I must apologise for my radio silence. I signed off my last blog entry ‘to be continued...’ Well, sorry guys, I didn’t think it would take me 10 months to get back to you. You see life has been a bit busy of late. From a blog that started out documenting a new drug trial, it quickly became clear that a MINI Bone Marrow Transplant (just chemo, no radiation) would be on the horizon. I had prepared myself for that and was ready to hit CML head on so I could move on with my life. Well what happened next really took the biscuit... (I would really like to swear as the word ‘biscuit’ just doesn’t seem to cover it.) so I will update my blog over the next few weeks with what has happened these past months.
Let me rewind to the very next day after my last blog entry, 10 months ago, Friday 29th April 2011, the second consecutive 4 day weekend to celebrate the wedding of Prince William and Kate Middleton.
My Granddad John had been taken into hospital. He had been fighting lung cancer and was admitted with a possible infection after his chemo and radiation. My family and I were straight in the car to see him on Friday. He was on a general ward looking strong and ready to get out of there. He was on oxygen to help him breathe, but overall he saw this as a blip in his recovery and was fighting it all the way. He was off his food but we went to get him a milkshake from McDonalds to get the calories inside him. He lapped it up. We were joking around that we would be running a marathon together next year. It was very hard for me to see my Granddad in a hospital bed, but after speaking to the doctors they reassured us that he was a strong man and that he was being treated for all possibilities, (likely pneumonia or a blood clot) until the tests came back to confirm what they were dealing with. Early evening we all hugged goodbye and promised to visit again soon.
It had been a long day, and I had also managed a 3 mile run that morning, so as we drove home I turned my phone on silent and had a snooze in the car. As my parents pulled up to my house to drop me off I noticed I had a missed call from an ‘unknown number’. Before getting out the car I listened to my voicemail, it was Sophie, the on-call Heamatology Doctor, asking me to return her call. Now, I was a little perplexed to say the least, I was only at the hospital the day before, it was 8pm on a Friday night and someone from the hospital was calling me. What did they want to talk to me about? She even signed off her voice message asking me if I had enjoyed the Royal Wedding. I played the message to my parents and Mum was trying to reassure me all was OK, saying “Why would Sophie mention the wedding if it was something serious?” But deep down I knew something wasn’t right. Chris, my husband, was at a BBQ round our neighbours, so I asked my parents in to hang around until we got to the bottom of the call. I rang back and spoke to Sophie, she explained that there were some problems with yesterdays blood results and asked if I could return tomorrow to be bled again.
Now I like to think of myself as an informed CML patient. CML has 3 phases of the disease, Chronic, Accelerated and Blast Crisis. Each of these phases are defined by the number of blast cells that are in your blood/bone marrow and follow on from each other as the disease progresses. The more blasts present the worse more serious the treatment and prognosis. The idea is for the TKI drugs to keep you in a permanent safe Chronic phase, much like diabetes.
Still on the phone, Sophie was reluctant to give me details of the problems but I pushed her. “So you’re telling my there is an abnormality in my blood”
“Yes.”
“Are we talking about blast cells?”
“Yes.”
“What is the number?”
“Why don’t we discuss this at the hospital tomorrow?”
“WHAT IS THE NUMBER?”
“Michelle, you have 100% blast cells in your blood.”
Silence.......“Oh shit, I’m in blast crisis aren’t I?”
“I’m sorry to say, yes.”
That night was the longest night of my life, I was hysterical, scared, anxious and inconsolable. My husband and family were telling me that I could get through this but I needed to speak to someone that had knowledge of the path I was about to follow. I turned to two people, Cathy, a CML friend who had recently had a mini transplant and Elizabeth, a lady who ran our CML support group, she had had a transplant for 2 types of Leukaemia 6 years prior. Both Cathy and Elizabeth were there for me throughout and mean the world to me.
I have no idea how my family felt. I didn’t have the capacity to even think about it. Helpless and in despair I suppose, my mum just wanted it to be her in this situation.
“No way!” I joked through the tears “You wouldn’t be able to handle it like me!”
With only a couple of weeks to live, I was at the hospital the following day for tests and admitted as an in-patient on Sunday for more tests and on Monday my best friend Kim, another rock to me, was cutting my hair short in anticipation of treatment to follow.
To give me the best chances of cure I would need chemotherapy to put me back into Chronic Phase CML (2nd remission) before I moved forward to have my Bone Marrow Transplant.
Unfortunately, my Granddad John ended up in Intensive care over the same weekend. He deteriorated fast. He had pneumonia, blood clots AND the lung cancer had gotten bigger. It was too much for even the strongest person to overcome. On Wednesday 4th May 2011 @ 16:50 my Granddad passed away with his family by his side and his favourite music playing – by 19:30 I was receiving my first bag of chemotherapy in a sterile hospital room with my husband holding my hand...
From that moment on I was doing this for my Granddad. Statistically we couldn’t both live through such serious conditions, I believe he passed away to let me live, he knew what had happened and even though he could not speak towards the end, my mum told me you could see the heartbreak in his eyes when they spoke about me. His strength, courage and belief was now with me and all I wanted was to get through this for him.
Love you Granddad.
x
