Henry Winter
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Joan Smith’s story

Henry Winter
Posted by
23 May 2013

Joan was diagnosed with myeloma in 2006

“In February 2006 just as I was leaving for work I sneezed and immediately felt my back. I thought I'd pulled a muscle and as it got worse went for physiotherapy. Initially this seemed to help but the pain increased and I was on the maximum dose of over the counter painkillers. I went to my GP who sent me for a back X-ray. The X-ray showed two collapsed vertebrae and a 'highly paretic' back, i.e. osteoporosis.

Shortly after I saw an orthopaedic consultant, who immediately arranged for admission in order to establish what was happening. I was in for a month and had every form of scan from MRI to radio-isotope to CT and X-rays. The consultant could not find the cause and brought in a rheumatologist who requested a urine test, a Bence Jones test. A month later I came to a clinic appointment to see the rheumatologist who informed me that I had myeloma. Along with majority of the population my husband who was with me had never heard of it and I only vaguely as at that time I was a GP practice manager.

Just over an hour after being given the diagnosis I was seeing a consultant haematologist and a few hours later I was undergoing a bone marrow biopsy. I was told to come back to clinic the following week with all my questions and I was prescribed a chemotherapy regime. Ten days after starting chemotherapy I felt unwell and contacted the haematology nurse who asked me to come and see the consultant. To my amazement he admitted me and the following morning it became obvious that I'd gone into renal failure.

I was transferred to the high dependency unit and as soon as a bed became available was transferred to the high dependency ward at the local renal unit. I started haemodialysis and following a kidney biopsy, was told the damage was permanent. Amazingly a few weeks later they thought that some kidney function was returning and a month later I was discharged without dialysis.

Almost a year after being diagnosed with myeloma I had a stem cell transplant. In between I'd had various infections and from the first hospital admittance in March 2006, I'd had a total of 17 weeks in hospital. As a result I gave up work and took early retirement as did my husband Mel as he found it hard to cope with running a home, looking after me and a full time job.

Just over a year after my transplant, a routine renal clinic appointment detected protein in the urine. Another kidney biopsy confirmed that this time my kidneys were failing and in September 2008 I commenced on peritoneal dialysis.

Not knowing anyone with myeloma felt very isolating and the haematology nurse put me in contact with another patient. With the support of the haematology nurse we established a support group - North Manchester and Bury Myeloma Support Group. We meet every six weeks and have speakers on a variety of topics to help people cope with myeloma, hold social events as well as doing events to raise awareness of this rare cancer.

In order to increase awareness I give talks to student nurses and those on palliative care courses at Manchester University on my experiences and I am contributing to a book too. As a result I was recently awarded 3rd place in the International Journal of Palliative Nursing 'patient of the year'.

I am fortunate that the stem cell has worked and I am still in remission. I am on dialysis each night but am free during the day and lead a full life. Prior to my illness I was very fit and did a lot of cycling and walking. Initially I was very weak and even used a wheelchair if we went shopping. However I tried to build up my strength and now do tai chi, Zumba and more recently took up cycling again, although I do much shorter distances. I also manage to get on holiday three times a year and the wonderful NHS arranges to send the machine and fluid I need to the hotel.

I feel very fortunate to have received the care I have and in the last few months I have started as a volunteer at the local hospice.

If it wasn't for the research that is undertaken looking at how best to treat blood cancers I would not be here today. I am grateful for all the progress that has been made in recent years in the treatments that have prolonged my life and those of fellow sufferers. Without that research those unfortunate enough to be diagnosed with myeloma would in effect have been issued with a death warrant.”