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: Pregnant Pause

In our last blog, Sam Reynolds shared her experiences of living with cancer and a small child. But what if your cancer treatment has affected your pregnancy and fertility?

Chemotherapy, radiotherapy and other drugs can all affect the ability to have children. For many young adults with cancer, coping with post-treatment fertility problems can feel like yet another massive hurdle that has to be overcome– and it’s something that has to be dealt with for years after the initial diagnosis. We also know that fertility issues are often dealt with poorly by clinicians; in Shine’s 2012 survey of young adults with cancer, almost 50% of people told us that they hadn’t felt adequately supported to preserve their fertility prior to starting treatment.

Writing poignantly below, our writer tells us about her experiences of terminating a pregnancy, cancer and fertility treatment. Cancer and pregnancy is rare, and we know that there aren’t any easy answers to infertility. We firmly believe, however, that shedding more light on these experience is important. So many young adults with cancer deal with infertility quietly and on their own, struggling to make sense of what they’re experiencing. We want to change that.

To get in touch, please check out our Facebook page, website or follow us on Twitter.

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Pregnant Pause: Cancer, Termination and IVF

Three and half years ago I was diagnosed with bowel cancer, aged 30. I was also eight weeks pregnant with my first baby. The shock of the diagnosis was quickly superseded by having to make some important decisions and take many actions. Requesting to see the top specialists in the areas that I was now acutely involved in – oncology, surgery and gynaecology – it quickly became clear that it would not be possible to keep the baby if I was going to survive. The location of the tumour, and the radical surgery required to remove it, meant that we couldn’t. Having explored as many options as possible, I had a termination two weeks after the diagnosis. I remember asking my husband to write down very clear bullet points about why this had to happen; I wanted to be able to reassure myself later if doubted my decision. We were devastated.

At this point my medical team said there was a chance my fertility would be ok, as long as surgeries and treatment went smoothly. I knew that I may be eligible for in vitro fertilisation (IVF) and I was given a three-week window in which to try it before my first surgery. Despite being told there as a high chance it may not work due to my recent pregnancy and short time frame, we got four embryos for storage.

The next year was spent in a whirlwind of treatments and surgeries, dealing with the very physical and even more emotional changes required to ‘get through’ cancer. All the while I spoke as openly and honestly as I could with family, friends and new people in my life about the experience – how I, we, were feeling, and how I was looking forward to it being over.

Coping with life throughout it all was hard at times, and I felt more fragile and weaker than my ordinary self. I found other people’s good news hard to hear but desperately wanted to be ok with things. Pregnancy news in others was often the worst, although pregnant people or their new babies much less so. I asked people to email me their pregnancy news so I didn’t have to process it face-to-face, but felt guilty about having to do so. I knew I had to be rational about normal life carrying on around me but this still felt so hard. People often said ‘you’re strong, I couldn’t cope with what you’ve been through’ but if I ever wanted to ask ‘why me?’ I tried to remind myself equally ask ‘why not me?’. It’s just a shame it’s anyone.

I had to find a way to accept what was going on and what we had had to do. I remember a friend emailing, saying ‘I’m so sorry about the miscarriage’ and I don’t think I corrected her. I didn’t have the energy to explain it or risk feeling exposed, potentially judged, and even more sad.

Eventually after a third surgery I was told I was cancer-free. It is often at this point cancer survivors talk of their difficulty in adjusting to life – finding their new “normal”, one you didn’t choose or want to have to explore. Despite doing well in many ways – I am healthy again, eating well, and have made exciting changes in my career, the emotional fall out has been had the biggest impact. I feel guilty for wondering whether, had I just had cancer to deal with and not the loss of a baby, would I have bounced back better now? Be more adjusted? I just have to keep being honest with those closest to me about how we’re coping and looking for support along the way.

Being pregnant with cancer is rare but it is not unheard of – 30,000 people aged 25-49 are diagnosed with cancer every year in the UK, about 60% (18,000) will be women and a handful may be pregnant at the time of diagnosis. Another way of looking at it is cancer occurs in approximately 1 in every 1000 (0.001%)[1] pregnancies. I am aware of other people like me now – some have been able to keep their pregnancies, others not. The hardest part is knowing that you couldn’t have done anything differently. I tell myself not to dwell on what might have been but that’s hard when you’re looking at your future, thinking about how things might have been so different.

We have now been trying for a baby for over a year, and I’ve been told that I have physical issues that may make it hard to have a baby. Having just found out our first round of IVF hasn’t worked, my resilience is being truly tested and running low. Despite this, I actually feel clearer than ever about our plan for a family, and I know that we will have a family of our own one day – hopefully sooner rather than later. I hope my future involves acceptance, peacefulness and a happy heart. Isn’t that just what everyone wants?

 

[1] http://www.cancer.net/coping-and-emotions/sexual-and-reproductive-health/cancer-during-pregnancy