Hi, my mum was diagnosed with MM in May 2014, following a vertoplasty procedure to her spine in March. The day before the vertoplasty my dad suffered a stroke so both my parents were being treated in the same hospital at the same time. Thankfully, dad made a remArkable recovery but suffers extreme tiredness and fatigue.
I have no idea where the inner strength comes from to support my parents through this emotionally and physically draining time and I’m devastated at the impact this awful disease is having on my mum. For now we, as a family, are taking each day as it comes and feel comforted in the knowledge that mum is being cared for by a dedicated haematology team and palliative MacMillan specialists.
I think sometimes it is even more difficult for the carer than the patient. I know my husband told me I was quite obnoxious while on steroids, but I just thought I was telling it like it was! It must be awful to be told your loved one has an incurable cancer but I think I was so involved in getting through the treatment and the side effects, I just had no strength left to deal with his issues. Thankfully 15 months later he is still around and I am (so far) 5 months after transplant in remission. Let’s hope it lasts!
It’s a sad fact this disease has a massive impact on all family members,most people know there is something wrong but when it’s diagnosed it comes as an awful shock,I think it’s because there are so many different symptoms,either bad backs,or broken bones,there are only 3000 cases a year in this country,then you get the different types of Myeloma,I think there are about6 but some are harder to treat,although the treatment is the same more or less for everyone,
It’s worth getting in touch with Ellen or Maggi on the free number,because there is so much to take in??? It’s a big learning curve,we call it a roller coaster!!!!,so welcome to the Myeloma roller coaster,I never liked them specially this one,but have got use to the ride with all it’s ups and downs.
Make sure your Dad takes things easier,because it’s not a small illness,we are 3 1/2 years into it,it’s a long journey and it effects everyone.
Carol I think everyone is effected by the steroids,and you are right in saying,you as the person going through the treatment,cannot take the carers pain on board, it was so hard to watch Slim changing into someone who had real issues and could not see it was because of the steroids ,but you do find away round it,even if it’s just going for a walk for 5 min..
Welcome Denise,I hope you find this site informative.Eve