Feeling reflective..... : Oh how my priorities... - My Ovacome

My Ovacome

14,508 members β€’ 17,041 posts

Feeling reflective.....

LittleSan
LittleSan
β€’46 Replies

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.

πŸ’πŸ’πŸ’

46 Replies
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πŸ¦‹πŸ¦‹πŸ¦‹πŸ¦‹πŸ¦‹πŸ¦‹ heart goes out to all our lost teal sisters very sobering πŸ¦‹πŸ¦‹πŸ¦‹πŸ¦‹πŸ¦‹πŸ¦‹πŸ¦‹πŸ¦‹

Hope everyone is a well as they can be xx

LittleSan
LittleSan in reply to BeeWild

Yes the joy of having this support is tempered by the losses. OC folk tend to be the most wonderful people. Xx

True words -- our priorities have changed.

Take good care of yourself, LittleSan.

XXOO

LittleSan
LittleSan in reply to Nancy222

You too Nancy. Xx

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 !😊😎

Sounds fab, this blast of great weather has been such a boost. Xx

Just reading out those names brings tears to my eyes, everyone of them supported me when I set out on this journey. πŸ¦‹πŸ¦‹πŸ¦‹πŸ¦‹πŸ¦‹πŸ¦‹πŸ¦‹πŸ¦‹πŸ¦‹πŸ¦‹

Ellsey xx

😘😘

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.

Xx Netti xx

Absolutely, you too Netti. Xx

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

LittleSan
LittleSan in reply to Nicky100

Thank-you Nicky. Xx

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

Thank you so much. Xx

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

LittleSan
LittleSan in reply to Btte

Julie is finding her regime tough but has turned a corner to feeling a little better. She is such a treasure.

Much love to you Bridie, good to hear from you. Hope you're feeling fitter soon. Sandra xx

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.

Take care.

Liz x

Thanks Liz. Xx

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

LittleSan
LittleSan in reply to Maxjor

Thanks Judy. Xx

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.

Ooh I'm so with you on noticing more, especially this spring; it's been spectacular. Xx

Thank you for such an eloquent and moving post - all our friends who are no longer here live on in our memories.

I also feel that I am living with a heightened sense of awareness of the good things around me.

Best wishes to all, Ali x

LittleSan
LittleSan in reply to Alifit

πŸ’žβ€

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. β€œ...and how are your bowels?”

Ugh lol

May every day be what you want it to be

LA xx

LittleSan
LittleSan in reply to Lily-Anne

Ah yes Gwynn's poems....

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 πŸ’ͺ. 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!

Good luck with 2nd line.

Sandra xx

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.

Hope your chemo goes well

LA xx

God it’s hardπŸ™ For Thursday results x 2 of us xx

LittleSan
LittleSan in reply to jools53

πŸ™πŸ™. Where are you Jools? I'm at the Christie 1.20 appt. Xx

Maidstone 12.30 xx

Ooh I'm travelling down to Maidstone after my appointment! My daughter lives in Headcorn. Hope all goes well for you. Xx

Good luck for your results tomorrow got everything crossed for you xx

Let us know how you get on x

LittleSan
LittleSan in reply to BeeWild

Thanks Ben, will do. Xx

LittleSan
LittleSan in reply to LittleSan

Bev even πŸ™„πŸ˜

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!

Love,

Madeline xxx

Ah Thank-you Madeline. πŸ’ž xx

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.

Going to make sure I have a great summer! Xx

harpist_UK
harpist_UK in reply to LittleSan

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.

LittleSan
LittleSan in reply to harpist_UK

Oh Christine, I do hope they get a good plan for you soon. I'm sure you are making the best of things though. It's just how you are!

It's a devil of a disease.

Love and strength to you.

Sandra xx

harpist_UK
harpist_UK in reply to LittleSan

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!

Hi Sandra, I love this post, thank you for sharing it. I hope your CT scan went well.

Xx

Thanks Elizabeth. CT results weren't great but they could have been worse. I start back on chemo in September. Xx

I am new here too but a great post, indeed priorities have changed for all of us . I send much love to you and hope you are doing Ok xxx

Thank-you Jules. Welcome on here. I'm doing fine despite careering headlong into chemo again soon.

Hope you're well. Xx

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