Q&A with Former Patient Michael Power, he talks about his diagnosis to his recruitment onto a clinical trial to long term impact.

Michael was diagnosed in 2016 with Chronic Lymphocytic Leukaemia (CLL), and received treatment at Belfast City Hospital.

What form of Blood cancer did you have? Chronic Lymphocytic Leukaemia (CLL)

When were you diagnosed? November 15th 2016

How were you diagnosed? I was undergoing some regular physiotherapy on my shoulder following a minor skiing accident. My Physiotherapist noticed a lump on my neck and suggested I have it checked out….how right she was and I will be eternally grateful for her vigilance.

Did you notice any symptoms? I had not noticed any symptoms. I was living my life as normal, felt full of energy and never suspected there was anything the matter.

Describe your feelings when you were first diagnosed. Initially I believe I felt all the classic feelings.

Disbelief…there must be some mistake.

Numbness….an inability to process what I was being told.

Denial…this could not be happening to me, it’s only something minor.

Fear….A deepening awareness of my own mortality. On reflection I believe a bigger fear was the impact this monster would have on my quality of life.

Anger….A deep sense of outrage at this cancerous thing that had invaded my very being.

Overwhelmed….I felt out of control, unable to tackle this monster that had invaded my body and has now dictating my future quality of life and life expectancy.

Confused….I felt lost in the unknown and the unknowable.

Detachment….I found little time for that which was inessential. As I came to terms with my cancer I believe I detached from things which had previously occupied my attention, world affairs, politics, literature, my sporting interests and a curiosity around life in general.

Love…. An overwhelming sense of love for, and closeness to my wife and my two daughters.

Grief….a feeling of profound loss and grief for the things I hadn’t done, the things I hadn’t said and the opportunities that might now be denied me.

In a strangely juxtaposition I found myself grateful for a life lived to the full, for the friendships I had forged and the adventures along the way. No matter how this worked out knowing that I had loved and been loved brought a sense of calm and reconciliation.

Irony….When I took the initial phone call from my GP with the blood test results I was attending the funeral of a friend in a crematorium. The irony was not lost on me and I couldn’t resist a brief smile.

Explain the process you went through when you were first diagnosed. First port of call was my GP who said that whilst she could not offer a definite diagnosis she was fairly certain that I had CLL. She, very helpfully added that if I insisted on having cancer this was not a bad one to have!!! Her referral to Belfast City Hospital was my introduction to formal diagnosis, treatment and to the rocky road that lay ahead.

Who were you treated by in the hospital? I was treated by Dr Sarah Lawless and Clinical Nurse Laura Croan.

How were you treated? The initial clinical decision was to “Watch and Wait”. At the early stages this process was difficult to be at ease with. I had cancer of the blood and found it difficult to understand that an intervention was not happening. The medical team watched with their clinical eye and I waited in my fear and confusion. In retrospect the medical logic is clear, however it was far from clear as I travelled to my monthly appointments fearing that today is the day when I will be told that this lurking beast is on the move.

Were you treated with a trial? I had a choice of conventional treatment such as chemotherapy or participating in a clinical trial. Following consultation with Dr Lawless and her team my decision was easy and quickly made. I chose to enter a randomised clinical trial called FLAIRE. My randomised treatment was a combination of Ibrutinib and Venetoclax which turned out to be extremely successful as I am now in remission.

How did the cancer affect your life? I have experienced physical affects as a result of my cancer and the associated medication. Heart palpitations were common, a severe attack of gout and at the height of the cancer’s active period a prolonged period of lethargy and weight loss. These symptoms were expertly managed by Dr Sarah Lawless and her team. My capacity to manage was greatly enhanced and supported by the genuineness of the team, their humane responses to me and my family and the trusting relationships that developed enabling me to quite literally entrust my life to their capable hands.

By far the biggest affect on my life has been psychological. I am aware that the diagnosis of cancer will elicit a different response from each individual but I suspect there are commonalities.

My personality dictated that I seize control of this “Thing” that had invaded my body and I went on a one man crusade to beat it. All very well at one level but in my determination to beat my cancer I lost sight of those who loved me most. I isolated myself, shut off emotionally and utterly failed to recognise and acknowledge the impact on those around me, especially my wife. I became emotionally numb, afraid to face my worst fears, unable to come to terms with the fact that my life had changed irrevocably. At the time I was oblivious to the impacts of all of this on myself and those around me. It was only with professional help through therapy that I could navigate the sometimes painful journey of moving my psychological self from the damaging unknowing to the healing knowing. This journey of self-discovery and healing is ongoing, now assisted by a loving family and remains a daily task.

Can you offer any advice to anyone who has just been diagnosed? This can be a difficult, trying and lonely journey and whilst no one can fully understand what you are feeling, nor can they walk in your shoes, they can take your hand and walk beside you….if you let them.