I really don't know how you have coped with all the problems and it is no wonder there are times you have sunk into the depths of despair. You are the person who proves the point that 'there is always someone worse off'. Life is not a bed of roses - much as one would like it to be - and you have had more than your fair share. I have not been lucky over the past few years but at least I have rung the changes with different complaints!
Isn't that interesting - I didn't get a lot of support from McMillan. It was always a case of 'you wouldn't believe what we see in here, etc.,' but moral support was somewhat lacking. As you say, breast cancer gets all the support (?) it could wish for - as a chum of mine once said, it is one of the sex orientated cancers. But one of the girls in the Radiotherapy centre, said that breast cancer, provided it has been caught early enough, is about the easiest to cure as it hasn't yet entered the body cavity.
I am about to start chasing Speech Therapy to see what they think they are doing. A friend's daughter is a Speech Therapist and has been working at a school where the children are speech handicapped. She is just starting out as a freelance on £70 an hour - and there seems to be plenty of work out there. She will still specialise in children but a chum of hers does adults. At £70 an hour I think that the NHS will have to do.
As you say, with breast cancer one is not permanently having to apologise, whereas I apologise before I even start a conversation in order to convince people that I am not permanently drunk. Then one is offered something helpful to 'ingest' - 'honey is very soothing, that'll do the trick!' That is the worst thing. Hideously painful. Oh, what about yoghurt? Forget it. Don't even bother to take me out anywhere. I'll go, but then I will play gooseberry. Have to.
Surely you can cover your head without going to the lengths of changing religion. I am to be found wearing full sheepskin headband in mid April and sheepskin ear muffs in May - all because of the stabbing in the right ear - why it should be in the right, when all the problems were on the left, I will never know.
PLEASE do not leave the forum, neither should you delete your posts. There may be just the two of us out here with 'after effects' but I know our words - and especially yours as you have been through so much and got precisely nowhere - could be of help to someone, somewhere down the line.
At least my lot are not arguing with the fact that my problems are all radiation instigated and look embarrassed that it has happened, but they have to find something sensible that can be done about it. A lot of my time is spent trying to work out how to take pills without half choking myself to death four times a day. I actually get quite frightened about taking them and have reverted to soluble Paracetamol - not nice at all but better than having to physically hook the damned things off the side of the throat. No, that is no fun. The best one is when the Oxcarbazapine don't go down properly and start dissolving at the back of the throat an hour later that REALLY burns.
Please carry on relating your experiences. I come here every day to see what you have had to endure this time. Otherwise, things seem to be pretty quiet out there. Don't know where they have all gone.
Hi, though I have not contributed on the site for a while I do look in on a daily basis and my heart goes out to you both. As you know from my previous emails I have not had radiotherapy as my oncologist didn't think it would benefit me, though I now live with the threat that it could return at any time, getting cancer twice in less than 2 years is no laughing matter. I don't know how I would cope if it comes back a third time and deep down I think they think it will. Since the last operation in February of this year my mouth has closed quite dramatically on the cancer side so I do all my eating on the left now but I manage, my face is painfull now but I try to live with it and am so glad to be alive. I think I have been very lucky with the back up service, I go to the local Macmillan centre for pamper afternoons and though I am the only one with head and neck cancer, most of them are breast cancer patients I do feel a kind of affinity with them as at the end of the day we are all cancer sufferers. My consultant has said that he won't agree to implants as he thinks I have been through to much surgery and I would need aT least 2 more operations to get implants but I am having a new plate made to fit my mouth as it is now so I will see how that goes I see the restorative dentis on Thursday of this week so will let you know what he says. My iPad is about to run out of power so will come back to you and carry on when battery has charged up again. Emmy
Oh dear, oh dear, oh dear, rosie. You really do get all the luck! It would be nice to think that someone actually did some work occasionally.
Although not good to hear that you are having so many problems Emmy it is good to know that you are still out there. My speech seems to go in 'days'. I had a good day yesterday but today has been absolute rubbish and I have been virtually incomprehensible. I don't know that having transferred to taking soluble Paracetamol has helped but I couldn't go on scraping them off the inside wall of my throat for much longer. I am actually quite frightened of even starting to take pills now as nothing seems to want to go down and the ones that aren't actually capsules stick to my throat and start dissolving, which is very painful and nasty and somehow it is best to try to get them back up and spit them out. Charming. Then I vary from too much, sticky saliva and dribbling to not enough saliva. Where is the medium - even if it is not the happy medium?
