I didn’t plan on writing this article. I genuinely thought I was in the clear. A survivor. Cured. Life back on track. Wishful thinking? Maybe.
As a cancer sufferer/fighter, there are a few words you really don’t want to hear from your haematologist/oncologist, and while the term ‘relapse’ isn’t as hard to hear as ‘terminal’ or ‘palliative care’, it’s still a confronting and heartbreaking couple of syllables.
It’s been nearly six months since I received the devastating news that my lymphoma had relapsed. After experiencing some concerning symptoms in early March, I contacted my haematologist and let him know that I had a bad feeling about things and that I thought I should undergo a PET scan, just in case. I was, after all, only about two months off having my one-year PET scan anyway.
While he doubted that I’d have relapsed, having seen how well things had been progressing for me and given that I’d been doing everything right in terms of my treatment and my general health, he understood my desire for peace of mind and booked me in, noting that if I was feeling better in the fortnight between booking and appointment he’d be happy for me to cancel. By the time the PET scan appointment came around I was feeling a lot better, but I decided it was worth doing regardless.
The phone call came through around lunchtime on a sunny Thursday in early March. I knew immediately from the tone of the doctor’s voice that the result was not going to be what I wanted to hear. I had indeed relapsed, with a couple of significant masses taking up residence in my stomach and pancreas. After about nine months of relatively normal life everything was about to be thrown into turmoil. Again.
I was told that I’d need to go into hospital (St Vincent’s, Darlinghurst) on the Monday to begin a new chemo regime and that my stay would most likely be a long one. Having established a life down at Austinmer in the Illawarra, this was extremely uprooting. My little boy had only just started kindergarten six weeks earlier and had forged friendships with a fantastic little crew down the coast, as had my partner Georgie and I.
I spent around eight of the next nine weeks in hospital, a 30-day stint followed by a 25-day stint, with a nine-day break in between. I actually handled the chemotherapy drugs reasonably well and only felt nauseous for a few days after each cycle, but it took quite a long time for my blood counts to recover to normal levels and I was also struck down by three significant infections while those counts were low, which meant a heap of tests and some heavy doses of antibiotics, as well as having to endure hours of rigors, vomiting, sweats and generally feeling terrible for a couple of days at a time until the medication got on top of the infection.
After the second round of chemo I was discharged from hospital and told to plan a family holiday in a couple of weeks’ time, before shit got ‘real’ (or even more real, I guess). Assuming I’d gone into remission, which was looking likely after a CT scan showed significant reduction in the existing masses, I’d be going in for a bone marrow transplant in about six or seven weeks, depending on the availability of my closely matched German donor.
Another PET scan revealed that I was in fact in remission and the past couple of months of treatment had done the trick. The German donor was locked in to donate bone marrow in early July and everything, it seemed, was back on track. Good news. Finally. Worthy of an 11am Bloody Mary from Bill’s for the delighted/relieved missus!
We booked a family holiday to Port Douglas and Cape Tribulation in order to escape the cold of winter for a couple of weeks and to enjoy some quality family time while I was in reasonably good health, before the impending shit storm that I’d heard a bone marrow transplant unleashes upon your body – four to six weeks in hospital, followed by a long, tough recovery that lasts in excess of six months, if you’re lucky. Some people still feel the effects years after their transplants.
Needless to say, the holiday was a blast, though not without its share of drama. My daughter ended up in a remote medical centre with croup and, a day later, Georgie pulled the car boot down onto her head, with the gaping wound needing to be superglued together at Mossman Hospital. I also came down with a virus of some description (probably caught from my little girl), which made for some nervous nights in the middle of the bush as I wondered whether to head in to hospital or hope that I had enough white blood cells to keep it in check. In the end I risked it and came through okay.
After our North Queensland sojourn I still had a few weeks to wait until I’d be admitted for my bone marrow transplant, time I used to catch up with friends, tick off all of those life admin tasks, hang out with my family and do my best to stay out of harm’s way (read: influenza, viral infections, etc.), which is easier said than done during winter in Sydney.
