Surviving the S**t Storm…

A really honest and raw account of going through cancer whilst supporting a disabled child. It’s a long one so maybe put the kettle on first. It may not be the worst experience but it’s my experience.
If you need help;
https://www.mind.org.uk/
https://www.jostrust.org.uk/
https://contact.org.uk/

As we reach hump day of a really important awareness week for me, I wanted to share my story as a Carer who has been through cervical cancer.

Just looking at the word cancer makes my blood run cold and feel a bit sick. I have shared parts of this journey before, so sorry if I am repeating myself, but it’s a tough one to relive.

In September 2014 we made the decision to leave our beautiful home in Brislington and move to Pill to be closer to family as we raised Edith. By December the house was sold and we had bought one right next door to my lovely Aunty and Uncle. My Aunty was already looking after Edith when I returned to work in the November and to have her just next door was going to make life a lot easier. At the time I was managing a dental practice in Portishead; a job I loved and had worked my way up in over the last 5 years. I worked for two lovely guys who had been incredibly supportive in my return to work after having Edith, and we had worked together to fit my job role around my commitments to Edith and all her care. It was working and I was really happy.

If you have ever moved house you will know just how stressful it can be and that on top of us being 9 months in to our new life with Edith that meant that my own personal health was put on the back burner. I started to notice my body trying to tell me something around Christmas time I suppose but again as you know, Christmas brings its own chaos! We moved in on the 4th December and it was to be Edith’s first Christmas. I remember we put up the Christmas tree straight away and that Christmas Eve my mum arrived, unexpectedly, from Australia. Edith’s first Christmas was perfect and back then I don’t remember any symptoms really ringing any alarm bells. Skip forward a few months to March and I knew something was amiss and after a chat with my sister, I booked myself in with the GP.

The appointment was a couple of weeks away and over that time the symptoms began to worsen. When I saw the GP she gave me an internal examination and reported that she could see/feel what she thought was a cyst. As I was menstruating at the time (typical and grim) she said that she wanted me to return the following week so she could take another look. I booked another appointment and left. The following week I woke up on the Saturday (the appointment was to be on the following Monday) and despite finishing my period a few days earlier, I was bleeding again. I just remember feeling really shocked but never thinking the worst because I didn’t know the symptoms of cervical cancer. I returned for the appointment and explained what had happened. The doctor wasn’t concerned but thought it best, as she wasn’t sure what was going on, that she refer me to Gynaecology at St Michaels for a routine appointment. Although I knew I was up to date with my smears (February 2013 next one due 2016) I requested one and the GP said she didn’t feel it was necessary. I wish I had insisted, as had she used a speculum, she could of prepared me for the horror that was due to unfold.

I received a choose and book appointment a week or so later and selected the next available appointment; Friday 22nd May 2015.

On the 11th May we set off on a pre-booked holiday to Centre Parcs for the week with my sister and her family. I remember feeling worried but not too worried as the GP had done a non-urgent referral so that must of meant she wasn’t worried. Whilst away I wasn’t able to use any of the swimming facilities as the bleeding was totally random by this point (again massive alarm bells) and I didn’t want to cause myself any embarrassment. The worst part of this holiday was that every time I look back on the photographs that’s all I can remember. I hope to return one day to rectify that.

We can home on the Friday and my appointment was the following Friday.

My husband had taken time off work so that her could care for Edith whilst I attended the appointment and I made my way to the hospital, alone. I didn’t feel the need to bring anyone with me, why would I? I hadn’t been given any reason to believe what was happening to me was a cause for concern. Sure my urine was no longer staying in my bladder when I stood up to get out of bed in the mornings; probably because I had not done my pelvic floor exercises and I was bleeding really randomly; probably stress and these explanations were enough to satisfy my naïve mind.

As I sat in the waiting room the stress of the whole situation mounted up inside of me and when I was called through I started to cry as the doctor led me down the corridor. We discussed what had been happening over the last few months and she did a physical examination. She asked if I minded her colleague coming in for a second opinion and I agreed. After I got dressed I was sat down in an empty room and things began to feel very very strange. Before I knew it I had a team of doctors in the room with me, one of which was an oncologist. I was told that it may be cancer and that they needed to investigate further. I felt like a rag doll, like I was not in control of a single part of my body. It was decided there and then that I would need to go down to theatre as I was loosing far too much blood and they needed to find the cause and to stop it. I had never had a general anaesthetic in my life, let alone in a situation like this. I called Dan; poor bloke, I waffled what I had been told ever so casually and went straight into mum mode for Edith and how he should get here with her. Once I realised that this probably wasn’t a logical solution, I called my sister. Again, poor Vicki! She must of had the shock of her life and quickly found someone to take care of Olive to be by my side. In the end, Dan, Vic and Little E all came to me.

