How running and cycling taught me to cope with chemotherapy

Having chemo? Fancy a run?

For many of us, the answer is a firm “no!”, but in our latest blog, Alison fills us in on how her approach to running and cycling has helped her to cope with her treatment for breast cancer, and we think there’s a lot of wisdom in her approach to breaking things down into manageable chunks. Take a read, let us know what you think – and please do share!


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Blog contributor, Alison Carter

Keeping fit and being a healthy weight have been important to me most of my adult life. As a child and in my teens I was hopeless at all sports (always one of the last to be picked for any team), but I spent hours doing ballet and tap, which kept me fit, flexible and gave me an appreciation of what my body could do. I wasn’t an especially good dancer, but I loved it.

My twenties saw me working hard and travelling a lot for my job, with not much time for exercise. Then as I turned 30, I discovered running and a female-only gym. Both these things made being fit accessible to me, and I had a light bulb moment when I realised I didn’t have to be good at something to enjoy it. I am not fast (my best half marathon was 2 hours 6 minutes), but what I don’t have in speed I make up for in determination. And probably most importantly, I discovered the massive endorphin rush, the so called “runner’s high”, that exercise gave me. What a great stress buster!

A few years later, as my right knee started to fail me, a friend suggested we cycle from London to Paris for charity to mark turning 40. Really???140727_North_Downs_Sportive_0114

Before I knew it, I’d bought a bike and was clocking up miles and enjoying the same benefits that running had given me. The charity ride was tough, but awesome and I’m now an avid cyclist. Through all of this, I developed a real appreciation of how amazing my body is. I may never have a flat stomach, but I love what my body can do for me.

The cancer bomb

So, it was a massive curveball when this January I was diagnosed with breast cancer. How could this be? How could this amazing body have cancer in it? Ok, I’ve had stress in my life and enjoyed plenty of wine, but cancer? Me?

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Having breast cancer treatment – with the cold cap!

I know some people feel their body has let them down when they get cancer, but I think it’s just really bad luck. I had no choice about getting cancer, but I can choose how I deal with it. My feeling is that how I treat my body is my best defence against the cancer coming back (my cancer is stage 2, grade 3). And I’m sure that being fit going in to breast cancer treatment has made a difference.

What cycling has taught me 

I’m just about to have my last round of chemotherapy (number six of FEC-T), to be followed by radiotherapy and Tamoxifen. Treatment is tough, but I have been able to bring to it what I have learned from running and cycling, and this has really helped me.

Treatment plans are subject to change, but it’ll be about eight months in total, so, I broke it in to chunks, as I would any long run or bike ride, with five clear stages:

  1. Surgery
  2. Chemo
  3. Radiotherapy
  4. Tamoxifen
  5. Recovery, the new me, after eight months.

When I cycle a long bike ride, such as Ride London, I train for it for months to prepare. Strangely, this is now how I view the last 15-odd years of my adult life: building a physical and emotional resilience that I never knew I’d need until the cancer bomb was dropped.

When I’m on a ride, I’ve learned that breaking it down to goals gets me through. I didn’t invent this, it’s standard practice; your brain usually gives up before your body does in such events, so finding the psychological plan is key. My first goal may be getting to the feed station at mile 19 where I know there’ll be flapjacks and so on. Experience has also shown me that I get a dip midway on all long rides and runs. I start to tire or pain or injuries start to niggle, and the end is not in sight yet.  In my head I desperately want to give up.

My treatment has been so very similar to this: one phase at a time, then one chemotherapy at a time, setting goals and rewards, and remembering that there will be a midway dip, but I’ll get through it.

After chemo round three I fell in to a huge dip, and I could happily have given up at that point. My hair was falling out, everything tasted of cardboard, my veins hurt and I had constant acid reflux and nausea. I was exhausted. Mentally and emotionally I was spent. But I took it one day at a time, just as I would have done on a tough run or ride.

On my good days, as I emerge from the side effects, I go for walks, do a spin class when I feel strong enough (I have to lie down for two hours afterwards!) and make sure I have goals that will give me a sense of purpose and achievement. As a result, during chemo I have done a Race For Life and cycled the Pink Ribbon Tour in London. I also ensure I have plans to see family and friends on my good days. These things exhaust me, but they fill my soul. I’ve learned to pace myself through cancer treatment just as I do through a run or bike ride.

My last chemo is next week. I know I’ll have a tough week where I lose myself to side effects, but one day at a time and it’ll be done. Then I can focus my energies on rebuilding myself ready for the next phase. That first finish line is almost in sight.

