When I started to do this blog I only ever really did it to tell my immediate family & friends about the various medical Melanoma related things that were happening & changing on a daily or weekly basis.
I was living a nightmare. Every day things happened. Things that were out of my control….and I was having to “re-live” each horrid day over the phone every night – recounting each brutal minute to several family members and friends.
The worst bit was not the fact that I was having to tell them because I was going through this horrid experience….but more the fact that I was finding & hearing myself adjusting what I was saying in order to either soften the blows, or make it easier to hear…..and I knew I shouldn’t do that. No matter how long my journey was going to be I needed it to be an honest one.
In addition I had found very little online at the time to help support and guide me – there were no blogs in the UK from other people with Melanoma, and how could other patients in this country relate to a US patient who has totally different Medical options, and choices available to them……perhaps writing down what I was going through might help others like me when they first got diagnosed.
I didn’t originally think writing would be as beneficial for me as it has become – like a personal therapist. Writing, rewriting, changing, deleting….part of my “new way” to work things through, a way to process the uncertainty and anger…a release.
I hear many other Melanoma patients talking about their fears and I sort of sat back and realised that I don’t really do that as much anymore……I try to make my blog funny so you keep reading it….I try to let you see how much this has taken over my world & my life but I never really share just how unsettled I have become. I don’t really allow myself that time….to decide if I am having a good or bad day – I whiz around in my headless chicken world and I work & thank my lucky stars that I am currently stable (skin wise anyway) and I trundle along in my quest to make a difference.
So when I saw a charity called Mind & Skin who were in the process of launching & were specifically trying to get people to talk about how a diagnosis with something like Melanoma can affect your state of mind, I thought it might be good for me to look deeper at how I felt now about my skin. I actually wrote the piece for them about a month ago when I was feeling somewhat frazzled and anxious so I am quite pleased to read it through again and not think I was totally off my rocker!
http://mindandskin.co.uk/your-experiences-imogen-malignant-melanoma/
Getting diagnosed with Melanoma is quite unlike many other cancer diagnosis…because once you get passed the immediate rush and panic…the removal, surgery and thunderbolt… you then have to readjust.
If you are like me…you have this new existence in limbo land…..nothing can take this away…..It may never happen…but the odds suggest it will. And where is it going to strike…..should I prepare?
I have discovered some things about myself in this journey so far…..firstly I seem to quite like writing…..and also I am profoundly interested in all things Medical, this is probably because in order to understand how complex Melanoma & Melanoma treatments are you need to practically swallow medical journals & become that uber nerd at the party that starts waffling on about the 8 different names given for the same drug, or what the point of a randomized trial is, or how genetics, immunotherapy treatments and research are the key to Melanoma.
*confession alert* I have become a closet geek & I have actually read every edition of Pharma Times since I contributed to an article about Melanoma for them back in May this year. (PDF at the bottom for those that didn’t see it in May)
There is something quite exciting about seeing your words in a national publication….a respected publication that is read by the very people that I admire…the people who treat me…the people that potentially hold the power to cure me!
That Pharma Times actually allowed me to contribute again is a huge honor.
This time the subject was not a subject I was wholly sure of at first……Care Data Link to article….they wanted a patients perspective…what did I as a patient think of the controversial system? An idea that starts off with the right moral framework….but somehow….inevitably gets lost…so lost that the public that should support the idea lose faith…and worse become angered at the money and time that has been invested into a project that they can’t trust.
Is it possible for our medical data to be shared and used for research and our benefit on a national level without greed and corruption taking a slice of the pie?
As a patient diagnosed with a disease with no current cure…a dormant monster lurking in my cells…I would welcome anything that could help researchers…help the people that care for me to care for me better.
If only the system and operators were as trustworthy in reality as they are in my heart…..
Article Link : http://edition.pagesuite-professional.co.uk/launch.aspx?pbid=93f21048-0999-4504-a77a-0eb1a06cd2cf
May Article on Melanoma :