Diagnosis – April to May 2014
I was 40, enjoying married life with three young children aged 5, 9, and 10, looking at moving house, had worked around the world, achieved lots, and was looking forward to doing a lot more in life.
Then whilst on holiday I had a raging fever, and felt exhausted. I got checked for malaria, and got my UK GP to refer me to the local medical triage unit. After spending a day there every week for three weeks they decided I had had Dengue Fever.
I may well have had that at some point hence some antibodies showing, but I still felt ill, and was getting a lot of UTIs. My bloods were also not recovering as they should. I went through three GPs at my local surgery, with the suggestion from them being that I had always been a bit neutropenic. I became a bit more expert and realised ongoing neutrophil levels of 0.5 were not great news. I saw a tropical disease specialist who commented that maybe I should see a haematologist – thanks to him I asked the final GP I saw whether we should consider this.
Getting referred was slow, and by now I was feeling tired; something in my voice must have convinced the appointment booker I spoke to to give me an early appointment, and I was seen a few days later, on May 7 2014. The haematologist took bloods, and that evening I was told it was likely I had acute myeloid leukaemia. A bone marrow biopsy followed the next day, and AML was confirmed.
The diagnosis was scary, but at least now the system that we have in the UK started to work. I decided early on to be part of every trial that I could, so that at least some good would come out of this horrible situation. We saw a specialist nurse and consultant, of course not much made sense on the first day, and we focussed on the initial priority, which was how to tell our children. My wife and I dropped in to a Macmillan lodge and were greatly helped in finding out how to do this. Telling the kids was the hardest thing I have had to do, but they took it in their stride and we found that being open with the early on was the best thing for us to do.
Treatment then started four days later on the Monday. I was really mentally ready for this, and was disappointed to have to wait until the second day for my first chemo. My first cycle lasted 10 days, with a total of a month spent in hospital. I got two infections and learnt how to recognise when these were coming on, often before they were clinically diagnosed. I had about 10 units of blood and 4 of platelets. I got some sores on my body but thankfully did not get mouth ulcers (odd, I normally have them all the time). Over time my bloods started recovering, and good news came; a bone marrow biopsy confirmed that I had got remission on the first round of chemo. Cytogenetics on the earlier samples showed me as having AML16, and my treatment was tailored to this.
I learnt that customised treatments are one of the major steps in treatment in the last few years and are leading to better outcomes. It is still tough, but more hopeful than it was.
At the end of cycle 1 I left my room on the ward. I was weak, I had lost my hair, but even seeing the wild flowers growing outside the corridor window was a joy.
Cycle 2 led to me having a medicine that specifically attacks the leukaemia affected cells. This was part of the trial, and I felt terrible that night, but got through it and hopefully it has done its best. I got a further infection (why do these always come at night?), had more blood transfusions, and was pronounced ready to go home for 10 days rest. Before I went a team came in and discussed the number of cycles of chemo I should have. This used to be 5, is sometimes 4, and as part of the trial could be 3. The idea is to reduce the number of courses to the minimum to reduce long term impact. This was a tough one, and not something the doctors or I could make a clear decision on – more information is needed. I decided with the doctors to go for the randomised trial on this so at least some good could come from the decision.
Randomisation came up with 3 courses for me. I immediately felt worried; what if 3 is not enough?! I discussed this with the specialist nurses and doctors, apparently someone else had been given 4 in the randomisation and was also worried. At the end of the day we do not know, we have benefitted from previous trials, and we owe it to those who come after us to carry on through with this. It is a tough one but I elected to stick with the trial.
Cycle 3 passed quickly, and I avoided infections, probably helped by spending most of my recovery time at home this time. My neutrophils again went down to 0.0, haemoglobin went down to 10, lots of blood followed, including on my birthday, and I was still weak.
So I’ve finished right?
In mid August I finished treatment, relatively quick! At the end of August we went on holiday in Cornwall. I was exhausted, but felt we should do it for the kids as we do not know what the future holds. We also had a wonderful party for family and friends basically to celebrate having got though this, thanks mum and dad and everyone who came to it.
A check up followed, and confirmed that haematologically I was normal, but the consultant warned me that recovery would take a while.
I was quite concerned about my ongoing fatigue and the fact that my short term memory was shot. In addition I felt ‘flat’ and did not have any elation at finishing treatment. I saw someone at Macmillan again, who reassured me that this was very typical and that I was doing all the right things. Just being told this was great!
I have taken up pilates and walk a mile or two regularly to try and get my body working again, and am staying active. I am in a Macmillan moving on group, which is giving some great ideas and perspectives, helping pick up where the treatment cycle has finished. One of the features of AML is due to the isolation that you do not meet many other patients; sitting down with others who have been through similar is I find really helpful. The group has also proved useful in telling one not to do too much – I have always felt guilty if I sit down!
The biggest moment for me came last week, when I had my first hair cut, of my new thick and wavy hair (chemo can have a positive!). In doing this I felt I changed from a patient to being in the normal world.
I am still really fatigued and my immunity is poor, but am off to our office for the first time since May in two days time, so I can achieve another milestone. Recovery is definitely going to take a lot longer, plus there is always that nagging doubt of ‘is this thing really beaten?’, but I am resolved to get on with life. We have already booked our holiday for August next year, and the fatigue does mean I can spend more time with the family (be positive!).
I am thankful for the dedication of all the NHS team who treated me – they are superb. The NHS gets a lot of knocks, but once diagnosed with something like this it is there for you. My family, and in particular my wife, have been great, in something that was probably as tough for them as it was for me. Well done everyone!
What would I tell others?
In summary for any other patient I would say:
- Each case is different. Listen to and ask your doctors about anything you have a concern on
- Take things day by day and week by week
- Stay off Google or use it with great care; much of the information around for example survival rates is badly out of date. The pace of progress on outcomes is fantastic, though we are not yet there. If you need a clear answer ask your Consultant, mine was very helpful yet realistic
- I was worried about how my family would do. They have handled it great, and I am sure whatever happens in the future will be fine. This has left me free to focus on getting me better
- The end of treatment is not the end of the story; it takes time to recover. Get those around you at home and work to give you time to get better, and be realistic in goals you set for yourself. Use local support resources if you think they might help.