There are many things that are just too stupid to be imagined - and this is one of them. I am not surprised you are at your wits' end! How on earth do they manage to be so shambolic and get away with it? Is there not some sort of ombudsman you can take this to? Or is it just time to move house, district, everything.......
It just so happens that I was watching the local news just now and a woman on the Isle of Wight had to resort to the Parliamentary Health Ombudsman because it took 12 years before anyone sat up and took any notice of her facial pain and finally gave her an MRI.
Parliamentary Health Ombudsman is Andrew Medlock. Go for it in a big way. If I find out where to contact him, I will let you know.
Good luck with absolutely anything that brings a result - you deserve it. I also think that it was time someone was taken to task over this. I mean, just how long can anyone be expected to put up with incompetence like this.
I agree with absolutely everything you say. You wouldn't be so long out of radiotherapy had they taken notice when they should - if that makes sense. And of course you have had to have various things coped with privately. There are plenty of things that the NHS just doesn't cover - and needs must. One has to do something.
Wishing you would go away and not bother them really isn't going to help anyone. Something has to be done. We all know that everyone's books are full with new cancer patients, but there jolly well should be follow up/aftercare that actually does something.
Now, I'm, sure you don't need it, but I would be happy to do any proof reading, should you so wish - although there are times I can't type one word without making an error. However, it usually turns out OK in the end.
Hi Rosie, have not been feeling well otherwise I would of replied earlier. As you know I decided not to go with the radiotherapy leaving the choice open if it comes back a third time, so I can't imagine what you have been through, nobody in this day and age should of had all the problems you have encountered, and I want to wish you all the very very best with the ombudsman.
You know there is very little wrong with the story - a few spellings but there are no howlers. I think you need to end it with the fact that you really are looking for some sort of help after being sent from pillar to post and back again, and then being told that your appointments don't exist.
My whole mouth is pretty painful at the moment, but then I am down from 8 Paracetamol per day to 6 per day. I got fed up with physically scraping them off the internal wall of my throat when I couldn't swallow them. It was rather painful. I shall take advice next week - not that the advice will make much sense, but if there is another way of taking them that doesn't involve having to swallow them whole, take them as soluble, put up with the burning pain when they are crushed, I shall be interested to find out. Whatever, it is not an improving situation.
Hi, I don't know if you have tried this, but after both of my operations I was prescribed liquid paracetamol and my gp continued to prescribe it for a few months, it was very easy to swallow, I Am Now given soluble ones which are OK for me personally.
I am seeing my GP on Tuesday and the ENT crowd the following Tuesday.
Liquid paracetamol sounds interesting. Have never tasted Calpol but as long as it isn't too sweet or too acidic it could be OK, but it is the Oxcarbazapine and Naproxen which are much more of a problem and leaving me shaking and my eyes streaming because the burning sensation in the mouth and throat is pretty unbearable.
I have written my usual essay for the GP and will do the same for ENT.
Yes, the swallow X ray showed that the muscle at the base of the tongue is weak and that the tongue isn't reaching the back of the throat as it should (could have told them that for free) - also that the epiglottis is hardly working at all, but it is not the epiglottis that worries anyone (apparently one can survive without a working one of those) but the working of the tongue. I am worried about the working of the tongue too - because it isn't! Working that is.... I have been given tongue exercises to do, but so far not a lot is happening. The trigeminal problem seems rather prevalent at the moment and I have just about choked myself to exhaustion today.
Now, isn't that interesting. I had heard a whisper that patients at Southampton were being treated by - and I thought I heard the name right - Dr. Ram. That was as far as anyone got with his name, including the staff, as it is so unpronounceable. It just so happens that he was my oncologist. I go back to see the ENT crowd next Tuesday and there will be no harm in asking the question. I may be told that it is currently only used on patients undergoing treatment.
