Slight bump in the road

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Hi all,

Had my 8 week check up yesterday. Mostly good and looking as expected, so more than happy with that.

The trismus has been a bit worse recently, I've got a sore patch on the right of my tongue and my voice has been getting croaky. I think I've been overdoing things back at work, which has resulted in a rheumatism flare up. it's also been an emotional patch, a year since all of this started (today's 'anniversary' is the PEG fitting). Had a big wobble a couple of weeks ago after a retired colleague's funeral, it hit me that I planned my own last year. Having a late start today  as part of re-setting and upping the self care. 

Nasendoscopy showed edema on vocal chords, so had a good chat with SLT and booked in to voice clinic in a few weeks, going to try and rest it more in the meantime. Toigh though when it's such a key part of what I do. Might also be that i'm pushing the food variety a bit and causing some reflux. Was given a huge bottle of gaviscon, but can't take it as much as they'd like due to the anti inflammatories. Also back on with the nasal douching to try and cut the phlegm balls I cough up  

Nick & I had a big chat the other night and we are going to look at downsizing so that I can ease off the work, also checking if my income replacement plan covers the RA. Haven't gone through the last year to run myself into the ground because the bonus gift of RA wears me out. 

I know a few others on here changed jobs or retired after all of this. Was it an immediate decision or did you slowly realise the need? 

Don't want this to read as gloomy as it does. Especially for anyone just starting. On the whole life is really good one year on. Walking the dog, getting back into the garden, 2nd holiday booked and grandma time this weekend. I know it's just a bump in the road and we all have them, pick ourselves up and get back on with life, but you lovely folks understand it so much more than everyone 'out here'. .

Take care all, Gill x 

  • Hi Gill, good to hear you're stepping back a little. I'm retired so going back to work was never an issue but I must admit I would have sorely hated to return. The treatment left me pretty battered emotionally as well as physically. I wasn't back to proper function without thinking about it till well over a year and even now three years later I don't have the mental and physical energy I had. I'm glad to be alive and enjoying life at a slower pace

    Dani 

    Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019

    I BLOGGED MY TREATMENT 

    Macmillan Support Line -  0808 808 00 00 7 days a week between 8am-8pm

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  • Hi Gill. I echo what Dani has said I was 61 when diagnosed  had already retired  I was lucky at 52 one life live it. It’s surprising how you can budget your money when  you need to. I kniw voice wise I couldn’t have returned to work I was a business travel manager and spent every working moment on the phone. No way could I have the mental nor physical ability to do that. Sit back take stock and have a rethink. Maybe a total career change ? As for acid reflux csn you take omaprozole tablets I never had it before but it’s the treatment that keeps on giving as for vocal I’ve developed amicus cysts on my voice box it’s being monitored with a cure in late spring day operation. In meantime we’re off on our travels soon the bike and sun are calling. 
    Hazel x

    Hazel aka RadioactiveRaz 

    My blog is www.radioactiveraz.wordpress.com  HPV 16+ tonsil cancer Now  6 years  post treatment. 35 radiotherapy 2 chemo T2N2NM.Happily getting on with living always happy to help

    2 videos I’ve been involved with raising awareness of HNC and HPV cancers 

    https://www.instagram.com/merckhealthcare/reel/DBs8Y0niJ8N/

  • Hi Gill, as others of said, make sure you ease up on working.  My son had his surgery in June last year and isn't back working as yet.  I think the main thing is to pace  yourself, don't overdo things and rest when you need to.  My son has done a bit of decorating (painted his home office etc) but had to do it in stages.  He has spoken to the Private Health Provider of the company he works for and, once he has seen his consultant next week, they will work out a plan for him to have a phased return to work.  He will have to work from  home to begin with and they are thinking of maybe 3 days a week to gauge how he copes.  Speaking can be difficult, especially if you need to speak a lot for your work.  Perhaps rest your voice in the evenings, I know is hard, but you've done so well so far.  It's frustrating as you just want to get back to 'normal' life, I know my son gets very frustrated when things don't go the way he hopes.  Everyone on here is so helpful with their advice and encouragement.  Keep fighting and, if necessary, down size to a smaller property to ease the pressure on you.  Take care xx

    Janet xx

  • Thanks Dani

    Yep already feel better just telling people. I needed to try. Now it's a matter of working out how to do it and how quickly. 

    Take care, Gill 

  • Hi Hazel

    I think a big part of it is the toll on my voice. Just need to think long and hard about what next. We had planned to open a b&b at one point, both worked in hospitality in the past. Covid would have wiped us out if we'd done that, so vack to the drawing board for now.

    I've been on Lansoperazol since the PEG fitting, but they wany me to have the extra Gaviscon while we work out the cause of the inflammation. 

    Ouch, sorry to hear about the cysts. Hope the op goes well and doesn't affect travel plans! 

    Take care, Gill 

  • Thanks Janet,

    I've had a really supportive return to work. Started back July, mostly wfh then in from Sept, but still a reduced workload until next Sept. I just forgot how mentally, physically and emotionally demanding it can be and much like Dani & Hazel have said, I'm just not as sharp as I used to be. 

    Hope your son gets good support too. Please update us on his check up next week. 

    Take care, Gill

  • Yep already feel better just telling people. I needed to try. Now it's a matter of working out how to do it and how quickly. 

    New vistas open up. They might not be better or worse but they will be different. You’ll be busier than ever but doing stuff you enjoy because there’s no pressure. 

    Dani 

    Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019

    I BLOGGED MY TREATMENT 

    Macmillan Support Line -  0808 808 00 00 7 days a week between 8am-8pm

    Community Champion badge
  • Nasendoscopy showed edema on vocal chords,

    I’m no doctor but I’d bet you have LPR as a result of the reflux. It’s so common. Another gift from treatment 

    Dani 

    Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019

    I BLOGGED MY TREATMENT 

    Macmillan Support Line -  0808 808 00 00 7 days a week between 8am-8pm

    Community Champion badge