Living with a cancer that won’t die
Sounds dramatic probably more so than an incurable cancer! So many blood cancers come under this description, you can’t see them, you can’t cut them out they are just there. In many cases people comment how well the sufferer looks unaware of the inner turmoil. For some people it means a very lengthy period taking some kind of (usually) chemo drug. For others it can mean a period of remission which can vary from months to years when no treatment is being administered. For the lucky ones this can mean a period of “normal” living although this may well be a new” normal” where you can do what you need to do and more importantly what you want to do albeit at a level of efficiency which may not match your earlier life. The lucky few go back to running marathons and climbing mountains!
Of course the period of remission is tinged by the periodic reviews with your consultant as you wait to learn if the disease has returned. You and your carer know that the return of the disease is inevitable but the tension of the reviews, waiting for the results, breathing a sigh of relief when the results are good is a difficult process. Eventually the call comes from your consultant “ we need to discuss the latest results”. That sparks a whole train of emotional responses but particularly within the carer who has, perhaps, got used to the period of remission and tried to put the temporary nature of the remission at the back of their mind. All at once the memories of the previous treatment, the worries and concerns it provoked come flooding back and arguably it is much worse for the carer who can see the burdens of care resuming centre stage again.
So how does this relate to me? I was diagnosed with Myeloma in July 2015 and started on the Myeloma XI trial. After 4 cycles I was confirmed as being in a very good partial remission. So good in fact that I went in for an autologous stem cell transplant on April 5th 2016 leaving hospital 20 days later. After that regular clinic appointments have been maintained with the frequency latterly dropping back to quarterly. In that time the remission has been maintained and we were able to do all the things that we wanted. Fast forward to July 2018 and emerged from the clinic in good spirits as the consultant confirmed that the full blood count results were”as good as it gets”. That euphoria vanished rapidly 10 days later with a phone call from the Myeloma Research Sister to say that the sensitive test, which for 3 years could barely detect any Myeloma cells, was now registering paraproteins( the key Myeloma marker) at 4.5. A month later the levels had risen to 7, still not a level to commence immediate treatment but an indicator that treatment was likely to become a real consideration in the near future.
So you understood when you started the whole process that the cancer wouldn’t die, that it was incurable but that doesn’t prepare you or your carer for the reality that further treatment was on the cards, the only unknown being exactly when it would need to start. The memories flood back; the mood swings caused by the steroids, worrying about the compromised immune system, the modified diet requirements, the impact on daily routines and future plans. For the patient the thought of more bone marrow biopsies, the regimen of new tablets and worries about side effects.
Although there is an underlying inevitability about the whole process, that in no way diminishes its impact on you and all around you.
So how do you cope? The cancer won’t die, not today or any day. Everything is geared up to achieving a new remission which has the potential to be even shorter than the one that has just gone. But new treatments continue to appear, more research is high lighting new avenues to explore but the “cure” remains elusive. Against that background all you and your carer can really do is live for today and try and plan for tomorrow but just ensure that all your plans are flexible and capable of adjustment! You cannot dwell on what might be to come – your focus must be on people and interests around you. Too much introspection feeds the disease. You can always make a log of the number of times that you will be told to “be positive”. An admirable sentiment but far more difficult to achieve in practice. However you can live with a cancer that won’t die; it’s not easy but it can be done and you can continue to enjoy yourselves.