Hi Folks,

Sorry haven't been around a few days things were quite manic last week, my sister had some months previously booked us a few days away, we seriously planned on not going because of all that was and had happened but after the stresses of Thursday thought the few days away would help us recoup, relax our minds and prepare for freddie op this week. And we were only 2hrs away so could return at short notice. Weekend was ok but still worrying and phoning in 2/3 times a day to make sure all ok, it was although freddie still in a lot of discomfort. Got home Monday and on Tuesday (day before freddie going into hospital) he decided to come stay with me overnight. I wont pretend it was easy not to cry each time I looked at him, but his spirits where quite high and he was up till 3am playing online cribbage!! He fancied a beer and though maybe not a wise thing I let him, I felt like why deprive him of something that he may not be having for quite a long time. His appetite is mammoth!!! I don't know where he puts it all, I know its hard for him to eat but he manages to eat loads, nibble nibble ) He wave abuot the solpadol tablets, pauline told me about, he says of all the meds hes had for pain they have helped him the most, thank you Pauline.

I left for work Wednesday morning, hugg him and tell him love him and rushed out of the house before the tears started, my sister took him to my uncles who freddie had decided he wanted to go with him to hospital. When he got there they ahd no bed for him but did eventually find one, ina ward with 3 other men all in for ops today.

Spoke to him on the phone and he seemed very anxious and down, but insisted he didnt want me to visit that night and that he was going to try and sleep.

Today has been so hard, my stomach has been churning all day. It was a big relief to speak to the nurses in HDU who say that he was back up from surgery in pain and sore but that he was fine and she even said he is talking!!!

I must admit I had all these illusions of going there and being horrified by visions of him hooked up to machines etc.. My sister and I travelled to the hospital, via train.. yuk when we arrived at HDU he was awake and could talk though a bit hard to understand because of the oxygen mask. The nurse gave hima big magna doodle to right on, I didnt relaise before what a great speller he was!!

He is in obvious pain, and still a bit drowsy, his neck is heavily bandaged. from what he has said/written they took away 1 lymph node, he says feels like half his tongue is missing but didnt look as he cant open mouth too well. I think from what he was saying that the doctors can only make a real proper diagnosis on things when they actually operate, they have said that there is a 20% chance he will have to have radiotherapy, but that hopefully, all going well he will be out of hospital in a week and maybe even back to work in a month, it was a much better prognosis then I had expected but I am not gonna count my chickens as early days still.

He managed to have a joke, got stubborn about not have a tube down his nose to feed him from tomorrow. Doc came in and was pleased with his recovery progress and said hopefulyl he can go back to his ward tomorrow.

I know early days but I am so releived at what he has communciated tonight, I am keeping everythign crossed his progress continues well, and hopefully he wont have to haev the radiotherapy. I am hoping that the time he spends in hospital he will speak to other patients and learn more about his illness, he is still very naive about things.

I will surely sleep better tonight and be back up by his bedside tomorrow.

Hugsg to all

Michelle

p.s. a question, lymph node?? am i right in thinking thats a gland thatstores all your defenses and why is it that with oral/head cancers these are removed?? I am a bit confused. Are they only removed if the cancer has travelled to them??

Hi,

So glad things are going pretty well for you both - I can imagine what a tough time it is for you; I remember what my family went through when I was in for my surgery :worried: .

In answer to your question about lymph glands, yes they are involved in your defence mechanism - I had both neck glands removed, purely as a precaution: if (God forbid) the cancer spreads, it is via the lymph, which is why they are sometimes removed.

For me, it was a similar picture with radiotherapy - purely a precaution, to lessen the chance of any remaining tumour/spread.

