(Original title – The Rogue Bludger)

And again, I am one of the youngest in a sea of grey at a breast cancer event. I wonder what it is about these events that don’t attract younger women to them.

I attended the Plan C conference by the BCNA (Breast Cancer Network Australia for those of you in the USA), a massive behemoth of an organisation that is responsible for October being pink every year for Breast Cancer awareness. And you know what, we’re aware. Every time we see pink, we think of breast cancer. Great, your work is successful. The thing that shits me the most about breast cancer and BCNA is that they focus so much on early detection and prevention, and all of the luncheons are for “breast cancer survivors” – those women who have dodged the worst of breast cancer. Those women who walk around in October, shaking their little collection cups to encourage donations off the back of their “brush with mortality” and their stage 0 or stage 1 cancer that was cut out and then quickly blasted with a dose of radiotherapy. They get to wear “cancer dodger” as a badge of honour.

Can you tell I’m in a cynical mood tonight?

That’s fine. Raise awareness. Do your thing. But what shits me the most about all of this is that those of us who are Stage 4, which is terminal, which is incurable, which is metastatic, aren’t welcomed at some of the lunches, because we’re a reminder that cancer can kill. Hypocritical much? Raise awareness, but don’t scare the other ladies into thinking you can actually DIE FROM CANCER.

Ugh.

Anyway, so I’m at this conference, and I’m sitting up the back of the room, and all I can see is a sea of grey and poorly-maintained dyed hair. Seriously. I’d woken up feeling decidedly below-average, and I’d actually forgotten about going. So I rushed, and got in an uber, and somehow ended up getting there twenty minutes early. And realised that I was the youngest there by a solid handful of years.

The conference itself was OK. A psychologist spoke to us about self care and the impact of diagnosis on our mental health, which was a really interesting discussion. An exercise scientist spoke about the report that came out a few months ago linking exercise with cancer treatment improvement and debunked it, stating its recommendations were not appropriate for everyone and then showed us all research outcomes that actually supported HIIT (high intensity interval training) and a specific way of working muscles to improve medication uptake and increase blood flow through tumours, having lead a study in WA where he practises. A breast nurse spoke about her experiences dealing with metastatic patients, and I’m just going to focus on this bit for moment.

I have a great relationship with my breast care nurse. She is one of the most important people in my treatment team. Anything I need, I can call her or email her and she’ll get onto it. Sometimes there’s a delay, but she always comes through for me. She is just amazing. I was in two cancer groups – one for inflammatory breast cancer and one for advancer breast cancer – and the majority of people within these groups either hardly ever see their nurses, or never see their nurses. And this was reflected in the experiences of the women in the room as well. And I don’t understand how. They seem to expect the nurses to make the first call and keep up with the follow-up calls. The McGrath Foundation funds breast care nurses in hospitals around the country, but apparently these women are only dealing with early breast cancer (stages 0 – 3), and not advanced.

If mine had said to me “no, you’re advanced, I won’t talk to you anymore because it’s not my job”, I would have gone postal. She is so incredibly supportive and honest and caring. She was with me when I found out I was metastatic, simply because she’d found out I didn’t have anyone to go with me to the oncology appointment and she made time to come to it with me. She held my hand, she cried, she asked questions, she helped explain things to me. We keep in touch, we talk about cake we want to eat, we talk about cancer, we talk about nothing.

I don’t understand why people don’t speak up and ask why. Why won’t you talk to me? Why don’t you care?

It was at this point in the conference that the questions directed at the speakers began to get on my nerves. Because they weren’t questions, they were just rants about how shit breast care nurses are and why don’t they spend more time with us and why can’t I get through to one on the phone?

Why don’t you try speaking to your oncologist about it, and write a letter to the head of oncology, and the patient liaison officer if you’re so upset about it? If you want something to happen, the patient liaison officer is your port of call.

This conference got me thinking about support groups, because the two that I was part of had me feeling like I didn’t quite belong, because they were full of women who were just complaining about everything. “how will my perfectly healthy 35 year old daughter cope with me dying at some point in the next three years?” The same way you did when your parents died – you’ll be sad, and you’ll go on with life because that’s just what happens. And you know what, they’re 35 – if they’re so dependent on you for day-to-day adulting, that’s on them.

Cancer isn’t fair, and having to die from cancer isn’t fair, and leaving people behind isn’t fair. But unless you want to engage a suicide pact (do not actually do this), that’s the harsh reality of life. People die, people are left behind, and those people move on.

Something that I’ve realised is vital to keeping perspective is the use of groups to reach out to and just be a part of a group of individuals experiencing the same shit. And I didn’t get that with either of my groups. A single 25 to 40-year old dying of cancer doesn’t have the same support networks as a couple or a family does. A couple has a whole separate support system built in via their partner, as flimsy and shitty as it might be, it’s there. So something that I’m going work on is starting an online support group for younger terminal cancer patients. If anyone has suggestions, I’m all ears.

I think I’m done ranting for now.

Let’s have a brief update and see how many people actually read the whole thing.

I had my oncology appointment last week and was told that the second spot in my liver is also cancer, but it’s shrunk from 5mm to 3mm. So I have more cancer, but less cancer overall. As a friend said, my cancer exists in a state of quantum superposition. It’s not good news, but it’s less worse news.

I’ll spare you all the story of almost having a needle in my ass to lance a haemorrhoid. It’s better now.

Taking my victories small and often. This counts as one. Next rant will be soon. I have a lot to rant about lately.