Real Life: The Race for Life
Just over a year ago, I was at Houghton Mill with my husband and two boys, then aged 5 and 8. We enjoyed a few days of camping with friends – the usual: bike rides, boating, long walks with plenty of supplies in my rucksack. I’d done my bit with lifting and carrying bags and equipment, and happily piggybacked tired boys in the evenings.
Ten days later, I was diagnosed with multiple myeloma, a relatively unknown and incurable form of blood cancer which causes bone lesions and affects kidney function. A painful bone marrow biopsy confirmed the diagnosis and scans showed substantial damage to my spine and sternum.
I was told not to lift anything that weighed more than a bag of sugar as my spine was at high risk of collapse. My back pain had been getting worse over time, and I’d had sinus and ear infections which had taken a long time to get over. But who doesn’t suffer some degree of backache and winter viruses? I hadn’t realised that these were common symptoms of myeloma.
It was surreal. How could I be so “unwell” but feel so normal? As a 41-year-old white female, I was totally off-profile for the disease, which is more common in the over-70s, is more likely to affect men, and is more prevalent in black populations than Asian or white. Statistics aside, I didn’t know what Myeloma was. I was in total shock and the 5-10 year prognosis was hard to hear.
I started straightaway on a course of chemotherapy, with friends and family helping with my children on Saturdays and through the summer months so that my husband, Nick, could come with me to the many hospital appointments.
After 5 months of treatment, preparation for a stem cell transplant began, followed by a tense wait for a bed to become available. I was admitted to Addenbrooke’s at the end of November, determined to be home in time for Christmas.
I was on a highly controlled ward with only my husband and mum as visitors, as the risk of infection was so high for me. I didn’t feel up to talking with visitors or doing very much at all anyway, as I had to be given an incredibly strong dose of chemo followed by the transplant, which all left me very sick and exhausted. My hair started to fall out and my immune system flatlined. The initial recovery period was hard, both physically and emotionally, but I always tried to stay positive.
Seven months on and I’m in recovery for now but the cancer is incurable and will return. The fatigue comes back often and the worry of the disease rising is like a ticking time bomb in the back of my mind. I’m still receiving supportive therapies such as bone strengthening infusions, antiviral meds and a program of childhood vaccinations to reset my system and to bolster my lowered immune system.
The missing part in the medications puzzle is a maintenance chemotherapy called Revlimid, which has been proven in a largescale clinical trial to double remission time after a stem cell transplant and to significantly extend overall survival. Buying this precious extra time could potentially lead to me being cured, with the myeloma kept under control long enough for newer immunotherapy and CAR-T cell treatments to come through.
My consultant has been clear from the start that taking 10mg daily of this drug is the best route for me now, but Revlimid is not available via the NHS after a first stem cell transplant. Despite being approved from a clinical perspective, NICE was not able to accept the price tag of around £5,000 per month for 21 capsules. Generics of the drug are available in other countries, but are not allowed to be used by the NHS or commercially in the UK as Celgene has extended its patent to run until 2022.
If I was able to have this drug now, I could very likely avoid the physical and emotional trauma of a second stem cell transplant, and the NHS would avoid the cost and time of this intense, in-patient treatment which is estimated to be around £120k, plus all the pre- and post-treatment costs. I could continue to work and pay my taxes, rather than becoming so unwell that I had to rely on state benefits.
The NHS has been absolutely amazing through my diagnosis and treatments so far. I just hope that the stalemate over the cost of this maintenance drug can be overcome sooner than current Celgene and NICE plans would permit.
I had initially resigned myself to the acceptance that I would have to let nature take its course and hope that I wouldn’t relapse too soon. But my subconscious wouldn’t let it go and the worry started disturbing my sleep again and affecting my stress levels. I knew I had to be more proactive.
So I decided to do two things: to raise funds for the charity Myeloma UK, whose key aims include helping patients access the right drugs, and to start my own outreach through my blog and social media.
My younger brother Russell is on board, working his way through an incredible series of physical challenges to help towards both of these goals with the highlights including a 15,000 skydive, a 24-hour solo run @Endure24 and full Ironman in hilly Wales.
He’s profoundly deaf so he’s experienced in adapting life to accommodate a disability, but claims none of this compares to what he has seen me go through already. For the social media part, I’m going under the name of @MyelomaRace on Twitter and Facebook, pertaining to Russell’s physical races, but also the race to get the right treatments before time runs out.
My life goals have become quite simple: living well and seeing my boys grow up. Working together with Russell, we intend to do what we can to help push things forward before it’s too late.
Russell’s full list of challenges and his progress can be seen at justgiving.com/7in7forlorna