We understand that people with cancer are worried about coronavirus.
Here is the
We will update it regularly.
How my cancer was discovered and the treatment I recieved
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
All the best on the start of your treatment. xx
The hospital is no holiday camp more like a prison. Or the way they put it they cant stop you going out but they dont have to let you back in. They are very short of beds and I cant remember when one was empty for even one day. It takes a long time to be discharged they have to make sure you can look after yourself before letting you out and many discharge themselves. No one wants to stay. At night I couldnt sleep there is always some noise going on. The nurses talking, a bell ringing or a patient making a noise.
The system seems to be there is a 12-13 shift from 8-9 day and night. One nurse has to look after one room which has about seven patients. There are also free student nurses who get most of the mundane jobs like washing patients. There is also one person in charge. The nurses are male and female, and the wards are also semi mixed. The gowns they give you dont fully cover you and there is really no modesty. Each patient has a folder where the nurses write in daily and nightly. They also give over verbally to the next shift. This can cause mistakes.
They come to check your blood pressure and prick your finger much too often. In my case very often when I had just managed to get to sleep. They dont like it when you refuse but I made an agreement that once a day and once a night was adequate for the pricking. They have to provide your medicine and prepare it for you which can involve crushing it. They often leave it over to the next shift. There is no real time for anything.
If you have a complaint or problem what do you do? For instance the nurses are mainly Irish EU and from the far east. Very few are English. Some are better than others but some can be very callous. When I was in intensive care where you are supposed to be one to one the nurse was never there. She was either on the computer or talking to other nurses or in break. You are given a buzzer to call them but you can wait up to 15 minutes before they come. I was then in great pain so I banged on the bed the nurse came and told me to stop banging and left me in pain for 15 minutes before she came back to see to me. There is a picture of the matron somewhere in the ward with her email and that seems to be the only way to get to her. It is very important to have something to do all the time. Just lying in bed doing nothing is the worst thing. There is a TV next to each bed but they charge about 10 pounds per day, a really ridiculous high sum, but people paid it. Some wards make problems if you bring your own electrical goods and want to join it to their sockets. For instance the socket in the intensive care was very far from my bed so I had an extension wire, this same nurse didnt allow it although she did allow my lap top. So my friends had to get a long wire for my laptop.
Carrying on. Some nurses though went out of their way to help me. Even those not from my "room" and before I even asked for help. I think they liked me because most patients are old otherwise they wouldnt be havent surgery only radio and chemo. These patients are bored and their outlet seems to be to bother the staff. I was never bored and hardly ever pressed the buzzer for a nurse only when it was really necessary which was not often. Although they tell you repeatedly what will happen to you in hospital more than once and by more than one staff member this most important thing about preparing not be to bored is not discussed. Of course the best thing is to have someone with you the whole time, I cant emphasize this enough. Even in the intensive care which is supposed to be one to one I got more and better treatment in the ward where it is more like 7 to 1. I suppose there the nurse has to be the whole time and cant go on "breaks". I had many visitors daily, I only live about an hour away from the hospital and am quite well known. Some even came regularly and all wanted to bring me something. But what could I want, I couldnt eat, or read or listen to radio or music. One brought me a dozen Enid Blyton books these I did manage to read. At one time I could only eat yoghurt before the operation, the nurse herself bought me six packets and wouldnt accept payment. I had a laptop which also had tv, I didnt pay the 10 pound a night. I was quite high up so a normal aerial worked fine. I also had my own internet the hospital one didnt work too well. So I was busy writing text messages emails and watching tv and playing computer games.
