Gynaecology Oncology news and patient stories

Roz's Advanced Ovarian Cancer Experience

Hi, my name is Roz and at the time of writing I am 52 years old, still working, married with 2 grown up children, 2 grandchildren, a horse and 3 kittens. Oh, and I have stage 4b epithelial high grade serous ovarian cancer. I am currently NED; no evidence of disease and on maintenance (Avastin) every 21 days via my PICC line. The peripherally inserted central catheter (PICC) was put in after I had my ultra-radical debulking surgery and it was getting harder and harder to put a canula in. The chemo can affect veins. When they were messing around trying to put a canula in my foot – my that hurts, it was decided that I should have a mid-line whilst in hospital. I had the PICC put in ready for my post operative chemo. Its still a nightmare getting access for CT scans as they can’t use the PICC line. 

I have blood tests every 21 days to make sure everything is okay for a repeat infusion and to measure my CA125, the “cancer count” as I call it. The CA125 is not the only factor they measure, and I know for some its not indicative at all, but it seems to be for me. It was 21 (35 and below is normal people) but it was 41 at the last blood test and I am awaiting the next round to see if the cancer has stopped behaving. 

It’s been a whirlwind of change and emotions since my diagnosis on 1 April 2021 and no it wasn’t an April fool! I went for my first mammogram, which I jokingly said was my passage into old lady status and instead got passage to the ovarian cancer community. I was called back after the mammogram and whilst they were taking some biopsy’s the lady noticed my lymph was raised. She thought it probably was my very recent covid jab but took a biopsy anyway. Lucky for me, that identified the cancer which had obviously spread to my axillary lymph nodes. We had to look up axillary (arm pit)!  There have been others… we thought that the consultant had misspelt serious, putting serous – until we read serous was a cancer word. There are a lot of words we have had to look up.  

I say we a lot throughout this piece as its not only my journey and experience, it’s my husbands too and with varying degrees, those in our family. We have had to deal with the implications, face things that we never anticipated would happen, deal with our own and others’ emotions. I spent 42 days in hospital after my surgery in August 21 and only recently have thought more about what my husband went through during that time and the range of emotions he must have had. `Talk about things if you can, it can be hard, but getting those worries, fears and concerns out in the open really breaks them down and makes things manageable.  

I had complications after my operation and a stay that long in hospital is not normal. Everyone was so lovely, caring and kind. I will always be so in awe of everyone who looked after me and talked to me from the lovely ISS food ladies who tried so hard to find food I liked and didn’t bring back up, to the nurses, consultants and Drs who tried so hard to get me well.  

We always have lots of questions to ask of the consultants, it is the not knowing what’s happening that can be one of the worst things, I don’t believe that ignorance is bliss. That said we are on a learning journey, and you find out things as you go along, the hospital teams can’t tell you everything that might happen. For example, I didn’t realise;

  • the surgical menopause could be so harsh. A normally cold person, my hot flushes are something else. I actually hadn’t thought about the menopause at all and what would happen. 
  • that the chemo treatment would change my taste so significantly from one week to the next. I still don’t like chicken 2 months later.
  • the chemo and maintenance side effects can change as you move through treatment. If you have a pain or change, blame the chemo its that or the menopause!  
  • that my “down below” would be different post-surgery and it would feel like it wasn’t mine.
  • that there is no silly question, someone will have had the same experience and will be able to offer solutions/help or words of comfort. 

It’s definitely been a journey so far and my life is different to what it was. But it is my life, and I am enjoying things and doing things we want to do. I am hopeful I will get medical retirement so I can enjoy this time with my husband who had taken early retirement already as a result of the diagnosis. I am signed off now.. I need to do my light exercise, ride my horse (carefully) and simply don’t have time to go to work as things take longer to do now a days!    

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