Louise's story
When a donor on the register couldn’t be found, Louise’s older sister stepped in. Recovery was tough, with weeks of acute GvHD, but her family and partner kept her going. Over the next year, she slowly got back to the things she loved, like swimming and art, even holding an exhibition last summer. She also started supporting Anthony Nolan to help others who need a stem cell transplant. In this blog, she shares her experience.
A shock diagnosis
I've always been very fit and active, so becoming ill was quite a shock to the system. The first few days after I was admitted were full on. I felt as if I'd been thrown off the back of an ocean liner into turbulent water. I was just paddling like mad to keep my head above water.
I'm an extremely practical person and I just went into efficiency mode. I made some decisions on day one. Number one was to not look anything up on the internet, but to trust the doctors to tell me what I needed to know. I told all my family and friends, "if you look anything up, don't tell me”. I also didn't want to hear anyone else’s cancer stories. My mantra was "one day at a time’. I got up and dressed every day in time for the doctor’s rounds, even when it was really tough.
Early on, I was allowed home for a few hours so I asked my hairdresser, who always came to the house, if he could come and shave my hair. I knew I was going to lose it anyway, and I just thought it was better to decide when it happened. I quite liked it!
The search for a donor
The doctor had said to me, ‘you'll have four rounds of chemo, and that should get rid of it’ but the bone marrow biopsy found that I had a mutation, and that meant it would just keep coming back. So, then he said, ‘you need a stem cell transplant’.
Another doctor said to me, ‘you’re white Caucasian, so finding a donor shouldn't be any problem at all’. And I said, ‘well, actually, I’m Ashkenazi Jewish’ and I saw this kind of flicker in her eye, as if to say, ‘oh, shit’. She said, ‘oh, fine, don't worry’. There actually was one person on the register who was a match for me, but when Anthony Nolan tried to contact him, he didn’t reply.
So, I decided to do an interview with the Jewish Chronicle and raise awareness. Also, because of the music world that I'm in, I know a lot of younger people, so I did a WhatsApp campaign and about 60 people joined the register.
Several weeks later, there was still no match for me. I was getting anxious. The prof said to me, ‘have you got any siblings?’ and I said, ‘well, I've got a brother, but he's had prostate cancer and I have a sister - she's 72, she lives in France, but she's pretty fit.’ My sister had already said she would donate if I needed her.
So, she came for the tests, and when they said she was a match, it was amazing. She was really excited about the prospect of doing it. So that was quite a bonding thing. When she came to donate her stem cells, I was in a neutropenic state, and I had sepsis, so when she came into the room, I barely even knew she was there. So that was a bit of a shame. It was such a big deal and it would have been nice to celebrate together.
Recovery
You're told what it’s going to be like, but you can't really compute it, until you experience it yourself. I had GvHD so badly I had to go back to hospital for nine weeks because of the symptoms. So, it was pretty grim. I remember thinking, ‘is the transplant working?’. It just felt like every minute was an hour. It was horrible, but my medical team were wonderful.
After nine weeks I said, ‘I want to go home’ and they let me out, but I had to have a live-in carer for two months. She was marvellous. I also had to go into the hospital every day for the first two weeks, to have some medication via IV. The tiredness was hard because I'm a very, very determined person.
My daughters were amazing. I mean, they did so many things for me. Before I got ill, our relationship had been tricky since their father died four years earlier, but the day I was diagnosed it was like a switch flicking. It suddenly changed completely. So, they kept me going. “I said to them, ‘you've lost your dad. You're not going to lose me. I'm going to see my grandchildren grow up’.
It was touch and go at times. I remember saying to the nurses on three or four occasions, "don't let me die". I really wasn’t ready to go.
Life now
I feel like a well person again. I don't have the cancer anymore and the transplant has worked 100%. I had to be careful with certain things for a very long time because I was having an IV treatment at the hospital, so I had a PICC line in, but when that stopped I could swim again. I'd always been a big swimmer, I used to swim a kilometre twice a week. I thought, well, the first time I go back, after three or four lengths I might have had it – and I swam for 24 lengths. I wasn't overly pushing myself and I thought, ‘oh gosh, I haven't forgotten how to do this’. I was really pleased. I also got back into my studio and I had an exhibition last June, which gave me a real focus.
I also started supporting Anthony Nolan. Until I needed a stem cell transplant, I'd never heard of the charity. Now I know how important their work is, I want to support them. I make donations myself, as a philanthropist, and then they made a proposal to our family foundation to fund a project, so we have supported that too.
I’ve learned a lot about myself. There are a few things that I think have fundamentally changed in me. One is that I never ever get angry about anything anymore and the other thing is that I just live much more in the moment. It's just good to be living my life again.