When i was first diagnosed, i really didn’t know where to turn for support. All i had was a leaflet containing the phone number for Mcmillan (who are great, i might add). Due to the dire prognosis of Cholangiocarcinoma and the depressing “facts” and statistics i had come across, i felt even more alone and scared. What i was desperate to find, were stories and journeys of those who were facing the same diagnosis as well as a search for survivors (they are out there!) and how they had got to the ultimate goal.
I used Google to search for blogs but only came across one and unfortunately it was old and limited in content. So i decided social media was probably my best bet. For someone who has used Facebook for many years, i was surprised at how clueless i was when looking for support.
Eventually, i logged onto Instagram and in the search button, tentativley typed “Bile Duct Cancer” and “Cholagiocarcinoma”. Under “tags” i found lots of random photos from various people and organisations.
*Note: You will need to set up an account to view content on here.
As i was scrolling through some of the photos and posts, i saw one of a young lady with a big smile on her face and had to find out more about her. Like many cancer patients, she had used social media to document her journey, the ups and the downs but i was blown away at her positive attitude and the pure joy she found in everyday life. After commenting on one of her photos, explaining i had not long received my diagnosis and how happy i was to read how she was winning her battle with the disease, we began messaging and i cannot tell you the effect she had on me as someone further down the line.
She reached out to me, told me her full story and advised me on all manner of things, some of which hadn’t even occured to me right then. Through her initial support and guidance, i was able to research cancer (and boy did i do the research….it became a full time job!) and look into all areas of helping myself.
Through her support, i learnt that this was so much more than simply having chemotherapy or surgery. I had to do my part too and that was through nutrition, exercise, meditation and more….posts to come for all of these!
I had always been determined to beat this and was never going to just accept what i was told by doctors and she saw this determination (something she clearly by the bucketload) and her messages could not have been more encouraging or supportive, giving me the confidence to believe in myself, my abilities and my strength.
I have never met her (she is over the other side of the pond) but i absolutely consider her a dear friend…..and what’s more…..she has BEATEN cancer!!
Now, this is where Facebook really did help me. No longer using it to post photos of the kids or holidays, i found it an invaluable tool for connecting with others who were going through the same. Of course, there are some heartbreaking stories of loved ones who have passed and i never gets any easier to read.
There are though, some amazing groups you can join. I have listed these below. Some are purely for those diagnosed with Cholangiocarcinoma but i’ve also included groups that i have found along my journey so far as a result of my constant research into what i can do to help myself. These include a lot in regards to how nutrition can help and why as well as inspirational pages from people who have beaten their own cancer.
Nearly all of these have been by healing their bodies the natural way and there are some incredible stories on these which will give you so much hope and you will be amazed at what our bodies are capable of once we start truly looking after them.
- Chris Beat Cancer
- Cholangiocarcinoma Support Group
- Healing Cancer Naturally
- Gallbladder and Bile Duct Cancer Support Group
- Jane McLelland Off Label Drugs for Cancer
- Bile Duct – Cholangiocarcinoma – Cancer CCA
Those are just a few of what i follow but as you find out more and connect with others (if you wish to) you will find topics you can relate to or think may help in your journey. For example, although a vegetarian for over 30 years, i decided to go vegan after learning how dairy can actually feed this type of cancer, so i found some decent vegan based pages to join for inspiration and ideas.
I can honestly say that through these, and many more, pages/groups, my knowledge has grown no end and as a result, i no longer feel like i’m just exsisting, waiting for the inevitable to happen. I am in control way more than i ever thought was possible.
THIS is when social media does good