Notes from diagnosis to staging.
Friday 8 February 2019 — day of diagnosis
What I know about anal cancer so far: (Please note this was written on the day that I was diagnosed. I now know a bit more.)
· It’s possibly one of the most unglamorous of all cancers, even if Farrah Fawcett also had it. (Spoiler: she died).
· It’s a pain in the ass, literally. (Worst joke/pun ever)
· It’s relatively rare (lucky me I’m so special)
· It’s caused by smoking
· Anal sex
· It responds statistically well to radiation and chemo with promising 85% >5 years cure and survival rates.
· Surgery is a last resort, as this results in permanent colostomy bag (no thanks)
· Can spread quite easily from mothership to other organs.
· Desirable verdict: Stage 1–2. (Stage 4 has less optimistic %)
· Average age of AC patients: 60. I’m 38 (again so special)
The aim for this book of lined, blank pages is to write down everything, to get all thoughts and emotions onto paper and out of my head, to gain perspective and find calm, and to get stronger. The goal and focus is to get healthy and live. Today is Friday. Last day of smoking. Ever. About time and unfortunately a little too late. Interesting what we are able to inflict on ourselves with our heads buried in the sand. Interesting and horrifying. All the should-have-dones are obsolete. It’s happened. The Big C. Fucking cancer. It’s real (surreal). How long has it been there? How bad is it?
I’m about to embark on a journey. One with a whole new vocabulary. Squamous Cell Carcinoma. External beam radiation. Mytomycin. AC. 5-FU. Abbreviations that now apply to me. Some emotions: Anger at myself for allowing this to happen. Guilt and shame. Embarrassment. Fear. Fear that it’s worse than… like stage 4 kind of thing. Spreading. Terminal. Fear of running out of time. The scan will show where I’m at. I’ll know in 7–10 days. So I wait. And meanwhile my body rots. Sadness. But also hope. Maybe it’s not so bad. Stage 1–2. Fixable with chemo & radiation. Either way, will need treatment. Worried. About telling people. My son. My mum. Work. I don’t want my life to change too drastically. Would like to go on working. Don’t want people to treat me differently. Don’t like the idea of pity. This is 100% self-inflicted. And so I’ll put 100% into healing. To being as fit and strong and healthy as possible, physically and mentally, before, during, and after treatment. Excellent cure and survival rate, apparently.
I feel so heavy. A bit lost, maybe overwhelmed. Not sure how to deal with this. I also feel sorry for myself. Am I allowed to? Entering some dark places or maybe skirting them for now. But they’re there. Not a lot of self-love in there. How to avoid these… feelings of this is what I deserve? Without going crazy. Or getting depressed? A strategy is what I need. A plan. A way to be in each moment. Feeling sorry for myself is not a good strategy.
What would help is knowing the score and the schedule. Once I have that info I can map it out, work out the logistics. A timeline of recovery. And then in July we can go on a much needed holiday. Small voice says, but what if we can’t? I think it’s probably important to silence this small voice. Or change it. To a positive voice. Believe that you can heal. That you deserve to heal and live for another 50–60 years. I am loved. I know I am. I don’t always feel like I deserve to be. Anyway, I’ll work on it. Gratitude and small wins.
So let’s see. If MRI scan is on Wednesday, which it is, CT on Thursday, and the consultation follows a week later-ish, then treatment might commence the following week and go for 6 weeks. I was reading about radiation and chemo treatment for AC and found a thing that said: day 1–4 continual, and day 29–32 + 22 in between. Not sure what that means at all. Quite a long time, I’d say, most of March, some of April. Maybe best to postpone road trip with the girls. But wait until after consultation. Because if we can still go, I would very much like to. It would be good for me.
Saturday 16 February 2019 — a week later, waiting for results from MRI and CT scan
So, it’s hot. Dry and scorching. Bright. I don’t feel so good. In my body. In my head. Feel detached from reality but quite attached to my emotions, most of them some shade of fear, sadness or self-pity, or a combination. Nervous, jittery. Not on solid ground. It’s quite draining. And then this mystery shoulder/neck pain that arrived out of the blue this morning. WTF? And so, and so. I’ll try and write it down. I don’t think I can articulate my emotions verbally — it comes out as a whispered “I’m scared”. Not helpful. But maybe writing will help. It will. Always does.
Still thinking about how to tell people. Who needs to know? Is it something you announce? Like an engagement or pregnancy? Cute picture of my butt “Hey, guess what!”
Can you just not tell people? But your friends would want to know, in case they’re able to help in some way. I would want to know. There’s no news yet anyway. No real news, I mean. I’m still queuing for the rollercoaster without knowing what kind of ride I’m about to get on.
