Bob McCaul

Bob McCaul was just 35 when he was diagnosed with acute myeloid leukaemia (AML). Following months of symptoms, it was a painful mouth infection that finally prompted him to see his GP, and just two hours after his appointment he was rushed to a haematology ward with suspected leukaemia. Now in remission, Bob is sharing his story.

In June 2017 I was diagnosed with acute myeloid leukaemia (AML). The signs were there for months, maybe longer. I had bruising on my arms and legs which I put down to carelessness on site, and cuts which never healed properly. Towards the last couple of months before being diagnosed, I was getting very dizzy…. up on the scaffold! Again, I put this down to other things: not eating properly, working six days a week and some lifestyle choices. Then eventually I got an infection in my mouth, so I went to the doctors for antibiotics. They asked if they could do a blood test as well. Two hours later, I got a phone call from them saying I was anaemic and needed to go to Coventry, and that there was a bed waiting for me on the haematology ward. After a lot of persuading I still wasn’t keen to go, but then she said, “We think you might have cancer.”

At UHCW, they gave me blood straight away as I was dangerously anaemic. Then I had a bone marrow biopsy which confirmed I had leukaemia. That was the beginning of a three-month battle by a dedicated team to get rid of the cancer with chemo. The best chance of stopping the cancer coming back would now be a stem cell transplant. For this I needed to go to Birmingham.

And that brings me to ward 19 and another dedicated team that made it feel less like going to hospital and more like going to visit family. With my consultant, clinical nurse specialist and the whole team who are experts in stem cell transplants and patient care, I felt I had the best team on the case and knew I’d always have their incredible support and guidance.

They found me a donor very quickly through Anthony Nolan who register people to the stem cell donors register. A Polish man living in Germany was an exact tissue type match for me and he very generously donated enough stem cells to put me on the road to recovery. One day I hope to meet him, but for now I have sent a message letting him know how things are going and how grateful I am for his gift of a new life. Whilst on this road, I’ve met many incredible people: ward 34 at UHCW, the Rigby and Aylesford units in South Warwickshire, ward 19 at Heartlands, as well as of course all you guys that have been there on social media and on the ground providing support and encouragement along the way.

Then in the recovery time I started looking a bit further into it all. I went with a few of the ward 19 team to see one of my doctors give a talk about blood cancer. There I met Amy, one of the very dedicated volunteers from DKMS—they go out to events and sign people up to the stem cell register and raise awareness about blood cancers and other conditions that could be helped by this treatment. Without people like those on the register, things could have been very different and there’s potentially thousands of lives that will be saved in the future thanks to them. So, I signed up as a volunteer and have loved working with them ever since. I would love to sign up as a donor, but my blood is a bit complicated now. If you are between 18 and 55, please check if you can register, it’s so simple to sign up and you could one day in the future save a life like mine.

The next big step was improving my strength and stamina, researching diet, eating the right foods at the right time. Sometimes a lot of weight would drop off due to treatment but knowing a few tricks that would put it back on fairly quickly meant I didn’t worry about the weight loss. Drinking lots of water was one of the biggest things; water helps get rid of anything that’s not needed in the body. A friend told me about Pilates, so I started there. Eventually I decided to join a gym, where they again have a great family feeling to the place. With a few extra emergency procedures like contact numbers for people on my ward and strict instructions for ambulance and other medical staff, I felt very safe.

During one of my stays at ward 19, I met someone from Leukaemia Care, a charity that makes things as comfortable as possible for patients and those around them. I joined their buddy scheme and started to speak with some patients who were going through treatment. Then, realising I really enjoyed patient care, I decided to look into it as a new line of work and now work in the NHS as a clinical support worker after my work on building sites had to stop. I tried to go back in 2018 but didn’t last long due to ongoing treatment. I struggled with my mental health a lot too but had a great team of friends and professionals so that got fixed pretty quick.

Thankfully, I have been in remission since the chemo; I’m told I was at high risk of it coming back but the transplant was the best chance of staying in remission. If I had known the symptoms of blood cancer, I would have gone to the doctors a lot sooner.

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