Everyone has a unique experience

NIKI, BREAST CANCER SURVIVOR: My name’s Niki, I’m 26 years old now. I was born hard of hearing. So initially when I say something like that they automatically think that I’m deaf completely or because I lip-read that I can hear the person.

ANGELA, BREAST CANCER SURVIVOR: Hi I’m Angela and I was 42 when I was diagnosed and I was a bit shocked.

SARA, BREAST CANCER SURVIVOR: My name’s Sara Glance and I was diagnosed with cancer a year ago and I’ve just finished all my treatments. I’ve had Polio as a child, I’ve had other illnesses along the way in my life and this was just another one. I’m at the end of my journey and opening a new page of my life.

DR VISHAL BOOLELL, MEDICAL ONCOLOGIST: With regards to how patients go through their journey when they start with a cancer diagnosis. It’s a very emotional situation and it’s about bringing it back to the patient, so no two people with the same disability will have the same experience as well.

Communication is important

SARA: Health Professionals have to listen to the patient. They’re the ones going through this journey and the person going through the journey needs to ask the questions.

ALISON, BREAST CARE NURSE: Treating someone for breast cancer can be complex, everybody reacts a little differently to treatments. With someone who has a disability perhaps the complexities are even more so, so it’s really important that they feel confident in their treating team to be able to communicate how they’re getting on, keeping that communication open is crucial to how they’re going to manage treatment and treatment can be altered depend on what’s going on with them. A couple of years ago we had a woman who had more complex needs. She had an acquire brain injury following a car accident. This woman had some difficulties with cognition and with communicating with us. So we were heavily reliant on family to keep us informed and to ensure that the patient was also well informed.

Treat the whole person, not just the breast cancer

ANGELA: Yeah the treatment has affected my disability. I’ve got gout in an ankle, I’ve got peripheral neuropathy through the bottom of the legs, I’ve got arthritis in the back. It ruled out radiation because I couldn’t lift my left arm.

NIKI: I lip-read a lot so I like to look at people in the face while I’m talking to them and having a conversation with them. It’s very difficult because when you’re laying down for the machine and they’re doing the measurements, every time I have to lift my head up to see what they were saying, when the radiotherapist would talk to me, I’d get told to put my head back down which made things really really difficult and frustrating.

SARA: The disabilities impacted my treatment by lowering the dosage of the medications that I’ve had to have in the first 3 months of treatment, again in the second 3 months.

ALISON: Some of the drugs made Sara feel unwell and so just mobilising around her house, all of those sorts of things probably became more of a challenge. The fatigue associated with the treatment also impacted on her, so she was very upfront about telling us what her needs were.

Information and support is available

ALISON: BCNA have great resources. In the case of the woman with the acquired brain injury we used the new accessible resources. Things like sadness, depression, and bone health and so on have been beneficial as well.

Living well after breast cancer

DR BOOLELL: Survivorship in cancer is really a hot topic, so we’ve gone from a time when breast cancers, the outcomes weren’t that great to a time now where we have a lot of treatment options where we can manage breast cancers aggressively and we can get on top of it most of the time. So survivorship is now the issue that we have to deal with, of coping with side effects. From post-chemotherapy, side effects following being on endocrine tablets, and I think the added issues of disability, it will make life a little bit harder and we just have to be receptive to that.

ANGELA: Some of the advice that I would offer would be to be strong, to drive it.

SARA: My advice to other people going through this journey is to know your disability, to understand your disability, make your disability known to the health professionals, to your carers even. Read your body, understand what you really know about yourself, keep a diary, take someone with you to appointments whether you need help or it’s not about the help, it’s about an extra pair of ears because it’s overwhelming and you have to take it all in.

NIKI: I just feel like it’s really important to make sure that I’m not going to sugar coat it, like this is what I’m going through. I’m in a lot of pain and I’m going to cry about it and it’s ok. You know, the next day I’ll feel really empowered and say you know what, I’m going to get through today. I think it’s really important for people to start reaching out to other people, just joining a class to do something, you know whether it be art or meditation or anything because you’re bound to meet new people. I think if you ever feel like you’re alone, you know you’ve just got to remember that you’re not.