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Rayhan's story - My first year after a cord transplant

Rayhan was diagnosed with Hodgkin’s Lymphoma (Stage 3A) in March 2014 at the age of 26. A year ago this month he had a cord transplant.

Rayhan spoke with Billie in Patient Services about what his recovery has been like and what he has achieved.

 

 

Can you tell me what was it like being discharged from hospital for the first time after your cord transplant?

 I had mixed feelings. Because when I was in hospital, I was in safe hands, 24/7. And when you get discharged, you have that feeling in the back of your mind…‘What if I get home and something happens?’

Luckily I don’t live too far from the hospital and this was my second transplant, because I had an autograft transplant before.

Although an autograft is quite different from allogenic – so there was the fear of the unknown.

I had a bit of a lost feeling a few weeks after I came back home: what should I do? Do I eat that? Can I go out?

I was working from home from quite early on in my recovery and I was unsure how much pressure to take on, or what should I say to my boss about how I am.

 

Did you lose weight and struggle with your appetite when you got home?

Yes, I lost lots of weight. Food was completely tasteless for at least the first month and a half after I came home.

 

Was there anything that you found that helped?

I think spicy foods helped. In a tasteless world, nicely-prepared Indian food helped to give me some taste back. But I had to be careful not to have it too hot or it would upset my stomach!

Can you tell me about any GvhD you have and how you managed it last year?

My main symptom was GvHD of the skin. I had rashes and mole-type marks coming up on my body. So I was back and forth from the dermatologist.

 

What about infections?

In April I got really severe shingles and that was painful, very painful. They took me off medication, as I was 8 months out and doing well, but that was when it hit me – which I understand is quite common in transplant patients. I was admitted to my local hospital for a few nights.

How do you manage your fatigue and can you describe how it effects your day-to-day life?

It has definitely improved from the first month out of hospital. Back then I didn’t do too much, because if I did my head would spin. Sometimes when I commute to work, now I feel it.

After the first month I started doing little walks with my other half. She’s always with me. It was late autumn – so it wasn’t sunny, which helped, but again you feel extra cold as a transplant patient compared to other people! So I had to wrap up.

In the last few months I’ve actually started doing workouts. I lost so much muscle through my illness I’d like to build that up again.

 

You mentioned that you’ve gone back to work. How soon after your cord transplant did that happen?

I think I am in a privileged position because I’m an accountant, so it’s not physical work, it’s mental work, and I can do some of the things from home.

I was working from home after the first month, because it helped motivate me to move forward and to get better. A big internal struggle I had throughout my illness was not feeling useful. That was the most challenging part for me.

The stuff I was doing in the first few months wasn’t tough or complex, but it was something – and a step in the direction I wanted to go.

After about 5 months, I started commuting to work again. It’s a long commute, and as long as I travelled off-peak when it wasn’t too busy, it worked. It was good to go in and see some clients, and have some face-to-face contact outside of my home and the hospital!

 

How did your family and friends respond to your cord transplant?

In my case, there weren’t many family members involved, to be honest. Me, my missus, my employers and a few family friends know about it.

That was my choice right from the beginning, so there wasn’t too much explaining to do.

Most people I’ve told do understand as much as they can, without knowing all the terminology. My boss sometimes didn’t understand everything, but that’s the same for anyone who hasn’t lived through it!

I must say all through the last three years of me being sick, he’s been great. Very supportive.

 

 

 

How do you think your wife has been affected by the experience?

She’s had the biggest blow. I think she found it hard, the strain and difficulty of watching me go through the treatment. We are very tight and she hated seeing me in pain; she still does, but she copes really well.

Luckily it didn’t take her to that place where she is beyond recovery, or depression. She broke down every time there was bad news, but she kept pulling herself up and carrying on.

She continued working, visiting the hospital to see me loads, and when I was back home she took time off work to take care of me.

She did really well, I’m proud of her.

 

Did you or your wife receive adequate psychological support?

In terms of formal counselling, after my autograft I was very depressed.  So I sought help and went to see a professional at the Royal Marsden for a few months.

My wife never did; I think because of the time pressure, she couldn’t manage the time away for herself.

After my cord transplant, I haven’t felt I’ve needed the same kind of support. I’ve felt more mentally resilient.

 

 

What achievements – big or small – did you make that helped you realise you were getting there with your recovery?

When I was going through this, I set myself goals. I accepted that I was going to be sick for a period of time, but I wanted to use that time for something.

I actually sat for my certified chartered accountancy exams this past year, so while I was recovering I was also studying really hard! These exams are really tough. But I did it, and I got my membership, and I am now setting up my own consultancy.

 

That’s amazing!

I could have done these exams long ago but there was never time. So I thought, ‘In this time when I am not very able physically, I am going to put my mind to work and achieve something.’

It kept me busy and moving forward.

 

Do you have any plans to celebrate your first transplant birthday this month?

Not yet. Fingers crossed everything goes well, but we are going through our first mortgage and hoping to move into a new place, so we are concentrating on that for now.

It’s my wife’s birthday in October, so we will combine and celebrate then.

 

 

How does it feel to be a year post-transplant?

Good! To be honest, I thought this year was going to be physically more challenging. But I had great care from my wife, and I was very careful about meeting people and avoiding infection. Shingles is really painful, and there are things I can’t do that I used to enjoy, like gardening. But it’s gone well overall.

Mentally it was, and still is, a challenge. Because every day I have to pull myself up.

 

Do you have any thoughts or words for someone else who might be having a stem cell or cord transplant?

I think positivity is the main power.

You have to be focused, as well. If you are a really social person or you have a big family, there will be loads of people coming in with lots of different ideas, thoughts and feelings floating around the room. It’s important to have your own plan.

I saw it as a project. The doctor told me what was going to happen, and it wasn’t that I wasn’t prepared for the worst, but I decided to do my best. If you have a focused mind, the pain and other things you endure are easier to manage.

That’s what worked for me, and I hope that might be helpful for someone else too!

 

For more information about having a cord transplant, read our Anthony Nolan factsheet.

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