On a Monday evening in November 2017, I had been helping my son’s football team, assembling a new set of goal posts. The work was a bit physical, but nothing out of the ordinary. I was always doing a bit of DIY, so it really shouldn’t have affected me. The following day though, I felt a bit stiff and aching, mainly in my ankles and wrists. Putting this down to the physical activity of the evening before, I thought nothing more of it.
After three days, the symptoms became worse and my ankles and wrists swelled and became more painful. Realising this was something a bit more than just a sprain or two, I went to see my GP the Friday morning, thinking I perhaps had gout or some form of arthritis.
The GP was very thorough and sent me off for blood tests. When the results came back, I was told to go to the Emergency Assessment Unit at the Royal Stoke Hospital on the Saturday afternoon. Naturally, my wife Adele and I were getting very concerned at this point.
I spent the afternoon having further blood tests and my temperature and blood pressure monitored. By late afternoon, the blood test results were back, and the haematology consultant talked to me and Adele about what the likely problem was. I had some form of blood cancer – either a form of leukaemia or lymphoma. I was told there was a large accumulation of faulty white blood cells in my blood, preventing proper production of effective blood cells. This large accumulation of faulty cells was the likely cause of the joint pain.
To confirm an accurate diagnosis, a bone marrow biopsy was needed, and this was scheduled for Monday. I was allowed home under strict instructions to monitor my temperature and call the unit if I became unwell.
In the meantime, we returned home to break the news to our two sons, Josh aged 21 and Liam aged 13. The devastating news was hard enough for us to deal with, and we had the added concern over the effect it would have on the boys. Josh was also in his final year at Derby university.
The findings of my bone marrow biopsy came two days after the biopsy was done and confirmed that I had acute myeloid leukaemia (AML).
I asked the haematology consultant about the odds of survival and we were told the general statistics for people with the illness were 50/50, but because I was otherwise in good health and physically fit, then that could potentially swing the odds more in my favour. The consultant was fairly guarded and talked about AML being ‘treatable’ rather than being ‘cured’.
The whole thing was a huge bombshell. I had no idea what the symptoms of blood cancer were, other than tiredness and bruising. Having read up on it afterwards, I realised that night sweats were a common symptom – I had been having these for two or three weeks, but it wasn’t unusual for me to get hot at night. As for tiredness, I was regularly tired because of my job, getting up at 4am to go to work delivery driving and not getting home until late afternoon.
Following my diagnosis confirmation, I was told I needed to be admitted the same day for treatment to start quickly.
Telling my family was particularly difficult. My Dad had passed away in early November and it had hit my two sisters quite hard. One of my sisters was undergoing surgery for breast cancer on the same day my diagnosis was confirmed, so we made the decision that Adele would visit my Mum and my other sister on the following day to let them know.
I underwent initial health checks including blood tests, a chest x-ray and ultrasound so the medical staff could assess my general health. I was offered the opportunity to take part in a clinical trial and I discussed the pros and cons with Adele, as wells as with the haematology consultant and clinical trials co-ordinator. I agreed to the trial and I was selected to take part in the AML19 trial. We were told this was essentially the standard treatment, but with some additional drugs and done over seven days rather than the usual 10. I was told to expect to be in hospital for a few weeks. Further treatment would be needed later, dependent on the effectiveness of this first lot.
On Monday 4th December, I had a Hickman line fitted ready to start treatment.
Unfortunately, I started with some form of infection with a high temperature, so treatment was stalled and I was put on intravenous antibiotics. After a few days, the infection wasn’t really improving, but wasn’t getting worse either, so the consultant, having discussed my condition with the clinical trials team, agreed that there would be no benefit to holding off on treatment. The treatment started the following day.
The side effects of the first lot of treatment were horrible. I was enduring spikes in temperature coupled with severe shivering. I lost my appetite and generally started to feel unwell. I was given different medication to help with the nausea. My ankles and feet swelled and the skin surrounding them became sore and inflamed.
Blood and platelet transfusions were given along with all sorts of various intravenous fluids, antibiotics, antifungal medicine, eye drops, mouthwashes and anti-sickness drugs to try and keep me as well as possible.
I was fortunate enough to share a room with a couple of other chaps, one with AML and the other with lymphoma. The three of us hit it off well and were all suffering similar side effects of our treatment. We supported each other through the worst by sitting with each other and talking when one or the other of us was really struggling. We laughed things off as best we could, sharing stories and jokes. The staff were great too, friendly and jolly having a bit of fun with the three of us. This certainly helped on an emotional level.
I also tried to keep as active as I could by walking around the corridors to the unit (swollen feet permitting!).
