Reaching the end of your first year post-transplant is a significant milestone for blood cancer patients.
Billie in the Anthony Nolan Patient Services team spoke to Joanna, who had her transplant in 2016 to treat acute myeloid leukaemia (AML).
Joanna told us what her recovery was really like, and shared tips for other patients going through that difficult first year. She also talked about the huge effect a transplant has on those closest to you, and how her family have grown closer in coping together.
What was it like being discharged from hospital for the first time after your transplant?
I was desperate to get out, but I probably wasn’t well enough to go home. I think the medical team did a bit of a toss-up between my emotional wellbeing and my physical wellbeing. I was probably allowed home that bit earlier as my husband and I have a medical background.
Once home, I couldn’t really get off the sofa or out of bed, and I felt so unwell. The high doses of cyclosporine (because of my toxoplasmosis) and the medication I was taking for that made me shake, and I was persistently sick.
Did you lose weight and struggle with your appetite when you got home?
Yes, and yes. I couldn’t keep much down and lost about a stone when I first got home. I always tried to eat, though – even when I was vomiting so much. That way, at least some nutrients would get in!
Different things worked at different times. I found ice lollies quite good, particularly Waitrose pina colada ones!
It turned out I couldn’t bear all the things I normally loved. It took me a good 9 months before I could go back to drinking coffee or have chocolate.
I would recommend trying to eat at regular times. I got into the habit of lining my stomach ready for the side effects of the medication.
I would have milk before I went to bed, too, which helped with the nightly dose of tablets. I would also sit upright in bed for the first 30 minutes, to just make sure I didn’t regurgitate the medication.
Can you tell me about any GVHD you have, and how you’ve managed it this past year?
I’ve been relatively lucky on this count. I’ve got it in my flexures.
As soon as I get in the sun, I see the impact – not in full sun, obviously, but I sat outside for lunch today and I have red marks and itchiness in the creases of my elbow and in between my breast. I’ve also had it in my belly button and groin.
I get it on my face and scalp when I get out of the shower, but when my body temperature comes down, it fades. I haven’t found that anything takes it away, to be honest. I’ve also found that my skin was excessively dry everywhere, and use double base for that (not diprobase as that was too greasy) and I get that on prescription.
How did you manage your fatigue? Can you describe how it affected your day-to-day life?
I don’t think I can say how it affected me without talking about how it affected my whole family. Or my friends and extended family, really, for that matter.
You come out of hospital – and people expect you to be well. And it’s very hard because you’re not, you’re really not. And it’s not like post-chemo when you bounce back after a couple of weeks. It is a very slow, chronic process where you actually probably feel the worst you’ve felt the whole time since diagnosis.
Even walking out to the end of the garden and back causes an unimaginable fatigue. And there’s frustration too, particularly having children around, as they think Mummy is home, she can do stuff now. And guess what? You can’t!
If you manage to achieve unloading the washing machine – and I know that sounds ridiculous –
No it doesn’t, I promise.
– that is quite an achievement, and it’s all you’ll achieve that day. You also sleep a disproportionate amount of time in the beginning. Partly because you don’t feel sick when you are unconscious, but also because you have zero energy.
Sometimes you are just grateful that the day is finished, and you are another day closer to being off those anti-rejection drugs and on the road to recovery. It is amazing how much better you feel once you are!
Six months after my transplant, we went to Cornwall on holiday, and I couldn’t walk at more than a snail’s pace even then, and for some considerable time afterwards.
When you get home, you really need a full-time carer – to manage your own expectations as much as anything, but also because I couldn’t cook for myself or care for myself. Perhaps some people could. I don’t know how people without families cope.
Two very close friends did two amazing things for me. One was that they wrote a blog on my behalf, so I didn’t feel like I was neglecting my friends and was still keeping in touch with updates, even when I had no energy to talk or even hold a phone.
The other thing they did was a visitation rota. It meant that every day there was someone coming in, either during the morning or afternoon. And I could cancel any time if I wasn’t up to a visit, or needed time to myself, but there was someone there who I could call upon to say, ‘I’m feeling absolutely dreadful; I need your help. Could you do some shopping or collect the kids? Or can you just sit there and keep me company, as I am feeling a bit fed up?’
How do you think your family and friends perceived the transplant? Did they understand that it was the start of a long recovery process?
None of them understood that – I don’t think I did properly, either. People do see it as a cure-all. Even my husband, who is a surgeon!
I think my lowest emotional time was after the transplant. I questioned why I’d gone through it numerous times with my close friends and my family, and I think they did too. I just couldn’t see an end in those first 3-4 months. I looked at my life and thought, ‘If this is it, it’s not one I want to live. Why didn’t I just go out with a bang and not go through all this?’
But thank God I did, as it did improve. I must admit, though, if I hadn’t had children I don’t think I would have done.
How has your transplant recovery affected your relationships and your role in your household?
I think I’ve got back into my old role now, but as soon as I get ill in some way I can’t keep it up, and it makes me feel cross and frustrated.
