Oh how my priorities have changed, I still worry about my family and all the usual concerns but since having OC my own personal priorities have changed so much. To live, to breathe, to poo and to sleep.... I am currently I am doing all four relatively well and for that I'm so, so grateful. CT results on Thursday so I'm hoping they reflect my current sense of well being.
I've also been thinking of our friends on here who we've lost. I'm sure there are lots more but I'm particularly thinking of Whippit, Trix, Francescahannah, The Silent One, Choski and Dolly's Mum. They always had sage words and wit and will always be missed. I'm sure there are many, many others who've been equally supportive but have slipped my mind just at this moment.
Wishing everyone well.
💐💐💐
Written by
LittleSan
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Hi I totally agree... life is sweet and we take pleasure in all the things we previously took for granted. I am nearly 3 yrs in remission and try to make every day count. My motto is get out whilst the sun shines... housework can wait! Hope all goes well for you and even can enjoy the sun whilst we have it . I’m going for a bike ride along the river tow path today and soak up the sun and breath the fresh air !😊😎
I think your words describe the balance we all seem to face with OC, being glad of the things which are going well and also being mindful of the losses, both simultaneously. I share your priorities, since for me they are like a set of barometers which indicate the state of things.
Take care and keep making the most of whatever works.
Thank you for thinking of those lovely ladies and remembering their names. This is a scary forum but it gives me hope and there is do much care and love here. May your wellbeing continue xxx
I am quite new to this forum ( although living with OC for three years at least...) so I don’t know these brave women. My heart goes out to everyone who has this disease but also to those that care for us all too. A kind reflective post and I wish you many more years of wellness. X
Hi Sandra your post has got me thinking this morning, all those people helped me so much in the early days of my diagnosis. I am also thinking about Soapsuds she introduced me to this site, It will be 6 years in July since diagnosis. I am now trying to get used to my new norm, not finding it very easy. My priorities like you have changed, when people ask me how I am I just say still putting one foot in front of the other. Hope all goes well on Thursday. I was also thinking about Julie, don't seem to have read anything from her for a while. Love Bridie
Hi little San. Totally agree with you. I really miss those you mentioned plus many more. I haven't been on here as much recently as sometimes it just gets too much. I don't fret about the little things and make sure I appreciate and enjoy all the simple but special things on life. It's not easy but we all only get one life!!!
Fingers crossed for Thursday for good scan results.
Great post and thank you for reflecting and saying what many think and feel. I’m currently in remission and do not take one day of it for granted. These women make me laugh, cry, feel supported, and have more wisdom than anyone!
Wishing you luck on Thursday and beyond. Oxox. Judy
I agree, living breathing, sleeping etc. seem so important at times. I am aware I seem to "see" more. It's as if my vision has increased as I walk down a country lane. I notice more, whatever the season, whether it's winter, spring, autumn or winter. It's as if my horizon, my peripheral vision, has increased and there's "more" to see. Perhaps, I'm just paying more attention.
This forum is indeed a valuable source of information and friendship and at the same time reminds us of old friends no longer with us. Sometimes, if I do a search I come across names from long ago, that I never knew. And as new friends join I am reminded how I felt when I first posted and of the helpful replies I got from our community.
I was friends with Annie (whippet) outside this forum and miss her advice to me, which had helped so much especially at the beginning
Badger, Gwynn and Amanda I also think about a lot and sometimes go back to their early posts just to dip my toes back in. It also reminds me of how naive I was about OC and how little in real terms the medical professionals tell us
I love the fact you mentioned poo as a priority it’s in fact almost an obsession lol. That’s one of the first questions every time I’m admitted any where. “...and how are your bowels?”
I think we're all a bit 'ostrichy' at first. My mum had OC and never recurred so I just had in my head that I wouldn't either. I had a great time in oblivion so perhaps it was the right thing for me!
Hope they're getting you on the right side in the hospice. Think of you often throughout the day and am right behind you 💪. Xx
Hello, I am new here I read these post to try and help with my diagnosis. I was diagnosised in Sept with Stage 1C clear cell they say that came from endometriosis. I went through 6 rounds of Carbo/Taxol and on my first scans of finishing chemo I had a small nodule in pelvis. Had surgery to remove it and getting ready to start second line chemo. I find the courage and encouragement from these ladies helpful. Any advice from anyone?
Relish each day and actively banish doom and gloom once you've given them a little time in your head. It takes a lot of practice but I've found this works for me. By not ruminating over future problems, it doesn't spoil the joy of a perfectly good day. Life's too precious to waste on worry.
I was lucky to be in Avastin for nearly 3 years during and after 2nd line (I had remaining nodules after 2nd line) but after being told with fingers crossed that I get 9 months between chemos, I've done over 3 years!
I was diagnosed stage 1C also and recurred in my pelvis. It’s three years since my recurrence so there’s lots of positives to take from your treatment. Secondary surgery was proven in the desktop 3 trial to prolong life so all good.
Hi Little San, so agree with you about changed priorities! I especially appreciate eating now after a period when I could hardly eat due to ascites. And if I don’t have the chemo aftertaste that’s a bonus! The pooing bit has also become a reason for elation ha ha!
I also often think of those wonderful ladies who have left us, they are gone but never forgotten. I met Annie and Trix at Penny Brohn, along with many other lovely strong women living with OC. when I get down I think of their example and how they lived every day and didn’t give up, and that inspires me to get out there and enjoy life.
You’re so right, life is too precious to waste worrying about the future. It’s tough sometimes to forget but it can be done!
Keep on enjoying the simple pleasures of life Little San, you’re another great example of positivity to us all!
update: Just back from the Christie. Tumour has doubled in size and got a new nodule too. Not enough to give chemo at the moment as the growth hasn't been rapid. Scan again in 8 weeks and review middle of August. Likely to start chemo in September.
Hi Sandra - thanks for your thoughts and reflections and also the update on your report from the Christie. At least the growth hasn't been rapid. Have a great summer! I am in limbo again - only had one Rotterdam then got a diarrhoea infection and never really got back to normal, so they wanted to do a colonoscopy - result of that is discovery of tumour in the sigmoid colon, so I am now awaiting review. Still walking around trying to make the most of things....! But it's all a bit scary.
I'm trying my best Sandra - you are right about it being a devil of a disease, but I do appreciate those who are helping and those who are clapping from the sidelines! On we go!
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Olaparib still working
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