Written by Claire Angus
"Today I sit here a new person, although I may need to have a further operation and have regular bloods and scans. I am forever grateful of the time, care and support from every member of the NHS that helped me"
Claire, Ovarian Cancer Survivor
Well where do I begin... I have always been well & active. But wow how all that changed back in 2021.
So I'd say back in June 2021 I started to notice I was bloated ( I thought this was due to over eating during the pandemic and having to work from home.... closer to the snack cupboard) but I started to notice I was waking up multiple times during the night needing the toilet more, so much so that my sleep was being disturbed. So in the August I decided to go to the GP to see if anything was going on.
I arrived and spoke to my GP who advised I should have my bloods done to check things out which included testing for diabetes, my thyroid and hormones. A couple of weeks later they advised me that I was in peri menopause stages and this was causing it so just sent me on my way.
However, how things changed. I remember clear as day waking up on 29th October 2021 to get ready to start work from home. Well I couldn't physically move to get out of bed and my left side was so painful. I've never felt pain and discomfort like it in my then 40 years of life. I was trying so hard to get out of bed for about 40 minutes and it came to the point I nearly called 999 thinking something serious was going on. However the pain subsided and I went to the bathroom. Trying to pass urine hurt but more of an internal pain and I had to hold my stomach to ease the pain.
Knowing this didn't feel right, I called my GP who got me in immediately. He pressed my stomach and that was too much. He advised me to go straight to A&E as he stated I possibly had bladder retention. So off I went for what was an uncomfortable 11hr wait. Waiting to be seen patiently I hear my name being called. I had urine samples done and bladder scans. They use a different kind of scan machine and my bladder was exceeding the markers set out on the machine. They said I had over a litre of fluid in my bladder which is beyond what it should hold. I lay there panicking thinking I'm only 40, why is this happening?
They took my bloods and they came back to say there was no infection in the blood or urine sample. They then came back to me to advise me that I'd have to be fitted with a catheter. My heart sank. 40 and walking around with a pee bag attached to my leg. I walked out of A&E feeling even more uncomfortable and dirty, however I felt slight relief that they were helping me. However the only way I could sleep at night was to be sat upright on my sofa as laying down was just too much, so that was my bed for the foreseeable future.
2 weeks later on the 11th November I attended a TWOC (trial without catheter) appointment. And wow the relief I felt having it removed for the next few hours to pee normally. Wow what a feeling. So I'm there drinking lots of fluid, walking around feeling free and peeing into a jug. Oh the glamour! However each scan I had still showed too much fluid in my bladder. I'm literally sat there in tears and confused thinking I'm passing so much, but still showing far too full. So I lay there being told I need to have further checks and be sent away again with another catheter fitted. My heart sank and the nurse was absolutely brilliant and gave me a hug knowing how upset I was.
So she begins to fit a new catheter, however I noticed her face change when no fluid was coming away. She went away to get another nurse to assist, again they also looked puzzled. They too went away to get someone else to check, again no urine which was showing on the scan was passing, so they got the consultant in the room who began to press on my stomach and noticed it begin to swell & saw the discomfort on my face. He went away and came back and asked how quickly I could get to my local hospital for an urgent CT scan. Luckily this is 20minutes away. I was so worried and wondered what was wrong and how broken I felt. The consultant said he didn't believe it to be my bladder, but in fact an ovarian cyst.
So off I went straight to the CT scan department at Wythenshawe hospital to get the scan with my mum coming to take me. I arrived and was seen immediately as they were expecting me. I had my scan and was taken somewhere to wait. By this time I was alone and distraught in a ward. The tears and upset wouldn't leave me. A lovely nurse came to see me as she had noticed the lady who saw me previously she had worked with her in ICU during the pandemic. She talked away with me about our love for cats. She said the wait is usually 4hrs for the results, but as she could see it had been a long day for me already, she told me it appeared I had a 4cm ovarian cyst on my left ovary which is causing the issue and that I could go home and would have to return the following day to see the specialist. As much as I felt relief, I began to wonder what that meant for me so again came home and began to relax.
So on the 12th November I went to see the specialist and he discussed the CT scan. I took my mum along ( no matter your age, we all need that motherly comfort don't we ) so here I am sat awkwardly by the consultant. He asks how I am and how I'm feeling. I told him I'm doing okay but very anxious (a feeling I've never experienced before). He then tells me my 4cm cyst on my left ovary is actually 15cm and around 7lbs! My heart sank and I looked at my mum for reassurance, however my mum had tears in her eyes. A moment in time I'll never forget. He stated that I'll be okay and that he has seen these much larger and I'm going to be well taken care of and to not worry. Also I could leave there with my catheter removed. Now that made me happy even through the devastating news he had just told me.
So here I am, not realising the journey has only just begun. After numerous appointments with an amazing consultant at St Mary's gynecology department & numerous MRI scans, CT scans and bloods, the results came in. Little did I know about the CA125 tumour levels. Mine came back at around 100 to which I could save having a full hysterectomy as that broke my heart in two knowing I could never be a mother. Then the appointment came in the weeks following that the cyst was actually an ovarian tumour; part solid & part liquid mass and that my surgery to remove my left ovary & the tumour would be either Christmas or New Year week.
I said I just want it out of me so I'm willing to have the surgery whenever they could do it. So Christmas week comes and no call. My heart is breaking knowing I have to have this awful thing inside me for Christmas. But I didn't let this ruin my day, although I was tired I made sure I had the best day with my loved ones. So here I am on the 27th December and I get the call to go in for my covid swab as they want the surgery to be done on the 31st December. Happy New Year to me haha! The swab was negative and I get to have the surgery. I was so so happy.
