PPC

I am having weekly paclitaxel, also see my oncologist every three weeks and then get a letter saying what wr have discussed. Which I asked for. But on reading my last letter it said, progression on avastin to stop and commerce on palliative caelyex. If you look at my profile you will see I am now on paclitaxel. What is upsetting me is seeing the palliative word, was told there was no cure but it is treatable. Now I am thinking is this the end for me. I hope you lovely ladies can give me some advice. Xx

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  • Hi Juliette

    I too have PPC. I agree that the palliative word is scary but that is because we only look at worse case scenario when we see it. I was told to look at my disease as a chronic disease which may return but can mostly be treatable. For instance diabetes is chronic and yet you wouldn't look at somebody with that condition and think that's it for them.

    On Monday I had to go to hospital as I had developed an unbearable pain in my lower back. When the Dr saw me he immediately said this has nothing to do with your disease or treatment. It is a herniatic disc problem to be treated with physio and pain killers . Yesterday my CNS phoned me to discuss changing the pain killers as they were quite strong. She started by saying I will get the palliative nurses to talk to you. Immediately she told me not to think that my Cancer had got more serious. She was merely talking about best pain relief for my back condition and you will agree that is not life threatening. . It's just a word that governs many things. I do wish there was another one to be used for ours. I hope this helps

    XXX

  • Thank-you molly, I wish there was another word than palliative. I hope your back pain soon gets better and the painkillers help you. I have noticed when I walk up a slight slope or hill my back hurts, so then l start thinking is it to do with the c word. 😏I see my oncologist on the 9th of September, so will mention about that and also why he said he was sorry but the c word as got into the lining of my bowel and he was sorry but I can't have an operation. My hubby said that it's because it's in the lining.But will ask him these questions when I see him. Are you still having chemo? Love and hugs juliexxx

  • Hi Juliette

    I am almost afraid to say this but this morning when I got up I just had the usual dull pain I have had for a long time. I had a really good nights sleep for the first time in 3 nights and didn't even take a pain killer before I went. I even stayed out last night until midnight . Today I have only taken 2 Tramadol and fit to face the world. My CNS rang me to confirm I can delay my second chemo for 1 week so I can enjoy my nephews wedding Fri week. I went back on chemo on 15aug as I have recurrence in my lymph nodes.

    I know what you mean by hills as I do find them difficult . I carry a fold up walking stick for the hills. Possibly my extra weight which i have acquired since i got this doesn't help..a Ct scan I had 2 years ago showed arthritic changes in my vertebrae. Not sure if it was caused by chemo or age but I attribute the dull pain to the arthritic changed.

    Yes, it would be nice to have a different name because to most people it only has one meaning. You must just try to remember that there are so many women surviving and there is no reason you can't be one of those . Take care and write down those questions. It's amazing what you can forget. Good night. Keep in touch

    XXX

  • Thank-you molly, hope you don't mind but I read your reply to my hubby and he said you gave me good advice. So I will write down the things I need to ask about. So glad your back pain was not as bad this morning. Yes I will keep in touch. Goodnight and have a good 😴sleep. Xxx

  • Hi Juliette

    Of course I don't mind you showing it to your husband. You are both in this together and he needs the information for you and also for his own reassurance . Lots of women's husbands even talk on this forum to help their wives .

    Take care and good night

    XXX

  • Juliette

    Just to say a blank message came from you now. Maybe you hit the submit button by mistake. It just says on top " no content in this message " . It might be a system error. Take care Juliette. I hope I didn't miss one of your nice posts.

    XXX

  • Hi molly I hope you get this message, I probably pressed a wrong button the last time. Think it was about you having a good sleep again and glad your back was feeling a lot better. I have been up a few hours now. Will read my book that usually relaxes me. Hope you had another good night and no back ache. Have a lovely weekend and will keep in touch. Love and hugs juliexx x

  • Wise words Molls xx

  • Hi Debs. What a difference a day makes. Gone is the demented lady of yesterday suffering from a painful back, lack of sleep

  • Obviously not enough sleep as otherwise I wouldn't have pressed the wrong button. I really felt refreshed this morning having gone into a deep sleep. Plus I did not need strong pain killers and even our cat is getting better ! Hope all is well with you

    XXX

  • Glad your back has got better and that your cat is also on the mend so have a nice break from the chemo and enjoy your wedding. You were never demented only you were in pain.

