Life – but not as you knew it: The importance of a cancer crew!

At Shine, we’ve always believed that there is a lot to be gained from being around others who just get what life with cancer is like.  We now run 11 networks across the UK which have men and women who have experienced a cancer diagnosis meeting up for coffee, drinks, dinner and occasionally some (very bad) bowling.  Once you’re diagnosed with cancer, many people feel like they’ve lost something; in our latest blog, Ellie Philipotts explores both the losses and gains that come with cancer and tells us why she thinks a cancer support network is so important.


Ellie Philpotts.

Our latest blogger – Ellie

 

Cancer, cancer, cancer. If you’re reading this, you can probably say you’ve been there, done that and got the t-shirt – but lost a number of other things in the process: hair, body parts, confidence, friends….

Going through all of this is almost second-nature to us Shiny people, but not to the average Joe, (which can seem like another term for ‘every person in the world but me’.)

I think there’s an irony in the fact that cancer itself is formed of millions of little cells going haywire, leading to what feels like millions of medical procedures to solve the problem and yet it’s one of the most isolating things a person can go through.  Despite the amount of people who’ve also had this diagnosis, when your own journey begins, it definitely doesn’t feel like millions of others know how you feel, either mentally or physically. What I’ve discovered though is that probably the biggest cancer perk (yes, they exist!) can be found in a new, post-cancer support system.

I was diagnosed with Hodgkin’s Lymphoma in 2011 when I was 15. Less than two months later, I went on my first ‘cancer trip’, to London with Teenage Cancer Trust. We completed a music workshop backstage at the Royal Albert Hall; met Roger Daltrey and saw The Who perform in aid of the charity. The next day was full of exploring Camden and realising how lucky I was to have been given such a great break from chemo and steroids.

From then on, during the rest of treatment and beyond, I’ve been heavily involved with Teenage Cancer Trust. My Birmingham Children’s Hospital group went on social events like meals every month and trips to London; sailing with the Ellen MacArthur Trust, two incredible Find Your Sense of Tumours; Look Good Feel Better days on the ward; Clothes Show Live tours…the list goes on!

In September 2014, I moved away from home to study English Literature and Journalism at Cardiff University. Obviously this was a big change – leaving the life I’d always known for a four hour round-trip away. Cancer barges into your life without warning, but after a while it becomes a part of your identity, so although by this stage I was no longer a patient, I was still leaving my hospital and support group at home. I’m not someone who wanted to forget about cancer as soon as I finished treatment. Instead, I’ve really liked being involved with different charities, and although my life definitely isn’t cancer-orientated now, it is nice to have my security blanket there.

In January 2015, I attended my first meet-up with Shine Cancer Support, this time in my new home of Cardiff. I heard about Shine Cardiff randomly after noticing Rhian, Cardiff’s co-founder, featured on the Humans of Cardiff Facebook page. I soon went along to a meet up at a local café which was lovely.

Shine Cardiff

Shine bucket collection on the streets of Cardiff

Despite being the youngest person in the Cardiff network (as well as the longest off treatment), I’m so happy I joined and I still find that I can relate to the others’ issues. More importantly, we definitely don’t just talk about cancer and we’ve had a lot of fun chats during our Friday ciders, Sunday coffees and Cardiff Bay dinners!

And that’s why I think Shine is so important: despite the different ages and life stages (some are married with children; I’m a student; others were diagnosed last month) we all have one big common ground and understand how it feels to have cancer. Verification that you’re not alone in feeling the way you do; a chance to make new friends; and bonding over past experiences are why cancer support groups are so important. Cancer is the reason these groups come together, but the laughter and other bits of conversation are also often one of the best ways of taking your mind off the cancer. Of course, our other friends are fantastic, but they can’t quite understand what we’re going through, because they haven’t been there themselves. The Shine crew is different! We can lose a lot through cancer – but a support group means you gain, gain, gain – friendship, happy memories, giggles, and probably weight – but weight gain from biscuits over a natter is surely preferable to weight gain from steroids, right?!

Ellie Philpotts is an aspiring journalist and student at Cardiff University. You can keep up with her on her blog

Life – but not as you knew it: Living with Post-Traumatic Stress Disorder

A couple of years ago, we were lucky enough to be introduced to Greig Trout, a two-time cancer fighter who is currently travelling around the world, getting his mojo back.  Greig is followed on Twitter by thousands who virtually keep up with his adventures. While we admire (and are hugely jealous!) of Greig’s amazing travels, we also really appreciate the honesty he’s shown in talking about the mental health impact of his cancer diagnoses. In our latest blog, Greig talks about the insomnia, depression and post-traumatic stress he’s had to cope with since he finished his last treatment.  None of these things get talked about enough and many people diagnosed with cancer feel like there’s something wrong with them when they don’t ‘bounce back’ to their pre-diagnosis selves.  Take a read below – we’d love to know what you think. You can tweet us on @shinecancersupp or email us at info@shinecancersupport.co.uk


Greig Trout photo

Greig on his travels

 

Anyone who has survived cancer will tell you that there is never a moment where the doctor turns to you and declares “you are cured”. To my knowledge that didn’t happen when I survived cancer as a child and it certainly didn’t happen this time round as an adult. Every six months you are simply told “all is looking good, I’ll see you in another 6 months”.

