This week is Cervical Cancer Awareness week so I thought I would tell my story again and how I ended up sitting in my sitting room writing about how I at 35 have terminal Cervical Cancer. I wrote the above last week but unfortunately I have been extremely unwell
I got my very first smear after my son Séamus was born in 2006 I was 20. Throughout college I got smear tests before I was part of the national screening programme which is from the age of 25. My grandmother passed away long before I was born of ovarian cancer so I was aware of it and took part in the screening program right up until diagnosis. One thing to note is that unless all your smears are done as part of the national screening program any results are not kept in the same location. For me this was important as I could not locate all my results as private ones were no longer available and I couldn’t locate everywhere I had them. So I would strongly suggest taking part in the national screening program or if going privately going to the same private practice. Also you should keep a copy of any reports, letters and or results you receive.
I want to explain what a smear test is and what is involved. When done in my GP’s I sat in the waiting room before being called up by the nurse. The nurse asked if I wanted anyone else present. My nurse was female but I do know my gp (male and female in my practice) always asked if I wanted someone present for anything that involved me being exposed. I didn’t need anyone but I know friends who prefer to have someone so do what makes you feel comfortable. There is no need to be embarrassed but it is totally understandable to have any emotions. The main thing is not to allow them to prevent you taking part in any program which can help prevent you getting cancer. In my case the nurse explained the tools used and what would happen, then gave me a minute to sit on the bed and cover myself. A tip would be to wear a large/long t-shirt. But again medical staff see all sorts of body bits, fluids types, hair, no hair.. so there is no need to be embarrassed but if you are just mention it and the doctor or nurse will take their time to explain what happens to you.
But you lie back on the bed put your heels together and bed your knees (there is usually some sheet/tissue to cover you), the nurse then inserts the speculum into your vagina and opens it, the nurse then uses a soft brush to take a small sample of your cells from your cervix. The nurse will close and remove the speculum and leave you to get dressed.
Anyway back to my story. I received many smears as is expected and back in 2017 I believe I was notified of suspicious smear results and I was treated/monitored for the following 18 months for CIN 3. On one occasion Lletz was not administered but if it was the likely hood is I would not be facing a terminal diagnosis today. Now I have summarised my experience and my outcome is not ideal however it is the screening program that did ultimately result in me being diagnosed with stage three cervical cancer back in December 2018. So I cannot urge women enough to partake in the national screening program.
To get in touch with the cervical check program call 1800 45 45 55 or visit https://www2.hse.ie/cervical-screening
So coming back to when I was diagnosed with stage three terminal cancer. I got the call on the 18th of December 2018 at 11 am. I was in work in Irish Life in Abbey St Dublin, so when they said they needed me to get the Louth County hospital in Dundalk for 1pm I kinda knew it wasn’t to tell me everything was going to be ok. So I got my brother Darragh who works and lives in Dundalk to meet me and come with me. (Poor Darragh had no clue what he was coming to). The doctor told me they had found cancer the previous week when I was brought in for a day procedure, which was a partial cervicectomy where they planned to remove a part of my cervix due to the persistent CIN 3. The day I attended, I haemorrhaged and they found a 5 cm tumour which they took a biopsy of. That day was terrible I insisted I was grand going for what was a common procedure. I waited all day to be brought in. I woke up with a catheter in my vagina, I had also been ‘packed’ (like wearing a giant nappy) and to be told I had haemorrhaged and they had found a tumour and that I was being moved by ambulance to the Lourdes Hospital in Drogheda. I was moved by ambulance and my parents met me in the Lourdes. I was told I needed an MRI but there was no slots available so I had to be kept in until one came. I remember the nurse telling me the doctor wanted the catheter removed by 9pm but she would do her best as she was worked off her feet. (After two years of a cancer treatment journey I am certain this is the worst experience I’ve ever had, I cried the entire time I was there and just said I was leaving after day two with or without an MRI, they got me an MRI) Anyway back to the cold December Wednesday I found out I had cancer. I then told my family and felt each and every one of their hearts break in half. There is literally nothing worse in this world then ruining the dreams of people, I fell I have done nothing for two years but tear my parents hope and dream go up into tiny pieces… From then it all moved so fast…. I met my oncologist on Christmas Eve in St Lukes hospital in Rathgar. My parents and my sister came with me. My dad couldn’t come into the Doctor with me. I think he hung around outside asking anybody for what was happening not to be happening. Inside my amazing Doctor confirmed that it was cancer, but they were optimistic that they could cure it. She confirmed I would need daily treatment for a 8 week period, that I would go into menopause, be unable to have any more children and possible have lifelong issues with incontinence. Weirdly enough it was the thought of shitting and wetting myself that I struggled most with… I was only 32.
