what is multiple myloma - my story
If your like me and have never heard of this horrible type of cancer here's some information
My story
' This cancer started with a bad back (which the GP palmed me off with pain killers for months and months even tho my mobility was declining and fractures had shown up on my scans + this was not investigated by the professionals!! The doctor failed me ! Big time and this is now with a solicitor
In December I ended up a and e after a blood test I had anemia and my kidneys were failing and I had too much calcium in my kidneys
Spending several weeks all over Xmas in hospital being moved about I was finally sent to the cancer unit in Canterbury treatment was started very early on tablets and injections in my stomach I could barley walk I couldn't lay flat the worst thing about this is having cancer is bad enough but loosing your mobility is heart breaking not being about to wash or dress yourself I was barley able to feed my self when you go from being fully mobile to that it's life changing
Prior to going home they do a stair test with you I couldn't do the stairs and to this day still can't do a flight of stairs yet
I spent all of Xmas in hospital missing out on my son's Xmas although they visited me in hospital it was heartbreaking not having that special time at home with my family and being too sick to go home
I remember when I was allowed to go home I had a bag of medicine the size of a child I was so weak but so excited to be going home to see my boy. At this point I was very hunched over my head was dropped to the left I didn't know if I was going be ok if I was going to get better if I was going to be able to be a mum to my son run my home
Chemo was intense I was at viking day unit 3 times a week for blood tests and chemo which consists of injections in my stomach viking day unit is an amazing safe place the staff go up and beyond your welcomed in and it's a safe haven for those with cancer the staff treat you with respect and dignity they support you when you cry and laugh with you they are there for you a hundred percent I cannot fault the care and service I have received from the staff and consultant there I was lucky and didn't have any adverse effects from the chemo the chemo made me feel better being told the chemo has worked and your body has responded excellently to the treatment is the most overwhelming thing ever this was the first time I thought im not going to die because untill your told this you just don't know
I've had physio and I'm now able to get in a bath with a bath lift and support from my mum, I have a hospital bed and needed support to lift my legs in and out of bed (I can now get myself in and out of bed ). I mobilize with a Zimmer and my legs and back and are getting stronger but it's a slow process I walk with a hunched back and can't walk far. I'm trapped in my flat as I can't yet walk down the flight of stairs ( physio work is soon to commence around getting down the stairs) the only time I leave my flat is when I'm at hospital G4S hospital transport collect me and either carry me or use a special chair to get me in and out of my home. This is very damaging not being able to just go out for a walk or to the shops or take my son out go to school events etc etc to go from doing what you want when you want to being so restricted because your body is damaged from the cancer - but every day I move I do my exercises
I can now lift my own legs to get in and out of bed and the bath with support feed myself and cut up my own food, I can now partially dress myself and wash myself so progress is being made it's just slow and one day at a time
I've cried but I've had a good strong head you have to just get on with it!!
I've now finished chemo for now but still have a monthly infusion of bone strengthener, I was in a plastic back brace for months and this is now finished although I have an appointment next week at stanmore orthopaedic hospital so who knows what will be suggested next. I've been and had my cells harvested for a stem cell transplant my cells have currently been frozen as I'm not yet strong enough for the procedure. I'm now having some posture physio work done with me to build up the muscles in my leg and back once I'm strong enough I'll be able to have the rest of the procedure and have my stem cells put back in once they've been cleaned this will hopefully prolong the time before the cancer comes back. Multiple myeloma isn't curable it's something that's managed with ongoing medication and I've been told it will come back which is scary but at least I know what to expect the second time round
Our lives have been turned upside down my mum has been my carer my little boy having to see mummy so weak although I'm getting stronger every day. I can't wait till the day comes where I don't have to hear the words sharp scratch yet another blood test or an injection and another r cannula and another drip another procedure to go through my body has been through the mill but being a cancer patient I have had the top consultants in London looking after me I've received the best care
I don't feel sorry for myself I'm angry at the cancer I'm more angry at the impact on mobility and how damaging it's been i hope in time I am able to walk freely without a Zimmer to be able to get downstairs leave my house walk my dog take my son out do the normal things that people do. I'm lucky to have my mum who has help manage my home my aunty who has been a great support and a hand full of good friends it's been hard but my god I'm still fighting
Fuck you cancer !
'

well thats me above not that i feel like her anymore, the csncer has distroyed my mobility i currently use a waling stick and zimmer frame and the specialist at Stanmore orthpoedic hospital told me my back could not be operated on due to all the danagebin my back
he also very bluntly told me my frame would. not change so ill now be a hunchback - looking at the new me in the mirror is discusting i look horrible i think id rather loose a boob but. hey ho i get to loose my mobility and frame below you can see what i mean

this is me now sad times but dont feel sorry for me im still alive im moving although the progress is very slow im now mobilising quite well with walking aids. You would not think cancer can do no this but i guess having multiple fractures in my back and chest has caused all of this. in the begining i could barley move i had to wesr a full upper body brace - This was a large plastic uncomfortable restrictive brace which was worn for hours. i can say i hated it !!
Going fom being fully mobile enjoying days out with my son and long walks with my dog its been so hard and i cant express how frushtraiting it is not to beable do the things you could beforeis very help wahing an dressing, needing all my meals cooked for me annd i cant even leave my house currently but i am relearning how to get down the stairs so hopefully ill get there my goal is to get to my mobility scooter and get some fresh air. as you can imagine being trapped for 8 months no freedom to come and go or do what you want its tourture i tell you
when you loose your mobility you loose yourself and your independance - anyone who knows me knows how independant i was and to need someone to cook or help me in the bath etc is so hard to accept but I'm engaging in physio to make me stronger and although ill always have a hunch back my back and legs will get stronger. im working hard with stair work and they have said by nect week i shouldd be walking down the flight of stairs which is amazing its just the coming back up which is much more difficuly and knackering but ill keep you posted
ingbin physio
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