In my last update in November, I talked about how I was feeling good, and felt positive about my recovery. I spoke too soon.

Another bone marrow biopsy in December, thankfully, was MRD negative confirming I’m still in remission. That’s the main thing. Otherwise, the last quarter has been setback after setback.

In early December, my blood levels were still up and down. This is normal after CAR-T Therapy. The haematology team decided I needed a boost, so they increased the G-CFS injections to stimulate white blood cell growth, specifically neutrophils. I didn’t react well. I normally get back pain the following day, but the increase left me in constant severe pain. So, it was back on the strong painkillers - and back to the inevitable constipation. They also increased the dosage of daily oral chemotherapy. My body didn’t react well.

The team dropped the injections and chemo back down, but I then had a flare up of pain in my side. I assumed it was kidney stones again. I’ve had kidney stones for years, despite generally following all the dietary recommendations.

The one benefit of being a leukaemia patient is I don’t have to deal with NHS waiting lists. I had a scan straight away and the urologist confirmed what I already knew - small stones in the left kidney and scarring on the right kidney. I had scans every year in Australia and the situation hasn’t changed for about 5 years. Until the stones pass, I have to accept that every now and again, they will move around, causing pain. Medical intervention is too dangerous given my current condition, so I have to hope they don’t grow - or, better still, pass through me without any problems. The medical advice: drink lots of water and follow a low-protein diet (despite protein being good for my muscle recovery).

In mid-December, both Rach and Lauren were sick, so I was isolating in the bedroom. I’ve spent so much time in hospital since initial diagnosis I do everything I can to avoid another stay.

The isolation didn’t work. I picked up the respiratory infection RSV just before Christmas. RSV is doing the rounds, but given I have a compromised immune system, I was worried I would end up in hospital for the Christmas period. Luckily, the RSV never progressed beyond the usual symptoms, and I could stay at home. When you’re immunocompromised, it’s very easy for a simple infection to turn into something like pneumonia and a stay in ICU. The consultants remind me that I’ve been very lucky to avoid ICU so far, given everything I’ve been through.

I just got over RSV in mid-January in time for us to help Lauren move to London.

As soon as I returned, I had a flare up of stomach pain. This subsided on the third day, so I didn’t think much of it. I thought it might just be down to eating out for the first time in a while.

A couple of weeks later, it happened again, and there was no obvious trigger. This time, by the third day, the pain was only getting worse. We rang the CAR-T team, who asked me to go in for tests. Blood tests showed heightened infection markers. I was immediately admitted. Yet again, another hospital stay.

After a couple of days the pain subsided. A CT scan showed an inflamed bowel. I have no idea what caused it, neither do the experts. They then decided it likely wasn’t an infection, so they discharged me.

The thing is, I’m still on a load of medication to deal with the chemo, stem cell transplant and CAR-T therapy side-effects. Diagnosing a specific cause of any of the symptoms is a tricky business.

February 9th marked the 1-year anniversary of my stem cell transplant. This is normally a major milestone - year one for my immune system. Except, of course, it didn’t work. I relapsed. Conditioning chemo for the CAR-T therapy wiped my immune system yet again. Despite this, it’s still a milestone. I vividly remember that conversation with the head of the transplant team. I was given a 1 in 5 chance of dying in the first year if I didn’t have the transplant. With the transplant, serious health complications are still common. Well, it has been a year. Im still here and my organs are relatively intact. I’m still at risk of graft versus host disease but the risk should now be lower. I also still find it amazing that I’ve got a different blood type and blood DNA.

It’s now mid-Feb and I’m finally back on track. I’ve restarted the vaccination program, yet again. I’ve now had the first COVID jab three times. The childhood vaccinations are yet to come.

The setbacks mean my physical fitness is no better than a year ago. I’m working on it. The docs want to increase my chemo again. I’m anticipating more side effects.

I continue to hope for a full recovery and a return to work sooner rather than later. This time, however, I’m more realistic about target dates. I keep being told it’s still early days. When this thing started I hoped for the best case - 6 months and back to work.

It has now been 19 months.