Time went on and my neutropenia levels dropped as the chemotherapy drugs did their job – attacking the cancer cells and taking with them any good cells too. This meant that I was very susceptible to infections. At this point, I was moved into a single room to recover sufficiently before I could be allowed home.
At home, Adele and the boys tried to carry on as best they could, getting Christmas shopping done, putting up decorations and trying to get into the festive spirit (whilst also looking after Jed, our family dog who was himself undergoing cancer treatment too). Determined to make the best of it, Adele and the boys decided that if I wasn’t well enough to come home on Christmas day then they’d bring Christmas to me instead. They fully intended to spend the day with me in hospital.
Fortunately though, I was allowed home on ward leave for the afternoon on Christmas day. Although I felt pretty awful, I tried to make the best of it. However, later that day, my temperature spiked and the family took me straight back to hospital. I’d picked up yet another infection. Bloods were taken and cultures prepared to help to pinpoint what the new infection was. I was given a whole host of other antibiotics to try to combat the infection.
After several days of feeling pretty awful, the results of the blood cultures came back, indicating that my Hickman line was infected. The line was quickly removed and a second one implanted into the other side of my chest to allow my care to continue as efficiently as possible.
A bone marrow biopsy confirmed the great news that I was in remission, although further treatment was needed to ensure I stayed that way. I eventually came home early January to recover as much as possible. I’d lost a lot of weight and was exhausted. Being in a hospital bed and the lack of exercise meant my muscle tone had gone and walking even short distances was difficult.
At the end of January, I was re-admitted for my second round of chemotherapy. With less drugs involved than the first round of chemotherapy, I tolerated it much better and was out of hospital after 10 days.
A further biopsy towards the end of February confirmed I was still in remission and that the risk of return of leukaemia was medium, but at the low end of medium from the scoring criteria used as part of the AML19 trial I was on.
This essentially meant that a stem cell transplant would not be needed. I had not got a sibling match anyway, so the risk outweighed the benefit.
The leukaemia consultant I was under talked to me about the next stage. I had a choice to make – to stay on the clinical trial path or opt out. If I stayed on the clinical trial path, I would be randomly given one of three options – no more chemo, one more round of chemo, or two more rounds of chemo. I was concerned about having the ‘no more chemo’ option presented to me, as there was no proven track record of survival rates. Given I had coped pretty well with the treatment so far, I chose not to follow the trial path and elected for two more rounds of consolidation chemotherapy.
March – May 2018
Both of the consolidation rounds of chemotherapy lasted for five days and I was admitted to hospital for a week each time, the first one at the end of March.
I picked up infections due to low immunity and was in and out of hospital in between treatment to have intravenous antibiotics and antifungal drugs. The worst infection caused temperature spikes of up to 41 degrees. The cause was a fungal infection in my chest. I was allergic to one of the antifungal drugs they tried on me, and whilst my infection levels were starting to improve, I began hallucinating and wasn’t sure where I was. Once this was switched for an alternative, I started improving and was allowed home.
At the start of June, I was devastated to learn that the two friends I’d shared a ward with during my first round of chemo had both sadly passed away within a few days of each other. One was 66, a husband, dad and grandad. The second was just 25 and had been battling lymphoma for the second time in two years.
My consultant appointment on 6th June reviewed the results of my latest marrow biopsy and confirmed that I was still in remission. I would need another bone marrow biopsy before my Hickman line could be removed.
Following a further bone marrow biopsy at the end of June, I went to see my consultant who told me there appeared to be what he described as being a ‘blip’ in a cluster of cells that they wanted to keep an eye on. This meant monthly blood tests, consultant reviews and another bone marrow biopsy in August.
The consultant wasn’t unduly concerned about the ‘blip’ and arranged for my Hickman line to be finally removed on 26 July.
So far so good
We are aware that statistically there’s a 50/50 chance of the leukaemia coming back in the first 12 months of remission. With each year that passes, the odds will improve.
So, seven months in remission and things are looking positive as my fitness continues to improve.
We have been on a rollercoaster ride emotionally, dealing with not only my illness and the death of two friends, but also of our beloved dog Jed, who sadly lost his fight against cancer on 16 July.
Two days later though, we were able to celebrate with our eldest son Josh as he graduated with a First Class Honours in Product Design Engineering. Given what we’ve had to go through, it shows how resilient we are.
Whilst this has been the worst nine months of our lives, we’ve come through it by supporting each other and with the support of close family and friends. The staff on the cancer ward did a great job – not just with the physical side of my care, but by being so kind and supportive, they’ve helped on an emotional level too – more than they could ever know.