As cancer outcomes improve, there has been a slew of stories from survivors who refuse to let cancer grind them down. Unfortunately, it does grind down tens of thousands of people including Maria Woulfe, who carries the BRCA2 gene and lost her mother and cousin to the gene
Not many stories are published about the harsh, grim facts about cancer and what it robs from your life. Well I don’t even know where to begin with my bullshit cancer story. I despise this word, this disease, this disgusting insidious thing that has robbed me, my husband and my family of so much. All I know is that I’m sitting here in my kitchen after having our Sunday roast dinner and my beautiful mam is not here to enjoy it with us. She has lost her “battle” only weeks ago.
In January 2011, my beautiful little boy, Colm was born just one day after my mam’s 58th birthday. Life was bliss, it was utterly normal, we were a happy 30-something year old couple with a little bundle of joy. Despite the downturn in the economy where my husband’s work as a carpenter/joinery business had ceased, we were very hopeful we would be ok. I was a primary school teacher and had a steady wage coming in at least and I knew my husband would do something as he always had a strong work ethic.
A holiday to Spain just after my 30th birthday (partially funded by my family and in-laws) was the beginning of “Armageddon” . As I lay in a sweltering apartment one night, I felt a tightening and lump under my right breast. I told my husband the following day. He touched it and and replied, “whatever about that lump, what about what’s in the middle of your boob”. I calmy replied, “ Oh that’s from just the breastfeeding”, not having a clue that the lump that I had felt and the thickened mass inside my breast were related. Over the holiday, I began to wonder about my cousin, Ruth who was 33 and had been diagnosed with breast cancer just 10 months previously. I couldn’t wait to get home to see my GP.
Two weeks later I was at the Regional Hospital in Limerick. I started off full of optimism but as the nurses were putting their arms around me, saying, “you’ve had an awful morning, haven’t you” and I was brought to a room with tea/coffee and cute little pictures on the wall, I knew I was in trouble.
When my breast consultant entered the little room, my diagnosis was etched all over her face. I cried and bawled and asked the most ridiculous of questions. I do remember, however, being told that we wouldn’t be able to have any more children and was absolutely gutted. I came home that day into the conservatory of my mother’s house where she had been minding my five-month-old son. My mother and father just broke down before me.
I used to speak with my cousin Ruth who by now had finished her treatment and was to be my inspiration. My mam however was distraught as I was her only girl and the youngest of the family.
I could relate as a new mother to this because I kept thinking if anything had happened to Colm, I’d never be able to cope. The summer of 2011 passed by with a blur of hospital appointments, scans, mastectomy and a diagnosis of stage 3 breast cancer.
My mam, God love her, had been hit hard and didn’t even have the strength to accompany me to shave my head once the chemo had started. After my first chemo session, I was so sick. This medicine was pure poison and I couldn’t seem to get the sickness under control. The steroids, anti-sickness tablets, lack of sleep along with the feelings of isolation and of being attacked physically with this cancer were brutal. One afternoon while my mam was helping me look after Colm, she told me she’d been having pains like ovulation cramps. She’d had some scans done and she needed a hysterectomy as she had a cyst in her ovaries. I blurted out, “Could it be cancerous?”, she broke down and replied, “they don’t know for sure”. Without me even knowing words had escaped my mouth, “Mam, I think I remember reading that breast cancer and ovarian cancer are linked”, and apologised profusely for saying it.
Meanwhile I went down to get my chemo in Limerick with my husband and my dad brought my mam to Cork for her hysterectomy. I rang that afternoon to see how the operation had went. ”She’s feeling very low,” dad said. He couldn’t bring himself to tell me that mam had been diagnosed with stage 3 ovarian cancer. There are simply no words to describe how I felt or my family felt. It was sheer and utter devastation. The following morning, sick as I was and with no hair, I insisted my husband drive me up to see my mam in the hospital. It was nothing short of horrific. My poor mam’s resilience had been wiped out in a matter of three months. At this stage, all of our consultants were pointing to a genetic link.
