Diana was 27 years old when she had a stem cell transplant. During her treatment, she also had a young baby to care for as a single parent. She spoke to Billie in the Anthony Nolan Patient Team about her experiences during and after transplant.
Can you tell me when you had your stem cell transplant and what your diagnosis was?
I had my transplant in February 2016, after I was diagnosed with acute lymphoblastic leukaemia.
When you were diagnosed, was a stem cell transplant discussed as a potential treatment option?
I believe so. I can’t remember much about that time, because it was a shock to find out I’d been diagnosed with cancer. But I don’t think it was too long after my treatment started; we were told I needed a transplant and there was no other way around it.
You had a sibling donor. What was it like waiting to see if your siblings were possible matches?
It was the longest two days of our lives! When it came back that both my sister and my brother were 10/10 matches I was so grateful and relieved. The doctors came to talk to us and let us know they’d prefer a male donor, so my brother was chosen.
Can you tell me how old your son Freddie was when you had your stem cell transplant?
I was diagnosed with cancer when he was 3 months old, and he was about 8 months old when I had my transplant.
That must have been very difficult to be apart from him at that crucial time, especially when you were in isolation – how did you cope?
That was one of the most challenging things, because my family had to go back to work at some point. They all have jobs to go to, and I’d been ill for a long time already. My family took a lot of time out in the beginning to support me and Freddie when I was an in-patient. I couldn’t have him in hospital.
By the time the stem cell transplant came around, they couldn’t take any more time off. I asked a friend who was not working to come and step in and stay with Freddie at my house to take care of him. When they were not working, family would go see him and bring him to the hospital every day, but my friend raised him during that time.
He didn’t have a normal childhood, unfortunately; he was back and forth a lot.
How was it for you in isolation, being away from Freddie?
It was difficult! At the end of each day, I had to say goodbye to my baby. I had to stop breastfeeding him immediately, because of my medication, and I’d made the decision previously to breastfeed for at least a year.
It was a big culture shock for us both, I think, because I didn’t raise him from when he was about three months old to a year plus.
After the transplant, even when I came home, I was really poorly and had to be back up at the Marsden 4 or 5 times a week. It was, ‘Hi, Freddie, bye, Freddie’ so much of the time.
How was it coming home from hospital for the first time after your stem cell transplant?
It was so challenging. I didn’t want to look at myself in the mirror. I’d changed, I was a completely different person. I’d lost so much weight and I had zero energy. All I could do was just lie down.
Did you struggle with your appetite?
So much. I didn’t want food, even though that was the only thing that would build up my energy. I was on meal-replacement shakes. Coming back home was one of the toughest bits.
Can you talk to me about the psychological effect of your treatment and transplant?
Unfortunately during the transplant, I had memory loss when I developed an infection on my Hickman line. According to my family, I was in so much pain I used to ask the doctors to numb my body so I could escape the pain a little bit.
I don’t remember this, so in a way the memory loss helped, but when I do remember bits it’s so painful to go through it again in my mind.
So you found that there was a psychological impact long after you left hospital?
I am still feeling the psychological impact to this day. I’ve changed. There’s things that I used to love doing that I don’t any more. Even getting up and getting ready sometimes seems like such a bother, and I think, ‘Why should I do it?’ But I remind myself that all those horrible experiences are in the past and I have to face the future and better times.
Did you see a counsellor or psychotherapist to help you with these challenging emotions?
I had to, as unfortunately I suffered two severe psychological episodes. The first was in hospital – I suffered a drug-induced psychosis, that’s when I was taking steroids. Then not long after transplant, coming back home, and taking care of Freddie everything just got overwhelming and I decided to take a holiday to Scotland. When I was there I was diagnosed with a psychological breakdown.
If you are OK to talk about it more, how did it manifest itself?
I started feeling anxious and nervous about everything. I couldn’t sleep. I think, looking back, that stepping outside the comfort zone of my house and its closeness to the hospital, so soon after transplant, left me vulnerable. Any changes startled me and I had suicidal thoughts.
I’d done the trip before by myself when I was well and I was fine, but this time I couldn’t relate to the trip and become unwell very quickly. I was transferred to a psych ward soon after we arrived in Scotland.
My sister travelled to get me, brought me home to England, and I spent two weeks on a psych ward at St Peter’s Hospital getting better. That was another challenging time with a baby. My cousin stepped in but I decided to enroll Freddie at a nursery when I was out, as it was too much for me to care for him at home 7 days a week.
He started going to that nursery 3 days a week, to give me some time to rest.
How have you managed your fatigue? Can you describe how it affects you in your day-to-day life?
Fatigue is one of those things they tell you will go away slowly, but you just don’t realise how slow it will be. Initially after transplant, I was constantly tired and I used to sleep day in and day out.
When I had to start taking care of Freddie again without my friends’ help, I really felt it. My mum and my sister would come to the house after work to help me with house chores – because it just took to much out of me to take care of Freddie, myself, and a home when I was recovering from the transplant.
Your family sound like they have been amazing. How do you think your stem cell transplant has affected them?
I think me getting sick with cancer took everything out of them, but there was no real time for them to come to terms with it. All of a sudden it was, ‘Diana’s unwell, the baby is only 3 months old’ – it was all go, go, go. They never got a break, and they are only just starting to get their lives back.
It is difficult to watch them give up so much for me, but I am forever grateful for all that they did for me and Freddie.
Now I try my best to do everything I can myself. And if I can’t, I try to source an outside agency so that my family aren’t being disrupted in order for me to have a normal life.
What has the financial impact of transplant been on your family?
I was lucky, in that I got lots of benefits from the government which kept me afloat. For my family, the biggest financial burden was all the travel costs and parking. They don’t live that close by, and it was expensive for them to come every day to see me. My brother would finish work, pick up Freddie, then take him to the hospital and then come home again afterwards. My sister would commute to see me by train and my mum would drive down after work.
You’ve recently returned to work. Can you tell me what you do and how you are finding the adjustment?
I’ve only been back at work for 3 weeks; I am a care assistant with the elderly. It’s tough. I did this job before and it was easy for me, but right now it’s one of the hardest things I’ve ever had to do. I am so tired.
I am looking for something easier, but being a single parent it is very hard to find jobs that I can fit in around caring for Freddie; it feels next to impossible. I am going to try and keep working, but it’s a struggle.
I would love to be able to keep a job, though. I did find something else, but it would mean a longer drive, so I wouldn’t be back in time to get Freddie and I can’t ask my family for more help.
This summer you are taking part in the British Transplant Games for Anthony Nolan – how is training going?
Training has been going great until this week, when I injured my knee! I’ve been told to rest for a week then I will be back to it. I’ve been training with my sister Linet; I don’t think I’d be able to find the motivation to do it without her.
Having said that, my fatigue is much better on the days when we run. The exercise does help my tiredness, which might sound strange when I’m telling you how hard I’m finding it living with fatigue! But the runs give me a little boost.
What advice would you give others preparing for a stem cell transplant with a young family?
There is help out there. It might not be readily available to you with a quick Google search. But if you speak to agencies and the welfare officer at the hospital, they will let you know about organisations that can support the children when you are going through a difficult time.
It’s not easy, so you have to take help where you can get it and don’t be too proud to say, ‘It’s too much for me.’
You need space to recover. You’ve been through a lot.