Young Survivors Week day 4: Be an advocate
Hi everyone, I hope you're not all feeling too overwhelmed by all the posts lately. Although I'm very worried I'm making a nuisance of myself, I'm finding they are really inspiring a lot of ideas for me too. Sometimes it's a real effort to find the words, but they are just pouring out at the moment!
Once you get sick, you hear a lot about 'being your own advocate'.
I feel like I entered into the world of cancer not even understanding what that meant. Soon I came to understand it as having an expert knowledge of your condition, and telling your team what to do instead of them telling you. Which is difficult to do and makes you a difficult person to deal with.
Now I understand it better. It's important to ask questions. You may have to ask to have things explained to you. It's important that your team knows and understands your priorities and values. It's important that you are satisfied with your team, and if you're not, you take action. It's a good to know the names of all the drugs you are taking, the potential side effects, and what to do about them. You should make sure your team are all communicating appropriately and being kept in the loop regarding your treatments and results. It's good to not just sit back and let everyone else do the work. Of course when you're unwell, sometimes you can't do anything for yourself, but when you do get the opportunity, it is really good to take action. You may not be personally discovering a cure, but even the smallest actions can be a big help.
Up until this morning, I've often felt like I'm failing abysmally at 'being my advocate'. I consider myself 'easy going' and unless I keep myself in check I can overthink other peoples feelings to the point where I'm afraid to do or say anything in case of upsetting or offending someone. I still felt one needs to be assertive to be an advocate.
But this morning, when I met with my Oncologist I started a conversation with her that changed my mind. This morning - I tried to apologise to her.
See here is the thing. She is very highly qualified. She is an expert in her field. She has an amazing reputation, nearly everyone on my team has heard of her, and everyone who has praises her work.
And yet, nearly every single time we meet, I say to her (among other things) things that start with phrases like 'I read this article on facebook...' or 'My friends uncles mate took this supplement...'.
And it just occurred to me this week - that's kind of insulting, right? She is the person most qualified to keep me alive, and here I am telling her about hearsay and social media. (Facebook articles... farticles?)
But she wouldn't have it at all. She told me I am actually doing exactly what I should be in my situation.
And after that it struck me - I am successfully being my own advocate.
After that I could see all the other pieces fall in to place: I have a great team - I am highly satisfied with everyone involved. I trust them all, and feel comfortable talking to them.
As I'm writing this, I went to amend 'team' to 'medical team', but actually, my 'team' can include EVERYONE around me. My friends, family and colleagues are having a positive impact on me too.
Well done you! Thank you for being awesome.
Bowel Cancer Australia says:
Be an advocate for your own health, and feel empowered to make your own choices about your health and wellbeing.
While the disease is more common in people over 50, you’re never too young to have bowel cancer, so regardless of age don’t be afraid to discuss your symptoms or concerns with a health professional. If you have a family history of the disease you also need to talk to your GP. Don’t be afraid to ask for a second opinion.
For additional support, our trained staff are here to answer your questions at any stage: from prevention and screening; to diagnosis and treatment; to general support. Contact our Bowel Care Nurses on 1800 555 494 or visit [link].
Find out more about becoming a #Never2Young Champion, sharing your Bowel Cancer Story and joining Bowel Cancer Australia’s Peer-to-Peer Support Network.
Phew, you made it to the end! Have a flower photo. :)
This is Fabulous Fliss! Keep them coming, I am really enjoying reading them and they have great messages - do not apologize for informing young people in what they need to know. You might be doing someone ou there a massive favour!ReplyDelete
Thank you Kellie! Really lovely feedback :) xxxDelete
Such great information for those of us who don't have your experience.ReplyDelete
Thank you! :)Delete