This is a somewhat different post to my usual technical ones…
In December 2017 I had major surgery. This was to remove an adrenal cortical carcinoma (ACC) that had grown on one of my adrenal glands and then up my inferior vena cava (IVC) into my heart.
Early on I decided, though not hiding the fact I was ill, to not live every detail on social media. So, it is only now that I am back to a reasonable level of health and with some distance that I feel I can write about my experiences. I hope they might give people some hope that there can be a good outcome when there is a cancer diagnosis.
I had known I was ill for a good while before I was diagnosed in May 2017. I had seen my Parkrun times slowing week on week to the point where I could not run at all, and I had also had a couple of failed blood donations due to low haemoglobin levels.
It was clear I was unwell, and getting worse, but there was no obvious root cause. All sorts of things had been considered from heart to thyroid. Cancer was suspected, but a tumour could not be found. Try as they might, my GP had failed to find a test that showed anything other than my blood numbers were not right. I was just continuing to get weaker, by that spring I was unable to walk more than a few hundred meters without getting out of breath with my heart beating at well over 170 BPM.
The problem was that ACC is a rare form of cancer and mine had presented in a hard to find way. There are two basic forms of ACC. One shuts down your adrenal system, and you notice this very quickly. The other form shows no symptoms until the tumour starts to physically impact something. This was the form I had. In my case, the tumour was increasingly blocking blood flow in my IVC and heart.
In the end, the tumour was found because of a lower abdominal ultrasound. By the time I had the ultrasound scan it was about the only diagnostic that had not been tried. It was a strange mixture of shock and relief to be immediately told after the scan by the sonographer that ‘the doctor would like a word before you go home’. So, at least I knew the cause of why I felt so ill. I left the hospital that day with a diagnosis of an adrenal tumour that was most likely benign but may be malignant, on blood thinning injections and with a whole set of appointments to find out just how bad it was.
At this point the NHS did what it does best, react to a crisis. Over the next couple of weeks, I seemed to live at the regional cancer centre at St James Hospital in Leeds having all sorts of tests.
My health, and the time I was spending at the hospital, meant there was no way I could continue to work. I was lucky I was able to transition quickly onto long term sick in such a way that meant I did not have the financial worries many cancer patients have to contend with on top of their illness. I would not be seeing work again for over 9 months.
The next phase of diagnostic tests were wide ranging. Plenty of blood was taken, I had to collect my urine for 48 hours, there were CT scans and PET Scans, all to get a clearer idea of how bad it was. The real clincher test as to whether the tumour was benign or malignant was a biopsy. One of those strangely pain free tests, due to the local anaesthetics, but accompanied by much poking, pushing and strange crunching noises. Then a 6 hour wait flat on my back on a recovery ward before I could sit up, let alone go home.
It was whilst laying down post-test I had probably my best meal on the NHS. Having just missed the lunch service on the recovery ward, a good move from past experience, a nurse produced a huge pile of toast and jam. A perfect meal for the reclined patient.
It was also during this post test recovery time that I first met other cancer patients and had a chance to have a proper chat with them. No matter how bad your case seems to be you always seem to be meeting people with a worse prognosis. Whilst on the biopsy recovery ward I met a man who told me his story. A check-up because he did not feel well led to the discovery of a large brain tumour which then spread throughout his body. He knew he only had a short time left. The conversation opened my eyes to the reality of my and other patients’ situations.
A couple of weeks later we got the bad news that the cancer was malignant and very advanced. We had clung onto the hope it was benign. The news was delivered in a very matter of fact way, that I probably would not see Christmas unless a treatment plan could be found, and the options were not good. There were tears.
However, there was at least some good news, the tumour was a single mass, it had not spread around my body. The problem was that there was no obvious surgical option due to its size and position. All that could be done was to start chemotherapy to see if the tumour could be shrunk. So, a very ‘old school’, and hence harsh, three cycle course of chemotherapy was started in July 2017.
I dealt with all of this in a very step by step way. People seemed surprised by this, that I was not more emotionally in pieces. I assume that is just my nature. I think this whole phase of my illness was much harder on my partner and family. They had to watch me getting more ill with no obvious route to recovery. For me it was just a case of get up and doing whatever the tasks were for the day. Whether they be tests, treatments or putting things in place like a Lasting Power of Attorney.
Life became a cycle of three-day eight-hour blocks of chemotherapy, then a month to try to recover. On each cycle I recovered less than the previous one.
The chemotherapy ward is strangely like flying business class. The seats look comfortable, but after eight hours they are not. You can’t go to the toilet without issues, on an airplane it is getting out of the row, on the chemotherapy ward it is taking the drip with you. In both cases, the toilet is too small. You feel tired all the time, just like jet lag, and of course, the food is questionable at best.
As I had seen on other wards, there was a strong camaraderie on the chemotherapy ward. Everyone is going through life changing treatment. Some people looked very ill, others as if there is nothing obviously wrong with them, but irrespective of their condition I found the patients, as well as the staff, very supportive. It was far from an unhappy place. Not something I had expected.
In many ways the worst side effect of chemotherapy, beyond the expected weight loss, hair loss, nausea and lack of energy was that my attention span disappeared. For the first time in my adult life I stopped reading. I struggled to make it through a single paragraph without forgetting where I was. I remember one afternoon in a hospital waiting room, whilst waiting for yet more test results, trying to read a page in a novel. I never got to the end of the page, just starting it over and over. It was also at this time I realised I had to stop driving, I felt my attention was too poor and my reactions too slow.
