Member Since:
24 November 2008
Posts: 8

Hi. I was diagnosed with stage 111B ovarian cancer in April 2008. Following surgery I completed 6 cycles of carboplat and taxol at the end of Aug. So I have eyelashes etc again - yah for that!

I have a question that I am reluctant to ask my oncologist as I suspect I'll be subjected to more tests and scans and I've had enough at present.

I have symptoms of vague abdominal discomfort, bloating, indigestion etc. I'm 62 and never had digestive problems of any kind until 6 mths prior to my diagnosis. I'm not sure whether these symptoms are suggestive of something sinister or the result of surgery and chemo. I'm due for a CT in Jan.

How do others feel 12 weeks out from chemo? 

Member Since:
20 August 2008
Posts: 16

Hi 'nh', i am replying from my perspective of the daughter, having seen Mum grapple with similar issues. So, Mum did several things, she had some natural medicines to aid digestion, and then in between her scans etc, she relied on her CA125 to tell her what was happening. If that was okay, she was okay (despite the obvious worries that come with a cancer diagnosis).

I cant answer how others feel 12 weeks out from chemo etc, so i shall let the other women chip in now!

If you did chat to your oncologist (which is the best thing to do) you can always suggest you will wait for your CT scan despite what he/she suggests, then at least they have some notes, and if you do get increasingly worried, your medical team are up to date.

Over to you!

Member Since:
24 November 2008
Posts: 8

Thank you for that. Unfortunately my Ca 125 was within normal limits just prior to surgery and  I've been told I can't rely on that. You're right, I should talk to my oncologist - I'm struggling with trying to regain some semblance of normal life and don't see the point of more scans as I don't want more chemo - maybe I'll feel differently a year down the track.

So, I need to decide to either live with these concerns - which are only vague at present - or 'front up'.

I've found that so much of this journey is head stuff. I'm so enjoying picking up the pieces of my life again after the 6 hell months of chemo....

I've avoided the internet until now as I was keen to deal with he cancer and chemo in my own way. The biggest stressor for me was everyones advice - always well intentioned. The classic was someone telling me on one of my worst chemo days when I had very painful neuropathy to 'put on some lippy and you'll feel better'. I was speechless! Advice from this forum will come from those who know what's like.

I'm not a 'groupie' kind of person but it's so good to have found you.

Thank you

Member Since:
5 October 2007
Posts: 35

Member Since:
24 November 2008
Posts: 8

Thank you for that Jools. It was very helpful. I can relate to everything you say. I've also had a bad time with neuropathy...

Since posting I've been to my oncologist with abdo pain, scanned and found an obstructed kidney. Mass only 15mm and we presume it's recurrence but hasn't been biopsied yet. Stent inserted but have ongoing abdo problems and seeing Oncologist and surgeon later today. I think they're going to suggest 2nd look surgery or maybe PET scan - I'll let you know. I haven't had any radiotherapy at this stage.                                                                                                                           Did you really have 2 lots of 6 cycles of chemo in 1 year! I take my hat off to you - I don't think I can face it again so soon. I like the sound of a PICC line - I've had 4 IV lines inserted in the last week not counting blood tests and veins are becoming hard to find.

I do have the Onc DNs calling which is great. Wonderful place to unload. So far my spirits have remained relatively bright as I  ,,,,,,,,,, WHOOPS. THIS IS NOELENE'S HUSBAND JOHN. SHE ASKED ME TO FINISH OFF THIS INCOMPLETE EMAIL AND SEND IT, BECAUSE SHE HAS BEEN ADMITTED TO HOSPITAL AGAIN, AS THEY TRY TO FIND OUT THE CAUSE OF HER LATEST ABDOMINAL PAIN. SHE IS NOT IN TOO MUCH PAIN TONIGHT, AND WANTED TO THANK YOU FOR YOUR EMAIL.

Member Since:
24 November 2008
Posts: 8

Hi again Jools. Sorry about that. A friend arrived, then had to hurry to get to Onc appt and admitted immediately with suspected partial bowel obstruction. Got home today after MRI etc. No obstruction but recurrent disease - bugger. 3 small tumours visible on MRI. Haven't spoken to specialist yet but think he will suggest surgery. Only 17 weeks since chemo finished....

John and I have decided to be in denial for the weekend - it's my birthday tomorrow - and deal with the decisions next week.

This feels worse than the original diagnosis.