In short, then, I wouldn't get unduly alarmed about taking the lymph gland; it hasn't affected me in any way (other than that now, if I get a cold, I don't have the misery of painful enlarged glands in my neck: some small benefit! )

I hope all continues to go well. Thinking of you, :lol:

Janette xx

Michelle, You must feel like the weight of the world has been lifted. You have been so upset and worried that I have been concerned about YOU. Freddie is going to have some really bad days ahead of him. Pain wise. It was that way for me. So be prepared. As for the lymph nodes, I am like you, why do they remove them we need them. I had all mine removed with this last surgery. Really scares me, for this is why it is so common for the cancer to go to the liver and lungs after surgery. This is my biggest fear. I have prayed and prayed for your family. I know this has been so hard on you. Thank you so much for letting us know how things are going. Please keep us updated on Freddie. Freddie you have friends here and we are all pulling for you....Always Vicki Lynn

Hi and thanks for replies,

Am a bit downhearted tonight, just about rady to burst in tears, am so confused... Tomorrow I MUST speak to the nurses cos somethings arnt adding up... but... visited this afternoon and itno the evening and Freddie seems well in himself physically, emotionally not so much so, he has said that the doctors have said the cancer they removed from his tongue was """deeper""" than they had thought and he was saying something about them thinking it could be a different kind to what originally thought i remember him using the word aggresive and that scare me, and they are testing all what they took away in his neck. i am prayng to god it didnt spread to there and am just hoping that its a routine thing to do to check what they remove even the lymph node, and that maybe they have removed this because it was a bit swollen and the tongue cancer being deeper they just want to take precaution, my mind is mashed trying to figure things out, so am definately asking tomorrow, i filled up when he said if its moved to roof of mouth and stuff like that he aint going thru this..

Also, when he showed us his tongue he was hurting inside like waiting for a reaction from us, it isnt pretty i would guess that about 1/3rd has been removed but in honesty unless he pokes it out you would never know, but I do understand it must be horrible to lose such a personal part of you. He did mention something about who would wanan kiss him now...sighs...

We try to stay cheerful for him, he seems ok but i think he puts on a little act for us but his eyes tell a different story, it pains so badly to even comprehend what must be going thru his mind.

He stood his ground this morning on his cathetar it was hurting him like crazy and he said if the nurse wouldnt remove it for him he would do it himself, and thankfully teh nurse removed it.

They where saying that to feed he needs a tube up his nose, he has said that would make him physically heave and be sick, so is tryign to eat normally through his mouth. He isnt doing too bad, hes finding ways of getting it down and although its not most comfortable, hes tucking in best he can, gonna take him a knicker bocker glory spoon in tomorrow so he can get it further back..

He has never been a big veggie eater, he eats them but not excessively but for some reason hes really enjoying his veg even asking us to bring him in mixed veggies from the chinese takeaway for tomorrow, maybe its a sub conscious thing him thinking they are good for you.

He is having some medicine thats the most gross tasting stuff, oh yes, on his insistance we both(my sister and i) had to dip the tip of our finger in and have a taste. Was foul, so run out to the shop and got a nice bottle of strawberry water and a bottle of ribena and turned his nasty medicine into a little berry drink which went down much betetr for him.

He is still in HDU but its because they have no beds on the regular ward, hopefully they will get that sorted out soon as it is very small in hdu and although freddie is up and moving about, going for little walks down the corridor for his exercise, and so is the otehr man in there, there is a lady in who looks very very poorly and it dont feel right chatting and visiting when she is so sick.

He loved the portable dvd player we bought him, and have given him a good supply of movies to watch, before we left we snugged him up with his earphones all his bits around him watching a film called Seabiscuit about a race horse, he loves horses have been brought up with them and has one of his own who he is missing and cant wait to get to see again and take him out for a drive..

Well better get my bottom into gear and into bed, very long day today leaving home at 6.30 for work and not geting in till 9, I am totally drained both physically and emotionally, so a hot choccie for me and beddy byes ready to do it all again tomorrow and hopefully speak to soemone in the know who can help with the total confusion currently have over whats happening.

huggs to all

Michelle xx

ps. how do you get your little picture to come up next to messages??

