So, now cancer - sitting

So, in the end although I was booked to have the biopsy on the Tuesday after going for the hug, it was rescheduled by the provider and the location moved at the last minute to a much more expensive option at the very last minute. As a result the biopsy actually happened on the Wednesday.

MGC was happy to give me a lift and I was grateful because wheelchair accessible cabs in Brisbane have been entirely unreliable for me. I could not risk it. But the initial consequence of my acceptance of that offer was that I couldn’t take my electric wheelchair to the appointment as it couldn’t be folded or lifted into the back of the car that MGC now drives. So I was in a hired travellers wheelchair when I arrived at the appointment. I’m convinced that being lower and unable to self mobilise changed how I was perceived and the disability was reacted to. They couldn’t even see me “down there” (giggle- whoops) from behind Their glass enclosed Ivory tower (or do I mean reception desk?), when they initially asked MGC if they could help them.

I was low. I couldn’t move myself and the wheelchair was not suitable for self transfer. But I was there. That was the main thing.

Most of the staff, nursing reception wise were nice enough but had varying levels of disability shock. One nurse was amazing. Pretty standard stuff if draining to this point.

Here’s why we needed to talk about the biopsy

I told all the nurses, including The 4 that huddled into the room to awkwardly stare, (one of the 4 offered to help) at MGC transferring me on to the ultrasound table, that I wasn’t scared of needles (true), but that regardless of anything my left arm would spasm because of the Cerebral Palsy and that it wasn’t a reflection of nervousness. I made eye contact as much as a possible with all 5 of them. I suggested that They could help by holding the wrist of my left arm and providing resistance when I asked. They all expressed that they got it and would help. It would be fine. Then we waited for the Dr (V), whom The 4 had each told me was lovely (Hindsight: methinks thou dost protest too much).

He ambled in to the dim room approached my left side took my left hand told me his name, told me he would make my skin wet and I would feel a little scratch. I introduced myself, asked him if he meant iodine and local anaesthetic, and again explained that I have cerebral palsy. I’m feeling reasonably calm but that my arm will spasm with the needle and there isn’t much I can do about it. While I was saying that it actually looked like I ceased to exist except as a body. There was no recognition or acknowledgement of what I said.

Dr V then ultrasounded me a bit more, put iodine on my skin and gave me the local. He was going to do the procedure from my left side so the nurses couldn’t or didn’t help with my left arm as they assured me that they would, nor did they advocate for me . Dr V then complained that “she” wasn’t staying still, told me to relax, but when I was still spasming (wrist against his torso), he said very loudly “I’ll have to do it from the other side because “she” WON’’T (his word, his volume choice) stay still! I didn’t think there was point or wisdom in protesting, I noted that none of the nurses contradicted him or stood up for me, including the two nurses I had interacted with the most in there. So i (lower case intended) stayed quiet.

Dr V swapped sides and although i was advised by the initial amazing nurse and YouTube research that the Dr would talk to me throughout about what he was doing, it was the Ultrasound nurse or no-one that talked to me other than when i grunted from pain and They gave me more local and Dr V (who had been talking to the nurses, but never addressed me) said apparently to me, is that better? Instrument nurse kinda held my wrist but seemed to not hear my requests for tension. I’m pretty sure she thought it was reassurance not functional management I was after even though i told them otherwise .

Because I hadn’t been able to actually manage the spasm effectively throughout (no useful resistance provided) the click at the end of the biopsy that I knew was coming triggered an involuntary leg spasm as well as left arm which Dr V again complained about.

Anyway its done and as a result we know what we know.

By the end, he left and I was apparently looking pale. I think it was stress from being critiqued so hard despite trying to set it up and failing to be in my mind at that moment neither a good patient nor a good disabled person. The reception staff had recovered from their disability shock by the time I was back in front of them and spoke to and dealt with me well to get my money!

It wasn’t a complete disaster. But it was so much harder for non cancer reasons than it needed to be. Of the dozen or so people I met in that 2 hours only one was really good about the fact there was an actual human with a disability in front of her. Three had a moment or 3 and became adequate at inclusion and the rest of the cohort: who were all medical personnel were not good even with my best efforts. It was exhausting for me with all of them.

This is the medical hoopla I’m scared of. I have to continue to prepare for the worst every time I leave the house. This sort of effort will at least influence how how much fight I have in me. Especially since my pre existing condition is medical and these are medical people. At the end of the proceedings (ie after she had been told it was cerebral palsy multiple times), Instrument nurse – yes a nurse asked me how long I had had the palsy for.

I don’t want to be a doom and gloom blog. I have thoughts as to how to prepare oneself better and advise for practitioners that might see this. But I’ll do that another time.

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.