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Getting back to life after a stem cell transplant – Alex’s Story

 

Alex had a stem cell transplant to treat his Chronic Myloid Leukaemia in 2016. He spoke to Billie in Patient Services about his recovery and how it has affected him and his family.

Can you tell me what happened when you first became unwell?

I found out I had leukaemia in January 2016, but looking back now I’d been unwell a lot longer – I just didn’t realise. When they told me, it was almost like a jigsaw puzzle finally coming together.

In hindsight, what things did you notice that were an indication of your illness?

 I used to run a lot. Six miles would be relatively comfortable for me and I remember trying to run once when I had to walk the final mile. And I just thought, ‘my goodness, what is wrong with me?’

When I was exercising, I noticed my body took me days to recover. In my head, I thought maybe I was losing my motivation, that I wasn’t enjoying running as much anymore. I worked nights, which are tiring, and we had a young baby who wasn’t a great sleeper – so I just put things down to that. I thought I was suffering from stress to be honest.

So you went to the doctors for a blood test – what happened after that?

I actually put it off a bit, cause it was Christmas time and I thought I know what the doctor will say! ‘You’ve been drinking more, stressed, eating lots etc.’ Which is what the doc pretty much said!

But that same night, we had a knock at the door at 11.30pm. My heart was pounding, because of my illness as well. We thought, this isn’t going to be anything good. I remember my hands were shaking trying to get the chain off.

There was a man standing in the door that said he was a doctor, we let him in and he told me my results showed I had leukaemia.

I knew it was very serious, but I didn’t know exactly what it was. I didn’t know it was a cancer. My wife Vic started crying and I knew it was bad. She told me not to look at the internet, but of course I had to.

And it weren’t good! I wished I hadn’t.

Dr Google can leave you with more questions than answers…

Yeah, and lots of the information is conflicting or wrong even.

We went the following morning to hospital, I came out after one week then it was back in until the transplant was done.

When was a stem cell transplant discussed as a potential treatment option for you?

It was talked about very early on. I have a twin brother and two sisters who are twins.

My brother wasn’t actually tested. Because he’s identical, they said they don’t like to use identical twins as donors, as his body and immune system could likely be too similar and so wouldn’t be the best match.

My sisters were tested though, but neither were a match. It was a huge relief after three months when the hospital told me they’d found two matches! One here in the UK, and one in Germany. They decided to go for the one here on the Anthony Nolan register.

Alex on transplant day

What was your transplant day like?

Exciting is definitely the wrong word to use! The whole time I was in hospital I was on a bit of a count down. I had the mentality that I had a job to do. I wanted to get in there, eat well, keep clean, exercise when I could. It might sound ridiculous.

It doesn’t sound ridiculous at all Alex, it sounds like you wanted to do everything in your power to keep well.

I was terrified about mouth ulcers. Or having to have a feeding tube. I was on the slim side when I went in already, so I was scared about wasting away. I was very strict with myself. Made myself eat whenever I could, and used the mouth wash they recommended five times a day.

I also always made myself get up and go to the toilet, even when I really didn’t want to. I didn’t want to use the bed pan because I thought at least it’s a bit of exercise. Even when I was exhausted.

'Like in the beginning, going to the hospital, I couldn’t even look at the room where I stayed. We took some chocolates back to the ward, but I couldn’t even go in there to say thank you. It were fear really.'

How did you find the isolation period? What was it like being away from your daughter, Lydia?

It was very hard. The only people I saw were my wife, my mum and dad, and my brother. I purposely said that I didn’t want Lydia to come. Of course I wanted to see her, but I knew as she was a little kid, there was the potential for picking up an infection and I just thought for the sake of three weeks or so, it wasn’t worth risking it.

I’ve got a dog as well. Again, this may sound ridiculous, but anyone who’s been through it knows how emotional it can make you. I couldn’t look at pictures of my daughter, or even hear stories about her when I was in isolation. Even me dog. When I saw pictures of the two of them it just made me cry. Vic would visit and tell me that Lydia had done something funny, made her laugh last night and she’d want to tell me and I couldn’t really listen to it. I’d have to ask her to stop.

It kind of distracted me from what I was trying to do, if that makes sense. I had to focus. It made me so upset that I felt weak, and I needed to be strong.

It’s not uncommon for patients to get into the mindset of having a job to do, as you’ve said, it helped you focus on getting out and getting well.

What was it like when you finally got to go home?

I was desperate to go home. I thought I’d find things easier as I’d be more relaxed. The hospital setting made me very anxious and stressed.

But seeing Lydia and my dog for the first time… of course I was in bits!

I actually found being at home and going back to ‘normal life’ quite daunting. I remember just walking down the street to my mum’s made me nervous. It was a bit of an ordeal to go anywhere. It were scary for a while.

'Of course I wanted to see her, but I knew as she was a little kid, there was the potential for picking up an infection and I just thought for the sake of three weeks or so, it wasn’t worth risking it.'

It sounds like it took a while to regain your confidence

Yeah, that’s exactly it. Everything I’d been through shattered me confidence. For a lot longer than I thought it would.

What did you do to build up your physical strength again?

I was like an old man walking round when I first got out of hospital. I’d lost so much weight. Walking the dog was a massive help. Having a reason to go out helped. Just very short distances at first. I built up from there really.

A bit further down the line, I tried to do some exercises in the living room at home. One thing that changed so much for me were parkruns. I did one of them, quite slow. But it was such good fun and such a welcoming atmosphere. People at the front are a bit more competitive, but at the back people were walking, pushing push chairs etc.

