Infertility after cancer: It’s a lifelong loss that needs to be grieved, just the same as the death of a loved-one

Anne Nally knows the devastating psychological impact of a gynaecological cancer diagnosis all too well. As a result, she got involved in the development of an online platform (thisisgo.ie) for women facing this type of cancer so nobody else would ever have to go through what she went endured.

nne was 29 weeks pregnant with her first baby when she was diagnosed with cervical cancer. After the birth of her son Colin she had to go for intensive treatment which left her unable to have any more children. Almost a decade later, at the age of 39, Anne knows that if she had been pointed in the right direction of services at the time, it may have resulted in less pain for her and her family.

After the treatment for cancer ended, she was plunged into early menopause which spelled the end of her fertility. This was not the plan. She and husband Johnathan had both wanted two or three children. Anne’s cancer diagnosis and subsequent treatment meant dealing with the devastation of never being able to give Colin (9) a sibling, and feeling the pain of loss as their friends added to their own families.

“It took a toll on our marriage. When we were told the news we were focused on the baby being ok. We knew this baby would be our only child. Emotions were high and fear was huge,” says Anne who lives with her family outside Athlone in Co Westmeath.

After the treatment ended, Anne says she grappled with feelings of anger and grief. Even someone talking about a new baby would make her cry. “It was a daily battle. I knew I could never expand my family. I felt less of a woman not to be able to do this again. I still have those same emotions but I learned to manage them better. We’ll always grieve what we cannot have,” she says. She recalls that she left hospital with the words ‘get on with your life’ ringing in her ears and no support and no offer of anyone to speak to.

She found a supportive counsellor on her own and she and Jonathan sought help to deal with their grief and hurt. Counselling also gave her the language to help explain to family and friends and later to Colin what had happened.

“We didn’t have anyone to turn to. There was no platform or anyone to link in with. I had two very good supportive friends and their husbands who got us through a lot of issues. They continued their families and that was a tough road, but they were very understanding. We share a lot together, including the kids,” says Anne.

One of the issues she feels passionate about is that no woman should ever have to go through what she went through in the wake of a cervical cancer diagnosis. Good, evidence-based information, advice and helpful resources would have made all the difference to her at a particularly difficult time in her life.

It’s why she wanted to get involved in the development of a one-stop shop for women who find themselves with a gynaecological cancer diagnosis. And her insight, from the perspective of a woman who has been down this road, has fed into the development of the platform.

“People said to me, ‘have you not got enough on your plate?’ but my aim when I got involved with this project was if I could help one or two or three women I would do everything I could to help them. As my mother would say: ‘prevention is better than the cure’. I battled depression, grief and loss. If you can catch it at an earlier stage it improves the quality of your life,” she explains.

“Women are going to face this. We have to be realistic. Some people are not ok. Some people may not reach full life expectancy. But if you can make things better and there’s a network of people to turn to, you can provide the right direction at the right time. If you can catch people at an early stage, it saves years of pain,” she adds.

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Psychotherapist Yvonne O’Meara

Psychotherapist Yvonne O’Meara

Thisisgo.ie is being launched to coincide with World Gynaecological Oncology Day (GO Day). Developed by Professor Donal Brennan and psychotherapist Yvonne O’Meara in association with the Irish Cancer Society and UCD, the platform is dealing with cervical cancer in the first phase of its roll out, covering every stage of the patient’s journey.

There are simple explanations on the stages of cancer and treatment, resources on physical and emotional wellbeing, dealing with debilitating side effects, and practical advice that’s often overlooked liked preparing for hospital or talking to kids about cancer.

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Anne Nally has helped develop thisisgo.ie

Anne Nally has helped develop thisisgo.ie

Anne Nally has helped develop thisisgo.ie

According to O’Meara, the platform was developed because there was such a dearth of information in the first place. O’Meara explains that a gynaecological cancer diagnosis profoundly impacts a woman physically and emotionally. It also has repercussions for her intimate life because a very high percentage of women who have a diagnosis of this cancer will suffer from a sexual dysfunction.

While she describes all cancers as relationship diseases, impacting on the loved ones of the person diagnosed, this is especially true of gynaecological cancers. This is why communication, not only between patient and physician is important, but also between the woman and her partner, she says.

She cites a World Health Organisation study which showed that doctors treating women for gynaecological cancer were not asking them about their psychosexual health, leaving women at a loss to navigate this part of their cancer journey. “Doctors need to bring it into the room and women need to talk about it,” she says.

Some cancer treatment can result in premature menopause which can cause vaginal atrophy — a thinning, drying, and inflammation of the vaginal walls when your body has less oestrogen. This can cause pain when it comes to sexual closeness or a gynaecological examination. Treatment can also lead to an abrupt end to a woman’s fertility. Whatever stage they’re at, O’Meara emphasises the importance of good communication and clear information to help a woman navigate this difficult time.

“It’s really important for a woman’s partner to know there are people for them to talk to. The partners are often the silent patients and often there’s no space for them to talk. We know that working with couples is hugely effective.

“The option to talk to someone should be available to everyone,” she says.

She explains that it’s really in the ‘survivorship’ phase in the aftermath of treatment that women want to engage in talk therapy. “When the crisis period is over that’s when people say ‘I can breathe’ but cancer has left its mark”.

Because treatment can mean an abrupt end to a woman’s fertility, this puts its own pressure on couples who have to find a way forward in the new reality of a life without children or a family that didn’t look like the one they planned.

“There is a loss that needs to be grieved. It can be a life-long loss. It’s something that needs to be grieved just the same as the death of a loved-one,” O’Meara says.

Other kinds of losses including physical changes arising from cancer treatment also have to be acknowledged and O’Meara points out that loss and cancer go hand in hand.

Weight gain, weight loss and lymphedema — the abnormal build-up of fluid which can occur when lymph nodes are removed — are also potential side effects of treatment that can have a profound effect on women’s lives, she says.

But she points out that none of these things are insurmountable and with the right knowledge and direction women can navigate the stages of their cancer journey without spending hours of time stressing about trying to get the right information.

O’Meara says: “I’m humbled on a daily basis by how resilient women can be in the face of such adversity in their lives. I have seen women do extraordinary things given the complexity of what they have endured. I have seen women and their partners renegotiate their relationship and their sexual intimacy. They say, ‘it’s not the old norm we’ve had, it’s the new norm or the new norm is better than what we had’.

“For those who are single, don’t underestimate your potential partner’s ability to navigate a relationship with someone who has been through cancer treatment. There are people who are able to hold that space for someone.

“People are very worried about new relationships. Everybody has baggage. The older you get the bag gets fuller. The key is not to let it be all of your backpack.”

For someone worried about telling a potential partner about their cancer treatment and how it’s impacted them, O’Meara advises people to err on the side of honesty.

“If you feel that the relationship has potential, you’re halfway there. I would suggest taking the chance of telling them what part of you has been impacted by cancer.

“Some of the scars are invisible and some are not. It’s part of you, it’s not all of you. If they are not prepared to walk forwards as a result of what you’ve said, what a lucky escape you’ve had.

“If someone leaves you because you may want to take it slower because sex is a bit painful, what the hell. Who wants someone like that around? You want someone who is compassionate and caring who is willing to take the next step with you.”

For help and information on cervical cancer visit thissgo.ie, developed through the Irish Cancer Society’s Women’s Health Initiative with support from University College Dublin and Pfizer