As I said, by this point I was very weak. This made most day-to-day activities very hard, but the strange thing was I found I could still swim. I had had the theory that though my IVC was blocked, hence not bringing blood from the lower half of my body, if I swam with a pull-buoy just using my arms, I would be OK. This turned out to be correct, much to the surprise of the medical professionals. So, I started to do some easy swimming in the recovery phases between chemotherapy cycles when I was able. It turned out the biggest issue was I got cold quickly due to my weight loss. So, swim sessions were limited to 15 to 20 minutes and just a few hundred metres.
After the planned three chemotherapy cycles all the tests were rerun and it was found that the tumour seemed unaffected. It was always a very low chance of success. I had already decided I was unlikely to start a 4th cycle as I felt so ill, it was just no life. I did not want any more chemotherapy when the chance of success was so low. Better to have some quality of life before the end.
This is where I got lucky because I was being treated at a major cancer research centre. I had been told there was no adrenal cancer surgical option for the way my ACC had presented. However, the hospital’s renal cancer surgical team had seen something similar and were willing to operate with the support of the cardiac and vascular teams. A veritable who’s who of senior surgeons at St James as I was informed by the nurse when I was being admitted for the operation in December 2017.
My operation meant stopping the heart, removing the tumour along with an adrenal gland, and a kidney (collateral damage as there was nothing wrong with it other than its proximity to the tumour) and then patching me all back together. Over 10 hours on the operating table and a transfusion of a couple of pints of blood.
When you see a very similar version of your operation on the BBC series on cutting edge surgery ‘Edge of Life’ you realise how lucky you are. Just a few years ago or living in another city and the operation would not have been possible.
Given my heart had to be stopped, I was treated as a cardiac patient, and the cardiac department moves you through recovery fast. Most of the people on the ward were having heart bypasses, so I was ‘the interestingly different’ case to many of the staff. I did take longer than the usual 5 days on the ward taken by bypass patients, but I still managed to get out of hospital in 10 days, in time for Christmas. It is surprising how fast you can get over being opened up from the top of your chest to your groin, and how little pain there was.
At this point I was in theory cured, the tumour was removed, blood was flowing again but I was very weak and recovery was going to be a long road. I started with walks of only a few minutes and then the rest of the day resting. The great news was that I could walk again without getting out of breath and my heart rate going through the roof.
So, over the next few months, I gradually regained my health, some weight, some hair and my attention span. I was able to ease back into work part time in the early summer of 2018.
However, the surgery was not the end of my treatment. The surgeons were confident they had got all the tumour they could see. They said it was well defined, so cancerous and normal tissue could be differentiated, but there was always the chance of microscopic cancerous cells remaining. So, I was put on two years of Mitotane tablet-based chemotherapy. This was the treatment with the best evidence base, but that is not saying much. There are not that many research studies into ACC treatment options as it is so rare. My treatment plan was based on a small Italian and German study of 177 people, most of which did not complete the plan, but it did show a statistically significant reduction in the chance of remission after 5 years.
Mitotane stops cell division and I had not realised how hard this would make my recovery and specifically regaining some fitness. I was OK for day to day living, but an activity like running was not possible. I twice started Couch to 5K but had to give up as I could not progress beyond the walking stages.
The mental weight of everything did not catch up with me until a good year or so after surgery, by which time I was back at work and living a ‘normal’ life. Previously people had kept asking ‘how are you doing?’. As I said, I felt they expected me to be in pieces, and I was just going step by step. It is only when the main treatment stopped and life returned to normal that everything that had occurred hit me. A seemingly unrelated fairly small in the scheme of things family incident caused it all to come flooding back and completely stopped me in my tracks.
It was that this time I reached out to the support services of the Macmillan charity and specifically the Robert Ogden Centre at St James for help. This was something I had not done prior to this time, though my partner had used their family support services earlier in my treatment. With their counselling help, I worked my way through my problems and got back to some form of normal.
In the autumn of 2019 I came off Mitotane and once it was out of my system I could at last try to get fit again. So, it was back to Couch to 5K and with a few repeated weeks I was able to run 5K again. I was back running Parkrun in November 2019. It was great to get back to my local Roundhay Parkrun community, though I had been volunteering whenever my health allowed throughout my illness. I was running much slower than before I was ill, but running.
Since then, I have to say Covid lockdown has helped me, giving me a structure to my training. I have certainly got a reasonable level of endurance back, but any speed seems to elude me.
I have always had a fairly high maximum heart rate, over 200 well into my 40s, and before getting cancer it was still in the 190s. Now, post illness, I struggle to reach 160 and my bike and run maximum heart rates are very similar. I have tried to do a maximum heart rate test, it is as if I get to a heart rate around 150-160 for a tempo run, but it barely goes any higher when I sprint. So, I have a question for anyone with experience of training after cancer and heart surgery. Is it expected after stopping the heart that my maximum heart rate should be way lower? Or is the problem my hormone levels are different due to the lack of one of my adrenal glands? Or is it just I am getting older and have just lost muscle mass? I am not sure I will ever know the answer to that one, it is not exactly a question the NHS is set up to answer. All their post-operative guidance is aimed at day-to-day levels of exertion not the elevated levels caused by sports.
But that is a minor gripe, I am reasonably fit again. I have recently completed my first triathlon in 5 years and between lockdowns walked the 268 miles of the Pennine Way with my partner. I am not as fast as I was, but I am 5 years older and have had major heart surgery. Hell, I am alive.
Like all cancer patients, this is not the end of the road for my treatment. I am still on steroids and have annual CT scans, but all the signs seem good that the surgery got the tumour and there is no reason I should not live to a ripe old age.
I would not have got here without the support of my partner and family, and the unbelievable work of the NHS and the support services I have used. I can’t thank you all enough.
Leeds Hospital Charity – the charity of Leeds Teaching Hospitals
Macmillan Cancer Support – support or cancer patients and their families
NHS Blood Transfusion Service – please consider giving blood, without regular donations surgery like mine is not possible.
