Cancer and Covid-19: “I finished radiotherapy in January. I haven’t seen a doctor since February”

I feel disrespected, forgotten about and more vulnerable than ever before… Aoife P. Rafter on the impact Covid-19 has had on cancer care and her three-month (and counting) wait for a follow-up test 

I was diagnosed with cervical cancer on 24th June 2019, at age 27. 

What a strange 12 months that’s been. For the most part, it was spent running between 7 different clinics in 4 different hospitals. Oncology in St. Vincent’s, IVF treatment in the Rotunda, radiotherapy in St. James’s, gynaecology in St. Luke’s and St. Vincent’s, not to mention my regular clinics pre-cancer for my chronic lung disease cystic fibrosis, hepatology and ENT.

Sometimes seeing all that written out makes me laugh. But only because I’m sick of crying. 

I’m tired, I’m fatigued, and I’m frustrated at my current reality. I truly thought the biggest fight of my life was behind me, alas, here we are, at what appears to be the end of a pandemic. Yet I can’t access any of these outpatient clinics.

I see all of my friends and family move on with their lives, while I approach my 15th week of cocooning. As we are “learning to live alongside this virus” (to quote our Taoiseach), I see high street shops such as Penneys re-open, McDonald’s and the likes too.

I read of plans to re-open the pubs, restaurants, bookies and hairdressers in the coming weeks also. I receive spam email from Ryanair advertising holidays abroad for the end of the summer. All of life’s luxuries returning to those who aren’t financially crippled from Covid, and can still avail of them. 

However, I cannot and have not attended any of my seven clinics in over three months now, with no plan in sight for them to return. Nor have I received any follow-up tests or examinations due to this deadly virus.

It appears that our healthcare system is the last thing to be addressed, pushed to the bottom of our priority list, yet again. It seems we have learned nothing from the CervicalCheck scandal a mere three years ago. 

 

View this post on Instagram

 

February 4th is World Cancer Day ??? . . I took this first photo the night after my radical hysterectomy. I had just finished sobbing and snotting into my Lion King Teddy, as I grieved for all that I had physically lost that week ? . . It’s been a long and trying 7 months since my Cervical Cancer diagnosis. 4 weeks of IVF injections, several hospitalisations, a copious amount of outpatient visits, 25 radiotherapy sessions, and all of the wonderful side effects that are trying to kick my ass ?? . . Every single day I struggle both physically and mentally. But these pictures keeps me in check. It reminds me of how far I’ve come, how strong I can be when I have no choice but to be, how loved I am, what and who I have to be grateful for (doggos included of course ??), and that I just never know what’s around the corner for me ?? . . Over 40,000 people are diagnosed with Cancer every year in Ireland. That’s 150 people a day. 1 person every 3 minutes. ?? But so many of these cases are preventable, in fact 4 out of 10 of them are preventable! ?? -Not smoking -Watching our alcohol intake -Eating a balanced and healthy diet -Regular exercise -Keeping up to date with your health screenings -Learning and using useful tools such as mindfulness to control our stress levels . . I’ve said it once and I’ll say it again, we have one precious life. Use it wisely. Take care of your body and your MIND?? ? If you feel you could work on some of the above preventatives, (I know I could! ?) then NOW is the time! Lets do it together! ?? . . #beatingcancer #cervicalcancer #mindbodyspirit #worldcancerday #ivf #curecancer

A post shared by Aoife P. Rafter (@aoife.p.r) on Feb 4, 2020 at 1:21pm PST

Before my world was turned on its head, I worked as a social care worker for four years. I graduated with a First Class Honours in my degree in TU Dublin, one of the proudest days of my life.

As part of this degree, we completed 3-4 psychology modules. I distinctly remember reading a quote from Mahatma Gandhi that read, “the true measure of any society can be found in how they treat their most vulnerable”. 

I was so proud of our government when they decided to force a strict lockdown during this pandemic in order to protect our most vulnerable. I felt so grateful to those who adhered to the lockdown guidelines so that they could protect people like me. Imagine that, complete strangers putting their lives on hold for little old me. There is great power in that. 

How can we be forgotten about so quickly? Have we really not learned anything from this life-altering experience?

However, it seems that there has been a great shift in this attitude as of late. We have all been following the roadmap for re-opening the economy and society very closely since it was released several weeks ago. Yet no one has highlighted that there is no mention of re-opening the healthcare system in any of the four phases.

Is this not completely contradictory to the entire point of enduring the lockdown? How can we be forgotten about so quickly? Have we really not learned anything from this life-altering experience?

I was led to believe that we all had the same objective, keeping our most vulnerable at the top of our priority list, yet I have not had access to any of the essential healthcare that I need.

I have documented my health journey on my Instagram account, where I have connected with dozens of other vulnerable people who share these same concerns, many who have worse stories to tell than I do.

Some have chronic illnesses who have explained that their conditions have worsened and, in some instances, are even experiencing disease progression as a repercussion of not receiving their usual care from their medical teams.

Many, so very many, are waiting for screenings and biopsies that they were promised months ago

Others have had their chemotherapy and other oncology treatment plans altered or ceased altogether. Many, so very many, are waiting for screenings and biopsies that they were promised months ago. 

I can tell you, that after everything I’ve been through the past 12 months, cocooning for 15 weeks has been the toughest by a long shot. It has taken so much dedication to keep my mental and physical health in check, without the usual support of my medical teams.

It has been heartbreaking being apart from my family, friends and boyfriend for such an extended period. It has been an emotional rollercoaster full of tears and breakdowns, learning how to comfort myself when it wasn’t safe enough to receive an embrace from my own mother or sisters. 

But it has been most disturbing to learn that our leaders and the HSE have chosen to ignore our cries for communication and insight on the re-opening of our healthcare system. I feel disrespected, forgotten about and more vulnerable than ever before.

I’m a 28-year-old woman who loves all things ‘girlie’ and spiritual. I too love shopping, getting my hair and nails done, travelling and exploring new destinations and getting all glammed up for a ‘bottomless brunch’ in Naas with all my gals. 

I don’t want to have to advocate for myself and others, especially at a time where I should be resting and recuperating from my oncology treatment and the trauma that it has caused me. I didn’t choose this life and reality, perhaps it chose me.

It is much easier being ignorant to the troubles of others and focussing on the finer things in life, I get it, I know it. I was that person too for a brief period of my life. But I learned that it’s not self-serving. That’s not what life is about.

It’s about human connection, compassion, kindness and love. It’s about ensuring you are remembered for the right reasons, leaving a legacy of good value behind you. It’s about using your voice to speak up when others do not have the health, energy or voice to do so themselves. It’s about showing respect and care to our most vulnerable members of society. 

Whether you are a leader or a follower, your voice alone holds great power, so please, use it. Help us, the vulnerable, to obtain the answers and insights on re-opening the healthcare system as the main priority of this society, not the last one.

Aoife is a CF patient ambassador. You can find her on Instagram.

This article was originally published on June 22nd. 

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