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5 years since my stem cell transplant – Nigel’s Story
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Nigel had a stem cell transplant in 2013 to treat acute myeloid leukemia ( AML). He spoke to Billie in patient services on his 5th transplant birthday about what his recovery has been like.
Can you tell me what happened when you first became unwell?
I’d had chronic lymphocytic leukaemia (CLL) for some time and that was fine really, nothing ever happened. I just had to have a blood test every three months. Then in July 2012, I was getting really tired at work, almost falling asleep at the computer. I went to see my GP who had my most recent blood test - he didn’t know what it meant, but could see that something had changed.
I was taken to Wrexham Hospital for tests and blood transfusions. When I was back at home, the doctor visited me and told me I had acute myeloid leukaemia (AML), and that I needed to go into hospital straight away to start treatment. It was a shock, you tend to think these happen to other people, but the next thing I knew I was in an ambulance going up the motorway.
Within a few days of being admitted to the Christies. I have three sisters, who were all tested, but none were a match. I know it might sound silly to some, but I didn’t worry that they wouldn’t find me a match. Once you get into the hospital and the system, you kind of put your faith in them.
The coordinator Angie told me that all the registers were looking, and I thought ‘there’s bound to be someone' There’s no point in being negative, ‘cause everything is a damn sight worse when you are.
Don’t get me wrong, it was such a relief when they told me there was a match for me! It was at a time when I felt so washed out and sick after the first course of chemo, so getting that news was a real boost at a difficult time.
It’s a bit daunting to begin with. When you live out in the country, as I do, it’s quite difficult to get used to the fact that you just look through a window, and all I could see was one tree and some garages. That’s it! Normally I’d be out on long walks with our dogs. So yeah, it was difficult being locked in a 10 by 10 room.
At the very beginning you think ‘God’, but you do realise it’s the safest way. It gives you the best chance of staying well, as being around other people means being potentially around infections.
You do feel a little stir crazy at times. I felt anxious when I thought about not being able to get out. I also spent a lot of time thinking about how everyone else was outside.
I actually missed my daughter’s graduation from her nursing degree.. That was probably the worst moment. When you realise you really want to do something and you can’t - it’s tough.
What helped you through that time?
I used to make sure I got up and got dressed every day, because if you lie in bed you just feel worse. They also had a little exercise bike, just to get your legs moving a bit. I also really looked forward to visits, and my wife came most days, as well as the kids and friends. So that was good.
Another thing that helped was talking to the staff. Everyone at Manchester is lovely - the cleaners, the people that make the beds – they’re all up for talking. I did my best to get on with the nurses and the doctors too. I used to be watching funny YouTube videos, and the nurse would come along and we’d start watching them together at 3 o’clock in the morning!
What was it like when you finally got to go home?
I wanted to get out of there obviously, but it all kind of hits home when you leave. The responsibility - you’ve got to be so careful and so clean. I’ve got grandchildren who might be around bugs at school, so I didn’t really want them to come over. Of course I wanted to see them, but it’s not so simple.
At home, you’ve lost your safety blanket. You can always press that button in the hospital when you need something, but there is no button at home! Having said that, I was back at the hospital every other day in the beginning, then it’s weekly, then two weekly etc, so you are always in touch. And the Christie is great - you can ring them anytime for help or to ask questions.
' When you live out in the country, as I do, it’s quite difficult to get used to the fact that you just look through a window, and all I could see was one tree and some garages. That’s it! Normally I’d be out on long walks with our dogs. So yeah, it was difficult being locked in a 10 by 10 room.'
What did you do to build up your physical strength again?
Walking the dogs saved me. The first time I did it, I only managed about 200 yards and had to come back. But it was the start! Having things to work towards helped. It might sound mundane, but I couldn’t wait to be able to go and cut the grass. You want to be useful and be as normal as you can be, so I kept these things in my mind.
Who were your support network at home?
My wife, of course. She was here when she could be, but she had to go back to work. my daughters were here, which was a comfort knowing they would check I was ok. One of them had just qualified as a nurse and was working at A&E, and then having to come back home to care for me, which was hard. In the beginning I could barely walk up the stairs.
'I can’t drive too far these days, or concentrate for long periods of time, but I am just happy to be here and I do try and make the most of every day.'
How do you think your transplant and treatment has affected your family?
It’s tough for them. For me and the doctors, it felt like life and death at times and your family have to watch that, but they also have to run a home, pay the electric bill and hold everything together. My wife hadn’t really ever driven on a motorway or put petrol in the car. When I was at the hospital she had to do that, as well as handle all the bills. I do think it’s more difficult for family to be on the side-lines.
