Wellbeing and wildlife: how nature helps me feel better

In this guest blog post, Shine member Hazel writes about how getting outside helped her to cope with treatment for cervical cancer.


It was 2pm. I’d gotten out of bed at around midday, but I hadn’t bothered to get dressed yet or even brush my teeth. The cloudless blue sky and warming sunlight beckoned me to leave the house, but they were hidden behind my tightly shut window blinds. I sighed, disappointed in myself for not making the most of the glorious weather, and wrote it off as ‘one of those days’.

As the daylight faded I told myself tomorrow would be different. I set my alarm, laid out my clothes and put my binoculars and camera into my backpack. Tomorrow I would go out for a walk.

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Hazel on the chemo ward

After being diagnosed with cervical cancer in November I underwent four rounds of chemotherapy, twenty-five fractions of pelvic radiotherapy and three doses of brachytherapy (internal radiotherapy). After finishing treatment in January the reality of the whole experience sunk in and early-onset menopause began. Anxiety, hot flushes and night sweats, coupled with aches in my pelvis, often make it challenging to get a good night’s sleep. These conditions give me go-to excuses for not leaving the house, especially on gloomy, cold days, despite knowing that getting out of the house makes me feel so much happier. Listening to birdsong, looking for wildflowers and immersing myself in nature are the things that help me forget about cancer and just enjoy being alive.

The next morning, true to my intentions, I headed out to one of my favourite local nature reserves. It was a beautiful day again. I had another chance to get out and feel better. I walked under a canopy of huge beech trees with their smooth grey trunks flanked by stocky holly trees, listening out for birdsong as I went. Among the various tweets and chirps cascading around the woodland my attention was caught by a series of loud, high pitched ‘pip-pip’ calls. Over the past few years I’ve made an effort to learn the songs and calls of birds (you don’t need to know which bird is singing to appreciate the wonderful sound though, of course!). I recognised the ‘pips’ as being the call of a nuthatch: a beautiful little bird with blue-grey feathers on their backs, pale peach plumage on their bellies and a striking black stripe running across their eye. I looked up into the trees, scanning the branches in the direction of the sound. I soon spotted not one but two nuthatches, a male and a female, using their beaks to prise bark off a silver birch tree in which they were busily hopping from branch to branch. I stood perfectly still, trying not to disturb them.

I get so much joy from watching wild animals going about their daily lives, gaining insight into their behaviour. There’s no space for anxiety about the recurrence of cancer or worrying about the future in those moments because my full concentration is given to the bird, butterfly or other natural wonder that I am in the presence of. After a few minutes one of the nuthatches flew over to a tree, clinging to the bark with its powerfully clawed little feet. It cautiously paused to look at me before it began stuffing the bark it had collected into an old woodpecker-made hole in the tree’s trunk. They were building a nest! I’d passed that hole-laden tree many times and wondered what creatures might make use of it; now I was witnessing something I had never seen before and it felt like such a privilege. It brought a smile to my face which lasted the rest of that day, and returns now as I recall the details of the encounter to write about it. This is the kind of moment I need to remind myself of when I am struggling for the motivation to get out of bed!

More recently, after the familiar difficulty of getting an appointment at my GP surgery, a sympathetic doctor prescribed me an HRT drug. I could have hugged him, I was so overjoyed at the thought of getting some undisturbed, hot-flush-free sleep. Unfortunately, upon consulting every pharmacist in the locality, I found the drug was unavailable with no timescale for when it might be back on the shelves. In my despair I sat and cried in my car.

I knew I didn’t want to be out walking on reserves looking and feeling as I did, so I sought solace among the plants and wildlife at home in the garden. Gazing into the pond I watched smooth newts: males with their striking, spotted breeding season colouration, and sand-coloured females. Their tails quivered, propelling them to the surface. They paused, suspended just long enough to take a gulp of air before descending back to the bottom of the pond, leaving a trail of tiny bubbles. There were also dragonfly nymphs, formidable predators in this tiny underwater world, sitting motionless and deadly. Some of our largest dragonflies spend up to four years in this form before crawling up the stems of plants and emerging as the beautiful adult winged insects (which live for a maximum of only seven months). With very little effort, my sadness and frustration had diminished, replaced by the childlike wonderment of watching newts and dragonfly nymphs.

At sea

Hazel working at sea as a wildlife guide in 2017,
specialising in whales, dolphins, porpoises and seabirds

Of course we are all entitled to days when we just don’t feel like going out, getting dressed or getting out of bed, and there is no shame in that. Our bodies need rest and time to heal. Comfy clothes, chocolate and binge-watching your favourite TV series can be hugely therapeutic! For me though, there’s nothing like getting outside, even if just for half an hour, to seek out wildlife encounters and marvel at nature. In those magical moments my cancer might as well not exist; I don’t give it a thought because I am consumed in marvelling at the beauty of the natural world – and I feel so much better for it.

