After the flurry of my diagnoses, I had the much-anticipated consultation…. Which turned out to be the doctor who gave me my stomach drain and told me I had Ovarian cancer! He told me that his plan was to open up my abdomen from top to bottom and he and another specialist was going to remove everything they could see. let’s remember that at this time I was still quite unwell and very weak, I had lost a lot of weight because I wasn’t eating due to the ascites, but he told me ‘I’m going to throw you at a wall and you’re going to bounce back because you’re so young.’

You can imagine that my anxiety was through the roof at what my future looked like and my doctor told me ‘me and you are going to be seeing each other for a very long time, it isn’t curable but it is treatable, think of it like a chronic illness like diabetes’ now that news might not be the best to some people, but look, this was good news to me, they are going to keep me alive!!! Yes, it means constant treatment, but I’m here with my babies and family and that’s the main thing.

I had to wait 2 weeks for this surgery, i had to go and do some fitness tests because this was going to be major surgery and they had to check that I was going to be able to pull through it. My ascites made this very difficult though. I remember they put me on an exercise bike with a facemask on to check my breathing and my stomach was so swollen and it kept popping out from under my top. They must have been thinking to themselves ‘who eat all the pies!’ I had to keep stopping too because I literally couldn’t breathe. I often found myself explaining myself, like ‘sorry, this is just fluid it’s not normally like this’ why am I like this?

Surgery day!!!! F*ck! This is actually happening now. My stomach was bulging so much, and I wasn’t sure if they were going to drain the fluid first before they started, I actually imagined them opening me up though and they would all just be standing there in a pool of my stomach fluid after it gushed out like tsunami! Because this is how I imagine professional surgeons do their jobs apparently. Anyway, surgery prep had begun, had to get an epidural put into my spine and honestly, compared to what I was actually facing, this was the worst thing ever! I had to keep asking them to stop, and it got to the point that my surgeon came in to hold my hand whilst I was getting it done, what a baby! They then put my cannula in, put some amazing drugs through it that made me instantly just love everyone in the room, then the face mask went on and it was ‘night, night Clare, sleep tight’

I was originally told that the surgery would take about 6-8 hours, but I was woken up just 4 hours later, I had drains hanging out of my stomach, and a cannula in my neck!! I was so drugged, but equally as anxious to know why it didn’t take as long as I was told. They got one of the surgeons assistants to come tell me what had happened during the surgery, ‘they couldn’t take it all out, when they opened you up there was more cancer than was originally seen on the scan, they removed the cancer from your small bowel, they removed your Ommentum, they removed the bottom half of your peritoneum, but they didn’t want to do any more in the top half, they need to do another surgery to get the rest out’ ….. my heart sunk, why me? I had just over 80 staples holding my stomach together, I was numb all over from the epidural and other drugs, I was now looking at over a week’s stay in hospital and after I come out of intensive care they put me on a ward next to a woman who had been shot (honestly couldn’t make this shit up) and was being fed through a tube, she kept smoking her vape in the room and drinking the sterilised water they used to flush her feeding tube, she was so abusive to the staff, let’s say those first few days on the ward was quite a show ….. and I still have fucking cancer!!

Recovery was absolutely grim, im not even going to lie, because I was so unwell before the surgery, everything was just such a slow process, I was still hardly eating, I had been put on ensure milkshakes, which is like a protein shake to help you heal better and to give my body the food it needed to get through it all. I had district nurses coming out to my house every day at first to change my dressings, I had to wait for about 2 weeks until my staples could come out, I still had a stomach drain in to drain off any ascites that might come back. The day comes for the staples to come out and because I’m such a lucky lucky person and I hadn’t already been through enough, the bottom part of my stomach popped open, I had a big gaping hole, and you could see the underneath stitches which was literally holding my insides in place! This hole took over 6 months to heal, that’s how weak my body was, everything just took so long to heal.

This part of the story does end well though because, yeah it was hard and yeah I had some of the worst moments of my life during this time, which included having to ask my husband to do some very embarrassing things for me which I wasn’t able to do myself, but the light at the end of the tunnel in this part is, that I did heal eventually and I did start to eat more proper food, and my ascites had given up and left me alone!!

