The ups and downs of our rollercoaster OC journeys

[Jholly4]

When I recovered from debulking earlier this year I gave myself a good talking to and vowed not to let myself go from blood check to blood check worrying about them. I was so pleased my first check showed bloods were normal so thought my plan was working but then prior to the 6 month check developed abdo symptoms with ongoing liver impairment. Further oncology bloods remaining normal ( relief) and ultrasound not seeing anything in liver causing the impaired bloods. Despite my earlier chat to myself and the reassuring tests I can't help but feel anxious and realise many of you feel this way as no matter what we say to ourselves this is going to be the case in our crazy OC journeys whether like me you thought you were in the clear from the first treatment or you are one of the inspirational warriors that amaze me with your resilience as you battle recurrence after recurrence. I had a CT today to see if there is anything other than scaring causing the discomfort and liver issue so fingers crossed will get the all clear again and get back to trying to put this all behind me again.

[Pixiepurple]

I so hope all goes ok for you. I don't think we will ever stop thinking about it

[carrotmunch5]

I am sending you lots of love and thoughts to your way. I do hope all goes well for you. It's emotional, mental rollercoaster! It's normal to feel anxious, worry and unsure. All overwhelming!

I've just had rollercoaster myself, 3 days of blood test after blood test for a new clinical trial. Screening on the first day showed my heamogrobin was a slightly lower than eligible level, so I was asked to come in the following day, and I did... It dipped a little, they gave me iron infusion, still low ( it takes for a bit to work) and sent me an email early evening; saying I wasn't eligible! I was so upset, I rearranged all my life commitments or cancelled, not happy. Option was to come in again for more bloods or back to oncology for chemo. So I went in. I wasn't willing to giving up yet. It takes nearly 3 hours each way to the hospital by train.. 😑 anyway, my heamogrobin was just under, so they discussed my case and giving me another chance. It it's still a bit low on Monday, they are giving me blood transfusion 😊. Looks like trial is going ahead. What a few days. One hurdle over, I am sure there'll be another, but we all keep going. Like you say; crazy OC journey.... Mental! 😁

Keep in a day, and slow breathe..... ❤️

[Lucylockpocket]

Hi there! Don’t be despondent and don’t beat yourself up about worrying! I have been living with this and had 6 lines of chemo so far, which is tiring! I view it like my poor friend with RA who takes medication which doesn’t always agree with her and she is often in pain and her life is now tailored because of her condition. I see it like that game in the fairground where you beat down one crocodile and another pops up! I was told from the outset that there’s not going to be an all clear, no more ops and no trials until they run out of options. That’s where I am now. Waiting for tests to see if there’s any clinical trials out there for me. Doing it for my family because some days I have been sooo tired I have just wanted to go to sleep! There is progress all the time and people fighting our corner in the background every day. OC might not be as popular as some cancers and is not funded as well but that is changing. Be heartened by the joy of each day. If you find your black moments are unbearable there is a lot of help out there. Macmillan and Ovacome have been great. Good luck! Merry Christmas 🎄

Sorry about rambling. Wasn’t supposed to be such a long reply 🤦🏼

[NewtonEmma1900 in reply to Lucylockpocket]

Totally agree. I too have friends with RA and It’s really tough for them. Getting GPs familiar with symptoms of OC really important and educating other women too.🎄

[Caroles1]

It affects all of us and I spent the first 2 years being anxious and worrying from appointment to appointment.I had debaulking and 6 months carbo/taxol and I am lucky enough to be 9 years cancer free.

I just had a lightbulb moment thinking why spend the rest of my life worrying and not making the most? Just deal with what comes along and make the most of your good days, make plans and do what makes you happy, no matter how small.

I had ascites and didn’t know what else may happen and if it had spread but 5 grandkids later, I have no time to dwell.

Shawshank redemption, watched in hospital at my worst possible moment.“Get busy living, or get busy dying”, gave me the kick up the b..m I needed

I wish you all the best, stay positive,

Carole xx

[Saintgermain]

It is a crazy emotional journey thank God for these forum's for support. At present I'm going thru my first recurrence, 22 months NED CA125 spiked from 15 to 500 by the time of my first infusion it was at 915 in August after CT, Pet scan and 2 biopsies early stage enlarged lymph nodes in pelvis and clavicle as I am platinum sensitive I just finished #4 of 6 Carbo/Taxol/Keytruda my CA125 is 22 and my mid treatment Pet Scan was clear resolved I'm sure other Teal Sisters can relate the Recurrence was much harder to wrap my head around than frontline Well-meaning Friends and Family don't understand the journey I don't expect them to its always in the rear view mirror.