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Diagnosis
I first went to my doctors with an annoying lump on my little finger which the doctor agreed to remove at the minor surgery unit. As I was getting up to leave, he called me back to say that I hadn’t had a routine blood test done for over two years. He said it was important to keep a check on my kidney function, amongst other things, due to the medication I was taking to control my blood pressure. So, I agreed to have the blood test done and booked an appointment.
The results from the blood test were:
Total white blood count: 2.1
Haemoglobin: 131
Platelet count: 75
Neutrophil count: 0.85
I received a phone call from doctor that night to ask me to repeat the test.
The results from the second blood test were:
Total white blood count: 3.4
Haemoglobin: 129
Platelet count: 89
Neutrophil count: 2.09
I did not hear from the doctor about these results, but when I looked online they were marked as borderline. I didn’t like the word ‘borderline’, so I booked an appointment with my doctors. After a chat and answering the standard questions, my doctor told me it was urgent that I see a haematologist at my local hospital. He wanted me seen within two weeks. “Don’t be scared if the word cancer is used,” he said, “it might be something else.” ‘Don’t be scared’—those words didn’t scare me, they petrified me.
Of course, two weeks later, urgent didn’t happen. I waited another week and then my wife, Dee, started ringing around my local hospital trying to get the appointment. With great difficultly and determination, Dee eventually managed to get an appointment, but it was another week later. So, two weeks turned into four weeks.
When we arrived for my appointment the place was mobbed and in utter disarray. We were told by the receptionist that the consultant was running very late and could we return in three hours. Not good when you are expecting a diagnosis of cancer. Next to the haematology clinic was the MacMillan Cancer Centre, which gets the brain thinking.
We did return three hours later to attend the appointment, and when we finally got to see the consultant haematologist he said I’d been sent to him because my recent blood test showed pancytopenia (deficiency of red cells, white cells and platelets) and I was asymptomatic
(person showing no symptoms). He then set about asking all the standard questions again. One of which, of course is: do you drink alcohol? My response was yes. We then went through the amount I drink. This was above the government recommended limits and I was therefore labelled an alcoholic. I was confused at the time as to what this had to do with my blood results.
In summary, he said I had mild cytopenia (reduction in the number of mature blood cells), mild macrocytosis (enlargement of red blood cells), and slight anaemia (reduced amount of red blood cells) with moderate thrombocytopenia (low blood platelet count). After some deliberation, I was told the probable diagnosis would be alcohol-induced bone marrow toxicity versus myelodysplastic syndrome (MDS) as there was no evidence to suggest a diagnosis of leukaemia or any other such sinister disorder. I was told that, in his expert capacity, this was not leukaemia. This was a new one on me and I was a little shocked that alcohol could cause such problems with my blood, but I was also elated that he didn’t consider it to be leukaemia. I did drink and I enjoyed a night out with my mates on a Friday, but I never considered myself an alcoholic.
I was due to fly to Portugal six weeks later for a holiday, so it was decided that I would refrain from any alcohol for the six weeks and have a blood test the day before I was due to fly out. The blood test would then be compared to my previous test. This was achieved very easily considering I was labelled an alcoholic. The blood test was taken, and I flew off to Portugal to enjoy a holiday, but with a fear of drinking alcohol.
Upon returning, I attended my next appointment and similar chaos ensued. Following a blood test, I was told my blood counts had dropped further therefore ruling out alcohol toxicity. I must admit I did smile and take pride that I wasn’t an alcoholic, but this was tainted a little because once again the possibility of leukaemia was on the menu. A new appointment was made where I would be introduced to the bone marrow biopsy and aspiration procedure.
The result, as interpreted by my consultant, was low risk MDS. As no further intervention was required at this time, I was sent away with several leaflets to digest the diagnosis. I also had to wait for the results from the bone marrow biopsy which had been sent to a laboratory in Cambridge for genetic testing.
When I returned to his clinic, things had changed somewhat. My bone marrow biopsy had been sent to the UCLH (University College London Hospital) for a second opinion and they were reporting 15‐20% blast. I still had no idea what this meant but I knew it wasn’t good. The diagnosis now was high risk MDS/acute myeloid leukaemia (AML). I was told that I would require specialised treatment which wasn’t available at my local hospital. I was referred to the Haematology clinic at the UCLH in Euston, London.
UCLH Diagnosis
I must admit that the weeks leading up to my first appointment at the UCLH were very nervous days. I was being told that my diagnosis was serious, but I was still clinging on to the hope that my local hospital was wrong. I was healthy, I wasn’t getting infections and I was still going to the gym two or three days a week. I certainly didn’t have bulging muscles, but I was comfortably using the cardio equipment and swimming pool. I still haven’t accepted that I was seriously ill and probably never will.
My consultant did his best to change my opinion; he sat me down, patted me on the knee and said, “I can assure you Terence that you are a very sick man.” I never believed him; he was making the same mistake as everyone else. Because I felt well, my consultant decided there was time to do some more tests, I think to prove to me that I did have AML.
Although neither of us really knew what to expect following the diagnosis, Dee became my rock. It might seem strange, but we decided to have lunch at Pizza Express on the way home, joking that we wouldn’t have time to have lunch out again for a few weeks. We were both feeling shell shocked and joking was our coping mechanism.
When I returned to the clinic, I was told that it was AML and my treatment would have to start very soon. I was also told that I wasn’t a candidate for a bone marrow transplant. Three mutations had come back negative when one needed to be positive, so I was offered a place on the AML 19 trial. Three courses of intensive chemotherapy, each course lasting a week. After accepting this course of treatment, I went home and waited for the call to return and start treatment. I was still very much in denial and was expecting to wake up from this nightmare, but I never did.
Treatment – first course of chemotherapy
My first course of treatment never got off to a good start. I was put onto a general medical ward in a bay of three other patients. All fellow cancer patients you would think, but alas no. The gentleman opposite was being treated for double pneumonia. Not good when I was about to have my immune system wiped out.
The first procedure was to insert a PICC line into my upper arm. I wasn’t sure if I was expecting this; so much information was given to me that it all blurred into one. Having a PICC fitted was brilliant, as everything went into my veins through it and blood was taken from it at least once a day. No more needles. Or so I thought. The nurse looking after me then proceeded to inject my stomach. “Everyone on the ward has them,” she said, “to stop your blood clotting.”
Day one of Chemotherapy arrived and I seemed to cope well. It wasn’t going to be as bad as I thought, I told Dee.
Day two wasn’t quite so easy, but I coped. Day three was a different story. I started to feel unwell and spent more time in bed. I had no appetite and felt sick. On day four I spiked my first temperature with no apparent cause. They took blood cultures but never started any antibiotics. On day five I was still having spikes in temperature and suffering with diarrhoea. They started me on an antibiotic, but I had to stop after developing an allergic rash.
During the last days of treatment, I continued to feel ill. By day ten I had a little blood in my urine and was getting nose bleeds. They decided to give a transfusion of platelets and sent me for an ultrasound on my kidneys, which thankfully I passed. I continued to get spikes in temperature and was started on different antibiotics when my blood cultures were found to be abnormal.
The good news was that my blood counts were beginning to recover. Although I was still spiking temperatures and feeling unwell, my body was recovering. The consultant said as soon as my neutrophils reached 0.5 I would be okay to return home.
Well, they reached 0.5 but I was still spiking temperatures and the doctors wouldn’t sanction me going home. Christmas was only a few days away and I was determined to go home. Being isolated in one room for a month was beginning to take its toll. When one of the highlights of your day is when they come in to take your vitals or take blood, it’s time to get out of there, and quick.
At first the doctors were having none of it, my pleas falling on deaf ears. Suddenly they had a change of heart (tears helped). If I monitored my own temperature and blood pressure and promised to go immediately to my local A&E department should I become unwell, I could go home. I agreed and was released—sorry, ‘discharged’ on the 22nd December.
What I hadn’t considered was the impact on Dee. I was a manager at a top software company, and I forgot one of my rules: “What impact does your action(s) have on others?” While Dee was supportive of me coming home, the stress on her was immense. I knew how I thought I felt, but she didn’t, and therefore was constantly worried about me while making Christmas memorable. Later in my treatment Dee understood how I felt better than me or any consultant. There were signs in my appearance, mood and actions that only Dee noticed, and that probably saved my life.
Anyway, I survived Christmas and my temperature returned to near normal. I’m glad I spent Christmas at home with Dee because what was to follow during my second course of chemotherapy should have probably killed me.
Treatment – second course of chemotherapy
I was recalled to hospital at the beginning of January but never went to the ward. The UCLH have rooms at a four‐star hotel just around the corner from the Macmillan Cancer Centre. I was going to be looked after by the Ambulatory Care team and stay at the hotel with Dee. As with the hospital wards, the care, nurses and doctors were excellent.
