It seems extraordinary to me but it is over a year now since I was diagnosed with Myeloma on the 19th October 2018, my first chemotherapy session was on Nov 5th 2018, these are dates and experiences that I am unlikely to forget. The diagnosis was delivered by one of the consultants at KCH London where I had all of the tests; despite the fact that it was not a complete surprise and that the consultant was extremely sensitive the harsh reality of the news still felt like being pushed under a bus. In contrast my first day of treatment felt cathartic and empowering; the fightback had begun.
Over the 12 months I have completed 9 cycles of chemotherapy and most recently the stem cell transplant; not to mention countless tests and scans for just about everything. The good news is that apart from the Myeloma and the side effects of the treatment I am a picture of health!
So it now seems like a good time to reflect, try and put everything in perspective, and sum up where we are now.
Progress: There have been ups and downs but in general I have responded well to the treatment; my key cancer markers have all fallen significantly during the year and I await the first set of test results after the transplant. It is now about 80 days since the transplant and in a few more weeks my bone marrow will have ‘settled down’ sufficiently to be retested with a biopsy. Myeloma starts in the plasma cells within the bone marrow so this will be the acid test of how successful the transplant has been and will determine what the next steps will be. If the residual disease is minimal then I will probably receive maintenance therapy on an ongoing basis to keep on top of it but if the transplant has worked less well then ‘consolidation therapy’ will be recommended to try and improve the overall response – more chemotherapy, probably with some different drugs in the new year. So these test results in mid December are pretty important and we will be getting increasingly nervous nearer the time.
Physical status: A year ago I felt fit and well, while the Myeloma was extremely active it had not reached the stage of causing any symptoms, so I faced the unusual situation of knowing that the treatment would most likely cause me more problems than I had experienced with the disease. While there is no doubt that the treatment regime has taken it’s toll I have been fortunate that my system has tolerated most of the drugs pretty well. The only major side effect that remains a problem is the nerve damage caused by one of the first chemo drugs, known as peripheral neuropathy my feet and hands still have numbness and tingling with some muscle weakness. This should improve over time and I am learning to manage it better but it’s a big frustration to say the least.
Aside from this the recovery process from my transplant is going well and I am feeling stronger all the time – my walks are up to about an hour long now and the exercise bike gets plenty of use. I have been very careful to avoid crowded places such as public transport and the office as my immune system is still recovering but the consultant has now advised that I am strong enough to get out a bit more and we are hoping to take a holiday in December. The hair loss and weight loss have changed my appearance somewhat, it’s been one of the most effective slimming regime’s that I have ever tried, I am now about 80kg compared to 86kg a year ago. At the risk of ‘oversharing’ on the hair front I was a little surprised to lose most of my hair from everywhere, not just my head, with the exception of my eyebrows. I look a little bit like an Action man (minus some of the action), at least I am saving money on barbers and waxing!
Mental status: Importantly I have managed to maintain a positive attitude at least most of the time. As I mentioned in one of the early blogs the key to this for me is knowledge about the disease and treatment and building a sense of control over the situation. Our relationship with the consultants has been excellent, they have been very positive all along and this has helped enormously. However for me personally I must say that the most important factor has been the influence of family and friends giving me so much support and so much to look forward to and work towards. Being in this predicament makes me realise how much I still want to achieve and experience in life and I remain determined to do just that. I have also learnt that despite some very difficult times over the past year it is still possible to enjoy life; if anything the good moments can be treasured even more with a heightened appreciation for the value of experiences and friendships.
The way I feel about my illness has shifted a little over the past 12 months; as time passes and acceptance grows it feels much less like a win/lose battle and more a case of how best to contain and control the disease. As things stand there is still no cure for Myeloma and even if I achieve a very good remission it will return at some point in the future. So the Black dog needs domesticating and controlling rather than kicking out altogether, at least for now anyway, the billions of research dollars being spent to find a cure and new therapies like CAR-T* promise a much better future for Myeloma patients. On the subject of the Black dog it has been interesting to learn that other Myeloma patients often have nicknames for the disease that I have picked up from some of the social media groups – the ‘bad-boy’, the ‘beast’ and the ‘bitch’ are good examples, some are less subtle.
*Its complicated but I will try and write about it in a future blog!
Progress in understanding Myeloma and 9/11 Firefighters: The research billions are not just yielding some promising new drugs but also producing interesting theories about some of the causes and triggers for Myeloma to progress. Genetic research is starting to help in terms of identifying risk factors and also to raise the prospect of more individually tailored treatments and other studies seem to suggest that environmental factors could increase the risks of developing this and other cancers. One study that I found particularly interesting looked at the incidence of MGUS (the benign precursor to Myeloma) in 9/11 firefighters who were exposed to high levels of toxins and diesel fumes during the 10 month rescue and recovery work in 2001. Blood tests show that the sample of 781 white males firefighters had almost double the chance of having MGUS compared to the control sample of firefighters who were not involved – 7.6% vs. 4.3%. The group of 9/11 firefighters also showed a higher incidence of other cancers.
This is fascinating but also raises another question for me; while it has not been definitively proven there also seems to be a probable link between stress and Myeloma (and other cancers). These same 9/11 firefighters were clearly exposed to extreme levels of stress and many suffered from Post Traumatic Stress Disorder. The International Myeloma Foundation puts forward an interesting view on stress and Myeloma commenting that ‘Stress can be a very destructive force when it comes to myeloma. Stress really disrupts the immune system and myeloma is a cancer of the immune system.’ It seems to me that it is very difficult to differentiate between these potential causes and their effects but studies such as this can only build knowledge and offer great hope for those of us with the disease.
9/11 Firefighters at Greater Risk of Multiple Myeloma Precursor, Study Reports
Rugby: On a lighter note the Rugby World Cup was a great distraction while I was recovering from my transplant and I watched nearly every game; some more than once. The final was obviously a big disappointment for England, particularly after the amazing win against NZ in the semi, Fiji also let me down so apologies for the awful tip! Thankfully the early season results for the Bristol Bears have been tremendous including a thrashing of local rivals Bath and a narrow win away at Exeter. It’s early days but we are top of the Premiership and have won both of the European Challenge Cup games; Up the Bears!
Most appropriate quote of the year: ‘Come what come may. Time and the hour runs through the roughest day’ Macbeth wonders if he will ever become King. Act 1, Scene 3, William Shakespeare.
Most appropriate book of the year:

As mentioned above my test results in December will be important in determining the next steps for treatment in the new year and I will update with the outcome in the next pre-Christmas edition of the blog. In the meantime I will leave you with a caption competition to think about…..

Scott.