Why I became a multiple myeloma patient advocate

Imogen Coupe|6th March 2020

Every 20 minutes someone in the UK is told they have blood cancer. In February 2017, at just 41 years old, Peter McCleave was told he had multiple myeloma and was given seven years to live.

As an Ironman triathlete with no history of previous illnesses, his diagnosis was not expected. BLH speaks to McCleave to find out how he has fought to remain positive throughout his treatment journey while simultaneously leading a successful campaign to get more people to sign up to be a blood stem cell donor.

Multiple myeloma is a type of bone marrow cancer that often affects several areas of the body, such as the spine, skull, pelvis and ribs. According to the NHS, in the early stages, myeloma may not cause any symptoms. It’s often only suspected or diagnosed after a routine blood or urine test. The typical treatment journey for people with multiple myeloma, a disease for which a cure is yet to be found, is a series of chemotherapy treatments. Patients receiving intensive chemotherapy treatment will need an autologous stem cell transplant (transplants using the patient’s own cells rather than a donors).

Autologous stem cell transplants allow the healthy bone marrow that is affected by intensive chemotherapy treatments to recover. In this form of stem cell transplant, the stem cells are harvested from the patient themselves, damaged or diseased cells are removed and later the cells are returned to the same patient. Allogeneic transplants, another type of treatment, are when a patient receives stem cells from a matching donor.

Husband and father to two young boys, McCleave tells BLH about the care he has received, his autologous stem cell transplant, and why it is important for patients to play an active role in the treatment process.

What were the symptoms that lead to your diagnosis?

Peter McCleave: I was training to do a triathlon in the year leading up to my diagnosis, so I associated all the aches and pains, coughs and colds, with the training. The striking change in my health was the night sweats. I’ve never had them before and then suddenly I was waking up in buckets of sweat. I still didn’t think that was anything sinister. The thing with blood cancer is the symptoms are quite innocuous.

I ended up in hospital after completing the triathlon with pneumonia and sepsis and legionnaires in September 2016. I’m lucky that I got over the sepsis and pneumonia and that the doctors were looking closely at me even after I was discharged. They were tracking the breathing problem I had due to the scarring on my lungs. A CT scan of my lungs the following year in February 2017, picked up the lesions on my skeleton. Within a week of that a blood test was taken and I got the diagnosis.

What happened after you were diagnosed?

PM: It’s all a bit of a blur. There was a short gap between being diagnosed and being thrust into the system of cancer care. I was not the sort of person to demand support from anyone and I tended to shy away from those support services. I wasn’t going to turn my back on them, but I didn’t want to be a part of it. I had to deal with it in my own way and get to a point where I could engage if I wanted to.

How have your family and friends been affected since your diagnosis?

PM: It was hard in the early days. My wife Jenn and I tried to normalise it for our two young lads that have gone through it with us. They know much of what’s going on because you can’t hide why you’ve been away in the hospital. We would have picnics on the bed when they visited, and the nurses would make a fuss and give them treats.

My mum and dad found it harder because as a parent you want to look after your kids. I’ve got an awesome network of friends. They make meals for Jenn and the kids if I’m away.

“I focused on the things that are within my control and life became a little pleasant again”

Did your doctor establish a treatment programme right away?

PM: No. My GP gave me the diagnosis and I was told to expect a call to start the process of cancer management. It was a swift turnaround, from getting the diagnosis to being at the Countess of Chester Hospital and then straight into a treatment plan. I think it was more of a one-way street because I was still in shock. I didn’t have that much to offer anyway because I didn’t understand the disease. The conversation at that point involved them explaining the chemotherapy plan and me asking questions to understand what it meant.

It was at least six to nine months into the process before anyone mentioned stem cell transplants. It was only because I was going through the chemotherapy at a much swifter rate that they mentioned it at all.

I got the impression that they didn’t want to overload me as a patient with lots of information. Although, the one thing we were all tracking together is the paraprotein number. That number became my focal point to determine how the disease was being managed.

