Imformation

Hi friends I'm afraid I'm going to have a rant.as iv said before my chemo didn't work and has stopped.expecting to start docetaxol at the end of the month.anyway this past week iv felt pretty awful.iv been dizzy nauseous and when iv been out the sweat has been pouring off me,my hair has been really wet.yesterday when I was out I had to phone my son to come and get me I really felt I wasn't going to stay upright.i was starting to feel a bit worried about all this so I phoned my gp.she said the symptoms were down to my medication I was anaemic and the menopause.the last 2 blood transfusions iv had were given because I asked for them i think that is a disgrace.well it's the menopause that has really made me angry.due to medication I was taking I haven't had a period for 15 years and with all this cancer I didn't think you still got the menopause.i think it would have been nice to be told you could still get the menopause.maybe I'm just thick.i was weighed every week when I was having the chemo and my weight kept going up and it wasn't from eating as my appetite is not good.i said why is my weight going up and I got no answer.im just really bloody furious I thought iwas dying and that's why iv felt so bad.i was diagnosed a year ago and trying to get information is like getting blood from a stone.i think with cancer you should be told what's going on what might happen.i don't think I should have had to ask for the blood transfusions.they are the the ones with the blood results not me.i really don't like looking things up but I feel iv had to and I think that's a disgrace.regards Carolyn x

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  • It's good to rant and here is the best place :) I have found that asking lots of questions (which I have written down and prepared) helps me a lot. If you had a Hysterectomy before you started Chemo you would have had surgical induced Menopause. If you didn't the chemo would normally start medically induced Menopause. I am four years through this now and I still get sweats/hot flushes etc.

    I think you need to talk to your Onc team. They should be working with you regarding your treatments and your reaction to them. Talk to your GP about your menopause symptoms and your general health (your tiredness etc). Rally them and don't let up until you are happy you are getting the proper attention and treatment that you deserve. All too often we tend to defer to the medical profession and I don't think personally that we should. They are working for you.

    Hope that helps. Hugs.

    xxx

    Trish

  • I agree with Trish, some of the medics think we should be fed information by drip or on a need to know basis, They should realise, its our wombs have been affected not our brains. We can still understand things and worry about them. Remember, your gp and your consultant has a duty of care to you and perhaps maybe it may not be a bad idea to remind them of that. I am lucky in that my gp does look after me. My onc couldnt be better in fairness and I dont see the gynae onc now which really doesnt bother me. Over the weekend write down any questions that come to mind and get an appoiintment as soon as you can to discuss these questions and fears and symptoms. Do you have access to a gynae liason nurse or the onocology nurse, if not why not, ring the hospital and get their contact numbers. You are entitled to rant, because it is very annoying when those who have degrees wont mind us.

  • Thank you both for your advice and ideas.im seeing my Macmillan nurse on Tuesday so I guess she's going to be the one to hear what's on my mind.out of all the people who are meant to be looking after me she is the only one that listens and give good advice.im also looking at getting a second opinion.if I do they can't be worse than the onc I have now.regards Carolyn x

  • Hi Carolyn

    I totally identify with you and have been trying to work up the energy and time to put my thoughts and fears into words as you have done so excellently. I know exactly what you mean when you say that with cancer you should be told what is happening and what is likely to happen . Suzuki hit the nail on the head when she said the medical profession seem to forget that it is our female bits that are affected and not our brains. People with cancer should be treated with gentle care and understanding and should be given all the information they need to understand their particular illness . That certainly has not happened for me and not for you as I understand from your post. I am supposed to be going to a survivors seminar in Dublin next weekend and nobody has explained to me why I should call myself a survivor. I will try to ask some questions and get some answers . In the meantime I have many worries and questions that I hope the lovely women on the forum might be able to answer. I will compose my post over the next few days

    in the meantime Carolyn you will be in my thoughts and prayers. I hope to be able to be your voice and ask the questions at the seminar. I am not sure if you are in Ireland or the UK.

    XXX

  • I'm in Scotland.its nice to know people are thinking about me it's very comforting.medical wise I very alone.im seeing my Macmillan nurse tomorrow and she is going to hear it all.carolyn x

  • Molly O, I cant really take credit for that expression, I have heard it from another lady and in fact it is true and we should be more informed and involved in decision making, after all its our bodies not theirs at the end of the day.

  • Thanks Suzuki. On a train now but I will post in the next few days as I feel I am facing a brick wall with no way to get round it. I am also a bit paranoid about medical teams going on this site and figuring out who we are individually and suffering a backlash if that is the case. Maybe I have seen too many bad movies!

    XXX

  • Dear MollyO never fear a backlash from this site,if your worried medical teams might be reading our posts, then don't fret because as Suzuki said the med team don't think we have a functioning brain ,so how would we be able to use a computer ha ha,

    I'm in the process of arranging 3 surgical opinions,I'll decide then what to do next.

    I think the most important thing is,we got to know our own bodies,we got to listen to our bodies.I knew I wasn't feeling right in July,so I rang nurse and insisted on scan.I had to insist and even though I was answered in the negative,I still vehemently insisted and was I glad I did, I had disease progression,the Avastin hadn't worked,and my next scan wasn't due until October.I found ,when diagnosed with cancer,you start your journey like a lamb,after awhile you start roaring like a lion.We're all survivors here, jasus,being told you have cancer,and still be able to stand up and carry on,is one hell of a mean feat! X x

  • Hi Strawberry,I know how you feel and rant and shout at us here in the forum.I had my list of questions for my gyne and Onc and,I would not leave their rooms without questions being answered compleatly.I had a booklet from a charitable org that deals with o.c and it suggested recording your conversation with the medical team,so you can play back and take info in better.Having said that,when I asked my gynes permission to record our conversation,he refused,stating ,the information act! The way I saw it,it was my information ,so why worry?i think they are afraid that if they say something during the meeting,it might backfire on them.

    The most important info I got across to the whole M/D team was,I know my own body,I know about o.c,I will if necessary ring up and request an earlier review or scan,if I feel something is amiss.

    Just realising I'm ranting also! Xxx

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