My first stay in hospital was for the biopsy. I underwent many tests and until the biopsy it wasnt too bad. After the biopsy as already mentioned my bladder and bowels didnt work. I had to wear nappies since I had no control over them. The hospital ones are not very good so I bought some from Boots. The nurse in charge would under no conditions allow me to have a catheter saying it caused infection. This seems to be common with all hospital staff they are very reluctant to allow one. The only way is to ask for a bladder scan ( I didnt know this at the time so I suffered terribly) which is a small machine to see if your bladder is about to burst. Only then will they insert a catheter. Usually by a doctor but some nurses can also do it. There is not much to it except that it is a very sensitive area and has to be done slowly. After the biopsy I was told I would have to have surgery radio and chemo. I didnt want surgery (who does!) but they said I was too old and if the radio didnt work I would not then be able to have surgery I wouldnt be strong enough. I dont know, now that I have had everything I feel just as strong as I was then. I then stayed in hospital to undergo many tests. I also decided to look after my affairs mainly to put everything in joint names with my wife. Most banks refused so I closed all my accounts and moved to the Nationwide who are very flexible and have the best online service. They were very helpful and realised I was very ill. Since I was in hospital I couldnt look after my accounts properly which meant some were overdrawn, so I paid the price. I was told repeatedly by many of the staff what would happen, and shown diagrams, namely the voicebox would be taken out with the food pipe and the wind pipe would be cut. A new food pipe would be inserted made from the stomach and in the meantime I would use a peg. One cant tell a doctor what to do even though I wanted for instance my nose to be blocked, it doesnt do anything and causes a large amount of trouble. I had to sign many forms that I understood what was going on and then an appointment would be made for surgery
My next hospital stay was for the surgery. I first had a week of test and then an eight hour operation. I was then put into the intensive care unit for almost a week and then brought back to the ward. As I have already written it is much better in the ward. Before the operation they take everything of yours and put into a bag and lock it up in the ward. That means if you need something like a watch or laptop in the intensive care you cant have it, since it stays in the ward. I had great difficulty in getting things from the ward which I needed in the intensive care. You are left with only your gown and nothing else. So my advice is make sure your friends take it and bring it back to you in the IC ward. I didnt feel any pain after the operation only where they had put a peg in. Especially when they did suction then it really hurted the nurse seemed oblivious to this fact. I had to hold my stomach tight. They give you some kind of buzzer which causes some kind of drug I think phenylin to be administered but it didnt seem to work . The main problem is the drug what you are given to sedate you at the operation. One feels in dream land or should I say more like nightmare land. I suppose it is something similar what one reads that drugs do but on a much wider scale. One gets the worst nightmares possible and also every sound is more like thunder. The nurses talking in their own language (not english) really sounded like that and was terrible. You hear words which sound like English. One should try to stop ones dreams immediately and wake up, they only get worse. The best thing as I cant stop saying is to have someone with you at all times to hold your hand. Dont expect the nurse to do it she wont. You will be lucky if she is even there. This can take up to two weeks to get out of. Time also goes very slowly although there may be a clock in the room you may not be able to see it. It is not like a ward with cubicles just beds "thrown" in. One can move ones hands and feet but not ones body. One lies on one's back and cant turn to the side and certainly not over. The neck and body is full of stitches and staples which are taken out later. After a time (too long) you are taken back to your ward not always in the same place or room as before. As I have already mentioned they had taken out the catheter and didnt put it back. So now I had that problem till they used a bladder scanner. My bowels had stopped working altogether, again this hospital doesnt know what to do about it. The enemas didnt work and really hurted. It took them time to give me fibre to eat. I dont know why they cant do that straight away, other patients I noticed had the same problem One cant tell a doctor anything showing her on the net how St Marks hospital copes will not change her. That is the way we do it and that's that. This was a common theme all the time. They also hurry you up for no apparent reason like to start walking. It was hard to get out of bed and I needed help and a walking frame. But I managed quite quickly and was soon out and about, I dont like staying in bed. The doctors came daily with a "string" of students following them but they didnt have much to talk to me. With other patients they stayed quite a long time. I had to have a test which meant drinking some type of liquid to see if my mouth and new food pipe was in order. I failed the first test that meant staying another week. I wanted to go home but all the doctors wouldnt allow it except my surgeon who seemed to like me. So I went home in the end after a whole lot of questions to make sure I could look after myself. I had a nebuliser and a suction machine which I had to provide myself. The hospital suction is much more powerful whereas my machine didnt seem to work and I have never used it and seem to manage very well without it. One can also get a hand suction which also doesnt work. It will work in a glass of water but not on the stoma. I dont use the nebuliser either that much only when I really need it or before going to sleep.
