2 weeks post surgery

Hi,

I am new to this page and have found myself reading over all of your stories… so many people going through similar to myself. 

My story so far…

On arriving back from a trip to Las Vegas with friends at the beginning of November, I was feeling particular bloated and felt that I could not shift the weight at all whereas normally I can lose weight as soon as I get my mind on it. I found I was having consistent heartburn which I has only ever had before when I was pregnant.. so brushed this off as having put quite a bit of weight on, this must be causing the heartburn too. I have always needed to go the loo a lot of a wee, a running joke with my hubby - I always say well after naturally delivering a giant 11lb 3 baby, wouldn’t you!!
Feeling fat and annoyed with my body.. I kept trying to get on a diet that worked. Then towards the end of November, my tummy just didn’t feel right.. it felt like I was pregnant, hard and rounded. It was strange, it felt like there was something underneath my right boob.. like a babies foot… I had to sit really straight to feel comfortable, I couldn’t slouch as it was really uncomfortable. I booked an appointment at my GP.

My GP examined me and felt my tummy and said it wasn’t right.. it was too hard and something didn’t sit right with her. She sent off for some blood tests and said she would see what comes back.

2 days later the doctor rang me and said the CA125 marker was elevated at 57. She said she is going to send me for an urgent ultrasound scan, which she did. I was so frightened and cried and cried at home. 

On the day I went for my scan, I remember finding it so difficult to hold my wee in even just after drinking one glass of water. My husband and my mum came along. They just kept telling me, don’t be scared, we need to know what it is, so we can get things sorted. I tried to be brave. I went into the room with my husband and had the ultrasound. The clinician instantly seen what she needed to and told me that it was a massive mass although she said she couldn’t see exactly where it was coming from as it was taking up all of the space on the screen. She said she can’t measure it because it won’t all fit on her screen. I just remember feeling like I was having a panic attack, couldn’t catch my breath. I walked out of there with my husband and told mum. We all Sat in silence all the way home and then cried. My best friend came straight round and we cried more. 

Next I had a CT scan, this showed a mass made up of fluid and hard bits. Suspected to be from the left ovary.

I was admitted to the gynaecologist ward at my local general hospital as they wanted to take a biopsy. The morning it was due to happen, the surgeons decided they couldn’t do this as it would be too dangerous if the mass was to leak. I went home and waited for an appointment at the specialist women’s hospital half an hour away.

On 6th December I met with the consultant at the specialist hospital and she explained to me that the mass was likely on the left ovary. It’s massive, a minimum of 35cm x 25cm.  She does see a slight thickening of the lining but this could just be down to the pressure of the mass. Some lymph nodes were swollen but not massively, so again she said she doesn’t feel too concerned about this. She is hopeful that the mass is contained in the ovary and not gone anywhere else. She made me sign forms to say if I require parts of my bowel to be removed etc that I consent to it etc. She said the main thing is getting this out quickly. She advised me to have a total abdominal hysterectomy, including the removal of my uterus, fallopian tubes, cervix and both of my ovaries. She said my operation would be in the next 2/3 weeks.

On the same day I went for my pre op. Had bloods taken, an ecg done, a chest X-ray and a talk with the specialist nurses. One of the nurses showed my husband how to administer my blood thinning injections that I had to have every night up to my operation. They sting and I hated them.

Over the next couple of weeks Christmas was coming and with a family of 4 I tried and tried to get in the Xmas spirit for them.. even just a tiny bit. It was so difficult when all myself and my husband could think about was how this was looming. I soon received a call from the hospital saying my surgery date was set for 28th December. I was relieved but scared to hear this. But I had a plan, and that helped. I got my hospital bag ready with the things I would need for hospital and ordered Xmas presents online, going through the motions.

27th December I had to have my glucose pre op sachets and again the following morning before I was admitted. 
28th December, ironically, mine and my husbands wedding anniversary and the day we was meant to be jetting off to New York for New Year with the kids and our friends… I was admitted.

I went to the ward with my husband and mum but they were sent away even though I wasn’t scheduled until afternoon surgery. I waited and seen the anaesthetist and the surgeons prior to my surgery who explained everything again. I was so tearful and scared in a way I have never felt before. They let me go down and sit in the cafe for an hour or so to kill the time in the morning with my husband and mum. This helped. When it was time for me, one of the lovely nurses from the theatre came to collect me, all ready in the surgery socks, weird nightie and my dressing gown. 
I walked into the theatre and couldn’t catch my breath. All those clever surgeons and doctors there, all for me. They gave me a spinal block with an injection in my lower spine and then pur me to sleep.

I woke up!! I woke up!! I was euphoric.. it was out of me. My mum and my husband and my brother and my two children were straight there as I was slowly coming round.. they were all so pleased for me. The surgeon had rang my husband to tell him that  the surgery had gone well and they were met with what they had hoped for and the mass was located in the left ovary. It was almost 40cm x 30cm - classed as huge. They felt positive and my mum and brother and husband were all crying in the cafe downstairs upon receiving that call.

I recovered well with good pain relief in hospital, had tubes going in my belly that was attached to an IV drip sending in local anaesthetic. I had a morphine drip in my arm. I had suppositories for pain relief at night time. I also had a catheter for two days. When I spoke to the consultant, she said she was happy with how the surgery had gone and suspects the mass to be either benign or a borderline tumour. She has sent it all off to the lab along with lots of swaps and biopsies of surrounding tissue etc.

On day 2 I got a shower! I felt so much better after that. I sat down in the chair and did it. I put my new soft pjs on and managed to get back to my bed. Walking see very difficult those first few days. On day 4 I was discharged and the journey home was so painful even though I had a million cushions and my husband drove so slowly.. i was so sore. Every time I stood up, it felt like I had to hold my tummy because everything would drop down.. turns out tummy muscles are needed to hold everything in place in there! My surgery was as up and down cut so it went from my pubic area to half way past my belly button.. a bit like a Frankenstein cut.. I didn’t care though because I was out of me. The wound healed really well.m with dissolvable stitches. Clever doctors. 

On day 8, I was in a new pain on my right side, own the side of my body when I breathed in. My neck and my rib cage hurt. I called the nurses and she said go and get checked at my local A&E which I did. Turned out I had developed a chest infection and also more seriously, a Pulmonary Embolism (blood clot on my lung). I was still taking my blood thinners but these didn’t work for me unfortunately. I was given a new big dose now as an oral medicine for a week, which then goes down to a preventory dose for 3 months following! I’m just coming towards the end of that week now. I’ve lost 2 stone since my surgery due to the size of the mass and not quite getting my appetite back yet. 

Today I received a letter from the hospital saying they have made me a telephone consultation for 2nd Feb to find out what it was and get all of the histology on the mass and all of the swaps they took around it. I am praying for good news. I want our lives to be able to move forward now… 

I’m wondering if it is a good sign that they are doing the appointment as a telephone consultation and not face to face? Surely they wouldn’t give me bad news over the phone? I will be thinking about this and only this now for the next 3 weeks…

So that is my story so far. I have the best family and friends and have been very lucky to have had an immense amount of love and support shown to me and our family the last few weeks. You never think that ‘C’ word might be coming your way.. do you? I have found a strength inside me that I never knew I had.. when you are faced with such fear how can you not find a way to cope? You have to get out of bed, make the kids dinners, do school runs… you just find a way. Because you have to.

Please guys keep your fingers and toes crossed for a good outcome for me. I am so sorry you guys are all going through similar pain and torture.. it’s the worse ever. Stay strong and accept kind gestures, take random days out to take your mind off things, don’t google too much and hold your family and friends close. You need them xxx lots of love to you all