  • Suzuki

    I finally get to answer you. My broadband service is pretty inferior as we live in the idyllic countryside with no mast near us . As I said I am almost afraid to say that my back is now back to just normal twinges I have been living with. Hope all is well with you too. Thanks for your post

    XXX

  • My understanding of the word pallative is to be meaning that your condition is incurable so that any treatment is aimed at slowing down progression and increasing what clinicians refer to as 'progression free periods'. Its when you run out of treatments options or you decide not to have any more treatments that is when the 'pallative care' that we all fear comes into play or that is my understanding based on 5 yrs of living with this disease.

  • Thank-you scardycat, you have given me Hope, also saying you have lived with this disease for five years and many more. Love and hugs juliexx

  • Hi Juliette,

    It is a shock when you hear that word applied to you. I remember feeling the same when one of our District Nurses asked me who my 'palliative team' were. I froze.

    Molls and Scardycat are quite right. Don't be alarmed.

    Take care

    Debs xx

  • Thank-you Debs, yes when I saw the palliative word it did alarm me, but your post as Put my my mind at restxxx

  • For what it's worth I suspect the medical profession use this word in all sorts of ways..but we do the jumping to conclusions. I remember reading on a letter to my GP that my chemo was palliative (this was the same letter that stated I was stage 4...no one told me!).

    But just recently my Onc said that now I am NED with a low ca125 that 'hopefully the condition won't recur'.

    So the previous 'palliative' word wasn't about me I think.... It referred to the purpose of the chemo..which was to reduce the size and scope of the cancer so that a curative op could take place.

    Hope that helps... But I do wish they would find another word! L xx

  • Hi Lyndy,

    What does NED stand for please?

    Diane

  • Hi Diane

    I'm jumping in here in case Lyndy doesn't get s chance to reply today. It means No Evidence of Disease and they are the letters we all want to see at the end of treatment and at each checkup appt we have after that. Take care

    XXX

  • Hi Juliette - choice of words really affects how we view our disease and the p one doesn't have good connotations. Like you I have been told inoperable but it is treatable by medication and (I think) lifestyle and attitude. I think you actually have to be a bit in denial about prognosis to be motivated to go forward. I was motivated by Kelly turner's book Radical Remission and the course run by the charity Penny Brohn UK (see their website) to help me live my new life to the full. That life is currently not restricted although I am on 'maintenance' Avastin. Keep strong and just do normal things to help you forget the C word.

  • I was told by someone (cant remember who) that first line treatment is termed as curative, second and subsequent lines are referred to as palliative. I just dont use that term yet, like you I tend to think of it more as end of life and I'm not ready for that yet! Ann x

  • My onc and CNS haven't used that term but they have said that treat my condition as chronic, I must admit I'm glad they don't as I would feel the same as you. Different medical teams using different and maybe kinder phrases??

    Take care xx

  • Thankyou, yes they also said the same to me. Xx

  • Most docs use 'palliative' to mean it can't be cured but can be treated so as others have said it becomes a chronic disease. I'm not adding anything new here but sometimes it's useful to hear from more people.

  • I got delayed at rt a few years back and told go for a cuppa and take my file with me, So I opened it and read the letter my onc had sent I saw that P word and couldnt speak to my husband, I thought I had weeks reading I was being sent for P rt. I didnt have my tea and bun I wont even mention the word. My illness is chronic and not curable but doing okay besides that awful word. No need for it!! I was a dental nurse in a former life and any one who wriggled was deemed unco operative so I felt that was very unfair because when you go to the dentist you are scared. So terminology does upset us

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