Steve had his transplant in 2013 to treat acute lymphoblastic leukaemia. He spoke to Billie in Patient Services about his experiences and preparing for transplant over the Christmas period.
Preparing for transplant
Tell me about when you were diagnosed with acute lymphoblastic leukaemia
I was first diagnosed in summer 2012. I’d been feeling unwell at work, not necessarily unwell but tired. I had some dizzy spells and sweating so I went to the doctors to get an ECG and a blood test which showed a low white cell count. I had a bone marrow biopsy the next week which showed I had leukaemia and I was admitted to hospital to start treatment pretty soon after that.
Was transplant discussed at a treatment option for you right away?
It was, I think it was always the plan. Due to my age I was at high risk of the leukaemia returning, so once they got me into remission, which was actually in the first month, the intention was to carry on towards transplant rather than maintenance therapy. And hopefully get rid of it once and for all.
Do you have any siblings?
I do, I have a sister who was tested in the first month and unfortunately she wasn’t a match.
What was it like waiting to find out if you had a donor? Did it take long?
I got the confirmation that they’d found a donor probably about two months after I started treatment so it didn’t seem to take long at all. It was such reassuring news to hear when they told me they’d found one.
So you had three months of chemotherapy in the run up to having your stem cell transplant in January 2013. What was the festive period like for you, did you feel unwell?
I was very unwell. I was let home from hospital fortunately just before Christmas around the 19th but I spent most of Christmas in bed. The chemotherapy that I’d had in that 3rd month had wiped me out. I came downstairs on Christmas day to have a little bit of Christmas dinner with the family but I was exhausted and had no appetite. I managed some food but I wasn’t up to it at all.
'They were surprised, shocked, and sad. It hit them quite hard. But they understood it. They listened well and they took it in. They were 10 years old at the time, so old enough to understand.'
You have twin boys, how did you talk to them about your upcoming transplant? Were they old enough to understand?
The day that I was diagnosed and told I had leukaemia we came home from the hospital and sat them around the kitchen table. We basically explained that I had cancer, that the doctors thought that they could make me better and that I was going to have treatment. Also that it could take a long time to sort out the treatment and to recover from it.
They were surprised, shocked, and sad. It hit them quite hard. But they understood it. They listened well and they took it in. They were 10 years old at the time, so old enough to understand.
Do you think your wife wanted the Christmas before your transplant to be extra special?
I think so; it was difficult because I felt so unwell. But I think she made it a bit more special for the boys, tried to make it up to them because it wasn’t normal. It wasn’t a normal family Christmas for us.
Were you worried about making it through to another Christmas after transplant?
I was still feeling positive about my treatment at that stage. I was anxious because I knew that straight after Christmas I was going back into hospital for the transplant. And I was nervous about that process because I knew the risks involved.
But all the way through my treatment I tried to stay positive. And the fact that they’d got me into remission - I was still feeling that I could hopefully beat it and the transplant would be a success. Christmas is a family time of year and not being able to get involved in the way I used to was very hard for me.
After the transplant
How did you find the isolation period after transplant?
I coped with it reasonably well. Because I was so exhausted I spent a lot of the time sleeping and watching TV when I was awake. I tried to use the time to rest and just waited and waited for that day when they told me my cell count was starting to climb again.
What was it like going home?
It felt really good. I went home three weeks after transplant and I didn’t expect to get home that soon. It was a positive feeling to be told that I was well enough to go. The disappointing thing was I got a virus the weekend I got home and was readmitted to hospital on the Monday which was really tough. It knocked me for six. I knew infections were a risk but to have one so soon afterwards and be back in hospital for another two weeks was such a blow. I ended up being referred to a clinical psychologist as they could see I wasn’t coping well mentally with this set back.
Once the drugs started to take hold to help shift the infection though, I managed to start feeling brighter in myself again.
Did you suffer from GvHD or fatigue? What treatments did you receive?
I suffered with fatigue for about five months by the time I really got back on my feet and started to get some energy. By that time I’d also developed GvHD. I had dry flaky skin, it was itchy and all over my body and face. I found it debilitating, I felt uncomfortable all the time.
The steriod treatment that I started initially for the GvHD actually also helped me to get back on my feet as it helped my appetite. Up until then I’d not been eating properly.
It also gave me some energy to start moving more.
You also received ECP treatment for your skin didn’t you?
I did, the steroids didn’t get on top of the GvHD eventually, and it needed more. So I was referred to Nottingham to start my ECP treatment. I had two sessions every fortnight then after about three months that was reduced to one monthly visit. I ended up having ECP for almost two years.
But it finally worked. It got rid of it completely. Occasionally I get a rash that comes back on my hands and I just use a steroid cream to treat it. Other than that, it’s gone.
'I think she made it a bit more special for the boys, tried to make it up to them because it wasn’t normal. It wasn’t a normal family Christmas for us.'
Volunteering for Anthony Nolan
Tell me a bit about the volunteering you do for Anthony Nolan as an online Community Champion
I’ve been a Community Champion on the Patient & Families Forum for three or four years now. It gives me an opportunity to talk to other patients and help them understand what they're going through as I’ve been through it myself. Quite often you’ll get a question asked by a patient or by a relative who has a loved one going through transplant and is worried, so me or one of the other patients who share on there can give an answer including our own personal experience of it. That direct insight is a comfort and helps them to know they are not the only person who is experiencing that. I think that is one of the powers of the forum. It helps people understand they are not alone. The strange things that they are feeling happen to others and have happened to others who’ve lived through it and come out the other side.
Is it difficult sharing your personal experiences to benefit others?
Not on the forum, because we all have that shared experience. It’s been a long time since my transplant so I can look back on it now as a bad period in my life that I made it through. It doesn’t really shake me up to talk about it anymore.
Did you use forums when you were going through transplant yourself?
I didn’t because not many existed and the Anthony Nolan one certainly didn’t. I think it’s such a great thing, I wish I had it when I was going through my treatment. You’ve got the opportunity to speak to others who have lived through it and no one can understand it more than those who have so it’s an invaluable support provided by Anthony Nolan’s Patient Services. I try to keep people positive on there and help them through the difficult times.
You’ve recently won an Anthony Nolan Supporter Award for Patient Champion of the Year – how did that feel?
It made me feel really proud. I was thrilled and honoured to have been nominated in the first place, let alone to have won. I’m humbled to get this recognition as I just feel I’m doing what I can to help others, but I wish the forum had been around when I had my transplant as it's so useful talking to others about our experiences.
'I’ve been a Community Champion on the Patient & Families Forum for three or four years now. It gives me an opportunity to talk to other patients and help them understand what they're going through as I’ve been through it myself.'
This January it will be five years since your transplant – Do you have any plans to mark the occasion?
I’ve nothing special planned, although I do try and mark the occasion of my rebirth each year by bringing cakes into the office.
If you could talk your donor today – what would you say to them?
I think I’d find it very difficult. I think it would be very emotional for me to try and say thank you to my donor.
You see I don’t think thank you is a strong enough word. What they’ve done has saved my life and I don’t think you could ever thank anyone enough for that. I’d be lost for words probably!