Introducing Melanoma Rollercoaster
We first met Imogen at the European Cancer Congress in Vienna in 2015. She has been blogging about melanoma since September 2013, and has become very active in the UK & European melanoma patient community.
We naturally wanted to get to know her more, so we asked her a few questions.
You can read the details below – and make sure you read through the end as Imogen had a special announcement for everyone!
I was diagnosed stage 2c Melanoma in June 2013. My primary melanoma was a mole on my back that was misdiagnosed / failed to be diagnosed several times by several medical professionals. I also had a second melanoma on my knee.
I had grown up in East Africa but don't remember ever burning as a child - but UV is accumulative as I have since learned so more than likely a mild burn as an adult tipped the balance but it would have been a matter of time.
I have 2 young children and desperately don't want them to grow up without a mother. So far I have been progression free for 2 years which is amazing and I am very fortunate that is the case.
Blogging to update friends and family
I started blogging in September 2013... I was having so many appointments and procedures and was having to update friends and family so often that I wasn't able to switch off from Melanoma and have any mental downtime. I also thought my cancer would progress very quickly and the treatment options that were around in 2013 had poor survival rates. So I started blogging partly to keep my nearest and dearest updated with "me" and also as a future record for my children to read after I died - so they would know what happened to mummy.
The background behind the blog’s name: “Melanoma rollercoaster”
Thank you - well it is quite simple - I love rollercoasters - twists, loops, speed, no control, fear, adrenaline etc....But then my experience with melanoma has been just the same so I linked the two - the same rollercoaster of emotions and fears and anxieties...followed by pauses like black holes.
Humourous (and not so) posts
I am very lucky having transferred to Oxford that the team there are so upbeat and make my experiences funny.
My favourite posts are either blog 13 or 15 purely from the humourous events of those days. Or more recently blog 79 which was from a recent CT scan and shows just how much Melanoma has been absorbed into my family’s life without the children even being aware of it.
It is really important to link with other patients
Sharing experiences and writing about my story is extremely important to me… When I was first diagnosed I only found 1 other blog from a patient in the UK and they hadn't posted very often because they were very ill (and has since died). I want to show people that whilst melanoma is horrendous and has changed my life completely, I am still living, and learning from melanoma every day. It is such a scary diagnosis to get (especially when you read the statistics online as I did) and my melanoma was deep, and fast growing. Therefore, I think it’s really important to link with other patients - and talk.
The patient blogosphere has everything
I ready quite a lot of patient blogs. Sadly there are many who have died that started writing blogs and that can be quite frightening to take on. Also lots of bloggers are angry - at their diagnosis or the pain or the system they are in and that comes across in their writing. I tend to avoid those blogs because I like to remain optimistic - even when I am blue.
This one is quite good; its writer is actually a doctor hence it is quite medical but worth reading and following on twitter.
Don’t start a blog unless you can commit time and energy
Actually, I have read some great blogs and some terrible ones. My suggestion is, don't start writing a blog unless you are prepared to commit time - and energy.
In addition, you open yourself up to public critique. Whilst I have had hundreds of wonderful emails from patients and carers that have been pleased to see and read my blog, and found it helpful or funny... I have also had a few crazy emails from people who are angry about their diagnosis and don’t like my attitude / honesty.
My message to other patients: first, do your research
Firstly, do your research: understand everything - the good and the bad (and the bad will scare you - but don’t be naive).
Be your own advocate: fight for your health - ask questions, ask for evidence / pathology reports etc.
Interact with your team: make yourself memorable and important to them.
Look after yourself: don't just expect your medical team to do everything - or sit back and wait for the inevitable. Get more active, oxygenate your cells, and eat right (junk food and processed food will not help your body fight cancer). As a matter of fact, I use the twitter hastag #fightcancerwithfood a lot - I really truly believe that whilst you can't get rid of melanoma once you have it that you can try to impact upon your outcome.
More about Imogen & her blog
Blog name and link: Melanoma Rollercoaster
Twitter handle: @MelanomaBlog
Imogen is a member of Melanoma Patient Network Europe (MPNE). It is a group of like-minded people (patients and carers) that are committed to improving treatment and care for melanoma patients across Europe.