Having a wobble

I'm supposed to be having an early night as off to The Royal Marsden at 5.00am for cycle 3 Caelyx/carboplatin. I will also getting me CT scan result and am really scared it's going to be bad news! I have waves of abdominal pain and discomfort around bladder and think maybe the chemo is not shrinking the cancer cells which I know are there. I am scared I will have to come off the trial and stop the treatment. And I am wondering what will be next for me. I know I'm not going to sleep well as I am on steroids to counteract allergic reaction to caelyx. There we are, sorry for rambling on. Hope everyone is coping well tonight with whatever is being thrown at them by this horrible condition. xxx

18 Replies

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  • Oh Janine......wish I could give you a hug. I know what turmoil you are going through, we have all felt that way at some point during our journey. I know when I get myself in a panic I have all sorts of pains which miraculously go when the dreaded appointment is over. I have everything crossed for you that tomorrow will bring you good news. Please try to sleep. xx

  • Hi Janine sending you a big hug and hoping all will be ok for you. I think the chemo gives us aches because it is working so think on that one and hope you have a good nights rest. Best of luck

  • Hi Janine, It' quite alright to ramble on if it can help in any way I've had my this week,I'm in Australia so at the moment it's 7.30 am Wednesday morning, I had a night of watching bad movies and playing solitaire,so I know how you feel, it's so hard when at night you are on your own with your thoughts, but in the light of the day it seems a little better.

    I had Caelyx 6 round and also had pain at times, around the 6th round my 125 went up but 4th and 5th started going down, went down more even after I stop the Caelyx so give it time to kick the beast in the butt. with all my heart hoping the day goes well....Lorraine xxx

  • Can't help being sympathetic as I get up early to go to the Marsden periodically.....pain is so Mvariable it seems to me but do hope it's the chemo and you will feel better soon and trial will continue. Have just finished Caelyx. /carbo myself...what next I wonder?!!!!! Thinking of you...Chris

  • Thank you for your replies. I did sleep for a bit but am now wide awake! I appreciate your wise and kind comments and will try to think positive xx

  • Hi Janine - I'm sorry you've had a difficult night. I really hope things go well for you today x

  • Thank you x

  • Janine,

    You'll be on your way now and after such a awful night for you I hope that actually travelling will make you feel 'better'. This is a hard journey at times isn't it? Our thoughts can get out of control too - almost as if they're not ours!

    There are a lot of us who are having a harder time of it at the moment and that can be hard to read about and as a result the BIG "WHAT IF" question can't help but creep into our thoughts.

    There is sometimes no rhyme nor reason to ovarian cancer but we try very hard to " work it out" and guess what our results may be!

    I have been on steroids every day since my recurrence was confirmed on 25th Jan but luckily they don't keep me awake , I hope you did manage to drop off and get some sleep.

    Thinking of you, we are here with you and for you whatever your news.

    Clare xx

  • Thank you, Clare. We got here in good time and are now in the cafe waiting for my appointment to have my port accessed and bloods taken etc. I am aware that many on here are far worse off than me at the moment so I shouldn't really moan but as you say it's fear of the future - knowing that the worst is yet to come. I always look out for your posts, Clare. Despite having a really rotten time yourself you provide such wise words a comfort for others. I hope your day today is the best it can be.

    Janine xxx

  • Clare, hope things have started to get better for you. Have been thinking about you often and hold you in my prayers. 🌺🌸🌼

    Anne

  • You're not moaning. Well you are but not in a negative sense. We all need to vent our feelings sometimes and I find the day before, and hours before, the next treatment are so hard. Same for appointments with oncologists and waiting for scan results. It's good that women here have gone through the same feelings. It helps me remind myself that I'll feel better at some unpredictable time. I wouldn't find this site half so supportive if everyone was constantly upbeat and positive and I veer between that and the doldrums from day to day. I hope your treatment is part way through by now and that you are feeling more cheerful. It sounds as though after this you are halfway through? Thinking of you today and I hope it goes well 😉

  • I agree. I've had a relatively easy time of things so far - a few technical problems delivering treatment and chemo side effects are tough for a few days but I'm told that everything is heading in the right direction yet I still feel sorry for myself and quite a lot at the moment as treatment gets tougher. I get quite cross with myself as I know lots of you are having a much tougher time.

    In hospital after surgery they would ask me to score my pain out of 10 and I started giving them my own "feeling sorry for myself" score as I had some low days. It seemed a silly thing at the start but I've kept tracking it since then and I find it really helpful - when I have a high score I think about what I can do to improve things or just try and be kinder to myself and when I realise my score is low I'm more able to appreciate the moment. It may sound weird but I'm finding it helpful😀

  • I hope all goes well today. I never sleep the night before appointments or treatment. Even when you know what to expect it's hard. If you are like me, you'll be bouncing off the walls with the steroids today. I got more done post chemo days than any other time lol.

    Best wishes

    LA xx

  • Janine- it is 4:30am here and feeling the same anxiety today. Have Oncologist appointment today after labs to see if I can resume chemo. I've been pulled last several weeks due to blood problems. I also have those feelings in my abdomen. The waiting while on steroids is awful. Hopefully we'll both get good news today.

    Anne 🌺🌸🌼

  • When I get anxiety that is overwhelming I take a Xanax. I seldom have to take one but keeping them on hand helps. They also help make me sleepy for those sleepless nights before something stressful. They can become habit forming so I only take them when necessary.

  • Thank you, I've not heard of this. I'll look into it...

  • Hi Janine, You would have had your your visit to Royal Marsden by now, after I sent my last reply I hope all went well and a good result from scan, since I replied my oncologist is recommending Caelyx/Cardopltin starting next week , so I'm interested in how you feel about this combo. I hope it proves to be just the thing to kick the beast in the butt for us both. Look after yourself best wish Lorraine xx

  • Thank you for asking, Lorraine. My results were a mixed bag. Haemoglobin low (stage 2 anaemia) neutrophils good (I'd been taking filgrastin injections day 19 to 23). Initially the Dr said my CT scan showed improvement but when I expressed relief and surprise she asked about my symptoms (abdominal pain when passing water and when bowels moving). She went away to get someone more experienced to look at my scan and came back to say the results are stable (not improved). If symtoms continue or worsen they will schedule an MRI scan. It was an MRI scan that detected my recurrence, it didn't show on CT.

    Anyway my treatment went ahead. So I have now had 3 out of 6 Caelyx/Carboplatin. I have felt quite washed out since and my skin is very dry. I believe the cumulative effect of this combo makes it harder to tolerate as time goes on and certainly the side effects of my first 2 cycles were different.

    I do hope you get on OK with your treatment and I am very happy to compare experiences and side effects.

    Good luck

    Janine xxx

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