I have had Mastectomy, Reconstruction, ANC, Chemo, Rads, Tamoxifen, and what seems like a hundred different scans and tests. I have been a cancer and palliative carer, nurse and patient. Now I have been invited to speak at our university about my experience, and will be addressing student nurses. I have struggled with what to include in this presentation as I want to deliver something that will encourage new nurses to aspire to improve care and cancer services and not just recent statistics and pathophysiology of the disease. I want to ask other women to share with me any examples of good and bad care they received, or your biggest fear, your feelings or anything that has impacted on your experience, so that I can pull out some common themes, and as a result speak for the majority. Any views shared will be completely anonymous, and hopefully will give these students a more inclusive understanding of the feelings, fears and needs of cancer patients. I am not an experienced public speaker, but will be speaking to 300 future nurses on 7th March. If you can, and feel comfortable doing so, please contribute your views, and then I won’t feel so alone on that big stage!
I think there are almost as many different “right” ways of doing it as there are people suffering from BC.
I don’t generally respond terribly well to the “concerned look on the face and the almost immediate arm around the shoulder” approach, particularly when trying to get my head round what I’d been told at diagnosis, but there will be others who will find that’s absolutely the right thing for them. Others who get the business-like treatment might feel as if their BCN is being uncaring and would just love a hug.
Regarding information, I needed to have lots and lots of detail, whereas for others that would be overload and they would want the barest of outlines until they’re ready to ask for it. Get it wrong and you could end up with great frustration at one end or massive terror at the other.
For breast care nurses I think the most important skill to develop is an ability to read the people they’re dealing with so they can deal with their patients in the way that is appropriate for the individual patient, and that must be about the most difficult skill to develop.
On the subject of presenting, the simple rules can be the best:
Tell 'em what you’re going to tell 'em.
Tell 'em.
Tell 'em what you’ve told 'em.
Best of luck, with your experience from so many perspectives you will be a very valuable presenter, and your Q&A section will, I suspect, be particularly interesting.
What I appreciated most was when I felt people were alongside me.It was important to me that I felt listened to.Sympathy didn’t go down well but empathy did.I found staff that were cheerfull and positive in their approach comforting.An explanation of what was happening was very useful. I liked it when nurses introduced themselves telling me their first name.I didn’t get it very much but anything that seemed to be patronising was not helpful.My fears were and are waking up after an operation,not being around long enough to see my children settled and being a burden to anyone.Having said that I think many of us manage to stay cheerful and positive most of the time.
As an ex-nurse myself I can only agree with virtually all that Chocciemuffin has said. What suits one patient will be anathema to another- some of us are touchy-feely and some of us are definitely not! Some of us want ALL the info and others really don’t.
I think the most disappointing thing I found was that not all the nurses seemed able to see you as an individual. I know they are busy ( though not all the time!) but treating each person as if they really matter should be the absolute bottom line in nursing practice- and if they don’t teach them that anymore, God help us all.
All nurses really need to hang onto the reasons why they became nurses in the first place- and if they can’t actually empathize with their patients, then they’re in the wrong profession. It doesn’t harm either to remind all the thousands of people who work in the NHS that if it wasn’t for the patients they’d all be out of a job!
I had many positive experiences but did find that some of the chemotherapy nurses showed more technical expertise than TNC. I definitely felt I was just another ‘BC case’ in that dept. - a really isolating feeling and one that only receded when I went for Rads- and rather sadly found more kindness from the young radiologists than I had experienced from several of the chemotherapy nurses.
Luggy,
Good luck with your presentation, I’m sure it will go well.
I basically agree, I think the most important thing is to feel like you count as an individual and your needs are being taken into account, not just another patient to be dealt with, canulated etc.
Both myself and my sister have had bc (I’ve now got mets)but we are very different in our coping, I want info and feel more in control that way, my sister wants to know only the necessary.I do think though, that it is very important that you make it known to patients that when they are ready, and if they want it, there is information around and how to access it.
Another thing I think important as a patient is that you are given an idea of how things work ie what are likely next steps in terms of appts, how you’ll get results, and who you can contact if you want.
Just remembering that we are vulnerable, frightened people would help, I don’t necessarily want tea and sympathy but I do like to feel they are dealing with ME.
On the whole I have found most nurses to be good but sometimes, and unfortunately,the chemo nurses can seem too busy and interested in the medicines etc rather than the person.
Best wishes, and thanks for preparing the future generations!