For many years, Alison was a fashion buyer. She now leads the creative photo studio for a large UK retailer. Working to to squeeze as much out of life as possible, she can often be found either on her bike, in a theatre, talking to her cat, at an art gallery, or having crazy fun with her niece and nephew. You can follow her blog here.  

For tips on how to support a friend with cancer, take a look at this blog entry. And for a list of things NOT to say to someone with cancer, read our blog here. 

 

It’s Breast Cancer Awareness Month – meet Emma!

October is Breast Cancer Awareness Month and, having shared the story of one of our Directors last month (for Blood Cancer Awareness Month), we thought we would share the story of Emma, our other founding Director this month. Diagnosed with breast cancer in 2006, Emma experienced the isolation that often comes with a cancer diagnosis and is all the more acute when you’re young. Way back in 2008, Emma started meeting up with other young adults with cancer and the roots of Shine took hold. Today, Emma runs Shine with Ceinwen and is Shine’s Director of Operations and Training. Read on to learn more about Emma and why Shine does what it does!

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Emma (left), with Ceinwen at Shine’s 2016 Great Escape

When were you diagnosed and what with?

I was diagnosed with breast cancer in June 2006. I had two tumours and the cancer had spread to five of my lymph nodes. I also had unconfirmed spread into my breast bone and the lymph nodes in my chest so I’m still not 100% sure what stage my cancer is/was!

How did you find out you had cancer?

Early in 2006 someone drove their car into the back of mine while I was stopped at some traffic lights. I had whiplash and sprained ribs and was having physio. I found a lump in my breast that was next to one of my ribs so the GP thought it was a bleed caused by the accident but said he would refer me to the hospital anyway. When I finally got my letter from the hospital, the soonest they could see me was in 12 weeks time (this was before the two week wait was introduced in the NHS). While waiting for my physio appointment at a private hospital (I had BUPA through work), I noticed a sign for a specialist breast centre so I figured I’d get an appointment there as I had already paid my insurance excess! I was seen the following week and was sure that they were doing all of the tests to get more money from the insurance company!

I was so unconcerned about the follow up appointment that I went to receive the results on my own on the way home from work. The words from my doctor – “I’m really surprised but it is a little cancer” – will always stay in my mind. I remember thinking ”what’s a LITTLE cancer??”

What did you think and feel when you were diagnosed?

Because I had come in alone, the consultant suggested that I call my partner and come back in when he arrived. I was in shock. I can only remember certain phrases like “you’re so young that we’ll throw all of the possible treatment at you” and “normally we aim for five years survival but, with your age, we are going for 20”. I remember thinking that I would still be in my 40s after 20 years and that that wasn’t long enough.

Over the next few days, I went into planning mode to deal with work, friends, family and the huge number of hospital appointments that I suddenly had to fit in. Looking back, I coped by focusing on the practicalities such as finding pyjamas for hospital that buttoned up at the front (surprisingly difficult!).

How did the people around you react?

My partner and family were as shocked as I was. We had no family history of cancer and I hadn’t met anyone who had dealt with cancer at my age before. I really thought that it only happened to older people.

Everyone tried to help with practical arrangements but I avoided a lot of my colleagues and friends as I felt awkward dealing with their reactions. I lost count of the number of times I heard phrases like “but you’re too young for that” (I know!) and “my uncle’s brother’s wife’s sister had that – oh, she died” (thanks, that’s really helpful!).

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Emma during treatment

What treatment did you have?

I started with surgery to remove the original tumour but, when I went into surgery, they found another one. I had a lumpectomy rather that the mastectomy that would have been recommended if they’d known about the second tumour. I decided not to go back for the full mastectomy as my surgeon had got clear margins (it’s amazing how much jargon you learn!).

My oncologist then recommended a CT scan and a PET scan both of which showed up “dodgy bits” in my breastbone and the lymph nodes in my chest. At the time, I didn’t really understand the difference that made to my diagnosis but as the next lot of treatment would have been the same anyway, we went ahead with chemotherapy.

We also discussed the fact that I hadn’t had children and talked about options to preserve my fertility. My partner and I discussed it and decided not to take any of the options as they meant delaying chemo. I started my treatment with injections into my stomach to send me into a chemical menopause.

All together, I had 8 rounds of chemo, given every three weeks (FEC-T) and also started on infusions of Herceptin that went on for a year. I also had six weeks of daily radiotherapy to the remaining breast tissue and into my neck and I also started taking Tamoxifen tablets, (though I later switched to Exemestane). I stayed on the injections and tablets for 7 years in total. I used to say that I would rattle if I was shaken!

How did you feel through treatment?

The surgery wasn’t too bad as I was in a lovely, swanky private hospital with three course meals and a wine list! It was a bit scary having the anaesthetic though – and a bit weird coming round and finding myself halfway through a conversation that I couldn’t remember!

Going straight into menopause was also bit of a shock to the system. Overnight I developed massive hot flushes and sweats and felt like an old person when I tried to get up from the sofa.

The chemotherapy wasn’t as bad as I expected it to be but it did get worse as I went through all eight rounds. By the end of it, I had absolutely zero energy and felt like I’d been hit by a truck. My veins also decided to stop working so I agreed to have an operation to implant a portacath. This meant that the Herceptin could be given straight into a port under the skin in my chest which had a tube leading straight to my heart (sounds scary right but it definitely made life easier!).

My treatment went on for 7 years in total and I still take some tablets to deal with the after-effects of the treatment. After each type of treatment finished, I was worried about the cancer coming back as I felt like I was losing some protection they gave me. I still find the regular scans frightening though. I haven’t found a way to remove that ‘scanxiety’ completely but it is much easier with my Shine family around me.

Throughout treatment I thought that, once I was done with the main treatments, that my life would go back to normal. That never happened and when the hospital visits slowed down and treatments came to an end, I felt as if I had been abandoned to work out what came next. I felt like I was living in a ‘should be’ era – I should be feeling amazing that I’d come this far, I should be able to pick up my life from where it left off…. I am naturally a very positive person and I didn’t initially recognise that the feelings that I was having were of isolation, anxiety and depression.

It took nearly three years for me to admit that I was still struggling and to take steps to get help. It is not an understatement to say that my amazing counsellor, Kathy, changed my life completely. With her, I was finally able to sort through the mess of everything that I thought I ‘should be’ feeling and to talk through the experiences I’d had through treatment and beyond. At first I couldn’t understand how talking about it would help but it enabled me to face the anxieties I had been holding on to and to feel more empowered about my future, whatever that holds.

Tell us about your work with Shine

Throughout treatment, the “you’re too young” comments kept coming and the support groups that I attended were full of people showing me photos of their grandchildren! Eventually, I met the amazing Justine through a random breast cancer chat room. She was just a few years older than me and had also been through treatment for breast cancer. We met for coffee which ended up lasting four hours and I suddenly realised just how isolated I had been.

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Emma and Justine at the first Shine party in 2008

That meeting led us to start Shine (although we didn’t have a name!) and we decided that we should reach out to other younger adults with all types of cancers. In the first year we connected with over 100 people in Dorset and it felt amazing to make sure that other people didn’t feel as isolated as we both had. We had fun too, doing things that suited us (mainly bars and coffees!) rather than the standard cancer support group format. And thus, Shine was born….

Meeting Ceinwen in 2010 was the next brilliant coincidence. Ceinwen had been diagnosed with cancer shortly after having a baby (you can read her story here) and was looking to do something similar to Shine in London. We met for coffee, which again lasted 4 hours (be careful if we ever have coffee together!), and we realised that we had a lot of similar ideas about the lack of support that was available to younger adults diagnosed with cancer. Together we started work on the ‘Small c’ Project, the first research project in the UK to look at the needs of young adults with cancer. We then went on to develop a programme of activities and events that aim to meet those needs.

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Emma and Ceinwen with Shine Trustees Laura and Christopher

We also started setting up Shine Networks in other parts of the UK, giving people the chance to meet others in similar situations much more quickly that we had been able to.

The feedback and stories we heard from the people that Shine supported in the early days quickly made my career (banking – sorry!) seem much less important and certainly less rewarding. I eventually left my career in 2012 to fully focus on Shine. I have never regretted any part of that (despite the massive impact on my bank balance!) and absolutely love my job, even on a Monday morning – and at 2am on a Sunday as it’s not really a 9-5!

Nowadays, we are both still working hard to reach the 30,000 young adults diagnosed with cancer each year in the UK and to develop more programmes to fill the gaps in support that still exist for young people dealing with cancer.

What difference has Shine made to you?

Personally, I now have a huge network of people around me that just “get it”. I can talk to people about things I wouldn’t put on my “normal” friends. I also have people that also get the dark humour and the fact that you’re definitely not being ‘negative’ by talking about your funeral music or not planning too much for the future!

I love to feel like what we do makes a difference to peoples lives, and I still sometimes can’t believe what we have achieved in just a few years (mainly because I’m always thinking about the things that we need to do in the future!). In short, Shine has definitely changed my life for the better!

How do you feel now about your experiences? What‘s been the biggest change you’ve faced?

I’ve just passed my ten-year ‘cancerversary’, but the fear of my cancer returning is still there. Certain things still trigger the trauma of some of my experiences through treatment and I don’t think that will ever go completely. However, I am much more able to deal with the scary bits now and, of course, know amazing people who help and support me.

I don’t feel grateful for having cancer. Instead, I feel grateful that I have been able to channel my experiences into something that helps other people and also brings me personal joy and fun. I try not to stress over the small stuff and I honestly appreciate much more about the wonderful people that surround me.

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Emma in 2016!

If you could give one piece of advice to yourself before your diagnosis what would it be?

This is hard! I felt invincible before I was diagnosed with cancer and I think most people in their 20s (or 30s or 40s!) feel the same way unless they have personally experienced something really scary. I’m not sure I would have taken my own advice anyway but it would probably be to appreciate the people around you and the things in life that actually matter – and to make sure that you are living the life that you want, not the one that is expected of you.

More information about Shine’s impact and our history, staff and Trustees can be found on our website here. If you’d like to get in touch, please drop us a line at hi@shinecancersupport.org. 

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Life – but not as you knew it: Living the dream

In September 2017, a group of intrepid climbers will make their way up Tanzania’s Mount Kilimanjaro while raising money for Shine. One of those making the journey is Rosie Hellawell, a member of Shine’s Dorset Network. Rosie currently blogging her way through cancer treatment (and the alphabet) and we’re delighted she’s written a blog for us about how she’s working to realise her dream of climbing the world’s tallest free-standing mountain once she’s finished treatment.  Take a read, share, and let us know what you think. And if you’d like to donate to Rosie’s trip, please check out her fundraising page here.

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Guest blogger Rosie Hellawell

DREAMS: Transforming Desires to Reality Everyday through Aspiration, Motivation and scary Statistics!

Desires

Since receiving my breast cancer diagnoses in June of this year I wouldn’t say that my long term desires have massively changed. I would still like to complete my degree, find a nice guy, travel the world, buy a house….that kind of thing. Nothing too out of the ordinary. I am hoping that cancer is just a little blip in obtaining those goals and that it is actually teaching me a lot and opening up new experiences that will be useful in the future.

Reality

However, I cannot escape the reality that my mortality has massively been called into question. For the first time I feel first-hand how precious life is and how quickly it can be taken away. I see members of support groups that I am part of, incl

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NED: No Evidence of Disease

uding Shine, being taken too early on an all too regular basis. So, in the spirit of coping with reality, I must now add ‘living for a reasonable amount of time’ to my list of desires. Unfortunately, as we all know there is no cure for cancer but to become a ‘Neddy’ (to have ‘no evidence of disease’) is now also up there with the best of the rest of my desires.

Everyday

There is no getting past it: living with cancer on a daily basis is no walk in the park. But having the support of others in my age range who are dealing with similar situations to me has proven invaluable.

A lot of control is taken away by this hideous disease but I choose to retain what control I do have by taking actions towards my future. This has been anything from getting involved with different support groups, trying new sports, fundraising, blogging and becoming an ambassador for awareness charities. But on a particularly overwhelming day it can mean simply writing a meal plan and a shopping list. I find everything is easier when broken down into smaller chunks. By doing that shopping and cooking that meal and freezing up portions for future rubbish days, I am once again back in the driving seat.

Aspiration

Aspiration is defined as ‘a hope of achieving something’ or finding the inner strength to achieve. As a wise man once said, (well actually it was Dave Pickles in his webinar last week!):

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Yes, I have just stolen his quote but it makes perfect sense! This picture speaks a thousand words to me. I refuse to let worries of failing hold me back. If I don’t try, I will never know what I am capable of and the last thing I want to do is look back at all the things that could have been if only I hadn’t let fear get the better of me. I would much rather look back at all the amazing things that I did manage to achieve.

The opportunity to climb Mount Kilimanjaro for Shine Cancer Support has come at the perfect time for me and has given me a focus to get me through my treatment and out beyond the other side. Not only will the trek itself be a huge physical and mental challenge, the fundraising and training will include targets to be met along the way. This will help with my recovery and will give me back some more of that lost sense of purpose and control.fb_img_1472033674460

Motivation

A cancer diagnoses is a pretty big motivation tool to get me off my backside and out of my comfort zone, saying ‘yes’ and taking on all the new and exciting opportunities that come my way. The fact that I can raise money for such an awesome charity at the same time is just the icing on the cake. It means that young people diagnosed with cancer in their 20’s, 30’s and 40’s will also be able to feel the full force of fellowship and shared experiences.

Statistics

Scary statistics do definitely help to motivate me. My current ‘favourite’ is that I have 43% chance of not being here in 5 years’ time. I discovered this at 3am one morning when Googling (never a good idea when experiencing steroid-induced insomnia). While I realise that some stats should be taken with a pinch of salt and that, compared to some people, I should be grateful for this figure, the stats also serve the purpose of reminding me that life is precious and none of us know how long we have left. Life can all too often be too short, so I for one am going to go out there and grab every opportunity that comes my way…. what better way to start than up the very aptly named Shiny ‘Mountain of Light’?!

Rosie is a mature social work student who lives in Bournemouth. She was diagnosed with breast cancer in June 2016 and is currently undergoing treatment.

Rosie regularly blogs about her life with cancer here and her fundraising page for the Kilimanjaro trek next year can be found here.

Life – but not as you knew it: Laughter as medicine!

Got a case of the January blahs? Here at Shine, we’ve been looking at ways that we can beat the dark, grey days and bring a bit of happiness into our lives, regardless of the challenges 2015 might bring.  Luckily for us, we found Mandy Riches of Grin and Tonic which uses Laughtercise (yes, you read that correctly!) to promote physical and psychological health.  Mandy understands cancer because she’s been there: diagnosed with Hodgkin’s lymphoma twice in her twenties, she was then diagnosed in 2011/2012 with breast cancer.  Yes, we know it sounds a bit weird but we also think it sounds like lots of fun so read on and visit her website for more information!


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Three-time cancer superhero and laughtercise guru Mandy Riches

 

There’s something about one year ending and a new year beginning that I find unsettling. It’s often a time for self-reflection which brings a myriad of emotions, ranging from the optimism and excitement of new opportunities, to a longing to simply curl up under the duvet and hide from the world. Since I was first diagnosed with cancer over 20 years ago, I’ve often had an urgency to really ‘live’ life though I’ve found that this is a double-edged sword.

On the one hand, it contributes to the fact that I can look back on 2014 and feel incredibly proud at achieving what I describe as my crazy scary challenge: cycling from Edinburgh to London in five days for charity. For someone who often feels like a cancer factory, this accomplishment helped me to regain strength both mentally and physically. The absolute focus on following my heart and in achieving something that once seemed out of reach was invigorating.

The flip side is that this urgency sometimes completely and utterly overwhelms me – the need to make the new year count, the need to make every month, every week, every day, every second count. It can be exhausting and my New Year self-reflections could easily spiral into the January blues. However, as I lie snuggled up nursing my inevitable winter cold, I have decided instead that I will laugh in the face of the January blues using Laughtercise.

What is Laughtercise I hear you ask?

Laughtercise is based on the principles of laughter yoga, which combines laughter with deep breathing. When my good friend Stephanie Hill from Grin and Tonic heard about my third diagnosis of cancer, she felt powerless and wanted to find some way to help me and my family, so she engaged us in using laughter as an exercise (as opposed to laughing at comedy or jokes). With simple, fun exercises and some deep breathing your serotonin (the happy hormone) increases, the laughter becomes contagious. You feel more relaxed, less stressed, more energised. Like many, I found it a bit barmy at first and I could have easily discarded it as “I’m way too reserved for that kind of thing”. But by simply letting go a little and using techniques to anchor it into daily life, it was brilliant.

Mandy and her colleague, Steph

Mandy and her colleague, Steph

For most of my adult life, I’ve been dancing the tango with cancer: twice with Hodgkin’s lymphoma in the 1990s and then breast cancer in 2011/12. I was devastated to have cancer for a third time, and it hit me much harder emotionally. I don’t know if it was the optimism of youth that carried me through the first two, or the cumulative effect of ‘here we go again’. Perhaps there was even an element of the unfairness of the breast cancer being caused by the radiotherapy I received for the Hodgkin’s.

One way or another, I experienced an overwhelming sense of emotion. I found myself crying for no real reason, I couldn’t sleep and I’d often wake up with tears streaming down my face. I found it really difficult to articulate what was going on.  Mortality had smacked me in face again and at least some part of me felt smashed, whether that was my sense of myself and who I was, my loss of innocence, my view on time, my view on what next.

I never thought that Laughtercise would become such a useful tool, but it did, and continues to be so. It has helped me to feel more in control of my life at a point when it seemed like cancer had taken over everything and every thought. Physically, the act of laughing and the deep breathing also helped to release some of the tightness I felt in my chest following reconstruction for my bi-lateral mastectomy. It also helped me connect with my family and friends in a really meaningful way.  When you’re dealing with cancer, people don’t know if they are allowed to laugh around you.  It was easy for me to give ‘permission’ for them to laugh with me, and although it started as an exercise, it was contagious and incredibly powerful, helping them to relax and deal with my illness too.

