I’m afraid I need to rant! After my first dose of epirubicin, I noticed that I appeared to have a lump in my throat each time I tried to swallow but that it wasn’t particularly sore. A few days later, I developed a few mouth ulcers that has made drinking a little painful. Usually being the kind of person to just grin and bear things, I instead took the general advice to get in touch with the oncologist nurse who told me to make an appointment with my GP just to ensure that there was no infection and to ask for a prescription of diflam and corsadyl if otherwise okay. On phoning the surgery, though, not only have I really had to struggle just to get an appointment for today - they have over 7,000 patients they tell me - as if I wasn’t one of those 7,000 patients that they also have a responsibility to see - but I was incredibly patronised with comments such as “If you think it is important that you be seen…”, “I’m surprised that the hospital advised you to contact your GP…”. The phonecall has left me furious! I’ve explained several times that I’m going through chemotherapy, that my resistance to infection, therefore, is low and yet each time I’ve been in touch with them I have ended up losing my temper on the phone. I know that my hormones are probably all over the place but I also know that I have a justifiable reason for phoning them and that I shouldn’t be made to feel guilty if I need to see a doctor. Its not that I particularly want to see someone!
Can anyone reassure me that this is an isolated experience!
I suspect this is not an isolated experience! A couple of years ago I was having similar difficulties getting past the rotweiller on the desk so on my next visit I spoke to my GP about my concerns as a cancer patient. I very rarely consulted with my GP over all the years with cancer - but when I did it was important that I see her, and see her urgently. She was very sympathetic and said in future if it was urgent the receptionist should be told that Dr. **** has said that when I call I should be seen urgently and the receptionist should speak to her first. It has worked every time :). If you have a sympathetic GP (and I know we dont all have) then it would be worth having a word with her.
Poor you! You must feel so frustrated. I really do think you have grounds for complaint and when you finally see a doc then you need to discuss it with them. Surely there should be a marker on your records/name so that you get some sort of priority. I also think that the chemo unit could have been more helpful.
My GP surgery has been fantastic, when I went off for chemo the practice nurse came and gave me a big hug, it helped that I had shaved my head and therefore looked like a “cancer patient”! My GP has said to me that if I ever want to see her (even if just for a chat) I just have to phone, I said well it is sometimes difficult to get an appointment, she said oh dont worry about that, just tell the receptionsist that I have a special arrangement with you and to pass on a message to me and I will always see you even if there are no appointments available. I havent had to test it out yet but I did find it very comforting.
Thank you both. I’m probably over-reacting - I have only got mouth ulcers but my sense of perspective has clearly deserted me! I don’t always get to see the same doctor but she did reassure me to some extent when I spoke to her the last time I saw her - but she did also say that ordinarily the hospital manages the patients without the GPs getting involved. Sometimes I feel as if I am being pushed from one person to the next…
Hi Naz - Poor you, how rotten. The receptionists are told to screen people, which is one thing if they know what they are doing, but clearly lots don’t which is distressing not to say dangerous in some cases. Did you actually get an appointment for today after all that? If so, do take the advice of the ladies above and make sure you talk to the GP about how to “get past” the receptionist. If you don’t have an appointment for the GP today I would be sorely tempted to either go to your chemo unit or A and E - really bad mouth ulcers can lead to bacterial infections, and lumps in throats are not good! Other end of the body, but I had some thrush and soreness around my anus which I self treated with canestan. But few days later was really ill with an infection (since treated). On reading up about it today I realise that these mucosal sores can be entry points for bacteria - so not something to be brushed aside. So you are not overreacting and I hope you get seen soon. Let us know how you get on. Good luck. Sarah x
Aaaargh! Poor you am so frustrated on your behalf. It is beyond irritating. Perhaps when you do eventually get in to see the Dr you can explain a bit. My GP was great and even prescribed antibiotics for me over the phone and I just had to nip down and pick them up. Think they had something on my notes which said if this crazy cancer girl calls put her through to speak to dr.
It really is annoying on top of everything else you are going through
Hi, I’ve had very similar problems with the Rottweillers on the phone at my GP’s surgery, they make me want to scream! Anyway, my GP is fantastic, when I have a problem now, I call mid morning, and request that my GP call me at the end of surgery, she calls me, I can discuss what’s bothering me, if she feels I need to see her, she can put me in for an appt via her computer. I don’t know if all surgeries will offer this service, the first time I asked for her to call me I had no idea that I was able to have it happen.
You’re not alone! Don’t you just hate this hassle getting to see your GP? Always happens when you are feeling at your least assertive too, doesn’t it? Might it help to send them a letter explaining how the exchange made you feel and asking how it could be improved for the next time? I sometimes find it easier to express myself in writing.
Hi Naz - luckily for me I live in a remote area and the receptionists at my GP’s know everyone by name - it helps that I take them all a big box of chocs at Christmas. There is no excuse for treating you as if you have a torn fingernail - scream at them: “I have cancer!!”.
