Michael's BPDCN story

This all started when I was 57 years old. My wife and I had lived in Wales for 12 years but decided to move home to Northern Ireland and take life a bit easier in March 2021. We bought a house and were in it 6 weeks before I had a heart attack and had to give up work as an HGV driver.

Then, to keep me on my toes, I had a gallstone attack on 29th December which led to a few nights in hospital. The gallstones were badly infected, but it was too soon after the heart attack to do anything, so I still have the pleasure of their company to this day. 

I was called back to hospital on 21st January 2022, where they fixed my artery and inserted a stent. I then had a medical to get my HGV licence back. Around the same time, a lump appeared on my head. During my appointment, I asked the doctor about it, but he said it was only a cyst. The lump wasn't sore, so I thought it was fine.

However, while we were on holiday, I got a sharp pain in the lump. I phoned the doctors, and when we returned home, I got it checked out. They’d never seen anything like it before. It was like a small poached egg on my head, and one of the doctors took two small biopsy samples of it. Four weeks had passed, and still no results. I then had to go back to the doctor to get a bigger sample taken for further examinations. 

I phoned for the results on 9th May, where I was told I have blastic plasmacytoid dendritic cell neoplasm (BPDCN). I had no idea what it was. He mentioned it was a type of leukaemia, but everything went over my head. My daughter Claire, who had done haematology training, came with me to see more doctors. We were told it's a very rare cancer, and I was only the second case in Northern Ireland. I was going to be referred for chemotherapy, and photographs were taken for progress reports. I also had an ECG to check my heart was okay and I had a PET scan booked in for a few days later.

When you get told you have cancer, it turns your life and your family’s lives upside down. Doctors and nurses tell you what to expect, but to go through it is completely different. Nobody can prepare you for the journey ahead, and the feelings you will have. I have never gone through anything as mentally challenging in my life before. It gives you a whole new direction and outlook in life. 

The additional kicker was my boss had kept my job open for me, and I was due to start the following week when I got this diagnosis. Unfortunately, I never went back to work. 

After getting my diagnosis, my family decided to take me to see the new Top Gun film as a distraction. However, within 10 minutes, a pain started near my gallstones, and I ended up back in hospital. I’ve never felt pain like it. I thought my heart was going to burst. We were there all night and got home about 6:00am (and no Top Gun either). 

On Friday, the phone never stopped. I was glad for when the weekend came. No hospitals, or doctors, or anything.

The next week, I went back to hospital where I got a bone marrow biopsy done. Fortunately, it wasn't too bad. The next day, the phone rang as they’d managed to squeeze me in for a lumbar puncture. And about 20 mins later, the phone rang again. It was Annie from Belfast hospital who confirmed they had a bed ready for me on the Sunday to start my chemotherapy the next day. The rest of that week was a blur.

When I got admitted to the ward, the staff were lovely. I got settled and that was me until I met my consultant and chemotherapy started. My treatment plan was three 28-day sessions, with 10 days in hospital and 18 days at home. This would be followed by a bone marrow transplant and, hopefully, I would be all good. 

The chemotherapy went well with few side effects, just the odd infection here and there, and a sore stomach from the injections. On the 24th August, I got the results from my PET scan to say I was in full remission. What a day. Words cannot describe how you feel getting the news that the cancer is gone. I finished having five sessions of chemotherapy, lasting 145 days.

After having my transplant postponed after complications with my brother as my donor, they eventually changed my donor to another of my brothers and the transplant was scheduled for November.

Transplant day rolled around, and everything went okay, but it went downhill from here. I’d never been this sick in my life. I got an infection after the transplant, and they couldn't get to the bottom of it. Eventually, they found that I had HLH, which is rare and can be fatal. Luckily, I was over the dangerous stage.

On 18th December, I felt a change, and I started to feel better. Although there were still no major improvements on my numbers, I was optimistic and there was a possibility of going home for Christmas. Annoyingly, things didn’t go to plan. My numbers were not climbing as well as expected so I couldn’t go home. 

The ward was strict as Covid restrictions had not long been lifted, and because of patient vulnerability. My daughter wasn't allowed in, or to even pop her head through the window to see me. To see a family member on Christmas Eve after everything I had been through would have meant the world, but it wasn't allowed. 