I began treatment a few weeks later. I travelled to St Lukes on a Monday. Every Monday me, my mam and Séamus went for breakfast in the local cafe Forgefield. Then we dropped him to school and I went to St Lukes for the week. I am very fortunate that my parents life 2 miles away so Séamus was able to stay in his community. In Lukes I had radiotherapy everyday, chemotherapy every Wednesday then after 7 weeks I had a few sessions of internal radiotherapy (brachytherapy). My treatment was intense and over a shorter period of time than many other cancer treatments but it succeeded in nearly ruining me. It was much later and with a lot of counselling that what happened to me began to hit home, I’m not sure it has fully hit home or I’ve learned to live with it… who know? The rest of that year was tough, I was bridesmaid for my sister and best friend ten days apart. I had to reschedule Siobháin’s hen and I missed Elaines. I gave 110% at their weddings but I was still recovering so the energy just wasn’t there.
I didn’t rush back to work, in many support groups many people give returning to work to soon credit for worse side effect or ironically for me the cancer returning. My symptoms were by far not the worst but they were there. I was certainly not my usual energetic self I wet the bed ad hoc, my bladder certainly did not behave itself as much as previously and most of all I lost a bit of myself..confidence, ability, brain power, memory, understanding, anger management… My future imaginary family …..
But then early 2020 I joined a gym (would really recommend primal fitness) I started going to woman’s class I was loving it then COVID. But it didn’t stop me I took their daily classes online. I even got my sister’s friend Aisling to take part with me. I walked the dogs daily around the blog (5km). I was on FIRE! … and getting myself back..
Then I took a couple of days off and I couldn’t even do one burpee. I went to take the dogs for a walk on the beach with my son Séamus and I couldn’t call the dog. We walked about 50 yards but I couldn’t breath very well and I was in pain so we went back to the car. Séamus my 14 year old said ring the doctor mam. I don’t know if it was trying to keep him happy, because we were Crosby or really inside I knew… The gp sent me straight to A&E in the Lourdes.This was another less than delightful experience I got a new doctor who was sending me home because he ‘thought what was showing on the X-ray was nothing” but then I heard the consultant and him argue back and forth the other side of my curtain without any thought to me hearing them. The consultant won the argument and they said they wanted to refer me for an MRI but could send me home until a slot opened up. Now I personally know and LOVE so many wonderful people who work in the Lourdes and my sister is currently being treated like a queen in the Midwifery Led Unit so don’t think I hate the Lourdes. But the consistent thread in my experience is communication and some doctors lack ability to do so very well. But Hey! I will never understand the pressure they are under or work half as hard but as a patient understanding what is happening immediately lowers the level of fear.
I randomly days later had a phonemail appointment with my doctor in the Mater, (I had an appointment every three months post treatment) so she brought me up to the Mater for an MRI, then a bronchoscopy (camera down into the lungs) when they took a biopsy. It took two months to get the results. This was due to the special tests they had to run on the biopsy to see if it was the same cancer as before, cancer at all or maybe nothing 🙂
Two months later I got an appointment in the gynecologic oncology unit. My sister and my best friend Elaine came with me. This was in the height of lockdown so the fact I was told to bring someone kinda suggested the news was not good. Elaine waited in the car. Siobháin came with me. When we went into the room and there was the doctor and two nurses, and they told us it was cancer, the same cancer as before, it was aggressive, It was in the lungs, there was a query over my hip and my spine.
