laryngopharyngectomy

Hi JKE 

I wanted to just say hello and welcome you here.

Three of our community champs are laryngectomees and might be able to help but I can't recall anybody here having your Mum's procedure. 

Do stay with us. There are a lot of helpful folk here.

Good luck to your mum and let us know how your appointment goes

Thanks Beesuit, it’s all been a whirlwind and we’re all worried about the aftermath, mum lives on her own as my dad sadly passed away last year unexpectedly and whilst my sister and I will help where we can we are both full time working with our own families, mums a proud (stubborn) lady and she has no one else in her life apart from the 2 of us, she’s only 62 but very frail due to lifestyle choices which it appears she’s not keen on changing. 

Oh dear...so sorry.

She will need quite a bit of post op care. Maybe you should be thinking of some sort of community nurse support when she comes out of hospital. Do you know whether she will be RIG fed permanently?

Hello, sorry it been a rollercoaster to put it mildly! Met the surgeon today, mums airway is severely compromised and they are wanting to put a tracheostomy tomorrow, (mum has since decided since getting home she doesn’t want a tracheostomy but we’ll deal with that at the hospital tomorrow morning). the tumour was only just in her airway 4 weeks ago but has almost blocked it entirely,(I didn’t appreciate how aggressive an aggressive cancer can be!) bilateral neck dissection and laryngectomy and pharengectomy possibly 1st of October, they’re also going to insert a speaking valve during the op. Biggest concern is mum is very underweight (always has been and not keen on getting her BMI above 15.5) and an alcoholic who isn’t honest with doctors about how much she drinks. My sister and I are worried she won’t even pull through the 14hour op they’re proposing. 
Not sure on the RIG at present

sorry for the essay and appealing spelling and grammar, it’s been a series of sledgehammers and I’m reeling somewhat

Hi hello from  me. Sorry to hear about your mums cancer and the difficult experiences that has a family you are facing. There’s no easy route in cancer, weight loss will happen she really needs the peg to maintain weight but that’s a subject for tomorrows meeting and the consultant, it’s a major op she’s undertaking and hopefully she will be honest with them about her issues. Good luck from me like Dani says she will need some help at home  maybe see if yiu can get that in place ready for her after she’s discharged. 

JKE said:

My sister and I are worried she won’t even pull through the 14hour op they’re proposing. 
Not sure on the RIG at present

It’s a real worry but you know I don’t think they would be risking it if they didn’t think she had a chance to pull through. Her pre op blood tests will show what state her physiology is in. They will likely keep her in post op to feed her up. 

Good evening JKE, your mum's operation sounds very similar to what i had when i had my laryngectomy, mine was classed as an aggressive tumour. Like your mum, i have always been underweight at 9.5 stone but was very healthy health-wise, i did smoke and drink but was not dependent on it plus i was involved in welding for my job as a shipwright which can also lead to cancer. They will give your mum something to compensate for her drinking so she does not get withdrawal symptoms, maybe this will be a blessing in disguise and help her to stop drinking. As Dani mentioned they would not put her through this if they thought it would be a risk to her life, i have had 3 long operations with the laryngectomy being the longest at about 14 hours,it involves a lot of people and involves two consultants along with the rest of the team. I'm now fully recovered and now weigh 10.5 stone but i am PEG/RIG reliant for my nutrition. It is of course a big worry but she will be well looked after and given the best treatment and aftercare needed to help her make a full recovery. I wish you and your family all the best, take care.

                                                          Chris x

Hi Chris, 

thank you so much for the reply, yes they’ve said mum will be on the table for about 14 hours, she convinced she’ll be able to go back to work in 6 months and that’s what’s driving her forward at the moment so I’m letting her continue with that although I have a feeling it’ll be a fair bit longer! She’s having a tracheostomy fitted Thursday as the concern is her airway won’t last till untill the 1st October for the main op, they weren’t keen on her going home and waiting a week for the trachy but mum wanted to take time to absorb the sheer amount of info we’d been given in a very short space of time! She also having her RIG fitted on Monday but she’s already said she won’t use it untill she’s unable to swallow. Thankfully I managed to speak to the consultant without with mum to explain how much she’s drinking and how little she chooses to eat as she’d not been honest about it so they will start on detox as soon as she’s admitted, plan is to keep her in hospital till her larangectomy. She’s already worked out she can put alcohol down the RIG when she’s eventually discharged, how long were you in hospital for if don’t mind me asking? They’ve said she’ll be initially in ITU and then moved to a ward but will likely in for minimum 4 weeks post largectomy. The consultant did express he was concerned if mum would properly engage with aftercare etc and ongoing treatment post op but I said we’d have to at least give her the chance. 

Good evening JKE, I'm pleased that your mum agrees to go ahead with it all and that the consultant will start on a detox plan, i was given nicotine patches because of my smoking although i was a course to help me stop. I have never put alcohol through my tube i would be too frightened to do it. The RIG will come in handy plus she will be on nil by mouth until everything has healed up, i think i was two weeks and the first sip of water tasted so good. I was in the hospital for just over a month and was lucky to have my room with a shower and TV except for the last few days when i was put in the main ward. This is where a laptop, mobile phone, etc will help to pass the time of day. I'm sure she will be ok with the aftercare she might need quite a bit of help, to begin with, and i between you and me i don't think she will be back at work full-time at 6 months, maybe part-time to start with but its good she wants to try and get back to work a.s.a.p, only she will know when she is ready as we all recover and cope at different rates. I have everything crossed that everything goes okay, good luck and best wishes.

                                            Chris.