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 The shock of the diagnosis was quickly superseded by having to make some important decisions and take many actions.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

Life – but not as you knew it: The Parent Trap

Life – but not as you knew it is our latest blog series on living with cancer as a young adult. In this blog, Sam Reynolds writes about being a parent to a toddler while having treatment for cancer.  As she points out, parenting and cancer can test our feelings of control – in both cases, we’re challenged to give in to what’s going on around us, whether we want to or not.

At Shine, we have lots of young adults who are both living with cancer and small children.  If you’d like to get in touch or discuss this blog, leave a comment, Tweet us, check out our Facebook group or follow us on Twitter. 

The Parent Trap: Living with Kids and Cancer

Guest blogger: Sam Reynolds

 

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We are respecting our parents’ wishes…..They didn’t want to shelter us from the world’s treacheries.  They wanted us to survive them.

― Lemony Snicket, The End

 My daughter was eighteen months when I was diagnosed with breast cancer for a second time. I always knew she was a miracle (doesn’t every mother?) but when this happened, I cherished her even more. They are incredible little human beings – but they are also not stupid.  How do you explain cancer to a child?

On Googling this topic recently I was slightly alarmed at how little information there was for newly diagnosed parents. The first page I found was a Cancer Research UK page that blatantly suggested that patients would have grown up kids or grandkids, not young children. It took me a few more searches until I found anything useful. A lot of the information was about children with cancer. I realised it was important to share personal experiences of living with kids and cancer because there doesn’t seem to be a huge amount of support out there, but it has a huge impact on people dealing with it.

It is impossible to keep your fear and stress a secret from kids.   At any age, they pick up on things. When I was first diagnosed, I wasn’t yet a parent.  When diagnosed again in 2012, my daughter was small but had a scarily good vocabulary; we immediately knew that we would have to give her a basic understanding of what was going on. Since the lump was in my clavicle, it was hard to hide the bandages after surgery; we called in an ‘ouch’.   We explained using Peppa Pig, her favourite show at the time, that Dr. Brown Bear was taking a bad bump out of Mummy’s neck and making her better. The radiotherapy schedule that followed was totally planned to fit in with her daily routine.  Every lunchtime I would put her down for a nap and a friend or family member would come and babysit for two hours while she slept and I dashed to the hospital.

I was worried about the impact all of this would have on her.  I realised we had obviously done an okay job when one day when we stopped outside the hospital where I had been treated. She asked me if this was hospital was where I got my ‘ouch’ fixed; I said yes. She then piped up, ‘I wish I could have an ouch one day so I could see Dr. Brown Bear’. My heart melted.

Earlier this year I was diagnosed for a third time; my daughter is eighteen months older but she is still incredibly young.   We have continued the ‘ouch’ phrasing – although this time the ouch was on Mummy’s boobies. We can only do what is right for her age. She will learn more as she matures, but she will always know.

The real test for me was during my stay in hospital for surgery. I was advised before the surgery not to invite her to see me. She would have been exposed to more than she could process and I would have been unable to hug and comfort her. It would be too traumatic. After the surgery, however, I was the one who felt like a child. When my mum came into see me I was very emotional and I felt like there was no way I could look after myself, let alone anyone else.  It frightened me how vulnerable and childlike I felt. I missed my daughter so much, yet the idea of being around an energetic, full-of-beans three year-old, scared me. I felt guilty. I wanted to be her mummy again but I had to put all my energy into healing and recovering without her and that was hard.

Recovering from surgery, going for treatment and living with cancer and all it’s appointments and side effects is massively demanding on anyone; as a parent it can seem doubly difficult. Trying to care for a child as well as yourself is a challenge.  On the one hand they are hugely helpful in maintaining some routine and distraction; on the other, it can become all consuming trying to make sure things are kept as normal for them as possible.  Both parenting and having a serious illness test the biggest control freaks among us; I find it an even more enormous test to just surrender at a time like this; to go with it and ride the wave.

It has been hard living with cancer and having a child though the healing that comes from the vitality, curiosity, adoration and innocence of having that little person growing up in front of me cannot be denied. Yes, at the end of a long day we can fall out; we are all tired and we are all emotional.  But tomorrow is a new day and to them, everything is forgotten.

When I was having radiotherapy two years ago it was my daughter’s second birthday. I remember thinking I must be mad to organise a two year-old’s party and to return from a 20th session of radiotherapy to entertain both children and parents.  Seeing the look of delight on her face when we brought out the cake and when we sang happy birthday…. nothing can replace those moments.  I wouldn’t let any cancer diagnosis ruin that for her, or for me.

Sam blogs regularly at samspaceblog.wordpress.com and tweets from @samboreynolds1.