this morning I had a call from my dad, the pain is now so unbearable for my brother he actually broke down and made dad take him to the A&E last night. after hours of waiting round they have sent him away, just really dont want to know it seems, nothing they can do for him, told him he may have a mouth infection, and have said come back for some tablets you suck and gave him a letter for GP. This morning my brother has disappeared, we dont know where he has gone, he broke down last night in a way my father says he has never seen, i pray to god he wont do anything silly, but knowing how bad this is affecting him its something that is plaguing my mind. This morning I am going to my dads and colelct up this letter they have given, and the sweet tablets. My concern now is also if come thursday he goes for op and he does have a mouth infection that they will then say cant operate. I am not sure he can be left another week in not only this physical pain, but the emotional anguish too. I am totally stunned and sickened by what seems like a lack of caring or understanding from the health service. His experience has been a line of cock ups from the start, all the things I read here that should be happening don't appear to be, they have even used the """this is your own fault""" stance on him now, got that out of him on Sunday.
I am normally quite a mild mannered person, i think today that will all fly out the window, this is a serious complaint, not a stubbed big toe!!

Today I will bug and call everyone I can concerned in his treatment till start getting some answers and some help

Hope you all have a betetr day then I am so far

Michelle

Michelle, I don't blame you. I wouldn't rest until I got to the bottom of this myself. Let me tell you one thing, MANNERS, they can go right out the window when it comes to this. You can't be nice to them, I have noticed. You do what you have to do to get the answers you and your family need. Let us hear about you and your brother. I pray that he is safe....Always Vicki

thanks vikki,

after a really really horrible day, of runing around trying to get some help I have actually gotten somewhere. It is so so difficult when you are not getting all the information, and or what you do get is 2nd hand, men especially brothers can be so stubborn!. But anyway, trotted of to the GP (the regular doctor) this morning and left the note the hospital had given to be taken in to him the night before just to let them know that they ha administered freddie with a morphine shot etc.. I asked the possibility of seeing the doctor on Freddies behalf and the receptionist didnt hesitate in saying come back at 11.15 and doc will see you, if you know anything about getting an appointment with GP in London, you would understand why I was so gobsmacked at that, left there and trotted onto the hospital to pick up the antibiotics they had prescribed for the mouth infection, whoooohooo only had to wait 30 minutes which must be world record, so i was on a roll!! decided to pop into PALS who are like a kinda complaints dept and speak to them about things... Did that can't say that i left there any further forward but for me personally it helped some to just express how horrible this whole situation was, buck was passed as it normally is, but least they listened. Of I sped again back to the GP walked into the waiting room and freddies name was flashing on the screen to go in, the doctor I met was very lovely and caring, and i could see in his eyes he did care, he told me that he had seen Freddie on the first appointment and he was also upset that things was not moving as quickly as would like, I admit i broke down big time and used half a box of his tisues, but he was very understanding and wasted no time in writing out a prescription for morphine patches and said if this dont help please come back. I asked if was allowed to take painkillers with these patches and he said freddie should carryon with the co codrazine (think thats what they called) i mentioned the solpadol that Pauline had told me about, and Doc agreed they would maybe be better especially as they are evervessant (whatever that means) Went and picked them up and took them to my dads house, set them up in one place al together, because its becoming like a chemist shop at their house, and left my dad with all details of how they are to be taken.

dad is struggling very hard with this, bless him hes trying his best, but sometimes he do tend to say the wrong thing at wrong time. like he did to me that morning saying freddie have disappeared, turns out he called out he was going work... grrrrr and cos he didnt take his work boots my dad has thought the worst, but then again he was with freddie last night when freddie ran out of the hsopital and broke down in a corner and had to haev nurses come take him back inside. i have spoken to my dad gradually giving him lil bits of information, as much as i think he can take, that this is just the beginning dad, this isnt going to be the case of an op and everything will be hunky dory, and that this could go on for some time. I think he needs to know, and I do think he is taking it in.

rang the hispital at kings cross in afternoon who are looking after Freddie and spoke to the surgeons secretary she wont tell me much because of patient confidentiality etc.. she got a bit shirty at me at one point saying how she felt the time takign for this to be dealt with was rather quick she thought, I pointed out its ok to think that unless you are the one with something growing in your mouth and in agony!! I thought oh oh this is going to turn into an argument, but it didnt, she said that he cn come down to them at anytime they open 24/7 and also haev daily clinics where he can get help from the mcmaillian nurses etc.. I am thinking that a lot of this is boiling down to freddie being in denial, he isnt taking it all in when hes being told stuff by hospital.

have worried all afternoon hoping he did infact go work and not somewhere else, he was late home, I called to just go over things with him about the meds and he wasnt home, so I said would call back. 5 minutes later my phone rang it was him, i have never heard him sound so well since this started, he ACTUALLY was prepared to sit and let me explain the meds and how to take them etc.. he asid today he feels so much better and admitted that things ahd just built up adn built up inside of him the pain was very bad, the mental anxiety I think greater and last night he just snapped, but said it did him good to snap and get it out. He let me sit and speak to him for almost an hour, i hope what i have told him is right, eeekkks.. the lumps hes getting inisde his lwoer lips etc is prolly ulceration caused by the cancer, that after his op we will try an get the problems with his teeth and gums sorted out, thast what seems to be paining him most. he asid today he had hardly any pain, i think it must be the morphine injection he was given at hospital, but he did say it amde him feel weird and he actually got up in the night and could see my dads friend lol standing ironing in the kitchen, that made me chuckle especially as neiterh my dad nor his friend have ever picked up a iron in their lives. he feels so much betetr today that he has said he may only put the morphine patches on if he feels he need them. He has been to work today, but has promise me he will stop now and give himself a few days before op to relax and stuff, i told him want him all fit and stuff for op and not to risk getting a chill or anything working, and hes AGREED and even AGREED to let someone go to hopsital with him when he goes in.

So what started off as a rotten day has ahd quite a positive outcome, just hope this keeps up and he keep his spirits high cos i do think that helps, i know that his willingness to share with me tonight and talk about thinks has helped me oodles.

I have told him about you guys, and i hope at some point I can persuade him to come get his bum on this pc and read the posts and know people do care and do understand what hes going through..

much huggss

Michelle x

Phew Michelle - what a day you have had! I'm in need of a lie down just READING all you have been through. You sure are a sister in a million. Thank God things seem to be taking a turn in the right direction and your brother is coming to realise that he has to listen to you and to the doctors. We all react to this THING in different ways but the bottom line is we have to meet the 'medics' half way if we want to get on the road to recovery - they are spending their lives trying to beat cancer, just as much as the victims are. You are so right to try and encourage your brother to build himself up before his operation, which is easier said than done. It's the very time when you are told to eat all the stodgy and fattening foods but you can't eat a thing because of the anxiety that this illness brings, plus you wake up umpteen times in the middle of the night with your imagination running riot just when you need all the rest you can get!

Hopefully now you can start taking care of yourself a little bit - you need your energy for all the hospital visits.

We are all here for you and for your brother if he
wants to """sound off""". It's so hard to watch someone you love having to suffer and particularly hard for your dear Dad. I hold you all in my prayers. x