The start

Thanks will discuss my stoma later. I was now ready for RT and Chemo for six weeks.  I had RT for five days a week and Chemo, blood test, scan, and clinic one day a week. The RT at first hurted my ear and I took tablets. It lasted 8 minutes and with a scan a few minutes longer. I told them to tell me every 2 minutes which they did although they sometimes forgot. You are undressed to your waist which can be cold and you are also apart from the head mask given a stoma mask. I am not exactly sure why. I dont know why you cant have a blanket. The RT itself doesnt hurt. One usually had to wait 1-2 hours and sometimes more. I dont know why they cant get there act together but as is usual with inpatients time doesnt exist. At the end I was told it was a pleasure dealing with me. One wonders what other patients are like, I do what I am told and cant speak to complain so what else. I also had chemo which includes a type of urine test. One is assigned a nurse all she really has to do is make a canula and give you three drips. She never seemed to be there when a drip finished and you had to wait for another nurse to do it. This took about 3-4 hours. Again one has an appointment at nine and wasnt seen before 11.30. As I have already said it only takes 5  minutes to put your drip on and there were plenty of nurses there on computers. They could have spent 5 minutes for me instead of making me wait so many hours. This was every single time. And after that I had still to go to RT with another long wait. In other words it was a full days job. The  chemo also didnt hurt but as already mentioned I did once feel very ill and had to have pain killers. The clinic which comprised a doctor and speech therapist and dietitian was once a week. Usually the day after the scan. The doctor who was nearly always a different one asked the same questions every week and wrote down the answers but not on the computer, so the doctor the week after who didnt see his notes would ask them again. Since I cant speak I typed my answers but I had to bring my own laptop. You would think the hospital has enough computers to be able to give a patient one to use in the clinic. I asked a male doctor who is training whom here, he replied we train each other.  Only once I was told I was losing weight and my head was getting smaller and the head mask would have to be made smaller, that stopped me losing weight. It was too tight as it was. The dietitians suggested I should have more ensure, I cant stand the stuff and would have to have it through the peg. So I suggested instead I should have extra of my fibre which was meant for the peg. I seemed to be teaching them all the time. One female doctor, I only had her once went on about I must swallow solids which I couldnt at the time. She said then I should take pain killers to do it. I took two codeine type and was instead ill for some time in bed. I dont know why they hurry you up all the time. By the end I could only drink a bit of tea and my mouth had thrush but I kept my weight. Then the skin started pealing and at the moment has still not grown back. They said this was normal and if not the RT hadnt done its work. One has to wait till the crust falls off on its own otherwise the skin will never heal. 

Sounds horribly familiar seeker1

keep on going, I was told it do end, eventually.

and then the side effects last and last and ...................................

BoL

E

Last week I had an appointment with the top Radio doctor and my surgeon also came in. It was the first time I was seeing her. I gave her an update of my condition.  She looked at my stoma right inside and found some mucus which she took out. We differed over how long it had been there, I said I had cleaned it before I came and it had come "on the way to the hospital and the long wait to see her" she said it had been longer and I dont clean it out properly.  Well my experience is, is that it comes every few hours. Otherwise I mentioned that my neck is tight and that makes it painful to swallow, she said that next time I come I would have an x-ray if things hadnt improved. Otherwise my pealed skin still hadnt all come  back and as I said my stoma needs too much cleaning, on that she said that it would take many months to improve.  I thanked my surgeon for saving my life and told the radio doctor that I would rather have done without it but she said it was not possible. She said I must do more nebulising, I seem to manage without  very  much and most  likely could manage without any at all but she said that without it the mucus does not rise to the top, well she ought to know.  My body seems to be different to every other body, I dont have pain and never take pain killers, I dont take any anti-sickness tablets, which anyway  never seem to work, I dont have a suction machine which also wasnt strong enough and I dont  really need to nebulise. Also I went to the nutrition doctor and asked him the average for MPH for feeding and he said 100 when I manage 170. He told me as long as my "stools" are in order I could carry on. My weight has increased so I dont need to use the peg so much that is a relief!. I am coughing a very lot now, maybe it is the cold weather although I am indoors all the time and nebulising doesnt seem to help. So I am really only on thyroid tablets from the operation. My head is also working a lot better, up till now I could only do jigsaws, a 1000 piece took me over a week but now I dont need do to them anymore to pass the time. I can do more constructive studies. 