Oh deary deary me,
How familiar the experience you describe the trauma of catheter after biopsy op. and the and some of the hallucinations one has when under whatever it is is 'they' pump into you after a major operation.
I will admit that I had some shortcomings but not as bad as you have described and the staff on the ent ward I was on were, on the whole, pretty good, I did not need IC, but can remember the absolute pleasure after having various drains and tubes removed; I could turn and sleep on my side!! ( I still do and cannot settle on my back)
I have since learned that bowel problems are common with all these treatments but ENT stops at the upper chest so have no concern of extretia or breathing, this goes for RT aswell; (there should be proper research on side effects of these accepted treatments on a more holistic level. Unfortunately the only part of the NHS that looks at the whole person is the General Practitioner; (if you can find one who has the time)
I hope you are handling your phlegm control, everybody is different and I am only coming to nearly control after two years with a balance of HET's, nebulizing and bibs. It is a juggle and so much depending on personal environment and weather so hospital staff can't help much.
Your blog is interesting, I look forward to the next installment.
Happy New Year
Thanks. So someone is really reading my blog! It is not phlegm but mucus and I have been told to expect it for the coming months. Shall write more about it when I get to the RT and Chemo. My hands were also covered with canulas. I wonder if hospital staff read this site.
I have read your story too.
I am a HCA working at Sunderland Royal Hospital.
So yes people from the NHS are reading your story.
My mother Had her voice box removed and had a stoma.
She was one of the first people to Survive this operation and lived another 27year after.
I am now caring for my Farther who has terminal cancer.
I read your very detailed story?
You have good reason to complain about your treatment but there are also areas that I think was down to lack of communication on the hospitals part.
I think there should have been more than explanation?
I will go back and through your story and see if I can help?
Good luck and keep on posting!
Thanks I am pleased to know that at my age I still have another 27 years! I was now at home and still had my teeth I could eat but not over eat otherwise I was sick. I received many tablets and medicines when I left hospital mainly against sickness but they didnt work too well and I have stopped taking them. I have to sleep even now almost sitting up otherwise the food goes to my nose. My mouth I can at least wash out but what does one do with ones nose? I have already said they ought to close it off since it doesnt seem to be doing anything. I have shown this to doctors on their diagrams where to do this but as usual the answer is no and it seems they also dont know why. It would help me a very lot and I am sure others. I also have to sleep on my back and be careful never to bend down. Now I had to take my catheter out since I could manage without it. I went to the nurse who reluctantly put it in but she would not take it out only on a doctors orders. This makes no sense to me. They either want it in or they dont. Anyway I got it out in the end and have had no trouble since. My bowels also started working and I could discard the nappies, I still have to use suppositories much too often and at Boots they cost a very lot. So I bought ten packets online at a very cheap price. I use a dilator to put them right in not like the doctors who use two. Now I had to prepare for my RT and Chemo. This meant having all my teeth taken out. This was done in hospital in two sessions by a very good dentist and also the gums sewn and the stitches taken out. But they are not prepared to put them back in meaning dentures I will have to have them done myself I now had to have my face mask done. It is very tight and also how high my head has to be. They could make more holes in it like for the eyes. Without my teeth it was of course much harder to eat and still is, the best food seems to be plain boiled soft potatoes and they dont seem to come up.
your blog is wonderfully descriptive and an entertaining read of the honest tribulations a lot of us have/are going through. You are really giving me an uplift.
By the way phlegm and mucus are the same thing when coming out of the trachea, its what you used to swallow or spit out after a good cough..
To clear your nose try the 'hidden yawn' technique using the mouth cavity as a suction device to draw air through your nose, you must have done this at some time when utterly board at a function but didn't want to show a yawn. That is the technique applied in a different way.
Safe payments by:
We're here to provide physical, financial and emotional support. So whatever cancer throws your way, we're right there with you.
© Macmillan Cancer Support
© Macmillan Cancer Support, registered charity in England and Wales (261017), Scotland (SC039907) and the Isle of Man
(604). Also operating in Northern Ireland. A company limited by guarantee, registered in England and Wales company
number 2400969. Isle of Man company number 4694F. Registered office: 89 Albert Embankment, London SE1 7UQ. VAT no: