Breast Care Nurses Questionnaire

I can honestly say that I have confronted my fears and emotions on this disease. I’m just a very pragmatic person and this is another of life’s challenges for me, albeit the biggest one I have ever had! I really hate people making a fuss and fussing around me and I also don’t want to be discussing cancer with everyone I know all the time as it is too easy to let this thing dominate your life. I’m very much the sort of person who needs to keep things in perspective.

Two things have greatly helped me. The first is the memory of a relative who passed away last summer. She had BC 35 years ago when it was a death sentence, yet she lived to old age and remained healthy and happy afterwards. The second thing is I know someone who is in the field of oncology and this person has given impartial advice which has been of great help. I have a great deal of support which is why I am glad for the BC Nurses resources to be used for those who may not be bearing up as well emotionally and psychologically.

I don’t think the labelling of oneself or other people is particularly helpful in giving and receiving support.

If I labelled myself as strong because of the way that I have dealt with breast cancer, it would imply that I had appointed myself as a role model for cancer patients and I regarded people that don’t deal with cancer in the same way as weak. That would immediately put my relationship with other cancer patients on an unequal footing. So I don’t label myself.

I believe the best form of giving support is to talk to other people on an equal basis about shared experiences and give them the space to think about and talk through their feelings. That means letting people discuss cancer much of the time if they want. It doesn’t mean that they are letting it dominate their lives. It means they are dealing with it.

I don’t think jollying them along and encouraging them to think positively is particularly helpful. It might work for some people, but for many it won’t. In a support relationship where one person perceives themself as stronger, I wonder who gets the most psychological and emotional satisfaction out of it - the giver or receiver.

And which of us is qualified to make a judgement as to other peoples’ vulnerability and whether they are bearing up psychologically or emotionally?

I agree, absolutely, with Daphne and for some of us, sadly, bc is still a death sentence.

here here daphne …well said.
Cherry

It drives me mad when people say “you must be positive”, my mum and sister say this to me quite a lot and I really have to restrain myself!!! My response is always to say “I’m being realistic”, I don’t dwell (as they call it) on the negative but equally I’m not blind to the possibilities. It does no-one any good, least of all me, to think that everything will be ok when I know that there is a chance it may not be. This does not make me miserable or a “prohpet of doom”, what it does make me is aware.
Claire x

Breast Care Nurses Hi Daphne

I think you’re right, there are always going to be people who "hide " behind their jolly stiff uper life approach while dealing with Breast Cancer…or anything else come to think of it.

However, I can assure you this doesn’t necessarily mean that there are not people out there who can just face up to their cancer or to anything else in life without pretending.

I have never pretended at any time during my four years of living with cancer, and it would upset me “slightly” that anyone could think that because I haven’t searched for help and support in all areas available that I have not properly confronted my breast cancer.

My attitude to my cancer is simply, what will be will be, whatever I do or say or think. The eventuality of it is not in my hands, so if I live 6 months or to be 100, what will be will be, and I have no time or inclination to worry about dying, or pretend that I am vulnerable to fit in with this concept of “normality”. I also feel lucky to feel how I feel, as I am well aware that this is not the norm.
Joyce x

Breast care support I feel some people are missing the point.

It is only in THIS forum we are labelling ourselves one thing or another to fit the discussion. Of course out there in the “real world”, we do not go about with badges stuck to our chest, screaming “I am stronger than you!”
This is something people just “pick up” from other people during difficult times, whatever they may be. In every situation there is always going to be one stronger than the other, that 's how life works.
I also know that someone telling you to pull yourself together is totally useless, and cruel.

Tell me where do you get your “feel good factor” from? How do you know it’s not from someone who is lucky enough to have a strength they can’t explain, but refuse to apologise for.

Breast care support I feel some people are missing the point.

It is only in THIS forum we are labelling ourselves one thing or another to fit the discussion. Of course out there in the “real world”, we do not go about with badges stuck to our chest, screaming “I am stronger than you!”
This is something people just “pick up” from other people during difficult times, whatever they may be. In every situation there is always going to be one stronger than the other, that 's how life works.
I also know that someone telling you to pull yourself together is totally useless, and cruel.

Tell me where do you get your “feel good factor” from? How do you know it’s not from someone who is lucky enough to have a strength they can’t explain, but refuse to apologise for.

Dear Joyce,
I can’t speak for other people, but I get whatever strength I have from my own inner reserves, from family and friends, from my consultant and from sharing experiences with other people who have had cancer. Receiving support from anyone who perceives themselves as stronger than me would not work for me. Sometimes other people deal with their cancer in a way that I would not feel comfortable with for myself, but if it works for them, fine. Just don’t impose it on me is all I ask.

Also, time helps. Being given and taking the time to think through feelings about cancer for as long as you need.

I found I needed lots of time to confront my feelings, hence my comments. It is not for me to comment on whether you or anyone else has confronted their feelings, so I apologise if I have unintentionally caused offence.

It has never crossed my mind to think about whether I am stronger or weaker than other cancer patients at a particular time. It goes back to JaneRA’s point that our feelings of strength and vulnerability vary over time.

You seem to feel uncomfortable with the discussion about people labelling themselves, but you raised the subject by talking about the advantage of being strong enabling you to help the more vulnerable. I don’t think those of us who have a different opinion have missed the point. We just don’t want to be patronised by those who appoint themselves as stronger than us.

reply Dear Daphne
As it seems that my point of view regarding “strength” is acting like a Red Rag to a Bull, so to speak. I am withdrawing from this discussion. If vulnerability is the price for joining this forum, I have no place here.
I would however make one final observation regarding your statement:-
“I get whatever strength I have from my own inner reserves, from family and friends, from my consultant and from sharing experiences with other people who have had cancer.”

and ask you, is it remotely possible that one of these people could possibly be be “stronger” than you, and they just forgot to tell you? :o)))

We all have strengths and weaknesses, even me…bet that shocks you!? My strength is pigheadness, a lust for life, and a refusal to give it up, and let me tell you my fight was LONG and HARD, and a wake up call that life doesn’t stand still and wait for you to catch up. You have to go out and “get it”. To me fear, anger whatever has no place in my life…I don’t have time for it. If I make time, I may have no time for the important things. I count myself very very lucky to have such a strength, and accordingly I like to share it … usually it’s by people sensing your inner strength, not by me telling them I am superior…which I most certainly am not. We are all equal in God’s eyes, just with different strengths and weaknesses.
Bye x

Joyce, in answer to your question:

“is it remotely possible that one of these people could possibly be be “stronger” than you, and they just forgot to tell you?”

yes, quite possibly. However, on reflection, it is not the relative strengths and weaknesses of these people and me that is important to any of us, it is that fact that none of them has tried to jolly me along and tell me to think positive when I’ve felt vulnerable. Not everyone may agree, but I think that is patronising behaviour.

I’m not at all shocked to hear that you have strengths and weaknesses. It’s just that your earlier posts seemed to imply that a lust for life and a refusal to give up can’t co-exist with feelings of vulnerability and fear in a person.

I think what you are saying is that these feelings don’t co-exist in you and this enables you to use this quality to help other people. I believe that they do co-exist in many breast cancer patients, so what has worked for you, may not work for them.

Thank you for this interesting discussion.

Daphne

new to all this… I am very new to breast cancer in that I was only diagnosed on 2nd March. I knew something was up when someone I hadnt seen before (who turned out to the BCN) led me into a different doorway and sat me in the psuedo-lounge with a box of hankies on the table… Both my BCN and consultant said they were shocked I had cancer as they hadn’t expected it… I have a history of benign lumps and cysts… not half as shocked as me though!

