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:

The Weight of the Wait

I had a lot of time on my hands yesterday to think about the subject of waiting, as my 20 minute tyre repair turned into a two-hour ordeal trapped in the rubber stink and decade-old magazine hell that is the tyre repair shop’s waiting area. According to researchers, we are more likely to tolerate having to wait for something if what we are waiting for is desirable, and we have something interesting (or at least distracting) to do whilst we wait.  Clearly Bob Jane has not been keeping up with the research.

We spend a lot of life waiting. Fifteen minutes for our prawn chow mein and special fried rice on a Friday night, 30 minutes because the dentist is performing a particularly tricky root canal (the sound of which will never leave me), 10 minutes in a queue for movie tickets. Most of this waiting is done without much thought or attention – we check Facebook on our phone or read a New Idea from 2003 – and next thing we know our number’s been called and we’re on our way.

Then comes cancer. Cancer is all about the waiting. And the waiting is fraught and excruciating and ongoing. My first wait was less than 24 hours – I had a biopsy done at 2pm on a Thursday and by 10am the next morning the call came through. My next wait was from seeing the surgeon to having the surgery – only a day but one where my mind buzzed pretty much non-stop. The wait in the pre-operative waiting room was so sad, my husband by my side listening to my incessant small-talk which I seemed unable to stop. Anything to avoid the silence. Then, once I was on the operating table, I had to wait whilst they set up the IV lines on my left arm. They normally use the right side but that was where the surgeon needed to stand to remove my breast and lymph nodes. As I waited, I placed my hand over my right breast, and remembered how my infant son had fed pretty much exclusively from that side from day one, he was always fussy on the left but comfortable on the right. That wait ended as the anaesthetic took over. I often wonder if my hand was still on my breast when they started the surgery, and if it is what all women undergoing a mastectomy do as a natural, protective reflex.

Once I awoke from the surgery, I started waiting for the nausea to stop. Oh, the nausea. I vomited so much that I wet myself, which was when I discovered that not one but both of the nurses looking after me in recovery where in my senior class at high school. I hadn’t seen either of them in 25 years, yet here we all were. If it was part of a movie plot you would think to yourself ‘oh bullshit, as if that would happen’ but it did. Rachael and Rowena. They stayed with me for hours as they worked with the doctors to try to get my nausea under control. That waiting was made so much more tolerable by that double blast from the past, and I will be eternally grateful for the set of cosmic coincidences that made it happen.

My next wait was for the surgeon to come and give me the news on my pathology the following afternoon. I cried that night (once the pethidine high had finally worn off) in terror of the unknown, and then again the next afternoon when the surgeon delivered his news – the cancer was all through my lymph nodes, it was as aggressive as it gets, and – he drew breath at this point and the wait, although only a few seconds, seemed eternal – he suspected that the cancer had probably already spread elsewhere. And that’s when the hardest wait of all started.

To find out if the cancer had spread I had to have a CT scan and a bone scan. Because of the various dyes used in the tests, and because I had just been through a massive surgery, the tests had to be done on separate days. It was now Friday evening and the first test would be done Monday, and the second Tuesday. And then I would see the surgeon Tuesday at 5pm. A full four-day wait to find out if I had terminal cancer. Maniacs, despots, psychopaths and crazies of the world take note – if you want to torture someone (and those close to them), tell them they definitely have cancer, but then make them wait four days to find out if it’s terminal.

I spent those four days pretty much non-stop in the company of my husband, whose unwavering love and support were literally the only things keeping me afloat. For 96 hours I waited. To pass the time I cried, raged, mentally planned my funeral, had horrendously difficult conversations with friends and family, and wondered if perhaps this would all be easier if I wasn’t an atheist. And when, finally, it was 5pm Tuesday, I sat in the surgeon’s office waiting for him to deliver my fate. He came straight from a day of surgery to our appointment, so was just reading my test results as he walked in the door. Time was suspended – again – whilst I searched his face for a clue about what he was reading. Then, the words: ‘Tests are all clear’, at which point I started crying and laughing and would have probably also peed my pants except that Rachael and Rowena weren’t there to help me change my undies.

That was the end of the worst wait, but little did I know about how much more waiting there was to come. In fact, so much waiting that it will need a whole other post, for which you’ll have to wait.

In the meantime, I’ll leave you with this. As I was driving to work this morning, soaking up my 15 minutes of daily thinking time, this post was forming in my head. As the ideas tumbled around in my brain, I realised that this song was playing on the radio: