I have stage 4 ovarian cancer and am waiting fo... - My Ovacome

My Ovacome

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I have stage 4 ovarian cancer and am waiting for chemo I had been in hospital and they said it was wind. I am feeling scared

Woody64 profile image
27 Replies

Can anyone give me their experiences. It is in my left lung bowel and the omentum.

Sue

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Woody64
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27 Replies

Hi Sue

This is a rubbish disease and hard to deal with for a lot of reasons. The friendship I've received here has been a huge support so I'm just saying .. welcome to you. Xx

Woody64 profile image
Woody64 in reply to

Hi Tina, thanks for replying to me. Sue

wendydee profile image
wendydee

Hi Sue, I can't help with info but there will be plenty who can, I am sure. Just wanted to say hello and welcome. As Tina says, it's such a good site when you're going through an uncertain time and feeling very uncertain of what's ahead. How long are you going to have to wait for the next stage in your treatment. Is there some chemo planned, or another option?

Keep in touch, wishing you all the best

Love Wendy xx

SandyL profile image
SandyL

Sue,

I understand how scared you are and my thoughts are with you at this scary time in your life.

Your story sounds similar to mine, starting almost 15 years ago on March 28th 1999. Keep reminding yourself that you are not a statistic. Regardless of what your medical support team say to you (or imply by lack of eye contact and a certain 'body language') ... Remember and believe that you can beat the odds, just as I did. I was also diagnosed with Stage 1V disease with massive pulmonary embolisms and cancer on the liver, omentum and umbilicus.

You didn't ask for advice, but if you had, I would suggest you do whatever you can for yourself ... e.g. a good cancer prevention diet, daily exercise (walking is great), omit sugar, white stuff and bad fats from your diet. Eat foods with Omega 3 in them (salmon, fish, Flax-oil and flax-seeds etc). Don't ever lose track of the fact that you're fighting for your life. Avoid stress at all costs and let everyone around you pamper you to bits. I could say much more Sue, but you get the idea. I hope you can start chemo soon. In my case I had 3 chemo's prior to surgery and 6 after surgery. After the 5th post-chemo chemo, I was in remission but I treated the last one as a consolidation to my remission.

I hope your chemo experience is as positive an experience as mine was. I used to look forward to going for chemo and made a new dress for every one. I bought a gorgeous wig with straight, shiny blonde hair - much nicer than my own hair (blonde and curly) and put it on every day - along with my make-up. I felt that if I tried to keep my appearance looking good, it would make me and those around me feel good too. I never looked sick at all and folks that saw me couldn't believe I had cancer.

Keep posting and let everyone know how you're doing. We've all had all those thoughts you're thinking and actually come through thriving. It's certainly a process. BTW, I was 53 at diagnosis - I'll be 68 on March 27th. I appreciate every day of this wonderful life.

Take good care of yourself. I'll be thinking of you in the days ahead as you face this new reality with HOPE!

Sandy.

Woody64 profile image
Woody64 in reply to SandyL

Hi sandy, thanks for replying to me. It all the waiting around. My stomach is stopping me from doing anything and I cannot eat. You do sound very positive and I admire that you have come so far. Love sue

thesilent1 profile image
thesilent1 in reply to SandyL

Dear Sue. hang on in there. things will improve. i remember being frightened prior to my chemo commencing but you know, it was ok. I couldn't wear the wig I was given as I had surgery first which sent me straight into the menopause however I got lots of nice scarves and tied them to the side, people thought I was just wearing a fashion accessory lol. I too wore my makeup. not only did it make me look better but I felt better wearing it. take ownership of this disease and that will help you. All the best for your treatment. Ann

Dear Sandy, thank you so much for your detailed response to Sue. i was diagnosed with stage 3b in June 2013 and just to read how long ago you were diagnosed gives me tremendous hope. thank you most sincerely. Ann

