Strangely, my tums been a lot more settled the last few days, Thank You darlin'.
But I've had my scan results. Tha liver ones are showing cysts, plus raised levels of certains chemicals so I'll take the report with me for my Ultrasound practitioner, later this morning.
I'll be back some time later, just have had a lot on lately.
Until then - keep on kicking at this disease
Happy New Year!! Thanks Delly,
Theres a saying which says why keep banging your head against brick wall looking for a door -a wall is a wall!!. This is the case with the BC nurses at my hospital -the rest of the professionals have been great 😊😊 so can cope without!
Am doing much better now thanks -things seem to be settling down. Hip hip hoorah!!😊😊 Had a lovely Christmas -was so good to be able to eat this year!! So now back to the proper food plan as have put a bit of weight on over the hols. Never mind it was worth it! Time to get things back in hand though!!
How are you?
I had TWO of the most brilliant, helpful, friendly and supportive BCN's EVER. Imelda and Claire at Oldham and North Manchester General - absolute gems. Sounds like they need to give some lessons to all your lots.
HAPPY NEW YEAR GIRLS. hope it's a good one that gets better and better.
Keep kicking this gawd awful disease in thye BUTT - HEY
Lotsa love to you ALL
Hi WAVEY - Awwww, flippin 'eck. I can't believe what you girls. They reeeally need to know what you're saying. You need to address an ANONYMOUS LETTER to them or let MEEEEE do it.!!!!!
How are you OTHERwise WAVEY ??
IT's SOOOOO good to see/hear you flower.
Hope your query got answered Jackie.
Am yet to find a good reason why I'd ring my so called designated BC nurse -never can help me when I do have a query. So any issues that have cropped up have found it better to tackle directly myself.
Last time I rang my designated BC nurse was on hol so another of the team 'kindly' rang me back....wish they hadn't as they then proceeded to tell me off, summing things up nicely by saying we can't help you and slamming the phone down on me. I hardly had a chance to say a word!! Frankly I find them a waste of time, the emotional verbal bullying unacceptable and will not be contacting that team anymore -ever!! Rather go through my GP thanks! Far more helpful, caring and doesnt shout, putting phone down on me!
Have smiled at the wonder of those of you who have actually got phone calls offering after care follow ups! Wow!! If my BC nurse team rang by some miracle I'd run for the hills!!
So Jackie maybe not such a great loss?
I am complaining that this time round I have not been given a designated breast care nurse. I have previously had a breast care nurse when undergoing surgery. She was excellent, no complaints. But today I am in the middle of a course of radiotherapy - at a different hospital - and had several concerns and phoned the hospital, asked for a bcn (linked to radiotherapy) at this hospital. I was put through to a radioographer who brushed aside my request for a bcn and said she could answer my questions, which she did. In fact I still have one big query that I think she failed to answer. I will ask again.
Of course you do NOT want or need extra probs when having to cope/deal with what you are.
It's very sad that NHS services are so very pushed, certain areas more than others.
I hope you have better luck with your latest BCN cos it can make a big difference.
Definitely a mixed bag in my humble opinion!!
My first was very prickly & heavily into minimising, patronising too. She was keen to stress to me how my BC was far removed from anything serious & was"nothing"....perhaps she'd not familiarised herself with my case notes...as I was diagnosed with stage 3a, grade 3, three lymph nodes involved, Her2 positive.....surely that qualifies as serious....sigh. Though I was very ill during chemo & admitted several times into hospital she continued to insist it was nothing, the oncologist thought otherwise & rushed to my bed. Hey ho. I got rid of her after 6 months of this nonsense as I dreaded any contact from her as she distressed me so much.
My current BC is very overworked but is sweet, kind & non judgemental. I see her rarely but at least I know she won't bite my head off!!
So don't put up with a bcn if you feel uncomfortable -you don't need the added stress!!
Well I seemed to have been very, very lucky. Had brilliant BCN's at Oldham. My 1st, bless her, was so incredibly patient and supportive, helped pick me up of the emotional cold floor when I was first diagnosed cos I was in bits and ALL of them fantastic throughout both my mastectomies.
Was sadly a different story when I moved recently so was attending a different hospital and a different surgeon regarding reconstruction. Then after being appointed to another surgeon, I haven't actually seen one since - yet
I would find your experience unacceptable, and would ask to see another BCN. Having someone in the hospital who is an effective go-between has been very helpful to me, and others too, I am sure.
Yes, they are all under far more pressure than is healthy for them or the organisation, but it is more important for us to look after ourselves. It goes against the grain to be 'selfish', but if it isn't important to get what we need at a time like this, when is it? To borrow a phrase 'You're worth it'!
This is an old thread I know but one I would like to be part of, I took an instant dislike to the woman who said she would be my ban . All i got was how good she was in charge over two hospitals well done to her getting the job. But she has no empathy friendless concern etc in Her little finger. She gives messages to jjunior nurses to ring me about appointments when I speak to the person she has the dates and times all wrong. Then there is what would you like to be known by Val I replied that is my name but she insists on calling me lovely darling sweet pet I find this do condescending. Perhaps it's an age think I am 71 she must be mid 50th. We just do not gel I do not know why. I think she is probably very good at one of her jos buti is very stressed because of staff shortages etc ,she tries too hard being the oncologist and consultant which she is not. It was her who examined me on the first day at the hospital and told me I definitely had cancer before any biopsies. Surely I should have been told this b the .consultabt, rant over. Looks like I am struck with with here.
It's good that we can come here and share, I do feel very fortunate having access to the internet with so much information and forums. I also find it's easier to throw things out in writing at my leisure from my own living room, than try and talk in clinic when everyone is stressed and pressurised and it's all so public. If anything is bothering me, that's not the best situation to get it out. I think one reason our Macmillan lymphoedema nurses are more approachable than the BCN team is they have longer timeslots and it's held in a little sideroom in a GP surgery not the huge hospital. They also come to our quarterly support group so we can meet them out of hours and have a laugh together.
GrannyScouse, you made me laugh too, I'm finding the doctors look young now, even the consultants! And the policemen.... isn't that a sign of - er, needing glasses, or something?! LOL
Thanks for your contributions here everyone.
I have no complaints as "my" BCN doesn't exist. I've seen one in clinic. Younger than my granddaughter - well, almost. She's said, "Hi, do you wish to discuss anything?" "Erm, no." "Well, here's my phone number if you wish to discuss anything."
Do I wish to discuss anything?
I've lived with this for 6 years or more without the help of a BCN because nobody's been available. I can't see me discussing this with someone who's so young. What would I discuss with her? Can she honestly talk about all of this with someone who's old enough to be her Nanna? If she can, perhaps she'd like to PM me.
Good luck to us all.
Lulu, you are lucky to have such a large team! It's great that your senior inspired you to switch areas and care for others with BC, that must be hard on you at times.
My BCN team is quite small (3, i think?) I met them a lot initially: at diagnostic clinic (you instantly know the news is bad when there are three additional new faces in the room!), pre and post op clinics, drain-pulling and for prosthetic-fitting (that was gross, and I never went back) they were also the obstacle or filter that made it hard to get into treatment for lymphoedema. I don't have dog-ears either, it's just normal fat. Normal, unilateral fat?? RIIIIGHT... Since getting past that, I have been nursed by the LE girls who are macmillan nurses, there are three or four of them covering a large patch so I don't always see the same one and they sometimes have a trainee that I never see again. They are great and there is nothing I can't ask them. If one solution doesn't work we try something else, we can sort this lymphoedema thing together. And all the other stuff.
I did have a clash many years ago with my then health-visitor and I insisted on a swap, it's an important relationship and you need to get one you can work with. I traded a childless single twinset-and-pearls lady, and I mean Lady, who lived by her watch (yes in the nineties, not the fifties!!) swapped her for a guy with young grandchildren, who had a sound grasp of reality, moderation and the art of the possible, and we got on brilliant after that; everyone slept, albeit at strange times, nobody starved even if some of the meals were unorthodox combinations... parents survived and baby thrived! So much more need to be flexible where cancer is concerned. So my moral is, everyone doesn't get on with everyone and if you need to swap, go for it.
When first diagnosed I had a bcn who I saw maybe 3 times, she always seemed near a box of tissues lol which I never used, she was very factual and helpful andd I think did her best to answer the questions I had. But you either gel with someone or you don't.
My BCN now, knows I rarely need tissues, she's very proactive in the business end of bc, form filling for DLA etc, very efficiant and you know if she says she will do it, it gets done. We have gradually formed a good relationship and never fails to turn up if shes available when I am in the chemo unit or she comes to visit if she thinks she needs to review things.
I don't really confide in her but do tell her if something is bothering me and she is great at the liason between the consultant.
I have a chemo nurse who is wonderful and fits in all the bits that are missing with my BCN ( no fault on her part)They both have a way of second guessing what my needs are, so between the 2 of them I feel very reassured and looked after.
I think it often is a personality thing, as in life you don't always feel an instant bond with people. It seems the service though has not quite reached everyone which is such a shame as they do such a wonderful service, I guess perhaps for some that they are somewhat overburdened by the work load and have to prioritise, though thats no help to those who have had not such a great experience.
