Embracing the dreaded Big C and getting on with life
Up until this point, I had been brave, courageous and overwhelmingly positive. I had a kick-arse attitude which prompted me through surgical recovery. But I had a lingering fear of that impending oncology appointment.
If I am, to be honest, I was shit scared. I don’t admit that much, mostly because I’ve got a set of hairy balls and nothing much generally phases me. This appointment certainly did.
The oncology waiting room was filled with beautiful women … who were all bald or had their noggings covered in peach fuzz. I remember as clear as day, bright lipstick, colourful clothes, laughter and bald heads.
Here I sat with a head full of luscious thick hair listening to them banter and laugh amongst each other with sunshine reflecting off their shiny scalps. Feeling totally out of place and terrified of the unknown and unexpected. My need for control lurching full steam ahead.
I don’t often feel left out but I did that day. This wasn’t a group I wanted to join. I had made a surgical decision to avoid adjunct therapy, and yet pathology results forced the decision and this impending and subsequent appointment.
What had originally been estimated to be only ductal carcinoma, revealed a high-grade hormone receptive invasive tumour amongst the tissue. Hidden from both mammogram and MRI, I am grateful to have made the surgical decision of mastectomy in hindsight.
Spirit had spoken loudly and guided. I listened intently.
My feelings must have been all over my face sitting in that rambunctious waiting room. Several of those gorgeous women gave me winks or a reassuring smile. I just wanted to crawl up my own backside and hide from the reality of being there in the first place.
That was the day my cancer diagnosis had become very real. Even though I’d had significant life saving (and altering) surgery, that was one of the days I reaffirmed what strength really is. It’s so much more than a brave face or being humorous or positive.
That was a day to make a choice to bloom from within or wallow and throw a pity party for one. That was a day to embrace the moment and dig deep into the warrior woman amazon archives.
Cancer forced me to show my belly. I had no choice but to allow myself to be vulnerable. Needless to say, I cried as soon as I entered the oncology liaison nurse’s room, for I could no longer contain the burbling volcanic emotions. Honestly? I completely and utterly lost my shit and sobbed.
That appointment permitted me to allow myself to connect to the cesspool of emotions, and then word vomit out all my feelings when the oncology liaison nurse asked: “so how are you really going?”.
Through the streaming tears, that oncology nurse somehow made sense of my babble. She checked my post-surgical wounds, even though that’s not her job. She quickly ascertained that I’m a bit of a control freak, and required information to improve my failing self-management of the anxiety that afternoon.
What felt like half a tissue box later and a discussion of my allergies (and there’s a list) I met with the oncologist. He listened. He smiled. He reassured. We talked biochemistry of the cancer pathology results. I got the sense that not many patients enter his rooms and can talk shop like a colleague.
We conducted a tour of the oncology ward so I could familiarise myself with staff, the protocols and the process. I had chosen the ‘cap cooling option’ during my chemotherapy treatment.
Imagine a cap with flowing water, connected to a refrigerant machine and your head freezing. Literally your scalp and wet hair are taken down to minus two degrees. To tolerate this you’re given a couple of pain relievers and a ‘relaxant’ and smothered in pre-warmed blankets.
Create a picture in your mind of a goofy dog emerging out of anaesthesia, doped to the hilt, snuggled in a blankie, arm cannulated, with drool dripping down my chin. Glamourous, nowhere close. Life-saving, yes. Well that was what I became once treatment started!
You think chemotherapy and your automatic response is bald, vomiting hot mess. Right? I am grateful that my treatment and side effects were different.
Fatigued? Of course but this wasn’t all the time. My treatment hit me three days after administration and I’d be down for two or three days then bounce back.
Neuropathy? (That’s pins and needles, numbness, even burning sensations in the extremities of fingers, hands, toes and feet). Still experiencing those symptoms four months down the track. WHilst I have exceptionally good pain medications, they leave me with a hangover. So I feel very grateful that my naturopath had some goodies in her toolbox to combat this.
Chemo brain? Say what? Of course. Delighted to report the IQ and memory recall are returning. So if you know me and see me down the street, tell me your name cause that filing cabinet is still a little jammed and my recall of face to the name is a bit wonky!
Proprioception? I know I can already hear you squealing “what does that mean?”. It is simply a fancy word which references our perception or awareness of the position and movement of the body. When you receive chemotherapy treatment the neural pathways can be affected.
You can walk like a drunk, trip over a piece of paper and slur your words a little. You may have trouble with balance or even holding things like a cup or phone.
Digestion? The discussion of monkey bum is always an entertaining one. No one wants to be asked how their bowel movements are! Gosh, I feel for the nurses! Since the adjuvant treatment does affect epithelial cell lining (mucosal membranes so everywhere from mouth to butt hole – charming isn’t it??!!) patients can experience symptoms of constipation and or diarrhoea. Either way, your butt gets red like the baboon at the zoo — hence the reference to monkey bum was born!
The extreme of this is swelling and splitting of other sensitive areas like inside the mouth, nose, vagina or anus. I used powdered glutamine in my daily smoothie to keep my pink bits happy. You can grab it over the counter at any chemist or bodybuilding shop as it’s marketed as a post-exercise supplement. Chemo definitely gives you a workout!
