Reconstruction

Good evening Laura, im so pleased that you have been offered further surgery to remove the scarring and make your life more bearable. I have had 3 big surgeries with the last two lasting over 13 hours which i know sounds frightening because of the length of time, its just reconstruction surgery involves a lot of intricate surgery especially with a free flap as its all got to be plumbed in ,so to speak. These surgeons are very experienced in reconstructive surgery and will make life a lot easier for you and hopefully allow you to be able to eat properly again and be pain free. I just think that its like when you go to bed and wake up in the morning but of course you will feel a bit groggy because of the anesthetic and the surgery. All of my reconstructive surgery worked out well and i made a full recovery. I wish you all best for your surgery, you can do it x

                                                             Chris x

Thank you so much for replying. Your message has really made a difference. To actually hear from someone who has had reconstructive surgeries. And successful ones. I'm so pleased it all worked for you. I just had such a dreadful time after my second surgery- but I wasn't prepared then. When they say you have cancer, you just want it out and don't really listen to the details do you! This time, I'll make sure I'm prepared for what's going to happen. 

I have a meeting with the anaesthetist Thursday and will go armed with questions.

I'm so grateful to you for taking the time to reply. Thank you

️️ 

Hi LauraJane. So sorry to hear what you are going through. When you are in pain things can be unbearable and make you so miserable. Fingers crossed that the surgery will resolve the pain issue and make life much happier for you. I have had 3 big surgeries for jaw cancer and reconstruction of my upper jaw using a titanium bracket so understand your concern about another lengthy surgery. Like Chris says it is just like dropping off to sleep and then waking up again with no time in between. I have found it pays to be proactive when in hospital. Ask questions, get moving and if in pain ask for pain meds. You are more prepared this time after the experience of your first surgery and that makes a huge difference. 

I have significant long term side effects from my surgeries including not being able to chew so needing to eat a pureed diet. However I have found that as I have no pain that is a huge plus and so I am not held back from doing things I want to do. With your pain issue resolved you should be able to get back to enjoying life again although it might be a 'new normal'. 

I've got everything crossed for you that the surgery is a complete success.

Lyn

Thank you so much for your lovely reply. I'm sorry about all that you've been through. It sounds like a truly horrendous journey. I'm so pleased you're not in pain now. That s all I want really. I can handle the soft food diet, I just want to be out of pain. 

I'm finding it very reassuring to hear from others who have had long surgeries too. For me, it feels so out of the ordinary but I guess these surgeons do it all the time. 

can't I ask, were you in hospital for a long time after? 10 days has been suggested to me- which I know of a good thing, it means I won't try to hoover. Still adds to the anxiety though with a daughter at home. 

thank you again for replying to me. I'm very grateful 

Laura 

xx

You are very welcome, you are right in what you say about just wanting the cancer got rid off, i was very much the same at the time although forum like this were not around as much back in 2008. Great advice from Sophie66 (Lyn) as always. Please feel free to re-post in this group if you need further advice. Good luck.

                                             Chris

Hi Laura. For each of my surgeries I was in hospital for around 10 days. The first 5 days were in ICU and the rest on the general ward. It gets a bit boring in ICU after you start to feel better so be prepared and take something to amuse you. I used to watch TV but the offerings were not so great. Your phone will be your lifeline for entertainment although I did get Audible but found that I used to drop off to sleep while listening to the story being read to me. Be proactive in ICU and and ask to get out of bed as much as possible even if you don't feel like it.  The sooner you get going the sooner you get out of there. The physio would come around every day and take me for a walk around ICU. I did feel very tired for a few days after the anaesthetic and used to sleep a fair bit but that wears off. I used to walk around the hospital wards as much as possible to get going when I was on the general ward. 

You can do this.

Sending my best wishes

Lyn

Thank you so much. I will be very proactive! I'm dreading 10 days away from my daughter and the dog! He's my best friend  I'll do everything I'm told to do! 

 such great advice and again, so helpful to hear from someone who has had such big surgeries. 
You're so kind. 
thank you

Good Evening Lyn, 

     I really hope you don't mind me messaging you again. I wondered if you minded me asking you a couple more questions? I don't want to drag up awful memories for you so understand if you'd prefer not to. 
     I met with the anaesthetist on Wednesday and it was all a little alarming. Apparently I'll have a feeding tube etc... I have countless worries, but one that you may be able to help me with might sound silly. I have a 14 year old daughter who since my cancer suffers with dreadful health anxiety she messages me all the time. We've never had a day in 14 years without each other. She will be fine, she has her dad, grandma and aunt ready to support her- but how soon were you with it enough to be able to send a message or two? Can I expect to be able to be with it enough to ping her some messages the day after surgery? Pain, I can deal with. It's the grogginess after a 10 hour op that I don't know about. I'm curious about waking up in ICU, I've been warned I'll ill have tubes coming out of everywhere- but wonder how it compares to normal recovery? After my tumour removal, I was in a lot of pain, but was up and  about very quickly. 

like I say, please don't feel you have to reply. And I hope you don't mind the questions. It's so daunting. I wish they'd done it when they took the tumour out. Get it done in one go! 

thank you 

Laura

Hi Laura. I felt well enough to receive phone messages and send text messages by day 2 in ICU. However I did have a temporary tracheotomy so couldn't speak but fine with messaging. I had the tracheotomy out before I left ICU but it was a bit daunting not being able to tell the nurses simple things. I got good at signing things like 'I am too hot'. Also had a small white board to write things on.  However you may not be having a tracheotomy. Yes I had tubes everywhere, naso gastric tube, catheter as well as the trache. All of these were removed except the NG tube before I left ICU. The NG tube was taken out before I left the hospital. I did not have any pain although they were putting pain relief through the NG tube. I left the hospital with painkillers but did not need to use them.

If you have any other questions I am happy to answer them as best  I can. Everyone is different so your experience may not be quite the same as mine. The nurses in ICU were fantastic and looked after my every need. 

It is good that your daughter has such great support from the family. My grandaughter who was 5 at the time came to see me while I was in ICU when I still had the NG tube in. She wasn't put off one bit which surprised me. I told my daughter not to bring her as I was afraid it would scare her but she wasn't phased. 

Lyn

Thank you so much Lyn, 

     This is really reassuring. It sounds like your surgeries were far more invasive than mine will be as there is no bone work. It's just this massive scar. They also think there's scarring inside which is equally as bad and the surgeon wants to try and get some of the nerves untangled. I already have some facial palsy and synkenisis as well as freys syndrome. I've been told to prepare for worse facial palsy which may or may not be permanent. I'm ok with that. If I can be out of pain. Or at least in less pain. 
With the support of people on here - you very much so- today has been the first day I've had a wave of excitement about potentially having a better quality of life ahead rather than this awful feeling of terror that I've had since they called with the date. 
Thank you so very much. You've made a big difference to my mental health this week!