You really are going through it - I'm so sorry. I just wish there was something I could say or do to make it better or go away.
I was eating supper at a 'table for one' yesterday evening and that consisted of macaroni cheese, followed by steamed syrup pudding, which would have been fine had there been enough custard. After quite a bit of coughing and choking the chap from the next table had to go and get me more custard! This having/needing to be 'difficult' about what one eats is actually embarrassing as it just seems that one is being awkward. Went to the funeral of a chum's mum today (well, she was 98 and had done incredibly well). I knew there would be a jolly good turn out and I was asked to go round to the pub afterwards. Managed to get as far as the doorway at the pub and realised that drinks were being handed out in a very liberal manner and there was a whole room set out for a sit down lunch for heaven knows how many people. That was it. Too many people for one thing - can't keep up a loud conversation - mouth gets too sore and dry. Can't drink anything that was on offer, and can't eat a standard meal, so the only thing to do was to come home. Well, at least it meant I got home earlier than I had expected, keeping to a very steady speed in the high winds up on the Berkshire downs.
I do hope you find some relief - why don't these things get any better. That's not what it said on the tin. It said it would all be OK. Why can't they tell the truth. But then they have never been through it.
That is utterly disgraceful! Poor you - is there nothing that con be done? Don't tell me....
The best I had in that direction was when an urgent MRI scan was ordered and I was told it would be within two weeks. Two weeks came and went and I was getting a bit grumpy about this so I started making phone calls only to be told that it hadn't been marked up as urgent and it would be within six weeks. They took that appointment to the very last day of the six weeks. At least my Consultant demanded an instant review of it and saw me the very next day. Luckily all was OK, but it well mightn't have been.
Someone needs to make a fuss on your behalf - if I knew where to start.....
It really is no wonder you are totally teed off - I am sure I would be after all that. What a saga. Apart from anything else one wonders what the practical cost is - fuel for all these hospital trips, car parks, etc. Makes me feel like I have got off very lightly - no wonder you sometimes feel you can't go on.
I see you have emigrated - to the moon. Is there anything up there that is edible or, at least, that one can eat in comfort?
Normal life - what's that? I find I am becoming quite insular, but that's OK as I'm pretty comfortable with my own company.
One thing I would like to be able to do is distinguish between whether I have a sore throat or not. It means that I am not able to tell whether I am starting a cold or not. Then, if I am I can't take a 'couple of paracetamol' as I am on 8 a day anyway - which I hate, but I think they are the last things my doctor will let me give up. Have given up the Oxcarbazapine as I ran out and not taking them didn't seem to make any difference, so why take them, though I do now have a supply - just in case the neuralgia starts that stabbing pain again. That has gone but everything is permanently pretty painful.
I have removed all recent posts as reading through them they are not at all encouraging to anyone newly diagnosed or to anyone still having check ups and not discharged and are even worse for anyone discharged. Hope you all get the care that you deserve. I wish you all well.
I appreciate what you are saying but please don't shut down completely - you are entitled to your say as much as anyone else. Nothing is always encouraging, but we are here to help one another - you most of all.
Hi, I second that Petronel, I have always found Rosie's responses so encouraging. I know your not feeling your best Rosie, but please keep in touch with us. I for one feel this website is a godsend I really feel amongst friends who can relate to our condition. Love Emmy xx
Little Rosie,we have to say it how it is on here becouse that's how we get to trust each other and help each other.it would,nt work any other way.if any of us are struggling we need to be open to get help from others and also new ones know we're genuine,warts and all.you are an important part of the site.takecare.xx
We all appreciate your continued support - and, believe me, you are a great support to us all. However, it is not all about us: it is about you as well and we want to do the best we can for you. I get very worried when you go 'all quiet' on us. And you need to remember that if you are not feeling 'up to the mark' then this is the place you must be able to let it all out - where else can you do that?
Your postings and problems are not discouraging to others - well, not me anyway. One reason for most people joining the forum is to share their experiences - good or bad - and they cannot always be good.
Hi Lr. All experiences are worth knowing about, be they good or bad. At least they are honest and not overinflated or scaremongering. When I was diagnosed I didn't have a computer so was completely in the dark. If I had access to this forum I could have made informed decisions about some of my treatment. I wouldn't have had RT for a start but at least I could have judged on honest opinions.
Ok I will say it as it is then. After radiotherapy I could eat well and lived a relatively normal life apart from some jaw spasms. When I did start to have problems no one in the medical profession wanted to know. I was treated well until I was discharged from check ups in 2006. Once you have reached the 5 year survival they feel that they have done their job. Finding a doctor or dentist who had any idea about radiation damage in this country is near to impossible and the blame is always put on something else. I am disgusted with the state of the NHS and how so many times they have forgotten to put me on waiting lists and the distance that I have to travel and the continued delay. Getting to see the GP takes 2 weeks and they do not have the time of day for anything that cant be quick fixed with a few pill. I would certainly not have had radiation if I knew it was going to be like this. I would not have had orthodontics either but was told by dentist and orthodontist that the radiotherapy would not cause any problems. I was also advised by periodontist to have wisdom tooth removed but at least I knew better than that. So I continue to suffer and I think that they are waiting for my teeth to fall out or my jaw to break before they do anything and even then I think I would have a very long wait before anyone did anything.
You certainly have been very unlucky with the treatment and attentiveness you haven't received. Although I am suffering (not nearly in your league) my GP really is very efficient - once you can get to see him. I ran out of Oxcarbazapine three weeks ago. I hadn't noticed a difference in the first week, but did renew the supplies. Thought I would try another week without taking them. Saw GP a week ago and explained the situation. He said OK but leave them on prescription - just in case. Yes, you've guessed it. I am back on them as I started getting horrible stabbing pains into my ears. I started back on one a day but left a message for GP to phone me, which he did at 8.30 yesterday morning, and he told me to go back onto the standard two a day to work them back into the system.
ENT Consultant isn't too bad, but the GP is much more efficient.
What I do find so boring is having to take all one's food with one when one goes away. Have been cooking all afternoon as I don't want to trouble the rest of the family with my 'peculiarities'.
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