A voice for those affected by womb cancer21 May 2016
She maintains 3 blogs – and is passionate about offering support to women with womb cancer. It should come as no surprise that she recommends blogging as a cathartic tool for patients.
We recently interviewed “The Hippy Hen” about her experiences and her blogs - let’s find out more about her.
Tell us a bit more about yourself and, if you'd like, about your condition
I live on a small island off west coast of Scotland called Isle of Bute. We moved here almost 14 years ago and both myself and my husband are originally from the midlands. I love living here; always wanted to live by the sea since I was little. I was diagnosed with womb cancer on 23rd Dec 2009, aged 46. It came as a complete shock. I had a total hysterectomy followed by chemotherapy and then external pelvic radiotherapy. Sadly, I have been left with several long term health conditions since the treatment ended so my quality of life is not too good.
I run Womb Cancer Support UK (WCSUK), which is an online-based support and awareness organisation. Womb cancer is the most common gynaecological cancer in UK yet there is very little awareness. I had never heard of it before I was diagnosed and neither had many of the women who have come to WCSUK for support. As well as offering support to women across the UK we also do as much as we can to raise awareness as there is no national awareness campaign out there. I may run it by myself and we may only be a small not for profit organisation but I have a lot of good ladies with me and we have a loud voice and a lot of commitment to the cause.
When did you start blogging? Do you remember why? What are your goals by doing this?
I started blogging at the beginning of 2010 just after I started my treatment for womb cancer. I was fundraising for Macmillan Cancer Support by making and selling handmade jewellery and cards and wanted a way to keep in contact with the people who were buying from me and to also update everyone on how the fundraising was going.
I actually now do 3 blogs – The Hippy Hen which is just my general blog; buteartism which is where I now blog about my craft work and fundraising and the blog on my womb cancer organisation website where I blog about womb cancer issues such as awareness and general cancer issues.
I must admit that I don’t blog as much as I should do as running my womb cancer organisation takes up a lot of my time and I have to focus on that but I do try to keep the personal ones current and up to date.
The Blog's name is "Hippy Hen" and you also have the slogan "Too old to be a rock chick - so I'm a hippy hen!". Could you explain to us where this name came from?
Haha! That came about because “hen” is a term of endearment for a woman up here on west coast, much like “chuck” or “petal” is in other parts of the UK. I am not your conventional type of woman. I’m not into fashion or celebrity gossip magazine – more into rock music and motorbikes so the phrase kind of just explained who I am.
The Hippy Hen blog logo!
Do you read other patient blogs, and why? Any blogs you would recommend?
I must admit that I don’t actually have much time to read other people’s blogs although one that I do follow (and read every post) is one by Chris Lewis who runs Chris’s Cancer Community. Chris was diagnosed with Mantle Cell Lymphoma Stage IV in 2007 and he has become a good friend, even though we have yet to meet. We share a passion for wanting to see cancer patients get the best level of support, not only whilst they are going through treatment but after wards too. Many cancer patients experience isolation and find that support services are limited or even none existent in their area, especially if they live in rural or island communities. Chris believes, as I do, that social media can be a powerful tool in bringing cancer patients together and can be a tool for change in the way that support is offered.
I would also recommend the blog on the Beauty Despite Cancer website. There are a whole team of writers, of which I am proud to be one, who write about various subjects. There are cancer patients and survivors, beauty, well-being & fashion experts as well as writers from the fields of business, finance and insurance.
Would you suggest to other patients and caregivers to blog, as well? Why?
Yes I would. I actually wish that I had started to blog when I was first diagnosed and blogged about my cancer journey. It never actually occurred to me that people blogged about things like that but I have read some very powerful blog posts over recent years and realise just how much it helps to break down barriers and raise awareness. As well as my personal blog, The Hippy Hen, I have another blog on the website for my womb cancer organisation. As well as blog posts by me there are also guest posts by other womb cancer ladies and many of them write about how they felt when they were diagnosed. Many of them say they find it very cathartic to get it out of their head and down on paper (or on the laptop!!). So yes, I would recommend starting a blog, even if you keep it private or just let your close friends read it.
What is your message to patients who are fighting cancer?
I don’t go in for the “fight” language that is often used around cancer. I was told that I was a “strong warrior” and a “hero” when I was having my treatment but I never felt like it. I wasn’t fighting; for a start I couldn’t see what it was I supposed to be fighting. I just did what I had to do to get though the treatment. I took each day as it came and got through it as best I could. Then I went to bed and got up the next morning and did it all again. Unfortunately, I’m still doing that now.
I strongly believe that we as cancer patients need to be empowered to stand up for ourselves and question the medical people who are treating us. Far too often, we feel pressured into having treatment; I know I certainly did back in 2010. If I had known then what I know now I would not have had the chemotherapy or radiotherapy. The side effects where never explained to me and I felt like I had no option other than to agree to having it. I was lonely, scared and had no support.
Cancer patients need to be able to make an informed decision about the treatment they have and they can only do that if they have all the relevant information. Conventional cancer treatment can have long-term side effects, as I know only too well, yet the help and support for those patients who suffer long term is virtually non-existent and many live the rest of their lives in pain and discomfort with a low quality of life. This needs to change and has to change as more and more people are being diagnosed with cancer.
There is some good work being done by small organisations and individuals to try and change things but until the mainstream medical establishment and large charities realise that patients deserve a lot better support than they are currently getting then those patients will be left alone to struggle and try and cope with life after cancer.
More about The Hippy Hen’s blog: