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 …
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:
Paragraph 3 just sums me up again. We haven’t done this much entertaining in a long time. And you already know where my head is at.
Isn’t it nice to know it’s not just you?
I think most stages of the cancer journey is about the almost all-consuming dread. First it is the fuck I have cancer dread, then the fear of the unknown treatment wise dread – what if it hurts, what if I am sick, what if I have some freak reaction, what if… Then it is the dread of the known – another round of chemo that will make you I’ll another test. Add that to the constant waiting and it is no wonder cancer is so all consuming to those going through it.
It does eat you up Jo but from my experience it starts to spit you (or should that be shit you) out slowly when it’s done. I’m going to put my thoughts together about coming out the other end. Life is certainly different, but also in many ways the same.
Wow! thanku for sharing that. such an insight into a totally horrendous time of your life. BTW – that party was THE best kids party I have been to, altho i may have cursed the party bags just a little 😉 My fav part was the treasure hunt but the piñata was def a fav of the boys. xox
I must give Dave his due credit here, he’s the creative genius in this partnership!!
You nailed it !
I just passed 2 yrs of curvial (seriously I meant to type survival) from Triple +Breast Cancer on 13th June.The same day I laid upon a bed of steel for a Pet scan to see if cancer #2 within 20 months (or less because it was there a while – whatever that was the date of my surgery for malignant Sarcoma in the thigh removal) had taken my lungs hostage or if BC had ? elsewhere in my broken body.
Oh I also finished 7 wks (30x) radiation June 12th too for the Sarcoma. The bitch burn didn’t get me till 4-5days week post rads.
It bites .
Thankfully it was good enough news (on the 17th June) – and I wait in 6 monthly windows for more good news.
I couldn’t plan much for my big boy’s 21st – it was too much.
Now I ready to gun it all for my twin boys 8th birthday – Minecraft party on Saturday – birthday next week. For the same reason as you.
I’m resisting the urge to paint the new shed green (and black) …my hubby would hang me from the purlins (beams) first.
I used to adore Richard Marx – thanks to my Hub.
I’m happy to be waiting , and waiting and waiting for as long as it takes. One day at a time, one moment at a time some days.
It gets easier and I forget I have no boobs but I do miss bra o clock (maybe).
(I guess I should have written this on my own blog 😉 )
LOL Trish feel free to write ‘what she said’ on your blog and link over here 😉 Boy, you have been through the ringer too many times. So glad news has been good of late. Minecraft party – my boy would go nuts for that too!!