Hi,
Today was the start of my second week of RT.
I woke up this morning to find gunge stuck to the side of my face. Not so unusual as I drool alot during the night but I knew from the texture this was something different.
Got to the mirror and saw that a fistula which had developed a month or so ago and had since healed had started to leak again.
Mentioned it at RT and saw the Doc after who took a swab and gave the envelopes to go for bloods tomorrow.
My eldest son called round tonight, we were sitting talking and the back of my throat felt thick. I held my nose and tried to swallow and we both heard the tell tale sound of air going in somewhere. I knew straight away, I got a drink of water and as soon as I took a drink, it came pouring out the side of my face!
After the first operation to remove and replace my jaw (as most of you are already aware) I have had two operations to try to heal the wound site.
I am now truly pee'd off, sick of it and worried. At the moment the hole is about the size of a sweetcorn kernal.
Is it the RT that has made it open again, is it going to be a problem continuing with RT. I know I have had to wait this long before treatment because the RT Doc said that if he gave me RT with an open wound, it would cause great difficulties closing it again.
I am now truly scared. I have my monthly appointment with my consultant tomorrow but this is after the RT appointment. I don't know if I should say I don't want treatment until I have spoken to him. I also have the most god awful earache!
Is there anyone else that has had this problem with healing. If so what did you do, what happened?
SusieR

Update-
Saw the RT doc this morning and he was very concerned about my face, he suggested that I would probably have to stop RT but go and talk to my consultant first.
Saw my consultant and he agreed RT has to stop but worse is I am now going to have yet another operation to close the wound again.
The plastics guy is on holiday and will be back next week so I will see him then.
Consultant said this op will make a hell of a mess of my face. Can't believe it will look any worse than it already is. I'm also worried where the next graft will come from. So far they have used my leg, breast and arm. It was mentioned that this time they might use my shoulder. That would be a real bummer. I have a tatoo from the base of my neck and over both shoulders. (Have had it for years, Celtic design and I'm very proud of it) What a shame if that get destroyed too.
I have to have another scan too. Concern if the cancer is back or if there is a bit that was missed which will now not be sorted by RT. I think there is something there, the taste and smell from the wound this morning made me vomit. It is worse than when they took away the initial tumour and my jaw.
Now you will understand why I said yesterday I was peed off!
I'll update this post again next week when I know more.
SusieR

Dear Suzie,
Cheer up. I received a lovely saying and I think it applies to all of us. and am sure it will help you tide over your frustration. It goes like this:"Never think about the PAST - it only brings tears.Dont think about the FUTURE as it only brings Fear. lIVE THIS MOMENT WITH A LOVELY SMILE - IT BRINGS CHEERS.

Suzie - why it and think of what may happen as it has not happened as yet. Just be positive in thinking that you wilkl handle what ever problem comes your way when the time arrives - but till then smile and live a happy carefree life. I know it sounds very easy - but thats the only way, I have managed to keep my sanity.
Lots and lots of love,
Ananth

Poor hun... Enough's enough now! GIVE SUSIE A BREAK!
Just when you're geared up to knock this thing on the head you get thrown a curve ball.
I'm so sorry, it really isn't fair! & all this waiting in between is excrutiating!
You're in my thoughts i promise!
Fingers crossed!
Michelle

Susie

I think there are some lovley words from the others to your post

keep going
Dave and Sue

Hi Susie
I havent had the pleasure of any RT?Chemo yet and even though I knew it was scheduled it wasn't vuntil I recieved the appointment notification that it all came to me and at the moment I am feeling a little stund, so I will keep in touch if that is OK so I can compare notes so to speak on my treatment which begins on the 23rd( I have to have scan first as my kidneys are a bit on the crook side)so they may have to modify the Chemo treatment.
Hang in there SusieR I am thinking of you down here in Aus.

Hi Trev,
very early days for you -and not nice ones either.
I had a full neck dissection and right tonsilectomy Oct 2004 followed by 33 sessions of RT (no chemo)which finished at Christmas that year. I too had an unknown primary which was worrying but 2 and a half years on (approx) everything seems to be going well.

Good luck to you and your wife
cheers Tony K

Poor you Susie, no use saying dont worry, we are all worried for you. Just hope everything gets better. But just think, no more chapel hat pegs.

Hi SusieR

Really sorry to read that things have not gone well recently, you sound like a real fighter.

Not sure if this will help, but one of the guys that was recveiving treatment at the same time as me had a massive wound in his face, he was put on to hyperbaric treatment.

I beleieve that it can help the healing, just a thought hope it's of help.


Regards


Tony

I'm sorry I have no wise words to offer - just a cyber hug.

Hi again Susie, have just got back from 9th r/t session. I was thinking about you all the way there and I am sorry if my response was flippant, I didn’t mean it to be. I cannot ever imagine what you must be going through to be told by your consultant what you have been. I have always traded on my looks, I can even remember doing it when I was little – see my pic. The ageing process is bad enough. I do hope you get through the wait and get some good news. Meanwhile continue your good work on here and keep us smiling.

That's a real shame Susie. No wonder you're pissed off. I had hyperbaric oxygen therapy to aid healing at one point and it seemed to help. I'm heavily tattooed also and would be gutted if they started hacking at my ink. Hopefully there will be another place they can take from rather than your ink. On a lighter note,I was having blood taken in hospital once and the nurse moaned that she couldn't see the vein properly because of the tattoos. She was quite stroppy about it and I was quite stressed so I looked at her and said "if I knew I was going to get cancer and have all this blood drained from me I wouldn't have had tattoos there". That shut her up. If she hadn't given me a bad attitude she wouldn't have got one back. Highly unusual for the top quality care I normally got at my hospital. Hope that diverted your mind for a few seconds. Keep your chin up. Hagg.

Susie, worried about you, what's happening, you alright??

Ange

Hey Susie,

I've been thinking about you. Hope everything is going ok.

Hugs,

Joy

Hi Susie
Missing you and worrying about you.
When Trevor and I first joined the website, you were a great source of inspiration and it was shocking to hear of your setback.
I really hope you are hanging in there and that things aren't too tough.
Please find attached, lots of love and positive vibes.
Cheers
Deborah