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Myeloma Awareness Week – Shaun’s story

Myeloma Awareness Week is 21-27 June, and this year we want to make sure no one misses the signs of myeloma. Here, myeloma patient, Shaun Willcoxson-Staines, 55, shares his own diagnosis experience and how he is committed to promoting awareness of early diagnosis.

Patient stories // 23rd June 2021

I was diagnosed with myeloma in March 2018 having presented at the doctor a number of times with a back pain and a cold that wouldn’t shift.  I struggled on a for a while but eventually went to see a chiropractor. I called the doctor near the end of 2017 and was told that was very normal at that time of year and it would eventually pass. The cold did clear up but my back didn’t get any better.  I was under the chiropractor for a couple of months and I went back to see the doctor as I was just not feeling well. My GP sent me for an x-ray which actually came back with the statement ’no sign of cancer’ – which was a relief as I suspected by now there was something quite wrong.  Another couple of weeks passed and I was not looking well – tired and withdrawn.  My wife arranged for me to see a different GP who did some blood tests that were sent for analysis.  Two days later I got a call from the surgery asking if I could see the GP urgently.  As I walked into the GP’s office, I saw a form on the table marked “Urgent Oncology Referral’ with my name on it.

I was diagnosed with stage I myeloma, and I also had two compressed vertebrae in my lower back.  Clearly the initial diagnosis was a shock and I was so upset.  I did a load of reading online, most of which was not very encouraging.  But I think I came to terms with things quite quickly.  Those first few weeks were of course upsetting and especially so for my family.  But we’re a very close family and we have got through the diagnosis and treatment together. My wife, and five children have been rocks in my life, I literally could not have got to this point without them. My wife especially has done everything from coping with my mood swings, making amazing food to help build my weight back after the stem cells transplants to shaving my head during chemo as it started to fall out in clumps.  She wears the impact that myeloma has had on her very lightly.  Our children have been brilliant too.  We’re quite a robust family and we’ve all had great fun through this time even when things were tough.

When I was first diagnosed, I went straight online and did as much reading about myeloma, a cancer I had never heard of before, as I could.  And it didn’t always make for good reading either.  Life expectancy didn’t seem very promising, treatment options appeared to be limited and it looked like I was going to have a fairly uncomfortable demise.  Thankfully, I read a blog by a myeloma patient who advised that other patients should ignore everything on the internet except for the Macmillan and Myeloma UK websites.  That’s one of the best pieces of advice I’ve had.  Immediately it was possible to get sensible, well-grounded advice and I was also able to talk to other myeloma patients online.  Talking to others that have been through similar experiences has been really valuable actually as they often dispel the rumours and scare stories that are out there on the web.

Myeloma UK do an amazing job; funding research into treatment, lobbying government and pharmaceutical companies, providing information, resources and of course raising funds.  I was fortunate to live near to a teaching hospital with myeloma specialist consultants.  But I soon found that there are different views when it comes to the most effective way of treating myeloma.  My consultant recommended that I have an allogeneic stem cell transplant but that is not standard treatment in the UK and another consultant in the same hospital is very much against it.  I was able to access resources and advice through Myeloma UK to help with my decision-making process.  At one point I decided that I would like a second opinion and Myeloma UK put me in touch with a consultant at Kings College Hospital in London and their advice was very helpful. Since diagnosis, two friends have separately raised over £3000 for Myeloma UK on my behalf, one running the London Marathon and the other the Three Peaks Challenge.  Fund raising for Myeloma UK is really important especially right now as many charities have suffered considerably during the COVID-19 pandemic.

Had the Myeloma UK website not existed then I suspect that I would have initially been much more concerned about my condition than I was.  I also believe that I would be much less well informed.  Knowing that there is a knowledgeable and informed person at the end of the phone or email to help me navigate treatment options has been a great source of comfort.  Ultimately, I decided to go ahead with the allogeneic stem cell transplant and I have now been minimal residual disease (MRD) negative (absence of myeloma cells in bone marrow samples) for over 18 months.  That is the result of the brilliance of my medial team, some dogged determination and the support I’ve had from Myeloma UK.

I intend to live well, an active and happy life. Human nature is a funny thing, initially after diagnosis I had the wind knocked out of my sails but quite quickly, I managed to find some normality again and now, three years after diagnosis, I put myeloma to the back of my mind.  I am thoroughly optimistic about the future; I work 50 hours a week in a job I really enjoy.  Now that my immune system has started to recover, I look forward to having holidays and visits with my children and grandchildren.  I exercise everyday (cycling and yoga mostly), I’m planning to do the London to Paris Ride in 2022 and walk the West Highland Way again.  Trying to help others in need, I also volunteer with Myeloma UK as a patient advocate.  I’m going to work for a few more years, take early retirement and then live a long and active retirement with my wife and family.

My hope, of course, is that a cure can be found for myeloma very soon to make this particular blood cancer a thing of the past.  But for now, early diagnosis is a keystone – we must do more to spread awareness especially amongst GPs who might not see many cases of myeloma in their careers.

This Myeloma Awareness Week, don’t miss myeloma – get your symptoms checked. Learn more about the symptoms of myeloma here.