In 2011, Sue had a bone marrow transplant to treat her acute myeloid leukaemia (AML). Billie from the Patient Experience team asked her about isolation, the impact on her family - and how the transplant changed her outlook on life.
Tell me about when you first started to feel unwell.
In 2010 I had a blood test that showed that my neutrophils were low - at that time I wasn’t really feeling unwell, as I’ve also got Hepatitis C and my doctor just thought it was that.
I tend to get no symptoms from it, so they were happy to monitor things. But for two years prior to that I’d been getting lots of skin infections, fungal infections, and my immune system was low.
In October we went on holiday to Mexico, and I was really feeling unwell. I had an infection on the back of my neck and I was feeling generally low and wiped out. So I had antibiotics when I was out there and saw my doctor again on my return. I had also been to India not that long before, and my doctor started to wonder if I had picked up some kind of tropical disease.
I then got a really bad chest infection that wouldn’t clear up, and further blood tests revealed that my red cell count was down too, so I was finally referred to a haematologist. I really think I should have been referred to a haematologist prior to that, but hindsight is a wonderful thing!
I had a bone marrow biopsy, as it was now suspected I had a malignant blood disorder, but it came back inconclusive and I had to wait a month for another. The consultant diagnosed me with myelodysplasia (MDS), and by this point I was feeling really ill, faint and weak.
When she told me about the MDS I was really freaked out. I read up about it on the internet and thought, ‘Oh, no, I’ve got this terrible illness.’
By this time my second biopsy was due, to confirm that it was MDS.
The day afterwards, I got a phone call at home from the haematologist, and she said, ‘Is there anyone in the house with you? You need to sit down, because I’m really sorry to tell you that you’ve got acute myeloid leukaemia.’
Were you alone?
No, I had my husband there. I was admitted to hospital during Christmas week, got my Hickman line put in on Christmas Eve, and started treatment right away.
When was a transplant discussed as a treatment option for you?
Well, I was 58 at the time and had a comorbidity of Hepatitis C. Combined with the fact that the AML had transformed from MDS, I was told I had a really poor prognosis and not even to think of a transplant. Statistically, I had an 8 percent chance of recovery.
To be honest, I didn’t know much about transplantation, although I had heard of it. When I was admitted to Hammersmith, the lady in the opposite bed was due to have a transplant. She was older than I was, and I thought, ‘They’re giving her a transplant; my situation must be really bad!’
I went online and did some research, and all I could find was really negative stuff. I’d start reading patient blogs, and basically their blogs would end suddenly, and their wives or someone would come on and say they’d died – it was horrendous!
I have an interest in complementary and alternative therapies, so I started to look into that at the same time. I was lucky enough to have a really strong support network of friends and family which helped, but there was no getting away from my illness.
I was absolutely devastated; I really thought I was going to be dead in a few months.
But I responded well to chemotherapy, and during the second round the specialist nurse came to see me and told me the consultant wanted to consider me for transplant. I was devastated!
I thought, ‘I’m in remission, I’ve got through this, I’m going to go off and do the alternative therapy I was interested in,’ but now I was going to have this procedure that I’d read such horrible things about.
The consultant left it up to me, and I discussed it with my husband, and after much soul-searching we decided to go ahead. The reality was that if I didn’t have the transplant there was a good chance that the AML would come back, and that decided it for me.
When were you told your transplant date and that a donor had been found?
I don’t have any siblings, and I have quite a rare tissue type; my great grandparents on one side were Russian Jews, and the other side were Irish with some American heritage, too. So not straightforward, and they struggled to find a match!
I was admitted for another round of chemo while they looked for a donor. By this point I was getting very fed up, and I booked to go to a clinic in the States where they did raw food and alternative therapies. I wanted to go there before my transplant.
And when they did find a match for you – how did that feel?
It felt amazing! I feel tearful just thinking about it now. Not having any brothers and sisters, and then knowing that there was someone in the world who had the same tissue type as me felt wonderful. That she was volunteering to help save my life, a stranger, was so special.
Tell me about when you went into hospital for the transplant.
I told my doctor that I was off to the States for a month, and he said he’d rather I did that for a month than jump out the window, as by that point I was pretty depressed! I’d had enough of waiting, so we arranged to have the work-up before I went.
When I returned, I was admitted to hospital. At that time I was feeling really well! I had a suntan, I’d been exercising, and eating all the right things.
When I came in, my transplant coordinator, who was lovely, said, ‘Oh no! You’re so well, and now we’re going to make you really sick again!’
And when day zero came around…
That was just so exciting. My husband was with me and all my nurses, I felt close with a lot of the staff by then, as I’d been in out of hospital so much. The sister who did the transplant said a prayer in Filipino. It was lovely.
How did you find the isolation period?