It was a breath of fresh for me, it gave me motivation. I was thinking, ‘I want to get along to next week’s and get that time down slightly’. I saw a lot of ill people doing it. So I really recommend it when your strength is back a bit, as they are all over the country.

'I certainly try and enjoy life more, which sounds so cliché but it is true. Even simple things.'

How did your wife care for you during your recovery at home?

In so many ways. I think what she went through was as hard as what I went through, if not harder, as she might have felt helpless watching on the side lines.

I don’t know anybody, even Mother Teresa! (laughing) that would have put in that much work to care for someone else. I’m forever grateful. In the hospital she would wash my sheets every two days, I had new set of PJs every day or two. She was always bringing me food.

And when I was home, she was taking care of the home and baby Lydia and cooking me whatever I felt like I could eat. She’d dart up the shops with Lydia in the pram and get me what I thought I could stomach. She always put herself last in the pecking order, eating something rubbish herself when she’d already made two teas.

It sounds like it made a big difference in your recovery.

Massive, all with a young baby. Partners almost get a bit forgotten at times, as all the focus is on you, the sick person.

The rest of my family helped too, of course, and Vic’s parents came to stay. But sometimes visits were hard.

How so?

It wasn’t that I wanted to be left alone as such, but sometimes I just didn’t have the energy for other people.

It was a chore to talk to people sometimes and I knew full well I wasn’t great company. I look back now and think, ‘how easy is it to reply to a text message?’, but it was tiring to even think about it. That’s how bad the fatigue was.

When did you go back to work, how long after your transplant?

That were something I was really proud of. I was back to work after seven months. And they were very good to me. They kinda put the brakes on me a little bit, offered me the opportunity to come back on days, just potter and find my feet a bit.

I’m an engineer. And it was important for my pride. You have an approval to sign aircrafts off and I wanted that back. As I hadn’t been in action for 6 months, I’d lost it and I wanted it back.

I wanted to be back in work and run my own shift again, as I felt it was something for me. I got back a bit too quick really. Looking back, I weren’t fully fit. But now I’m back to normal and I’ve actually changed jobs now – so I must be alright!

'I would try to relax more, not get so het up. Chill out about my eating. If I couldn’t eat one time, it doesn’t matter. Try again later. I’d have gone a bit easier on myself. I imposed a lot of pressure on myself that, looking back, I could have done without! '

What do you think the emotional impact of your experience has been?

I do fully understand people aren’t going to understand transplant and recovery unless it’s happened to them. Why would you? I know I wouldn’t if the shoe were on the other foot.

But even so, I find it frustrating. That people don’t understand what it were like. Which is stupid I know. I think it’s a big issue for me.

I suppose it makes me feel a bit alone. Cause of what me and Vic went through, I sometimes think that we are isolated from the other people as they don’t fully understand.

No one is doing it on purpose, of course but all the same, it’s how I feel.

Now I feel fit as a fiddle again, positive about my life and really lucky to have such a lovely family.

But I think about having cancer every day. And not just once a day. I think about it at night, at work, when I’m with my friends. My pills are a constant reminder of what I’ve been through. There are adverts about cancer everywhere.

That in itself, is draining. Because you’ve got to live with it now. The fear of relapse is very real. I hope it will get better with time.

People see the physical bits, but not what goes on inside your head.

It’s been one and a half years since your transplant. So it’s still early on, it sounds like you are processing everything well. I think it will get better with time. Although I know that’s not much comfort now.

 Have you thought about trying counselling again?

I’m not sure it’s right for me, although I’m sure others find it helpful. Day to day I’m able to manage, but these are just some of the thoughts I have. And I have noticed some things have already improved with time already.

Like in the beginning, going to the hospital, I couldn’t even look at the room where I stayed. We took some chocolates back to the ward, but I couldn’t even go in there to say thank you. It were fear really.

Now, I find going to hospital much easier and it might sound crazy, but we can both remember having nice memories of going there. It’s a comfort in a way. Things that have made us laugh there, the staff feel like friends almost. I go every two months now. ‘Look forward to’ is probably the wrong phrase, but there, I feel normal.

Perhaps it’s because they understand.

Yeah, that’s it, they get it don’t they. I went to an exercise rehab class for ten weeks and used to really enjoy it. I have fond memories of going there even though it were hard.

Do you have any tips or advice for someone going through transplant now?

Everybody is so different, but if I could go back and do it again (laughing) just to be clear, there is no way I want to do it again!

But I would try to relax more, not get so het up. Chill out about my eating. If I couldn’t eat one time, it doesn’t matter. Try again later. I’d have gone a bit easier on myself. I imposed a lot of pressure on myself that, looking back, I could have done without!

If I’d relaxed a bit more, it would of helped. Very easy to say now though isn’t it!

Have your experiences taught you anything?

How incredible your body is and how much it can withstand! I certainly try and enjoy life more, which sounds so cliché but it is true. Even simple things.

I remember a day in particular on me own walking the dog, just a normal field, nothing special about it and just thinking ‘wow I’m lucky, this is so nice’.

It’s quite sad that you would have never had that kind of appreciation if you hadn’t been through something similar.

I really do try to not bog myself down with stuff, or get upset about things. I still fall into old ways – have a whinge etc. But I try not to.

I know that you have written to your donor, how did that feel and what did you say?

Well, it feels a little strange obviously, because I’ve never met him. But it was great to have the opportunity to say thank you and tell him how grateful I am. To hear back from him was lovely and I hope he enjoys hearing from me.

I would like to meet him someday, if he would like that when we are allowed. The guy has saved my life with his generosity; it takes a certain kind of person to do something so selfless - the least I’d like to do is thank the man in person.

 

Read Alex's wife Victoria's story of supporting someone through a stem cell transplant.  

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