Did tracking the paraprotein number have an impact on you psychologically? 

PM: You can fixate a lot on that number as much as the doctor tells you not to. I’m now at the stage where I’m still in the cancer care system but you can’t waste your days, weeks and months fixating on that number. When you move beyond it, you accept it as being a part of your life. Then it allows you to reset your norm and start to live your life again.

That was a big milestone for me. I didn’t think I’d be able to come to terms with having an incurable illness, but I’ve let go of things that are out of my control. I focused on the things that are within my control and life became a little pleasant again. I accept the likelihood of what will happen, and I just need to take advantage of every day rather than thinking too far ahead. I might have an illness, but I’m not the only person in the world with an illness.

How did you find the transplant?

PM: I found it mentally challenging because to be told you must be locked in a hermetically sealed room was just awful. You can’t see your friends and family. The medical staff were great at trying to alleviate the frustrations that go along with it, but I had to find things to do.

I wrote and did interviews, and I got an exercise bike in to maintain some level of fitness. I’m not sure if my situation was different to others but sitting in a bed wallowing in self-pity is never going to help from a physical perspective. I’ve tried to stay as physically active as I can throughout this process. When I was in that room, I tried to make a routine for the day.

“Be responsible for yourself, don’t be a passenger, don’t be a victim”

How did you stay positive?

PM: I went through the stage of asking, “what have I done to deserve this?” But there is nothing special about me to make me immune from the nasty things in life. When I accepted that, I stopped battling things I can’t fight against and found a way to let go of all the frustration and anger.

I would never be as condescending to tell people what they need to do because they need to get to that stage in their own way, but I would say there is a life you can aim for. It might take people weeks, months or years, but just being told that you can readjust is quite a powerful thing.

How you get there is entirely up to you. I struggled with the knowledge that I had to have chemotherapy. But when I adjusted my thinking and said, “Right, I must have the chemotherapy, it’s going to be unpleasant. I’m going to have a bald head.”, it was cathartic.

When I was told about the stem cell treatment and that the chance of finding a stem cell is quite low, that gave me something to focus on. I wanted to get more people to sign up to the stem cell register.

How did you learn more about multiple myeloma?

PM: I’ve learned about it as I’ve gone through this journey. I did try to find out stuff in the early days and all you get is outdated references. There were small pockets of solid information, particularly in Myeloma UK leaflets, but there’s not enough out there. I stopped looking at the internet. I began to rely on the professionals that are in the thick of it.

More can be done to educate people about blood cancer. When you don’t have a lump or a bump to fall back on as a prompt to go to the doctor, you must be aware of your own health. If my kids are unwell, I don’t waste any time in getting them checked out. But with myself, I’m much more blasé about it and I think most of us are like that.

How important is the relationship between the consultant and patient?

PM: The medical professionals are phenomenal human beings and they have the answers. However, don’t waste time being polite if your consultant is not the right fit for you. I switched from one of my consultants who I didn’t connect with. Building trust with your consultant is important. I have two now, one in

Manchester and the other in Chester. I feel like I have the best support team, along with the nurses. We know because of the nature of myeloma that it will become resistant to chemotherapy quicker than we would like. There’s also a finite number of treatments available. The consultants understand the difficulties I will face, and they help me to navigate that. Trust is key but be responsible for yourself, don’t be a passenger, don’t be a victim.

How to sign up to the stem cell register: 

1. Fill in an application form online with your personal details on the Anthony Nolan (if you are aged 16-30) or DKMS (if you are aged 18-55) website.

2. Receive a swab pack in the post.

3. Swab your cheek and send the completed swab pack back in the post for free.

4. You are added to the stem cell register.

5. You’ll stay on the register until you’re 61. If you ever come up as a match for a patient, the charity will get in touch, so it is important to keep your details up-to-date. You can find more information here.

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