I have been asked by serendipity to post this in here
Kind regards Sam
Following my latest visit to the breast unit I am feeling so very low.
Saw the prosthesis lady who incidentally, is the most compassionate person I have encountered on this ‘journey’. She is determined to try and find a solution to the difficulties surrounding provision of something suitable. She was kind and understanding of the problems I am encountering in this area.
However, the visit reminded me of many other less happy contacts with unsupportive medical staff, when discussing treatment options and ongoing problems due to surgery.
My consultant was overtly condescending at my last appointment and my assigned breastcare nurse has never been available for support and advice when I have needed it.
I feel like I have been cast adrift by the medical staff and expected to get on with it without asking questions or more importantly,getting answers to them.
Sorry if I sound despondent - guess being treated in a humane fashion by this kind lady just reminded me that I am destined to always feel low about the dealings I have had with the medical staff.
This probably doesn’t make sense to those who have had better experiences - maybe I am on my own in this ( then again. I hope others haven’t come across this ).
Thankyou for reading as I feel tremendously isolated with no-one around who is able or willing to listen.
Sorry you are feeling so low and isolated, its a very lonely journey sometimes. I have just finished writing on another thread, talking about the lack of various things at the hospitals especially an understanding of the emotional impact we all fight on a daily basis, but it hasn’t come up yet. I took so long to find the right words I think I was timed out. So I am attempting to be a bit quicker on this one and hopefully a bit more successful!
I am a health professional myself and I can see the argument from the medical side, they cannot give everyone all they need, at the time they need it, all of the time. So I try and be understanding when I go for my clinic appointments, and I still come out feeling angry and frustrated, wanting to shout, ‘you don’t understand’. and desparately not wanting to go back. But I do and things are getting a little easier.
It does help knowing people are feeling the same as you, I hope now you have found this site you will feel a little less isolated.
All the best
H
Serendipity
I too feel isolated and left alone by the medical staff. I had superb contacts and follow up from dx from the hospital but once my resutls were through from surgery (the prognosis was good and I didn’t need chemo for which I’m thankful) my bcn said I have a good prognosis but there are others who have a worse prognosis than me. Basically I feel I’ve been left alone in all this because I have a ‘better’ cancer than most. In my mind cancer is cancer. You dont either have ‘a bit’ or ‘a lot’, we all start from a point of dx.
Claire
Your not sleeping well either are you?
I know exactly what you mean. I too avoided chemo, although I did have a mastectomy and rads. Just because you are in the ‘good’ prognostic end of the spectrum, you are almost made to feel guilty that you are not jumping for joy, and you see puzzled looks on clinicians faces when you say you are suffering emotional problems.
I found counciling has helped, I am one year post op now, but I still have good days and bad. At least with counciling you have someone who says its alright to feel the way you do, I know it isn’t for everyone, but it made me be a little kinder to myself, because you have been through an awful lot. I try not to think about the bigger picture now and deal with ‘bite sized chunks’ of life, if you know what I mean. Well that is how I am coping, I feel I have changed enormously as a person and you almost have to find yourself again, which can be fun because you have to do things you enjoy.
Don’t want to get too deep, psychology was never my strong point. Hope you feel better in the morning.
H
Dear Serendipity.
What an awful time you are having. We feel so vulnerable and fragile, and ,kindness and understanding should be expected from any professional that we encounter. After all it doesn’t cost anything or take much extra time does it? I personally wonder why the world didn’t stop after my dx. and if it has to go on then I need gentleness from others to help me get back on board.
Of course how you deal with this horrible situation depends on how much strength you have at the moment. I think I would do two thimgs. I would keep a diary of events and names listing the rough dealings that you have had with the staff but include the good responses. Sometimes when things are written down it is easier to cope with them than having them running around in your head. Later on when this is over you may want to write and challenge their dealings with you.
I would also contact the Macmillan nurses, they are so kind. They will I am sure have heard about this dismissive treatment from other patients and will help support you through it plus they can answer all your questions.
Hang on in there Serendipity the time will come when you do not need to rely on these excuses for nursing and you will be able to stand stronger.
