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What is it like to be an Online Community Champion?

  • Steve, can you begin by telling us a bit about your own stem cell transplant. Why did you need a transplant?

I was diagnosed with Acute Lymphoblastic Leukaemia (ALL) in 2012. I’d been feeling tired, getting breathless and having cold sweats for some time and something didn’t feel right. There was a diabetes awareness campaign at work and I thought the symptoms sounded like what I was experiencing, so I went to my GP to check.  

At my local hospital, they took more blood tests and carried out a bone marrow biopsy. They told me I had leukaemia and did more tests to establish what type. Having seen the blood cancer leaflets around the waiting area, I half expected the result, but it was still a huge shock.

They told me it was ALL and that I was to report to a hospital in Leicester the following Monday and take an overnight bag! So that’s what I did, and I ended up starting my first chemotherapy session the day afterwards, on the Tuesday..

They could confidently say that I could be cured, but because of my age (I was 46) I was at a high risk of the leukaemia returning. That’s why a stem cell transplant was discussed from the early days.

  • How was the transplant process for you?

The early stages of treatment were good and I tolerated the chemotherapy well. I was on steroids, eating well and gained quite a bit of weight, which was good as I ended up losing a lot of weight later on. After about three weeks, I was allowed home for a few days to the great surprise of my sons.

As the hospital was about 30 miles from home, my wife and my sons came to see me on a weekend, though we would telephone or skype every day.

The strange thing was that the transplant unit I was treated in was one that I had helped design as an electrical design engineer many years before. I remembered working on the drawings and watching the transplant rooms being built, so it was odd to now spend time in the unit as a patient.

The chemotherapy got me into remission within the first month, but it gradually got harder as the treatment continued, making me sicker and weaker.

After about two months of treatment, I was told that a donor had been found, which came as a big relief, but I was nervous about the transplant.

My transplant was surprisingly straightforward. I’d already had some blood transfusions during my treatment, and the transplant was actually very similar to a blood transfusion. It took about three hours late in the evening to transfuse the cells into me.

The first couple of days after the transplant were ok, but then the effects of the final chemotherapy kicked in and made me poorly. I was really sick and could barely eat so I became weaker.

I spent about three to four weeks in hospital before my new cells had started to form and the counts of the red and white cells started to climb enough for me to be allowed home to continue my recovery.

  • How has your recovery been?

The early days of my recovery were tough. I don’t think anyone realises how long it takes to get over a stem cell transplant until you go through it. I spent much of my time in bed and was too week to climb the stairs normally.

The rest of my recovery was slow, but gradual, regaining my appetite, then my strength. It was probably about six months after my transplant that I felt things were getting more normal. And then about a year before I started to feel that I was close to how I had been before.

My recovery was slowed down as I developed Graft versus Host Disease (GvHD). This affected my skin, which became dry, flaky and incredibly itchy.

The GvHD was eventually cured by a course of treatment called Extra Corporeal Photophoresis (ECP).

  • How did you become aware of Anthony Nolan’s Patients & Families Forum?

I saw a post on Facebook from Anthony Nolan describing the new Patients and Families Forum, so I registered straight away. This was about a year after my transplant, so it was useful to communicate with other patients about their experiences.

I hadn’t come across any such forums for patients before the Anthony Nolan one, and had no means of communicating with other patients in the same situation until then.

  • Do you think it’s helpful for people to share their everyday experiences of going through and recovering from a stem cell transplant?

It’s really useful and I wish the Forum had been around when I had been going through my transplant. While you’re in hospital in the early days, you can talk to other patients in the ward. But when you’re in isolation or recovering at home, you lose touch with people who understand what you are going through.

It’s comforting to share experiences with people going through the same process and understand how it affects them. We are all different, and whether it is in the hospital or on the Forum, people are having treatment for a variety of conditions.

As far as the transplant stage of the process goes, it’s the same from one person to another, but the way we react and recover varies between us. Some people have a really straightforward recovery, while it can be really tough and complicated for others. We are all unique so it affects us in different ways, but it’s surprising how familiar some of our encounters can be to each other.

The beauty of the Forum is that, while all of our experiences are different, there is usually someone on there who has gone through the same and can share their knowledge or support to help and give advice on how they coped. I think it’s useful for a patient to know that what they are going though is not unusual and that it can and does happen to others. It’s also important to show that  much of what we go through is temporary and it should get better.

