Hi
Having undergone 3 of my 6 FECs I have got acquainted with a couple of other patients where we’ve recognised one another from previous visits. Nothing heavy just a quick “hello again, I like your headscarf” and kind of an unspoken understanding that we don’t mind a quick exchange but don’t want to spend all day yattering we just want to read our books til it’s time for the chemo and then sod off, we are in hospital to get well not to make lifelong pals and that whilst we all have Cancer in common, every one of us has different circumstances etc. OK we are all compassionate of other cancer patients but mostly we are concerned with ourselves because if you can’t be a bit self-absorbed when you’re this ill then when can you!
I was really upset last Monday when another patient chose to listen into my conversation with the nurse as she begain administering my chemo, and totally made the conversation about HER, and sadly her prognosis is not good she has been on chemo for 9 months and is not going to get better and has every side effect you can think of - I left in tears and almost felt guilty for being given a good prognosis. I do not mind a bit of comparing notes with others especially if it is going to be helpful rather than a hindrance to share experiences, but I really thought she chose the wrong time, place and person. Forums like this are anonymous and you can choose whether or not to join in a particular discussion and react in your own time if someone has posted something that makes you sad or frightened or whatever. But I could not say anything to the woman like “please save it for your family, friends and oncologist” but on the other hand I didn’t know what TO say to her cos she is waiting to die so I couldn’t say “oh you’ll be feeling much better in a few weeks” When I was going home my nurse actually collared me and thanked me for my patience, which I took to mean my patience with the lady as opposed to my patience waiting from 8am til 12pm for my chemo. But has anyone else experienced this and how do you stop it happening again other than never making as much as eye contact with other patients when it’s in your nature to normally be friendly and chatty?
Hope this post has not offended anyone in any way
Even after 3 years of continuous treatment I don’t think I know the answer!!! I suppose for me, I try to sit with the women I know that have secondaries and try to avoid talking to newly diagnosed women about my cancer as I feel I may scare them even more. I will talk to them about other things because as you say the exchange of info is invaluable…
In the situation you describe, I would have thought the nurse treating you should have intervened and told the person to be quiet or direct the conversation elsewhere.
It sounded a horrible expereince for you and really someone else on the chemo ward should have intervened - I don’t feel it was your duty to.
Hope you don’t have another experience like that
Kate
Hi Kate
I have noticed that people who are having their chemo into what I think is called a hickman line, will get the curtains shut but since mine goes in my arm they don’t need to give me that extra privacy. But if she is there again next time I shall probably ask for the curtains, and take myself and my books off to another part of the hospital and stay out of the day room til it’s my turn.
The nurse did try and direct the conversation away from discussing symptoms but whatever we chatted about she butted in. but i feel bad for how I resented her joining in with so many negative things because she hasn’t got much to look forward to. I am a private patient but there is no such thing as privacy when you’re having all this done.
I sit randomly next to anyone. Yesterday i was fortunate to sit next to a lady in the waiting room who had a different occurrence of bc in her other breast, from her original bc 14 years ago. She was really positive and gave me loads of information. Then during chemo i was lucky to sit next to a lady who had had her mastectomy and node clearance. As i haven’t had my operations yet, i was very curious to see what the scaring looked like, and she was generous enough to show me. Usually i go with my partner, and we don’t talk to anyone. So it was a really pleasant change to talk with other people in the same boat.
For me it was a good experience, sitting next to other patients, but i can see how you were upset with the lady you sat next to. | just found it really helpful to talk to two women, one who has been through the wars, and is going through it again, and the other lady who after 5 years of suffering, finally got a conclusive bc diagnosis They gave me food for thought.
As Kate said, this is a difficult one. I’ve been in that position too. But as I was not well during the chemo - blood pressure problems - the chemo nurse said she would put a screen round me, which was much better and the other 2 patients just carried on chatting amongst themselves. Apart from anything else, I was not in the mood to be chatty, despite normally being a friendly and outgoing person. The other girl may , of course, not have known your prognosis, so her discussing symptoms might have been directed more towards the nurse then yourself. As Kate said, once you have had a recurrence or secondaries, it is probably best to stick to others with the same prognosis and/or treatment. I remember clearly when I first walked into my BCC suppport group and they asked me to introduce myself. When I said I had a recurrence, I could almost feel the atmosphere change. I got the feeling that their worse nightmare had just walked into the room!! Nobody chatted to me at all for a few weeks, apart from the organisers, but since I am still around and don’t have any obvious symptoms, things are fine now. It is always dificult to find a balance between being helpful and honest , but at the same time not frightening girls with primary diagnosis.
See how it goes next time, and if necessary ask the nurse to draw a curtain. Just say you prefer a bit of privacy, she’ll understand.
Birgit
this sounds incredibly difficult for all - attitudes that
oops… pressed the wrong button…
sorry
attitudes that make us feel alienated - whatever stage we are at are ‘wrong’ but someone who would not tlak to me at work when i was first diagnosed (used to scuttle into loo… walk the other way…i was tempted to follow her but never did), is now since me going back to work …absolutely fine… weird.
the group sounds a bit like AA… hi my name’s jennifer i have… hopefully it is much nicer in real life
I’ve only been in tiny ‘cells’ with walls when having chemo - now on tabs… so i didn’t have anyone except the nurse talking to me. IV chemo felt intensely personal, i think i would have found it hard to chat.
I take Kate and Birgit’s advice… i would not ever wish to frighten anyone with what happens to me - whatever it may be - thank you for the wise counsel.
I hope next time is more peaceful clarabel.
Where I go there are two or four of you to a room with no curtains, just chairs to sit in. For my first TAC I was with a very nice lady and we had a good chat, but I dread having to spend hours with someone who isn’t as easy to get on with.
I must admit that I’m more scared of saying the wrong thing at chemo than I am of the side effects. I’m just a plain ole primary girls at the moment and I would never want to upset anyone and some reactions on this forum have made me think I’d better just keep my mouth shut until I know the others so as not to offend anyone.
I know that there will be people there who are dealing with much more than me, it’ll be my first dose in about 2 weeks. I saw the room last week and it seemed like a friendly enough atmosphere even thought I’m sure every single person would have loved to be somewhere else (almost anywhere I would have thought) and the nurses are nice enough but I don’t want to come across as aloof to the others when its my turn and I don’t want to say anything that would upset them.
I do read some of the secondary threads and don’t personally feel that knowing someone has secondaries would make me offish at all, but myself and others have said things here that have upset some members of the group even though were just talking about how we are dealing with it (and not in the secondaries area either). I’d hate that to happen in real life when in a room I can’t leave for an hour or so. So I shall zip it I think.
Anyone got any advice for a newbie to chemo like me? How not to put both feet into it at the same time?
Cheers
Angie
hi Angie
I think we all know first hand it is so hard to know what to say to a cancer patient. People who have no experience of cancer stuggle to know how we would like them to treat us when we have to tell them what’s happening to us. I think the best thing is to take reading material with you and if a person tries to strike up conversation with you and you don’t feel like participating, just keep it minimal and make it clear you are fixated with what you’re trying to read. If you DO feel like a chat - which you may well do as there is a LOT of waiting around on chemo day and only so long you can read for (take a good book AND a selection of mags so you have variety) try and talk about non-cancer-related things if you can.
it was not that the lady scared me with her symptoms and unfortunate prognosis it was just that I didn’t think I was the appropriate person to offload to. It’s like, any of the ladies on here has small children, they do need to be aware of why their mum is not her usual self but they do not require all the gory details, and neither does the lady behind the counter at the post office. There are nurses and counsellors for all that, if a person is not lucky enough to have a good support network in their own family and friends.
You will find you can tell quite easily whether other patients are chatty or not by watching them. The nurses will be lovely, when it is your turn for the chemo you can have a one on one chat about anything you like. I got the same nurse the last 2 times, and we got chatting away. She was telling me about herself, which was nice, and she said “last year I had a baby boy, a labrador puppy and a pony in the space of about 2 months” and I said “that must have been bloody painful” :0)