hi all, gosh talk about insensitivity heres a good one how about when your having rads it helps a lot when its your turn to take your clothes off you dont get a young male who btw didnt look like hed started shaving yet, to just stand there with 2 female colleges talking i sat down and waited i had enough strangers looking at my lets be honest a not very pleasant sight ie what remains of my left boob i had to ask him if he needed to be there…wait for it…he said no he he had finished his shift so i said in that case ill take my top off when he went he got a bit huffy his 2 females pals got huffy said there might be times when ill have to have a male doing the rads i told em if thats the case ill wait till i can get a female........funny tho in all15 of my rads i had females lol..............gotta stick up for our dignity what little we have left so...............if some nursing staff listen to us instead of just seeing a printed name on a sheet of paper itll be a great help…caroleann
Gosh, caroleann, how dare he and his pals get “huffy”?! What were they thinking of? I am so glad you stuck up for yourself.
Quisie, I hope you get some joy, perhaps from the ideas wisden gave you. Honestly, as if we don’t have enough to put up with. Keep trying, my love.
Kelyn - that nurse should be struck off. What if you had not known to refuse to let her inject in that place? It doesn’t bear thinking about. If you have the energy, you really should complain because she could do it to someone else. I don’t wish anyone to lose their job, but if it’s a matter of putting people at risk, then so be it. Thank goodness we try to stay clued up!
I send my love to all of you out there who have been such a comfort to me since my dx almost two weeks ago, especially alison. First op on Friday. Can’t wait! Huh, I won’t be saying that when I get to the hospital!
Love
Emma
xxx
That’s right, Ruth - looking forward to getting on with it, instead of just waiting.
I’ll be thinking of you on Friday too as we both start our journey.
Love
Emma
xxx
I can’t fault any aspect of my treatment but I do take issue with one comment made by my onc. When discussing tamoxifen and having explained that it puts you into an early menopause, he followed up by saying, “But at your age I’m sure that won’t be much of an issue”. I was 47 when I was diagnosed and pre menopausal. I felt hurt and dismayed that he assumed that because of my age I would n’t be bothered. I felt as though he was really saying" It does n’t matter because you’re old anyway". If I’d been even a few years younger, I don’t think he would have made that comment. Talk about age discrimination!. As if losing something else to this disease doesn’t matter. So my advice to medical staff would be not to assume that just because a woman is “of a certain age” she won’t care or be upset by an early menopause.
Geraldine
good luck to you both who are having your opps on friday as my friend said to me who wasdiagnosed 3wks b4 me i will kepp you in my thoughts
hi Geraldine
really not acceptable is it? I’m 50, post menopausal and my breast surgeon keeps reminding me how YOUNG 50 is.
hugs
Hi. Felt I had to add my comments to this post. I have just spent a week in my local hospital with Neutropenia after my first chemo. While most of the staff were fine, some left alot to be desired. I went in a week last Thursday and was told to wait in the waiting room of the assessment/ward dept, having handed in my letter explaining that i was on my 10th day post chemo, they sat me down amongst people coughing, and being sick, my OH after 10mins went to the nurse and asked him was he aware I was a chemotheraphy patient and had he read the instructions from my GP, no he wasnt and no had not read it, panic stations! within 5 mins I was in a isolation room. I have a immune disease called Schleroderma which means I dont heal very well so my wound 8 weeks post op is still not healed and had got infected so a junior doctor was sent along to take a swab, her first words were “I havent done this before usually the nurse does it” She literally had not got a clue. I was admitted at 3pm and eventually got to a ward to 10pm. and things did not get any better. I told them that it was important that my temperature was monitored and anything above 37.5 should be reported to my oncologist at the cancer centre, that was fine till Saturday night when a nurse came on duty and said my temp had been fine so no need to bother!!! What? I was a patient with Neutopenia at risk of infection so on her say so all my observations were ceased to once daily, no matter how much I stressed the importance I was ignored. My Oncologist came on Monday which was my 4th day in hospital, I was in a side room in isolation and the staff were putting on plastic gowns to enter (well most of them, did not seem to matter that the domestics came in and chucked the bin all over the place). My Oncologist at least worked out a plan of treatment for me. On admission I had been having two IV Antibiotics which he cancelled and replaced with 1 powerful broad spectrum antibiotic, fine at least I was getting the correct treatment now. If only it was that easy, when the first dose was about to be given I noticed that there were 3 bags and I queried this, but was assured by the nurse that my oncologist wanted me to have all 3, so I thought maybe I had not understood him as my concentration level was not at its best when I saw him, I had the first IV at 10p.m. and then again in the morning at 6pm, Then they discovered It had been a mistake! I should only have been given the 1 Broad Spectrum one Unbelievable I know but this is exactly what happened. I Had in fact had 4 bags of antibiotics that I did not need as the one the oncologist had prescribed in his words was "like domestos ."The hospital staff tried to be quite " Oh dont worry they wont do you any harm "about it but I am at home now and I can not stop worrying if they have done any damage to me, as there was panic stations on the ward and the senior pharmacist was sent for, the fact I was not lying flat out seems to have satisfied them that all is fine and maybe it is ,but Im so upset that they have reduced me to a worrying wreck when I was coping quite well… They were planning on putting a central line in the arm that Ive had the breast surgery I told them I was not happy about that, but they said it would be fine. I had already had one put in my good arm which was removed after a day as I had got a infection. the explanation for that was that bugs must have been in the tube on insertion, luckily my Breast Surgeon arrived and told them she sending me home, as I was getting more infection in the hospital. My Oncolgist is totally unaware all this has happened as he only visits the hospital once weekly and the next time I see him is a week on Monday for my 2nd chemo.Im sorry if this a rambling post but it has done me good to write it all down. I will insist now that I go to the oncology centre in the future and not my local hospital, it is quite a journey but if I get the correct care then its worth every mile. I feel really upset and let down by my experience. Its bad enough having the chemo put into you without unecessary drugs aswell. Thanks for listening to my rant.
