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iamstillme profile image
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Hi everyone, my name is ally> i have recently been diagnosed with primary peritoneal cancer. So far 3 rounds chemo and surgery and awaiting to restart chemo . I am 46, married and have two kids 16 and 14

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iamstillme
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14 Replies

Hi Ally

I am sorry to hear your diagnosis...,...but welcome you to our group....... ( the club that no one wants to join).....you have come to the right place for support, the people on here are great and will support you anyway we can..... ..if you want to rant and let off steam...that's ok.......if you want advice there are plenty of knowledgable people on here... ..or simply share..we are here.

Best Wishes love x Gwyneth x

bosue profile image
bosue

Hi Ally,

I hope you find this forum as helpful as it has been for me, it been a lifeline to have so much support, and questions that you will get answers for, good luck with your treatment. Love Sue x

SandyL profile image
SandyL

Hi Ally,

So sorry to hear about your diagnosis. I know you'll reap lots of information and support from this lovely group. Ally, could I ask you what stage the cancer was at diagnosis? Also, how many chemo's are scheduled for you now that surgery is behind you?

I ask, because I had six chemo's after surgery - the first of those on the very day I was discharged from hospital from having the surgery (8 days). I simply left the hospital, walked over to the cancer clinic (same building) and had the first of 6 chemo's that very day. I was very lucky because I didn't suffer a lot through chemo - I hope you didn't (and don't) either.

Anyway, I know you'll enjoy being a member of this group, even though the reason you're here isn't one bit nice or fair.

How did the kids take your diagnosis? They are at a sensitive age, that's why I asked.

Take care ....

Sandy.

iamstillme profile image
iamstillme in reply to SandyL

Hi Sandy - 1st the kids . Really hard for them i think as they are at an age when you are not able to hide anything . 14 year old reading stuff on line and has realised that treatment is for remission and not cure. I have tried to reassure him. We have been open and i have told him if there is anything to worry about then i will be honest with them . These are the times i cry-not for myself but for them and this will be what keeps be strong and fighting this all the way. The oldest one is 16 and she is busy with exams-has not said much only that it is not fair as all the drug addicts are ok and why me ? but why not eh as this disease does not choose between the good and bad otherwise we would not all be here. I decided to do a split with the chemotherapy . I had 3 cycles of carboplatin and paclitaxel-3 weeks break and then the surgery and now 4 week break and then restart the chemo . Last ca125 post 3 chemo was 25 from 480 on diagnosis.

How long is it since you had treatment and how are you keeping-well i hope . Do you have kids and if so what age and how did you manage

Ally

SandyL profile image
SandyL in reply to iamstillme

Hi Ally,

Yes, your kids are at a very tough and vulnerable age. When you talk to them, you can say that you know a lady (called Sandy) who was diagnosed with Stage 4 Ovarian cancer and she was given the "get your life in order" kind of chat ... AND ... she is still here 13 years later - in remission after first line treatment. They need to know that it is possible to beat the disease. There is a lot of negative stuff both on the internet and 'around everywhere' because everyone knows someone who "had it" and of course 'didn't do well' - but there are good stories out there too.

I was 53 at diagnosis. I have 4 sons, the youngest was 17 and in his final year at high school (we live in Canada). The oldest 2 boys had left home - one was married with no children. The second oldest had met his future wife, but the youngest two were still at home and gave me so much love and support, it was amazing. My two oldest boys lived in Calgary, Alberta at the time, so they came to see me every day when in hospital. The oldest was (is) married to an ultra-sound technician and she was led to believe that anyone that was a Stage 4 just didn't make it. You should see her now. If any of the Doctors give the doom and gloom story to women with OC, she jumps in and says, "Just a minute, my mother-in-law was diagnosed with Stage 4 and she is alive and well!" So in her own sweet way she is passing along hope to those newly diagnosed women.

