Doing lifelong disability and cancer as well as I can

So now cancer

A note to those directed here by the author. It is my express wish and intent to maintain my anonymity. If you know me contact me directly if you need to. Please don’t ask me who so and so is. I won’t give details I’m not prepared  to share. I will not blog immediately after I have news. My specifics don’t matter. This will be a resource with memoir elements not the reverse.

Two weeks ago yesterday I was informed that I have a cancerous lump in my right breast.

I had gone to see my previous doctor in Brisbane, at the tail end of a business trip, rather than face a stranger at my new doctor’s practice in Sydney (my new-to-me Sydney GP inconveniently, for me at least, had just started three weeks leave).

If I’m going to be honest, I had noticed a difference when doing my very imperfect breast exams for a couple or a few months. especially top down. But no actual bumps per se. I put it down to aging, hormones etc. CG admitted to seeing changes in the nipple over the previous 6 weeks ish. I knew that to be a red flag, so made the call

As I parked my wheelchair I was simultaneously anxious to have Dr A smile calmly telling me my body was just changing (again), and confident that she would do just that.

I was wrong. Thinking back on it now, Dr A didn’t seem to need much time feeling the breast before she took out the referral for the imaging place and told me to get it done ASAP. Like many busy women, I have a tendency to put off things that feel unimportant to the day’s activities. She put the referral straight into my hand and wouldn't let me bury it in my handbag. We had a discussion about staying put in Brisbane because Dr A wanted me to go a clinic that could do the biopsy at the same time. In the end I agreed to stay till after the scan and mammogram, because both the good doctor and I knew Brisbane healthcare better than the facilities where I am now in Sydney.

The ultrasound and mammogram happened on the Tuesday morning. The clinic couldn’t do the biopsy that day, so it was a case of waiting for the phone to ring – all clear meant fly home as soon as feasible to unpack and repack and visit CG as already planned. Call for an appointment for a biopsy or a call from Dr A herself meant uh-oh. By the Wednesday afternoon I have abandoned the idea of flying home first and rebooked to go from Brisbane on two planes to CG on the Thursday.

The phone rang. It was the clinic. A woman who sounded way too bubbly for the job she was doing rang to book in a biopsy. which instantly signalled to me that oh crap, there is a there there. I agreed to go the following day even though I would have to move my travel plans, and rang off. But I waited to cancel. Disbelief maybe?

Ten minutes later Dr A rang. Once I told her that the clinic had just rung to book the biopsy, she said yes its cancer. We discussed the flight conflict and the visit to CG. She was ok with me doing the visit for the sake of a hug. Another clue it was serious. Highly suspicious was the phrase They used on the report which Dr A sent me. I had the biopsy. The biopsy came back a week ago tomorrow: invasive stage II or stage III cancer with lymph node involvement. I was told the pathology looks concerning from people who would know and aren’t known for hyperbole. I have read it.

Both my GPs are suggesting it will need the book thrown at it. I see the surgeon on Tuesday, next first step on a journey of unknown duration or indeed destination. And I am already exhausted by the prospect of medical hoopla, and by some of the medical hoopla that has already occurred since the first appointment.

Having cancer already sucks. Having cancer with a pre-existing mobility issue that is independent of but will inevitably interplay with the testing and treatment of the cancer already feels harder. With the medical profession a lot of those folks, even those with the best of intention don’t understand disability generally and mine in particular. How can they? But they often don’t know what they don’t know but what would be good for them to know. Allowing for that dance is tiring.

When I first heard cancer I googled: wheelchair and cancer, disability and cancer, as well as Cerebral Palsy and cancer. There wasn’t much for the end user on the interplay between the two.

This blog is a small effort to try and help the next person who might with shaky hand google for those answers. If I stay consistent enough in the writing I’m sort out a domain etc.