Hi Pete, I wonder why people have flaps made from differing areas of the body? when Harald was admitted yesterday (for surgery today) they HAD said they would just take muscle and soft tissue from the right chest wall, and then they said they may take abdominal muscle to build the flap and "to fill the big whole" that will be left after they remove the tumour. What I dont understand is why, if he is having a hemisubmandibulectomy that a bone is not going back in there, but they said that bone grafts often fail and then it means going back to surgery etc. They said they could do some more facial reconstruction at a later date down the line. What gets me is they are banging on about him not being very fit, but apart from the obvious, he is fit as a fiddle. Im hoping and praying that today will go well for him - I will not be seeing him until tomorrow morning. I think today is going to be a very long day... will try to keep myself busy. Have friends coming over later.

the only part of the histology I know so far from the incisional biopsy is SCC T4?N?M.

I will check in later. Many thanks all.

Judith xxx

Judith-Best of luck today for both of you. Try to remain calm. Believe me, I know how hard that is but the more relxed YOU are, the better for your husband. Take a deep breath before you go in to see him after the surgery. My husband didn't look as bad as I thought he would. It wasn't pretty but it wasn't Frankenstein either!
Sue

Judith
The care at the LRI either in ITU or HDU is brilliant, he will be well looked after. The swelling etc will subside over a week or so. The drains, tubes, etc all look daunting but over a few days they will become less.
My nephews aged 13 at the time came with my brother to see me most nights, so if they could do it so can you.Look forward to hearing an update from you tomorrow.
Sunshine.. love and hugs
Helen

Thank you Sue and thank you Helen. I did take a deep breath before I walked in the door the first time I saw Harald and it wasnt half as bad as I had anticipated. As you said Sue, it wasnt pretty but wasnt Frankenstein either. Im so grateful for your support. Helen - Wow - so you were a patient yourself? and in LRI? How are things now for you? I must admit the Kinmonth Unit at LRI is spotlessly clean and the staff are wonderful. Do tell me more if you are able, about your own experience. The following is my little Blog that I wrote immediately post op Day 2 and Day 5 -

DAY 1 POST OP

When I walked in Harald's room the first time after the operation, I had so many butterflies inside me, not knowing what to the expect, but although he has had such major surgery, he looks fantastically well. I think even the docs are surprised. Facially he is very swollen - he has had half his jaw removed, about 6 teeth, a bit of pallete and a small piece of tongue from the back, and all the lymph nodes from the neck. I tried to count the staples he has from ear to ear and under the neck and I guess there are between about 35-50 (couldnt see the ones underneath but did count up to 32 (16 from each side). He has his tracheostomy which already he has been encouraged to cough through and get up all the poison on the fags over the years and he seemed to do that quite well. I dont know what I expected to see - but it was a hell of a lot better than I thought it would be, and apart from all the staples which will fade into a neck crease scar, there are no visible signs on the outside of his face that he has a graft of skin and muscle in there STILL attached with the blood supply from the chest wall, so its all been tunnelled up from inside of his chest and floor of mouth to the inside of his face. Incredible to say the least. He has his PEG feeding tube in place that looks very easy to use and thats full of nutrition and he's on a morphine pump as well as having liquid painkillers and antibiotics in the back of his hand via injection. He has 4 draining bags from various places and a big pad over his right chest where the muscle was taken etc. Bless him - we had lots of funny conversations with him using the white board - he still has his sense of humour and can smile a little but his lips are numb, maybe he has a local pain block in his face too, I dont know. Going later today to see him and take all the emails his friends in Germany have sent. I can email them now using an online translating programme which is great. and then -