I think today has been the worse day of my life!!!! rang this morning and Freddie was doing fine, so much so he decided he was going to have a bet on the horses and sit in the day room and watch the racing on tv. An ex girlfriend was going up to see him, and i knew that seeing her would be a big step for him with regards to how his tongue was looking because I know it is bothering him.

My sister and I set of for hospital at 1.30 only to find we couldnt park at our local train station because West Ham was playing at home and the car park was full, so had to drive all the way back home and get a lift to the station, the train ride took ages and we didnt arrive at hospital till 4pm!!

On the way into the hospital we caught Donna (the ex) coming up, she said Freddie was really doing well and how surprised she was, and things wasnt as bad as she had envisioned, she said he made her sit and watch the races on tv ate all her chocolate, and was all yipee doo because he won some of his bets... She also said he had just been moved to a regular ward which was good news...

We walked in the doors very happy what would transpire in the next few hours was nothing more then heartbreaking, and some things in my opinion disgraceful!!

within 30 mins of our being there Freddie started to get some excrutiating pain around his neck area, we thought it could be from where the drain was going into his neck was maybe moving as the sticky stuff that had been used to hold it to his skin had come unstuck, the pain was really bad, I spoke to a nurse and told her and asked if she could restick it and help with his pain she said yes but never bothered to come do it.

I spotted the duty doctor coming in, he """popped""" his head round the door spent a few mins with a patient who was being discharged and then I heard him ask the main nurse if everything was ok and she said YES!! I couldn't believe it Freddie is sat in agony, the man in the bed next door was waiting 1.5hrs to have his BP done and she was telling the doctor all ok!!

I hurried up the ward to the doctor as he was leaving and asked if he could come see my brother, to be honest i don't know why i bothered for all the good he was (I am sorry to rant but I just cant believe the flippant attitude) He come over, we explained the pain, like it needed explaining Freddie was in agony, he pulled the large dressing round freddies neck out a bit, causing him more pain in the process, looked at where the tube goes in and said, """oh well its clean there dosent look like any infection or anything""" the wound in freddies neck is from ear all the way round past his adam apple, how on earth he could make such a digonis by peeking down the side of a huge dressing i wil lnever know, Freddie asked but doctor whats causing this, the pain is a pain i have never experienced and its come on all of a sudden, why is it that this wasnt like this day of op or yesterday and has happened now the doctor replied """I dont know I wasn't here yesterday""" He said if you want the dressing off you can, we said but will that make the drainage tube move because we really thought thats what it was causing the pain he answered """I don't know its up to you""" Freddie said Doc your the doc im asking your advise here, the doc just didn't seem to want to know, I think uncommital was an understatement he left prescribing him 2 painkillers..

Up till this point Freddie had not had any extra pain relief other than the regular meds he taking which I don't think are mega strong. The doctor went Freddie took the 2 oval shaped pills, by now he was crying big time with the pain, literally ripping at his head, threatening to pull the drain out because he couldnt bear the pain, he kept saying something aint right, yuo know when somethign aint right.

I approached the nurses station and asked how long would it take for the painkillers to kick in, which actually turned out to be Paracetomol!!I was told that I have an attitude!!! I was so angry and upset, I said I have no attitude am asking a question, she rabbited on if I could have understood what she was saying may have helped some, but she said they have extra drugs out back they can administer. I just couldnt believe the flippant couldn't care less attitude, Was then i heard Freddie scream out the crying even worse, there were visitors there visiting otehr patients, so i went and pulled the curtains around his bed to give him some privacy, and so that the people visiting didnt have to see a patient in this distress also, I was about to burst so took myself of to the toilet recompossed and come out. When I got back to freddies bed the curtains had been opened, my sister told me a nurse came round and swiped them open and said we dont; have patients hiding in this ward!""" My sister said look hes in pain its bad enough let alone everyone watching and seeing you go through this, she drew one curtain again with a """grudge""" and said well there the rules.

