Nigel is about to be admitted to King’s for his bone marrow transplant in the next month. He spoke to Billie in the patient experience team about his journey to transplant.
Tell me about your diagnosis.
In early 2014, I had a routine blood test, because I had developed acute psoriasis; I was feeling generally washed-out, and suffering night sweats.
Within two weeks I was sat with my wife in the haematology department of our local hospital feeling pretty scared, as the initials ‘MDS’ were brought up in connection with my symptoms.
When was a bone marrow transplant discussed as an option of treatment for you?
Almost from the point of diagnosis, I knew that a transplant was the only cure – if that’s the right word – because of the nature of my illness, a transplant was only ever going to be the final solution.
How has communication been with your transplant team during the search process for a donor?
Communication has been good, but I’ve had to accept there are gaps in that communication, which can sometimes be difficult.
I live in the West Country and I’ll be having my transplant in London, so I’ve seen two sets of doctors; both local consultants and the transplant team. When I see my transplant team in London, it’s great. I really admire the communication in that team.
I am sometimes concerned when meeting a new doctor. Will they know about my circumstances? Will I have to explain everything again? But that’s not been the case.
But because you might only see them once every month or two, you just have to accept that there are times when you appear to be left to your own devices – and that can be a bit unsettling.
But they contacted you when a donor was found?
Two donor matches have been found for me. Both, I am told, are good matches in terms of tissue typing. I’ve had a phone call in the last week, however, telling me that the first donor isn’t going to be available for the scheduled date for my infusion, and therefore they are now making contact with the second donor.
I’ve not heard any more regarding that, which is a good example of the communication situation. I know things are happening, but they can’t tell me anything at the moment because there’s nothing to tell me.
That must be quite worrying for you!
It is, a bit. It might seem strange, and obviously I am worried that my transplant might be delayed, but what weighs on my mind more is the sheer logistics of everything that I want to organise ahead of the time.
Accommodation for the night before, booking train travel…and it’s bizarre, as those small things shouldn’t really matter in the scheme of what’s ahead, but they do all add to your anxiety.
Before your transplant, have you done any reading or information gathering to prepare yourself for the process?
At my last visit I was given two booklets, The Seven Steps and The Next Seven Steps which I know is produced by Anthony Nolan. I’ve read through them both in a lot of detail and I sort of prefer these kind of things to information on the internet, I feel safer with them.
What about your wife? Has she been involved in looking at the transplant process with you, and seeking out information about what’s to come?
Yes, she’s read the books too. I read them and didn’t really say anything, and she picked them up soon after.
She notices little things. Like she said, ‘Will you be on cyclosporine? Because see here – you can’t have grapefruit if you are’.
My wife is a great planner; she’s been thinking ahead. ‘What sort of toothbrush will you need to take in?’ She thinks of the things I haven’t considered, she’s really into the detail. I’ve not been in hospital as an inpatient for 35 years, so it is going to be a strange experience.
Have you thought about what you might like to have in hospital with you?
I’ve thought about things like audiobooks and podcasts to pass the time and occupy my mind.
How do you feel about the isolation period and how long you might be in hospital?
I’ve thought about it quite a lot, and that’s partly why I’ve been focused on trying to think about things that will pass the time. I’m not sure I’ll have the energy or the attention span for films, so I’ve picked shorter things like podcasts.
The first day or two will be OK, but I know I’ll find it difficult being on my own for such long periods of time. If there’s something to watch or listen to, that won’t be quite so bad.
Another challenge we have is being down in the West County; my wife will need to travel to see me, and I think she feels she needs to be with me as often as she can.
I know it will cause her a huge amount of stress travelling up, and I don’t want her to feel obliged to be with me all the time. It will be very difficult; she works for the NHS, in fact.
We have other friends and family, mostly in the West Country, who will visit. But I know there will be days when I have no visitors at all, and that’s OK; my wife’s support will actually be more needed when I get home.
Have you managed to look past the transplant to coming home?
The physical journey home is going to be difficult. The train journey is four hours door-to-door and that’s going to be mighty tough. We are looking to see if there is hotel nearby that’s got a car park; my son could maybe drive my wife up the night before, and my wife could drive us home.
But she’s not the most confident driver in London, especially with me being ill, so we do have some concerns. And then when we’re home, I read that 80% of patients are readmitted in the first month – so I know it’s not going to be easy.
You’ve mentioned the logistical challenges to having your treatment in London. Can you talk to me about why you chose to go there?
I was advised to get myself referred to a centre of excellence when I first had my diagnosis; my consultant was delighted to do so and mentioned both Oxford and King’s.
Now you see, my sister had her treatment at King’s for a similar condition. Despite the very best of care and specialist treatment, her condition became AML and she sadly died in 2011 at the age of 57.
My local consultant mentioned that King’s were keen to do some research into the familial links of the disease, and so it seemed like the obvious place to go. My condition is chromosomal and there is some evidence that it could a genetic problem.
It was also somewhere I was familiar with, from visiting my sister many times.
That must quite emotionally complex for you – juggling everything that you’re anticipating for yourself, alongside remembering your sister?
It is tricky. On one of my first visits to King’s, I met one of the nurses who was taking blood tests from me and she said, ‘I remember your sister’.
And that was quite something, as it was several years later – but she still remembered her. When I walked past the ward at my consultation I thought to myself, ‘I remember standing here four or five years ago as a visitor, and now it’s my turn.’
It certainly does add some complexity to all that’s going on.
That must be very hard for you. How is your relationship with your employer? Have you talked to them about the transplant process with them?
My employer has been great. They’ve just really said, ‘Take what time you need,’ and they’ve allowed me to cut my hours down to about 50% in recent months which has really helped.
Have you thought about how you might keep in contact with people while you are in hospital?
I’m going to set up an email group that my and wife will share. That way I can send updates about how I am doing, and she can tell people about her visits too.
Preparing for a bone marrow transplant can be a challenging time. If you think you or a family member might need support, you can visit the Anthony Nolan Transplant Community to talk with other people who've been through the same thing, or you can contact the Patient Experience team directly.