When I was first diagnosed with BC in 2009 at the Princess Royal in Haywards Heath, I had a fantastic Breast care nurse, who was more like a very good chum than a nurse. Even when I was diagnosed with secondaries in 2010, and decided to change hospitals she fully supported me, and has kept in touch ever since. At my new Hospital, there are two BC nurses, one is very nice and helpful, but the other (surprisingly a Macmillan nurse), I find quite prickly and difficult to get on with. I wouldn't complain about her though, because it could just be a clash of personalities, and the fact that I have always dealt with her under difficult circumstances. The other thing is, I think sometimes a bit of empathy is called for. Having trained as a nurse myself a while back, I know that it can be a fairly stressful, and at times very upsetting job - and were all human. In any case I know that if I needed help/support, I could always go to the other two nurses, who I know would help.
ttm - just curious - why should 'younger' women's feelings/concerns be different? Surely breast cancer is breast cancer whatever your age.
lulu - i think your suggestion of there being bcn's who deal with younger women is a good idea. i suppose it is difficult as most patients i presume are a bit older. but i do think they should consider younger womens feelings/concerns maybe different to older ladies and may need different/more emotional help/support etc.
Another current thread about BCNs here:
I thought it was just me that was unlucky we have 3 I found 2 of them very patronising and didn't have a clue how to cope with me I think they only have one style and that's "there, there just cry and let it all out" and "you know where we are if you need us" they were useless! Then third one came along who was so much better but her workload was huge because she is so good. I think you should be able to evaluate the service you receive because obviously some by nurses aren't giving us the correct support when we need it the most
Sadie we also have dedicated mets BCNs.... We all are specialised I work as a genetic BCN and a screening BCN and there are two more screening ones, there are 5 symptomatic/ general BCNs and two mets BCNs.
The one of the secondaries nurses was my original BCN but she felt there wasn't enough support or patients with mets so set up the service for mets and her colleague joined her... I was very sad she wasn't my BCN any more especially when I got allocated the one who I didn get on with.... But she was te reason I went into breast care nursing cos she was so flipping fab and if I'm half as good as she is I'll be more than happy.
Just wish there was a service like that all over as secondaries patients have such specialised issues, personally think there should be a young womens BCN too as I think they are so used to dealing with older women they don't always take younger women's issues into account unfortunately.
If you are not happy i would ask to change .Wish i had i rang mine as i thought i could feel another lump and she told me that it wouldn't do to be paranoid or my surgeon would just think i was a panicker and wouldn't see me.She said she would do her best and he did agree to see me but i felt so low when i went to the appointment .I thought he was going to be cross with me !!!
She has only rang me once in 7 months the rads team have rang me up more to see how I'm doing than my breast care nurse has xx
Hi Sadie - nice to see you!
Yep in my experience, stage IV doesn't come onto their radar. (Except they've got a fab BCN at the Marsden who just does secondary BC)
hello, yes I changed mine - well to be honest I demanded to see just one consitently , in the first 4 weeks of my diagnosis I saw 5 different ones which drove me crazy. Poor lass, the one I picked, she was well anxious about me after that as I had made such a fuss - but I don't really need her that often so I think she is surviving!
I think you have a right to someone who you can talk to if at all possible - sadly the team in my area has been halved since the cuts started to bite so its less possible to shift from one to another I think.
all the best nicola
I have been very lucky with all my bcn There are two on the chemo side who work very well together. Either are dependable. Last week one of them re scheduled appts for me and checked up to ensure everything was ok. The surgery bcn was awesome too. Phoning me post surgery to see how I was several times. The pre surgery chat was very good too and she answered all my questions. They are all down to earth and approachable.
I feel very fortunate.
I will admit, when I was first diagnosed I found mine a little irritating. I have quite a stubborn personality and I wasn't falling apart so I did sometimes find her a tad patronising. However, she realised I didn't need the same level of support as some of the other ladies, so would only contact me if necessary (i.e. if there had been an issue at an appointment), or I would contact her if I needed to. As I was technically misdiagnosed at the beginning she also came to my home to go through a few things (the surgeon was concerned about whether I trusted him or not). I eventually formed a good relationship with her and I don't know what I would have done without her assistance before my discharge prior to Christmas; I was very grateful for her help with getting an earlier appointment and beyond remission I know she is still there if I need her. She is very dedicated to her role and she raises a lot of money for BC stuff.