At first I didnt take to my BCN who, interestingly, is also a Macmillan nurse. She seemed a bit hard to me but then softened up a bit - as I was very worried about how my mum was taking the news, she was very helpful to her - it’s mad I know but to be honest Ive been more worried about other people close to me than myself. I hate it when they start crying and as I have a friend with leukaemia whose daughter also has a brain tumour, I know how helpless it can feel being told such news.

What worries me in a way is that so far (and I know that compared to everybody else I have only just started on what has been a very long and hard journey for some of you), I feel very strong and positive. I have hardly cried and wonder if I am in some way abnormal. Whilst I hope I always feel like this, I am also worried that Im in some kind of denial and everything is going to come crashing down.

At my second meeting with my BCN she was absolutely fantastic, informative and helpful, making sure that she told me only things I wanted to know and not things that I wasnt ready for yet. We discussed reconstruction and again I found her knowledge and experience to be wonderful, I decided against reconstruction at this point and not once have I regretted this… this is despite the fact that usually I cant decide what to have for breakfast! I just hope that she turns out to be as good as some of the best BCNs described in this thread as I think I might need her… Surely the answer is not whether we need more BCNs but making sure that all of them are the best that they can possibly be through better training etc.

Sorry for this very long thread but I found the recent discussion about inner strength has really made me think about how I am going to cope with this all this…
Pauline

It isn’t abnormal to feel strong and positive and not cry. If that’s the sort of person you are, it’s not denial, but I think you are right to bear in mind that these are very early days for you and your feelings may change. If they do, that’s perfectly normal. I think it is easy to underestimate the psychological and emotional effect of having breast cancer. I did.

I hope you do continue to feel strong and positive, but there are people you can talk things through with, regardless of how strong or otherwise you feel - BCNs, support groups, the Breast Cancer Care Helpline.

Thanks for that Daphne, its not usually the way I am… but then again Ive never been diagnosed with cancer before, when my friend and her daughter were diagnosed I was upset for weeks and cried a lot. That’s why Im a bit worried about it, however, like you say, there are plenty of people to talk to if I need them.

What an interesting thread this is. My experience of BCN’s (and I am at one of the best hospitals I believe - the Royal Marsden). My first contact with one was on my second dx of bc. I could not believe how useless and patronising she was. Like Joyce I am a very strong person and throughout the 17 years of bc and several recurrences and ops & secondaries I too have taken it in my stride. The BCN told me I was in shock and it would hit me eventually - I am still waiting!

I came late to forums like this one and the other one - just over a year now. One thing they have really taught me is that we all have different coping mechanisms and different life circumstances and these seem to be as varied as our bc diagnoses. I always thought that others reacted to and coped with their disease as I did and the forums have been a revelation which have led to a much deeper understanding of women living with this wretched disease. I believe they have made me a more caring person.

The Marsden now have 2 secondary breast care nurses - have I seen or heard anything of them. NO! Do I need them - NO! But i believe that others do and so I am starting to ask awkward questions.

Dawnhc

hi Dawn Have to say at the Princess Royal in Telford both the ‘top’ breast nurses have been fantastic, i was only saying tonight that last year i stood in mud to my knees soaking wet bandana on…looking like uncle fester. feeling very poorly through chemo…during race for life waiting for my friends to pass me by when someone in a kaggool came over while passing and gave me a big hug, it was my 65 year old BCN. soaking wet doing her race for life with them all…at the hosp she has always been fantastic and when she was with me for my second dx gave me a stern telling off for not phoning her before I did…, but when i did she got me to see the consultant the day after, at his clinic and made sure i went in first!!! and visited me on the ward just after mast and then on my discharge day to give me a number of ‘cumfie’s’…and she gives a little cuddle and was there when i broke down crying and also gave hubby a big hug…she has had to retire on ‘health’ grounds not even age!! and the new on who is also an older lady is lovely too!!

I have read the posts and my goodness I have been blessed!!

the other nurses have been wonderful too and on the surgery ward 12/14 they are fantastic…even the male nurses made you feel loveley…and dignified…

I didn’t know there was an opinion poll on this …going on…but that is my own experience…