The Wait’s End

This is the sequel to my previous post The Weight of the Wait. It’s like the Hangover 2, except nobody goes to Thailand. Although all this bloody waiting would no doubt be much more pleasant done on Nai Harn Beach with a Margarita in one hand and a crab cake in the other …

There will be a short break in programming whilst we all imagine being on this beach ...

There will be a short break in programming whilst we all imagine being on this beach …

So in my previous post we got up to the bit where I found out that my cancer wasn’t terminal. Maybe I should’ve waited until now to reveal that part – I could have done a cliffhanger ending, Neighbours style. Maybe next time (little cancer joke there, for non-cancer people I’ll explain THERE IS NO NEXT TIME). Anyway, once I found out that the cancer wasn’t stage 4 (which is terminal) but stage 3C (which is the final station before the terminal), I embarked on what ended up being eight months of treatment. And a shitload of waiting.

The wait between surgery and the start of chemotherapy is usually 4-6 weeks, and in my case it was five weeks. I recovered really well from the surgery, and was allowed to drive again 10 days afterwards. Of course I still had a boob missing, and a massive hole in my armpit out through which they’d dragged my lymph nodes, but to the casual observer I looked completely normal. I spent my days catching up with friends, cooking extravagant meals for my family (creme brulee anyone?), and napping on the couch. It was like being on holidays, except that I had bastard cancer and pretty much all I thought about in every waking moment was bastard cancer. I socialised a lot during this time, as a way of trying to avoid the giant fucking elephant in the room, but instead I developed the uncanny ability to participate fully in a completely mundane conversation whilst still thinking about cancer. I’ve made some cancer friends of late via Facebook (big shout out to the Cancer Clique) and they have confirmed that the ability to behave totally normally whilst slowly going out of your skull with worry is something that we’ve all experienced.

Finally, it was time for my first round of chemo. Seems insane that you’d be keen to get started on some cytotoxic poisoning, but it meant that the wait for this next step was over. I stood out like a sore thumb in the chemo waiting room on that first day. I was young (the average age of cancer diagnosis in Australia is 65.4 years), I looked healthy (because for all intents and purposes I was – breast cancer does not normally make you ill until it moves to Stage 4), and I had a full-head of thick, lustrous hair (but not for long!). Finally, after what seemed like yet another eternity, my name was called, and with my husband I entered into the chemotherapy ward for the first time.

Chemotherapy itself is comprised pretty much of waiting, with the occasional antihisthamine-induced hallucination thrown in just to keep things interesting. When you arrive at your allotted time you are weighed (despite what telemovies would have you believe, the steroids that you are given during chemo for breast cancer often cause women to gain weight) so that your drug calculations can be done. You are then hooked up to bags of IV fluids, steroids and anti-nausea drugs, before they move onto the real deal. You know it’s serious gear that’s being pumped through your veins when the nurses are wearing full gowns and masks whenever they are in your vicinity. The time taken to infuse the drugs depends on the type of chemo being used. Mine took between three and six hours, which represents a lot of waiting. You can’t wander off to the cafeteria because you’re hooked up to the drug pumping machine, so apart from going to the loo every three minutes (because you are having so many IV fluids) you are stuck in a ward with nought to do, except think about cancer and wonder just how sick this stuff is going to make you.

I was lucky to have a family member or friend come with me to all of my eight chemotherapy rounds, so I had lots of distraction, with the added bonus of having someone to do my bidding at the cafeteria. Chemotherapy didn’t ever make me nauseous – I did lose my taste for some things and suffer with indigestion – but mostly I remained, as I have always been, which is very good on the tooth. If I hadn’t had a bald head by week two of treatment, and been minus all other body hair by week eight, you would never have known by looking at me just what was being done to my body.

As well as the waiting at each chemotherapy treatment, there is the waiting in between each one. My wait was two weeks, as I had a treatment every second Tuesday. The first week after chemo would pass in a haze of fatigue, steroid mania, searing indigestion and excruciating bone pain. Then the next week things would improve physically, but I would start to be filled with an almost all-consuming dread about what was coming next. The day before my final chemotherapy session, I had a meltdown of spectacular proportions, where I cried pretty much uncontrollably for hours on end. To me this represents the nadir – the absolute low point – of my treatment. My body had been pushed almost beyond its limits – I was severely anaemic and suffering constant bone pain so severe that morphine had little impact – and the tenuous control that I had left over my mind was rapidly slipping away. But like every chemotherapy patient does, I fronted up to the cancer centre the next day with a smile on my totally hairless dial, and got on with the business of living.