Siobháin who at the time was four months pregnant was devastated understandably but had the sense to ask few questions like what was the prognosis, how long, what was the plan. They confirmed at this stage they don’t talk about curing the cancer but controlling it (this broke me inside), they don’t have a timeline but hoped not weeks. All I could think of is Séamus, a soon to be orphan apparently. We both left knowing very little but with an appointment the following week. Outside Elaine waited still with hope, I felt her heart break a little when I broke the news. We left Dublin in pieces, it was a VERY quiet drive home with some awkward laughter moment because nobody knew what to do. I called my other siblings told them to make their way home to my folks where we went. I laid it out for them and for the second time I broke their heart and aged them years in moments.
The following weeks appointment confirmed what drugs I was going to be given and I was booked in to start chemo the following Thursday as there was a cancelation. (Otherwise the wait was 4 – 6 weeks) I went home with a book size of of information about wigs, talking to children about cancer, leaflets about my chemo, side effects, living with cancer, loosing my hair and many many more.
For this time I told family and friend what was happening and I was surrounded by love support from every area of my life. Every text message, prayer cards, called, online comments & messages, present and notes continue to meant the world to me and lift me up in my darkest moment.
8th October 2020 myself and Siobhåin headed up for my first round of chemotherapy. We had a bag that Mary popguns would envy full of everything we might need. I only speak for myself but I don’t think I fully got ‘it’ until the needle was inserted in my vein and the chemo put in the drip. It has been nearly four months since I started Chemo. I do three week on one week off. I get two drugs for chemotherapy taxol and carboplatin, Neulasta to help boost my white blood cella and Zometa a bone stronger as I am at risk of brittle bones. In the last four months I have lost my hair (First I dyed it illuminous pink and purple, cut it into a bob), I learnt cancer is in my hip and T-spine. I take a lot of drugs to help with nausea and pain but they also have side effects like memory loss. I have issue with diarrhoea, constipation, nausea, vomiting, I have no energy and I constantly feel like I just got hit by a bus but more than anything the pain is bad. Last week I had a high dose of radiotherapy and I hope it helps soon.
I am very fortunate have a member of my family or best friend Elaine stay with me constantly on interchanging nights. Sometimes I don’t need to be minded but I can’t risk it and leave it to Séamus my 14 year old son. Also Siobháin and Elaine could give birth any day now so they visit me regularly but can’t stay over understandably. As a single parent it is difficult as I still want to parent when the majority of the time I can’t mind myself. With the help of the go fund me page I have managed to hire a regular cleaner and can when the time comes hire private care to help with the burden on my family. I’m not sure how people cope normally like everything access to information and services is restricted to just life saving due to covid I hope to meet the social worker soon.
I realise nobody minds helping my but Cancer already robs so much I HATE taking everyone’s day off work, free time and making them do all the heavy lifting in my house as well as running their own. The most difficult thing about this whole terminal cancer thing is Séamus. July 2017 I sat on the sofa and told him his dad had passed away, January 2019 I sat on the sofa and told him I had cancer, January 2020 I got a new sofa 🙂 unfortunately September 2020 I told him I had cancer and it can’t be cured. For the most part Séamus is great but you know he is a fourteen year old boy, during covid with a dying mam, So all considered he is doing amazing.
As we try move forward we take it day by day and try to plan things for when covid allows us. I just hope covid gets under control intake for me to live a little before I can’t. A couple of weeks ago I got the good news the my cancer was reacting favourably to treatment and they plan to continue treatment. This is the best news for me although it probably doesn’t sound like much to you. I pray this continues as the alternative is a new roll of the dice and a search for a drug trial.
That is my story about how cancer steals everything. Don’t let it take you. Partake in screening programs – smears, mammograms, bowl… take vaccines, give your children vaccines. If you feel a lump, change in discharge, change in size, notice a change in your body get checked, ask an expert, visit your doctor most likely it is nothing, but what’s the harm in asking?? Be safe protect your family protect yourself.
Any questions please ask..
Eileen R firstname.lastname@example.org