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Opinion: 'At 27, with no children, cystic fibrosis and now cervical cancer - my world crumbled'

Aoife Rafter details how her CF and a cancer diagnosis have brought her to a place of gratitude and resilience.

Aoife Rafter

AFTER MY TRAVELS around the east coast of Australia in 2017, I set myself up in Bondi Beach, working casual temp jobs. How I loved the Bondi lifestyle. It was all I had dreamt of and more.

A dry climate ideal for my cystic fibrosis.

Salt air could be inhaled from my balcony door to dry up my chest from any dirty mucus. Stunning steep-hilled coastal walks, healthy cafes, not to mention numerous gyms and Pilates studios.

4. Aoife Rafter Source: Aoife Rafter

This was my new home for the next few months. It almost felt too good to be true and, unfortunately, that it was.

Regulations

Soon my world was completely turned upside down. Due to new regulations back in Ireland, I could no longer access my miracle drug – Kalydeco/Ivacaftor – abroad as I would now be required to come home to have monthly check-ups at my CF clinic for it to be prescribed.

I became so ill from all of the stress that this brought on that I ended up being hospitalised in Sydney. But I knew my body. I felt that there was something even more sinister going on. I attended my GP for a smear test, even though I had one the previous year.

As I became increasingly lethargic and overwhelmed by what was going on in relation to accessing my drugs, I realised the universe was trying to tell me something. It was time to pack up and go home. It broke my heart to leave this beautiful lifestyle and all of the wonderful friends I had made.

I made contact with my cystic fibrosis team back home and arranged a scheduled admission the day I landed. I couldn’t quite wrap my head around it all. But the universe wasn’t finished shifting my path just yet.

More tough news

After reuniting with family on the morning of my return, I opened my emails to discover a letter from my gynaecologist in Sydney.

She diagnosed me with a 1B1 cancerous tumour in my cervix. At 27 years of age, no children, cystic fibrosis, and now cervical cancer. My world crumbled. My heart raced. And my throat became raw from the sounds that my vocal cords made. I was broken.

My CF team quickly set me up with an oncology consultant. The treatment plan involved a radical hysterectomy that would remove everything apart from my ovaries. I could never become pregnant or naturally conceive a child.

3. Aoife Rafter Source: Aoife Rafter

I had no time to catch my breath. It was all systems go. I was consistently in and out of hospital attending the oncology and cystic fibrosis clinics for months.

Thankfully, my surgery was successful. The next course of action was 25 sessions of pelvic radiotherapy that Christmas. This came with side effects. So far, the main villain has been early menopause. I have been experiencing hot flushes and awfully low moods from the change in my hormones since I turned 28 in 2020.

Best of care

But when these side effects feel like they are all too much and completely unfair, I focus on what could have been if I didn’t listen to my body or have access to the thorough healthcare and amazing doctors that I did.

Once the radiotherapy had finished, I was ready to take life by the horns and show my gratitude for being alive. But, yet again, with the arrival of Covid-19, the universe was not finished teaching me (and humanity in general) a few tough lessons!

I cocooned for the guts of two years in my bedroom in Kildare. I ate separately from my family. I didn’t see my new boyfriend for four months. And, most importantly, I missed oncology and CF appointments due to outbreaks of Covid-19 in the hospitals.

Naturally, my mental health rapidly declined. The changes in my hormones due to the progression of menopause had a profound negative effect on this too. Unfortunately, I even attempted to act on some suicidal thoughts.

Thankfully, my resilience, a daily anti-depressant, various holistic therapies, lots of cuddles from my four-legged fur baby, Brax, my CF psychologist, the support of loved ones, and falling in love with a Wexford man, have kept me going!

6. Aoife Rafter and Brax Source: Aoife Rafter

I’m sure that I will still feel some level of anxiety going forward in a world where Covid still exists but restrictions do not. However, I’ve learned that focussing on the parts of life that I cannot control won’t serve me well.

Self-care

All any of us can do is concentrate on how we can keep ourselves healthy and safe. For me, that will include risk-assessing events that are overcrowded, wearing masks in busy places and on public transport, and taking part in lots of things that boost my immune system such as acupuncture, sea swimming, reflexology, yoga and other regular exercises.

Now, living in the sunny southeast, I’m just a five-minute walk from the seaside. I have qualified as a reflexologist. I am training as a Breathwork coach. I use my platform on Instagram to act as a patient advocate. I have become a regular health and wellness writer and will soon be launching a podcast.

People often think I’m crazy when I explain that I’m so lucky to have gone through all that I have. But I am. I’m here to tell the tale and to have the opportunity to use such a traumatic experience in a positive way. I’ve documented my journey with CF on Instagram for years, and my cervical cancer journey and recovery have been no different.

I find solace and gratitude in the connections I have made online. It has helped me to find my purpose in life through helping others. It is both my pleasure and my duty to advocate for such issues, to encourage others to go for their health screenings and to become more in tune with their bodies. Knowledge is power.

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Aoife Rafter is an ambassador for Cystic Fibrosis Ireland’s 65 Roses Day taking place on Friday 8 April. Please support by taking part in a 65 Roses Challenge, donating online at www.65Roses.ie or purchasing a purple rose in participating Dunnes Stores, shopping centres and other outlets nationwide.

You can keep up to date with Aoife’s journey on Instagram @aoife.p.r and at www.aoifepr.com.

***

If you need to talk, contact:

  • Samaritans 116 123 or email jo@samaritans.org
  • National Suicide Helpline 1800 247 247 – (suicide prevention, self-harm, bereavement)
  • Aware 1800 80 48 48 (depression, anxiety)
  • Pieta House 01 601 0000 or email mary@pieta.ie
  • Teen-Line Ireland 1800 833 634 (for ages 13 to 19)
  • Childline 1800 66 66 66 (for under 18s)

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Aoife Rafter

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