This is a bit tricky as individuals (both patients and nurses) are just that and so waht’s good for one, etc.
However, personally speaking, i agree with jane (alto) i don’t consider my self ‘ill’ because the cancer is in an appendage rather than a vital organ and so as it stood it wasn’t affecting me (obviously und’ that it would do if ignored), but the treatment is making me ‘feel’ ill.
I walked into the breast cancer clinic on nov 17th a wife, mother, daughter, sister, friend and teacher and left as a ‘cancer patient’ since then i’ve clawed ‘me’ back and appreciate nurses talking to me like i’m a whole being as opposed to patient.
Please don’t do the faux friend thing though. There’s nothing worse than someone chatting away to you one week then ignoring you the next: either keep it up or don’t bother thanks.
Listen to each other. Not a breast cancer situation but a friend had bowel and was advised not to have pills for sickness relief but liquid because of stoma and risk of being expelled before they work. Chemo nurse said it would be fine, friend tried to stress that other nurses had advised but ignored. To cut a long story - she ended up in A&E and on drip due to dehydration because of sickness due to pills being expelled. Needless to say she had liquid form next time but why did they ignore her? Is it because she was in the position of patient rather than intelligent person?
Good luck with the presentation, it’s a great idea to get ideas.
all of the medics,nurses and BCN ive seen have been 1st class, only wen i was admitted to hospital with an infection did i realise how under pressure from the non medical side of things the nurses are eg moving people from ward to ward to make room for new arivals (i was moved 6 times in 5 days)the accidental “sharing” of men/women toilets as this would bring an instant fine to the hospital and the basics like if the drip ur on beeps wat it means, i thought it was serious…for most of us hospitals are out of are normal comfort zones and can be frightening places just to have someone explain and take the time to lay any fears no matter how small or silly at bay…good luck
i am a nurse too and run a website for student nurses and im now a breast care nurse and have had BC twice and had a few different BCNs and a variety of other nurses and health professionals care for me over the the past 5 years.
one BCN who i didnt gel with just didnt listen… so i think its really important that nurses dont just think you should behave or react in a certain way because thats what most people do but look at you as an individual and ask how tehy can help you… what do you want to know or not want to know.
also access to service and knowing that you can get in touch and somebody will get back to you about your concerns or find somebody who can answer your question if they cannot.
the worst expereince i had during all my treatment was the simulator the fisrt time around when the staff didnt tell me what was happening, they had a young man who they hadnt intoroduced come in to put the tattoos on and was drawing on my nipple with a felt tip… i lay there crying and they didnt notice… i know they werent nurses but i think its equally important for all health care students to know what not ot do as well how to do things right… and it wasnt just that it was a bloke doing it but more that he hadnt introduced himself or told me what he was going to be doing.
Hi
My veiw of cancer nursing is the same as with any group of people. Some were wonderful others were diabolical. Two incidents stand out five years later, one made such an impact I get very upset during a recent therapy session.
Recovering from surgery and still in hospital.I went for a shower. came back and smiled at the male nurse (well he was cute). My dressing was wet but I didn’t want to make a fuss. When the same male nurse came to check my drain about an hour later he gently repremanded me. He wanted to know why I hadn’t asked for the dressing to be changed immediatley on my return from the shower. Quote " My job is to keep you as comfortable as possible."
Later during radiotherapy I had to swap teams one day because theives had been in and stolen the computers! My usual routine and lovely girls was swapped to another area of the hospital. A young man collected me and took me to his machine. He chatted pleasantly and tried to put me at ease. Then I realised he was expecting me to get undressed as we chatted. I am not shy,I still go topless on french beaches. But this just seemed wrong. It took him forever to set me up for the treatment and I’m sure it was because I was so tense and embarassed. I’m sure he was a lovely guy, just as caring and proffesional as the first but the incident seemed to strip me of any dignity.
I seem to have had the great and the terrible in all elements of the profession but always the issue is am I me or just another on the production line.
Regards Chinook
HI there, best of luck with the presentation. You have lots of material now!
I wanted to tell you that in 8 months of treatment (WLE, MX, chemo, rads) I saw 76 different health professionals - that is SO many people to be intimate with, to be vulnerable with, to touch your body, give you dangerous drugs, etc etc. I think it might help the nurses to think about that - and to think carefully about how they interact with a vulnerable and possibly not feeling very well frightened person when they could be the 76th health professional the patient has had to encounter in a very short time period…
the nurses who had bothered to find out about me and my treatment and SEs and didn’t need me to start the story again and again were great. I really valued that.
I have now argued long and hard with chemo ward and radiotherapy dept for more consistency in nurse allocation/radiotherapist allocation during our treatment cycles.
I found 76 people a lot/too many and I’m a huge extrovert!
Hi there, just thought I’d add my bit…
I’m also a nurse so am interested in all the comments so far. I would also like to add that my treatment and care certainly made me reflect on my own professional practice with patients.
My suggestions probaly reflect the previous excellent comments so sorry for any duplication. Just to say:
(1)Be there when the diagnosis is given and then take the patient to a private area /room where as many questions can be answered as possible. It was a bombshell to me and I really appreciated being taken out of the consulting room by the BCN to private room so I could make some sense of what was going on
(2)Treat each patient in the manner which you would like to be treated yourself
(3)Be as honest and consistant as possible in your replies to the patient. I turned into the patient from hell who couldn’t remember what was being said to me and insisted the BCN went over it with me again and again, only to become highly suspiscious if any info changed!