Julie x
Echo all the above! I had a cause to have a ‘chat’ with the senior breast care nurse at our local hospital…not a good experience …
This was due to being asked to write a letter about the approaches of the bcns by one of them!!!
I am a trained facilitator and trainer, work as a consultant in community development(this is in addition to and part of my self employed work & business) and have worked in nursing many years ago HOWEVER…
Despite my pointing out that patients were actually the same as customers in that they were accessing a service…i.e. treatment and needed their individual needs addressed…and…that they were volunteers for the treatment and not being made to have it forcefully, she could not see it that way…she could only see us as victims…interesting!
I agree with the above, although I have to say that I have received fantastic care and treatment. I was a neonatal intensive care nurse until fairly recently, but nothing could have prepared me for what was to come.
My biggest fear was/is dying. When first diagnosed in 2004, I felt sick to the pit of my stomach about what lay ahead of me. As time went by, and after my mastectomy and reconstruction, the fear faded into the background. This means that the fear was always there, lurking in the background. My fear by now, was that would it come back? Every ache or pain that I had, raised that fear. I would like to make this story nice, but it’s not, because it did come back. So I now have secondaries in my spine. Was it my fault? Was I not positive enough? Did I not look after my body? Did I drink too much alcohol when I was younger? I’m in my late 50’s and although my life has been pretty ‘normal’, I’m not ready to go. I would probably say the same if I was 99!
I now lurch from one scan to the next. The sick feeling in the pit of my stomach, is still there, but I now enjoy each day and look forward to the future. I make plans and hope and pray that my disease stays put. I am not/and do not feel ill.
I ask myself all the big questions in life…does anyone have the answers?
So Luggy, I don’t know if any of the above will help you in your presentation, but you have allowed me to think and write about my feelings. I needed that. So now to feed the cat! You see, life goes on.
Good luck!!
I’m an ex nurse myself and I’ve had very mixed care since my diagnosis in 2009 - some has been fantastic and some appalling.
The best care has been:
Treating me like an individual
Realising that however many cases the nurse may see each year that it was a terrifying experience for me.
In the case of the BCN, making sure that I knew how to contact them and them responding and acting as my advocate.
After surgery, anticipating my needs so that my pain control was well managed and all my medications looked at. (For example, I’d lost so much weight during chemo that the tinzaparin dose I’d been prescribed was too high, the nurses picked that up and I felt cared for).
Talking to me like a ‘normal’ and intelligent person but with empathy.
Telling me what was going on.
Just being professional.
The worst care:
Being put on an orthopaedic was 3 days post op, on a ward where the nurse didn’t know how to measure drain output and messed up the charts. Plus no acknowledgement of the trauma I’d been through having a double mx.
Being talked about during my initial hospital appointment but no-one telling me what was happening. I obviously worked out as they were taking biopsies what they thought.
Feeling the stress of the BCN at one hospital who was clearly fed up with the situation and was passing that on to her patients.
When I had neutropenic sepsis not giving me pain control when I needed it badly because the drugs trolley was on its way (40 minutes later…) Being shut in a side room where no-one came to see how I was or to offer me help.
Lots of luck with the presentation.
Elinda x
Hi Luggy,
I agree with all the above, and would like to emphasise the importance of treating people as individuals and basing your approach on the person. My mother has just come home after 12 days on the ward with neutropenic sepsis. On the whole she was treated wonderfully, but I’d like to tell you two of her less happy experiences.
She is very mobile and usually extremely fit, but was given clexane injections daily. On day 3 her nose began to bleed, and she asked me about the injections (I’m a paramedic). I explained what they were, and suggested she spoke to one of the nurses about why/if it was necessary. The senior nurse she spoke to got cross with her and told her she had to have the injections, so mum refused. When mum spoke to her lovely junior doc later, it was agreed that she could miss the injections for a couple of days, and it was explained why they were necessary. It’s her body!
Secondly, when she went for her third lot of chemo she got the most senior nurse who gave everything as quickly as possible (Hickman line). The other 2 nurses had taken around 1/2 hour, this one finished in a few minutes. Mum felt physically awful, and she was upset and afraid about having the chemo anyway. I don’t know about chemo, but I do know that when I administer almost any IV drug I get far fewer problems when I give it slowly, so I guess chemo should be the same. Additionally, if you’re calm and slow with these things, rather than rushed and obviously trying to finish fast, the patient feels calm and in control, and more like a person rather than a pin-cushion.
