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“’A new year; a new challenge!’ That’s what I said/wrote on January 1st, 2015.
How many folks have said that to themselves? How many times did I repeat it like a mantra all through the Autumn of 2014?
I had been feeling ill for about a year prior to my diagnosis but I had put it down to prostate and UTI problems and my GP never suggested looking further.
Putting a very positive face on it; the health conditions and symptoms I experienced for six months had been pretty well explained. This included: tiredness, lack of mental clarity, irritability, confusion, low energy levels, smelly, cloudy urine, hot sweats at night, palpitations, lumps in my neck and glands areas, breathlessness and pains in bladder, joints and legs. All of these, plus difficulties at work were bringing me almost literally to my knees! So quite a bundle of joys!
I had a pre-op assessment for the long-dreaded prostate zapping, and I was later called back for follow-up blood tests, as the results indicated significant abnormalities. In early January 2015, I duly reported to the assigned spot in the hospital and then was promptly escorted to the Macmillan ward. I was greeted by a lovely doctor, who sat in a chair and began to outline why I was there. With a mixture of drawings and a very clear description of my situation, she explains (I most probably) have chronic lymphocytic leukaemia (CLL).
I was told that it is incurable, however with five or six sequences of chemotherapy and some other interventions a likely outcome would be three years of remission. My brain turned to sausage meat; all the words went in and out of my attention and lay unprocessed on the surgery floor.
Shock. The words don’t convey how I felt. It was my sister’s birthday and Kym, my partner, was coming to collect me and all I could feel was hot to the touch confusion. Oh good God, I was a cancer sufferer. I had to wait to tell Kym; I couldn’t just tell her off the cuff, we needed to be back home. When we got home, I was able to explain much of what had been explained to me. We both had a tear, but I was given the gift of positivity and Kym is strong, forward-looking and most caring.
A couple of days later, Kym forcefully and kindly accompanied me to the hospital – we are in this together! I was so glad – I couldn’t go through another vacant headspace scenario. The doctor was equally well-versed and clear; Kym asked questions and I was prodded and poked for any bumps.
The next day, the chemo started. So many damn tablets and I can’t recall the names; Kym has my timetable and drug plan, thank the Lord! Three days of chemotherapy, a few days of anti-sickness, and a longer anti-pneumonia regime. This will be treated every 28 days.
I felt absolutely terrible – exhausted, head full of rushing sounds, chest palpitations and a prostate painfully complaining about the amount of liquid I had to ingest. As the drugs kicked in, I felt buzzing and dizziness in my head. Kym kept taking my temperature as she was petrified if it went up, I’d need to be hospitalised.
Just shy of a week after, I received two units of red blood cells in a serum. Kym graciously took me (despite my bickering) as she could’ve had some time for herself. Don’t forget – this girl has put her own job and earnings on hold for me! This is love without asking for a single dime – because of her, I have had a fighting chance.
The staff team in the Luton and Dunstable department were superb, friendly, efficient and very good at explaining things. It has restored my fit in the capacity of humanity to love and serve others with great quality of care.
I had a consultation later in the month, which was quite a mixed bag. The lymphocyte count was well down and the other blood elements were pretty acceptable – that was all good news. However, they discovered I had a genetic defect! We have 23 pairs of chromosomes: 46 in all. Two pairs of mine had fractured and they are cloning, meaning they were replicating the broken individuals and not the joined pairs.
The consequence of this meant that I could no longer be treated at the Luton and Dunstable Hospital. It needed a higher grade of consultant, drugs and technology as it was much riskier; treatment would have to include some additional, targeted chemotherapy and then possibly some time in isolation. Then, it was necessary that I would have a bone marrow transplant.
So, in March, we went to London University College Hospital and we were called into consultation after all the usual checks had taken place (weight, height, that kind of thing). He explained there was an understandable misinterpretation of what the genetic mutations were, and it was not such a serious matter after all, meaning we could return home to continue being treated by the local hospital.
In November 2015, my haematologist declared I was in remission. However, a couple of years following, the blood counts were taking a slide in the wrong direction. I felt unwell and the debilitating fatigue had returned. I am now on ibrutinib, and that kicked off this leg of the journey; it has transformed life for a few years and took my CLL out of consciousness.
I am now on the NVG-111-101 clinical trial for relapsed/refractory CLL at the Royal Free Hospital. The ibrutinib side effects were increasing, as it was beginning to show that it was losing its efficiency. I began the trial four weeks ago, and the treatment phase continues for another seven weeks.”
Roger’s symptoms of leukaemia were:
• Fatigue
• Night sweats
• Breathlessness
• Bone and joint pain
Are you currently dealing with similar symptoms to Roger’s? If so, contact your GP and ask for a blood test.
For more information on our Spot Leukaemia campaign, our goal and how to get involved, head over to our official Spot Leukaemia website at www.spotleukaemia.org.uk
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