I am surprised that the chemo unit didn’t give you diflam and cordosyl as I was given these, plus nystatin pastilles at my first chemo. They already had them boxed up for me and were free, along with the anti-nausea meds.
Cryst has a good idea - I write to my specialists (rarely see the GP) when I have concerns over my bc and Crohn’s and always get a quick response - must be one of the NHS targets.
Take care.
Liz.
Hiya, well, I saw a doctor yesterday - I don’t feel able to say that I saw ‘my’ doctor as I tend to see different GPs each time I go - and explained the difficulties I was experiencing. The receptionist/manager had already spoken to the GP as she was upset that she had upset me - although she did also say that she thought I had not given her time enough to make the appointment without me getting upset - and I was able to explain to the GP that it was not the first time that I had experienced awkwardness - (not worth relating) - but, in short, she has arranged for the practice manager to call me in the next day or two to see if we can’t come to an alternative arrangement - for the good of myself but also for the smooth running of the practice generally for other patients too. She did try to reassure me that I would be seen on the same day if necessary but I came away having decided that from now on if the oncologist nurse suggests I contact my GP that I would go to the local walk in centre instead. I have earned myself a reputation as being a difficult patient and the staff now greet me by my first name before I even reach their desk and, although, as soon as I wear my new ‘hairdo’ they may have to look twice before recognising me, I think I would prefer a little anonymity…
Anyway, I am relieved to say that I don’t have an infection (although my wisdom tooth is really painful) - I should have just gone to the chemist as I was initially intending to do without phoning the oncologist nurse in the first place and then I would have avoided all this trouble!
On other news, my hair, I think, is beginning to shed itself. I know I should count myself lucky - while my tumours were agressive (grade 3) and that I had to have a mastectomy (with immediate reconstruction) - the ‘rogue cells’ didn’t appear to have spread to the lymph nodes (17 were removed) and there was no vascular invasion -such that I have a tendency to think that I’m bit of a fraud going through chemotherapy - the oncologist told me that it would increase my chances of a cure by 5-10% and I’d already decided that if I was given a choice of whether or not to have chemo I would take it because I wanted any cancerous cells to be destroyed - but sometimes it all gets me down… Still, must look on the bright side - its a long weekend and I am going away to Ludlow with my wonderful OH for a treat before the next dose on Wednesday!
How awful, I hope you get seen today. My mum has phoned to see the GP this morning regarding getting referred for a second opinion at the Royal Marsden. I was really concerned that she would be fobbed off with it being Maundy Thursday and told she would be seen half way through next year (sorry touch of sarcasm) but they have fitted her in this morning at 11.10, so hopefully will have some news today.
Hi Naz,
I never know which thread to catch people on .Like you I’m having epi-cmf. First one yesterday. Not the most illustrious day out but survived.
I’ve had to move hospitals and am living with my son and daughter-in-law until chemo is finished, probably 7 months.
I’ve just been to register with a new GP and having read your post I thought I might as well express my concerns about getting seen quickly should I need it. They seemed very understanding and said just relate story to receptionist. So, thanks, that was another little tip I’ve used. Not many takers fron other thread about a book of the month. We could start one ourselves and see who joins in. Let me know what you think
Enjoy your weekend
Best wishes
Trish
when I was out yesterday my daughter recieved a phone call from my GP asking me to contact them, as I was in town today I popped in to see what they wanted, the receptionist said oh yes you had a swab taken and you have thrush and need some canestan to treat it!!! this was in front of busy reception area. I was gob smacked at the lack of confidentiality shown to me I just retorted and said thanks for telling everyone, but there was no apology.
Besides that I actually had the swab 4 weeks ago and contacted the surgery myself after a week and had the treatment required but apparently there was no record of this, which means therefore they would have allowed someone undergoing chemo to have an untreated infection had I not contacted them myself, I am as I day gob smacked
My goodness, Linda, that’s terrible! Its so frustrating isn’t it, not to say worrying and potentially dangerous. I was treated with the same lack of discretion when I visited the surgery in the first instance in order to introduce myself and to establish what the protocol was in the event of needing to see a GP urgently - which is one of the reasons why I am really anxious now if I need to phone them to arrange an appointment - it was enough for me to tell the receptionist that I would be going through chemotherapy for the next 7 months without crying when the surgery was at full capacity - without then being ignored etc… But I don’t like to complain and I’ve been seen now and I’ve resolved to go to the walk in centre when I can instead. And on the whole I am really pleased with the speed and compassion with which I have been treated…
Hi Trish, yes, I know what you mean, it really isn’t easy keeping up with the same people when there are so many different threads but I suppose thats also an advantage as well as a disadvantage as you also hear comments from several other people too - and I think you can also send particular people private messages as well, not that I’ve used this facility yet. I’m glad to hear that you’ve had your first dose - I am apprehensive about the forthcoming dose on Wednesday - but I do feel as if I have some idea now of what I can expect which, of course, I didn’t have before the first dose - I wonder how you are managing now? I felt incredibly nauseous the first 3 days or so - but wasn’t actually sick - and did have trouble sleeping the first night or so - but overall the first few days were indeed ‘tolerable’ as my oncologist had said the whole experience would be. Of course, the side effects can be cumulative so I may not have such an easy time of it after the second course - but we shall see. Do let us know how you are managing when you feel able to. I am rambling now, I know, so I will just say yes, why don’t we see if we can’t generate a discussion ourselves and see who joins us. How do you suggest we do it - one of us suggest a book that we read and discuss online or perhaps we could suggest a subject and then perhaps come up with a list of articles, books, reviews that we’ve discovered on the subject and then comment…? I’m not at all sure how we approach this now having made the suggestion!! Looking forward to hearing from you soon.
