An update

Just catching up on other people's good news and I thought I would blog an update.

After my 4th round of chemo my CA125 leveled out and it was still quite high and I'd expressed several concerns about this during chemo that compared to other women that my levels didn't seem to be falling fast enough.

I decided not to have my 6th cycle of carboplatin and my consultant agreed with my decision. I had a CT scan on the 17 November and saw the consultant the following week. Basically the cancer hasn't changed its stayed the same so my CT scan isn't clear. I've read my CT report and there is cancer in my lymph nodes which I wasn't aware of. The report also refers to my liver and nodules in my left breast. The consultant said because I have a low grade tumour I could stay this way for years but I will need to be monitored. I'm having another CT scan in January and seeing the Consultant again in February.

Since being told my CA125 has leveled out my mood has been spiraling downwards. I feel sad about so many things not being able to have children, going through the menopause, not feeling very sexy and womanly and feelings that no one will love me or employ me with cancer.

I'm having to deal with a limited capability assessment for work as well and I'm expecting to be called in for interview in the New year. Just hoping they don't reduce my benefits too much I just about cope but I'm feeling under a lot of pressure to look for work when I'm just not ready yet.

I've been referred to the psycho-oncology team for counselling so I can work all this out in my head and develop some coping strategies. I had a chat with the mental health nurse on Monday as well and she asked me if I was looking forward to this year to be over and I said to her but it will never be over......

14 Replies

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  • I'm so sorry to read of your predicament, and feelings. I'm not surprised your mood has been spiralling downwards; you are going through a relentless grieving process for all the things you feel you have lost.

    I'm so pleased though, that you've been referred to the psychology team; as you know, I'm a Counsellor, and I know both at first and second hand how important it is to talk these things through with a supportive, but uninvolved other person who has the skills to help you find your own way to see things more optomistically.

    Wishing you the ability to live in the moment, and enjoy the bits that are enjoyable- thus finding a way of starting new dreams and hopes for a different future than that you imagined before cancer.

    Much love,

    Isadora.

  • Thank you Isodora I actually asked to be referred to the counselling service but my GP wants me to set myself some goals for the New Year and I felt a bit frustrated

  • I agree with everything that Isadora has said, you just hang on in there till you can see the psychology team they will have your mood changed, and you will feel a lot better so that you can get on with your life.

    Please have a Good Christmas, and sending you lots of Good Wishes for 2012.

    Take Care.

    Luv trish x x

  • Thanks Trish. My mood has improved a little I'm not feeling quite so desperate as I did last week

  • Hi ScardyCat,

    I bet I am a bigger ScardyCat than you! I saw a very big positive in your post - you have a low grade tumour. Just think of all the treatments that might be around in years to come.

    I am going through a tough time too. First line treatment left me with rising CA125 which is doubling every 4 weeks. Just waiting for the results of my PET scan and what the cunning plan is. Unfortunately mine is a grade 3, so not good news. However, I still feel well and have great people around me - I hope you do too. I am 45 and this is not the position I want to be in. I am OK most the time, but most days I shed a tear, but try to make it not for too long.

    I am sure the physco-oncology team will help you feel better about yourself and the future. I have a lady who comes from Macmillan and helps with relaxation.

    Take care and know you are not alone in feeling very down sometimes.

    I hope you have sometime over Christmas where you can try and put this to the background, and as I have said before - let's face 2012 together.

    Love Lizzie

    X

  • Hi Lizzy,

    I'm Stage IV because I also have it in my chest. I wish they did more research into ovarian cancer they've already told me that mine is rare and they don't seem to know what to expect so that makes me anxious

  • Hi ScardyCat!

    You are not unique! We are all scared! I am 71 so I am luckier than most, 69 years before I was diagnosed. Still I am scared of what the new year will bring. I am only just starting to eat and getting used to my stoma and I have no guarantee it won't all be back again by easter!

    Still my lovely daughter is looking after me and I am determined to be here next Christmas.

  • I would love to give you a hug because you echo so much of how I am feeling!

    I am now booked in to have a full op My only chance of having children all gone and I too feel very alone and full of regret of misspent years! But I know I cant change whats happened to me or my past. I thought my first op would just take it all away and that the new year would be a new start. Misguided I guess or naive... Not quite the new year I had expected so hopefully the year after will be!

    I think everyone will have moments when they want to run in the opposite direction, and times when we say ' bring it on' and determine to fight!

    I am up and down more times than a yo-yo and I so want to be the type of person who just gets on with it and seems stronger and more able to cope than I do at times. But we are all different and learn to cope in different ways and in my heart I know they have had similar feelings at one time or another..

    I hope you continue to be more positive and I am sure the counselling will help.. have a good Christmas xxx

    Julie

  • Hi Julie

    I feel for you, but you sound as if you have one hell of a fighting spirit, so you will get through whatever is chucked at you. I too was unable to have children, but since having OC I have really appreciated what I have and tried not to dwell on what I don't have. I have a great husband, a lovely family, a wide circle of friends and I can take holidays and short breaks since my retirement, without the guilt of thinking about what I might leave behind for children...I know that sounds selfish, but I prefer to think it's self reliance, and it was not my choice for life to be like this. I firmly believe that we all have to concentrate on making the best of what we have and not dwelling too much on what we can't have. I love socialising, eating, drinking, and believe I'm blessed. Happy and Healthy New Year to you

    Love Wendy xx

  • Oh Ladies, if only we had a Magic Wand !!!

    This is a saying my husband wrote on a sheet of paper for me, its where I can see it when I have "One of those Days".

    DONT GO THERE TILL YOU GET THERE !!!

    Luv Trish x x

  • Sending you a big hug!

    It's all tough to get your head around...but like the doc says, with your low grade cancer, you could stay the same for years! So you can have plenty of good times. There are few enough jobs anyway, so don't fret about that - find something better to do with your time.

    Menopause has been a biggy for me, but with my big fake fur coat on and a bit of lippy, I can still conquer the world most days (or pretend to, and who's to know any different?).

    love Gael

    xxx

  • The government iis trying to make it harder for cancer patients to claim benefits

  • Hi Scardycat!

    When I think back to your first posts, you have come such a long way! You should be verrrrry proud of the way you've coped. You've sorted out the support and help you need and you have weathered the initial storms. I'm sure you will cope with whatever is ahead. I'm so glad you have counselling set up. It will help you to make sense of things a bit. The OH side of things is tricky, but if you contact Macmillan, they will be able to help you. I do a bit of work on a survivorship group with a few Macmillan workers and they have advisers who they employ specifically for return to work-related and occupational health issues. I think you can contact them via their website or the local branch. The website is good for Q&A bits too, as someone else, probably with a different type of cancer, will have gone through what you're thinking about right now.

    A Happy and Healthy New Year to you

    Love, Wendy xx

  • It may be of help to some of you --- I just found out that via the Target Ovarian Cancer site, they have a "Ask the Expert" link which gives advice as below

    The legal panellists help one reader work out how to deal with her insurers. And, also, their top tips on:

    when to tell your employer your diagnosis

    what sick pay you are entitled to

    thinking about legal matters and the future

    haven't tried it so have no feedback as to how effective it is, but may be worth a try

    Wendy xx

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