In the following weeks, mam transferred her care to Limerick so we could travel together to get chemo together. Here was my dad in the day unit with his 30-year-old daughter on one side and his wife on the other. People’s faces told it all when we said we were mother and daughter. We were chemo buddies. It was so wrong that here was her youngest child explaining the process of getting chemotherapy, how they’d first take some bloods, see the doctor, how the cannula worked and how it the anti-sickness and the chemo drugs were given intravenously.
However, the most awful twist to this story was when mam was told that this cancer was going to keep coming back and that the chemo may not even work. In my naivety, I thought we’d get our treatment and sail off into the sunset. We were so naive about cancer back then, thinking that if only she got breast cancer instead because that was “okay”, “you’d come back from breast cancer”.
Our treatment ended within one week of each other and although she responded positively to the treatment, the cancer hadn’t fully gone. The spring of 2012 had some semblance of new beginnings as we tried to pick up our shattered lives and move on. We all knew for my mam however it was different. Then just a few months later during the summer of 2012, my darling cousin Ruth got the devastating news that her cancer had returned and it was not treatable. It was in her bones and her vertebrae had collapsed. She was 36 years old with two daughters aged 6 and 4.
During the autumn of that year, we were diagnosed as having the BRCA2 gene. More devastation. Life turned back to hospital appointments again, speaking with oncologists about my options. I knew what lay ahead was another mastectomy, ovary removal and all along knowing and waiting for my mam and my cousin to be slowly and ruthlessly taken over by this disease. I went back to school that September and started a new post as a resource teacher and my husband was working and studying engineering full time with the Open University. We were trying to get on with life as best we could.
A little torch of hope was lit however when the oncologist/geneticist told me that new research was showing that when I was five years clear and after five years on Tamoxifen, it was safe to get pregnant. My husband and I held onto this little glimmer of light which was so symbolic of some normality being restored, this hope that we could have a sibling for Colm.
“Oh sure, you’re lucky, you have one, some people can’t have any,” people say. Well piss off! I don’t think there are others who have to deal with all of this other crap too. I was robbed of so much and now my fertility too. We had a plan, my ovaries would be taken out in my late 30s. I knew it seemed too good to be true though. The summer of 2013, I was back in patient mode once again, I had my second mastectomy and a double reconstruction. This time, I really couldn’t cope, it had all been too much, two years of non-stop “devastations”. The healing broke down completely and it took five months for my wound in my back to heal. Afterwards, my mam, my little boy and I headed for Lanzarote to enjoy a long deserved break from cancer/gene/operation/hospital crap. We had an amazing week but normality was short lived when my mam fell ill a few weeks after returning home and in true “mammy style”, she covered it up in the weeks coming up to Christmas. We all pretended that everything was ok, as all she wanted was a “normal” Christmas day. On St Stephen’s day, I confronted her. She admitted that she was going back on chemo again. Over the Christmas period, she was in and out of hospital as she couldn’t eat. She was so vulnerable in hospital, she couldn’t hold down water or food and her oncologist admonished her at her bedside for not taking her anti-sickness tablets.
On New Year’ Eve, in the oncology ward he said,“you know you’re in here more times than you’re at home, what do you want? If it’s chemo you want, I’ll give it to you but you do know this may not work”.
My mam rang me and told me of this and said “get me out of here”. Here was Mam without a consultant, without chemo’ and the cancer was back. Luckily the gynaecologist who performed Mam’s hysterectomy, Dr Coulter was such a caring man, he immediately saw the distress she was in and moved our care to Cork. This man was her beacon of hope, she placed full trust in him and Professor O’ Reilly. Under Prof’ O’Reilly’s care, she had a phenomenal response after a few months of chemo. We had a fabulous holiday together in Barcelona in the summer of 2014, Mam was in great form. However, we both knew she was living on borrowed time.
Our joy was shortlived. At the beginning of October, my cousin Ruth slipped into a coma in hospital. It was only going to be a matter of time.
Meanwhile, Mam was getting some “niggles” as she called them and sure enough her fears were confirmed, her cancer had reared its ugly head again. The morning after she received that news, she rang me to tell me that Ruth had passed away in her home. We all went to my uncle’s house in Waterford which was the saddest and strangest of family occasions.