On the eve of the surgery I couldn't sleep. I was very nervous but glad it would soon be out of me over the next 12hrs. My parents came to pick me up at 6am to get to the hospital admissions for 7am. I had music playing to relax me. We arrive and have cuddles and I knew I would see them later that day, but just my mum due to the covid rules.
The nurse takes me to my bed, so I set myself up and get comfortable with my colouring pens, books and magazines as I could be waiting a short while or longer. I see my consultant throughout the morning who advised that my surgery is a little delayed due to an emergency so at 10am I was allowed some water with me fasting. So after this I had a little sleep. 2pm comes and the nurse comes to get me as it's time. Anxiety seriously kicks in by this time, but they reassure me everything will be fine and I get my gown on so my peach isn't shown walking down.
So I'm walking to theatre chatting to the nurse when all of a sudden I didn't feel too great and I felt sick. She said it's more than likely your worry is getting the better of you knowing it's time. But something just didn't feel right so I asked if there was a toilet. Well that was it! I couldn't stop vomiting and the pain in my abdomen was so intense. Next minute everyone is rushing towards me to hurry me into the theatre and the next minute I'm leaning over the surgery bed where my arm is pulled to one side having my cannula fitted. Then a mask is put over my face to put me out and all I can remember is feeling like I'm being suffocated. Little did I know my cyst/ tumour ruptured walking down to surgery and it was critical. As I woke from the surgery I was feeling so ropey. All I remember is them saying everything went fine and that I also had to have my appendix removed as the tumour was all across my stomach and was attached to it.
They then took me from recovery to the ward where I saw my mum, this made me cry, so much emotion. As soon as I saw her I said "mum it's all gone now" as I knew she was so so worried. I was in and out of consciousness and felt absolutely wiped on the pain relief. Then the nurse brought me some toast and tea and it felt like I was eating dust as my mouth was so dry haha, which did make us both laugh.
Anyway, sadly 8pm came and my mum had to go home. So I was there on New Years Eve drinking tea knowing I go into the new year with this awful thing removed and I felt so much better, although I was still on the meds. So I'm there not realising all the wires and machines I'm hooked up to and these leg bags that inflate to keep the circulation going. Wow they were so nice! The nurse came along to turn the lights off and close the curtains around my bed, but I asked if she could keep the window side open as I wanted to see the fireworks go off over Manchester so I felt part of the new year celebrations. Little did I realise I would tear up and become emotional knowing what I had just been through. But it felt nice to see them.
In the early hours as the meds were easing off, I felt sick so more meds to help stop the sickness were given to me. This made me feel better. Each day I was in the hospital the care and comfort each nurse, doctor and consultant gave was just beyond any expectation. They helped me get out of bed the following morning and that was it, I was off walking around. After such major surgery they were shocked, but one thing for sure is you have to keep going no matter what.
Image: Claire Angus
So on the 4th January I was discharged and could go home and see my 3 cats, my beautiful fur babies who I missed so much. Not realising more was yet to come my way.
So on the 11th January I saw my specialist to discuss the op and investigations on the tumour etc. But as I walk into the room with my mum I notice that a Macmillan nurse is sat there too. My heart sank, I looked at my mum and she held my hand.
The consultant said as much as the operation went well it was sadly Stage 1C ovarian cancer with my appendix also being a rare cancer which was called LAMN, a 1 in a million cancer. My heart sank again and I became so upset. Due to the tumour rupturing I'd now have to have 6 sessions of chemotherapy to ensure no cells were left behind after they had washed out all the mucus that had spilled into my abdomen. Again shattered and given leaflets about ovarian cancer & chemotherapy, I knew I had to face this head on and keep going.
So now it's February and I head to The Christie to speak to my oncologist about what treatment I will be having and to be asked if I understood why this was needed. So I have my mum with me. My Mum did work here before lockdown began but she retired so I knew I was in the best possible hands. When he told me I'd have to be on Carboplatin chemo for 6 sessions every 3/4 weeks, I looked at my mum as I didn't know if this would make me lose my hair. That was my next worry, as silly as it is you do worry although if this was the case, I would embrace the change. But thankfully this chemo wouldn't cause a full hair loss, but in fact just thin my hair which it did but I accepted this.
So every few weeks I'd have my bloods done on a Saturday and have the chemo on a Monday.
July came and I rang that bell with all my might. Tears and emotions were there but they were happy tears as through the operation, acceptance of change inside and out, it was all a relief. After speaking with numerous patients on our own little journey's, it gives you an awakening to grab life and do what you can to create happy memories.
Today I sit here a new person, although I may still need to have a further operation and have regular bloods & scans. I am forever grateful of the time care and support from every member and every levels within the NHS that helped me.
For anyone going through a diagnosis, treatment or recovery always be assured no matter what stage, or what part of your journey you face you always have hold of that "C", it never has you!
I just wish 12 months prior to all this happening when I had my smear test, that they would offer you a simple CA125 blood test along with an ultra sound to spot any issues with your ovaries as it could prevent so so much. And something could have been detected sooner so I wouldn't be left now infertile. My ovarian cancer journey was the first in our family history, so it isn't genetic in our family. This started and will now stop with me.
This is my story, a long waffle but I hope it helps someone know that you're not alone, no matter what your personal journey is. Keep going, stay positive and keep smiling through the tears and pain inside. ❤️
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