Woody64 profile image
Woody64 in reply to thesilent1

Hi ann, thank u so much for your reply, it's all the waiting around with nothing being done. I am going through a very negative time at the moment even though my family have been extremely supportive. Sue

thesilent1 profile image
thesilent1 in reply to Woody64

I think that is only natural. I too got very negative when i was waiting for the results of CA125 and MRI scan and after i got them and had to wait another 4 weeks for my surgery, i think i had myself 6' under. i decided to continue working for as long as i could as working as an NHS medical secretary i had to focus my mind on other patients and not myself, in fact I managed to work right up to 2 days prior to my admission. I know this helped me, if I had stayed at home I would have been visiting Dr Google lol - definitely not recommended. it's hard trying yo be positive for your loved ones when inside you feel like you are falling apart. my chemo finished one week before Christmas and at review for CT scan results in mid Jan, I was told there were no visible signs of the cancer so like Sandy am now in remission. I hope you will have a good outcome. do you have a hobby? if not, perhaps now is the time to look at what you might like to do. knitting, sewing, card making perhaps. Good luck. Ann

Woody64 profile image
Woody64 in reply to thesilent1

Tks Ann for taking the trouble so glad that things are now good for you sue x

Woody64 profile image
Woody64 in reply to thesilent1

Ann how were you able to work right up to your treatment. There is no way I could work at the moment my stomach is filling up all the time and I am having difficulty eating. Barely able to walk around. Sue

thesilent1 profile image
thesilent1 in reply to Woody64

Hi Sue, to be honest it was a struggle but my office colleague had gone off sick on 14 Jan 13 and I ended up not only working for my own cons surgeon but hers too. I was very stressed and dismissed how I was feeling due to the stress. I had noticed The button on my trousers wouldn't do up and put it down to having eaten too much over Christmas. But as time went on my abdomen was getting bigger. I finally went to GP on 6 Feb 13, she sent me directly to A&E, who sent me up to gynae where I underwent TV USS by an F2 doc who missed the cyst and told my GP there was nothing wrong with me gynae wise. She then started treating me for IBS. I finally saw a cons gynae surgeon as a PP in May. Apart from 6 Feb, I never took any time off. I bought bigger loose fitting tops, lived on pain killers and each night collapsed into bed as soon as I got home. I couldn't sleep well either as I was so uncomfortable. Myself and my colleagues were under so much pressure as staff on maternity hadnt been replaced, staff on sick etc I didn't feel I could add to that. How stupid was I? I'm still off work coping with fatigue and I am not rushing to get back!

Woody64 profile image
Woody64 in reply to thesilent1

I think you are amazing to have pressed on like that. What a super star. X

baxbird profile image
baxbird in reply to SandyL

Dear Sandy,

Can I too add my thanks for your positive thoughts and update. It's good to hear.

jennybutler profile image
jennybutler in reply to SandyL

How lovely to hear from you again, I did the budwig diet and looked very well wonderful for the skin. glad you are still doing well.

Love Jenny xxx

SandyL profile image
SandyL

Sue,

I also couldn't eat - for quite some time. Bowels lad quit working. After about a week taking Lactulose and stool softeners, things started moving again (this all happened while in hospital). My stomach looked like I was 9 months pregnant. I couldn't tie shoes - was wearing maternity dresses because nothing else fitted.

Hang in there. Sandy.

Seren18 profile image
Seren18

Dear woody andSandyL My daughter Jaci has been exactly the same as both of you and it has been great reading your messages, it helps us to fight on and hope for a wonderful new cure.Gillx

Madz profile image
Madz

Hello Sue I was in exactly the same boat as you in October 2012, with disease to both lungs, omentum and bowel. I was in such a state of shock as had been feeling well (or so I thought) just prior. I remember posting just like you, and getting a real boost by reading Sandys lovely, uplifting response to me - along with lots of support from ladies, some of whom I have never met but all of whom I consider true friends. I had surgery straight away and then 6 cycles of chemo following and am in remission, my mets are still there but small and I have been back at work full time for a year now. I live every day with a spring in my step and like Sandy dressed up and wore my make up and tolerated chemo pretty well. It's possible that I will need more chemo by the summer but I am working hard on my spiritual awareness and being kind to myself, but not limiting my life in any way. Some may say I am deluded but I truly believe that if you feel defeated by OC then it is much harder to keep moving forward, you are in a scary place right now and that little person on your shoulder never truly goes away but it's voice gets quieter and we don't all need to shout to be heard. Trust your instincts, listen to you body and at all times allow yourself to love and be loved.