What has been the emotional impact of your transplant, and has this changed as time has passed?
It’s been a huge trauma having cancer. I’m a lot more emotional for it. I’ll cry at silly stuff on the telly all the time. Paul O’ Grady’s ‘For the Love of Dogs’ never fails to set me off!
I did have counselling at Manchester. My consultant said the effects of transplant and recovery can be like PTSD. One day you are walking around fine, and then it’s hospitals and chemotherapy, pills and side effects. Of course it’s going to be a huge shock to your body and your mind. Emotionally you are raw for a long time.
When in your recovery did you access counselling?
I was three years post transplant. I went to my GP because I wasn’t coping and he said I needed some help. Everything started to get on top of me. You know you ‘should’ be feeling better, and glad and not down. But I couldn’t help it, it was overwhelming.
A lot of people don’t realise how serious transplant is at the end of the day, and that’s a bit disheartening as you know you could have died. If I’d gone through my GP, I’d have had to wait 18 months for counselling, but luckily at Manchester there is a whole psycho-oncology department.
I remember at my first counselling appointment I just cried for about half an hour. I felt really stupid, but she said it’s fine, it’s normal. What has happened to you and your body is immense. You also know how it’s effected people close to you too, so you feel responsible for that. That something that I thought about a lot.
My counsellor recommended a book to me called the ‘Cancer Survivorship Handbook’, and I’d really recommend that to anyone struggling. It helped me a great deal to understand and come to terms with my new reality.
Have you had any long term side effects that you still live with now?
Fatigue is the one that hasn’t gone away. I went back to work after my transplant three afternoons a week, and that’s all I can manage now. I work in a lab. I can’t do things like I used to but, I’m ok with that - it’s a new reality. I can’t drive too far these days, or concentrate for long periods of time, but I am just happy to be here and I do try and make the most of every day.
'I’m so grateful to have the chance of life and for all the amazing work Anthony Nolan does'
I know that you’ve had contact with your donor and actually met him face to face – what was that like? What did you say to him?
We’d been in touch, we did the letters through you guys and that, and when we met in person it was in the glamourous location of an Ikea carpark! He’s in his mid 30s and a lovely lad, his name is Ben and he’s a senior paramedic.
When we met, I took my grand kids, two of my daughters and my wife Sandra. We just sat and talked. It was nice. I thought I’d be quite emotional, but surprisingly I didn’t cry – I behaved myself!
The thing I most wanted to talk to him about was why he signed up to the register and went on to donate, and he said, ‘It just seemed like a nice thing to do’. He said it was easy, the injections made you feel a bit groggy and afterwards he was tired but other than it, all very simple.
We keep in contact still, I texted him this morning, on my transplant birthday!
Do you think you’ve learnt anything from your experiences?
That I’m a damn sight stronger than I knew. If you can get through this, you can do anything. And if I can do it, a normal bloke like me, anyone can.
Also, that life is for living. Anything you can do after you get better, go out and do it. Again, could sound daft, but when I was in hospital at Christmas preparing for my transplant, my daughter bought tickets for the whole family to go and see Bruce Springsteen later that year. And all of us did manage to go. I know it might sound small, but it was just a goal that got me through. Something to look forward to, something I wanted to do.
What advice or words would you like to share with other people about to have a stem cell transplant?
I would say, trust your medical team. They are the experts. And make sure you don’t feel bad about putting yourself first, because it is all about you. If people want you to do things and you’re not up to it, or see people and you don’t want to, don’t do it. I know that you love your family, as I do, but you have to focus on yourself.
'It’s been a huge trauma having cancer. I’m a lot more emotional for it. I’ll cry at silly stuff on the telly all the time. Paul O’ Grady’s ‘For the Love of Dogs’ never fails to set me off!
Today is your five year transplant anniversary – how does that feel?
Amazing! it feels like it has gone quick in some ways, but looking back to how I was and seeing how well I am now, it’s incredible.
I’m so grateful to have the chance of life and for all the amazing work Anthony Nolan does. That’s why my son in law Ben ran the Great North Run for you guys, to raise money so you can save more lives like mine. Because of Anthony Nolan, I was able to give my daughter away at her wedding. That was an emotional day, I can tell you!
How frequently will you visit clinic now?
In August it will go down to once a year, which will be strange. I enjoy going back, it’s nice to see the staff cause they all remember you and it’s a lovely atmosphere. A lot of people think I’m weird saying a cancer ward is fun, but it can be a times.
A bit of gallow’s humour helps. There can definitely be lighter moments if you are open to them. My medical team played a huge part in me being alive today, being able to be here, sitting chatting on the phone to you with my dogs around me celebrating my 5th birthday.