ENT appointment - I suspect cancer of throat

I have Elhers Danlos Sydrome, which affects my esophagus, so am only on blended liquids and have been for about 10 years.
In January 2022 I developed pharangeal swallowing issues and soreness. Today as I write this I am about to go into a ENT appointment (actually in a few hours) in which I strongly suspect I will be diagnosed with cancer of the throat as soon as they take a look.

I have soreness in a specific spot on right hand side. Can feel a scab or roughness when I swallow. Have specs of blood in my spit - more so in the morning.

My last hope, though I think it is in vain, is that my coughing has cause some damage.

I am underweight due to my other health issues, so I am doubtful that any treatment would be offered. I have also noticed some more fatigue and headaches in the past 2 or 3 months. All bad signs I think.

So, in essence, I am about to find out if I am going to die a lot sooner than imagined.

My wife will be there with me, but has just lost her father to another sort of cancer, so this will be really hard on her.

Reaching out in there for any support of experiences that may give me some strength.

 

 

  • That is great to hear because from what I see and hear so much ,  the consultants dont sugar coat things and if they have concerns they pretty much come right out with it .. 

    So, he is going to call you Thursday too? which will be amazing for you , no hospital to attend and hopefully you can have you partner there when you get the call but tbh , things look very positive,  especially if they have removed the lump in full too

    I didnt really have a problem with tomatoe sauce. The skin to the area is no longer raw and open so food no longer stings or feels like glass, it is  just very very sensitive to being touched or moved too much. It is hard to explain .   So anything bulky adding pressue to that area makes it angry which i assume is because the hole is still trying its best to seal up even thought the edges are not raw and open, that was why I had such a huge worry it would never heal over.  But slowly ,it is starting to fill in but it is  just not smooth like the other side,  just a mass of lumpy scarr tissue  ..   the worst thing , oddly is yawning, because the process of yawning stretches the skin there and if i try and surpress the yawn it is bizarrley worse .. so now I go with the yawn as the pain is better than trying not to yawn .. but dont you just hate when you cant stop yawning, well I fear it big time now lol .

    x

     

     

     

     

  • Yeah something I have been praying for all weekend. It wasn't actually my consultant that rang it was just any they could grab I think - as I was pestering them so much lol. my consultant will ring me Thursday hopefully with some results if they have them back. 
     

    ouch that sounds painful, think I've got a good mental image of it now. Great that things don't sting! Anything that goes near mine apart from water seems to make it throb. And I know the yawn feeling so well haha, and the more you think about yawning it makes you want ti yawn! In fact this is making me want to yawn now x
     

     

  • Fingers crossed for Thursday for you,,, do you have a set time for your call?. Will it clash with my PET scan , I am due in at 9:30 and told I will be there for approx 2hrs .. your day will distract me at least .. 

    I am not looking forward to PET scan , the thought of have radioactive substance put in me  and then having to lay down for an hour whilst it works around me.. my chap cant stay with me because of the nature of the substance and I will prob have another anxiety moment .   

    That said, I do have two treatmnets of chemo looming too , pretty much the same scenario but subtance entering in for around 8hrs  .. and I was talking to a lady also just disgnosed with soft palate cancer and having the same treatment,  she was so worried her hair was going to fall out and I must admit I thought all chemo did this too but apparantly the type we have does not cause hair loss.  So , I have had an appt at the hairdressers booked  in for months and it is on the 21st April and now I know my hair isnt going to fall out I am going to go head and get it done before I start my treatment ..  it is weird how things play on your mind though as a few nights later I woke from a dream that I was sat in the Hairdressers having my chemotherapy , the mind  eh lol ., 

  • Oh at least you're in first thing in the morning- get it over and done with and less time to get worked up. I read about the pet scans and they sound much better than the mri! I'm sure whatever they inject into you won't feel any different from the stuff they inject into you for the mri too. You'll have to try use some of your mindful breathing whilst you're in there and think about the Easter weekend coming up. Will message you to see how it's going. My appointment is at 2:45 on Thursday. 
     