Unfortunately I can't say the same for her colleagues. There was one who retired after I was diagnosed, but she was with me when I was admitted for surgery as my own BC nurse was on holiday that week. This woman was the senior BC nurse and kept saying things like "this is a crucial point in your treatment" which I found made me quite nervous. She was also a bit hectoring in her tone. There is one other I don't like dealing with as she is very rude. Other ladies I've met who were assigned to her just could not get a rapport going because of this, she made them feel as if they were a nuisance. It's the same with going for counselling - you have to be able to get on with the person you are seeing to be comfortable spilling all your problems out to them.
Thank you soo much for posting and your comments.
I am glad for you ladies who have had a brilliant BCN.
But i find it quite horrendous that a few people have commented that they have had negative experiences with their BCN.
I phoned and spoke to another BCN and she was quite helpful.
And if you are unhappy with your BCN, it is important that us as ladies do change our BCN, and get the care, help and support we deserve. At this time in our lives, we do need help and support and should feel listened to and Supported. We have to look after ourselves now ladies!!!!!
The first was a disaster.I changed to another who is a bit better but hardly someone you could rely on or trust.I did have a lovely nurse when my surgery results came through but she was standing in for No 2.Am due to start Chemo next week and now feel there will be no support whatsoever. No 2 nurse did ring about two days ago ostensibly to see how I was but she didn't seem bothered one way or the other. The consultants I've encountered have been superb-humane and communicative, but the nursing care has been hit and miss.
Am now reliant on these forums and the helplines for information . Would particularly have liked some support and information re hair loss but assume it won't happen. Sorry for negativity but in my case the BCN have been worse than useless
Not complaining, but explaining: I'm treated at a "centre of excellence" 😉 where the oncologists come and go, I've lost count of how many I've seen during my 5+ years of treatment. So the BCN (or Clinical Nurse Specialist to use the official name) is really important for continuity.
During my time, there have been three (one was covering a maternity leave) and all have been very good indeed. That said, I think I relate slightly better to the one who is nearer my own age. When a BCN is young enough to be one's daughter, it makes me wonder where the years went 🙂
Reading this thread makes me really appreciate the situation I've had with BCNs. The set here means that I've been to three diffenret hospitals, each of which has its own BCNs, so at diffenret times I've had different nurses.
Nurse D is my favourite, and the first one I met... calm, organised, quiet and quite firm. That suits me. I am glad it is she who is my long term 'open access' nurse.
Nurse L is bubbly, full of information but 'never there'... she overloaded me with info at my pre-chemo appointment and I've never seen her since. A couple of time I left messages for her which took up to a week to be answered. She's great when you do get hold of her, but I found it frustrating and worrying at times.
Nurse C was was my surgery nurse, young, lively and everso down-to-earth. I knew from Day 1 we would get on and I also knew I would 'lose' her after my surgery. She could make me laugh, pulled a drain out without me noticing and was very matter of fact where appropriate.
So, I am really lucky, I am left with a brill BCN with whom I get on great. Not everyone is so lucky. At each of the three hospitals I was at there are two or three BCNs and some people do ask to change... some of the ladies I met certainly changed from L.
Hope you find someome you can relate to Dolph, it is so important to feel you are listened to, respected and supported.
my trust has two hospitals... one where the breast clinic is (and I knew the BCnurses there) and the other where the chemo happens, and I didn't know the BCN there.... I asked who I should relate to once I started chemo, and on both sites they said "whoever you want to. whatever is best for you is fine".... so... go for it. You need to feel you have someone you can phone when you're down/anxious/grotty that you can feel safe with and rely on.
Hi I put up with my bcn for far too long before changing. My new bcn is much better suited to me. People can just clash. I just asked to see the new one and have done ever since. I occasionally speak to my old one on the phone and she is fine. I think she is too busy to worry about me and why i swapped.
I've had issues with my whole team and have actually changed hospitals.
Confidence in people in the team is such an important thing. As Lulu says, it shouldn't be an issue to change but frankly if people get miffed about you wanting to change then I would say, "Tough"! It's too important to just take what you're given. Now's the time to make sure you get what you need.
You wouldn't take your car to a mechanic you didn't like or trust...
I didn't get on with mine... I flet she didn't listen to me so I asked one of the other nurses if she would be my BCN and she said yes and it was all fine... I'm actually a BCN and work with them all so thought it would be a problem but it wasn't... We are all different and different people suit different styles or don't gel with one person so don't worry about it... It should be fairly straightforward.
I have had some issues. if you would like me to PM i willdiscuss.I would rather not converse on forum
Would like to know if anyone has changed their Breast Care Nurse?
Or whether or not anyone has quite bonded with their Breast Care nurse.
How do you go out about changing them, if you are unhappy with them.