Love Jillianxxx
Oh, Jillian, how AWFUL for you! I felt really angry reading your post. What sort of training and monitoring are these people getting?! Yes, please do go to the oncology centre, stay away from that hospital. If you feel able to, or perhaps your OH could, you must complain in writing about this appalling treatment. I am still seething with anger for you. I am glad you got it off your chest (!!) and hope you feel a tiny bit better.
Love
Emma
xxx
Hi Emma, Thank you for your lovely reply, I do feel better for letting it all out. Im not a emotional person usually but today has not been a good day, my hair is falling out quite rapidly, plus the worry of what has happened i have been very tearful, I am going to have a early night and tommorows another day, as they say… The only way is up! Thanks again I do appreciate it.
Love
Jillianxxx
Gillian … how absolutely horrendous, we need to trust our hospital staff , but after that I just wouldn’t want to go back…I had similar experience and you just think you have misunderstood. I am sure you feel better for having a good moan but please please don’t let it happen to you again. If in doubt ask questions and if they dont know make them find out before they do anything to you… I am a long way down the line and I have learnt that the only way I can cope is by being knowledgeable and you get so much from these wonderful people on this site and also the angels who look after me at my hospital and drs surgery and hospice … they are really out there… but the bad ones are only a few… keep your chin up and keep asking all the awkward and silly questions you can think of.
Sorry J
illian spelt your name wrong put it down to absolute anger
done it again Jillian
Hi Wisdens. Thank you for your kind words. I feel better today. I have decided to contact my BC nurse tommorow and put her in the picture, also visit my GP, who hopefully will do a blood test to just put my mind at rest. I feel that it should be documented somewhere other than the hospital what has happened as they are the only ones who know. I have never been a complainer but there is certailnly a lack of knowledge in this hospital of guidelines for cancer patients, and I would hate anyone else to go through the same experience. I will now take your good advice and make them find out before they come anywhere near me. Thanks again, I do appreciate it.
Love Jillianxx
Excellent, Jillian. Definitely tell a professional you can trust. So glad you are feeling a little better.
Love
Emma
xxxx
1-Don’t put a chemo patient with a temp in a ward full of coughing sick peolple with 5 or more visitors at each bed all of whom stayed for 3 hrs!
2- Don’t walk into a room where a patient you have never met before is laying 1/2 naked, exposing mastectomy scar and say ‘Umm that looks ok’ then walk out without a word of introduction or explanation. (onc checking radiotherapist had set things up right, but I had never met him before or since!)
3- If you spot an unconnected problem on the body of the unconsious patient during surgery for BC, don’t refer her to the dermatologist without telling her, as when she gets word from that depts secretary about the urgent referal for a skin liasion, she may freak out!
4- The curtains around your bed are not sound proof and all and sundary can hear your personal diagnosis, treatment plan etc.
5- (I’m including this for my friend) Don’t tell your patient that there is no point in having further tests after treatment is finished as in her case, there is nothing more they can do for her if secondaries are found!
Generally I had very good care but also had the non-specialist ward after surgery with some staff who didn’t have a clue about sensitive handling. i.e. when I was first encouraged to look at my wound with the staff nurse in the washroom, people kept barging in even though the door sign said engaged.
Finally, I too had to strip off in the radiographers room and walk over to the table bare chested. The velcro gown thing sounds good. Most radiographers were good, but it was a busy dept with complete strangers, other radiographers coming and going while the machine was being set up for each dose.
Hi again Jillian,
Oh my god you had an horrendous time. I do hope that when you feel up to it you write and complain. This is not acceptable. As I said in the other thread, you don’t need anything else to worry about right now.
I am sending lots and lots of hugs and kisses - I am thinking of you,
Tracy xxxx