My recovery has really affected those closest to me. My daughter was 13 when I was first diagnosed. She’s 15 now, and that caring role of mother to child had to be reversed, and that’s quite hard to accept. (Joanna pauses here – it’s quite an emotional moment for her.)
My son was boarding and so he had bit of distance from my recovery. He’s good with his emotions, always has been; he tends to let it all out with his friends. But my daughter was living with us, and she told me she felt she had to take care of Daddy too.
You mention your partner. How do you think he’s found the experience?
Overwhelming. I think initially it was very hard for him, as he’s from a medical background and he’s meant to make things better. In fact we had a row in hospital where I had to say, ‘You have to take a step back from trying to fix this. You aren’t in control here.’
It was really tough for him. I sometimes think it’s harder for the people watching than for the person going through it.
And you can’t touch them – especially my husband, who works in an environment with exposure to lots of bugs. I’m not talking about sex, I just mean hugging and affection.
Although sex isn’t easy afterwards, either, and that needs to be talked about more as you are shoved through the menopause due to treatment.
We are incredibly close, but my husband definitely still lives with a lot of worry that the transplant might not be a cure all. The look of fear on his face when I was in hospital, most recently with septicaemia, was awful.
The expectation of care for your partner when you go home after a transplant is a huge strain – at least in hospital it’s a third party. He dropped his work down to part-time, so there are financial changes too. He’s been amazingly supportive.
I genuinely wouldn’t still be here without him and my family and close friends. I wouldn’t have wanted to fight.
Do you think you were prepared for the psychological impact of transplant? Did you receive adequate support?
Not really. You are given written information about where to look for support, but it comes at a time when all you are thinking about is, ‘Am I going to die?’ In hospital I was given access to a psychologist, but it wasn’t helpful for me at that time, because I had no energy to engage with it.
When I got home and we were all trying to get on with life, that is when we needed psychological support. Especially when you, as the patient, start to feel a bit better, when you can actually think. That’s when I would have liked it for me and my family.
The haematology nurses are incredible but you can’t lean on them for everything; they mainly deal with the physical. The timing of support and information is crucial.
It sounds like you’ve been readmitted to hospital in your first year – can you talk to me about that?
I was pretty fortunate; I got a few bugs but managed to fight them off at home. It wasn’t until a couple of weeks ago, a year on from my transplant, that I got septicaemia and pneumonia, and was in hospital for five days.
What achievements, big or small, did you make that helped you realise you were getting there with your recovery in the first year?
I used to dread knowing that I needed a shower, because it was just exhausting. The mental strength to do it every day, in the beginning, was so hard to muster.
So I realised I’d reached an enormous milestone when that became something I just did every day again.
You get up, you have a shower, brush your teeth, have your breakfast, etc. Without even thinking about it, it went back to second nature.
Another thing that made me realise I was getting better was friends ringing me with their worries. They’ve always leant on me, and for ages people obviously felt they couldn’t.
Suddenly they’d share their own news, and then apologise for doing it, and I’d be able to say, ‘You’ve no idea how special it is that you are doing that!’ It becomes very boring talking about yourself all the time.
Do you have any plans to return to work? If so how, do you feel about that?
Unfortunately being in a caring profession is quite limiting, as the exposure to infection is unusually high. So I can’t do that for five years.
It’s not the end of the world, but I just have to think about doing other things now. You can’t look back ,though, you have to look forward – because you are lucky that you can.
I volunteer for The Silver Line. I used to do befriending with the elderly anyway, so this is a way I can still do that, as it’s over the phone. I’m involved in running a couple of local charities, organising events.
I don’t have the same self-worth as when I was bringing a wage in. That’s only myself; my husband wouldn’t dream of thinking like that, ever. I’m lucky that he earns enough himself to sustain us very well. We are lucky like that.
So you celebrated your first year anniversary in hospital, sadly. Any plans to celebrate further?
I am packing today to go on holiday and I am so excited, I cannot tell you! This holiday is an extension of that celebration, a special holiday for the whole family.
My son cycled coast-to-coast in February and raised £2,500 for Anthony Nolan, which was his way of celebrating my first year!
Looking back on your post-transplant experience, does the reality reflect what you were told in the hospital?
I think the hospital have to prepare you for the worst, so in many ways it’s been better, as I am alive and a good proportion of people aren’t.
The immediate post-transplant recovery was worse than I imagined. Physically I’m up to speed now, though; from four months onwards, things started to improve massively.
Emotionally I’ve had to dig deeper than I ever anticipated; I’ve done a lot of crying. The whole family have been affected by it. Each of my family has a story, and theirs is no less poignant than my own.
Any final thoughts for other patients?
Even at my lowest point, I tried to find a positive thing to focus on each day. It didn’t have to be anything big, just one thing that was nice about that day. Even if the rest of it was horrendous!
It could be that someone was coming to see me that I was looking forward to catching up with, or that I managed to keep a piece of cheese down, or noticing that a daffodil had come up in the garden.
Something positive, because it is very easy to be dragged down and to feel low. You have to try your hardest to stay afloat to get through it.