Summer 2022: hi ladies, It’s not at all like me... - My Ovacome

My Ovacome

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Summer 2022

Willowsmum51 profile image
39 Replies

hi ladies,

It’s not at all like me to post, but I thought this might resonate with some of you ladies, who like me, are so grateful to still be here, be well.

I also appreciate that there will be many of you ladies at the beginning of your journey or having a really tough time, I hope this gives you hope.

my story is, stage 4 incurable, diagnosed September 21, had chemo, surgery, plural effusion, 18 litres of aceties drained. Did not get NED after surgery. Had sever allergic reactions to Taxol, another one I can’t remember and then on the last round I became allergic to carbo. Found the Gem/carbo hard. Avastin failed.

I’m now on Niraparib, my CA125 after 2 months is stable at 18, I’m feeling like me again after two years! My bloods are the best they’ve ever been and I don’t have any side effects so far! My oncologist says this is ‘encouraging’ but as we all know things can change quickly with this disease.

I’ve wrote a few words about this summer and how grateful I am to be here . Hang on in there ladies, have hope xx

Thank you Summer 2023.

Thank you oh nature, your beautiful trees, the joy they have given me, the branches seem so much more fuller, lush and greener this summer, your spring blossom, so much fuller and prettier and fragrant, your lavender so abundant, covered in 🐝. your green hills so much more vibrant.

The anticipated Autumn that I know will be as spectacular, with colours of bright amber, rust, reds, the winter that will bring a beautiful light, cold frosts, log fires, scented candles, cuddles on the sofa, my dog by my side, and a little bit of snow, but maybe just for a little while. Oh how I pray that I’ll still be here to see that. 🙏

Thank you to those random people,

those lovely people that we met, by chance along the way, the places that we went to on our days out that led us to meet those people, impacting my life like little jewels to brighten my day.

Thank you for showing me love, the real love, the ones who are there with you, during the good the bad and the ugly, thank you for bringing those angels into my life.

Thank you for my amazing husband and my children, my family. I am blessed.

Thank you, Summer 2023 For making me see my life in Technicolor this year, thank you for making me see how beautiful this world is, thank you for directing me, in a strange fated way to the possibility of an afterlife and angels. Thank you for giving me that peace, thank you x

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Willowsmum51
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39 Replies
Willowsmum51 profile image
Willowsmum51

It should be Summer 2023! I can’t seem to edit it! I’m blaming chemo brain!

bamboo89 profile image
bamboo89 in reply to Willowsmum51

Great, uplifting post, thanks. Just wanted to ask if the other chemo you reacted badly to was Caelyx?

Willowsmum51 profile image
Willowsmum51 in reply to bamboo89

Yes it was! So I then went on gem/carbo and after the first one became allergic to the carbo ! They gave me loads of premeds and skied it down and I managed to continue with it. Gave you had the same issue? Xx

bamboo89 profile image
bamboo89 in reply to Willowsmum51

Gem I can't have because of a lung condition - I've had carbo twice, but the second time it was only a partial response, so they count that as me now being platinum resistant. They tried me with Caelyx and I screamed within about ten seconds of its going into my arm because of the pain in my chest on the left, felt like someone was crushing my heart, so that was stopped and I can't have that one again. But I've never had taxol, always avoided it, and given how many allergy reactions to drugs (not just chemo) I experience, I've just got a feeling taxol might be another one I react to.... and that maybe, if you react to Caelyx, you're more likely to react to Taxol... but its just a theory. Its now the only chemo on offer to me, taxol once a week for six months, which I've said no to the for the last year, but I might try it if I start to get really bad symptoms that can be reduced by chemo. I'd rather remove my eyeballs with a fork than have that treatment, but I am quite curious to see if I react badly to it....

Willowsmum51 profile image
Willowsmum51 in reply to bamboo89

Yes I was allergic to taxol. That was my first severe allergic reaction, on the very first chemo I had, it was not nice, I thought I was a gonna! Very scary. I agree with you the thought of weekly taxol for six months sounds hellish, but as I understand it they only give you a small amount and I know some ladies that do OK on it! It’s totally off the table for me. Sending you much love and hope you can enjoy some time off treatment for a while. Give yourself a break. Take care xx

0462County profile image
0462County

Such wonderful news after all you have been through. You have given me so much hope. Love and hugs Beth xx

Willowsmum51 profile image
Willowsmum51 in reply to 0462County

Oh I’m so pleased Beth xx

Jennifer1959 profile image
Jennifer1959

so lovely to read your story of hope and your beautifully written love of life ❤️

Willowsmum51 profile image
Willowsmum51 in reply to Jennifer1959

I feel a bit embarrassed writing it, but thank you xx

BallyMacfan profile image
BallyMacfan

Like you I was diagonised ovarian cancer sept21 and now on niraprib I know things can change fast but at the moment it's good.That says it all the lovely people we meet on this journey jewels to brighten my day.

Hope it continues for you .

Thanks for sharing jaynex

.

