Nigel previously shared his story with us when he was preparing to have his bone marrow transplant in June 2016. Three years on, Caroline from the Patient Services team caught up with Nigel to find out how life is now and discuss his decision to retire following his transplant.
The last time we spoke to you Nigel, you were preparing for your transplant. Can you tell me a bit about transplant day itself?
I’d been in hospital for about two weeks beforehand. I’d had quite a compressed chemotherapy period so was feeling pretty rotten. Nonetheless, there was a degree of anticipation and excitement over what it was going to be like. My wife had travelled up from the west country and my brother-in-law came in on the day too.
You realise it’s so important to you – this process was my only option. You begin to realise that so much depends on this. It had taken a huge amount of effort to get me to that moment from the donor, doctors, nurses, Anthony Nolan, everyone. It’s extraordinary and makes you feel very humble.
How did you cope with the isolation period after your transplant?
I was in hospital for four weeks. I have some family members in London so I had visitors, but not every day. I coped with it by building as much of a routine as I could. I tried to get up and dressed every day because that helped to pass the time and made me feel more normal.
I’m not a great listener of music, so I listened to a lot of podcasts like Desert Island Discs. The trouble with films is you can lose concentration, but with podcasts you can pause and come back to them later. I also found FaceTime and Skype absolutely invaluable. I couldn’t read a lot as I couldn’t concentrate so would read magazines rather than books.
Once I was discharged, home was strange because my wife had to go back to work (although she was able to change her working pattern). I didn’t have nurses checking on me or people sorting food out for me or popping in. I found this quite scary actually, probably because I knew that I was vulnerable. I found myself watching quite a bit of a daytime TV (which wasn’t brilliant!). I’d expected to be on my own in hospital, but actually it was much worse after discharge.
It’s now approaching three years since your transplant. How has your recovery been?
If we fast-track to now, my recovery is amazing. I feel really well. I’m reasonably active. I’ve been able to travel overseas and play a little bit of golf. I’m in a really good place.
The first few months were very difficult. It was summer, but I couldn’t control my temperature at all. I was wearing jumpers as I was very cold all the time. Because I’d had my transplant in London, my care pathway was headed jointly by my local hospital and King’s. I went back to King’s regularly and was also seen locally.
After a few months, things sorted themselves out and I saw a senior nurse and then a consultant. Communication could sometimes be an issue given the inevitable difficulty of two specialists trying to work together. I think it can be a problem for a lot of patients who have to travel a long way for their transplant also. I made repeat visits to Kings and, as my drugs regime was gradually reduced, I started to feel more normal within six months.
Can you tell me a bit about your job and what it involved?
It’s quite hard to describe! I was the Managing Director of an autonomous business unit within a bigger company – a Learning & Development business, where I’d worked for about 20 years.
I was involved in pretty much every aspect of the company’s work: new business, customer service, financial reporting. It was a full-on job with long hours. Though I was office-based, there was lots of driving, trains and planes to see customers, clients and staff across the country.
Going back to work is rarely easy for anyone recovering from the long-term impact of a transplant. What were your feelings around returning to work?
Once I’d had the transplant, it was my plan to get back to work in the role that I’d had before. That was partly because it was my ambition, but also because I thought that was what was expected of me. I’d never known anything else.
There was also a degree of fear about returning to work and the question of whether I would be able to do what I had previously done. I tried to go back on a part-time basis, phasing my return, but that became problematic. It was difficult to do any one part of the job in isolation. I really didn’t want to let other people down and was unsure how I would cope.
How was communication
with your employer while you were off?
It was good, particularly with my senior HR colleagues. My line manager would have communicated as much as I wanted him to, but he also didn’t want to badger me. He knew that if I needed to talk to him, I could do so. He kept an interest, but at a distance – which was exactly the right thing to do.
Did you feel your employer understood what you had been through and were supportive?
Yes, they were extremely supportive. People were great in every way. I know from other people’s stories how lucky I was in that regard.
You took the decision to retire early, which must have been very difficult. Can you tell me a bit more about this?
I had a meeting with my line manager and told him I was ready to come back to work on a phased basis. He just said: ‘why?’. And I replied ‘Because I ought to’. He said: ‘You don’t owe us anything’. It was at that moment that I realised he was right. The sense of relief was palpable. Deciding not to return to work meant that a great weight of expectation was lifted off my shoulders. It meant that I would retire early.
I didn’t make the decision there and then – I had talk to my wife first! It was going to have quite a big financial impact on us as a family as I hadn’t yet reached state retirement age. It was earlier than I had planned, but nonetheless I knew it was the right decision. We agreed that I would retire the day before my 60th birthday.
I considered other things I could do to earn money elsewhere, but I haven’t taken anything up yet. I’ve done some voluntary work and would love to do more.
I would say the transplant affected me emotionally more than physically. I think I would have been able to cope with going into the office but the emotional resilience of handling the pressure even three years on would be difficult. I don’t cope well with a crisis or my emotions. I don’t cope with the unexpected. Prior to my transplant, I would have thought I was quite a resilient person but not now.
What effect has retiring early had on other aspects of your life?
A very good impact really. I’ve got more time and we’ve been able to do some travelling around Europe. I wasn’t confident enough to go much beyond. Travel insurance is a bit of an issue. You’ve got to do the research and there’s a bit more planning required. My wife is also a thorough planner and researcher, so that helps!
Can you tell me about the long-term effects clinic you visit?
I think it was quite a step for me to move to the long-term effects clinic. The beauty of it is that I get a complete MOT – everything from your skin to your blood so you feel reassured when you leave.
You see either a doctor or a nurse specialist and you’re able to raise all sorts of concerns. They also sent me for various scans to check bone density, so you feel like there’s always someone keeping a very close eye on you.
That clinic is once a year but, every six months, I still attend the post-transplant clinic too.
Unfortunately, not everyone will be able to afford to not return to work after transplant. Do you have any advice for people who find themselves in this situation?
That’s difficult for me as I realise I’ve been pretty fortunate. I think what I would say is there are enormous benefits of not going back to what you were doing before. It’s about accepting that there may be something else you’re able to do and that there’s going to be a really significant change.
I know it can be an enormous financial burden and source of worry – but the fact that you can’t do what you previously did, well that’s ok. Certainly for me, it was a case of completely re-evaluating my ambitions. I’m actively on the lookout for any opportunities I could contribute to.
For someone with blood cancer, a stem cell or bone marrow transplant is just the start of the road to recovery. If you would like to find out more about returning to work after transplant and the support available, you can visit https://www.anthonynolan.org/patients-and-families/recovery-life/returning-work or contact the Patient Services team directly.