I’m back in the UK and the bone marrow transplant is happening.
My last post was about 2 months into chemo. Since then, it has continued to be a roller coaster. I ended up having 6 cycles of chemo and spent 5 months in hospital (so far). We made the flights that we originally booked and I’m now under the care of the transplant team at Sheffield Hallamshire hospital.
Chemo and Infections
Chemotherapy has been tough. Many of the side effects repeated with each cycle but I did get better at managing them. The protocol for my treatment required two different courses of treatment - A and B. This was repeated 3 times - hence the 6 cycles. A and B had different drugs and I’m still trying to make my mind up which was worse. I had a few bad reactions to some of them so they were tweaked as we went along. Each cycle followed a familiar pattern over 3 weeks - a few days of IV and oral chemo until I was neutropenic (no immune system), a few days of recovery, and then more days of chemo.
After a few weeks, being in hospital was driving me nuts. I could look out of the window and see our apartment across the road. The doctor could tell it was having an impact on my mental health so had to weigh up the risk of letting me out for a break against the risk of me staying in and turning into a mental wreck. The first two cycles of chemo were back to back. After that, they were happy for me to go home for a 1 week break between cycles. It was never enough. I would be at home in recovery but still having all the side effects - fatigue, nausea and vomiting, etc. I would get to day 6 of being at home and just starting to feel a little better when it was time to go back in again.
After the first couple of cycles they also gave me a pass to go home mid-cycle for the recovery days with a warning that if I started to get feverish I would need to come back in straight away because even a cold could kill me. They had seen it all before and they were absolutely right. I couldn’t believe it. I would go across the road to my apartment, not leave it, and nearly every time I would pick up an infection. After a few months this was devastating. I’d be desperate to get out of hospital (just to get some sleep, if nothing else), and sometimes within hours I would feel myself getting a fever. Rach would take my temperature and as soon as it got close to 38 degrees I’d be back in hospital again. I stupidly argued with her - trying to come up with any rationale why it’s not really a fever and we should wait a little longer. She rightly was having none of it. So I’d go back in and immediately get put on a course of antibiotics. This often then delayed my discharge at the end of the cycle.
Weight loss,Hair Loss, .etc
I’m no longer overweight. I’m back in 32 inch trousers for the first time in many years and even they were falling off me when I got discharged after the 6th cycle. I know some people on chemo put on weight (mainly due to the steroids), but in my case I was only on steroids for a few days at the beginning of each cycle. The weight loss has been due to a combination of loss of appetite, nausea and mucusitus (which happened every cycle).
After the 6 cycles of chemo I got put onto maintenance chemo for the trip back to the UK and while waiting for the bone marrow transplant. This is essentially one tablet a day of oral chemo (Dasatanib) alongside the other meds I need to protect my organs and deal with the side effects. The reduced dose has meant my hair has started to grow back, my appetite has returned and even my tastebuds are coming back. It will no doubt all go again with the high dose chemo required in preparation for the transplant.
For the first couple of cycles I was highly motivated to work with the physio and keep up exercise to try and stop muscle loss. However, as the chemo went on and on, the side effects persisted and the fatigue kicked my butt. I just got weaker and weaker. I only really noticed how weak I was becoming when I got to go home. Just walking across the road and going up a few steps became a struggle.
I was dead set against using a wheelchair but Rach convinced me to use one for Lauren’s graduation. I’m glad I listened to her. I realised how bad things had become when I got out of the wheelchair to get into the shuttle bus to go over to the other side of the campus. It was only a couple of steps up but my legs completely collapsed from underneath me. I couldn’t get up. It was ridiculous.
That was on the 8th December. Flights to the UK were booked for the 18th December and there was no time left to recover enough fitness to have a trip home without help. We booked wheelchair assistance at the airports (and did I learn a few things about airport security!). I’ll talk more about the trip back in another post.
After 5 years of university, our daughter Lauren graduated from the University of Queensland with a Bachelor of Speech Pathology with honours degree. She originally did a year of Psychology at the Queensland University of Technology (QUT) before deciding to change direction to speech pathology. Hence the 5 years. It was the proudest day of my life. I was a physical and emotional wreck. Right up until the day itself I didn’t know if I would make the graduation. I never know from one day to the next how my health will be. The whole reason we stayed in Australia and I had 6 cycles of chemo (instead of the planned 4) was so that I wouldn’t miss her graduation. I’m so grateful to my doctor that he made everything work so I wouldn’t miss it.
Lauren is now a qualified speech pathologist and is waiting for her registration to transfer to the UK so she can take up a role as a speech therapist. It’s going to take a few months. She has put her original plans for backpacking around Europe on hold for a while, pending what happens with my transplant.
On the 2nd January, I had my consultation in Sheffield with Dr Morley who heads the transplant team.
I still have PTSD from that conversation. I had been given lots of information about the transplant while I was in Australia but I largely ignored it. My thinking was ignorance is bliss and I would deal with it when the time came. Let me at least enjoy a Christmas back in the UK with family and friends. Also, I honestly thought I had been through the worst.
Well, this was the time I needed to know the facts, and the facts are these:
The transplant won’t cure Leukaemia but is the best tool they have to reduce the likelihood of relapse.
If I don’t have the transplant the chance of relapse is almost certain.
The transplant is high risk. If I do have the transplant there’s a 1 in 5 chance that I’ll die within 12 months.
If I survive the first 12 months I could develop lots of long term health problems - and some people wish they had never had the transplant.
As he was telling me this I felt the emotion building up and by the time he got to the 1 in 5 stat I broke down. I apologised but he said that was a completely normal and appropriate response to learning that news.
I do risk assessments for a living. I know that 1 in 5 is not good, but what choice do I have? If I don’t have the transplant I’ll be scared every day that the cancer will come back. This is not something you can mess about with. Just from a bit of back pain I was 3 weeks away from death.
I signed the consent form.
Here We Go
Today I had the Hickman line inserted. This goes into the heart and 2 ports are now sticking out my chest. I can’t say it was a nice experience. I think I preferred the PICC line. Either way, a usb-c port would have been handy!
Tomorrow I’ll get admitted for a week of high dose chemo before the transplant. I should expect to stay 3-6 weeks in hospital and it will be many more months before I can think about working. Money is quickly running out. More on that later.