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I noticed I couldnt swallow properly. I went to my GP who sent me to hospital for tests. For some reason at my first appointment the doctor couldnt see the cancer in the larynx. This  caused an unnecessary delay. In the end after more tests it was found. I complained that one doctor to check is not good enough, or at least a film should have been made of it.

Anyway I was admitted into hospital for a biopsy. Due to my age they were not prepared to do just radio and chemo but also surgery. I think this was a mistake since now my life has  completely changed. I of course had an anesthetic. This caused multiple problems and I would advise anyone undergoing this to be prepared. I had to have a catheter inserted and my bowels didnt work either. The cancer hospital was not prepared for this and didnt know the correct treatment for bowels disorder like St Marks hospital. They gave me enemas and what not which didnt help. The correct treatment being some kind of colon irrigation. They waited till I was almost bursting before inserting the catheter. The doctor who did it was very rough and it really hurted me and I had to have it  taken out  it out and reinserted.  To be continued

Anonymous
  • I havent posted for some time. Yesterday I was in hospital for my seventh endoscopy and twentieth unit of blood transfusion. The ward doctor wouldnt let me go home saying i also needed potassium. So I discharged myself and said I would be back the next day for it. Today I went back to the ward and asked her to give it to me. She kept me waiting two hours and then said I could wait all day. So I went to A & E who said at 3.8 I dont need it. They also sent me to another doctor who said it was dangerous for me to have it. This other doctor also showed me my discharge papers and no mention of potassium was on it. Is this normal.

  • This week I had a very bad week I had to be taken into hospital by ambulance on saturday night. Also since they have been starving me out all the time in hospital as an inpatient my blood pressure dropped even though I had enough blood. I cant think of another reason.

    Anyway I need blood every other day. The question is how much. I have asked them to fill me up but they wont do that only top me up.

    I ate a lot through the peg now and my pressure has returned.

    Now the A & E who know me too well are very good and put in a canula straight away. Then my blood has to be tested for HG to decide how much to give me. The test doesnt take long either. The doctor whom i dont see takes hours to decide even though he knows I need a minimum which he could start me off on and then ponder about the rest. But it doesnt work like that. So after waiting hours he decides, then the blood bank takes hours matching my blood which is a normal blood group. The lazy nurse has to fetch it, apparently it has to be a staff nurse so she takes her time. Once it is here she needs to pair with another nurse to give it to me, again taking time. This week one day I had to wait four hours. Today friday, I arrived at 7 am. and was only given the first unit at 10.30 and the second at 2 pm.

  • FormerMember
    FormerMember

    Dear Seeker1

    sorry to hear of your dreadful experiences, and the difficulties compounded by not being able to speak.this must be a nightmare situation, and I'm amazed that you can continue with some life outside hospital given all that you've been through.

    I;ve been in Manchester's cancer hospital (Christies) which is not hopeless, and have also had several months involvement with an elderly relative who's been in an out of hospital with a succession of things, some mysterious, some well-known (but not always diagnosed promptly, despite their likelihood).

    My observation is that hospitals and even wards within hospitals differ immensely, but that it is very common for the key staff to be under a great deal of pressure - and in particular, to get interrupted multiple times so sometimes they forget things they were in the middle of. There is no slack to deal with multiple emergencies, and sometimes it is up to patients and/or visitors to remind them of things that are needed, to tell them about what patients have or have not been doing, and so on. There are also very junior staff who have very little power to make decisions and who do not undertake things that obviously need doing. Some may be lazy, some may be fed up with "demanding" patients (especially I suspect senile or confused ones... as a visitor I have seen patients endlessly ringing bells, calling for assistance without then having any real needs, swearing at other patients... they really need someone to talk to, I suppose), and some are probably afraid of getting told off for using their own initiative and/or bothering senior staff.

    But I've been lucky myself with RT and chemo staff,and never had to have surgery. Communication from doctors has not always been great though, and there is too much listing of possible side-effects before you give "informed consent", without any serious discussion; and then not enough discussion of issues that happen post-treatment, which can be when the most severe side-effects set in. (Like the skin peeling off my neck, so I had weeks wearing a ruff!)

    It takes much longer than expected for things to get noticeably better, that was and still is my experience. And progress is uneven - even without radiation recall!

    Good luck and I hope you turn the corner soon

    MilesI

  • Thank you. I was in Salford Royal Hope hospital. They could not do me an endoscopy.

    Today I had a very bright idea. Instead of going to my distant endoscopy hospital and getting topped up there for blood almost daily I would go to my nearest hospital just for topping up the blood. My situation may have improved because I dont seem to have lost blood from my 4 units yesterday.

  • Today i had my ninth endoscopy, the eighth one was done two weeks ago and although still having internal bleeding i did not need any blood transfusions over the two weeks. This sounds like a miracle to me.

    i have now a personal junior doctor, who is the representative of the top doctor. She has taken a personal interest in me and things are going much more smoothly.