As I was about to start the treatment, I was feeling a little tired but well. I was also anxious; this time I knew what to expect and wasn’t looking forward to it. I was also approached by a research study team asking if I would participate in TREATT, a trial to evaluate tranexamic acid therapy in thrombocytopenia. It was to trial a drug which it was hoped would reduce bleeding in patients where it was expected their treatment would reduce their platelet count to below thirty. I have no idea if I received the drug or the placebo but it’s one of the worst decisions I have ever made in my life. I had to take three horse-sized capsules three times a day. Halfway through the trial they had to give the drug, or placebo intravenously. I couldn’t swallow any more, they were huge.
Well the treatment started and I was coping reasonably well. After I had finished the course of chemotherapy, myself and Dee decided she should go home for a few days as I seemed to be coping well and managing to get to the Ambulatory Care unit each morning.
What a mistake that was. That evening I cooked myself dinner (microwaved a ready meal) and was feeling okay. The next morning was a nightmare for me. I woke soaking wet from sweat, I was shaking violently, I couldn’t control my hands and I was vomiting. I started to panic but tried to ring the hospital number that you are given in case of an emergency. My eyes wouldn’t focus properly, and I couldn’t dial the number with my hands shaking so violently. I have no idea how I did it, but I walked to the Ambulatory Care unit and fell into a chair.
I don’t remember a lot for a few hours. My next memory is of being in a hospital bed linked up to a drip with the nurse telling me I had an infection, which they were treating aggressively with antibiotics, and Dee was on her way back to the hospital. I was in a side room waiting to be transferred to the main wards.
The next few weeks consisted of me suffering infection after infection, drifting in and out of sleep. I wasn’t in a good place. I was hallucinating, during which I saw some horrible things, including the Grim Reaper standing at the bottom of my bed. The nurses were taking bloods every day to test and every day they told me my counts were not registering. This went on all through January and February with the doctors telling me everything was alright and my counts would come back. I found myself crying at the slightest thing and feeling that there was no way I was recovering from this. I had gone from feeling fit and healthy to being at death’s door.
In March, the doctors conceded that my bone marrow was not going to recover. It’s very rare for this to happen, I was told, as if this was some comfort to me. Only one patient a year develops this complication, I was told, which was good for anyone else who was going to have similar treatment. It was only March and that one person, me, had already developed the complication. They were going to start looking for a stem cell donor and I would be transferred to the transplant team.
When everyone left my room, I cried. I was convinced this was the end for me. I had already been told at the start of my treatment that I wasn’t a suitable for a transplant and nothing had changed. Things were not looking good and I was feeling very sorry for myself.
Another complication was that I wasn’t eating. Despite all the efforts of the dieticians, including feeding me through a tube, I was losing a lot of weight. When I started treatment, I weighted 96kg. This was to drop to 63kg.
After discussing it with Dee and chatting to some of the nurses, I decided to give it a go and the search for a donor started.
Bone Marrow Transplant (BMT)
Although I had been visited by senior nurses and consultants from the BMT team, all offering plenty of support and advice, I was entering this stage of my treatment very disillusioned. I had given up on any thoughts of a successful outcome.
The first course of action was to test my brother to see if he was a suitable match. Everyone who knew us used to say how much alike we were. I thought this was just a formality. How wrong I was; it came back negative as a match. The result was bad news, as the chance of surviving a transplant decreases if the donor is not a family member. The search then went worldwide.
After a donor was found for me, the consultants suggested that I go home for a few days before starting the treatment. I was told it would do me good for me to have a change of scenery and some home cooking.
All I had in my mind was that they were sending me home to say goodbye. I had no immune system and they were sending me out into a world full of germs. Although it was different scenery for a few days, it was a frightening experience worrying if I would get another infection when I had only the local hospital as backup.
When I returned to the UCLH, I was in a different ward with different nurses and different doctors. Everything was alien to me. Coupled with the fact that I had lost thirty kilograms I was a very scared man.
The actual stem cell transfusion is a very simple process. The cells cannot go through a PICC or a pump, so I had a cannula fitted. The bag of stem cells was connected to this and gravity pushed the cells into my vein. Two nurses had to be present during the transfusion in case of problems.
One piece of advice I would give anyone going through this type of treatment is this: if you are given cyclosporine as a treatment, you must drink plenty to protect your kidneys. I didn’t and I now have some damage to my kidneys.
The transfusion went well and the wait to see if it had worked began.
