Girls, can you help me to feel more positive about living with ovarian cancer?

Dec 1999. I was diagnosed at age 29 with stage 3c OC. I had hysterectomy then 6 cycles taxol/carbo.

April 2005 - 1st Recurrence. Tumor removed around bowel and colostomy made. 6 more cycles taxol/carbo.

August 2009 - 2nd Recurrence. 3 small areas of disease with the abdominal cavity, so told no chance of cure now. 6 cycles caelyx resulted in stable disease.

Dec 2011. Permanent Uretic stent inserted as tumors pressing on ureter and causing kidney to swell up.

Present Day: We are now playing the waiting game to start the inevitable 4th round of chemo as i am presently asymptomatic.

************

Okay, so that is the brief medical history. I was always very positive that I was going to beat this cancer and if not, i was blooming well going to enjoy what time i had left. I am finding this increasingly difficult to do, especially since the end of treatment for the 2nd recurrence and feel I am just waiting around for something to happen, (ie death). Friends and family are all saying 'you can live with cancer for years', or telling me that they know loads of people who have survived cancer, but I need to know about people who are in the same boat as me.

Ultimately, I think I need to have some idea of 'how long do i have left?', which i know is like asking how long is a piece of string, but I think knowing what others are experiencing in terms of longevity would help me right now.

Vicky (41)

17 Replies

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  • Didnt want to read and not reply and I really dont know what to say to comfort you as I am currently waiting for my debulking op thats happening on monday just wanted to offer my support and send a virtual hug x

    Kate x

  • Hi Vicky,

    You obviously respond well to treatment, and there are a lot of different chemos around, so I am sure you have hardly scratched the surface of those which can keep the monster at bay. Keep on trucking.

    Love Lizzie

    X

  • It's difficult. In your position, I think I would be getting 2nd, 3rd, even a 4th opinion. Your cancer might not be curable, but it is treatable. You've responded to carbo/taxol twice, and you might have a good response again.

    I often visit the Inspire site - women there have had more or less constant treatment for up to and beyond five years. Often these women have a very good quality of life. In that sort of time scale, you haven't even started treatment yet.

    Also, you have age and relative good health on your side.

    The American surgeon Bernie Seagal, who produced some wonderful healing CDs, pointed out that if a patient truly trusts his/her doctor, then if that doctor gives the patient a set amount of time left to live, sometimes the patient will die right on schedule.

    Nobody can foretell the future. Most oncologists don't like making these prognoses because they are often wrong. Perhaps you could think instead of time in chunks of a few months. That's something I've done since diagnosis.

    Also, counselling might help. You can arrange that thru' your GP, hospital, or Macmillan.

    Take care, Cx

  • Vicky,

    I am so sorry to hear you are so 'down' with your present condition, but be assured with the right treatment you can keep going.

    I am into my 6th year of fighting late stage o/c. I ill have been constantly on chemo for 4 years this coming May/. My cancer is classed as a chronic condition and I am on maintenance chemo. Yes I get fed up with the two or three weekly visits to hospital and I long to be in remission. But I am alive and that I am thankful for.

    Think positive and I hope you have a good relationship with your Onc, that helps and get counselling too if you need it. I have weekly Reiki to help me and I just try and be positive.

    I have been through lots of treatments to get me where I am today and I start a new regime tomorrow. I am still being told there is plenty out there for me. My motto is 'whilst I have cancer, cancer does not have me'

    Love Anna xx

  • Hi Vicky

    Like Kate, I wanted to respond. Check out some of the earlier "conversations" there is a lot of stuff on here that you might find interesting. Just type in keywords at the top of the page. Have a look at a thread called BBFC if you want a smile, and keep on thinking about what there might be out there in the pipeline in terms of treatment. The idea about counselling is a good one too and reiki is marvellous .... very gentle and effective for some of us. If you're feeling down come on here and have a rant. There's usually someone who can sympathise, even if we haven't had your experiences.

    Good luck and a big hug

    Love Wendy xx

  • Hi Vicky,

    What a difficult place to find yourself in. The key phrase in what you write for me is 'so told no chance of cure now'. Actually; no one can be certain of the future - future treatments, even unexplained changes. We are so easily robbed of hope by the kindest of intentions to be 'realistic'.

    Have you explored the complementary field? There is a great deal that adds to the efficacy and effectiveness of treatment. I wonder if it's something you might do to re-ignite your feelings of being in control to some extent. which is what we lose when we stop feeling we can beat it.

    You've had a bloody horrible time - but I (and all the other posts here) hope you can find the way to get on top again and stay there.

    Very best wishes,

    Isadora.

  • I can second the reiki, I had a treatment last week and am having another tomorrow. I found it so relaxing and gave me a huge sense of calm-Id definitely recommend it-it made me feel like I had some control back, in the spiritual sense. Also, keep coming on this site, there are times that I cant as I cant face the stories that arent so positive but we all have to remember we arent statistics, we are all individuals and our cancers are individual to us and we truly do not know what is around the corner, the medics are constantly releasing trials and also using drugs that are available now for other illnesses so keep the hope and faith. Much love xx

    Kate

  • Hi Vicky

    I too was diagnosed in 1999. Had Cisplatin and Taxol, clear for 2 years then recurrence and had Carboplatin. Since then have had 7 more courses of Carboplatin but last year developed resistance so had to have Topotecan as Caelyx not available. That drug held the recurrence but did not decrease size so after 3 cycles started Gemcitebine of which I have had 2 cycles and await CT scan to check response. So I am now on my 11th line treatment and keep pressing on enjoying the good days but tolerating the weary days!!!!! I do not have my CA125 done as my Oncologist says he does not see the point when they would not treat me on a rising count and it sometimes just raises the anxiety levels I struggled with that at first but now just acccept it and I must say he is very good because if I say I think I am 'running into trouble' he listens and organises scans etc.He assures me that I am not coming to the end of the drugs available although he is certain I do not qualify for Avastin. I know how wearisome the ongoing chemo and constant awareness of the cancer is but there are many of us cancer survivors around and from personal experience over these past 12 years I know my faith has sustained me through many traumas including the death of my dear husband.I do hope you will be able to rise above this downtime and be hopeful for the future.

