First post - my story so far.

[JackyYorke]

Hello everyone I've been on the forum for a few months, quietly finding out what I need to know from all you knowledgable people. You have helped me a lot, and I really appreciate it. I realise everyone's story may have something useful for others, so here's mine (so far!) I'm 58 years old and was diagnosed in November 2018 with stage 3c ovarian cancer, which had spread within the abdomen. I thought it was all over for me, but three weeks later I had extensive surgery (4 operations in one, my surgeon said), hysterectomy, colostomy formation, another section of the bowel removed, appendix removed, diaphragm stripped and 'all visible cancer cells removed'. In February, I began the standard Taxol/Carbo chemo, which finished at the end of May this year. Both the op and the chemo were very gruelling. I had to have the chemo reduced after 3 rounds and was in agony with constipation. But by the end of chemo, my CA125 level was 9 (though they never told me what it was to being with!) I am now waiting for my post-chemo CT scan at the end of August. I still get fatigued, and the colostomy is a nuisance, but I have no pain and am hopeful about the outcome of the scan. I'm also waiting for the result of a BRCA test. I'm in Norfolk, UK and under the Norwich and Norfolk hospital, in case anyone else is? There's lots more I could say but will save for another time. Thanks for being there and I hope as time goes on, I'll be able to give back some of what I've received from you all.

[Hidden]

Welcome, JackyYorke, to the club no one wants to join...but since you're here, know that this club is full of wonderful, wise, experienced, kind, honest and open women who are willing to help you in whatever way they can. They're really wonderful.

I'm so sorry that you have had to deal with all of that. This disease is very unkind. It seems however that you have done all that you can do for the moment and have positive results thus far. A CA125 of 9 is something many of us strive for so Congratulations!! Long may it continue.

You're going to feel low for awhile to come, but your body will begin to show signs of recovery soon. Do be mindful of how you are feeling and if you are not well or not where you feel you should be, please let your CNS or Oncologist know. Take this time to focus on your self - on healing, on nutrition, on as much activity as you can tolerate, etc. Do the things that make you happy and spend your time with the people who bring you joy.

You've walked a rugged path thus far and you deserve some time to "simply be."

Do keep us informed as to how you are doing, please let us know if you have any questions and know that you are among friends.

[Lyndy]

Hello Jacky

Thanks for sharing your story and that you are at the NN ... I am Ipswich but have met folks from Norfolk who say that hospital is pretty good for OC. I was diagnosed in 2015 stage 4 but touch wood still going.

Sometimes the aftermath of treatment can be a tricky time because you are free of the busy ness of treatment but not back to normal. Hope everything goes really well for you xx

[Seasun36-uk]

Hi Jacky,

Welcome to the forum. There is phenomenal knowledge & support here.

Thanks for sharing your story. It sounds a bit like mine. It’s a shock - the diagnosis & the treatment - but it sounds like you are doing very well.

Keep going & climbing & enjoy ‘now’ after having completed so much treatment! 🙂

Best wishes,

Linda x

[Di16]

Hi Jacky. Welcome. I live in Suffolk, & am normally treated at Addenbrookes, but in 2017 I had some further surgery to deal with a recurrence at Norwich. Surgeons at Addenbrookes didn't want to operate, & the oncologist who was treating me looked for a second opinion. He told me the gynae department at Norwich Hospital has a good reputation, & the surgeon I had, Mr B (I'm not sure if we're allowed to name names), was recommended to him.

I'm sorry you still have trouble with fatigue, though I think it can take some time to fully recover from such a big operation & the effects of chemo. I hope your health continues to improve, & you have a good result from your scan

[gmc920]

Hi Jacky,

Welcome to the forum 😊 I’m in the US, but I’ve found this forum to be the best. The people on here are wonderful, so supportive and helpful.

Congratulations on getting through your treatment! Your CA125 of 9 is great. Wishing you all the best!

xx Gina

[Hidden]

Thanks for sharing Jacky and welcome. ❤️❤️❤️

[Solange]

Hello Jackie, thank you for sharing your story with us. I'm glad that you found this forum. I was advised to join it by my CSN but I didn't want to and didn't feel very confident because my computer skills were almost zero. However, one day my husband was out and I was trying to decide what to do. I suddenly thought "I wish I could meet someone else with Ovarian Cancer" - then decided I would join Ovacome/ Health Unlocked.

I was sooo glad I did! I didn't dare Post anything for quite a while but it was so good to read other people's stories.

Anyway, Congratulations on your super low Ca125 level and good luck with your scan later this month. I think the time when you finish Chemo so don't see the Chemo staff regularly is quite a strange time. A bit scare-y!! 🤞Hope you hear good news from your scan and don't have to wait too long for the result. I'm in the process of a seven week wait to hear what mine shows. 😏 Love, Solange 😊