Margaret
Dear H
I know so well the feeling of not wanting to go back - it was so bad that at one point I waited several weeks before I could face contact about a new problem. I know this was foolish but that’s how upset I was. Fortunately I was seen by a different consultant as it was an urgent appoint. made by a different BC nurse. These medics were fantastic - a pity they are not my usual ones.
Seren x
Dear Claire
Your BC nurse should never have compared your situation with others - as you say a dx of cancer and subsequent treatment affects everyone irrecoverably and our lives are changed forever. It is not a ‘one hat fits all’ disease, just as everyone of us diagnosed is unique. I do wonder how many times patients are made to feel in some way inadequate, because the clinicians dismiss the impact of a cancer dx no matter what the initial prognosis, good or otherwise.
Seren x
Dear Margaret
Thankyou for your suggestion - I hadn’t thought of speaking to the Macmillan nurses to get answers to my questions. I know that others have had similar experiences, so maybe they are aware of the dismissive attitude that is prevalent in some areas.
I think the hardest thing to deal with is the lack of empathy that is shown - yes these people are busy ( sadly ) but they are dealing, as you say, with vulnerable patients who need reassurance that their questions are valid and their fears understandable.
Seren x
I so empathise. The emotional side is not addressed at all. I did ask to change BCN to someone I felt was more sympathetic. But it is no guarantee you will see her in clinic each time. I did not see her last time and when I queried this I was told its me or no one. I had the old one back again.
Also my prognosis is not particularly good but I have still not had anymore contact with BCN.
They seem short staffed and and there are not enough of them to give anymore than the minimum of attention as far as I can see.
Without a supportive family and friends I think it would be very lonely and hard to keep going through chemo etc.
Hopefully in time it will all be looked at again and reviewed.
One of the BC nurses at my clinic is very short with you if you are not her patient and has to deal with you if your own nurse is away. She has no sympathy at all; I had to speak to her in January and she made me feel dreadful.
My own does loads of voluntary stuff for BC fundraising as her mum has had it twice. She never stops going and works very long hours. I didn’t feel I needed to have too much contact with her as I was managing fine, so I was glad for the clinic to use the resources for the more vulnerable ladies they were caring for. However, since I contacted her about counselling she has been marvellous.
I am pleased you have a helpful nurse cherub and hope you obtain the counselling you ask for.
I too prefer that the more vulnerable ladies are cared for when time in clinics is limited, as a result I avoid calling on that valuable time if I can.
However, my bcn does not even return calls left on her answer machine - a patient accepts that a response cannot be immediate but when several messages are left with no response at all, it is very difficult to feel that there is anyone to turn to in a genuine crisis.
Seren x
I agree, that is really bad and actually downright rude as well. I’ve had to leave messaged for mines and it can sometimes take her 4 or 5 days to get back if it’s non urgent, but she always replies.
I’ve had a mixed bag of experiences, too.
Some staff - sometimes the ones you least expect to be - have been wonderful - with so much empathy that it just radiates from them. Most of the rest have been OK, pretty helpful and supportive, what you’d expect. A few have been appalling and it leads me to question whether the NHS is so short of employees with good people skills that it has to let such insensitive staff deal with emotionally vulnerable patients.
When I was told my pathology results after mx it was all good news (clear margins and lymph nodes clear). But the way the consultant told me -patronising or what?. “I have only good news for you - it’s the best you could expect with bc - no rads or chemo, just a tablet to take” I sat in stunned silence having prepared myself for the worst I didn’t know how to react to good news! Since then, no contact from bcn so I identify with your feelings serendipity. To be honest many of my questions along the way have not been answered by the hospital staff and countless times I have spoken to the BreastCancerCare helpline who always seem to show empathy and have time for you.