Saw my GP this morning and we have switched to liquid Paracetamol and liquid Ibuprofen to replace the Naproxen. Haven't tried either of these yet as the timing isn't quite right, but I am going to try leaving out the Oxcarbazepine completely for the moment to see how it goes. If it is obvious that it is needed then I can go to the liquid version, but she didn't want to put me on it regardless because of the cost, and if I can do without it all well and good. I think it is a good idea to review these things once in a while anyway, as if one goes on for long enough one hasn't the faintest idea of what is doing what - or if it is even working. It is going to be painful whatever happens - I don't see much alternative to that - but we'll see whether it makes it worse.
Southampton was where I had the treatment and am still going there for check ups, so it's all under the same roof. I couldn't agree more about dealing with the after effects - and how do people know how to cope if the proverbial is turned.
My tongue is now virtually useless. The muscle on the left side is totally gone and is very swollen - the right side is catching up. Can't even try to start talking until I have removed a whole lot of sludge from my mouth and even then everything is pretty unintelligible. Have sort of been in this situation before - a very long time ago - but that was caused by a bruised brain ('what brain?' I hear you ask) when I knew exactly what I wanted to say, could make noises but couldn't form words. However, on that occasion I was assured that it would come right. It did, but I don't see that there is any chance at all that this is going to come right. I keep doing what I can about the tongue exercises but things are going downhill too fast for there to be any hope there. God knows what they will do with me.
Yes, there is always someone worse off, but it is still painful and frustrating!
Dear Petronel and Littlerosie, how I wish there was some magic wand that could make you both better, what I experience which feels really bad to me is probably the tip of the iceberg compared to what you are going through. Saw my consultant this morning, I have found a kind of blister on my gum the opposite side to the cancer, he looked at it but didn't show much concern, said he would see if there is any change to it next month, but told me to keep checking my neck for lumps and if any appeared or my neck didn't feel right then I was to go straight down to see him and not wait for the next appointment. It will be 12 months in January since they found the second cancer so I am desperate to get 12 months clear. Having had no radiotherapy or chemo the danger of it returning is always at the back of my mind See the restorative dentist again on Thursday for next stage of my plate fitting. Well not much else to report, please try and stay strong, you will be in my prayers. Emmy x
I am keeping my fingers very well crossed for you and hoping for a year's all clear - with many more to come.
Southampton General. Yes. Consultant told me very much as he had told me two months ago. The most recent MRI showed no signs of cancer, but the only way to be absolutely sure would be to take a biopsy - but take a biopsy of what? The fibrosis just continues to get worse - but can sometimes just stop, for no good reason. They keep the victim going for as long as possible until the eating and swallowing get too difficult, then it is a PEG tube (the last thing I would let them do would be an NG tube - I made that very clear and was told they wouldn't even consider it). The next thing it could affect is the breathing and if that got too bad it would mean a tracheotomy - nice - but my breathing seems to be OK, touch wood. They said I seemed to be taking it pretty well, to which my reply was that it was no more than I expected and it was not as bad as being told one had cancer, thank you very much.
I spent a long time with the Dietician and Speech Therapist - both very thorough and helpful, and determined to keep in touch. I had the option of staying with 'the team' or following the Speech Therapy thorough Winchester. Winchester is closer and the car park is cheaper. Both car parks are about impossible to get into. Don't really like Southampton, but they have been very good to me and the whole team is down there - and once you are on their books they never lose track of you. I hadn't seen that Dietician since the radiotherapy days - and we remembered each other well! Me, well know as the 'bolshie one'!
Of course, by the time I got out of there it was pitch dark, rush hour and drizzling - perfect driving conditions for one who thoroughly dislikes night driving.
Hey ho! I have talked so much that my tongue is very stiff and painful, but I must keep exercising it. There is little enough movement in it as it is. It is a silly fact that the drier my mouth is the better I am able to talk. If saliva builds up I end up dribbling and blowing bubbles. Yes, the mind boggles...
Many thanks for that littlerosie. Anything is certainly worth having a look at. The pain at the moment is only getting worse and it does not like the cold and even though I have been wearing a Trapper's hat when I have been outside today the right side of my face and ear have certainly felt it. Eating is a very nervous time. I reckon it is just as well I live on my own as I tend to sit and look at food for some time before I can summon the strength to start on whatever it is I have put in front of myself. Speech is virtually non existent - highly frustrating.
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