Living with autism and breast cancer: Suzy's story

I'm doing okay. My actual cancer diagnosis has never been a worry for me, I've never cried or gotten angry. Never broke down. Instead I accepted it and did whatever I had control over which was recommended treatment by my oncology team. I think that attitude comes from being a Buddhist, and if we have no control over something we move forward without regret.

I was diagnosed in Feb 2023 with a rare ICC Stage 1 – plus  a Stage 2 DCIS.  I was on Letrozole but after 12 months, and despite being on a very strict low calorie diet I put on 20 kgs, plus had lots of joint and muscle pain. My medical oncologist changed me to Anastrozole. I'm still on the restrictive diet, but after the first twelve months, it's becoming increasingly hard to lose weight – lucky if I lose a gram a month. It's damn frustrating.

Now I have high cholesterol, my GP thinks it's probably from the medication. The muscle and joint pain, especially in my hands, is bad, but I take Osteo-Panadol daily which gives a lot of relief. I see my medical oncologist in June, so will discuss things with him. I still have 2.5 years of aromatase inhibitors to take. I also get exhausted easily – worse some days than others. Walking from one room to another at times is debilitating, yet other days I can do a little housework without the fatigue. My radiologist oncologist thinks it's a side effect from the radiotherapy which may or may not eventually go away.

Because of my autism I'm actually a recluse. I have great difficulty in seeing/speaking to people, and get extremely stressed as soon as I walk out the door. I live alone and...

This is hard to say but I get very lonely without human contact, but it's a catch 22 situation. I force myself to go to the chemist once a month for my scripts, but also to face people...rotfl. My GP does tele consultations, so I rarely have to actually see him. I see my surgeon yearly for all my tests and scans, and my medical oncologist yearly – 6 months between the two. No longer have to see my radiologist oncologist.

Thankfully, I'm an author so can work from home. My publisher is in Canada, so I don't have to worry about seeing them!