 

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. 

Life – but not as you knew it: Coping with infertility

In many cases, cancer treatment affects fertility.  Here at Shine we know that (a) health care practitioners don’t always deal with fertility and cancer issues very well and (b) questions about fertility can be one of the toughest things to deal with after a diagnosis.  Shine’s 2012 survey of young adults with cancer found that a whopping 50% of people didn’t feel that they’d been adequately supported to preserve their fertility prior to starting treatment.

In our latest blog, Rhian Jenkins (who also coordinates Shine’s Cardiff network) shares her story of diagnosis with ovarian cancer at 25, and how questions about her fertility have impacted upon her.

If you’d like to chat to others about your experiences, why not request to join Shine’s private Facebook group? We’ve got 400 men and women chatting cancer there – we’d love to see you.


Rhian Jenkins

Last week I discovered that I have gained five unwanted, un-shiftable pounds. As I stood in the tiny room at my GP’s surgery, my toes gripping the scales, I hastily added two inches when the nurse asked ‘height?’ in the hope of achieving a more desirable BMI.

The bad news: The nurse didn’t believe me and instantly had me standing flat-footed against her height chart while I mumbled something about wearing platforms last time I was measured.

The good news: Not even the most furrowed-browed of nurses tells the only twentysomething in menopause clinic to eat less cake.

I was 25 when I was diagnosed with germ cell ovarian cancer. At first, I was thought to have a cyst and, reassured by everyone’s affirmations over my general health and my age, I set off for an ultrasound expecting to hear what statistics would have me believe. The walls in the waiting room were plastered with posters on nursing and the chairs were filled with expectant mothers. As I fleetingly fretted over losing my fertility to a benign condition, I was ill prepared to be plunged into a world of tumours and treatment decisions.

The nature of my cancer and treatment left little chance or time for debate regarding fertility preservation. I began chemotherapy a week after diagnosis in the vain hope that my remaining ovary would jump back to attention once treatment ended. The almost poetic irony that the very ‘things’ that were meant to be a source of new life were on a mission to kill me was not lost on me – I tried desperately to see the funny side.

At the beginning of treatment, when your mind is preoccupied, it can be difficult to discern the importance of losing your fertility. At that point, it’s just another potential ingredient in a monstrous, scary, side-effect sandwich. Every time I tried to brush aside conversations about the possibility of infertility and claim I wasn’t that bothered, my consultant reminded me that ‘our aim is that one day it WILL matter to you.’ It seemed like something that was so far away, so hypothetical, and so disconnected from anything I was going through that it seemed an absurd thing to worry about. It was only when the twelve month post-chemo bell rang and I gained the official title of ‘menopausal’ that I began to realise and, dare I say, resent how different my life looked because of cancer. I sat once again in the same old waiting room, this time to collect my prescription for hormone replacement therapy (HRT).

Throughout treatment I vowed that if I couldn’t always be positive, keep my chin up, or stay true to any of the other clichés often demanded of cancer patients that I would, at the very least, remain compassionate towards others. I didn’t want my own cancer-filled universe to consume me. I didn’t want to become bitter or maudlin and I tried hard to avoid asking ‘why me?’ I placed a great deal of importance on not feeling sorry for myself and got on with what had to be done. Why then, a year after the hardest part of it all, was I feeling so cheated? I felt like a fraud every time I clicked ‘like’ on the scan pictures of acquaintances that appeared on my Facebook newsfeed.

Speaking about fertility is difficult and I guess it’s hard to grasp what it’s like unless you have been through the rigmarole of cancer treatment and losing your fertility. When I try to engage with friends who haven’t experienced cancer they usually look perplexed and cut any potential conversation short with an exclamation of ‘but that’s the least of our worries, right!’. Being fortunate enough to have the luxury of an infertility ‘issue’ combined with the fact that you shouldn’t be menopausal in you twenties is confusing. The turmoil and guilt I feel every time I acknowledge that maybe I’m not OK with the hand I’ve dealt can be hard to deal with.

It’s now two years on from my diagnosis and, like my scars, the issue of fertility is something that serves as a constant reminder of my disease. When I catch myself daydreaming about a future it is usually the future that I thought I would have. In my pre-cancer naiveté I never expected fertility to be a hurdle I would have to overcome. It was certainly never something I thought I would have to ‘work at.’ Instead, I am learning to be comfortable with the uncertainty the future I have been afforded while also learning to be excited, instead of daunted, by the possibilities of adoption, surrogacy or even egg donation/IVF.

Rhian lives in Cardiff and coordinates our Cardiff network.  She’s currently getting ready to go on Shine’s 2015 Great Escape!