A diagnosis like MDS will trigger many emotions, for you and for everyone who knows you and hears. Here I will comment primarily on my emotional reaction, and how I am managing them. We are each of us unique, and will therefore vary in our response.
My first mix of emotions were largely bewilderment. I went to the hospital with a nose bleed, expecting to go home later that day. Instead they admitted me and kept me for ten days while they did many tests. I started in ENT and was transferred to hematology. I was recovering from a very bad cold / flu. There was no diagnosis offered during my stay, other than my blood counts were inexplicably low. I had a number of platelet and red cell infusions before I was discharged.
That sense of bewilderment continued for quite a few days. When I saw a hematology consultant nearly three weeks after I was admitted to hospital, they were still waiting for tests to come through, and we were told then that MDS was a possibility, but not confirmed. There was some discussion of treatment options, even transplant, but that was all.
I slowly recovered from the cold, but I was now dependent on regular platelet infusions, and every two or three weeks a red blood cell transfusion. The bewilderment switched to a sense of resignation that this was the pattern of life until a treatment plan was in place. It was a good eight weeks before it was confirmed that it was MDS for definite, and that a stem cell transplant was the best option. The weekly blood tests and infusions were to continue.
I have experienced the sense of shock of such a diagnosis for others, but I don’t recall a real sense of shock for this. It may have been the way it was slowly disclosed, or years of mindfulness practice kicking in,. Equally, I haven’t had any periods of anxiety or much lost sleep. I’ve had a couple of down days, but nothing that slipped over into a second day.
That isn’t to say I have willingly accepted all this. For quite some time I hoped for an alternative cause of my symptoms, and it was only when the chromosome tests came through it was clear that it was MDS. As I researched there were alternative explanations for my symptoms, but they all sounded challenging.
MDS has now reshaped my life and my expectations. It is at the forefront of my mind a lot of the time. We had to cancel three planned holidays. We stopped going dancing as that was too much of an infection risk. We backed out of various Christmas activities (pantomime, concert, etc.) again to avoid infection. I cancelled my gym membership. All of these were difficult and disappointing.
I’ve spent a lot of time researching MDS and trying to understand it as much as possible. Over the years I have learnt to turn towards big problems and understand them as fully as I can. That seems to be a better way of occupying my mind on the matter than fretting about what may happen. It has certainly helped in the dialogue with clinicians.
People have very different reactions when they find out they have a cancer. I decided very early on to be open about it, and talking about it in an open and matter of fact way is helpful to me. Writing this blog is helpful too. I hope that openness is helpful to others too.
And I have kept up my regular meditation practice. I have continued leading a weekly drop in meditation session which I enjoy very much. Both of these have been invaluable.
As things unfold, I am focusing on keeping as fit as I can. That takes up a lot of time and energy, and is helpful in terms of sleep and managing any anxiety that creeps in. A stem-cell transplant is on the near horizon, and that helps me keep focus.