Dry mouth

Chaps said:

f anyone can tell me what he can expect over the next 4 weeks please? That would be weeks 4-8 post radiotherapy 

More of the same really. Recovery is a marathon and the are steps back as well as forwards. What we see much of is that there is a definite corner turned at around twelve weeks. I suggest Dave try tiny sips of a warm drink to act as a proxy saliva when he chews then another little one to chase his food down. 

Keep up with the swallow exercises. These are for life.

Finally, if Dave can chew gum it will help stimulate his surviving salivary function 

Thank you Dani 

Good evening, as a fellow wife I can feel for you. Just as Dani said, the next 4wks could possible be the same. It's more a "one step forward,two steps back" kind of journey from now on. My hubby felt a little better by week 12, swallowing solid food slowly starting to improve. Like so many, my husbands saliva was literally non excisting, now 19mths post treatment is still the same. He uses XyliMelts,especially during night, during the day he always has a bottle of water close by. Persevering is probably the key. All the best for you guys. Fellow wife Mel.

Hi Mel 

thank you, 19 months wow that’s shocked me is your husband able to eat out in a restaurant for example? I was hoping for some sort of normality by next year? 
Clare

Hi Clare, 19mths,I know, can't believe it's now pretty much 2yrs since diagnosis. Our new kind of normal started once he gone back to work,( he finished treatment NewYears eve 2024),that was in the May last year, light duties,half days, By then he still had his PEG, but he didn't really used it then,he was able to have softish food, soup with wotsits,was his favourite. He kept trying old favourites, till those finally were able to go done without any trouble. I think our first visit to a restaurant/pub was about that time,but he had to pick something from the menu we knew he could enjoy. The most frustrating even till now is when he gets a caughing/sneezing attack,while eating,with the lack of saliva and the dry mouth,this is one of the inconvenient side effects. He is still experimenting with food now 19mths later,however,spicy food is still a nono. He doesn't drink,but as an experiment he tries different drinks,just to see how his throat reacts. As I mentioned before,persevering is the key and be patient. Any other questions,feel free to ask. Hope this all makes sense. Mel x

I probably have loads of questions Mel it has certainly been a lifestyle change for us as Dave was diagnosed 2 days before retirement.. where as your husbands cancer? And what was his treatment? 
we were supposed to be going to live in France for 6 months and would really love to do that next year but I suppose we will need to see how things go.

The hard part for Dave is he was a chef so loved food and wine I think this will be the challenge for him.. he is eating things like cottage pie, fish pie and omelettes 4 weeks post op and I think that’s really good so soon, he can taste the food as well but he does say it looks nicer than it tastes

thanks for the support 

Clare 

It takes a while to recover from the treatment, I took about 16 weeks before I was happy enough to eat out, Fish and chips washed down with a jug of water...I felt a bit self conscious about eating in a busy restaurant... but needn't have worried nobody batted an eyelid when I had a few chokes...3 years since CRT finished and I am able to enjoy most food and drink...I thought I would never be able to manage a decent curry again... challenged myself regularly with different foods, some worked others not so good...I was out for an Indian meal last week...the menu offered the Notorious South Indian Chicken curry..I thought why not... thoroughly enjoyed it...washed down with a pint of Alcohol free Guinness... things do get better.

Thanks michael

i know Dave will be happy to hear that! I suppose everyone is individual when it  comes to what they can and can’t eat.. so we will wait and see, At the moment Dave can’t eat spices or anything acidic so hopefully that will change in due course 

thanks for the advice and congratulations 

Clare 

Chaps said:

I was hoping for some sort of normality by next year? 

We are all different but Mel's husbands timeline is unusual. Most of us are eating well by six months even though the taste can be muted. I was perfectly happy with things by a year out. Improvements continue well past two years but are fastest in the first six months.

Most of us make an uneventful recovery. We are never as we were but almost. Look at the foodie programmes Stanley Tucci makes and he was stage 4 with a feeding tube for six months...What inspiration!

I'm now OK with a wide variety of foods including medium hot curries

That's not a problem,I will try to answer as best as I can,we had to cancel our short break to Wales at the time. He popped into my place of work, I work as a chef,I can feel for Dave,showing me this lump on his neck, a trip to our Walkincentre and a referral later, we were sitting in our oncologist's office, soon to be told the news no one wants to hear,his cancer was bottom of his tongue,T4N3M0, was the diagnosis,MRI's,pet scans etc etc etc followed quickly after,from diagnosis to start of treatment were 10wks of anxious waiting and wondering,once we had his treatment plan and a diary of appointments it kind of became real. Keith had 30rds of RT (Mon-Fri) and 2rds Cisplatin.Keith's throat was very swollen,nothing got through for some weeks.What form of cancer has Dave got,that he can solid food already?  His journey maybe a little smoother from now on compare to Keith's. Fingers crossed and France is back on the cards soon. Mel x