We are all here for you on your journey much love Amanda xxx

Woody64 profile image
Woody64 in reply to Madz

Hi Amanda, thank you for your kind reply. I am afraid I am in a very negative place at the moment. I was working until 4 weeks ago, had felt not quite right but ok. My stomach started to swell and I took some Andrews thinking that might help but it didn't. I went to the dr on Tuesday and she said she thought that it was my divaticulitis I said I didn't think so, but she still prescribed me x 2 antibiotics by Thursday no better admitted to hospital who diagnosed the same sent me home.back in After the weekend. Eventually had a ct scan then told it was stage 4 oc which had spread to my lung bowel around the heart and the omentum. Totally shocked hadn't thought it was anything like this . Regards Sue

Madz profile image
Madz

Hi Sue will send you a PM - xxx

Fernanda profile image
Fernanda

Hi, Sue.

It´s really a shock when we receive the "stage IV" from the medical team. In my turn, I received this information but with another one wich was worst: my cancer is rare - clear cell - and it´s chemo resistant. I cryed, screamed, but after that I decided to fight. And, besides the bad statistics, I´m still here - and I´m very well, despite cancer is still in my lymph nodes after 3 surgeries and 3 chemo lots. The dread notice was in March 2012, and last year the physician said at first he was thinking chemo would control cancer for only 3 months... But, thanks to God, I had a good response with the second line chemo, and now I´m enjoying my life as ever.

Keep your faith, statistics are only numbers. And you will discover you´re much more than a number, or a patient - you´re a woman with a story, with many will to live and will find a lot of support and friendship here.

Hugs, Fernanda

Woody64 profile image
Woody64 in reply to Fernanda

Thanks Fernanda. Glad that you continue to be well this awful thing. Sue x

Dear Sue,

I am so sorry that you find yourself in this situation, we all know how you feel.

Thinking of you and praying for a good outcome.

Love x G x

Woody64 profile image
Woody64 in reply to

Thanks Gwyn for your kind thoughts

Whippit profile image
Whippit

Hi Sue

Just sending you a warm welcome. Just having this site and people to chat to will help you along even the most difficult of paths.

Let's hope you are given a treatment plan very soon. I was absolutely terrified when I heard I had to have chemotherapy but once I visited the day unit I found it was all really OK and you're going to be well looked after.

Take care, and keep posting so we can keep you feeling more cheerful. xxx love Annie

Woody64 profile image
Woody64 in reply to Whippit

Thanks Annie

Dear Sue, from another Sue. I am so sorry, it is terrifying all this stuff. I was 3c and like you working, feeling not right but ok. I just thought I was overtired. That is how insidious this thing is. But so many ladies on here are living, fighting and getting on with life despite it, there is undoubtedly hope. We are told today that OC can be treated like a chronic disease, for years and years. I am not sure I would believe it but the ladies on here are living proof. That was an incredible reply from SandyL, and a story I had not heard before - but there are many others too.

Focus, if you can, on practicalities. Things get a little less confusing and terrifying once there is a clear plan of action. For you, some things will and others won't be right, as for us all : but what you will have is clarity on that, a schedule of treatment. There will be a gazillion questions buzzing around your head. Write them all down, and ask them - not only to get the answers you need, but so you also clear your mind of worry about forgetting to ask something, as well. When you have your treatment plan that is something concrete you can grasp, and you can focus on the immediate next steps and phase rather than some nebulous scary future. I am sorry you are here, but glad you found the site.

Love

Sue xxx

Woody64 profile image
Woody64 in reply to

Hi sue thanks for your comments

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