Misha
Following wle, chemo and rads I found another lump in the affected breast. Having been seen by bcn, surgeon and onc I was told that they could not tell me one way or the other what it was and that I had to wait until the breast had settled down. So I had another appointment for 6 weeks. Needless to say I was a bit distraught as coming to the end of treatment I wanted to pick myself up and begin my life again. I thought that I needed to talk to someone to get things into perspective and perhaps engage some strategies for dealing with this awful wait, so I phoned my bcn. I don’t know what I expected as she has never been very supportive, never answering phone calls etc. but what she said to me made me determined that if this was the cancer returning I would not deal with this woman again. First of all she compared myself to her by saying that she was a person whose cup was always half empty while mine was allways half full (I don’t know how she thinks she knows me so well as we’ve only met 3 times) then she said that if I could not deal withthis situation then I would not be able to deal with other ‘blips’ in my life and that eventualy they would ‘consume’ me. As I am usualy a very well balanced positive sort of person I was amazed when she said she would refer me to a clinical psychologist when I had only needed a 10 minute chat with someone who cared. I have mentioned this to my GP who is writing to her and has said that what I am feeling is perfectly normal and she is referring me to a Mcmillan nurse. If I was not a stronger person I would have been very affected by her non caring attitude, I was made to feel abnormal for feeling stressed about the situation and am now even more stressed after having dealt with her. Lin
Lin - I cannot believe that this woman has the title BCN if this is her attitude and response to you. How totally unforgivable, and it it appalling that she should have spoken to you in such an inappropriate way which showed no empathy whatsoever for your situation. As it happens, I am having just the same situation as you at the moment, but am fortunate enough to have lovely support. Had WLE, chemo, rads - now onto last week of rads but for last three weeks have had a lump beneath the scar which is “highly likely” to be scar tissue, but no one can tell me for sure that it is not a malignancy (I have been posting under the recurrence or new primary section - “an infection or something more serious”). Today I spoke with the consultant at radiotherapy again who measured the lump again, and said that anyway now would not be the time to do anything (very red and sore, and breast swollen). We agreed that she will see me again in four weeks. My 1st annual mammo is in November, and the surgeon suggested we don’t do anything till then. Basically, I have agreed to do nothing for now, but if it plays on my mind too much then will have a biopsy. So Lin, I do understand what you must be feeling. I hope that the McMillan nurse will be supportive to you, or you could phone the BCC nurses, they are very understanding. And please do keep posting here. Your uncertainty and confusion are totally, utterly understandable and normal, and as you say you just need to be able to get through the next few weeks. If it is any comfort at all, the consultant today told me that if they did think that it was a carcinoma then there would be no question of waiting to do investigations. It is very, very unlikely indeed to be anything having just had chemo/rads. That’s what I’m holding on to, and I hope you can as well. Please do let me know how you are getting on - how long until the six weeks is up for you? Love Sarah xx
Hi Sarah - thanks for your support , it is nice to know that I’m not the only one having to go through this. I have also been told that it is highly unlikely that the cancer has returned but they can’t rule it out, so the waiting is really testing my strength. I finished rads 6 weeks ago and the lump was not there during treatment. My next appointment with the surgeon is not 'till 15th July but I have a 2 week break in Scotland and I hope to return to work soon. I know that breast care nurses are overworked and so I have hardly bothered mine, if anything this has made me more determined to get on with my life and not rely on others when it comes to dealing with ‘blips’. Lin xx
It’s a tough time, isn’t it…so near the end of the big three stages of surgery, chemo and radiotherapy, and then being left with this doubt (however tiny) hanging over us. I hope you will have a wonderful time in Scotland, I too have some holiday planned. You know Lin, I have always said that if ever the cancer came back then I would deal with it at the time, but that I am not going to waste time while I am “well” worrying about the “what ifs”. It sounds as though we are in extremely similar situations right now - a tiny question mark hanging over us and not a thing we can do about it at the moment. Well how about we make a little pact about this, let’s go out, enjoy ourselves, give ourselves a pat on the back for having got through the last long months and try very hard to put the “what if’s” in their rightful place. Hold on to the fact that it is most likely BY FAR that we are cancer free. Perhaps we are allowed a little tiny worry now and then, but only a tiny one! Let’s see this through together and see how we get on! Good luck and please keep writing. Sarah x