I know it all sounds a bit mad, but honestly you have to try it!  I am passionate about bringing more laughter into the lives of as many people as possible, and together Steph and I have created a DVD called “Dealing with Cancer? Laughter Works”. January can be a tough time for many people, cancer or not. Whether you’re happy, sad, or just need a little pick me up, I’d encourage you to get out of bed, grab the next person you see, or simply look in the mirror and give it a good Ho Ho Ho. It’s infectious!

In addition to being a freelancer writer and running her own Customer Experience Consultancy, Mandy is now proud to be a Director of Laughter at Grin and Tonic.  

 

Life – but not as you knew it: No way back!

One of the things that no one tells you when you’re first diagnosed with cancer is that you’ll never be the same (and if they told you, you probably wouldn’t believe them!).  Whatever the outcome of diagnosis and treatment, many people feel changed.  This can be a disorienting feeling – after all, we just want to get back to normal, don’t we?

In our latest blog, Jen shares her thoughts on some of the good  and bad  changes that she’s experienced since her diagnosis a year ago.  Here at Shine we don’t always push “positive thinking” because – let’s be frank – there’s A LOT about cancer that just isn’t positive.  However, as Jen points out, “there’s nothing like a life threatening illness to highlight what’s truly important in life”.  It’s a shame we don’t often get this insight without the life threatening illness, but it’s still worth remembering!


Jen Hart

If I had the choice of never having had cancer and returning to the life I was living before, I most definitely would. The rollercoaster of a cancer diagnosis and treatment is a long, bumpy, and terrifying ride. It’s also one that does not end where it started. To quote the title of this blog series: it’s your life, but not as you knew it!

As I slowly accept a new version of me within my strange new world I am starting to appreciate the positive changes that have come about due to my ride on the cancer rollercoaster. I may have new limits but I also have new priorities, new perspectives, and new hopes and dreams.

Following my diagnosis last October, I took a stoic approach, gritted my teeth and readied myself for six months (Ha ha! This was my first naive mistake!) of gruelling treatment. I was determined that I would get through whatever I needed to, be cured, and then return to my normal life. I would plod on with living as if cancer had never happened (this was naïve mistake number 2!).

Almost all of my family and friends shared my naïve view, and why wouldn’t they? Unless you’ve had experience to the contrary it is a perfectly sensible view to hold.   Many times throughout my treatment I was reassured by well-meaning friends and family that it would soon be over and I would get back to normal. The concept seems laughable to me now, but for at least the first few months of treatment the thought of returning to a “normal” life kept me going. I was fiercely determined not to be “changed” by cancer. I did not need a brush with my own mortality to be taught to appreciate life thank you very much!

It’s very difficult to accept change when it is forced upon you so brutally. Initially it was the superficial, physical changes that were my focus and I was determined to return to exactly how I looked “before”, as soon as possible. At times it felt as if my entire identity was encapsulated in the way I looked. I think the focus on these superficial things stems from the fact there is absolutely nothing you can do about the non-superficial things that have been changed. The scars from surgery, the damaged nerves and muscles from chemotherapy and radiotherapy, the terrible memory and disrupted thinking process – it has been hard to accept these things as part of my new life.

As time has passed, however, I’ve had to slowly learn the art of acceptance rather than try to return to ‘normal’. I will never look like I did before and I will never feel like I did before but, you know what? That’s OK. I may be the same person but my experiences have shifted my life onto a completely new trajectory.

There are, of course, the physical changes that I have to learn to live with. I must accept that I may never regain the same level of fitness and health I enjoyed before and that there may be permanent damage done by treatment. I am learning to let go of the anger and bitterness that I sometimes feel about that. It’s easy to say “well at least I’m alive” but at times it’s difficult to feel that. And then there is the threat of a recurrence that all cancer “survivors” must learn to live with. I need to learn to supress the reflex to break out in a cold sweat every time I have a nagging pain or feel a lump or bump. I am assured it gets easier with time and I’m sure it will.