Little steps. Some gratitude. Towards modern medicine and the wonderful doctors and nurses ready to help me. I need to commit to the health. I have. I stopped smoking. One week now. Happy to be a non-smoker, a bit of a wreck otherwise. So, commit to mental health: bettering of, strengthening of. Next week you’ll either get some devastating news or some okay/great better news. Either scenario you need to be able to deal with it. You have a son who you need to be strong for. Falling apart is not an option. And neither is death, not yet. I have so much I want to see and do and experience. Surely it’s not my time to go yet. Will make a list of everything. It will help. Will be my why.
This feeling that time is ticking away as the cancer grows in me. Sometimes it overwhelms me, panic. Must remember to be positive. Calm and patient. The doctors and nurses are doing what they can. Unfortunately cancer doesn’t take weekends off… But with nutrition I can help my body. With writing and meditation I can help my mind. I am not helpless, there are solutions. A sliver of control. Maybe more! And I will need my wits about me for whatever changes are to come. Big changes. But I can do it. Only option is to fight. Can’t run from this one. So why not make it a good fight? Right?
Sunday 17 February 2019
Good morning. So strange waking up and it’s still there. It won’t just go away by itself…
No snoozing today. Was kind of awake anyway, sore neck and shoulder. Not sure how to make better. Maybe a walk. Yes, probably. Good old Mauao. The evening sky was so beautiful last night. The heat had left the day, a nice balmy breeze. Anyway. Today is Sunday. Working with D today. Will try not to cry at work. I regret telling her over text but not sure I could have managed it face to face.
Some difficult phone conversations last night. May have been the hardest thing I’ve had to do, to tell my mum I have cancer. Not sure how I even got the words out. I wish she wasn’t so far away. 17,951km, as the crow flies.
H is great. So calm and rational. Was good to tell her. I worry about telling my boy. I watched him wicket keep at Mackville yesterday and he has so much spring and bounce in his step. I would hate to be the one to dilute his happiness and confidence. He’ll be 13 in a few months.
Please let there be time.
My Bic 0.8 scratches on as the sky lightens. I love being up at this time of day, before the birds even. It’s very still and quiet. Maybe I can borrow some.
These fluffy little seedpods keep following me around. You know the ones. It made me think how we are like seeds, us humans, how the wind scatters us and we end up somewhere where we grow roots, maybe for a while, maybe forever. Forever doesn’t seem so epically long anymore. Never and ever, all putting their hands up.
Tuesday 19 February 2019 — still waiting for scan results
Please let that phone call come through today. An appointment. Dates. A plan. Action! I want it out of my body. I want life as it is now but without the cancer: Ride bike to work, work at cool gallery with a great bunch of people, ride home, see my beautiful boy, go for a walk in the hills, have a nutritious meal, talk about our day, read a book, plan a trip, connect with friends, write, travel sometimes, make some art. That’s the life I have and it’s a really great life. I’m so fucking lucky. Yet I wasn’t content. Like everyone, complaining. Not all the time but enough. All the stupid little things. Taking things for granted. Moments. Not quite fully present. But I can change this. Nothing like a bit of potential death to put things into sharp relief. But I feel like there’s still a lot to learn. I wish for calm and clarity to deal with everything. Meditation every day will help. Morning and evening would be good. Okay.
Wednesday 20 February 2019–12 days since diagnosis
Going to see my GP today. Surely she has the results and will be able to tell me. It’s all very vague and confusing. But my bike ride into work yesterday was amazing. I almost cry from the beauty. Wind in the trees. The wild fennel. I told B yesterday. I gather strength from my army of beautiful friends who love me. As they line up beside me, ready to fight, with love as their weapon. The meditation is helping too. I feel calmer, definitely.
It’s crazy how easy it was to stop smoking in the end. I guess it helps having a strong motivator. The Easyway book helped too. Not to mope about it. To rejoice. I see smokers now and I worry for them. They all have their heads in the sand. Smoking is very dangerous. And just stupid. Anyway. I am free now. The past is done. I can change my actions. I can choose life, I hope. I hope it’s not too late.
Being a bit melodramatic. A pity party for one, jeez. I guess that’s what fear tastes like.
It’s completely still outside. No wind to stir the leaves of the plum tree. It hasn’t rained for ages. A month? Everything is very dry, the grass is yellow like straw. Brittle. Will be beautiful when the rain comes. I will go outside and smell the earth soaking up the water. I want to present for all of it. Awake. Alive.
Thursday 21 February 2019
A wonderful anti-climax!
So many emotions these past days. Fear has given way to relief and gratitude, to be granted time and life.
I want to extinguish the cancer. Kick it in the balls. Zap the motherfucker! I went and bought a load of vegetables and kale and blueberries. Reiki in an hour. Why not? If it helps me find the clarity, calm, focus, strength and courage I need as I enter my little storm. Patience to slow down and be. Clarity to formulate what I want and to see things as they are. Courage to be brave and honest on this journey.
I am brave. I am strong. I can change. I can heal.
Thank you for reading. You can find the full cancer experience article here, if you feel like reading a bit more.