I was first diagnosed with cancer as a seven-year old. I had a stage IV Wilms tumour. It was pretty far gone and I had tumours in my lungs, my arteries and my kidney. As well as having my kidney removed, I had extensive chemo and radiotherapy. I was very lucky to survive when many others on my ward didn’t.

My worst fear came true at the age of 30 when I was diagnosed with bowel cancer. I couldn’t believe it. My mum had always told me that I’d had my tough time in life and that it would never come back. Perhaps rather naively I believed her.

Getting cancer as an adult was a completely different experience to that as a child. The only things I remember about being ill as a child are being sick all the time, losing my hair and the smell of the chemo. I don’t remember ever worrying immediately afterwards whether it would come back or not. People would say how brave I was but in truth I just had no idea what was going on.

As an adult I completely crumbled both before and especially afterwards. When I was ill I always believed I would get better but when I was better I didn’t believe that I was. I liken it to climbing Everest only to get the top and then suddenly having all your ropes and safety equipment taken away. I was gripped by fear. Fear of the cancer coming back, fear it hadn’t actually gone, and fear that I had very limited time.

This fear led to a whole assortment of issues. I suffered from insomnia, spending most nights staring at the ceiling first just worrying about cancer and then about pretty much everything else. I then developed severe eczema on my face and body and, when I did sleep, I suffered from night sweats. I was highly emotional and lost all my confidence. I felt like a glass filled to the top and just one drop would send me over the edge.

The worst thing about all of this was that I hated myself for feeling this way. Wasn’t I supposed to be filled with pure elation and with a new love of life, like all the cancer survivors I’d read about? I was certainly grateful but happiness seemed to elude me. I’d gone from someone who was confident and enthusiastic about life to someone who didn’t even want to leave the house. When I saw friends they would often comment on my skin or how tired I looked. It was tiredness that led me to finding out I had cancer, so each time someone said this all I heard was “Greig, you still have cancer”.

I honestly thought I was losing my mind. Cancer was all I thought about. I tried different forms of therapy and eventually resorted to anti-depressants. The relationship I was in then ended; looking back perhaps shouldn’t have come as a surprise.  I wasn’t the man she fell in love with anymore.

It wasn’t until I chanced upon an article in a women’s magazine that it occurred to me that maybe everything I was feeling was actually normal. The article was about the singer Kylie Minogue. Kylie had survived breast cancer and in the article she said that there wasn’t a day that went by where she didn’t think about cancer. Perhaps selfishly, this made me feel better. It seemed I wasn’t alone in thinking this way. I had read so many books where people proudly claimed that cancer was the best thing that ever happened to them. This was the first thing I’d read which I related to.

It took my doctors a long time to use the term Post-Traumatic Stress Disorder for my mental and physical condition. I had always associated PTSD with the military and war so I’d never associated it with cancer or illness. This seems ridiculous now considering it is all in the title; ‘post-trauma’. It doesn’t matter what kind of trauma it is.

My issues with PTSD have been worse than both my cancers put together. When I was ill I always had hope that I would be okay but that hope quickly vanished when I was better and it was the worst feeling in the world. Without hope I was lost.

I’m currently on an around the world trip and it’s my on-going experience with anxiety and PTSD that not only prompted me to take it, but also to share my story. I wondered how many people out there hadn’t read that article about Kylie and I wondered how many people felt like I did.

The good news is that a feeling of fear and anger after cancer is completely normal, and the anxiety can be controlled. I have received hundreds of emails from people around the world who have gone through exactly the same thing.  I found that simply writing a list of things to look forward to helped me to overcome my fear of the future. Within a couple of months of writing my list I started to sleep again and my skin cleared up. I started to feel excited about the future instead of fearing it.

Cancer is still my first thought of the day but I can now turn my thoughts around to much happier and optimistic ones. I have found that doing things you enjoy is the best medicine of all. You don’t have to travel the world but simply do some thing that makes you happy. Watching the sun go down or having a cup of coffee while watching the world go by are still my most favourite things in the world. I just try to do them more often now.

The main thing people should know who are also going through this is that you are not alone and that there is hope.

You can follow Grieg on Twitter at @101Greig. You can also follow his adventures of 101 Things to do when you Survive on Facebook here

If you need further help and advice to cope with anxiety, depression or PTSD, you may find the following links useful:

British Association for Counselling and Psychotherapy

Mayo Clinic blog on PTSD and cancer

Depression and Cancer on Cancer Research UK’s website