Stem Cells harvested (a few six hour sessions of being sat in a chair) and then a hospital stay in isolation for three weeks, or so. I received mine in Nottingham City Hospital (they were fantastic!) and allowed patients to have a limited number of visitors at set times and I was fortunate to be out in about three weeks.
So, after my lengthy diatribe! Yes, living with Myeloma can be difficult, but please never, ever, give up, be strong and remember that new lines of treatment are constantly being discovered. Also, this forum and those who like me, have had some treatment and lived with Myeloma in its various guises, will always help whenever they can.
Myeloma UK is a fantastic Charity and their sources of information outstanding, so please make use of that too.
Pedro