All things considered, I did have a nice Christmas. I had one of the nicest dinners I could ask for, and I ate it all. Everyone was given a goodie bag, which was lovely, and appreciated. But I was glad to see the end of 2022. New Year, new start. 

On the 11th January 2023, the magic day had arrived. 65 days after the transplant, I was going home. I was a little scared and my energy was awful. If anything went wrong in the hospital, a nurse was there, but at home, I was going to be alone which was terrifying. 

Everything was going fine except for my platelet levels; I continued to have transfusions all the time. The odd infection appeared here and there, but was dealt with, and the usual biopsies and lumber punctures were done. 

Despite this, I was eventually told I had no bone marrow. I wasn't expecting this. It turned out the ongoing HLH had wiped my donor bone marrow. It was completely gone. 

Sadly, March was also a crappy month, made up of more bugs and infections. And in June my numbers took a nosedive again. It felt like one step forward and three steps back. You get fed up with it, but you must keep fighting. The same thing happened again in July. I was kept in for a few days to find out what was going on.

Then, in August, I had a reaction. It was not a good experience. It turned out it was the booster I was taking to try and increase my platelets. To make things worse, it turned out my transplant had failed completely now. I needed another transplant, and I was on boosters to try and keep my numbers up. It never stops.

In September I was admitted again with another infection. The nurse came into my room, all geared up. You would have thought she was coming into a nuclear war or someplace like it. I asked if it was all necessary, and she told me I had a respiratory virus. It must have been serious. I thought, what more could they fire at me?

October rolls around and the platelets are playing up big time now. Surprise, they were keeping me in hospital to try and get to the bottom of it, and I finished being there for three weeks, with still no answers. I ended up getting Covid in 10 North and I was in isolation again. You couldn't make it up. 

I lost a good friend while I was in isolation, and I wasn't able to see him. That hurt a lot and took a while to get over. I tried to keep his spirits up, and for some reason or another, he looked up to me and said he wished he had my spirits. 

In December, we finally got the reactions stopped after a long battle. They put me on the Zarzio booster for the platelets. The boosters weren’t helping the platelets much at all, but they kept at it. 23rd December was my last appointment for the year. I was so looking forward to being home for Christmas after last year. I was glad to see the back of 2023. 2024 had to be better. It was nice to spend Christmas at home with the family. 

Things were good over Christmas and the new year. My platelets continued to be my biggest problem over the next few months as they kept jumping up and disappearing, but everything else was good.

In April 2024, we had good news and not so good news at the hospital. The platelets had reached 44, making progress at last. However, the bombshell news was that my bone marrow wasn't able to work properly, and I was diagnosed with lymphoma, so we needed to do the second transplant. This took a while to sink in. I knew what to expect, but I knew all the downsides to it as well. 

At the end of July, I was back in the hospital for my second transplant. To start, I had five days of chemo. Some of the sessions ended up leaving me feeling sick and not being able to eat or drink, but we got the chemo finished, and I was happy. 

At the beginning of August, I had my transplant done. After the first week, we were delighted with the way things were going. Eating was going well, no signs of many numbers yet and a few side effects, but that was to be expected.

After 15 days, the numbers are good enough to let me out of isolation and have a walk around the ward. I was absolutely over the moon with that after such short a time, compared to waiting 59 days after the first transplant. Although my platelets messed me about again, I was eventually allowed home. I was delighted and emotional. 

Towards the end of the year, everything was still going well with no serious complications. We had a nice Christmas with the family, and everything felt good again. 

2025 began and we started another year as we mean to go on. I’m still careful about everything, not going into crowds, or being near anyone who is sick, and wearing a mask. After three years it gets frustrating, but it’s for the greater good. 

In March, my numbers were doing okay. My platelets were 118 (still low but a high for me) and my hospital visits changed to every three weeks. I never thought I would be saying that, but here we are.

In June, I caught rotavirus and was hospitalised for 15 days. I went from 85 kilos to 73 kilos in 10 days. But there was only going to be one loser in this battle, and it wasn't going to me.  

The main thing in this fight for everyone is to try and stay positive. It can be hard, and there were certainly dark days along my journey, and days you want to give up, but there's too much in life to live for.