In February 2016, I attended an NHS medical freely available at the time. The result of the quick blood test gave the nurse cause for concern, so I was told to visit my GP.
This I duly did and after some considerable time involving further GP visits and a visit to the Haematology department of Great Western Hospital (GWH), Swindon, I was finally diagnosed with B-cell chronic lymphocytic leukaemia (CLL) on the 4th August 2016. I had experienced no symptoms whatsoever during the build up to my diagnosis.
As my blood counts were not too serious at the time, I was discharged from the GWH on ‘watch and wait’ with six-monthly blood tests.
Now I have read that the term ‘watch and wait’ really means ‘watch and worry’. I did not see a problem with my diagnosis, I was not presenting with any of the usual symptoms, so I was determined to continue my lifestyle until I no longer could. So, life continued as normal – four miles jogging every day, holidays, motorsport, DIY, you name it.
As I retired early I became a ‘non practicing’ Aircraft Engineer, but still having a head for figures I could see by the results of my first two blood tests that I could extrapolate when I would have to reduce my lifestyle and have treatment.
My calculations of August 2018 were correct and the result of my blood tests in August of that year caused so much concern to my GP that I was in the practice at 15:00 on the 13th August and attending the Ambulatory Care Unit of GWH by 16:00!
The Haematology Department received the news of my arrival whereupon I was told to report there immediately. So, the last few hours of the working day were having blood tests and chatting to the duty consultant. I was then told to go home, with cannula still in place, and report back at 08:30 the next day. I duly arrived at the specified time and during the day I underwent further blood tests until my arms ran out of room to give blood; a very, very thorough physical examination; a long discussion about myself and the warning not to jog four miles or even walk too briskly. After lunch and more blood tests, a bone marrow biopsy was carried out which I found to be totally painless and nothing like all the horror stories that you hear and read about.
During the rest of August while awaiting in depth analysis of the bone marrow and blood samples, I had a CT scan of the neck, abdomen and thorax followed some days later by a cardio echo.
4th September 2018 was the big day. My wife and I attended the Haematology department for all the results: lymph nodes were slightly swollen, my spleen was slightly enlarged, and I was very anaemic, but my heart was OK. And the really good news (not) was that I have the TP53 mutation which means no chemotherapy but I will be, as an outpatient, taking 420mg of ibrutinib per day with accompanying antibiotics three times a week for the foreseeable future. Oh, and to drink lots of water. At least four to five litres a day.
After the first month of treatment, I found myself no longer breathless when walking up the lane and I started to take short brisk walks. Also, there were no side effects as yet. I lost about four kilos in weight, but that is no problem as I am now at the correct weight for my age and height.
Month two and my red cell count was on the up, and my lymph nodes and spleen were back to ‘normal’. The white cell count was on the way down but slowly. I still had a good appetite and my weight was steady at eighty kilos.
Since March 2019, I have been taken off antibiotics and my white cell count continues to fall. By September 2019, my consultant has concluded that my full blood count will be back to as near normal as possible.
I am now jogging an average of 5km a day when I can which keeps my weight at a healthy 81kg.
My condition has not stopped me travelling abroad with plans for much more in 2019 and 2020.
What can I say about ibrutinib? It is an absolutely fantastic form of treatment. Since starting ibrutinib in September 2018, I have encountered a few side effects, notably skin lesions. Mostly benign but one is up for a biopsy in August 2019. I have also contracted a slight cataract in my right eye which my consultant is keeping an open mind about due to its sudden emergence in January 2019.
So far so good. What I say to those with CLL is do not be down hearted. Look it in the eye and do not be beaten. After thirty-one years’ service in the Royal Air Force, often in the face of adversity, one tends to crack on and make the best of everything. Make your life worth living. Don’t let it beat you!
And keep taking the pills!