(4)Treat the patient as an individual, not as “another patient” diagnosed with breast cancer
(5)Understand the pure trauma that a patient goes through everytime they have to wait for results, and why it is important to give them results as soon as poss
(6)Understand that a paitent with this dx will worry about every ache and pain and assume the worse- therefore treat the patient’s concerns seriously and never be dismissive
(7)Take plenty of time to fit a patient with a prosthesis
(8)provide a contact number and respond to patient’s phone enquiries as soon as possible
(9) Consider contacting patients every 6 mths/yr to check if everything Ok and remind them of the contact number - often, when everything has settled and there is a big gap between clinic appts (say, 1 year) you can feel as though you have been forgotten. just a small note in the post , asking if all ok can be a nice touch
Hope this helps and wishing you all the very best for yor presentation. i think you should be very proud of yourself that you are doing this - anything to ensure that those dx with breast cancer 9and any cancer actually) recieve the best possible care and support, especially when this is based on recommendations from patients themselves
XXXXX
I’d like to endorse what others have said. Most of the nurses I have dealt with have been real stars.
I have encountered some problems and annoyances along the way. Most of these are not the fault or responsibility of the nurses and most of the time the nurses have done what they could. Most of the problems have had to do with waiting, which I am sure is a common complaint, especially unexplained waiting. If you have starved for surgery you were told would take place in the morning and it’s well into the afternoon, as happened to me twice, it’s helpful to know why, and I would think the ward nurses should be able to find out why, that is, they should have mechanisms and authority to find out. And the same with delays in clinics. It’s not very good when a patient’s name hasn’t been marked as present when they are. Someone should check, not by saying ‘Anyone not checked in?’ but by asking for the unmarked names. I appreciate this may not be specifically the responsibility of clinic nurses, again, but there should be ways of nursing and reception staff to communicate.
Post surgery, ‘little’ things can make a difference, such as having a cannula removed when it is uncomfortable and being able to go home without unexplained delays. It’s too easy, post surgery, to begin to imagine all sorts of reasons no one has taken the cannula out, or why they won’t let you go home.
The complaints I have had have been to do with organisation and management of nursing care, rather than with the care itself.
(i started writing this a yesterday and forgot to press submit so may not make sense in the flow of the thread)
unfortunately some problems are just unable to resolve such as knowing why somebody is delayed for theatre… most likely becuase of an emergency and in said emergency there is usually little time to be phoning ward to let them know a patient may be late for surgery… however perhaps what they do need to do is explain prior to this that your op may be delayed so that although they hope to get you in a certain time there maybe unforseen circumstances where your op is delayed.
in terms of ward discharge i can understand your concerns but discharges take hours to organise… perhaps on ward rounds they should explain that although you are fit for discharge its more likely to be nearer teatime by the time they have the paperwork, appointments and drugs ready for your discharge.
i think really it comes down to communication as you say… often wards cannot do things to prevent these situations but warning people of the possibility prior to such situations occurring would be more effective i think than trying to explain after the event… much in the way we explain to patients about blue dye, margins, and possibility of further surgery prior to surgery.
i also think in regard to happyshopper not all BCNs are there for follow-up… im a BCN for screening… we can be contacted up to the point they have their appt at the hosp… some units have combined screening and symptomatic BCNs whereas at my unit its seperate… we dont have seperate rooms for counselling but we are there during diagnosis and spend plenty of time going over what the doctor has told them and answering questions… i would hope that all BCNs do this and dont just do a runner when the doc leaves the room
unfortunetly we cannot be there to answer questions 24/7 but i do tell my patients to please call and leave a message day or night and we will call them back asap… maybe we need to look into other things such as a 24/7 helpline to answer questions or just to listen to your worries and fears for the future…
my first BCN was absolutely fantastic, was really sad she had moved to another area when i git diagnosed the second time… but she is my inspiration… she listened, she understood, she cared, she was truley one of the best nurses i have met and worked with.
I wanted to thank you all for your contribution to this post.
I took one comment from each of your posts and used it as a quote on my presentation. At the end of the presentation I handed out evaluation sheets to the students with 8 questions. Question 7 asked " Will hearing the patient perspective encourage you to reflect on your own practise in any way" Without exception every answer was well thought out and very positive. The feedback was that the students gained so much from this exercise and learned more than they would have from a book or traditional lecture. 100% of students will now strive to appreciate the individual patient, and will reflect on their self-awareness, attitudes and communication skills to improve patient care. The presentation was so positive that the university have asked me to return to do it again, and also to consider filming it for use as a valuable teaching tool for future students. It is a small step, but I feel that I have at least made an impact on one group of future nurses, and will be working with the university to find other ways of promoting good patient care using the patient perspective.
Thank you again ladies, for sharing your own experiences and for giving me the confidence to take this project on.
Well done - that’s really great news and let’s hope that they stay as open and receptive to the patients’ views as they obviously are now - thanks to you!
Fantastic that you have made students think about the patient in all of this.With all the pressures on NHS staff these days the patient seems less and less important.I think its important for students to see things from a patients prospective.
Well done!!!
Well done Luggy and thanks! You should be very pleased and proud - I’m very grateful, it is good to know patient perspective is being taken into account!
Good luck with the future projects.
Julie x