Everything seemed to be going along smoothly until my nose started to run a little. A bit of green phlegm built up in my throat and, just a day or two short of transplant commencement and one day after receiving a perfectly clear PET scan, everything got put on hold. The week-long preparation for transplant, known as ‘conditioning’, is simply too brutal on the immune system to go into with any viruses or bacteria lurking in your body, so it was a case of just having to wait. I was in complete remission, what would an extra couple of weeks waiting matter?
Well, matter it did. That couple of weeks extended to a month, thanks to a second virus, and then some even more worrying symptoms emerged – pain in the abdomen, sweats and just a general feeling that something wasn’t right. I put it to my doctors who all thought the likelihood of another relapse so soon after my last PET scan was exceptionally low, bordering on impossible, but we decided to have another scan regardless. I was right. I know my body too well, it seems. The lymphoma had returned and in a rather aggressive fashion, with two masses around my pancreas and another in my stomach. A huge setback.
So what was the next plan? Radiation. 18 hits of the stuff to the pancreas and stomach region over a four-week period with the aim of another remission then back to the transplant drawing board.
The whole radiation thing sounded pretty scary, and the potential side effects rather unpleasant, but it turned out to be a breeze. It was actually one of the more enjoyable parts of my treatment, thanks to the staff at Genesis Radiation (particularly the soothing/attentive/caring vibes of Dr Raj Jagavkar, the radiation oncologist tasked with fixing me), the routine surrounding my treatments (which only went for about 20-30 minutes each day) and the absence of side effects. A coffee and crossword at Son of Frank in Darlinghurst with my brother and a varying cycle of mates were an essential part of the radiation ritual.
The intent of the radiation was to knock off the existing masses while hoping that no other disease showed up in the meantime, then head straight back into transplant land. The effectiveness of the radiation (and the chance of transplant proceeding) was all to be revealed via another PET scan a week post treatment.
It should be noted here that some of the details of the pencilled in transplant had also changed significantly. Looking at all the odds, the effectiveness of the closely matched German donor transplant was really no different statistically to using a haploidentical (half-matched) sibling, which I have available in my brother James. His stem cells would not only be as effective in potentially granting me a cure, but gaining access to them on short notice would be logistically far superior (he lives in Clovelly, not Cologne, after all).
The radiation seemed to have done its job with aplomb, but the PET scan still revealed what we hoped it wouldn’t – a two centimetre mass had popped up on my pericardium, the sack that lines one’s heart. Another bloody setback.
With disease in my system, a stem cell transplant is not an option, so the quest for remission continues, but I still have a couple of cards up my sleeve.
At the time of writing I am a couple of weeks into a trial of an immunological treatment with a drug called Daratumumab, an antibody that is able to locate a specific protein present on my malignant T cells and destroy them. I hope it’s working but I really don’t know. I’ll find out on October 15, just after this fine publication has gone to print.
Cancer is a real prick of a thing, regardless of the variety you are dealt. The lymphoma I have been handed has been particularly difficult to deal with, mainly due to its rarity, but I will keep soldiering on and keep fighting until it has effed off for good. My family needs me to do as much.
Despite all the crap I’ve been through, since March I’ve been lucky enough to celebrate the birthdays of my partner, my son (six) and my daughter (three), I’ve become engaged to the love of my life, Georgie, after 11 years, two months and four days (we may even be married by the time you read this) and I’ve done countless crosswords (and sipped far too many coffees) with my brother, who has fed me, entertained me, sat beside me and nearly mastered the cryptic crossword with me, all the while pushing out an edition of The Beast each month. My little boy has learnt to ride a bike without training wheels, he’s caught his first fish, we’ve read some great books together and he and my daughter are forging a great little (at times hostile) friendship together, which I have been able to witness so closely. In many ways I’m the luckiest man on the planet and I still see their future with me in it.
I’ve heard the word ‘relapse’ far too many times this year, but I’m yet to hear ‘terminal’ or ‘palliative care’, and I’m still clinging to that with all my strength. If all goes according to plan, my next instalment in The Beast will be titled ‘Cured’. Wish me luck!