It’s quite a unique situation being disabled & then getting a Breast Cancer diagnosis. It can be hard to find people who are in similar or the same predicament as your own. Whilst all general information & guidance should be available to you (providing it’s in a format that you can access), you’ll need to consider how your cancer treatment might interact with &/or impact on your other impairments.
If I could encourage you to do one thing, then it’s this: you arrange a conference call or an online meeting between your GP, disability-related consultants / professionals & your Breast Cancer team to discuss what you’re facing & to plan treatments accordingly.
Whilst being disabled & then being diagonised with any kind of cancer can be isolating & lonely, I found reaching out on social media really helps. Now I inderact regularly with a growing group of people who are disabled & living with, or beyond Breast Cancer. These people are a key part of my support network. They been a source of comfort & relief.
Here are my other top tips:
- Once your other underlying conditions have been factored into your treatment plan, you may want to check if your Breast Cancer team can offer any alternative ways of giving treatments (note: this may not always be possible). (eg. I had partial radiotherapy to help protect my lung).
- To make sure that your access requirements are met (note: in the UK, making reasonable adjustments is a requirement under the Equality Act), ask if there is a staff member in PALS (Patient Advice & Liaison Service) that can act as a liaison person between you & the Breast Cancer team (I had one & one of the things she did was to came to any appointments that involved needles because I have a needle phobia).
- Ask to meet the teams that are treating you, with your PALS staff member if required, so that you can discuss your access requirements & any concerns that you might have.
- Ask for additional time in consultations & during treatments so that your access requirements can be met (eg. it might take you longer to get on & off the radiotherapy table, like me).
- If you need to, ask for any printed or digital information to be available in a format that is accessible for you (note: in the UK, this is a reasonable adjustment under the Equality Act).
- If you need assistance with personal care, tell your Breast Cancer team that your Personal Assistant or whoever cares for you, stays in hospital with you. (Note: in the UK, there was provision made during the pandemic that disabled people who needed this kind of assistance could be accompanied whilst undergoing treatment. My partner had a bed next to me & we were in a side room).
- Ask your Breast Cancer nurse to liaise with Adult Social Services over any additional access needs / medical conditions that you might acquire as a result of cancer treatment. Changing situations may mean that you need more or different equipment, a care package or adjustments to your existing care package (eg. my mobility has got worse since taking Letrozole so one of the new pieces of equipment that I have includes a walking frame to support my transfers in & out of bed).
The Musings of Spu 