When my cancer came back I didn’t know if I could go through it all again
Lucy
Just one month after getting the all-clear for Hodgkin lymphoma, Lucy’s cancer returned.
In November 2020, I felt a lump in my neck. It was nothing major and just felt like a swollen gland, but, as I work as a nurse in ENT, I asked one of the doctors to feel it. They said that it felt fine and asked if I had any other symptoms. I didn’t, so they just said to keep an eye on it.
A couple of weeks later the lump was more raised again. I had to wait a couple of weeks for a proper biopsy. I was tired but put that down to working a month of nights. I was also losing weight. It’s so easy to write off the symptoms as day-to-day life.
When I was finally diagnosed with Hodgkin lymphoma, I was worried because it had taken five months and I thought that I should have pushed harder for a diagnosis. But I’d felt fine in myself, and I didn’t think a cancer diagnosis could happen to me.
I started having ABVD chemo at Aberdeen Royal Infirmary in May 2021. After each cycle of chemo, the lump in my neck was soft and it felt like it was going down, but by the time I was starting the next cycle it was hard again.
My scan had showed it wasn’t working, so they escalated me to BEACOP-DAC. It was 9-5, three days a week. I was on many steroids and had a false sense of feeling fine. The steroids made my face balloon and added to that I was bald. I looked like a moon.
During treatment, I was asked if I wanted the support of Amanda, Teenage Cancer Trust Teenage and Young Adult Clinical Nurse Specialist. We hit it off immediately and I really liked her.
I had a PET scan and Amanda chased the results for me as I didn’t have an appointment with the consultant for another month. I got my results on 11th November and it showed that I had the all-clear.
Why does my body not want to co-operate at all?
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Relapse
The whole time I was going through treatment, I imagined being cancer-free and I’d feel like there would be fireworks going off, but I didn’t get that. It was nice telling people because they were excited for me, but I just felt like something wasn’t right.
I still had a couple of lumps in my neck which had been explained as scar tissue or a recent Covid jab, but my mind was in overdrive, and I was thinking: “Is it back? Am I OK?” I was getting really stressed out about it.
Because I wasn’t happy that I still had lumps in my neck, they brought forward my next PET scan. The results showed that there was still cancer there. Just over a month after I was given the all-clear I was re-diagnosed.
I thought: “I can’t do this again. How am I meant to go through it all once more?” But I had to get on with it.
After two more brutal rounds of chemo, they decided to put me on immunotherapy and then a stem cell transplant.
The immunotherapy involves Nivolumab, which is in clinical trial stage for Hodgkin’s. It has very good statistics and there aren’t many spaces on the trial, and so my consultant identified me as a possible candidate even before I finished the last round of chemo.
I have an hour of immunotherapy for an hour every other Thursday. I get a bit tired and need my bed earlier than usual, but it’s nice to have a break from the side effects and to feel a bit more human.
If the treatment works well, I’ll have another four rounds of immunotherapy. If not, I’ll have to have radiotherapy.
After that, I’ll have a stem cell transplant using my own cells. I’ve already had my cells harvested so they are ready when I am.
Ryan, my family and friends have been so amazing and so supportive through all of this. They have made everything so much easier, and I will be forever in debt to them for everything they have done to help me through this very challenging time in my life
When I started treatment, I was very upbeat. I had my positive nurse head on. But on some days when my treatment isn’t working, I still think: “Why does my body not want to co-operate at all?”
There’s no end date in sight at the moment. It’s just a case of waiting to see how things go. But I’m moving in with my boyfriend Ryan soon so that gives me something nice to look forward to.
I wanted to do some fundraising as without Teenage Cancer Trust my experience would have been very different. My friend did a Marathon Swim. We also did a Soup and Sweet day which is where there’s loads of pots of soup and loads of puddings and people donate to come along. Local companies donated prizes for games, and we raised £8,700 in total.
Ryan, my family and friends have been so amazing and so supportive through all of this. They have made everything so much easier, and I will be forever in debt to them for everything they have done to help me through this very challenging time in my life.