I have now written to the senior GP and practice manager about my treatment this morning, I was do upset so thought it is best to let them know how I feel, I am a nurse and usually do not complain becuase I know the pressures but this was not acceptable, I was very embarressed.
Hi Naz Just seen your tale of trouble with surgery. I am so lucky with my practice, you really need to have a word woth oncology Nurse and tell her the problems your having I am sure she will speak to your surgery for you. If that does’nt work ask to speak to the profs secretary and she will more than likely relay your probs to him. Knowing him I am sure he will make surgery sit up. E mail still playing up hence contacting you via site . Wish you had told me about it on phone. Hope this will be of some help to you . Love Bobbiexx See you Wed all being well!!!
I have a friend being treated for severe lymphodoema. The nurse told her to contact her GP if there was any sign of infection. She asked how was she to contact her GP - the surgery had a half-hour slot at 8.30 am for telephone calls, after which there was an answerphone message that all calls for the day had now been taken, phone back in the morning. The nurse said call me if you have a problem and I will deal with it.
In due course there was a problem. She called the nurse. The doctor was on her doorstep within the hour.
Good on you, Linda! Can’t be easy to complain when you work within the service yourself - but I think you were right, although I have found that my energy is so quickly spent now that I don’t have any energy left myself to put my mind to pursuing a complaint, which, of course, I should!
Yes, Phoebe, that’s excellent - I think part of the problem I have experienced, though, is my difficulty in knowing what the protocol is in instances when I need to see a GP quickly - which is why I went to the surgery to introduce myself initially. Still, I think I am more familiar now with what to say to whom in the future - but I’m hoping that I won’t have the need to contact the surgery!
Hi
I have had a bad experience with one of my GP receptionists and reported her. Whilst on chemo i had to see a gp and on arrival at the surgery i was told to wait in the general (very large and very full) waiting room, after explaining my situation i was told if i was physically well enough to go to the surgery i was well enough to wait with everyone else, then after seeing the gp, i had to make another appointment and whilst explaining what i needed to the receptionist she just cut me off to talk to another patient by saying “i need to talk to this patient he is very ill”, I asked her how ill she thought i was and would she like to be in the middle of chemo?
The practice manager was very sympethetic on my complaint and i know the receptionist has been told off
I too had a similar rant over my gp this week! Having had my first session of chemo on 12th March of Epirucibin, about 6 days later I was suffering with an ulcerated throat and in agony. I followed the advice given by the hospital and contacted my gp. The receptionist was quite helpful and offered to arrange a prescription without having to see the dr. and advised to collect it in the afternoon. I was feeling so rough I couldn’t move off the sofa so rang my OH and he agreed to pick it up on his way home from work. Was feeling desperate to get some antibiotics inside me that eve so when he walked in and said he hadn’t been able to get it I was distraught. It seems the surgery had referred me back to the hospital. I rang the chemo unit at the hospital which was so busy it took ages to get through but once I did they were extremely helpful. They rang my surgery for me and called me back to say they had managed to get me an appointment with the dr half an hour later, and commented how difficult it had been and how they should know what the score is following chemo. They too were not impressed. When I got there I was gobsmacked at how my dr then proceeded to worm his way out of the situation by saying that it could have been I needed a blood transfusion, or admission or even that at this time of year it could just be a bog standard virus which wouldnt react to antibiotics anyway! He also claims he doesnt know what treatment I am on nor the dose. Funny, how in the past when I have had things done at the hospital he has been able to refer and locate the information via a link on the pc! He basically washed his hands of me by saying if the treatment didnt work by the end of this week I wasnt to go back to him but refer directly to the hospital. I have been a patient of his for many years and had actually considered changing dr’s in the past
as I have since moved and there is a surgery closer to home, but after the treatment I received on Tuesday, I will definitely do so.
Good luck with your chem - 2nd one on 2nd April and dreading it!