This was enough for me to flip, I walked from the ward to try and find someone I just couldnt belive what happening, I was in tears and so upset and angry, Another nurse bumped into me and asked me what was wrong, she took me into a room and I explained, she said she think I need to speak to the head nurse who was actually on another ward and she would get her.

This nurse came along and saw freddie first, All of a sudden one of the nurses become active and was running around with the sticky stuff to hold the tubes down, it only took her an hour to do it and my having to complain to head nurse!!!

When she came out to speak to me I explained what was happening, and pointed out what was said about patients hiding, because that really did get my goat, I said whatever happened to privacy, she said that the curtains have to be left open so the nurses can see down the ward, my repsonse was, """well they looked down adn saw freddie writhing in agony but didnt get up and see he was ok, no point them looking down if they aint prepared to get of their bums and do what needs doing!!

The head nurse said she have arranged for freddie to have some strong painkillers she said also that she had found out that he hadnt been a poo for 5 days and said would arrange for something to make him go..

A nurse came over with the sticky stuff, knock his drainage bottle over, yanking at the tube trying to get the old stuff off, its like she was immune to the fact freddie was in pain, so slap dash and heavy handed, its just unbeilevable, and so different to the nurses in the HDU who were absolutely brilliant, no way woudl they have let this go on.

Then she pulls out some big syringe she said soemthing about senna, so we thought ahhh its the laxative, next thing she is as good as ramming it in his mouth, Freddie is like whooooooooooaaaaaaa hang on ill do it, I dont have half me tongue and he showed her, and you know what, I don't even think she knew, she seriously didnt even know why he was in there..

They removed the dressing round his neck which gave some relief, but it soon started up again, we knew that he could have another painkiller so my sister went up to teh nurses station and asked she was then told that the stuff in the syringe was morphine and was the last he could have, to be honest we aint confident it was because, morphone makes freddie very sick and this stuff wasnt touching the pain or making him feel sick, now he was worried tho if it was morphine and he did get sick because of the pain in his neck would get worse if he was gagging, he curl up on the bed crying like a baby, was so hard... sometimes the pain would subside, but then it would shoot again, we are wondering if maybe the drainage tube inside his neck is pressing on a nerve.

At about 7.50 the doctor poked his read round the door again, knowing all that was happenign he didn't even botehr to walk over and see how freddie was doing, I personally think its barbaric and absolutely disgusting!

We had to leave visiting time was up, teh nurses were changing shift, so hopefully a more caring lot wil be in overnight, on the way out I asked if there was anyone I could speak to, I couldnt bear to leave him there like that suffering and feeling like no one cared a hoot, the receptionist handed me complaints form when I told her what was happening and said, do it, use it complain, it turned out that the doctor was just a locom in for 1 day and there would be a new doctor on at 9.30pm, she said if i rang in she would be able to put me through to speak to him.. We trudged home seemed to take forever and when got in called the new doc, he said he had seen freddie and has given him some strong pain kilelrs and these should get him thru the night, I pray to god they do, and i am going to be one pain in the backside tonight and call every few hours to see how hes doing. I hope that they take this drain out soon.

has anyone else had this??? i am so scared its somthing else causing the pain.

My dad is due to visit tomorrow, freddie has said if hes in this pain he dosent want dad to visit, so thats gonna cause problems too..

maybe I am just being over sensitive, I don't know, but the way he treated especially the pulling the curtains back and being told """patients on this ward dont hide""" is NOT acceptable, I am not a mean person, and i dont want to upset the applecart, because I fear that if complain then they will take it out on freddie, but some things are not right and i think whats happened is ALL WRONG, whatever happened to a little bit of compassion, explanation and caring, it certainly wuoldnt have gone a miss tonight!!

I am off now to call the ward make sure freddie is ok, and that they are awake!!!

huggs to you all, sorry to rant and hope your weekends are going better than ours.

Michelle xx

Michelle, Girl I am so angry about now I could just scream. I cannot believe your story. First of all. You have privacy rights. Freddie has privacy rights. Those curtains are there for a reason. To OPEN and to CLOSE. There is no way that those curtains have to stay open.I have never in my life heard of such a thing. Even when you go into EMERGENCY there are curtains. They open them when they come in and they close them whent they walk out. They are just being down right nasty to you and your family There is no way in HELL I WOULD HAVE LEFT. NO WAY!!! Because I have been right where Freddie is at. It is worse when you leave. I have been there. I told my husband about this when I was in the hospital this last time. I have never been treated so badly. I couldn't talk at all so I just laid there in so much pain I will never ever forget it til the day I die. So when my husband came up the next day, he didn't leave me. He stayed right there. He was so damm mad. They told him that he couldn't stay they have rules posted all over the ward. He said well then you are going to have to remove me yourself then. Because you let my wife cry all night in pain with a bed pain sealed to her Butt. They never picked it up and I couldn't raise myself up to move it. So I laid there with it for 12 hours. Talk about hurt...that hurt. I want you to promise me that you will go all the way to the top with this. Do not stop. Those people made a choice to become caretakers, aka nurses, doctors. We didn't make them apply for this job. So if they don't like there job they can damm sure leave. How dare they treat a patient with cancer this way. As if he isn't scared enough. I am appauled by the lack of comman deciency they failed to show. The lack of pride and honor is this. I am madder than HELL!!!!!!!!!! Give me the name of the hospital where he is. I want to write a letter in protest. I will tell them that I was a vistor and I witnessed this.....I want names of the people that told you that you were rude. Freddie should be being treated like a baby. He should be babied. He will have to do all this on his own soon enough. Michelle I am so so sorry for the actions of these morron's.. If I were you I would make sure someone was there with him at all times. As far as the pain in his neck, I have no idea what that could be. Whatever it is it doesn't sound right. Something is wrong. They should be doing what ever they can to find out what it is......Not hiding it...WOW, you guys just cannot get a break.My heart goes out to you...Always Vicki

Hi Ya Vicki

Thanks for responding but sorry if i got your all angry you need to keep that BP good I have called in the night and he has slept, the meds they gave him helped a bit. There is a phone there like a payphone you can call patients on so i decided to call that and try to speak to freddie direct because to be honest I dont have much confidence in what I am being told, its an awful way to be I know, and i know you can't tar all staff with the same brush as those jumped up lil morons yesterday, but I am so worried and FREDDIE and his feelings are my main concern right now. Anyways, I do ramble round the houses dont i? I rang the phone and the man in the next bed answered, lovely man his name is Graham, he said freddie was a bit better last night and he slept and watched his dvd player but still was in pain but it was easier he asked if I wanted him to get freddie, i didnt relaise they have to travel across out to dayroom to get to the phone, and it wasnt on wheels. I said not to disturb him, case he was comfy but as luck would have it he said hang on hes just gotten from his bed. Freddie came to phone he didnt really speak just hmmmmed for yes, he has said no visitors but i told him me and kerry will be going anyway, he dosent want my dad to go today and thats going to be a big bear bug for us, because dad hasnt seen him yet, and I know he wil ltake it all personal, its soooooooo not, its just that my dad is also very sick, he has a list of illnesses and recently had pioneering surgery, he stresses and worries and I know Freddie just dosen't want dad to see him like this because he worries about dad worrying about him. So we will have to think up some story to my dad, it surely is like having the 2 of them to worry about.

I asked freddie if they are going to remove the drain he said yes, I really couldnt get much from him cos he cant speak too good, so I ended the call and called the nurse looking afetr him. Breath of fresh air she was, she said pretty much what i already ahd gleaned and confirmed they would remove the drain this morning, she said shes just given him some more pain relief and wants that to kick in before she removes drain, i have everything crossed that will help and his pain will become less, I will call again in an hour to see how things are.