Chemo is over, so surely that’s the end of the waiting? Nope. I got a four-week break to get over the anaemia, before starting 25 days of radiotherapy. During that four weeks I pretty much just slept and wondered what the fuck had really happened to me. Radiotherapy is a total doddle once you’ve done chemo, except if you are one of the few people who has severe skin reactions to the radiation. I was one of those people, so by week five of radiotherapy my skin was peeling off in sheets, I was constantly dehydrated because of the amount of fluid I was losing from my burns, and I was again pushed to my absolute limits.

The waiting for treatment to be over happened on 2 May, 2013 which was also my little boy’s 5th birthday. Organising his party got me through a lot of the waiting during radiotherapy, and also gave me not one but two desirable outcomes – I’d finished active treatment and my baby was having his first proper birthday party, with 25 of his closest buddies. I think I will always look back on that party as one of highlights of my life. I suspect there may have been many parents cursing me afterwards, as my joie de vivre was expressed in party loot bags so heavily laden with lollies and chocolates that the plastic handles were stretched to breaking point.

I’m now 19 months into what I can only hope is the final wait of my cancer journey. To be given the all clear, I have to make it to five years post-surgery without a recurrence. 41 more months. I am getting through this wait one day at a time, concentrating on my desirable outcome (to be cured!) and distracting myself with interesting things while I wait. This blog is one of those things. I plan to do a fair bit of my waiting in here, so hopefully you will join me and help pass the time.

I can’t resist ending this post with another song about waiting. I haven’t heard this one on the radio for a very long time, but those of the same vintage as me will appreciate my revival of the glorious flowing mullet of one Mr Richard Marx:

Getting Pissy With It

pciture of car for sale

I used to have a pretty awesome memory. I could tell you the telephone numbers of kids I went to school with 30 years ago, and I never missed a trick with the bazillion excursions, incursions, dress-up days and appointments when my son was in daycare. In fact I became the president of the centre’s management committee on my shining ability to never miss a trick. That and the fact that no-one else nominated. But I digress ….

My husband (let’s call him Dave, because that’s his name) has a self-confessed shithouse memory, so our relationship has always been the perfect yin and yang of me remembering everything and him not having to bother to even try. I made us both look super-organised, with the added bonus of me being able to feel superior about it. Marriage perfection right there.

Then I had chemotherapy. They tell you up front that the drugs they pump into you may leave you with something called Post-Chemotherapy Cognitive Impairment (PCCI), which is better known as chemo brain. Chemo brain affects visual and semantic memory, which basically means that you have difficulty multitasking, comprehending what you read, following the thread of a conversation, and retrieving words. But of course when you are tossing up your options, and they are chemo brain or death, you gladly sign yourself up for chemo brain.

During treatment it doesn’t really matter if you have impaired cognitive function – in fact it’s an advantage as you live through your days in a shrunken world of injections and baldness and fear. But then you come out the other end of treatment, and are launched like a cannonball (literally – see earlier comment about baldness) back into the world. You go back to work, you cook meals and go grocery shopping, pay bills, plan holidays, organise playdates. And you soon realise that the old grey matter, well she ain’t what she used to be. People casually invite you to dinner on the second weekend in May and you say sure, that sounds great whilst you internally struggle to remember what year it is. When you are asked at the bank during a security check for your husband’s date of birth, you stand there blankly, staring awkwardly at the teller whilst you try to calculate backwards from this year based on his age, but then give up when you realise you might be able to work out the year but you haven’t a clue about the day or the month.

My most recent chemo brain moment happened this morning. Last week, I had dutifully contacted the local dealership to organise for my car to have its 80,000km service today. Because I work full-time, the exercise of putting my car in for a service requires a bit of planning as I have to drop the car off before work, borrow a car from the dealership for the day, get to work on time and then at the end of the day do the whole process in reverse, and all before 5pm which is when the dealer shuts up shop. So this morning I dropped my car off, collected my loaner – which had $9995 written in white paint across the windscreen (cos there really is no such thing as a free ride) – and drove to work. I mentally patted myself on the back for arriving at something fairly close to my starting time, made a coffee, and settled in at my desk. At that point I noticed I had a voicemail message: Hello Julie, it’s Carly from the dealership. Umm, your car had its 80,000km service in January, so really there’s not ummm anything we can ummm do to help you today. Feel free to come and pick it up anytime. I swear to God I have no memory, NONE, of taking my car in for a service in January. That, dear reader, is chemo brain right there. Or maybe I should call it by its acronym PCCI – because pissy is how this whole chemo brain situation is making me feel.