I woke this morning feeling very sober. But also very glad to be alive. Mixed motions for sure. You could even say that I was “sorrowful yet always rejoicing.” which resonates with my experience these past three year
At almost the exact time I am writing this article three years ago I was attending a private hospital appointment with my wife having already been driven to an NHS hospital that morning for yet another IV antibiotic injection to try and treat the pneumonia that was stubbornly refusing to go away.
Nobody at the local hospital seemed to understand that I was getting sicker not better and that my immune system was clearly severely compromised.
I had been an inpatient or day hospital patient ever since I more or less collapsed on the 28th April 2017. It was something of a sliding doors moment as I stepped off the underground train and felt my legs give way. My life as I knew it came to an abrupt halt that day on the way home from an otherwise fairly normal day in the office.
Back in April 2017 a surreal trip to A and E somehow led to me being sent home, despite being confused and unable to walk, but with a pneumonia diagnosis and only oral antibiotics. I was admitted to hospital within a day or two, that part is quite hazy.
On the 1st May 2017 I was told that I almost certainly had a slow growing (or chronic) form of [blood cancer. That happened whilst I was lying in a hospital bed alone. A haematologist at the first hospital called me on the phone and told me that I must come see them urgently, but that I shouldn’t worry as it was ‘only’ a chronic Luekaemia! Nobody should get such news in such an impersonal way.
The fact I am a doctor didn’t help at all since any knowledge I might have remembered at that point would have been 22 years old . It turns out Dr. Google is a bit more up to date but still rather behind the times. Better to turn to accurate sites run by charities such as Blood Cancer UK, but I didn’t know that at the time.
I then spent a brutal 19 days waiting for the formal confirmation of the diagnosis and throughout that time was denied any contact with a cancer doctor or nurse despite being an inpatient for much of that time. I begged the nurses every day to bleep the on call haematologist. They said they would. But it eventually turned out such a person didn’t exist in that hospital. I now firmly believe no blood cancer patient should be admitted to a hospital that doesn’t have resident blood cancer registrars on call in the hospital. And yet many do, sadly risking lives.
As I waited to see the doctor I couldn’t see how it was possible that I had a slow growing blood cancer since I had normal blood results just a couple of months before . Eventually I would discover that my Full Blood Count (FBC) simply hadn’t been performed that day. But it certainly didn’t help the stress I was feeling that fateful morning of the 20 May 2017.
The private doctor was kind but very brief and had no information to give us. My world coming crashing to an abrupt halt. It has never fully restarted. I should say at this point that many people with a similar diagnosis to mine have no symptoms whatsoever and some are able to avoid active treatment for two decades or more. Please do not assume that my story will be your story.
Within a few short months in November 2017 I would need emergency surgery to remove a massive tumour of both tonsils that was trying to smother me to death. I was breathing through a gap no wider than a straw and woke up choking the second I started to drift off over several days as they worked out what to do.
One doctor casually told me on the ward round that it was most likely an aggressive lymphoma, assumed to be an acute transformation (the so-called Richter’s syndrome). The histology of the removed tonsils revealed it was “just” the CLL and so I really wished that doctor hadn’t a different diagnosis to me. I would have another surgery for lingual tonsils in February 2018, and take chemotherapy from October 2018 to April 2019.
Blood Cancer has been like a tsunami in my life ever looking for new ways to try and kill or destroy me , my dreams, my career, my hobbies, my charity work, my writing, my ability to watch TV at one point, and yes even all my relationships if it could. I have been grumpy at times, distracted, detached from the goings on of normal life. And so I have had to learn how to manage my emotions. Which sounds so civilised but sometimes is about as easy and apparently impossible as herding cats .
Sixteen months after that fateful day, I finally lost whatever was left of my dignity . For almost a month between my first and second chemotherapy cycles I lay in a hospital bed needing nurses to help me get on and off the camode. Imagine that I was glad to be finally able to use a Zimmer frame and hence be discharged. This was a small step forward towards some recovery of health. And I am grateful that slow journey has continued, but I do still have a long way to go.
A year after stopping chemo I am still in a deep remission , and their tests are not sensitive enough to detect the few cancer cells they tell me are almost certainly still there. I am supposed to watch and wait all over again, knowing that my old enemy is almost certainly hiding and regrouping. Meanwhile his three thug friends are not relenting so the gains I have seen in my quality of life have not been as great as some. But having said that the difference between how I was at my worst and how I am now is light and day so again I have much to be thankful for.
