Although I have encountered some great people in the NHS since my initial diagnosis three years ago, there have also been some duds. Just thought it might be fun to offer some “top tips” to and medical staff who might be passing through on “dealing compassionately with those annoying cancer patients”. Here’s my offering, based on real life experience, with no offence meant to those many staff who are already lovely and keep us going.
Don’t ask - “What are you here for?”
Try not to say “You’re a bit young to have that aren’t you”
When you have an appointment with a patient at 8.30am, try to arrive in the hospital before 8.35am
4 Performing a heart scan on a mastectomy patient is not the best time to discuss a night out with a male chum
Saying “that’s the second patient I made cry in their pre chemo meeting in two days” is not advisable when the first one is sitting in front of you!
Love to hear everybody else’s suggestions - bet you all have some good ones to share!
Most people I’ve met have been great since I was dx on 28 June this year. However, I had an appt last week at plastic surgery outpatients that I found really upsetting, hence no 1 on my list:
For Plastics outpatients staff: remember that we’re dealing with a life threatening illness not just a boob job (try looking at our notes in advance) and be sensitive.
Don’t forget to introduce yourself, especially when you’re asking us to take our clothes off.
Don’t expect us to wait with our clothes off in a flimsy hospital gown before we meet a doctor. OK their time is precious, but think about our dignity! Perhaps they could take the time to introduce themselves first…
Don’t stand up throughout the appointment when we’re sitting down.
“Does she take sugar?” Don’t discuss us with our OH/supporter as if we weren’t in the room.
Do maintain eye contact with us.
Don’t dismiss our research and questions - we do know how to use the Internet to find quality information.
If you don’t know the answer to one of our questions, offer to find it out and report back.
When receiving a BC patient for an ultrasound on their good side i.e. what’s left, please check the notes first before asking “and which side is it we’re doing”, may well result in a severe smack in the mouth
“You’ll just feel a little scratch” - it’s a complete lie, it is never just a little scratch and the more you have the worse it gets so beware of all mediical staff with long noses.
If your department has refused a mammogram to someone with a family history, a someone who was diagnosed 4 months later, don’t turn up to any appointment with said patient. And certainly don’t invite said parient for a “routine mammogram” the following year or she might be tempted to give your brain a mammogram type examination.
Last but not least, not by a long way, how about changing rooms for BC patients undergoing radiotherapy? I think that’s one that BCC could champion on our behalf. Moderator!!!
I’d like for them to not assume that everybody is going to fit in the open fronted “one size fits all” gowns without one or both boobs hanging out. (and not make us sit wearing them in a public area trying to clutch the side bits together).
Hi, think i have been very fortunate, my surgeon is so polite, and a really kind caring person, my onc, well at first i wasn’t sure, but ditto as with surgeon, my bc nurse is great, the only fault i had was being in a post op ward with some nursing staff who knew or cared very little about bc, but that was just bad luck i suppose, the nurses who were good were great .
i had exactly the same experience as alisoncamera on the ward i was on. as on my 5th day after complicatins on the ward i was climbing the walls wanting to go home through lack ofsleep andterrible food.
Hospital food really does not entice you to stay in hospital! mind you, had a doubly incontinent old lady next to me, it was always worse at mealtimes!
Hi all please dont think I am being smug or anything like that I have had wonderful treatment. Considering I was only in this little town here in Scotland 1 week I was registered with a new doctor and diagnosed and had my masectomy all done in 4 weeks. Then the week after I was given all my treatment plan I was so pleased with all the staff and especially my surgeon who was a complete gentleman I telephoned his secretary a few days after I came home and I asked her what did he drink and she said he drinks Tequela. So off I went to Asda and guess what they had a silver Tequila or a gold Tequala I thought god which one as I didnt know the difference so I thought sod it I will get the gold as he was golden to me. So I wrapped it up with a nice thank you card and I handed it in to his Secretary. One week later I got a lovely letter back from him thanking me for my generous gift . So I was glad I did what I did. Anyway I would like to say to some of you ladies after reading quiet a lot of posts on here I cant understand why a lot of you ladies are having to pay for wigs thermometers bandanas as I went and picked my wig in a big shop in Edinburgh which my hospital recomended and my BC nurse booked the appointment for me. I picked a wig at £175 and walked out the shop with it that day and paid nothing. I was also given thermometer and bandanas at the hospital so I cant understand why some BC patients are having to pay as it just dont seem right to me. Anyway I still have my lovely wig in great condition and mine has a proper scalp on it it is a high lighted blonde bob not to short so if any one would like it I would gladly send it to them.Let me know as its a shame for it just to lie here. Love to you all Linda x
Only one complaint - when having scan nurse wanted to inject dye into arm where the lymph nodes have been removed. I told her to use other arm - her reply - it doesn’t make any difference with all lymph nodes missing - IT DOES!!!