DAY 5 POST OP

Harald is up and about with just one chest drain in and the PEG feeding tube (plus all the neck staples). He is doing really well and the doctors have said that they are amazed at his progress and has had the best results so for, from an operation such as his. I know its early days so am not counting our chickens before the are hatched etc. I can only think about one day at a time. (Im still on sedatives but they are helping).
I think he gets very frustrated with not being able to speak at the moment but we are managing the best we can with a white board and pen. I think the Morphine (now being administered through the PEG is accumulatively kicking in plus lack of sleep as he was very grouchy today - nothing I could do today was right) He has been moved to a different hospital room and it overlooks a very large chimney in the city of Leicester (part of the old hospital actually) and Harald was convinced that it belongs to the crematorium, and he is convinced that he is getting closer to it, and the next conversation about the chimney is that it must be part of the gas chambers of the Belsen concentration camp........ so I think this is the Morphine speaking...........

I will check in with further progress but thank you to Liz, Sue and Helen.

Love to you all,

Judith xxx

Hi Judith,
It certainly sounds like Harald is recovering really well.
Hope he continues to improve as the days go by.
Gabriele

Judith-I'm so glad you posted. I was wondering how everything went. Your husband seems to be doing well-you also. The scars from the staples will hardly be noticeable at all in a few months. You will hear alot of interesting things from your husband's imagination due to the morphine. I had to write some of it down because mine doesn't remember any of it. He kept thinking that he had been kidnapped. Maybe if he had been I would have gotten more rest. He even took to calling me at 5:30 am to see when I was coming to the hospital. He didn't know if it was day or night! Those drains are something aren't they. Well, I'm so glad things went relatively well for you and tell Harold to keep up the good work!

Sue

Judith
Am so pleased it went well.
OH I remember that view well.. A large flat roof and the hospital incinerator chimney.
The staff in the Kinmonth unit are good.
Will post more later. Must go and find my husband some breakfast.
Take care.
Sunshine.. love and hugs
Helen

Thank you Gabrielle, Sue and Helen, thats very kind. Helen, I will post later. Im going to the blood donors today - Harald had to receive blood during his (2 units) and I am rejoining again. I didnt think I could give as Im diabetic but Im not on any medication as Im only borderline and they said they would be pleased to have my blood. It just makes you think doesnt it, what would we do without blood donors? I just keep thinking of that pebble thrown into a pond, and how far-reaching the ripples are - so many consequences........ Thanks all for your love and support, will be back later tonight. Glad I got the story sorted about the chimney! Im just going to print off some more emails from his friends in Germany for him to see. I cannot speak German and they cannot speak English but Ive found a great translation site that is a treasure for communication!

Later,

Love to all.

Judith xxx

Judith
How long as Harald going to nil by mouth, (food wise it was about 6 wks for me, I seem to remember I was allowed to drink water though) The PEG is easy enough to deal with, and I hope his tracie is out soon.
I was off the morphine by the time I got the room 'with a view', my graft was from my arm and they had used a total nerve block on my arm which lasted quite a few days.
Also it's good to hear you a lot more upbeat in yourself.
Sunshine.. love and hugs
Helen

Hi Helen,

It will be one more week that he has his trachy in, but Im not sure about how long nil by mouth. When I was there last night, he had just given himself a milk shake type feed (small bottle as a bolus feed, I believe) straight into the PEG, but he did indicate that soon he would be able to drink one of those with a straw. The problem with the hospital is there are never enough doctors around to talk to and Ive made several requests to see one just to clarify a few things, so I must press that point about wanting to see one, as initially when H got his diagnosis they had said he would have the PEG for 3 months, then another doc said 6-12 months and then in that same consultation, he said it could be permanent, so I really dont know. He does look amazingly well. The right side of the face is still swollen where the graft is, but its only one week post-op. He indicated last night that he has been told he may have a slight chest infection so they will be treating that with antibiotics through the PEG. Helen - what happens when they take the trachy out? do they sew up the hole? Sorry, I know it must sound a silly question and also does a persons voice sound rough for a while after its out? I will be there for both visiting shifts today plus blood donors inbetween so I expect I will be shattered tonight but will still check in later on. Thank you Helen.

Judith xxx