Tomorrow, Maybe.....

It’s been a frustrating time recently. My donor cells are now at a stage of development where they should begin to regenerate and restore some of my immunity. Once my neutrophil count rises above 0.5 x 10^9/L, I will finally be able to say goodbye to the hospital ward and return home, hopefully permanently. Yet knowing how long the donor cells will take to regenerate can be difficult to predict. Blood samples are taken from my Hickman catheter every night and the results of the tests are available by the time I wake up in the morning. It’s obviously a very exciting prospect to be able to return home to my wife and daughter, particularly given that I’ve been trapped in the ward for over three weeks now. So each morning’s result is eagerly awaited with crossed fingers and a lot of hope.

On Friday last week, my blood test detected the presence of neutrophils for the first time in nine days (0.1 x 10^9/L). The reading certainly gave me hope that the donor cells were finally regenerating, but at the same time I knew in myself that my excitement had to be contained. It was only a single blood test after all, and the neutrophil count was only just above the detectable threshold. However, a visit from the doctors that morning changed my outlook and my level of enthusiasm in an instant. They were suggesting that it could be time to start planning for my discharge and that I might be able to go home on Monday, or perhaps Tuesday at the latest! Hooray!! I went to bed that night feeling very excited and perhaps a little bit relieved.

Unfortunately, the next morning was very deflating. A follow-up blood test had showed that my neutrophils had retreated back to zero. My prospect of going home early next week had vanished overnight. A subsequent explanation from the doctors indicated that ups and downs are very common between successive blood counts and that I shouldn’t be worried about the engraftment not taking. That’s fine, I can accept that, but it failed to explain the basis of their optimism from the day prior. Oh well, nothing more that can be done except to return to my waiting room in frustration and await the next set of blood counts. Tomorrow, maybe…….

Aside from waiting for engraftment, I can report that the time period since my last post (days +9 to +19 post-transplant) has been relatively uneventful. In previous posts, I have described that this specific window of time post-transplant was when the side effects of the chemotherapy are felt most acutely, with extreme tiredness, mouth ulcers, nausea, fevers, infection and hair loss to be expected. One of the nurses even described this phase of the transplant as a “write-off”.

However, according to the doctors who work on the transplant ward, there are a small proportion of patients who are lucky enough to escape the full force of these symptoms during this period and maintain relatively good health. Since today is now day +19 post-transplant, I can happily report that I have been one of the lucky ones. I never felt overtly tired, I didn’t experience any mouth ulcers, and I only had one low-grade fever that was quickly contained with antibiotics. My hair and beard have thinned significantly (encouraged further along with a set of clippers) and I have lost 6-7kg in body weight since I first entered hospital. But apart from a few difficult stages during the chemo regime, I have always felt in good health and in good spirits throughout the whole procedure. So far, so good.

I’d like to take this opportunity to thank everyone who has offered their love and support during this very surreal experience. It’s been very important to me to have a wonderful and wide-ranging community of support out there. Most of all, I want to send a big thank you to my incredible wife Nicole. It’s an enormous effort to balance domestic life, working life and motherhood while also managing to hold the emotions of having a husband locked up in hospital. And yet she has still been there for me in spades, sleeping a number of nights in an uncomfortable foldout bed next to me (also made possible by my wonderful mother and mother-in-law), wrangling Jarrah in the morning in preparation for her regular daddy visits, while also bringing in clean washing, supplies, and the occasional home-cooked meal.

The journey has never felt lonely thanks to you Nicole. You’re an amazing woman and I love you deeply.

P.S. Apologies for the lack of photos. I know everyone is keen to see me bald, but they’re going to have to wait until next post.