But lets go back to Adrian and his wife three years ago today. The car journey home was too short to talk enough about it. So we stopped briefly at the side of the road but felt we had to rush to not arouse the suspicions of the children. Then on arrival holding myself together since we had agreed not to tell them straight away. I was afraid that I would ruin the A level and GCSE exams that two of our five children were facing later that month. Months later I discovered one of them found out by secretly opening my doctors letter before we realised it had arrived.
I remember as soon as my family had gone to sleep I collapsed into floods of unconsolable tears . Through the haze I somehow searched for a real specialist in the type of blood cancer and came across the largest blood cancer unit in Europe: UCLH. I saw they had a 24/7 nurse specialist helpline for patents. Cheekily I noticed it didn’t actually say their patients.
So I called it, and I had my first proper contact with a compassionate unhurried NHS hero . It was his night shift but he talked me down, explained that they would normally use different stronger antibiotics to the weaker IV antibiotic I was still on daily at the other Hospital. We came up with a plan to get me referred.
I will forever be grateful to that nurse and to the Internet forum (a bit like this one) which suggested a specialist was needed. I had to fight for another two days to make it happen. Somehow I knew it was a fight for my life. I had to complain formally to force the local consultant haematologist to come see me for the first time. He refused to make a referral, yelled at me, and told me he would now cancel the follow up appointment he had booked for me in three months. His plan had been to leave me in limbo for all that time seemingly oblivious I was struggling with a bad infection. He explained he had kept the result of the flow test secret from me and my other doctors because he did not believe that even with the diagnosis my immune system was affected. He never examined me.
The following day, the 23rd May, was dreadful yet glorious. I somehow shuffled into a GP appointment looking increasingly grey after yet another injection at the hospital. A second opinion referral was faxed. That afternoon I had a severe rigor and temperature. This was the first time I had a fever due to those lazy white blood cells only finally deciding to wake up. But I was beginning to go into sepsis . So I was admitted that afternoon for the first of five times so far to the famous UCLH tower. And they saved my life with IV tazocin. By then though I had lost muscle strength I have never managed to fully regain.
Incidentally it turned out that since April 2017 so far I have never managed to have another fully normal day in the office again. I did try and work in a limited way for a few months after I finally recovered from that pneumonia. Ironically given what is happening in the world at the moment, I spent those months working mostly from home, or actually my bed, long before it became almost fashionable.
It wasn’t really working for me or my employer and ultimately I accepted advice and came to the painful decision it was time to stop fighting the inevitable and go on to long term sick leave. I am still in that position still and am blessed to be receiving sick pay even now. Again something to be hugely grateful for.
Twin muggers now relentlessly follow me everywhere I go: fatigue and repeated infections. Their attacks are vicious, although it is true they got a lot worse when I was becoming sick enough to need treatment, and they do go just a littler easier on me nowadays. But never a day goes by without feeling like I am seriously sick, and should just rest. The only feeling I ever had that was even remotely like this before cancer was when you are in the middle of the flu and it is a mammoth task to even get out of bed.
And as the years go by a third mugger has joined them: increased immune reaction to pollen, dust mites and who knows what else. I am told by the Immunologist that my remaining white blood cells are a bit lazy and don’t respond well to calls to go to work fighting bacteria and viruses. But as they sit around the pool drinking they seem to like having a rave and partying in response to allergies and even in one small area my own cells. People with certain blood cancers are at greater risk of allergy
And today I am sitting in the same bedroom I left thirty years ago in my parents house. Talk about boomerang generation, who expects to be living at home even temporarily at 49 years old? But we made this decisions due to the inability to safely shield at home for months since my wife is a key worker and some of the adult children help at the food bank. I felt there was no alternative but to come and self isolate strictly with my parents who keep asking me not to refer to them as elderly online. My father also has blood cancer, although three years ago today we were blissfully unaware of that fact.
As a result of this experience and hearing from other patients, I do think it is so important people with blood cancer are usually treated by an expert in their condition where possible. More of that in another post.
The night of the 20th May 2017 was the first of many sleepless nights since . They tell you that it gets better and it really does. But the memories never leave you and are as fresh raw and painful today as they were three years ago. I have had good days and bad days since. But I have not had a single day where I have got through the day without thinking of blood cancer, it is impossible because of the effects it had on me.
And yet not all of the effects have been bad. I am a more compassionate person and have been forced to learn how to calm my soul, even practicing meditation.
Mixed emotions for sure. I am angry that this blood cancer has destroyed my promising career. But more thankful to be alive than I ever was, and more determined to try and do some good for others.
)? How do you keep in contact with your family? How is your wife dealing with the challenges of being a key worker? How are the children dealing with you being away from home (and keeping motivated if still of school age)?
