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!

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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!


Mandy Riches

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.