Hello to you all…
I have found myself reading so many of your posts on here for weeks, maybe months and it's lovely how much support you all give to each other. I now feel that I could do with some of your shared support – I'm finding things really tough! Here is our story…..
My name is Kerry and am 37 years old tomorrow – it's my 39 year old partner Melvin who has MM. We have been together for 17 years and have 3 beautiful children, 15 year old daughter and identical twin boys aged 11. Our journey started 15th December 2010 when Melvin was diagnosed with a Solitary Plasmacytoma and fractures on the L3/L4 vertebrae after collapsing while doing a routine gym work out. This was followed by 30 sessions of radiotherapy which seemed to do the trick. We were then seen by the team at the hospital every 4 weeks to have bloods checked etc with no treatment until things started to change in February of this year. During the 'smouldering' phase, Melvin did notice more bone pain in his back and ribs and started taking Gabapentin pain relief, however his protein levels didn't rise much at all – so no treatment was necessary. In August of this year – Melvin was admitted to hospital with fractures to the ribs and shoulder. It was then decided that Melvin was to start chemotherapy Myeloma XI trial, RCD arm which commenced on the 4th September 2012.
During the night on 9th September, Melvin had sudden indescribable (as he put it) pain down his legs and back and couldn't weight bare or walk at all. After a 999 call, we were taken to hospital where they tried to manage the pain – eventually relieving him for a couple of hours before coming back with the same force. Melvin's stay in hospital lasted 4 weeks in total with CT scans, MRI scans, Bone marrow biopsy etc etc. The final outcome was that they found that Melvin's L4 vertebrae and pedicals (the legs that support it)had completely collapsed due to the disease and his spine is unstable. He also has spinal cord compression caused by this. He was put in a spinal bed for a few days and later fitted with a spine brace that he has to wear if he sits up.
Melvin is now at home and is currently half way through the 2nd cycle of RCD. He is unable to walk around due to the spinal cord compression – the most he is able to do is walk to the toilet while using the brace.The rest of the time he has to lie flat on a 'new' bed that we now have. He is taking MST twice daily, Gababetin and Oramorph for pain management which does help. We are waiting to hear from the Neurosurgeons at the QE hospital in Birmingham to see if they will be able to operate at this stage but it seems unlikely at the moment due to the Myeloma being so aggressive in the spine.
My Melvin has always been such an active and sporty man and it's heartbreaking to see that he has lost so much independence. He is off work long term which is awful for him. We have had so much equipment delivered to our house…so so much. Which, yes is helpful but it makes everything seem so real – if you know what I mean?? Melvin is getting depressed, as am I although I am trying so hard to push myself to keep it all together for our family.
I just don't know what the future is going to hold! I'm worrying about everything…! Everything has happened so quickly!
I would love to hear from some of you…and I hope this finds you all as well as you can be.
Love and best wishes to you all and thank you for letting me release some of this pent up frustration in this message.
Kerry xx
eve 12 years ago.