Recovery
My recovery started with another round of infections coupled with sickness and diarrhoea. On top of this, I was attacked by Graft versus Host Disease (GvHD). GvHD was horrendous. It attacked my skin, gut, bowel and chest. I was put on a large dose of steroids and these eased the symptoms. Unfortunately, when the dose was gradually reduced, the symptoms returned. I felt that ill that I was convinced the transplant hadn’t worked.
Then one day the nurse walked in with a smile on her face and told me my blood test had showed a “tremor”. There was an improvement in my blood counts. A small window of hope, I thought.
While my blood continued to improve slowly, I wasn’t improving. GvHD was playing havoc with my gut and bowels. I really was not feeling good.
Then the bombshells started falling all around me. They wanted my bed for other patients. It was suggested that I move to the hotel to continue my recovery. I refused following my earlier episode in the hotel. The nurses were good and supported me but in the end my stay in the ward ended abruptly.
Dee burst into tears at the news. I wasn’t ready and Dee certainly wasn’t ready for me to come home. Although they considered me fit, I still had diarrhoea and stomach pains, and I could hardly walk I was that weak. Discussions were had but they were adamant that I was going home today.
So, I went home by hospital transport but within twenty‐four hours I was blue lighted to my local hospital with suspected blood clots in my legs. I was in so much pain until I was introduced to Entonox (gas and air) by the ambulance crew. What a wonderful drug, but only if you keep breathing in. Apparently, I was finding the experience highly funny.
In hospital, the Entonox was replaced with morphine, another wonder drug for pain. I was kept in overnight while they performed tests, but the pain subsided and I was allowed home.
Forty‐eight hours later I was in hospital again with suspected sepsis. This continued for some months, with me in and out of hospital for different reasons. Myself and Dee truly believe that the turning point of my recovery was when they suggested that I receive IVIG (Intravenous Immune Globulin) as a treatment. I only had one session but within twenty‐four hours I felt so much better. Although I still had bouts of illness after the treatment, I was beginning to finally feel like I was going to beat this.
After Recovery
Finally, the good news arrived that I was in remission/cured, although in my case it was worded differently. Please remember that I had a very good relationship with my consultants, and we talked very openly. I was told that my case was now considered boring in the multidisciplinary team meetings. I was now “cured” of AML, which of course was their primary job. There was little more they could do medically for me other than have regular check‐ups. I was told I could return to work and I was to be handed back to my GP practice so they could look after my overall health. My next appointment was arranged for six months’ time.
Excellent was my initial response, just what I felt ready for. Reality soon set in. I was left with neuropathy in my lower legs, myopathy in my thighs, numbness in two fingers, pain in all my fingers in the morning, constant fatigue and no days where I can say I felt well. It’s true that the stem cell transplant saved my life but it didn’t give me my life back. It’s given me a different life.
COVID‐19
When we first started hearing about COVID‐19 as a serious problem, I was in hospital with pericarditis and never thought I was in any danger. Unlike most people, I have no bad memories of hospitals. During my treatment, I have always received the highest care from very busy nurses and doctors. They are almost like my sanctuary. I say ‘almost’ because the place I feel totally safe is in my bed. I don’t know why but I feel totally safe there.
I was told to shield for a minimum of twelve weeks which I never found to be difficult because I had been avoiding other people since my diagnosis four years ago. Now Dee is another story. We were advised that Dee should shield as well. Shielding for Dee meant she had to stop work, which her employer has been very supportive of. I am working from home, so I am keeping busy during the day, but Dee has little to do. Cleaning, baking and the garden filled the early weeks of shielding but there is only so many cakes you can eat and only so many flowers you can plant. Although necessary, not going out because of my conditions has been very unfair on Dee. Typical from Dee there are no complaints, only support, but I know it’s been tough.
I not sure what I am going to do now the lockdown is easing. I live in Devon and we are slowly being overrun with day trippers and holidaymakers from all parts of the UK. Just be careful I suppose.
Thank you
Thank you to Dee; without you by my side I would have died. To all the staff at UCLH on Ward 16 North and Ward 13 Bone Marrow Transplant Unit, Elle, Gemma’s, Emma’s, Nicky, Gavin and many more for putting up with me and helping me through some dark times. To little Maria (I’m not sure if that name is correct but it’s close) who usually cleaned my room and made me smile (sometimes). To the nursing assistants who checked my vitals on a regular basis (02:00am was not a good time to check vitals). To Natalie who worked hard on getting me walking again and insisting that I start reading again. Lastly, to all the consultants, nurses and auxiliary staff at the Haematology and BMT clinics who tried to kill me (their words not mine) but failed.