During the UK’s first national lockdown, I lost my amazing little dad to covid, this happened in the March of 2020. In April 2020, we were all in a state of unknowing and worry, are we going to get covid? will we ever come out of lockdown? I didn’t really get a period of time to grieve for my dad properly due to this, which ultimately was ok with me, because why do I want to let that pain in? Anyway… during April I began to feel a little unwell, and without going into great deal of my actual symptoms, I will simply say, they were very much similar to IBS symptoms, only a little more severe.

My doctor diagnosed me with IBS through a phone consultation, as obviously covid was rife and we weren’t allowed to visit the doctor. I was given Buscopan medication to treat my symptoms, but obviously this never worked. Months passed and many phone calls to the doctor passed only to be told the same thing repeatedly. during these months, my stomach began to slowly swell. Fast forward to August 2020, my stomach then looked like I was ready to birth triplets!! I was so uncomfortable, was unable to eat much, had to sleep sitting up, could barely breath walking from one room to the next… and I thought to myself ‘surely this can’t be IBS’ so I made the decision to take myself to A+E, where after a lengthy wait, a doctor did an ultrasound scan on my stomach and found free fluid which is what they call ‘ascites’. Now obviously as an A+E doctor he was unable to tell me much more, but he did give me his opinion on what can cause this fluid to build up, one of the reasons which he thought was likely, was a tumour.

What?!?!?! a tumour? I remember walking out of A+E and sitting in my car and just crying my eyes out, I was thrown into the biggest black hole ever! I actually cried writing this part of the blog with just remembering how broken I felt at that exact point.

I had to wait for a CT scan, but the fluid was getting too much to cope with and 3 days later I took myself back to A+E, surely they must be able to help me? at this point the fluid was so severe that I was unable to pass urine because it was squashing everything inside my abdomen. At this point the doctors took blood from me an unbeknownst to myself they actually checked a tumour marker called CA125 which is an Ovarian cancer tumour marker, and the number came back at 1002! Now that number may mean nothing to you, but if I tell you that a normal CA125 ranges from 0-35 you can clearly see that that number for me was very high. I was told that they suspect I have a tumour on my ovaries, and that they were sending me for an urgent CT scan to see what was actually going on.

The wait for the results for this CT scan was horrendous to say the least, I was in a bed next to a girl who kept telling the nurses to ‘f*ck off’ and when she eventually quietened down to go to sleep, I had the fortune of looking at her arse for hours on end because she wouldn’t pull her trousers up, and I remember just lying there thinking to myself ‘what the actual hell is going on? how has me having IBS led to this?’ I was so scared.

CT results came back, and although nothing was found on my ovaries, I did have small nodules which they could see, on my Omentum (this is like a fatty cape that extends over the front of the abdomen). it was all kind of whirlwind from this point. I was booked in to get a biopsy, but before this I was sent to the Women’s Hospital to get the fluid from my stomach drained as I was becoming very unwell because of it…….. 6 whole litres of fluid was drained from my stomach, that’s what I had been carrying round for months, no wonder I was so sick!! things got a little better at this point and I was able to eat a bit more food and build my strength back up. unfortunately, the ascites accumulated again very quickly which saw me back in hospital 2 weeks later for another stomach drain… 7 litres this time, in just 2 small weeks! I had my biopsy done a few days after the second drain and had to wait 2 weeks for the results.

Those 2 weeks where the darkest of days for me, I had reached rock bottom mentally. I couldn’t think straight, I was very irrational in my thoughts of what was going to happen to me. I cried a lot! I didn’t tell anybody other than my close family about what was happening, I didn’t want it to be real. the ascites just didn’t let up though and just 2 weeks after my last stomach drain, I was back in hospital getting another…. 9 litres this time!!!! it was during this drain that the doctor who was performing the procedure told me he could see that the biopsy results had come back, and it confirmed I had malignant ovarian cancer…. I was taken to a bed to wait for the drain to complete which took hours, and there were 2 patients sitting opposite me, trying to start friendly conversation, asking me what was wrong with me etc… but I couldn’t even look them let alone talk. I’ve got cancer! shit!!!! what am I going to do now? tears just rolled down my face the whole time I was sat there with a drain hanging out of my stomach…. the most surreal moment of my life! little did I know at that time that the doctor who told me this news, would become my lifelong angel in disguise!

The very worst part about all of this time, was that we were still in a state of lockdown, the hospitals didn’t allow any visitors and I had to make all these appointments and procedures on my own, I had to walk in the dark on my own! and although that was hard, I believe that’s made me stronger to this day!