Looking past these more negative aspects of my changed new reality there is, however, a much stronger and overriding positive change. There’s nothing like a life threatening illness to highlight what’s truly important in life. I have been shown the true value of relationships and witnessed the best of humanity in the love and support I’ve had showered upon me. Small acts of kindness have meant so much. I hope that in my new life I can always remember how these small gestures have impacted upon me and pay the kindness forward. I know more about myself now than I did a year ago and I have an appreciation for aspects of my personality that I perhaps didn’t previously value or recognise. I am aware of how quickly ‘good health’ can be whisked away and I find joy in simply being able to walk or run in the sunshine. I try to focus on what I am doing more and think about the future less. Living in the moment is such a cliché but, for me, it has been directly correlated with peace and happiness. In my new, post-cancer life I have found a deeper appreciation of how I can create my own happiness, and I fully intend to create as much as possible.

Returning to ‘normal’ is no longer my goal. My new normal is pretty damn good. There’s no going back. And that’s OK.

Jennifer has just finished her treatment for breast cancer. She lives in Dorset with her husband and two daughters – and, with two others, runs Shine New Forest!

Life – but not as you knew it: The Perils of Living Life in Overdrive

Most young adults living with cancer have been told at one time or another that we ‘should live every day like it’s our last’ (if there’s one thing cancer is good for, apparently it’s a cliche!).  But what happens when you go all out and try to make up for ‘lost time’? Is it possible to live life at 100 miles an hour and still function?

Is our latest blog, Victoria describes her experiences of living her life in fast forward – what she did, why she did it, and the unexpected pressure that came with creating a ‘list for living’.  Take a read. It’s a great reminder of the need to balance fun and a little bit of rest!


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Guest blogger: Victoria Bel Gil (pictured with two members of X-factor finalists Rough Copy)

The emotional aftermath of my recovery from cancer has felt like having an unexploded bomb in my back garden. Even though I know that it’s gone for now, I still dread the day that it may become active again. I worry that, after years of lying there quietly and undisturbed, it will begin ticking and become an immediate danger to me once again.

While this feeling does not follow me around everyday, it catches up with me when I am faced with having to make future plans and decisions around my life. Simple and enjoyable tasks such as signing up to a new mobile contract, buying new furniture for my recently (pre-diagnosis) purchased home, or enrolling on a year long college course began to give me anxiety. I have felt – and still do feel – uneasiness around making future plans.

Once I finished treatment, many well-meaning friends and family members wanted me to catch up on what I had “missed out on” and to live my life “for today”. Invitations flooded in – and I took them all!

In the first six months after treatment I visited Brownsea Island twice, changed jobs, enrolled on an evening course in floristry, went to London Fashion Week, got a boyfriend (and ended it), saw an X Factor finalists’ show, visited gardens in Holland and Hampton Court, rocked out at two festivals, travelled to visit friends in Devon, Bath, Cardiff and London, and spent Christmas in the New Forest – and the list went on. Days out? Yep count me in! Night out on the town? Yes please! I even created a ‘list for living’ full of all those exciting things that I’d always wanted to do but had never got around to. Having looked cancer in the eye and showed it the door, the list became vitally important to me. I felt as if I had to fill every minute of my existence and not waste any time.

So what’s wrong with getting that tattoo you’ve always wanted (yes I got one!), doing that charity sky dive (not yet but I’ll be doing it for Shine when I do!), or booking a holiday to India (I’m saving up)? Nothing I hear you cry. Do it!

While ‘doing it’ is great advice, I had not counted on how exhausting it would be. I also discovered that the flip side of a life in overdrive can be unbearable disappointment. I had loads of amazing days out and fun times, but I often ended up feeling exhausted and unfulfilled. Take one of my living list items: run a half-marathon. At the time of my breast cancer diagnosis I was 38 and recovering from a recent divorce. Running had been a coping mechanism for the end of my marriage and, before my diagnosis, I had signed up to run a half-marathon for children’s cancer charity. I had completed many 5 km and 10 km races and was well on my way to achieving my goal.

And then: bam! In March 2013, I was diagnosed with aggressive breast cancer in my right breast and was given six rounds of chemotherapy, a right mastectomy, and 25 blasts of radiotherapy followed by 17 Herceptin injections over 15 months.

Throughout my treatment, much of my half-marathon training went on hold, though I am proud to say that I continued to run (slowly) throughout chemo, much to the terror of my parents. I even did an off-road 5km in the pouring rain between rounds 5 and 6 of chemo! Once I had my mastectomy, however, even my stubbornness couldn’t ignore the infections I kept getting in my surgery site as a result of pushing myself too far. When I realised I needed to stop, I felt a huge sense of loss and disappointment. My confidence in running had gone and, unbeknown to me, my little living list had put me under enormous pressure.