It sounds strange, but I quite enjoyed it. I’ve spent my life as a social worker in child and adolescent mental health, so my life has always been really busy and chaotic.
Suddenly I had all this time to myself. I meditated, enjoyed reading, and I was on the internet all the time. I decorated my room with fairy lights, photos, cards and little statues. The staff always said they liked coming into my room as it seemed so serene.
I mean it was horrible along side all of that! I couldn’t sleep, I was vomiting, I felt like I was having panic attacks at times but the actual solitude was quite nice. My husband would bring me my foods and juices and I limited my visits to just a few people.
Did you have any psychological support during the process?
I am a trained psychotherapist working in the NHS, and I foolishly thought there would be counselling, psychologists on-hand from diagnosis all the way through treatment…and there was nothing.
In the end I had to beg to see a Macmillan counsellor. A specialist nurse even said to me, ‘We usually wait until things get really bad before we refer patients to a counsellor.’ And I said, ‘How bad do they have to get? I’ve just been told I’m probably going to die!’
A friend of mine had breast cancer a couple of years ago, and I couldn’t believe the difference in support she received. Counselling, visits with a psychotherapist who she’s only just stopped seeing, massage, group support – everything you need.
I felt like I was being a real nuisance asking for mental support.
So tell me what it was like to go home. What were those first few months like?
I was extremely tired and my legs were swollen. Just walking up and down the stairs was such hard work. I couldn’t sleep, and the medication made me vomit because the tablets were huge and very difficult to get down. I had no appetite.
My consultant mentioned that I might have to go back into hospital, as most patients do, and that I shouldn’t see it as a set back – but I was very fortunate, as that wasn’t the case for me.
Steadily my weekly appointments at the clinic became less and less frequent, and I eventually I had my Hickman line out. Day by day, things got better.
I still get fatigue and a little bit of GvHD in the form of a skin rash, but I was very fortunate – I’ve been very fortunate all along.
How would you say your transplant experience has changed your outlook on life?
It’s made me a much more grateful person– extremely grateful to my donor and the NHS and to Anthony Nolan. People are just wonderful, I got great care, and there is so much altruism in the world.
There is still a chance the leukaemia could come back, but because of the transplant it’s very small. Without it, I would probably be on regular treatment and living with all the fear that I only have a short time to live. I am grateful as so much has happened since.
I remember jokily saying to both my sons, who were single at the time when I was sick, ‘Look, why don’t you go out and procreate? Because I don’t know how long I am going to live for!’ But what I didn’t know was that one of them had actually started seeing someone.
While in hospital, I dreamt that my son told me he was going to be a father and I was so happy.
He then rang me that week, and said, ‘Mum, I’ve got some news for you. You’re going to be a Grandma.’
It was really lovely, and important to have something to look forward to.
At first I was just looking forward to the baby’s birth. And then I thought, ‘Hang on, I’m going to extend this. I don’t just want to live until they are born. I want to see this baby graduate.’ And then I thought, ‘No. I want to see them get married – and who knows, maybe meet my great grandchildren.’
It was just wonderful to think of the milestones yet to come.
You’ve spoken about your immediate family there. Can you tell me how your transplant experience influenced your decision to find family you’d lost touch with?
My father went back to live in the States when I was a small baby. We’d exchanged a few cards over the years but he had married, had more children, and decided not to tell them about me.
His wife didn’t really want them to know, and wasn’t keen on us keeping in touch. She passed away about ten years ago.
While I was in hospital, both my mother and my father turned 80 and I remember thinking, ‘How much longer is he going to live? I’ve been given this second chance at life, I have to get in touch.’
So I contacted him, and asked about meeting up, and that was the start of the process. I went over there, and he told my sisters and brother about me, and we had this huge reunion. I’ve now been over there twice. We’re all friends on Facebook and chat regularly.
I was 60 and I met my father for the first time! And you know, if I hadn’t had the transplant and gone through that experience, I probably wouldn’t have done anything about it. He certainly wouldn’t have done anything, although he was really glad and apologetic.
My sisters both mentioned to me that they were so happy for him, because it was like a huge weight had lifted off him. They hadn’t known what it was, but they were so grateful because they’d noticed it was there.
It was good for my mother too, very healing, and for my sons and grandson, as they now know a bit more about their heritage.
Have you had any contact with your donor?
I have written to her and sent cards to thank her, and she did write to me once anonymously. I know that she’s a mum and lives in Austria. I really, really want to meet her!
I did ask to meet her through Anthony Nolan’s donor welfare department as it had been three years but your colleague Lesley told me that unfortunately in Austria it has to be five years!
It’s my fifth transplant anniversary this July, so that’s the first thing I will be doing, contacting Lesley and saying I want to meet her now!
If she’d like to, of course – I hope she would. I’ve so much to thank her for.
If you think you or a family member might need support with a stem cell or bone marrow transplant, 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.