  • Hi

    Thanks to all of you for your messages; you have all made different comments which brought together have made me start to feel a lot more positive.

    It is very comforting to know that there are people out there in the same boat as me and knowing how long you have been having treatments for etc is a great help. When friends were telling me about "people who live with cancer for years", these "people" were faceless urban myths, rather than living, breathing, blogging people. I doff my hat to all of you.

    I wasn't looking for a promise or guarantee on the time I had left, just a realistic estimation of the sort of timescales that are involved for a person in my situation. Being non-committal on this subject just made me even more insecure. I felt I could not make any decisions about my future; what was the point if I never saw them come to fruition? So, chrystynh's comment about seeing life in smaller chunks is a brilliant idea.

    So..... I enrolled myself on an accountancy course. I have been studying to be an accountant on and off since 2006, but I was finding it difficult to become motivated to complete it and wondered if it was wise to commit to a course followed by an exam in June, let alone finish the other 6 exams. Well, it does not look like I am going to start on the chemo immediately, so I thought BBFC, I'm doing the course. I will take one exam at a time and maybe I never will finish the qualification, but I will get as far with it as i can.

    On the subject of counselling, I was seeing a counsellor last summer, before my condition had deteriorated to the point of actually needing some treatment, but I am not sure if I would feel the need to go back to her just yet. The trouble is, she was not medically trained and did not know any thing about my specific medical history, so I felt that hers was just another voice telling me I should not worry about it because it could be years before I needed any treatment.

    I am also going to think about reiki or something similar.

    Thanks again for all your comments. Despite your own troubles you have taken the time to be inspiring to me.

    Take Care

    Vx

  • To VickyEm and all the ladies on this page,

    I have just been diagnosed with my first reoccurance. I am having a 2nd & 3rd opinion but because of my recent op cannot start the gem/carbo for another 2 weeks. Every time I feel a bit strange I visualise this THING growing inside me.. I take great courage by the positive comments and thank all you brave girls out there who are getting on with life. I really do not feel ready to leave yet!!! I wish I hadn't asked my oncologist how long I had! I am not going to listen to that! It just isn't right! As you can tell - today I am sh.....ing myself. I try to be strong for my hubby, family and dear friends, as I feel resposible for the cloud Ihave put over them? Not a good day in my head today. Sorry...

  • Hi FannyAnny

    It is interesting that you have found this old post of mine. I was feeling desperately sad about my future at this time. I was so miserable and could not see any point in carrying on, thought I might just as well be dead right now and be done with it.

    However, it was only 4 months ago and I feel so much better now. I have a new attitude and being part of this site has been such a help. Of course we all feel down about our prognosis and I think that feeling sad/scared/angry etc is part of the process and that we have to 'go low' in order to bounce back up and feel happy again.

    These must be very dark days for you at the moment, but I think that once your treatment starts, you will be able to feel a bit more positive. I always find having chemo a very positive experience as I feel I am having the best possible treatment for my condition and I can't ask for much more than that. Some people use visualisation techniques during their treatment, where they meditate and imagine the cancer cells being destroyed by the chemo.

    Have you read the BBFC blog? Look for it in the search box. It has a good old rant at cancer and sticks two fingers up at it.

    I do hope you are feeling better soon and in the mean time please accept these virtual hugs @@@@@@@@@@@

    Vx

  • Hey Vicky, You really must have been in my place - everything youhave said and felt is what I have thought - even to imagining my loved ones at my funeral!! God!!!

    Listen - I take courage from your words - all around me are such a support but you ladies on this website are what is keeping me together at the moment - and my hubby seems to get on the internet before me and tells me I must reply to certain replies!!! Bless him! Thank you and if you were nearer I would hug you!x

  • I just wanted to drop a line to say I know exactly how you feel when you said you feel you are waiting around I've been like that for months.

    A friend of mine gave her cancer a name and I've decided to do the same with mine - Olivia Crawford.

    However some nice things have happened to me recently. I was single but I've started seeing someone and he makes me smile and I've also had some money back from a pension scheme.

    Make the most of the good times xx

  • Hi VickyEm, So glad that you are feeling more positive now. I was also diagnosed stage 3C in 2007 and had a recurrence in 2010. A book that I read recently is called 'The Secret' by Rhonda Byrne and it tells you that you can have whatever you want, including good health - you just have to ask for it and believe that your needs will be met. Have a wonderful day and well done for progressing with your accountancy course. P.S. What does BBFC mean? :-) Somehow I don't think it means British Board of Film Classification? LOL

  • Excuse my (quoted) French but see the discussion:-

    ovacome.healthunlocked.com/...

    <<Naughty fourth form giggles>>

    Love Lizzie

    X

  • LOL - knew it was nothing to do with movies! LOL :-)

  • BBFC indeed!

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