I’ve just realised that both of these examples have to do with control - that’s what you lose when you have an illness like cancer. As my consultant put it ‘Your body’s lost control of those cells’. So the more you can be helped to keep control over little things, the better - and more positive - you feel.
Good luck with the talk. Lynne
I have to say that the nursing I have received has been excellent. But of course improvement is always possible in any field. I think the thing I would emphasise is that nurses should remember that part of their role is to be patient a advocate. When I trained as a nurse many years ago, there was great emphasis on nursing being a separate and distinct profession, and I recall, occasions when Ward Sisters challenged doctors who they felt were not acting in the patients best interests. But these days, I hear accounts from people who have received very poor treatment, and I wonder why their BC nurses have not challenged this on the patients behalf, or at least sensitively guided a patient to seek a second opinion.
Hi
I just wanted to say my BCN and I have had major personality clashes over the last year. I feel that she does not understand what happens when you receive a dx with a disease that you know vitally nothing about and what you do know is probably wrong. You do not know what is likely to be bc related or even possible. I remember her saying to me that she remembered a women ringing her with sore toes wondering if it was bc related, she thought it was ridiculous. I on the other hand thought it was reasonable, because if no one tells you it is v unlikely how do you know.
So women like me ( and we are all different ) need a gentle but crash course in how cancer works. This would stop a lot of unnecessary anxiety. And the key for me to a BCN s role is dealing with anxiety while medically assisting with dx.
Debx
Hi Luggy,
I would like to wish you the best of luck for your presentation. I had very limited expeience of giving presentations but had to give one as part of my interview a few years ago. I practised in front of my best friend and my son (he was 14 at the time) and they gave me brilliant feedback.
I haven’t had much contact with my breast cancer nurse. She only seems to be there when I get bad news (mind you there isn’t much good is there?). Saying that, when I felt that I had been bombarded with too much information on my diagnosis, I wrote a list of questions and she was happy to see me again and go through them with me.
I agree with many of the ladies about being treated as an individual. For me, I found that I was given just too much information at my initial diagnosis. I just couldn’t
take it all in and was horrified when she wanted to show me the prosthesis. I just didn’t want to see them and needed to get out of the hospital as quickly as possible. It was way too much for me, surgery, chemo, poss Mx and delayed reconstruction,radio, hormone treatment, herceptin and then the prostheses. All this when an hour before I was well with a holiday planned.
When I had my surgery the nurses were generally good; one nurse was so lovely and when I couldn’t sleep and was hungry at around midnight, she made me a lovely cup of tea with toast and marmite(It’s just a little thing but it was so kind of her). But on the other side of the coin; One day I was bleeding and leaking, feeling very uncomfortable and my nurse kept saying ‘I’ll be with you soon’. By the time she got to me about 3 hours after coming on her shift, she called a doctor immediately. She then couldn’t answer his questions when he asked how long I had been like this, because she had no idea. She did however apologise to me after and said she felt very guilty but was so busy. All she needed to do was have a quick peek at my wound.
Best of luck with your presentation Luggy,
Lisa
Thankyou ladies, first for taking the time to post a reply, and second, for being so consistent with your views! There is certainly a common theme about the good and the bad. and it reassures me too, that I am not alone in my own perceptions and views. I will focus on issues of communication, advocacy, empathy, individuality and information but will not finalise my speech for a few days, in case anyone else wants to contribute. I hope this presentation will provoke some deep thought and understanding amongst our future nurses. I would not have been brave enough to do this without the support I have received throughout the past 2 years, and feel this is my way of giving just a tiny bit back, and hopefully contribute to making this an easier journey for at least some of us taking their first steps on this experience. I feel quite priveliged to be given this opportunity and want to make the best of it. Thankyou all again.
Have to be quick but want to reply to this.
Overall my care has been excellent-my bcn is rarely available immediately but always calls back asap which is very important.People in our position only ring when we are worried so we need a rapid response.
We need to be treated as individuals not as just another 'bc lady[as in ‘I find with bc ladies…’
A good bcn can provide a direct link to the surgeon or oncologist but mine will also set up appointments with her to discuss/examine etc which has been invaluable.
She is always around when I have my follow-up appointments and was there at my dx.She visited on the ward after my op.Even now after 4 and a half years she is ready to see me/talk to me if I call.
My negative experiences were on the oncology ward of my local hospital where,although no one was unkind,the staff were over worked and the conditions not ideal.
