Feelings

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8 months ago I posted on here how low I was feeling and I suppose wallowing in self pity, work that I loved finished me on ill health just before Christmas last year, I knew this was inevitable but still came as a shock, I felt worthless and lost, I have stage 3 high grade serrous ovarian cancer, been through the mill as haven't we all in one way and another! Currently on Niraparib and have been since September 2022, I've faired quite well on it, although in the beginning of taking it had a dreadful headache for a month and anaemia, I have regular reviews with the oncology team and apparently I'm still cancer free, last ct scan in July confirmed this and that i have a small hernia just above my belly button, I'm dreading the Niraparb stopping in a years time, still sometimes consumed with the thoughts of dying from this ( lost my brother to prostrate cancer March 2021) he was just 61, I found myself a hobby I love, I get out more, I have an allotment which to me is therapy, after an horrendous 2022 from pulmonary embolism to diagnosis ascites drains and surgery, I'm more positive, ca125 is stable at 9.6 and I feel as if I'm getting a 2nd chance at life.

I know everyone's journey is different and outcomes not always good we all have our demons too, I just wanted to send you all something positive, I'm wishing everyone a good outcome we’ve all had a long mind and body destroying journey...

Love ️ from Rose

Xx

  • Just wanted to put an update on here, I'm still positive in myself, I've been through the mill again as in March 2024 my cancer returned as Niraparib stopped working, oc came back in my large bowel causing a blockage, so I now have had more major surgery I have a stoma and undergoing carboplatin and caelyx chemotherapy, this week I'm due to have my fourth on Thursday so halfway there, staying positive, I'm just glad I'm still here, wishing you all good outcomes x
  • Hi rose

    your journey sounds very similar to mine, acities moved from abdomen to lung cavities also had p.e

    unfortunately naraparib made me I’ll and had to stop taking it

    im now fighting recurrence got 1 round of chemo left to have on tues although it hasn’t worked, tumours are slightly bigger now, not sure what my choices will be after chemo has finished

    glad you’re moving on with your life even if it’s slow, I had to leave my job too last nov I was a pub landlady I wasn’t fit to do it physically emotionally or mentally  now live near my mum and step dad to try and help them through their struggles mum has instead dementia and he has lung cancer newly diagnosed.

    enjoy the things you love doing

    take care Pam xx

  • Hello Rose - I know you posted this a while ago but have just read your post now.   I hope you are doing ok and I am so sorry for the journey you have been on.   It is lovely to read you are feeling more positive and as you say getting another chance at life.  Although my journey is different to yours (I am fairly newly diagnosed - Feb this year - full hysterectomy and chemo just finished), I can certainly identify with some of what you have experienced.    You mentioned you had been wallowing in self pity and to be honest I did too.    I am not sure but actually I think we are allowed to do that for a period of time?    When you think about what we are going through on our own journey's  - it isn't for the faint hearted!   Its only natural to fear the future when you have a diagnosis of OC - bit like you, I try to keep focussed on the present and what I have right now.   I accept that my brain will drift into 'what if' territory but I try to put a stop to it by giving myself a different outcome - if I allow myself a negative outcome. I have to think of a positive one and think of that also.  Doesn't always work mind!   Your allotment sounds lovely as well - a wonderful healing activity for your mental wellbeing.    Hugs x

  • Thank you pickles, it's an horrendous thing to have to go through, wishing you all the best outcomes possible

    Xx

  • Hi  

    I just wanted to say how much I resonated with your post, and I agree that we are allowed to indulge in some self pity as we’re only human. Go there but don’t stay there is what I try to remember. I didn’t have OC but had my ovaries removed as part of larger surgery (my story is in my bio) so I sometimes look in this group-in fact I look all the groups for which I have lost a body part through cancer! Joy

    Your idea of looking for a positive outcome if you allow a negative is a good philosophy. I call it looking for the silver lining. I was having a bit of a pity party for myself as I had my gallbladder removed 3 weeks ago, and then unexpectedly developed a nasty breast abscess resulting in numerous hospital visits and unpleasantness.

    However, today when I was at the breast clinic and was told I would have a 3 hour wait for further tests and to see a doctor, amazingly the dr turned up early, was able to fit me in to check me over, said I didn’t need the further tests and if all is well my final appointment should be next week. I went in thinking I wonder what they’ll find today? What if it’s serious? I hadn’t remembered to think “what if all is fine?”

    It turns out all was fine, but I’m so used to that not being the case I forgot to allow myself to think it. Your post has been a good reminder to me today, so I thank you for that. 

    I’d like to take the time to wish you all the best and hope your treatment has been very successful.

    Sarah xx


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  • Hi Sarah

    Thank you for the reminder about being able to go there in respect of self pity but not stay there -  and the not staying there is a good reminder for me.   That is what is great about this forum - we are there for each other and share these ways of coping.   Its so hard to think of a positive outcome when we've been through the trauma of the not so good news...... its hard to get over that.   I am so glad that all was fine on your last visit - wonderful news.  Long may that trend continue Sarah......  Warm hugs are sent your way xx