Its now two and a half months since my husband was diagnosed with multiple myeloma.
They were very dark days with many black thoughts. Peter had developed nephrotic syndrome, In June he had a kidney biopsy for his failing kidneys and I thought that was bad.
Then he was discovered to have two crushed vertibrae, eventualy he was diagnosed with MM and I/we thought the worst. Things are much brighter now. He was on massive doses of morphine for his back and steroids for his kidneys as well as 'water' tablets by the ton for his water retention. then he started on all the MM drugs. CDT therapy. OMG the quantity of tablets he was taking in a week was sooooo worrying. I constantly worried that he would forget what to take when and those tablet cases would not hold them all he had to have two seperate ones for his kidneys and chemo etc in addition to drugs for a double heart bypass.. I could not see an end to medication in such quantities.
Now his kidneys have sorted themselves out, so no more kidney drugs, his radio therapy has finaly kicked in on his back and he now takes small quantities of paracetamol and diazipan. Very occasionaly he takes the odd morphine 10mg for desperate pain. But on the whole he is much better. Given what he is coping with. In two days we go to see the 'bone' man and with luck he will have some type of operation to gain some height that he lost with the crush fractures in his back. His biggest problem is the lack of space between his lower ribs and pelvis which means his organs are all crushed into a smaller space.
He is far from being his former self, weighing 4 stone less than he did, but finaly gaining weight instead of steadily losing it. He has endured chest infections which kept him in hospital and walking with two stick, and unable to get in and out of bed, or turn over in bed. for now he is moving forward on this dreadful journey, Finding it difficult to move about but quite frail still. But for anyone out there going through the same or similar problems, I would say dont give up.. It is a very hard journey and frought with dangers and worry. But do as the doctors and wonderful Macmillan nurses and staff tell you, Find out all you can, and fight for your life.
The hardest thing of all was the lack of income and the fight for benefits and tax rebates whilst trying to maintain a good diet which he could not eat. Many many forms to fill in and phone calls to make. Insurance company,s who would not speak to me when he was desperatly ill or drugged to the eyes on morphine and gabapentin and unable to think let alone string two words together. you have to be incredibly resiliant to cope with all this; and I remember thinking i wanted to run away and come back when I could better cope with all of the problems associated with this dreadfull disease. That seams so long ago now and life is a lighter shade of grey; The winter weather worries the hell out of me knowing that all those bugs could bring him to his knees with is reduced ability to fight infections. Good luck to all of you who are bearing the cross of life with this dreadful cancer. The online world has helped me keep my sanity whilst goading and cajoaling him to keep on keeping on. Without the online communities i think I would have gone mad and I thank you all for your contributions so far.