Don't worry about them geting away wih anything vicki, my back is up, they best watch out!!! somethings I know are out of their hands, but compassion and understanding aint and I will be on their cases big time.

We will try and be there as much as we can, always everyday someone will be in there, staying overnight i dont think is an option its just not allowed and in honesty Freddie wont have it again he will worry then about us, we are just a worry pot family I think.

I work full time, I have to work to survive, I am single and have a mortgage etc.. no work, no pay bills and end up homeless. I am trying best I can to sneak time from work here and there to enable me to get there for a little longer each day. It takes a good 1.5 hrs to get there, where the hospital is is a very undesirable area, not the place you want to be wandering aroud alone, especially when its dark and the nights are getting dark by 5 now. This is why myself and sister go together. She is married with a family and a hubbie who works longish hours and her youngest is only 6, so we are having to kind of fit things in around all this, making sure someone to take care of the little one, her hubbie bless him is leaving work early to get home so we can go, but he can only do so much, he needs to hang onto his job too. So really its just myself adn sister doing all the visiting and runnign around, an auntie is going up on Monday to give us a restbite, but she isnt well herself, having had and dealing with cancer of bladder. My days are starting from 6am and by time I get home its getting on for 10pm, I am trying to keep house and do chors between these times, the exhaustion is not only mental but physical too, I am not in best of health myself. Only really a few days into this and I feel i am about to crack up! But I won't I can't.. I just make sure when I am at the train station I stand well back from the edge..

Off to ring again now.

:worried:

Huggs

Michelle xx

Just a quickie before I rush out.. I got a phone call!! from me litle brother, they have taken out the drain and he is feeling a lot betetr for it, and has said its ok for dad to come up, so he must be feeling a whole lot better he says he is doped to the eyballs on morphine but they have now given him something to help with the sickness feeling. Not sure he will eat much today and he says they are giving him special milkshake drinks, probably the ones with all the vitamins in.. But.. he is still going to try and eat solids if only a little pick here and there, so i have a lil bagged packed with nice goodies i think he may be able to at least have a little nibble of each, there has been a request for a mcdonalds shake and with a bit of persuassion we got that upped to a fillet of fish as well, Am not confident he will be able to take much of it but I feel to even remind him of solid foods and if only he take a teeny morsel it all helps.

This little bit of happier news is not without incident though :banghead: the nurse removing the drain the one I had put a bit of confidence in :bomb: attempted to remove the drain, yanking and tugging, causing him to scream his head off and coudnt get it out, a male nurse comes along and gets its out first time, no pain no tugging. There is like a bead thing going into his neck which i guess the tube inside is attached to, also further down he has like a bigger tube coming out, the drianage tube. The female nurse didn't disconnect the drainage tube so was ripping at his neck and thats why it wasnt budging :banghead: It just is beyond me, surely this is something a nurse should know!!

I know this experience has so far only been comign up 5 days, but something that is very evident to me is that MALE nurses appear/are so much more gentle, caring and know what they are doing, lets hear it for the boys!!

*waddles off wondering if can specifically ask for male nurses during treatment and that after todays visit will still have a small smile on face*

huggs to you all

Michelle xxx

quick update before baord closes.. it seems a bit too soon to me but my brotehr was discharged from hospital yesterday lunch time (Monday) He had his op Thursday!! sent home Monday, I think they have done this because he is getting food down, not eating loads but he wil lalways be trying to put something down. His neck is swollen more then it has been but I am guessing this is from the trauma of the op, He is glad and happy and prefer to be at home.

He is staying with me at moment, he is being well cared for and I have all the emergency numbers if he as any problems. He is having his staple stitches removed Friday, again seems kinda soon for such a big wound.. He is going back 1st December to see what the results of the lymph nodes etc etc is.. I have everything crossed, yes even including my eyes.

Much huggs and love to you all.

Michelle xx