I went down for the GA and came round to the tune of cancer. When they investigated they had found a large (tennis ball size) 10cm tumour on the outside of my cervix. They had made the decision to remove it there and then and it had tested positive to be squamous cell cancer. What was happening??? How could this be?? I stayed in hospital overnight and once the cancer diagnosis was confirmed, my mum caught the first flight back to the uk to be with me. It was Olives 4th birthday party on the Saturday and I convinced the doctors to let me be a part of it and go home. I felt desperate to carry on with life and be with my wider family.

The following Friday I was sent for an MRI scan (first one ever) to check the rest of my body for cancer. Had the cancer got into my lymph nodes it could be growing in other areas of my body and they needed to rule that out. The scan was done and then I had to wait till the following Wednesday to find out if it had spread. Longest 5 days EVER. Thankfully at the results appointment they confirmed that the cancer had not spread beyond the cervix. I was told the next step was to determine how much, if any, of the cancer was left in my cervix. Where the tumour was attached there may still of been an area of cancer but they needed to determine if that was the case by doing a procedure called a cone biopsy. This result would direct our next step, and it was then that a hysterectomy was mentioned. I was told that given the position of the tumour and the way it had grown, it was unlikely that I would need one but it could not be guaranteed.

The procedure was organised in the coming weeks and a follow up scheduled. It would involve another anaesthetic but this time it would only be a day procedure.

The follow up appointment was hard. There was an area of cancer left and it was deep and wide enough to warrant more treatment. I was told I could have a trachelectomy which would still enable me to carry a baby with a 1 in 3 chance of miscarriage or a radical hysterectomy which would mean I could never have children again. We discussed the options in great detail and it became apparent that there was only really one option here and that was to remove every last trace of this hideous disease to make sure that I survived for the baby I already had. They would preserve my ovaries, as was standard procedure for someone of my age, so that we could decide to freeze eggs in the future if we wanted too. They booked me in for the procedure there and then; Tuesday 4th August 2015.

Over the next few weeks all I could focus on was having the procedure. I didn’t focus on what it meant in terms of children, only what it meant in terms of surviving. The thought of dying and leaving my family, especially Dan and Edith was overwhelming. The day of the procedure arrived. I remember lying looking at the big surgical light above my head in a room full of strangers. As the tears rolled down my cheeks and I was sent off into the land of nod, I knew the person I was going to sleep as and the person I would wake up as, would never be the same again; a truly daunting prospect. I had already changed so much over the last year with becoming a mum and a carer.

The year following my surgery was the worst. After I recovered other parts of my life began to fall apart. The stress and strain of disability, cancer and poor mental health had left my marriage in tatters. We were completely different people now, I was especially different and the trauma of the last 2 years had made me difficult to live with. Edith spent most of 2016 in and out of hospital which put extra pressure on us as parents and carers, and a year after my surgery we split up and Dan moved out. We were separated for 7 months and after a dramatic episode in hospital with Edith in April 2017, we reconciled. We have worked tirelessly to make our marriage work since and finally feel like we are back on top, almost. Edith’s health over the last two years has been the best it has been since she was born. She has shaken the epilepsy label off and managed to avoid any unexpected hospital stays since April 2017.

I am still very much working on me. I attend regular check ups for my cancer and this will be my 4th year cancer free. The psychological effects are ever lasting and the trauma of that day in May 2015 still leaves a massive mark on my day to day life. The NHS provide me with regular clinical psychologist sessions that help me to understand and deal with all of the emotions this shit storm has left me with. I try every day to make positive steps and changes in my life and some days that comes easier than others. These mental health issues I now face are contributed to from life as a carer, going through cancer and supporting a husband who at times over the last few years has been suicidal. My mental healths pales in comparison to his but our struggles are relative.

I wanted to write this piece to raise awareness of cervical cancer, being a carer and mental health. I hope my open honesty will inspire and help anyone reading this who may have been affected by the subjects touched.

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