Onwards and UpwardsHearing the word ‘remission’ is a great thing for any cancer sufferer, but for some reason rather than bringing me an overwhelming sense of relief, it increased my fear of the other r-word all too familiar to many cancer patients – ‘relapse’.
To prevent the second r-word from occurring (it’s pretty common with my particular lymphoma) I had a lot of chemotherapy still in front of me – several months of the tough stuff and then two years of comparatively mild maintenance therapy – as well as a couple of weeks of radiation on my scone (at least, so I thought).
After my first month of intensive induction chemo I was given a break of about three weeks. It was quite a strange time, as I was feeling rather awful and suffering from a bunch of side effects that I was yet to become familiar with and which were all a bit worrying.
My heart rate was out of control, I couldn’t sleep as my mind constantly raced, I felt nauseous every time I ate (and even more often than that), I’d be completely out of breath walking up a small set of stairs, and my mouth was often full of ulcers and blood blisters. At one stage all of the taste buds on my tongue completely vanished, leaving its surface as smooth as an ice rink.
As my treatment went on I realised that the majority of these side effects would dissipate over time, or come and go, and others could be sorted out with a transfusion of blood. Something normally foreign like popping into hospital to receive a bag of blood product became pretty commonplace.
I tried to ween myself off as many medications as possible in the times I spent out of hospital. The antiemetic drugs were handy to break the cycle of nausea, but I didn’t want to become reliant on them. Unfortunately giving up the lorazepam, a super addictive benzodiazepine, wasn’t so easy. Without it I simply couldn’t sleep and the lack of shut-eye was hampering my recovery. I’m still actually taking it now, but I’ve cut down to half a milligram and hope to give it away altogether in the coming weeks.The seven or so months from November to May were split between hospital and home – ten stays in total, nine of which lasted about five days and one longer 22-day stint in February between the sixth and seventh short stint. Each time I was in hospital I had some different chemical concoction to look forward to. Some were worse than others, but none were particularly pleasant.
With the benefit of hindsight, I think the high dose methotrexate was the worst of the medications I received during this part of my treatment. They’d pump 5500mg of the stuff into me over a 24-hour period, then I’d be given folinic acid every six hours to reverse its effects until it was flushed out of my system with the help of multiple sacks of sodium bicarbonate solution. Without the folinic acid recovery, the high dose methotrexate leads to bone marrow toxicity and death, so I was always a bit on edge making sure that the nurses didn’t mess up my meds.
I also copped a hit of the dreaded L-asparginase during this chemo block (which I mentioned in last month’s article). I’d spend the best part of three days connected to various drips and it completely destroyed my insides. I had this on three separate occasions and it seemed to get worse each time.
I was out of hospital for Christmas but back in the day after Boxing Day, and New Year’s Eve was spent curled up in my bed in St Vincent’s with my family and my brother and his girlfriend. A bunch of the chemo patients and their families and friends went up to the top floor of the hospital to watch the fireworks, but I was so nauseous I couldn’t move from my prone position.
Every break from hospital was filled with blood tests, nausea and a considerable amount of anxiety. When your immune system is shot you have to be careful what you eat and who you hang around, avoid any scratches or abrasions and regularly monitor your temperature, your weight, your urine and
your ‘stools’. Every ache and pain seems to be amplified as your mind wanders straight towards worst-case scenarios.
By now I had not a hair on my body, bar a few sparse eyelashes and eyebrows. I looked every bit the cancer patient. Thankfully my weight was under control and after all this chemo I had another PET scan that showed I was still in re- mission. Better still, the radiation I thought I had to have on my brain was no longer necessary, replaced instead by a couple of extra lumbar punctures, which I was well and truly used to.
As I write this I’m about eight weeks into my maintenance chemo and feeling pretty good. Life is slowly getting back to normal. I’m working again (though my output is nowhere near as high as it was before I got crook), I’ve started exercising (as my weight has blown out to about 82kg and I’m looking pretty chubby) and I’m pulling my weight with the household chores.
There are a lot of people to thank for getting me to where I am today. When I think back a year I really didn’t know if I’d still be around to write this. I still don’t know if I’ll be treading this mortal coil this time next year, but I feel a lot more confident about my chances.
The doctors and nurses at St Vincent’s have been incredible, particularly my haematologist Dr John Moore, all the haematology residents and registrars (especially Georgia, Adrian and Prue), and Dr Philip Spratt, who conducted the initial surgery to remove the tumour from my chest. These guys quite literally saved my life.
The team work of my brother James and my partner Georgie was also amazing. Together the two of them made sure that I was fed and kept company in my many hospital stays. They organised visitors when I was up for them and kept them at bay when I wasn’t. James kept the business running while I was out of action and Georgie did the same with the family side of things. I love them both unconditionally anyway, but I guess the experience some- how solidified things. My gratitude is immeasurable and it’s something I will never be able to repay.
My in-laws, Terry and Trish, have also been a great help throughout this ordeal. Their townhouse in Darlinghurst, a five- minute walk from the hospital, has become a second home to my family and I. They’ve cooked, cleaned and helped care for my children and for that I will be forever grateful.
My mum has also gone above and beyond, coming up from Melbourne whenever possible to stay with my family and help out around the house. It’s always nice to have an extra set of hands when you have two young children, and they seem to love the extra attention (and presents!).
This is probably a good time to also thank all my friends, clients and random acquaintances who cared enough about my battle to come and visit, call, message, or send care packages or food vouchers of some sort. Even the responses to my social media posts are much appreciated. It’s just great to know that people give a stuff about you when you’re going through a rough trot.
The final thankyou, and I’m sure there are many that I have forgotten, goes to my landlords and neighbours, Georg and Chan. We’d only first met a month or two before I was diagnosed but they welcomed us into their neighbourhood with open arms – collecting mail, mowing lawns, putting bins out, entertaining the kids and feeding us all sorts of delicious fare. It’s great to know that there are humans like these in the world.
To wrap this up, I’m currently doing really well and feeling better than I had hoped. This is the last you’ll hear from me about my medical dramas and from here on in I’ll get back to writing about things of greater interest to The Beast readers, the important things like dog poo droppers, parking rangers, council rates, westie blow-ins, traffic, inconsiderate neighbours and crazy real estate prices.
Onwards and upwards, as they say.