Ally, It sounds as though your Ca 125 is going in the right direction. I'm sure that by the time you've finished treatment, it'll be right where it should be. Mine was 9800 at diagnosis - it's "8" now!

So, I gather the plan for you was 3 chemo's before and 3 after surgery? If, after you've finished the 3 cycles 'post-surgery' the Ca 125 hasn't dropped some more, will they consider doing more if necessary?

Well, everything does sound very good for you. Stay positive and look for other OC survivors because that will give you the hope that you'll make it. Also, I know you didn't ask for any advice, but if I can offer just a wee-tidbit .... When you've finished treatment and are NED (no evidence of disease), please do something else as a preventative measure. I repeat to myself, "If the cancer came to me in the first place, what is to stop it from returning?"

Cut out the bad fats, sugar and white stuff. Eat lots of fruits and veggies (organic preferably), exercise as if your life depended on it - walking outside is great, because you need the sun. Having cancer is to have the fight of your life. Make it your mission to beat the cancer and enjoy every day because each day is a gift.

Hang in the Ally, you can do it!

Love,

Sandy.

iamstillme profile image
iamstillme in reply to SandyL

Hi Sandy i cannot believe that you have come through this and how well you have done . It is really positive and inspiring . My oncologist is very positive (maybe not so the surgeon) but i have decided that i have a lot of living left to do and i will fight each step of the way

Thanks for getting in touch

Ally

MargaretJ profile image
MargaretJ

Welcome Ally! This is an incredible set of people who will help you to cope as you deal with all the vagaries of treatment! I'm sorry that you qualify of course but, given that you do I have no doubt you will find the people here as great as I do!

Margaret

Tess profile image
Tess

Hello Ally, welcome to this wonderful forum, it has been a great help to me since my diagnosis last year. I hope you too will find confort and support from all the lovely ladies on this site.

Love Tess x

beckyh profile image
beckyh

Hi Ally

I was 46 when diagnosed and I have three children who were 14 (terrific twin girls) and 16 (lovely eldest son) at the time of diagnosis. That was in 2009. I was diagnosed with 2c ovarian ca. Lots in common there. If you'd like a chat about the kids, coping, exams, chemo or anything else private message me. If not you'll find lots of information and support here.

wishing you all the best

Becky xx

suzannehadenough profile image
suzannehadenough

Hi Ally..

I was 37 when diagnosed, I have A teeneage daughter. and i know how tough the whole process id for you.. As do all the ladies on here..

All i can say to you at this time is that we will all be here for you any time you need us to be. And we will hlep and understand best we can..

lots of love

suzanne.. xxx

Meryl profile image
Meryl

Hi Ally

Sadly lots of experience between us all on this site with many of the different forms of chemo and treatments. Also you'll find answers to questions you may think are silly or trivial or forgotten to ask your care team, and although we're all different in how we respond, I've found so much help and support since the site started I'd be lost without it. Good luck. Meryl XXXXX

wendydee profile image
wendydee

Hi Ally

Welcome to our strange but wonderful place. I wish you didn't have to find us, but I hope you will be glad you did! Just make sure you're never feeling as if no-one understands. We all have different ages, different experiences, different diagnoses and different lifestyles. We are however, united in wanting to help and support others. Some of us have been around for a long time, I'm ten years since diagnosis and still going strong ...life can still be good!

Love Wendy xx

iamstillme profile image
iamstillme

Thank you all for the lovely welcome . Already feel this site is wonderful-although as said wish i didnt have to use it

Ally

Hi Ally

Sorry you have had this diagnosis but take heart!! I was diagnosed in 2010 with stage 4 and thought that was it for me. This site showed me that everyone is different and there are a lot of wise and wonderful women here who will support you when you are finding the going tough. I was under the impression I couldn't be cured but my oncologist said that there is a chance it may not return so I live with that hope and I'm feeling good and enjoying life so much more. I too shed lots of tears for what my children were going through............but that's what mothers do isnt' it? Lots of hugs and love coming your way.

Chris x x

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