Hello, I’m new here my husband has just had a full laryngectomee last week , how did everyone cope ? I’m visiting twice a day , he’s just constantly wanting to come home , texting every minute about it , I’m so tired , stressed, worried at the end of my tether has anyone got any advice please , thank you
It's a very sobering thought for me Lele; we kind of know the risks going into such major surgery, because they're explained to us, but we...I at least...always believe things will be OK.
When I had my infection, four weeks after I'd gone home post laryngectomy, there was a little blood on my pillow one morning, so I contacted my team. As luck would have it there was a clinic that day and they told me to come in. I was seen by my CNS and consultant and both could find nothing amiss so they said I could go home...after a junior doctor had taken a blood sample.
Had a ten minute or so wait in a clinic room for him to come, then when he arrived I started coughing...and then had an arterial bleed and vomited several pints of blood over the doctor, the floor, me, and the walls. Rushed to high dependency then theatre for emergency surgery where they basically plugged the leak with swabs of some kind.
Point of this is that, had I not gone into hospital (I actually demurred from contacting them the amount of blood was so small), had I not been held back for the blood test, had it not been for so many timing variations....I'd have been on my own in the car when it happened, or at home with my son, or in Tescos...and that would've been that, there'd have been no surviving it had I not been where I was in that tiny time window. Unbelievable luck...or fate...or someone looking after me (my wife died a month before my initial op so she got the credit).
Apologies, the last thing I want to do is make this about me, but your sad story brought it to the front of my mind and I felt moved to write it down.
And do you know what one of my first thoughts was when I woke up in post-op?
"I'm glad it didn't happen at home, that'd have been an awful mess for Josh (my son) to clean up".
I really feel for you Lele, I don't know you or your husband but I have a real sense of loss thinking about you, I hope one day you can make sense of it and come to some sort of peace. It took a long time for me after my wife died (not of cancer), but life does go on eventually.
Metastatic SCC diagnosed 8th October 2013. Modified radical neck dissection November, thirty-five radiotherapy fractions with 2xCisplatin chemo Jan/Feb 2014. Recurrence on larynx diagnosed July 2020 so salvage laryngectomy in September 2020.
I am so sorry for your loss, this is such a horrible illness, I still worry all the time about my husband, I sigh of relief every 3 months when we visit his consultant, every time he looks down his throat and says it’s looking good. The other night he told me he has been getting tingling in his head but didn’t bother to say. We can’t take anything for granted. We have to live for every moment we have. Your husband is at peace now, no more suffering. Please reach out to the nurses or even myself for support. Look after yourself and take care. Xx
