The following is a brief account of my journey with Multiple Myeloma. I wasn’t expecting it, but writing this has been genuine catharsis for me and hopefully you don’t find it too downbeat !
Hindsight is a great thing because when I think back now all the signs that something was wrong existed just before I was admitted to hospital. I’d been suffering from back pain most of the year but towards the end of the year I began experiencing other ailments such as skin rashes, constant tiredness and regular nose bleeds. However being a typical Irish bloke, I chose to ignore them all and expected it would all just conveniently go away. Unfortunately my life was about to be turned upside down in an instant.
It began one Sunday evening when I started having agonising shooting pains in my back and up through my chest. Thanks to my expert medical diagnostic skills gained through a First aid badge with the scouts when I was 10, I diagnosed myself having bad indigestion and reckoned I’d be grand. Luckily my wife recognised something was seriously wrong, called an ambulance and I was taken to A&E.
I was admitted and after a week of investigations and tests, the doctor who had been looking after me came to visit.
“I’m afraid it’s pretty serious” he said. No shock really, just a kind of curiousness that I had a real issue and I wasn’t imagining all my symptoms. He mentioned Myeloma, I had no idea what it was but the seriousness of my situation began to sink in. Fiona (my wife) was with me but I couldn’t look at her at the time. I didn’t want to show her how afraid I really was. He said he would be handing my case over to the haematology team.
Their doctor arrived and explained that they were pretty certain it was myeloma but needed to do a bone marrow biopsy later to prove their diagnosis. I began to wish they were still investigating what was wrong. It just didn’t seem right, I couldn’t be seriously ill?
Soon after the doctor arrived to perform the biopsy. He said it would hurt but it needed to be done urgently. It hurt. About an hour later he returned and ushered Fiona and myself into a small room nearby. He gestured us to sit down on two chairs opposite him. I remember feeling the situation almost laughable and surreal. The ordinariness of it all disguised the tragedy about to unfold for us.
He sat in front of us and confirmed I had Multiple Myeloma. He said a few details about it and briefly explained the treatment. He never mentioned cancer once. I wasn’t really listening anymore, my mind raced with thoughts. “Any questions”, he asked. None. Silence and absolute shock.
That night was the worst of my life. Along with the constant agonising back pain, the sheer horror of what I had been told kept me awake most of the night.
Thankfully within a few days things changed for the better. My consultant and his team arrived one morning soon after and within minutes I was put at ease about my illness and the treatment ahead. From that day on, I never once thought I wouldn’t get through the treatment and into remission.
During my stay in hospital, I was lucky in that I had family, friends and work colleagues visiting every day. It’s a pretty humbling experience knowing that people are worried about you and make an extra effort to drop in and check on you.
Overall, initially I spent just over a month in hospital. In total my treatment lasted for about 9 months and my recovery afterwards took a similar length of time.
My treatment schedule was broken into various stages consisting of the initial chemotherapy treatment, stem cell transplant preparation, the BMT and post recovery period. Which stage did I find the hardest? From my experience, we all handle these stages differently. I saw some people sail through the parts I found tough. For me, I found the transplant stage the hardest. However what helped me get through were the encouraging words from one of the nurses on my first day that everyone previously has got through and walked out the door at the end. I knew then I was in good hands and no matter how bad I might feel at times, I would get better.
I looked at each of the treatment stages as just that, a stage to get through. There is always light at the end of the tunnel. I’m lucky I had my wife and family to get me through. Sometimes it’s forgotten how tough it is on them, the anguish and fear they feel, multiplied by a feeling of helplessness.
Every now and again some well meaning folk tell me how brave I am. I know they mean well but I’m certainly no hero. I didn’t choose to get Multiple Myeloma and I have too much to live for to succumb now. So for me it’s a basic survival instinct all the way, together with lots of denial about what may or may not be ahead.
I did however meet a hero a few months ago while chatting to a fellow patient in the clinic one day. He’s an elderly gentleman and quite a character with a cheerful disposition. He left just before me and as I walking out to the car park, I spotted him on his own at the bus stop. A bus pulled up and he ambled on. I don’t know his personal circumstances but I know he arrived alone for his treatment, left alone and went home alone. It’s from survivors like him that I get my courage.
Here’s a line from a poem which has given me strength.
“I am the master of my fate, I am the captain of my soul“ (Invictus by William Ernest Henley)
Neal Breen, October 2015