Hello everyone,
Im a a previous poster using a new username that I’ll keep just for these threads. I’m quite sure though that there will be one or two posters who recognize me. I do lurk on the threads but it’s the recent increase in women posting after a diagnosis of OC that has drawn me back in to tell my story just in case it may help others.
In October 2020 during a routine well woman check up it was decided that I should have hysterectomy because of my very large fibroids that should have disappeared as I got older but never had. I was 62.
Two days later I was seeing the Dr who’d do my surgery and I could sense something was amiss during my ultrasound. After a few questions had been asked I knew I was in serious trouble and I was so scared I jumped off the table and tried to run out of the room with out anything on from the waste down. Thankfully the young registrar who was also there and who’d been in my daughters class at school 😂stopped me and I was persuaded back on to the table where I then decided they could continue my ultrasound but the drs couldn’t speak to each other about what they saw. I wanted know part of it 😳 I know now I was having the start of what people call a nervous breakdown and by the evening of that day I was under the care of the psychiatrists as well as the team who’d get to the bottom of the 6 kilo mass on my right ovary. How it had been missed on two previous ultrasounds in our poly clinic just a few days previously I’ll never know. But I do now understand that my mucinous tumor can evade transvaginal scans I’d had previously.
So long story short, two weeks later I had a complete staging and debulking and though I went into theatre with nothing much to concern the Drs, my Ca125 was only 50, I did end up with a diagnosis of stage 1a MOC.
I can recall breathing a sigh of relief after he diagnosis as I really did think ‘I’d gotten away with it’ because I didn’t even need chemotherapy but, as time has gone on I now know I hadn’t in fact gotten away with anything and that a stage 1a diagnosis can mean next to nothing in the grand scheme of things. Granted that women with this diagnosis do have a very good survival rate over 10 years but unfortunately those who do relapse don’t really have much of a chance at fighting a relapse as so little is known about these tumors and treatment options are extremely limited.
Its 19 months now since it all kicked off and my chance of a re-occurrence is currently at 60 percent till I complete two years post diagnosis then it goes down to 10 percent. God only know what the 60 percent actually means in real terms though because I was too scared to ask 🙈
Currently I have a check up every 6 months and I’m waiting for the results of the blood tests I had done on Sunday. I really don’t cope with the lead up to them or the days after and it then takes a week or to after that to get back on an even keel. Mentally/emotionally I am doing much better though and I’m now on a maintenance dose of anti anxiety medication rather than the stop an elephant in its tracks sized dose I was on before. It is thought I have PTSD and that will be investigated going forward because although I know I’m much better I also know I’m still not great when it matters - hospital visits. I also get quite anxious when my children and grandchildren have health problems. I did however manage to be my daughters birth partner when she had her second baby recently but I was really having to do lots of keeping calm along the way. Suffice to say that she didn’t know I was quit nervy at times but this was the 8th birth of a grandchild I’d been at and I certainly felt the difference.
I hope this post doesn’t make me come across as ridiculous because I’m not. I’m just a woman who’s OC journey was too much on top of a very hard decade and I had been left with no reserves to cope with it. In reality I’m living my best life, I have my very large family of children and grandchildren that keep me very busy, then there is my darling adult son who’s severely disabled and who lives with me and his team of carers. I also have my voluntary work and enough of everything else to fill my days in general. I’m happy.
Oh and I also travel, it’s something I started doing when my then marriage of 35 years broke down 12 years ago. I go all over the place and the furthest I’ve been is Alaska where I went whale watching. I also like Europe, Italy and Switzerland in particular and I’ve spent quite a lot of today choosing a random airport somewhere new to arrive into before making my way to the Uk by train just jumping off where ever I fancy along the way. It’s how I’m going to celebrate my two years in November when I join the 10 percent club.