Have finally put finger to iPad to relate my tale of multiple myeloma, good and bad. I am well aware having avidly read this wonderful site for coming on to two and a half years without contributing how widely varied peoples experiences are. I hope this entry might help some.
In January 2012 I closed the boot on a Mini and quite bizarrely managed to break my collar bone, which was hugely painful and seemed a little unfair really. I was 57 years old, fit healthy and busy owning and running a Cumbrian hotel with my wife. Not good for the golf swing but was assured it would fix itself within six weeks and everything would be back to normal. As time progressed however it became obvious that the pain if anything was getting worse and there appeared to be no bone knitting going on, and finally a tumour began to develop over the site in May. Alarm bells ringing now and scans and blood tests revealed the multiple myeloma. It has to be said other than pain in the site itself I didn’t feel at all unwell.
And so onto chemo,thalidomide and steroids in June. Also had radiotherapy in June and remarkably within two weeks the tumour and all the pain disappeared which was an amazing relief and gave me great hope looking to the future. The drug regimen will never be pleasant, lots of sharp scratches, insomnia from the steroids and feeling ok but dragging, I seemed to be doing better than many on this site. In October 2012 had a bit of a low, admitted to A&E with a blood clot in the bowel apparently caused by the thalidomide, struggled a bit for a couple of months, but came out the other side feeling positive. The chemo was stopped then along with the steroids.
SCT at Newcastle in January 2013. Read lots about it beforehand. Bit daunted to be honest, who wouldn’t be? In my case it was ok , I wasn’t sick, didn’t feel grand but was something to get through. Didn’t require transfusions and was out again within two and a half weeks and really recovered pretty well. Officially declared to be in full remission in May so went on a Baltic cruise. Well you would wouldn’t you?
And so onto now. Was in remission for 18 months ,feeling pretty good, but a new problem with compromised ribs and a new tumour that was very painful but has just been dealt with very successfully with another bout of radiotherapy. PET scan revealed several hot spots and have just started chemo and steroids again. Don’t feel unwell but insomnia is taxing .
Looking ahead , I take great store in the fact that despite setbacks things have gone pretty well given the nature of the problems. So far the old body has withstood a few indignities and bounced back and it has to be said I would appreciate if it would continue to do so. I am looking forward to being in remission again by the springtime by which time another cruise could be due.
The care and attention I have received from the NHS in Carlisle and Newcastle, under Professor Jackson who headlines MyelomaUk has been inspirational as has been the wonderful ministrations of my wife and daughter. This condition has proven to be a roller coaster. But it is I believe harder on those that love you. Repeated remission is a distinct possibility and medical progress is on our side.
I feel good!
