It’s hard not being able to see my friends when I’m in hospital
Bobby
When he was 13, Bobby was diagnosed with acute lymphoblastic leukaemia and underwent chemotherapy. In the third part of his series, he discusses starting new treatments, contracting Covid and missing out on schooling.
Since we last spoke, I started a new treatment which consists of two rounds of 28 days’ continuous infusions of a drug called Blinatumomab. This is an antibody therapy as chemotherapy was not strong enough alone to get my blood counts to where they needed to be. I would have it for four weeks, go home for a short time, and then go back in for four weeks.
It was really cool, like a little pump that I could carry round with me in a bag, so I had more freedom than I would have done if I was hooked up to a machine. I didn’t need to be in hospital for it, but we lived too far away to go home, so we stayed nearby.
I was able to go across to the Teenage Cancer Trust unit at the Royal Hospital for Children and Young People in Edinburgh. It was nice having that normality and I got to hang out with my YSC Conor and the young people there. Conor arranged for us to have nice food and put on activities on the ward. It kept me occupied and we had fun.
He also came over to my accommodation a few times and the teenagers came across to play hide and seek. It was a nice distraction. I also went to a shopping centre and out for a meal with the other teenagers. It was nice to have that normality outside of the hospital.
I went into hospital every two to three days for the nurses to check on me and change the bags of Blinatumomab over.
All of my hair grew back, and I had lots of energy, but it didn’t improve my blood counts enough to be in remission. What treatment I have next depends on the results of my bone marrow tests. I feel a bit in limbo until I have those. I may need to go down a different route and have Car-T Cell therapy, but we decided to try Blinatumomab first as we can’t go back to that afterwards. If I do need to have Car-T Cell therapy, the nearest place that does it is in Newcastle, so we’d have to go down and stay there for some time.
I was allergic to two different PEG* treatments. My throat closed up and I struggled to breathe, so my treatment had to be stopped.
On top of that, I caught Covid. Luckily the symptoms weren’t too bad – I had flu-like symptoms. I was still able to carry on with the rest of my treatment though, but they were more careful. I had to go into hospital the back way and I went directly into an isolation room. I couldn’t see Conor during this time, but he still called me. It’s great that he was still checking in on me and asking how I was.
Ninewells Hospital doesn’t have anyone in place helping young people with their schooling at the minute, so I’m missing out on that. My mum spoke to my guidance teacher at school, and they are arranging for someone to come out to the house so that I can catch up. School have given me some work and I have some work online, but because I am in hospital nearly every second day, I don’t have the time and energy to do it.
The treatment is quite exhausting, but the school aren’t putting pressure on me to do it at the moment until I feel able to. I need to pick subjects for next year, but I’m concerned that I’ve not done the subjects enough to know if I like them and want to pick them. I also want to know if I’m limited to what I can do. I’d like to do PE, but I don’t know if I will be allowed to because of my health.
Once I get into maintenance treatment, I will be able to get back to school hopefully and I’m hoping to be able to have some taster learning sessions and I’ll be able to catch up a bit. I’ll also be able to settle back into school. It’s hard not being able to see friends while I’m off school and in hospital so much. My close friends keep in touch, and they talk to me a lot and check on me. I go on the PlayStation with them and would like to see them more once I’m able to.
* PEG: A type of chemotherapy for people with acute lymphoblastic leukaemia