  • What encouraged you to become involved as an Online Community Champion?

Not long after I joined the Forum, I saw a post on Facebook calling out for members to act as Online Community Champions to help moderate the Forum and promote discussion. At the time, I was still working from home on light duties so had some spare time available to commit to helping where I could.

Having gone through a transplant and largely recovered, I felt I could be useful in supporting those who were now either facing or going through a transplant and helping them get through the process and recover like I did.

I’m so grateful to Anthony Nolan for finding my donor and giving me a second chance of life. I’ve raised money for Anthony Nolan, including climbing Mount Snowdon (on two separate occasions) and completing a 12 hour cycling marathon. But volunteering on the Forum has meant I can make a difference directly to patients.

  • How has your experience as an Online Community Champion been so far?

I find it really rewarding. There is no better feeling than when you reply to someone who is uncertain about what they, or a loved one, are going through and you get a reply thanking you and telling you your response has made them feel better and less alone. It’s good to know you might have helped that person get a little bit further down the path of recovery.

Generally, the Forum is full of success stories. It’s good to read updates from patients or their family members who were uncertain earlier but have overcome their concerns thanks to the Forum and are getting better. We have a number of posts from patients and families that give details of successful transplants many years ago, which can be really encouraging for those of us that are younger in our post-transplant lives.

Unfortunately, there are some stories that have a sadder outcome and I have seen a small number of patients on the Forum whose illnesses have returned, and they have relapsed. For many, they end up going through further treatment and often a second transplant which often works, but unfortunately not for all, and there are a small number who haven’t survived.

This acts as a reality check and it reminds us that even now when the outcomes of transplants are getting much better, it doesn’t always work for everybody. It always reminds me how fortunate I have been to have returned to a comparatively normal life.

  • You are so supportive on the Forum and I know many patients are incredibly grateful for your input. What are the main things you consider when you’re replying to posts?

I think the main thing is about being compassionate for the patient you are replying to. The benefit is being able to see things from their perspective and to understand what they are going through and how they are feeling, by having gone through that process myself.

Regularly, someone will ask a question about something I don’t have direct experience of, or have a different kind of illness to what I had. But I still make a point of replying to all posts to let them know that at least their post has been read, that someone is listening, and to offer whatever support I can, even if it’s just to sympathise with them.

Having been an Online Community Champion for so long, I can often remember similar posts which may help them, so I look them up and will post a link for them to read the original thread.

I can never offer medical advice and leave that to the Anthony Nolan Team themselves, particularly Hayley, the Lead Nurse in Patient Services team, whose experience and knowledge is fantastic. Where I hope I can help is by offering a supportive ear as someone who understands how it feels to go through a transplant.

I still try to log on to the Forum each day if I have a few minutes to spare and look to see if there are new posts or updates to discussions that I can contribute to. If someone new to the Forum posts a discussion, I think it’s important first and foremost to welcome them to the Forum, introduce myself and thank them for posting, then I’ll see if I can post a constructive reply to them.

I always try to sign off each response with a request that the poster keeps us updated as I think it’s useful for others to see that things do usually get better or that the discussion has helped the patient that posted the question. I know there are a lot of Forum members who don’t necessarily post on the Forum but do read the posts and the replies, so seeing an update from a patient can be really useful to them.

  • What would you say to someone who is thinking of joining the Forum or perhaps even becoming an Online Community Champion?

I’d recommend the Forum to anyone going through a transplant or treatment leading to a transplant as it is so useful being able to see how others have coped with the hiccups we face, and to get tips on how to deal with things like isolation, infection control, or coming home to recover. Whether you post a question yourself or just read through the discussion threads, the Forum is a great resource for patients and families going through transplants.

I would recommend anyone who feels they can offer help to volunteer. It’s not particularly time-consuming and can be very rewarding knowing that you may have helped someone get through a tough stage of their transplant.

If you are a patient or family member and you'd like some support, or to share your stem cell transplant experience, you can join our Patients and Families Forum. And if you and your family need support through a stem cell transplant, please contact us on: 0303 303 0303 or patientinfo@anthonynolan.org.

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