By now, I had made it through the three day chemo with “Brick” and the next two days, which weren’t what I’d call fabulous. It felt something akin to slowly coming out of a really long hangover, complete with extra goodies such as nausea and diarrhoea. However by Day 6, life was great and I felt really well. I worked out that if it stayed like this, which it did for much of my experience, I would have 9 good days a cycle.

Having since spoken to a number of friends who have gone through various chemo treatments and cycles I now realise my oncologist had decided that because my bowel cancer so dramatically burst into my life (literally), any sneaky little suckers wanting to hide out in lymph nodes were being blitzkrieged. Hence the professional decision to follow a two week turn around cycle for my chemo treatments. I was all good with that. I now had 9 glorious days of wellness. Brilliant. How good was that!

What I didn’t count on though was how quickly this time was filled up with other medical things. A friend once said to me “you have so many appointments, it’s like a full time job” and honestly it was/is like that. Also Chemo Brain is real! I was realising just how many appointments and phone calls were involved with so many different people and that I was definitely more forgetful than previously. I was already bad with names and phone numbers, so to counter the extra fogginess I invested in a good diary which was a godsend. I am still very dependent on a good diary now going through the breast cancer treatment. I really, really recommend a diary for anyone going through chemo, or about to go through treatment of any sort, together with a fully charged mobile phone.

Anyway, I had been given a schedule by the Cancer Centre listing every date for my 12 chemo sessions. I was also given a schedule of when I had to go to the Cancer Centre to get the ‘PICC’ cleaned during my ‘good days’. There meant one ‘good day’ crossed off each cycle in the diary. Then there was the day before each chemo session where, like most people going through chemo, I needed to go to pathology for blood tests. I crossed those off in the diary as well. I also had started getting calls from the various specialist administrators. I had to regularly see the oncologist, the surgical specialist, the stoma nurse and the endocrinologist. Obviously these appointments needed to be during my ‘good days’ as well. Phew. Let’s just say my diary was filling up!

This was good. I was feeling organised. The diary dates were pencilled in up to March 2021 complete with the many, many names and phone numbers I needed (which were also in my phone as back-up). Take that Chemo Brain! I had a clear sense of what was to come and was even able to start thinking about maybe getting back home at some stage for a couple of days where there were little gaps in the schedule.

However just as I was feeling really on top of everything, in came another phone call. This time it was the Oncology Unit just reminding me that I needed a General Practitioner (GP) referral for the next appointment. Hold the bus! What? Having had everything organised for me by unknown little minions from the local health area since leaving hospital, the thought of needing a GP referral never entered my mind.

“Oh yes, you’ll need to have a GP referral for all your specialist appointments. Also you’ll need to refer to us, so we can refer you to the pathologist.”

“Can I use my GP from home?”

“No, you’ll need a GP from this Health Region otherwise it will be too complicated because it’s a different area and you are having long term treatment.”

Seriously! This particular little minion was not being helpful.

For people reading this not in Australia, it is usual practice here to be referred by a GP (General Practitioner) to see to a specialist here. As I understand it, any other type of referral is only valid for a short time, so I had essentially passed my ‘use by date’. I had just not factored this in with everything else that was going on.

OK so now I had a side quest! Find a local GP who was willing to take me on, on short notice, during COVID. Tricky, but I am nothing if not tenacious. A couple of my ‘good days’ were spent making many, many cold calls to many many medical centres. Again, I really do believe I am lucky because I finally got a call back from a medical centre within walking distance of my apartment. They had a doctor who was prepared to take me as a new patient and could I make an ‘in person’ appointment at 10am the next day. I didn’t need to put that appointment in the diary. (I will add here, just quietly, had I been in a rural area, I’m pretty sure it would have been a much different story.)

So next day, I trotted along to the medical centre and was COVID tested and filled in paperwork and met my new GP. She was lovely, if somewhat surprised that I seemed really well given my medical adventures to date. I think I thanked her way too many times as she started emailing off referrals for me. She also asked for my ‘usual’ GP’s details so she could liaise with them for my pre-cancer records and organised another appointment in two weeks to monitor my progress. Added that appointment to the diary!

I remember thinking “Damn. Only one ‘good day’ left before pathology and we start all over again”, but also thinking “Seriously, someone is looking out for me! How good was it finding a local GP and so close”. I was just sitting down at about 7 o’clock that night to send out the good old ‘everything’s fine’ messages and update a few people re the GP situation when I got an unexpected phone call. It was my GP from home who had only just received my information and had no idea of everything that I had been through. They were ringing to see if I needed anything or if there was anything they could do for me or my family.

That phone call sticks out as one of the more important moments in my adventure. After the call I may have shed a tear. This was not because I was sad, but because I felt relief. For the first time since the start of everything I’d been able to talk to someone in the medical profession who knew me. It was a bit of a lightbulb moment. I hadn’t realised that, up until then, at the risk of sounding like Blanche Dubois or a 2019 movie title, I had been relying on the kindness of strangers. Really lovely and caring medical people doing an amazing job, but strangers who’s connection to me was curing my diseases and who really had no connection to me as a person at all. In all honesty, because everyone was masked due to COVID, I never did see what some of my specialists, the cancer nurses or my new GP looked like in real life (except through photos which I may have Googled.) That phone call gave me support I didn’t know I needed. Now, I felt if I ever really began struggling medically on this journey, someone who knew me, my family and my whole medical history, had my back.

That phone call was almost as good as the diary!

(P.S. I believe patient relationships with their specialists, own doctors and other professional carers throughout the cancer journey plays an important role in terms of the healing process. I have actually found this to be even more relevant to my current treatment as I now have a breast care nurse as an additional support person. I would genuinely love to hear other peoples thoughts and comments about this side of their treatment journeys. Chemo Brain stories would be fabulous too!)