Hair? Society has this misperception that chemotherapy will automatically mean your hair falls out. And it does, in hand fulls. However, with the aid of scalp cooling, I kept a lot of hair on my head. That said, it’s still sparse (for me) and my head is cold so I wear turbans and caps to keep myself warm!
My eyebrows and eyelashes thinned out drastically but I never lost them completely. The peach fuzz hair on my face disappeared, as did the hair on my forearms and patches on my legs.
But guess which hairs returned first? The witchy poo rogue hair on my chinny chin chin was the first to return after the chemo rave party, and brought seventeen mates with him! Bastards! It’s like I’m growing a pubescent boys beard!!
It’s nuts how the body responds to being bombarded with poison!
Due to hair loss, because they are the most fragile and easily replaced cells of the body, you get nose bleeds and sniffly nose. This is the body’s natural response to flushing the exposed cells where hair normally captures foreign bodies.
Nails? Yep if you’re lucky you keep them as they tear easily. Others experience their nails lifting off, an extremely painful experience. Some experience fungal infections as the nail bed becomes exposed and their immune system is working overtime.
Pain? Chemotherapy targets white bone marrow so you can experience deeply seated bone pain. I found topical magnesium massaged into my legs enabled me to continue walking. On the bad days, I would also resort to low dose pain medication to take the edge off. On the really bad days, I befriended the couch and Netflix and tried to sleep it off knowing it would pass.
It’s vital to be able to listen to what your body is saying. Receiving chemo, or magic medicine as I now refer to it, doesn’t discriminate and affects everyone a little differently.
Fingerprints? I know how weird is this, but the fingerprint lines disappear during chemo. I definitely struggled turning pages of books, picking up objects and getting good grip on the steering wheel.
Sleep? Luckily, chemo pushes the hormonal balance out and you commence menopause symptoms. It’s a barrel of laughs being hot and sweaty one minute, then freezing cold the next. Interference with sleep due to such power surges and or pain is common. Reduction in sleep can lower one’s tolerance for being able to cope and reduce your resilience.
Mindset? When you combine pain, sleep deprivation, and fluctuating hormones, your emotional mindset is significantly challenged. Even the most positive Percy’s can be easily reduced to tears on a bad day. There are moments you can cry rivers, and the next nearly wet your pants laughing.
Sanity? For me, it was healthy to maintain daily walks and meditation. I journaled a lot.
Support? My support network was jam-packed with inspiring positive people who lift me up. They recognised the days when I was low and gave me lots of space to rest. These were the people that didn’t treat me differently. They just hugged and kissed me, sometimes laid on the bed with me. Others walked beside me. Some even helped me shower or brush my hair.
There was a common theme amongst my support posse. I maintained a private messenger group where I could update my gang once. I didn’t have to continue repeating news — good or bad. There was often dialogue. There were celebrations for the small wins, and expletives issued when the news was bad. Links were shared when the technical stuff got too difficult or tiring to explain.
In this space, there was only ever love expressed and received, and for that, I will be eternally grateful to this group.
This group of wonderful people never asked for the updates, for me that was the worst thing you could do. Why would you want me to relive and re-experience all the crap all over again?
The key thing I have been routinely asked is “how are you?”. There are times this drives me crazy because I am sick to death of repeating the same cancer story. I am sick to death of talking or even thinking about it. Why? Because I’m the one living and growing from this experience.
So next time you see a mate who’s undergoing chemotherapy, simply ask them “is today a good day?” and adjust your conversation and action accordingly. Ask them if it’s ok to hug them. Ask if they’d like a hand or foot massage. Book an exercise date with them. Ask how their skin is holding up and offer them some moo goo cream or liquid silica!
Do some research on their disease and treatment so that when you are talking you will understand and not ask unnecessary questions that force them to repeat difficult to digest news or information.
Ask your mate whether they would like to be accompanied to an appointment. Having a fresh face rather than your partner is a lovely distraction. It gives your family a break and some downtime and it gives the patient a new person to talk to.
Ask what sort of meal they want to be cooked. Don’t simply make the offer of a meal because most people will reject that. When I offer meals, I provide the recipient with a choice of meal A or B, because I know the value of sitting down to a meal without having wasted my precious energy to prepare it.
I take myself to and from oncology appointments, and the last thing I want to do after travelling a couple of hours each way is to cook a meal when I get home. So when someone offers to cook I thank the angels and say “yes please, that would be fabulous and such a big help”!
These days, I waltz into the oncology ward. I know everyone by name. The staff are like a second family. Some of the patients have become ‘magic juice’ mates. There is laughter amongst the shiny heads. I’m part of that banter now.
I see beyond the bald scalp. I see the beauty within those undergoing treatment. I see the compassion within the staff. I see life as a gift from my own eyes, and cancer has changed me. It’s changed me into a different person. One who values every second as a gift.
I have come to accept that the adjuvant treatments are life-saving on so many levels, they are my magic juice! The key to shifting my mindset was to confront my fears about the treatment itself and to hug the gift of cancer.
I talk openly about this chapter of my life because there is so much stigma associated with someone doing battle with the drug regime. Acceptance of the actual disease is a whole new story!