I used to give talks to medical students at the GP surgery and always said,‘never dismiss a woman’s concerns about her breasts on grounds of age’.Too many people have had to wait for investigation because they were ‘too young’ for bc.
My experiences have been mostly fabulous with the bcn and particularly the chemo nurses where I am being treated. What has made the biggest difference for me, personally, is still being treated as an intelligent, curious adult, rather than a ‘patient’. The nurses have been totally prepared to discuss any aspect of the treatment with me, and were upfront from the offset about my right to make decisions over treatment, over how much information I wanted (all of it!),and were even extremely clear that they would support me to the hilt whatever I decided… even should I have decided that I did not want any treatment whatsoever. I have never, at any stage, felt that I was just another parcel on the conveyor belt, but rather, that this is my body, my treatment, and my views and concerns are the most important thing to them. I’m quite sure they would often rather have a patient who didn’t question everything (!), but for me, it would be terrifying to have everything mapped out and no say in any of it. And I would find it humiliating to be treated as though I were incapable of making any decision - or indeed, even being asked if I would like to make a decision.
The other thing that has been hugely important is the continuous stressing to me that ‘this is the number to call if you have ANY worries. Let US tell you if it’s nothing important… if it is important enough to weigh on your mind at home, then it is important enough to pick the phone up to talk to us about’. Such a relief! The flip side to wanting to retain an adult stance, is sometimes a reluctance to raise what might be a trivial issue - so being given the correct phone numbers and the reassurance that no enquiry is trivial, right from the very first meeting, and re-iterated constantly… takes the ‘guilt’ away - the ‘guilt’ of feeling that we might be bothering nurses who are already very busy dealing with ‘real’ problems… when we’re not sure if our problem counts or not.
Honesty and humour are the final things that have really helped me. I broke down in floods of tears to my chemo nurse on the phone a couple of days ago, and she was utterly supportive, told me that I should have rung sooner (!) that TAX was ‘a bitch of a drug’ and that they would phone me the next day too to see how I was doing… and they did. The humour is all pervasive on the ward, it is possibly the smiliest, friendliest environment of any hospital I have been in, and this is absolutely down to the nurses.
Sophie xx
On the subject of Breast Nurses, mines was really good, but I didn’t feel I needed the level of support she was trying to give me as I am a very emotionally strong person. I did initially feel that the BCN’s at my clinic were more trained to deal with women who were not coping at all. There was one (now retired) who took me to the ward when I was admitted for ANC and she kept saying “this is a very crucial part of your treatment” which spooked me a bit because it was as if she was saying I was going to die. Another BCN was very abrupt in her attitude and I met many women who did not like her because of this, to the point the felt she should not be working in this field.
As an in patient, when I had my ANC the nurses were generally good, but I asked for help when I had difficulty washing my hair on account of my arm and was told they were not permitted to do this. The day before my discharge was a Sunday and there was an agency nurse on who told me the tube from the drainage bottle had been inserted in such a way that the pain would be horrendous when I had it removed. When I told the regular nurses about this as it was about to be removed, they were furious and said they would ask not to have that nurse on the BC ward. In the event she was talking rubbish, it came out painlessly and easily.
I also had a week in isolation with a severe chemo burn to the back of my hand and wrist. I had massive blisters, but again the nurses said they couldn’t help with things like the shower, so my OH came in every morning assist me. I also had a ward sister at that particular hospital who thought she knew more than the entire medical profession put together. When they got to the bottom of what was wrong with my hand (it was not certain it was a chemo burn because it came up over a week after the infusion was given, so they were trying to see if they could grow a culture from the fluid), this nurse smugly looked at me and said “I could have told them that”. She really rated herself and was very overbearing.
The nurses I absolutely could not fault were the ones taking care of my chemo. They were just marvellous, their professionalism was first class.
Sophie, your last comment is exactly how I feel. My chemo unit is lovely and I feel a lot happier and safer just walking in through the doors. The atmosphere is great - the nurses all know me by name even after just two chemo sessions and I feel as though I’m a real person to them, not just a patient. I don’t want sympathy and sad looks - what I need is to be treated as an adult and with a certain amount of humour!
I don’t know how others feel about it, but I didn’t feel ill before I was diagnosed and don’t consider myself to be “ill” now - it’s the treatment that has made me feel poorly, not the disease. I don’t feel like a patient and don’t want to be treated like one! The odd cup of tea and occasional shoulder to cry on is, however, very welcome, but only on my terms.