Linda
just pointing out that in Scotland you have a completely different system for paying NHS charges. I believe most people in England have to pay for everything that isn’t actually provided in the hospital - including anti sickness medication, antibiotics etc prescribed by the GP. It isn’t a “national” health service - it differs widely depending what side of the borders you live.
Oh, and I have to travel 30 miles to a strange town - four different buses plus a walk that i am incapable of doing, if i want a wig - and then pay for it. As my income is very very limited i will just put up with whatever i can knit.
This is our government idea of equality
hi Alison
nope - just returned from my pre chemo session where i was told that i’d have to travel to a town way away and that they “thought” they had some reasonably priced wigs - no way am i going to even investigate as the fares and journey alone would be out the question.
hugs
ruth
I have had a very positive experience apart from 1 thing…
Radiographers- when handed a chest x-ray form that says ‘staging for BC’ do not ask the patient if they are having a good day! This happened to me and my response was ‘as good as it gets considering I’ve just been told I’m probably having a boob removed’.
Yes, it was a he and I don’t think he will do it again as he kept apologising! I must say that my consultant and breast nurse are male and I can’t fault them or praise them enough.
After being treated with care, respect and compassion by the bc team, I was not that impressed with the radiographer. She was not rude or anything, but just a bit brisker than I’d have liked. I would just ask radiographers to make themselves aware of the patient’s situation and remember to be kind and also remember that most of us do not know what is happening, are frightened of great big machines, and are not used to being asked to take all our clothes off in a little side room and pop on a gown. I know hospital staff deal with these things every day, but patients don’t.
Kelyn, what did that scan nurse mean? You’re not supposed to have any broken skin etc when lymph nodes have been messed with, are you?
Emma - the scan nurse just wasn’t clued up on Lymphadema. She was insisting to use my ‘bad arm’ as it was the one closest to her work station. I refused point blank and informed her that she either used the other arm or I was going to leave. she used the other arm but pointed out several times that it didn’t matter if she used my ‘bad arm’ - i told my breast care nurse and the lymphodema nurse and they both said that i had done the right thing to refuse her to use it - both said that sometimes the bad arm will have to be used but needs to be avoided whenever possible as it could cause lymphodema
I am much further down the line than you girls but thought that you might try the locat cancer charities in your area nearly all hospitals have them not just for BC but we have a very good one and they offer a place to chat have coffee get wigs bandanas completmentary therapy (free) The travelling thing can be awful in our area they help out espcially for radiotherapy which is daily and if you are on low wages you should try to get some help… The breast care nurse can sometimes get all this info, in fact any orf your worries should be answered by her and if they are not medical she should find out for you… it’s their job…
Also the tele help line here may be able to help you please don’t get yourself down in the dumps … things are bad enough there are some wonderful people out there who are willing to help you maybe someone you meet on your hosp visits will be able to give you lift to have mornning out coffe and wig hunting it is really fun to take a friend along even if she insists on saying you look wonderful in some awful grey mop!!!
I live in Cornwall, treated in Plymouth, Devon and I got a £125 voucher to take to a hairdresser/wig salon. The wig had to be ordered, but when it came in about 10 days, one of the stylists cut it to suit my face, and there was no charge. I guess there is still a post code lottery in England which is most unfair. Cancer is cancer, and there should be a level playing field for all of us, including new drugs.
I didn’t have to pay for any anti-sickness drugs or antibiotics as they were given foc from the hospital pharmacy when I had chemo. I didn’t see my GP during the gruelling 11 months of surgeries,chemo and radiotherapy as I figured that he doesn’t know a whole lot about bc, and I got incredibly good care from my bc nurse and bc surgeon. Luckily I was treated at a breast care centre of excellence, post op ward was just for bc and all the nurses had had specialist counselling training. It was much better than going private, as there was always someone to talk to, and share problems with. I have a friend in London who had a mastectomy and recon some 12 yrs ago privately, and she didn’t even get a bc nurse. She doesn’t know the first thing about bc and has no idea what type she has. Perhaps ignorance is bliss. To me, knowledge is power.
As for radiography - they had separate cubicles to undress in, and we were given our own gown to keep for the duration of treatment, so we could wash them. They fitted on the shoulders with velcro and we kept our trousers on. My radiographers were exceedingly tactful - all they had to do was unzip the velcro to expose the breast to be treated and I felt I was treated with dignity. Oh, that you all had been. As I live a one and half hour’s drive (and ferry) from the hospital, I was offered free volunteer car service for the 5 and a half weeks of radiotherapy. This was provided by the Cornwall and Devon ambulance service. It often took 6 hours door to door, as we had to pick up other patients, but it was a life saver.
Kelyn - I am horrified that a chemo nurse did not know that the arm with axillary resection should not be used for infusions, or indeed taking blood, injections etc. Even my local GP’s nurse, where I have monthly blood tests and B12 injections, knows this. I feel very fortunate to have had the very best treatment.