Here we were united in the grief and the black cloud of cancer permeated through the air. My husband was crying because he felt so much for her husband, my mam was crying for her niece, mam was also thinking this could be her own daughter (my funeral) as well as knowing the next family funeral would be hers.
In January of this year, we all had a lovely family holiday in Lanzarote with my brothers, sisters in law and grandkids. We knew we had a tough road ahead.
All along my mam kept news of her illness to herself, she hated sympathy and the standard head tilt, “how are you feeling?”. Mam had to change her chemo regimen a few times since Christmas but all along she worked as a clerical officer four days per week right throughout her treatment and nobody at work knew the extent of this disease.
At the end of July just gone, I went to see my oncologist/geneticist Prof Gallagher in Dublin to confirm that we wanted to add to our family next year. I went on my own thinking I’d have a lovely day in Dublin shopping afterwards. Little did I know. Instead, I was told that new research was finding that survival outcomes were higher for women who took Tamoxifen for 10 years.
I couldn’t quite comprehend what he was saying, he had to spell out for me that I’d be taking a risk getting pregnant and, not only that but, survival outcomes again are higher for those who are menopausal.
He advised in a gentle way that I try to get my head around having my ovaries removed in the coming months. I couldn’t even ring my husband, as his grandmother was dying in Cork. I wandered around the streets aimlessly and rang my mom bawling that our hopes had been dashed, it felt the cancer had come back to rob us of normality and a sibling for Colm. That evening, my husband and I bawled.
The following morning Glenn’s granny died so without any time to digest, we headed for Cork to be with Glenn’s family. That same week, mam admitted that she hadn’t been felling too well, she was getting shooting pains down her leg, and was worried that the cancer was on the move.
She once again was admitted to hospital and her chemo had changed but within two weeks, it emerged that the cancer had taken an aggressive hold. She was weak, very weak and was in an awful uncomfortable condition with the build up of fluid. Her kidneys were starting to shut down. On Sunday morning, 23 August, I was called into a nicely decorated family room with comfortable couches and serene looking pictures on the wall by the oncologist on duty. It was too familiar, my mam wasn’t going to pull through. All they could do was make her comfortable. My mam was told the following morning that she was gravely ill and that they couldn’t do any more. The moment we were all waiting for four years.
Professor O’ Reilly stood there with liaison nurse, Eileen Kennedy and answered her questions with such compassion. She simply asked, “Am I going to die”? , he replied, “ I’m afraid so, Brigid”. She turned to face us, her children, “I’ve fought ‘til the bitter end, what more can I do?”. I was sobbing uncontrollably. I was going to lose by mother and best friend.
Mam passed away the following evening in Marymount Hospice wearing a pyjama top we picked up for her by accident with the slogan, “ I’d rather be somewhere else, there’s nothing like having adventure anywhere”, which so seemed to suit her personality.
So here I am, the only one left of the three of us and facing down the barrel of a hysterectomy oh but wait, shouldn’t I be saying, “Oh I’m so lucky to be alive”, “sure I’m so lucky to have one child”, “sure, it’s only breast cancer”.
I’ve lost my mam, my cousin, my breasts, my fertility, I’m menopausal at 34, and the fear of this disease never leaving me is an everyday reality. When people say that cancer is a wake up call, it makes me want to scream! Anybody who knows me, know that I’m a positive, larger than life person. I love life and make the most of everything but cancer is not a wake-up call. It’s not a positive thing in my life or in my family’s life. I really want to highlight to the media that stories of fear, hardship, sickness and financial troubles all accompany you on a cancer journey. Cancer robs you of so much so why are these stories never printed about how truly awful and horrible cancer really is?
Perhaps the most difficult part of my treatment was reading survivor stories that cancer wasn’t all that bad, they used to make me feel even worse. Was I a failure because I couldn’t cope with the nausea, hair loss, night sweats? That I couldn’t cope with being robbed of my first year with my baby and that all through it I prayed and hoped that my mam’s chemo would work?
I have no doubt I’ll get over this eventually, the fear will be less intense between hospital appointments and check-ups but that black cloud will always remain for my husband, dad and brothers. We have lost so much, most importantly, our beautiful and amazing mother.
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