I’m also very grateful for the attitude of my oncologist. There’s always a huge delay in appointments - I’ve waited for two hours beyond my appointment time in the past, but although I’m not keen on waiting I don’t begrudge it. Some other ladies on here have felt rushed at their appoinments but I know I will always have as much time as I need to talk and to ask whatever I need to. I was told yesterday by one of the nurses that she’s known a new patient to be in for an hour and a half for what was booked as a ten minute appointment.
What it all boils down to is what seems to be the general concensus here - we’re all individuals and need to be treated as such. It’s down to the skill of the medical personnel to recognise what we need and how to respond appropriately, and that’s the really hard part!
I wish you all the best with your speech Luggy, please let us know how you get on!
Jane xxx
Apologising for delays seems to really make me feel better since I know they are unavoidable but they make me feel that someone recognises the inconvenience to me - and anxiety this causes. One nurse at outpatients this week even apologized after just a 10min delay - it did make me feel better. I’ve had long appts when I’ve needed them - again that’s made me feel valued and supported when the issues have been complex or demanding and could not be rushed
And I do like a positive attitude - a smile, a bright eye from a nurse does help - not to devalue the challenges of our illnesses but it makes the day feel better - there’s one BCN at our hospital who is so dour with a downbeat voice that she make me feel depressed - need an upbeat but sensitive manner and this can be done in lots of different ways - some nurses achieve this with a quiet manner and others with a more lively manner -so they need to play to their strengths naturally I think - there’s is not “a” way but lots of different ways to convey awareness of individually sensitively.
Good luck with your speech
Fran
I have received excellent care from the vast majority of the medical people and consider myself lucky to have come across nurses and consultants who treat me in the way I want to be treated and understand where I am coming from.
I was diagnosed with bone mets at the time of my primary in July 07. The surgeon who told me was straight and honest about it without being frightening but the bcn, although she seemed nice enough, spoke to me at the time but I never heard from her again. I had to have chemo first and an urgent appointment was made for me to see the onc and start within 2 weeks. Her research nurse, who had looked after my mum too, was an absolute star. She sent a hand-written letter with info about what would happen and the drugs that would more than likely be used and then followed that with a phone call. She spoke to me for over an hour and that was really appreciated as everything was happening so fast. When I saw the onc, she was lovely too - very down to earth and matter of fact but in a caring way without being touchy-feely or patronising. The nurse was in with her too and we actually had a good laugh. I never once felt frightened. Once I started chemo, one of the nurses told me first exactly what would happen and then I was told I must ring them for even the slightest thing, day or night, and they would tell me what to do and that it was better to be safe than sorry. I did ring them a few times - always apologised for being a nuisance - and they were always fantastic. That care has continued right through to my continuing treatment. The onc too is the same, was so helpful when I applied for ill-health retirement, and even though clinics run late I don’t mind as she always gives you her full attention and you are never rushed. They are a great dept and example of how you should be treated as a cancer patient - I have seen the way they are with non-bc patients and they adapt to each one in how they deal with them.
My surgeon is also brilliant - very caring and understanding again without being condescending.
There have been a couple of occasions when I have felt things have not been as they should though. When I was in hospital for surgery, I was in my own room and left alone for the bulk of the time. Not great when it was my first hospital stay. On one occasion, I heard a nurse say he didn’t see why I should have had an op with mets as it was a waste of time/money…The ward was a general surgical one but they do all the bc cases there so should be used to it - perhaps it was the mets element they couldn’t cope with.
The other area is bcn contact. Again, I don’t know whether this is due to having mets or not. It is non-existant unless I have a query and ring them and wait for a call back whenever - can be several days. Helpful when it’s a casual query but otherwise not. I tend to ring oncology instead.
Sorry, I’ve gone on a bit, well a lot!! To me, the oncolgy dept never seems like one dealing with such a serious illness - I always have a laugh with them and they genuinely feel like friends wanting to do their best for you.
Suppose it’s horses for courses at the end of the day!!!
Liz
I should have mentioned that the chemo nurses were,without exception, absolutely wonderful.Nothing was too much trouble and they found time to sit and talk as drugs were administered.we were each allocated a chemo nurse at the start of the session and each nurse seemed to have 3 patients at different stages.That nurse collected and checked the drugs,inserted needles and stayed until all was going smoothly then popped back at regular intervals.
Valx