hello seeker,

A lot of what u say is familiar, patience dear patient, it do sort it out and everybody has different reactions to the same treatment; pleased to see you are surviving, but what is 'the peg' ?

E

My storyI have just come out of hospital of nearly a week stay. On Wednesday I had an appointment at the hospital, before that I was very short of breath and was vomiting blood. The night before was terrible I vomited a large amount and could not breathe or use my legs which were cramped. After I vomited the blood out things improved a bit. I told this to the doctor and nurse or perhaps she was also a doctor as she did most of the talking. They said I had to nebulise more. I said that was impossible what was wrong with me. I then begged the staff to find me another doctor and also a voluntary worker tried hard but to no avail. So I went home and wasnt sure what to do next. My wife said I should try the emergency but they would only contact that doctor and they would send me home. On Friday I decided to send an email to my surgeon and he replied almost instantly to go as an inpatient. I managed to get to the hospital on saturday night.The emergency staff seeing his email got to work and immediately gave me tests and x-rays and sent me to the acute ward. There they gave me 5 units of blood (not 3) and said they would check my throat with a camera. It seems I was losing a lot of blood from internal bleeding and was digesting it. My stools were really black.  Since the next day was Sunday they left it to Monday. On Monday I had the camera test after a morning fast and they said they somehow stopped the blood and afterwards I could eat or drink and the next day they would do it again. This they dont tell you in advance that it needs to be done twice for different ways of stopping the blood. The next day Tuesday, it was cancelled at 5pm having fasted till then, so I asked to go home for two hours to settle some things. I was told by the concerned doctor that he didnt want to bring me back on a stretcher but that it was not a prison and I could leave but not come back. I said it was worse than a prison more like a concentration camp see further. I said if they cancelled the operation for that day it couldnt be critical but to no avail. I had already asked for a nebuliser but this was refused, so I managed without. They also put food in a peg that night at 100, I told the day nurse I can manage more but she refused. The night nurse had more sense and did 160 so I nearly managed to finish the bottle before midnight. For some reason for the second test I had to stop eating at midnight and the next day had the test which was Wednesday. Instead of doing it in the morning they left me till the last and it seemed they rushed off home. Instead of going back to my ward to my concerned doctor I was put in a new ward although they knew it was only for one night. I asked the new ward if I could eat and drink like the first time and use a peg they said they didnt know but a doctor from my old ward would soon be there. He never turned up. So I asked the night staff who brought up an emergency doctor who came at 2.15 am who also didnt know. Before that at 1.15 am they went round waking all the patients who were fast asleep for blood pressure. Do people really die that often if they dont wait till morning for it.  So I stayed fasting with a big notice on my bed NBM till a doctor reviews it. I was scared to disobey because I had no idea if my second camera test was a success. This ward didnt know what to do with me, they had received no instructions from my previous ward, so they kept me starving (like a concentration camp) for 40 hours. I said I would dehydrate so they put in a drip. No doctor came the next morning either for me. My concerned doctor whom I was under should have come himself or sent someone. But he couldnt bear the idea of letting me out. After 40 hours fasting at 3 pm I asked the sister if she still wants me alive. So she decided to use her own ward doctor who came and let me use my mouth, and signed me out and I went home. They knew I would be gone the next day and still dumped me in another ward for just one night. I have no idea of the reason except what I have written. Since I cant talk and have to write or type everything it is difficult for me to find out things. Over five days I had only eaten and digested one litre and my own blood plus the transfused one which compares favourably with a concentration camp.