Not sure how I explain but since I got liver mets dx I am feeling as tho the treatment room nurses have writen me off - mine appeared five months into treatment so not sure if speed of reccurrence is why they are this way with me. They keep asking how my eldest is coping knowing I am going to die, whilst I accept my position I don’t expect them to sit banging on and on
every time I go in. They used to be real cheery etc but now it’s all sympathetic looks and gloom and doom. Then there isbthe work front - they are sayin
what’s the point in going back enjoy what’s left yet my pal who had wider spread mets completed chemotherapy and is back working and nothing was said to her. I am so angry atnthe way I am bein treated - I AM NOT DEAD yet!'!!! why are they treating me this way. I don’t sit bubbling or acting vulnerable so
what’s the game??? They speak in open in the treatment room bout me bein terminal and I see other patients recoil in horror, so how come they never spoke this way to my pal but do it to me constantly. I dif
d tel onc bout this and she spoke to head but nothins changed in fact the more I say the
more they try to say I ain’t coping arghhhhhhhhhhhhhhhhhhhhhhhhhhjj so bloody negative. May as well go book funeral.
Signet this is horrible ! Like you say you’re not dead yet. & from what you said before, your onc seemed quite positive. How can they expect you to ‘enjoy the time you have left’ when dying is all they’re talking to you about?
What hospital are you at ? Do you have to go there or could you get moved to another ?
I would contact onc & say nothing has improved & ask how you can go about complaining, or could you ask to meet with the person in charge of these nurses. You certainly don’t need this, it can’t be helping at all listening to that all the time.
Thinking of you & wishing you all the best.
Let us know how it goes & hope you get them sorted out & soon.
xxx
Hi it’s the Borders general in Melrose. Could prob get western if I try as my onc is there too. It’s getting me down especially having a pal who had wider spread mets who never got this approach
. That’s also bit complex cos I
think her way is to ignore it and act as tho she is clear now so she is ok. She never contacts me first anymore since my liver mets but I suppose we all cope diff. But it’s vry all town here and them openly sayin things bout me bein terminal in there is as good as hiring a town crier.
Does anyone know if it primary cancer ow grade etc has bearing on the prognosis of the sec cancer? Why I ask I had grade 3 primary but she said we got liver
mets early and just three very small lesions there.
My pal on other hand had dcis five yrs ago then it returned in lymph nodes breast bone liver and bones. So to me it sounds as bad as me if not worse yet she isn’t being treated the same way. It’s almost like very pos and no
fuss and all happy go lucky.
Signet I am completely disgusted at the way that you are being treated. As Divvy says is there a head nurse or nurse manager you could speak to - or get someone to speak to them on your behalf? As well as being completely unprofessional in the way they are talking to you they also have absolutely no right to discuss your case in front of other patients - what bad practice!!!
As we all know there are so many treatments out there and some of the women on this forum as inspirational in how they have lived and continue to live fulfilling years with multiple mets. How dare they treat you like this I am bloody fumming. Perhaps you could also call the helpline and have a chat with them.
Sending lots of love and hugs you have my 100% support and here’s to many years for all of us. F… them!!!
Anne xx
I’ll bet you are angry. Its bang out of order and I am sure consitutes some sort of harrassment, particularly when you have made it clear you don’t want these comments. On one of my more outspoken days I would probably tell them direct that I didn’t appreciate their approach and what I expect otherwise. On my more timid days, I would put a complaint in writing (outlining what the problem is, that you object, that you have asked for it to stop, that it hasn’t and request a statement from them detailing what changes they will make to correct the situation and their committment to it).
I am 18 months on from my liver mets dx and I have never encountered any personal comments or infrigement of my privacy by any member of the medical team and they actively encouraged me to go back to work and live my life.
Good Luck.
L x
Thanks girls sorry bout typos on new I phone and fat fingers don’t go down well. I am real wound up and feel like bursting into tears every time but they would then say it’s me. I wentnin today thinking give it fresh
chance and welfare benefits lady came thru while I was bein treated talking like a fog horn bout my
appeal got backdated dla. To top it a student was sitting watching nurse
administer my meds and room was full, I said to her we could discuss it on Monday when she is visiting me at home but still she went on, I couldn’t say anything
cos felt tears building up with the humiliation. They have no respect for privacy and are so negative. I got a row for sayin
was having bens pal round, she said I was being very silly. What
am I to do just stop being a mum!!! Then
the carry on
with dressings for picc line I have to pay for them on prescription they say they
don’t stock them. Just so fed up could scream XXXXXXXX glad u lot
don’t think it’s me cos it’s honestly not
Hi Signet,
I am appalled at this thoughtless behaviour of your nurses, I too am a nurse, with over 26 years of looking after patients with chronic kidney disease and this sort of treatment given to you wants to make me cry. I can’t make the situation better, I wish I could - but I really suggest that you speak urgently with their manager or better still the Matron looking after the area to express your concern and hurt over their attitudes.
If they have such wonderful insight into this awful disease, maybe you could ask them for the lottery numbers as they obviously have a crystal ball!!! lol.
Please let us know how you get on.
Regards,
Marjay xxxx
Signet I know it was rads we had at the Western & so if you went there it wouldn’t be to the same place, but the staff were all so lovely, maybe that’s the culture throughout the hospital, so if you can get to go there I think I would try that. Also they possibly are more experienced than at Borders General. I think you had quite a journey to get there though, could you cope with that?
All through my treatment I have told myself the health board wouldn’t spend all this money on me if they didn’t think it would work. Surely that’s the case with you also.
At the very least, is there anyone you can get to go with you for treatment ? They might not be so free with their comments then, or mayne they would be just the same but you would have a witness/witnesses. It’s appalling as well them saying these things in front of other patients, can’t be doing much for those peoples’ confidence either.
I’m so sorry you’re having to cope with this extrs s**t just when you probably feel least able to fight back.
If you do manage to change hospital, I wouldn’t leave it there either. I would get the name of that person in charge & write them a letter of complaint, or get someone else to do it so that you just have to sign it. If you can, keep a wee note of the comments & who said them. But I know this is all easy to say,not easy to do if you’re not feeling great.
Thanks marjay that made me
laugh xxxxxx I know I have to say more as it’s really affecting me now x davina it’s so nice to hear from u and I hope ur well xxxx thanks to you all and I think I
am goinnto call helpline tom to talk it over cos a situation where u do begin to question yourself and ask is it you even
when you know it’s not! It’s makin me Ill tho as if I
am not bad enough x
Think worst and hardest part is to see my pal sail in and out without any
of this and the fear of takin a friend with to hear the alarmist attitudes x x x
Maybe taking a friend’s not the right thing for you, but if I wasn’t so far away I would come with you in a heartbeat.
It’s not you, & don’t let them make you feel as if it is.
If you call helpline tomorrow, promise to let me know how it goes, on here or you can pm me. I will be waiting to hear.
You just don’t need this on top of everything else & as far as the kids having friends round, of course you have to keep things as normal as you can for them, what else would you do ?
Signet it is definately not you!!! I know of no-one who has experienced this sort of lack of confidentiality and negativity of nurses whilst receiving treatment.
We are all here for you Anne xx
Thanks much again girls your support
really helps. Think I feel so
frustrated trying to live my life as best I can
and be there for my kids but they knock me down at every turn and they shuld be providing support and positivity. Big big sighhhhh xxxx
They should be ashamed.
I’ve been so lucky, had loads of support from all the staff ;ooking after me.
I think it would be a good idea though if they were encouraged to log onto forums like this from time to time & read some of the posts. It might give them more insight into how we feel.
Talk to you tomorrow Signet - bed time for me. Hope you can manage a good nights sleep & feel stronger in the morning.
Love
xxx
That’s an idea - why not print off what you have posted and our replies then send to their manager, then they might understand how we have a right to be treated. Hope you are feeling a bit better.
Night night Anne xx
Hi Signet,
Have just sent you a PM
Marjay
Oh Signet, I’m so outraged at the way you are being treated. Living under the black cloud of this illness is bad enough without having totally insensitive comments to deal with. I don’t know about you, but I feel much more emotional since my secondary diganosis and, like you, would probably feel too emotional to deal with this directly. I agree that you should speak to your oncologist again and also write a letter outlining your concerns. Do you have any other support ie. Macmillans? P’raps they could help you voice your concerns.
We’re all rooting for you, please don’t get too down.
Alison x
These nurses discussing you and your treatment in front of other patients is a blatant breach of patient confidentialty and the consequences for them are severe. Your treatment is private and should only be discussed between you and whoever is caring/treating you at the time. I would most definitely complain to whoever is in charge about that - absolutely disgusting.
I really wouldnt read too much into what the nurses imply by what they say. Chances are they dont really know much about the complexities of breast cancer and are jumping to conclusions, probably the wrong ones. You need to speak to your oncologist and get the facts from them. When my son had cancer (this was 17 years ago and he is now fine), I remember one community nurse who came to change his dressings at home telling me that he wouldn’t survive and a radiologist who did his scan once, also said something along the same lines. Luckily, I had great faith in his oncologist and went to her immediately and told her what had been said. She was furious and both got a real ticking off and they clearly didnt know and were just talking rubbish. One other thing - don’t compare your condition to anyone else’s. Cancer is so different that the same type and grade etc can affect one person completely differently from another. Speak to your oncologist, get the facts, report the nurses for breach of confidentiality and remember they dont know your cancer etc like your oncologist.
Hi Signet
I am sorry to read about the difficult time you are having, it sounds very stressful and upsetting for you. I just wanted to remind you that we are here to support you too and you are welcome to call our helpline for further support and a confidential ‘listening ear’ may be helpful. The line is open weekdays 9-5 and Sat 9-2 on 0808 800 6000.
You may wish to consider speaking to someone at the hospital about this situation, PALS (England) or HRIS (Scotland) should be able to support you and will look into the problems you are having there.
I hope this helps
Take care
Lucy