    I had a really bad panic attack when going under for the general anesthetic and then when I came round again - when I woke up I was sat up thrashing around at the nurses and shouting for the lady I met in the waiting room before I went in for the biopsy ha, so glad she wasn't around or would have been embarrassing.

     

    I read a blog of a man who went through the same treatment including 2 rounds of chemo and 30 rt sessions. Was a good read and helped to give you an idea of what to expect. Think he was called Gary? Have you seen it? X 

  • oh , haha ! thats quite funny ! I was actually so calm when I came round from aneasthetic , it was like I was in a trance.  I was just sat watching all the other people. also coming out and how different everyone was .. (people watching ) . .a lady next to me  was asked by her nurse , scale of 10 how bad is the pain ,and she just kept screaming 10 10 10 and groaning so loudly .. , I didnt have much pain ,and my nurse was scaling mine out of 3, think I gave it a 1.5 but she was busy monitoring me and making notes and she kept coming up to me and telling me to breath , me telling her  'oh I am ' but she was like , no please,  you need to take big big deep breaths lol .. I think maybe my oxygen levels were low and my breathing too shallow, but I felt oddly calm  compared to how I was being wheeled into that theatre, then my heart was nearly beating out of my chest ..  but three times she came back and told me to breath lol ..   a guy over from me was sat telling jokes to his attending nurse , non stop jokes. he wouldnt shut up .. haha 

    Yes, i am taking my headphones so I can meditate  when I am there lol  ..  I  love reading but find it so hard to say focused.. I end up reading many chapters and not recalling any of what I have read and have to back track again . 

    I have read a few blogs on treatment for throat cancer  , some are horrifying,  some much more reassuring , it seems we all cope and react differently to the treatment, but I will see if I can find Gary's too .. 

    x

     

  • Haha that's funny, I'd have been the lady screaming 10! bet it's entertaining being a recovery nurse in that area. Will see some things for sure! Had you been under general before or was it your first time? 
     

    I thought Gary's was good, really informative and reassuring. Will send a link if I can find it! I'm trying spag Bol for tea tonight after your influence! Fingers crossed it doesn't burn ha! X

  • Fingers crossed for you -  we are having chilli con carne tonight but all going into blender again , apart from the rice

    Yes funny story - i had my appendix out 20 years ago and I was always one who thought I would be one of those  allergic to anaesthesia  and would not wake up .  So , I was even worse back then but in so much pain I needed it to be over .  But when I was in pre op waiting for my biospyy my aneasthestist came by to chat - she said to me , "now you have had previous operation" , I said yes , I had , she said I know because i was your anaesthetist then and she said she had just fully qualified back then and I was one of her frist patients lol ! She said , "dont worry I have got better since" lol ...she said she had been away for many years and come back to this hospital and was so shocked to see her name and signature on my medical records lol 

    Was this your first general anaesthetic? 

  • Spaghetti went down well! Had it with meatballs. Hope the chilli was nice - blending it is a brill idea. 
     

    omg I can't believe that! That's amazing! Great little distraction for you too ha. I had GA for my appendics too but that was 18 years ago and I don't remember it very well. My anxiety has definitely gotten worse as I've gotten older too so I was expecting a rough ride  this time x

  • Great to hear , there is me blending spag bol meat to pulp  and you are enlarging it

    Yes , it seemed to make the anaesthetists day .. she was telling others when I was being zipped off to theatre  -  they're all stood around sticking electrodes patches on me and catheters in yabbering away and I am like 'please hurry up or you may need to de-fib me at this rate".  .. 

    I never realised how awful anxiety is and how badly it can destroy you ..  I cant imagine how it must be for people who have to face these scenarios alone . Hopefully today as eased your mind some since your phone calls   ️

  • Hahaha love it! 
     

    yes anxiety is bloody awful. CBT is great but I think everything goes out the window when you're in that state of panic. Yes I can't even begin to imagine what those people go through, hopefully they get support through charities as there are some really amazing ones. My mind has eased so much from those phone calls and I'm so so grateful. 
     

    how are you feeling? Please let me know how you get on tomorrow I will be thinking of you x