I’ve just completed four weeks in isolation. My last update was the day before transplant day after undergoing a week of conditioning chemo.

Transplant Day

I was surprisingly calm the morning of transplant day. I put on my Unwind playlist and listened to some calming music. Rach, Lauren and my parents arrived to be with me for the transplant. It broke the 2 visitors per day rule but nobody batted an eyelid as this was not a normal day.

The nurse from the transplant team arrived in the afternoon and delivered the special package. The donor had done really well and delivered easily more blood than they needed.

The bag of blood with the new stem cells was hung up and connected to my central line. It was funny looking. I’ve had plenty of blood transfusions but they were always a bag of deep red blood as you would expect. This bag was murky and orange. The main thing was that it contained 500 million stem cells.

The infusion took place over a couple of hours and the transplant nurse stayed with me to monitor it for the duration. On one hand it was a simple blood transfusion. On the other hand It was a hugely emotional experience and I was under no misapprehension as to the significance of it. Pretty quickly the grafting process would start and my body would be building a new immune system - using someone else’s stem cells. My blood DNA would change. This was a huge milestone and would hopefully seriously reduce the risk of Leukaemia returning, or, my body could fight it and it could be the beginning of serious complications due to host vs graft disease.


I was told to expect to spend 4-6 weeks in hospital. My goal was for it to be 4 weeks and not a day longer. Of course, much of this is out of your hands. However, there are things you can do to reduce the chances of it being longer. I was determined to do everything right. I would take all the meds, get the timing right for anti-sickness and pain relief, keep on top of the mouthwashes to reduces the severity of mucusitus, keep clean and try not to stay in bed all day, etc, etc.

I’m really not sure if any of this made a difference. I’ve had mucusitus with every chemo cycle and the same happened this time. I think I may have delayed it a few days but sure enough, about a week and a half after finishing chemo it quickly set in with a vengeance. I couldn’t swallow anything. They had to switch my tablets to IV meds and I was on a fluid diet for a week. I also got all the usual chemo side effects - vomiting, fatigue, diarrhoea, etc. Strangely enough, I kind of took this all in my stride. I’ve been dealing with this shit since July so it was nothing new.

What did give me strength was the daily visits from the consultants who told me I was smashing it. At one point, the consultant told me that at this stage in the cycle most of his patients were crying under a blanket wearing a nappy!

Inevitably all my hair has dropped out again. It happened about a week later than is usually the case so I thought I’d got away with it this time. Nope. It was gone in no time.

I got to week 4 and I became obsessed with my daily blood results. To get out of there my neutrophils count had to be above 1 and I needed to be off IV for any other issues that I was dealing with. I had a few - acute kidney disease because I wasn’t getting enough fluid, low potassium, magnesium, and other things that would pop up.

In week 4 they commenced with G-CSF injections to stimulate the production of white blood cells. The side effect of this, which I’ve dealt with before, is severe bone pain. I usually only get it the first couple of nights but this time it lasted 4 days. The second night was the worst, I just couldn’t get the pain under control. I had a Fentanyl patch on my back and thy were giving me oxy-codone but it wasn’t enough. I was pacing around my room in agony. Eventually they doubled the dose of painkillers and this did the trick. The next night I made sure I got the painkillers in early in advance of the severe pain - it always seemed to kick in around 11pm.

The first results came in - Neutraphils at 0.15. It was a start, but it was only 5 days before my goal of getting out of there after exactly 4 weeks. The next day - 0.28. Then the following day - 0.57. Then - 1.1. I had made it. I had also managed to get all the IV stuff switched back to oral tablets. With one day to go, barring some last minute problems, I was on track to be released.

Discharge Day

I was out of there, but, for anyone who has experienced stays in hospital you will know that discharge day is the longest day of the hospital stay. The problem is always pharmacy. It was the same in Australia. They told me to expect to not be discharged until about 6pm. 6pm came and went. I have no idea what happened but I didn’t get discharged until 1am. It was crazy. My wife was getting increasingly agitated. The nurses on the ward were constantly apologetic but it was completely out of their control. I have no idea what the problem was but it seems to me that pharmacy is completely dysfunctional. Is it lack of staff? Process problems? Who knows. It did take the shine off exit day. By the time we got home in the middle of the night I was exhausted.

It doesn’t matter now. Home sweet home.

I say home sweet home but in truth it’s probably going to be a while before this seems like home. I only had a few days in our new house before hospital admission, so everything is really new. I’m sure it won’t take long. It is nice to sleep in my own bed and not get woken in the night multiple times for obs.

As I explained in my previous post, now is the time for home isolation. I have no immune system so it’s a case of being really, really careful to avoid picking up anything that will lead to me being hospitalised again. Everyone has told me that as careful as I can be it’s pretty much inevitable that I will end up back in. Nearly everyone who goes through this does - multiple times.

I’m taking no chances though. If I have any visitors they get temperature checked at the door and need to wear a mask. They know not to visit if there’s any signs of sickness. If I go out it’s for fresh air only - a walk in open spaces. I won’t be going in any shops or restaurants, even with a mask, until I’m well on the road to recovery.