Here we go again

Started third line yesterday carbon caeylx. Found it bit more difficult to be positive when results came back it had returned but now started treatment feeling more upbeat have to keep strong. Have had amazing time in remission and planning more for next one. I know I'm strong and look well but sometimes I could punch the well meaners when they point this out, not normally a violent person but hAve found this disease has made me very intolerant of certain things. Is it just me?

12 Replies

  • Hi Jill, I know where you are coming from, just like I loathe the saying stay positive. What do people think I've been doing for four years, thinking negative!!!! I smile, I say I'm fine even when I'm feeling crap and I'm doing everything I can to raise awareness and get on with my life but like you I've found myself intolerant at times, which isn't me at all. Perhaps it's our name lol, big hugs Gill xxx

  • It drives me mad too when people say "..but you look so well". Never any sympathy!

    Do see my previous posts about Vit E and B6 whilst I was on carbo/Caelyx. I'm sure it was taking those that spared me having mouth ulcers, painful hands or feet.

    Good luck


  • It's not just you, I also have to bite my tongue when told how well I look, or how glad I must be now my hair is back, if only that was the least of my worries , lol ! Trudy xx

  • Good luck with your new treatment Jill. I shall be starting a third line of Caelyx/Carbo shortly after you. It's good to have a period of adjustment to going back on treatment after a period of remission. Let's all compare notes. Veronique had a good suggestion about Vitamins. It would be so good to keep these in one place to refer to and to give one another support and encouragement along the way - as well as chance in private to be bloody intolerant of yet another person who tells you to be positive or tells you that you look well.

    Here's to the bolshies!!!! xx Annie

  • Oh No Jill, it's not just you at all. I am also intolerant, especially of people that want to moan and grown about "their lives". I was diagnosed July 2012 and like Annie am just about to start 3rd line, Caelyx and carbo.

    The first lot of taxol / carb floored me, the second lot gemcitabine and carbo wasn't too bad. I've been on wait and see for the last year and the buggers have now grown, but I am feeling well. Like you people say how well I look. Yes I look well and I am going to do everything possible to stay that way.

    Good luck for a long long remission, love Irene xxxx

  • No its not you. I went out last night to say goodbye to a friend who was having a bit of a farewell party. I went along even though I was tired and in pain (starting 2nd line Caelxy on Wed) and everyone kept saying how fantastic I looked. Not only did I feel like I was removed from the whole situation, but I kept wondering if I could see other things in their eyes (pity perhaps)

    Good luck with your 3rd line.


  • Hi Jill, know exactly why you mean. I get so fed up when people tell me I look well, especially on a day when I feel awful, that my response has become, "yes, make-up is wonderful".

    Good luck for your treatment. From reading the recent posts, there seems to be quit a few starting/have already started this combination.

    Great advice from Veronique re the Vit E a nd Vit B6. I suffered terribly from mouth ulcers first time round so will bear this in mind for the future.

    Good luck with your treatment. Ann xo

  • Hi Gill I comleted 6th line carbo/calyx yesterday, I wish I had known about the vits B&E I developed a very bad rash hands feet and chest, very painful . Itstarted after round 3 and became very bad after 4th, it was painful and itchy at night so I kept my whole body moisturised by using E45 bath emolient, then savlon cream dto ease and stop any infection, then at night I used an emolient my daughter uses for her 2yr olds' acne it certainly helped releive the itching at night. My feet were permanantly ontop of bed as they get very hot. I was very poorly at that point totally washed out worst for me than the 2 previos round///////////////////////////////ds of chemo. They gave me an extra week to recover and also reduced 5th & 6th cycle by 20%, so definite improvement in recovery.I too get az bit fed up with peoples remarks but I just think they feel they have to say something. Looks like a few of you about to embark on this regime good luck and if I can be of any help well yo know where you can find me. My husband and I had agood laugh Iread him the posts, thanks for that laugher is the best medicine. Lots of love and hugs to you all .Bridie xxx

  • I get fed up with people telling me how well I look too. I also get fed up with someone telling me how brave I am going through all this cancer treatment! I feel it's not bravery, it's necessity. It makes me feel wound up just typing this.


  • I get fed up with people asking me how I am and when I start to tell them they butt in with

    how they have had a bad cold and have been soooo ill....I just say oh dear poor you and move on..xx

  • CANCER is a taboo as it has many negative associations and people associate cancer with pain, inability to eat and death. It's not surprising they don't know what to say as they are often scared, and to see us all looking well in spite of our diagnoses is a marker of our spirit, our determination and our abilility to keep going when all we feel like doing is telling the world to p off and crawling under the nearest duvet. I feel like an ambassador for cancer, that I have this to help others see how you can live with it and that's all I can do, I try not to get angry and remember that everything is relative to each person as they live their lives and when they talk about their sore throat or bad toe I just smile and wonder how they would cope with chemo, answer perhaps they wouldn't and that's why I'm on my third lot and they are worrying about a broken nail 😊 xxxxx

  • Thank you ladies for all your support. First week is almost over, always the worst for me although can't explain how I feel. Not really in pain or tired or sick, just down in dumps and cross because can't shake it off. Hopefully will feel better in day or so. You really are amazing ladies, keep up the good work and give yourselves all one enormous hug from me.

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