Eight months post-treatment, I have only just started running again with my little group of running friends, and my confidence is slowly returning. Instead of feeling bad about not completing the half-marathon, I have realised that I needed to start “listening to my body” and be more realistic and gentle with myself. To help me do this, I’ve devised some strategies:

1) Set realistic goals and plans: I have re-written my list for living to be more realistic and flexible to my new needs. Running a marathon may not be possible but running weekly with my group certainly is. Following an 8-week return to fitness programme that I was referred to by my GP, my fitness has improved. Last week I went on an evening run and kept up with my friends for nearly 5km!

2) Be kind to myself: I have allowed myself to take it easy and, rather than beating myself up, I focus on how far I have come in the nine months since treatment. If I don’t feel like running one day, I don’t feel bad – I just go to the next session and move on.

3) Celebrate the new goals and don’t underestimate new achievements: In my new post-treatment life, I run daily marathons. These include getting myself up, showered and dressed (impossible after my op without help), walking my dog twice a day, going to work part-time and doing my own house work (which somehow always seems so satisfying now!).

Is life dull? Not at all. I feel proud that I am taking back my independence. I still believe its great to plan and take small steps. But it’s also important to celebrate those steps and to remember that even though we are slow and hesitant we are still moving forward.

Oh and the bomb? Well, hopefully if it starts ticking again I will be better prepared. I look forward to meeting the hunky fire fighters who can help to blow it up!

All about Vicky (and Shine Birmingham)!

In this week’s blog, Vicky Stock, who co-organises our Shine Birmingham Network introduces herself and talks about why Shine is important to her. Have a read – and join her on 6th June if you’re free!

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Hi all, I’m Vicky, one of the organisers of Shine Birmingham and I thought I’d write a bit about how I become involved with Shine. Our next meeting is June 6th from 6 to 8pm at Cherry Reds in Birmingham centre. I hope you’ll join us!

Although I’m only 35, I’ve had breast cancer twice. Five years ago, I found a lump in my left breast. I went straight to the GP, just thinking it’d be a cyst or something – I’d not had anything like it before. The GP wanted to wait a week to see if it went down and I remember spending the week, occasionally prodding it, willing it to shrink. When it didn’t go away, the GP referred me directly to my local hospital. I got called for a mammogram within two days, and a month or so after finding the lump, following scans and biopsies, I was diagnosed with invasive ductal breast cancer and my rollercoaster ride began. Since then I have also been diagnosed with cancer in my right breast (in 2011), had about 5 surgeries (including reconstruction), chemo and radiotherapy, targeted drug therapies, hormone therapies/injections, and experienced the added horrors of suspected metastatic cancer (thankfully now presumed benign).

So, how did I cope with all this? My emotions were all over the place. I was determined to stay as normal as possible – I worked all the way through my treatment (this was helped by the type of job I do and supportive bosses) and I carried on with my normal activities as much as I could. I was also determined from the start that I wanted to use my experiences to help others. I really felt that such a horrible experience had to be turned around, if at all possible.

Quite early on I’d noticed that people in their 20s and 30s were in a minority in the waiting rooms. I’d asked about support groups and been told there was one, but that the average age was quite high, and that the members had had their treatment some time ago. I often saw signs for an 18-25 group, but nothing for younger people over 25. I started to feel that there was a gap – and not just for breast cancer, but for all cancers.

Months later, I found out about Shine Cancer Support. It all clicked in my head – this charity summed up everything I wanted to do, and had tried to do earlier by setting up some meetings in Birmingham with another friend. I got in touch with Emma, and I’m now co-organiser of the Birmingham branch. It has been a slow burner – our numbers are small but I recently followed the wonderful example set by Soraya and Lesley in the North East and sent information about us to all of the local clinical nurse specialists and cancer managers asking for their support. I have had a fantastic response, which is really thrilling!

I am excited by this opportunity as it has been an idea milling around in my head since my diagnosis almost 5 years ago, and I really feel that it could make a difference to others going through cancer at a young age. Friendship and support from others who have been through a similar experience means that you have a connection, and that you can say stuff you might otherwise not feel able to share with partners, family or other friends.

I think I am the sort of person who needs to be doing something and feel that this rubbish will be turned around into something better. That is why I volunteer as much as I can, why I organise various fundraising events, why I constantly push new campaigns or fundraising initiatives. My recent newer activities include speaking at events, including a health and wellbeing day at a local hospital where they wanted someone to talk about their cancer and their volunteering experience. Doing these activities, raising awareness, funds, and helping support others is a passion for me; it’s interesting how I, who used to actively avoid public speaking, have now become a passionate advocate for Shine. In a funny way, if it hadn’t been for cancer, this new way of life and giving to others may not have happened. Who knows? It’s funny how life works out.