Thank you again for your sharing your experience.

nh

Member Since:
5 October 2007
Posts: 35

Member Since:
20 August 2008
Posts: 16

Hi Noelene, I just wanted to say that I too have thought a lot about you lately, and taken some time to recall how it was for our family when Mum's disease came back. It was Christmas Eve, 2004 that she rang for her CA125 result, of course, once we had that info we just had to sit with it for the whole christmas period, but I have to say, our family really handled it well. Much like you and John, we all decided (without discussing) to be in denial. We went to the George Hotel in CHCH for Xmas Eve drinks, had a great Christmas Day, and Mum and Dad went off to their  holiday spot as usual. In tough times, you can have some very special moments, and I as a daughter wont forget our solidarity and resilience, and how the laughter we had over silly things, as Jools says, was just such a relief and felt so good!  We also did the 'prepare for the worst and hope for the best' thing, as time went by, and that hope for the best part - dont lose it, good things do happen and there is no reason why it cant be to you.

Member Since:
24 November 2008
Posts: 8

Jools and Rachel - thank you. This has been one of the worst days for me. The pain's a problem. Morphine doses escalating rapidly. I'm seeing my oncologist tomorrow and surgery has been suggested to palliate symptoms. I feel angry and so sad. The chemo was hard, I expected to have some time of feeling good again. Everything is moving so fast we can't catch our breath. My birthday was great, the house full of family and friends all day - we did really well with the denial, with the help of lots of distractions! It's all caught up with me today. When it's difficult to get pain under control everything seems so bleak. My 3 daughters and 1 son continue to astound me with their strength and wisdom. The pain of leaving them has just felt unbearable today. Especially my 5 grandchildren. I've been really involved with their everyday lives and was in delivery for each birth. Each one of you know how I feel, I'm sure. Tomorrow will be a better day, it has to be, I haven't finished Xmas shopping! I've always loved Xmas and have always poured my heart and soul into making it special for us all. My wonderful eldest daughter has assumed the 'mother mantle' this year.

I so appreciate being able to pour all this out. I'm determined my health will not be an issue on Xmas Day!!

I'll keep you posted after apt tomorrow - I think I'll feel better after the apt even though I know the news won't be good.

Member Since:
5 October 2007
Posts: 35

Member Since:
24 November 2008
Posts: 8

No hope offered. Too much widespread small volume disease for surgery. Chemo option nil - apparently I'm platinum resistant. So palliative care. I've worked with cancer patients for 20 years both as an oncology nurse and a palliative care nurse. I have lots of friends in the trade so am hoping to stay at home which is tricky with ca ov in particular. My closest friend has already got the roster together. I haven't been able to apply anything I know to myself.

This wasn't a surprise to me (I've felt it in my heart but told no one but the onc nurse) but my beloved family are devastated. And hearing it was hard. John has been waiting for a miracle. We told our 4 children last night - certainly the hardest thing I've ever had to do. So hours of intensive sobbing by all, lots of laughs as well and intense sadness. I've insisted that the grandchildren aren't told until after Xmas and we all enjoy a special Xmas day. I'm getting good at this denial thing provided I have distractions.

It's frightening how fast the disease is progressing. Started morphine 5 days ago and dose increasing substantially each day.

Right now I need to deck the halls with holly and prepare for the family coming early to open presents. I'm not responsible for any cooking - yah for that.

Thank you all for your imput - I have valued and appreciated it.

Member Since:
20 August 2008
Posts: 16

I am so very sorry Noelene. Our stories are so similar, repeated up and down the country, but the pain and journey we go through is so deeply personal and heartbreaking. As the mother, you sound just like mine, caring for everyone else, making sure they are able to cope in some small way, all the while coping with your own devastation. Your friends sound amazing, you already know you can trust your carers with your privacy and comfort.

If your children want to email me about anything, please tell them to, I had an email buddy when Mum was sick, and sending stuff into cyberspace as i thought it, really helped. I then did this for another friend while she was losing her father, and its a great thing we can do to help each other.  I am on rachel@silverribbon.co.nz.

I wish you well, my heart breaks for you all, but enjoy what you have. Get some photo's, take a holiday if possible, and say what needs to be said. Our Mum left us all letters, and i read mine every few months, its meaning changes as I get stronger, its my most treasured posession.  We are here if you need us.

Member Since:
24 November 2008
Posts: 8

Rachel, thank you. I think my eldest daughter in particular would like to make contact. We had a really special bitter sweet Xmas Day. We'd carefully kept the recent developments under wraps for the children but as my seven year old grandson left, he added 'I don't want you to die grandma' to his goodbye - aren't children amazing.

I'm now making memory books for grandchildren and letters and video for my precious four. I'm sorting special pieces of jewellery to give them etc. This process is really helpful especially as the girls are helping, so there's laughter as well

I woke yesterday morning feeling different, a different mind set somehow. I think I'm beginning to accept that I'm going to die soon. I feel peaceful most of the time. This is realy helpful for my husband and family. I can now listen to their pain without crying which enables them to really talk. My husbands pain is raw. Part of me feels bad for causing all this pain, my head knows better but I've spent my life trying to make things better....

I have great sadness that I don't think I'm going to be able to get to our beach house and say goodbye. It's always been my spiritual home. I'll see how thing go for the next few days but I'm so weak and tired. I'm painfree though which is a huge blessing - yah for morphine.