Willowsmum51 profile image
Willowsmum51 in reply to BallyMacfan

Praying the Niraparib keeps on doing its job for you. 🙏 it’s all we can do to have hope and enjoy every moment of the time we e been granted xxx

Shan67 profile image
Shan67

It is a beautiful poem - you should be really proud of it and you really express how important life is and how we should treasure it. I am also really pleased to hear how well you’re doing too and am sending you lots of love 💗 Shan xxx

Willowsmum51 profile image
Willowsmum51 in reply to Shan67

Hi Shan, good to hear from you! I hope you too are doing OK? Thank you, sending lots of love back to you xxxx

Motiva profile image
Motiva

That is beautiful in seeing the celebration of life and the world. We keep hoping and finding joy where we can. Thanks for sharing Willowsmum x

Willowsmum51 profile image
Willowsmum51 in reply to Motiva

If nothing else a terminal diagnosis makes you evaluate your life and appreciate everything that it is good in it. Xxx

Motiva profile image
Motiva in reply to Willowsmum51

It certainly does. Like looking through a kaleidoscope- colourful and ever changing. X

Laz66 profile image
Laz66

thank you for posting this xx

Beaver54 profile image
Beaver54

That’s beautiful. You brought a tear to my eye.

Keep on keeping on xx

Goodgirl98 profile image
Goodgirl98

beautifully written! So happy to hear you are feeling good. Long may the feelings of well being and gratitude continue. ❤️

Willowsmum51 profile image
Willowsmum51 in reply to Goodgirl98

Thank you. And praying for the same for you xx

A1r1t profile image
A1r1t

You've hit the nail on the head with them beautiful words, that's exactly how I viewed the world after my journey, the colour is more vibrant and you actually see and appreciate it more. Hope you make lots of happy memories with your family xxxx.

wendydee profile image
wendydee

That is so beautiful…may you have many more precious moments to brighten your life.

meaty profile image
meaty

beautiful words . just need that today . been a bit low. but the reminder how I view and appreciate the little things . and need to get out of this blip low mood. I think it's because today I have to go to urgent referral for bowels after bleeding from back passage . hoping all is OK but there is always that worry . wishing you all the very best on your journey. and thankyou for the inspiration I needed . xxxx

Willowsmum51 profile image
Willowsmum51 in reply to meaty

Oh that must be such a worry for you. It’s a total rollercoaster this cancer lark. I’m praying that everything is clear and pleased this brightened your day a little. Xx

Jholly4 profile image
Jholly4

Beautiful words, so glad you are doing well its reassuring to read the many positive stories on the forum showing how you lovely ladies are living life despite the poor hand you have been dealt. I am fortunate to have had NED from my debulking but appreciate this may not last forever. Like many with a change in health I too stopped the merry-go-round for a while and like you started to see the marvelous world around me. Nature truly is a great healer.

Jholly

Willowsmum51 profile image
Willowsmum51 in reply to Jholly4

I certainly is. Hope you continue to be well for a very long time xx

Mrs_Thomas profile image
Mrs_Thomas

This is one of the most beautiful things I have read and resonated deeply. You have brought tears to my eyes by the recognition I see in your perspective, that no one seems to understand. Since cancer and treatment I see the world in all its beauty. Take nothing for granted and thank the universe, god, my body and everything for being here to experience it. I don’t want to lose that clarity I got from being so ill by not being as Ill as I was. I hope we all keep the perspective we have gained. To see the beauty in the mundane and nature for the miraculous creation it is, from singing birds to the trees of the forest. Life is a gift and a joy even in the hardest of times. I send all my wishes that we all live to see and experience many years more! 💕

Willowsmum51 profile image
Willowsmum51 in reply to Mrs_Thomas

Thank you for your lovely reply. ❤️❤️

delia2 profile image
delia2

That is so beautiful and I feel the same way! Thank you for sharing this! Xx

Willowsmum51 profile image
Willowsmum51 in reply to delia2

Thank you 🙏❤️

Realistic profile image
Realistic

Thank you for your beautiful post , and long may it continue ❤ 🙏 love & hugs SheilaFxxx

Willowsmum51 profile image
Willowsmum51 in reply to Realistic

Thank you 😊 ❤️

BadgerBright profile image
BadgerBright

Hi Willowsmum51 Thankyou so much for your lovely words of inspiration. We must value the beautiful colours and light nature offers and the kindness of others. Feeling a bit low today as platelets very low so chemo delayed so your posting lifted my spirits. Thank you so much. Hope you keep well as the seasons follow. BB.xx

Willowsmum51 profile image
Willowsmum51 in reply to BadgerBright

I had low platelets many times on chemo, makes you feel absolutely rubbish and chemo can cause depression. Look after yourself. Hope the platelets come up again in the next few days and you get chemo. 🙏❤️

Tulips66 profile image
Tulips66

Thank you for sharing your beautiful insights into all the things you appreciate & look forward to everyday. One positive thing that comes to us all when we are diagnosed with OC is that we appreciate the things & the people that love us more now. Things that used to bother us before are unimportant now. I am delighted you are doing so well & I hope that continues. I was diagnosed in 2019 & even though I recurred in 2020 I am still here. My daughters who were 19yrs & 16yrs at the time are now in their 20's. They have both just finished college & have now got permanent jobs, so I appreciate everyday, that I am still around to see this. Like you I am on Niraparib since Jan. I have a Ct scan tomorrow & am hoping the Niraparib is working 🤞. I wish you many more healthy years ahead & thanks for giving hope, especially to any of the ladies on here who are newly diagnosed. A positive mind is definitely half the battle.!! XX

Willowsmum51 profile image
Willowsmum51 in reply to Tulips66

that’s amazing to hear! That gives us all hope! Praying you get a good stable CT! Keep in touch. 🙏❤️

Summergold2 profile image
Summergold2

long May it last!

Willowsmum51 profile image
Willowsmum51 in reply to Summergold2

Thank you 😊 xx

Pianoplayer731021 profile image
Pianoplayer731021

Thank you for sharing your beautiful words. Having a cancer diagnosis can make you appreciate things that we take for granted. Each new day is a blessing! Sending love, Donna

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