I think we're all doing well. There's nothing we're not talking about. I think it is a mother thing, to make sure everyone is going to be okay. They're all strong and I think they'll all manage.

I'll give your contact info to them all. Thank you Rachel. It's a comfort to know you're there.

Member Since:
5 October 2007
Posts: 35

Member Since:
20 August 2008
Posts: 16

Yes, go! you know having been a nurse that there are tricks to help manage such things. I just wanted to add, you may have seen we are producing a book of women's stories, its getting close to deadlines, but would you like to write you story? Photography included if you would like to include a portrait or family portrait in it? wendy@silverribbon.co.nz is the contact, but cc me in so i know and i can make sure she is around to get your email and if not, i can send you the guidelines.  You are very very brave, and the peace you speak of  that you have found, sounds like a great comfort tp everyone around you.  The cancer society i believe have some good material on 'what to tell the children' if you need it. Let me know if you need it and cant locate it - the things i read were from Wellington branch.

We are always here as promised.

Member Since:
30 December 2008
Posts: 1

Member Since:
24 November 2008
Posts: 8

Hi Erin. Painful (but good) to hear your story. My eldest daughter has already told me of the huge hole I'll leave... This time is amazing. Important things are being said that would never have been spoken. I'm feeling very loved. Have had a consult for the palliative doctor I used to work with who's an expert at fine tuning medications for symptom relief - I'm feeling much better most of the time which is allowing me to get on with things I want to do. I've spent most of the last 2 days feeling so good it's hard to believe there's anything wrong with me - I now have a partial bowel obstruction but the diet is really helping.  My beloved family are wanting to be with me constantly and we're having fun together as well as the hard bits. It's all just been too fast - It never entered my head that I wouldn't respond to chemo. I did expect a few months at the worst - but that was not to be. We're going to the beach after a pulse dose of steroids and we'll stay as long as we can. My darling husband has devoted every moment of the last few months to caring for me - we've been married for 42 years and never thought there'd be a time when one of wouldn't be here - is gradually coming to terms with things. It's a relief to be off the medical merry-go-round, I found that exhausting.

Rachel - I would love to write my story but don't feel I have time - I've so many things to write and do. I'll think about it and maybe make a start and see how it goes. It would be rough and you'd have to do some heavy subbing!

Thank you all. We are all okay - we're even managing to talk about my funeral. All the comments from this forum are really helpful.

Noelene 

Member Since:
5 October 2007
Posts: 35

Member Since:
12 November 2008
Posts: 2

Hi

Well I am also one of the unlucky ones who lost my wonderful Mum in October last year.  I have finally been brave enough to log on to this site and read all your postings which all sound so familiar.  We are certaintly not alone on this journey.

My Mum fought Ovarian Cancer for just under 4 years and a life changing journey it is.  She went through 4 cycles of chemo, mulitiple bowel obstructions, ileostomies and all things that go along with it. 

Mum fought so hard to stay with us all.  I was pregnant with my 2nd child when she was diagnosed but am so grateful she got to meet all 3 of my beautiful children.  I feel really angry somedays that she won't be around to watch them grow up  and always hoped she would be with me on my daughters first day of school next week, but that's just the way it is.

I think it's great Nolene that you and your family are talking about things openly.  My Mum really never came to terms with the end and therefore because she went down hill very rapidly we never maybe said everything we could have.  I think having letters for each of your children would be irreplaceable and a really brave thing to do.  I admire your strength and courage and send all my love to you and your family.

It's amazing hearing all your stories, different but yet the same. Take Care

Member Since:
29 May 2010
Posts: 1

Member Since:
20 August 2008
Posts: 16

Hi Jean, my personal recommendation is that you take a print out of the symptoms from this website, and take them to your doctor for discussion. Also, under the Medical Professionals resource section in the main menu, you will see an ovarian cancer symptom diary, perhaps print this and monitor your symptoms, but so still see your doctor. I am not sure where you got the information about bleeding and ovarian cancer, this is not one of the common symptoms identified by research. Take care of your own health, and get a second opinion if necessary. It may be nothing to be concerned about, but we want to know that for sure dont we! good luck! I will watch out for your reply... Rachel

Member Since:
18 May 2009
Posts: 1

Hi Jean

I echo Rachel's comments above really loudly.  Get to the Dr.  You have nothing to lose but eveything to gain.  My Mum is at the advanced stages now of ovarian cancer.  When she was first diagnosed she had absolutely no symptoms and was fit and healthy.  My Aunty (also at the advanced stage) had admoninal pain and bloating in the morning.  It just goes to show that everyone is so different and very rarely will you find two people with the exact same symptoms.   As Rachel said, hopefully there will be nothing to be concerned about but you need to be certain of this.  All the best, will be thinking of you.

Nic