Hi maggie

Sorry to hear of your side effects and yes we dont really get the full picture from consultant/support team and they are quite debilitating especially all at once.
I took some time with recovery and eating was a real issue for me as well for some time.
Taste does come back but as we are all different this can be at different timelines. Also remember we might still struggle with some foods for even longer ( chicken/rice example in my case) but you do get there.
I suggest you speak to your support team as I dont think you are getting enough fuel in your body.
I know from experience how hard it is to eat trust me but please speak to support team which should also have a dietician present.
My mantra from the start was drink, drink again then drink some more. Water to me is one of the best medicines and you need to keep hydrated, even if its sips at a time, please try and drink more water.
Consipation etc ..maybe GP can prescibe some laxido which you can take when contipation a prob then leave when diarrrehoea. Also even more important you drink more when having diarrhoea and rehydrate.

hope picks up for you soon. Ive also posted a link to my blog that I kept from the getgo and logs timelines/tips picked up along the way etc.

Let me know if I can help further

Ian

radiotherapythroat.home.blog

Flying with feeds......

Mark is now 4 weeks post end of treatment, pulled out the ng tube but continues to only be able to drink fresubin and water. 

Hooefully this will slowly improve before we hit Ibiza in October for some much needed energy with the kids. 

However I’m sure he will still need the fresubin to some extent or another so question is does anyone have any experience with flying with liquids over the allowed limit??  

Hi this is Hazel last year I flew to Murcia 8 weeks post treatment I asked dieticians s few weeks before fir some samples of dry supplements that I could mix up with water or milk to try I got meriton and cal shakes to get used to then got done prescribed.plus over there u can buy Ensure in a tub cost €32 per tin which lasted me a week. We also paid for an extra suitcase to be checked in with all my paraphernalia as the drinks weigh heavy .I also took a few in hand luggage along with letter from dr explaining why plus copies of all prescriptions and a letter translated into Spanish stating what I had what treatment etc. 

Please ensure you declare on travel insurance the cancer  ok I am not covered for it but if u dint drckaire it is fraudulent. Don’t try n do it online speak to the companies. I use b u p a travel  insurance friends whi I met via radiotherapy use boots but again don’t try online as you need to explain everything. Plus don’t forget toothpaste and mouthwash as they are much stronger over there even xero lancer which is alcohol free but no way could I use it as too strong  

U k security did get iffy with me the first time re liquids so allow plenty of time. The 2 Nd time we flew I didn’t bother I just took dried and bought what I needed. I found in October I could eat a few bits croissants with plenty of butter soup dipping bread into them. 

Make sure oncologists or dr Okies you to travell 

good luck

Hazel one year ppstvtrestmentvend of month. 

Hi Laura 

oh no ive  heard if coming out in sympathy but not that drastically!Am really hoping you’re not diagnosed but if you are unfortunate enough to be at least you know we will be here for you .

please keep in touch and sending hugs to both of you, hope Micks next scan is an all clear ,but remember people on here have also had neck dissections and are still with us years after the event .

take care 

Hazel x

Hi everyone’s quick update .am nearly a year post radiotherapy at end of this month and today looking in the mirror I can see the back of mynthroat for first time in a year !! I have something  missing !! The uvulva or dangly bit between tonsils .Now I know why my thin saliva isn’t there and if I am honest doibtnut will return fully as I have discovered that this makes a lot of thin saliva especially when talking ,imdomdry iut quite badly when talking for any length of time now I know why after a bit of investigation recognised sites only of course !the uvulva creates a lot of thin saliva .so where did it go obviously along with my tonsil it has got zapped by the radiotherapy!!!!and melted away !

Anyone else out there with the same ?

Hazel 

other than  that and 20 min naps am doing ok much better than 12 month ago lol

Hi Hazel It’s surprising that no one told you that the Uvula has gone during your check ups no wonder you’ve had so many saliva problems, my uvula swelled up after the biopsy and stayed like that for a couple of weeks in fact it got so big I was swallowing it and remember it being one of the worst things, although my saliva has returned in my cheeks the back of my throat is still dry so my uvula isn’t working fully still. 

Had my second post treatment check up today seven months after treatment finished, all good although still very early was the verdict in and out in five minutes, back to Skiathos next week so plenty to be happy about.

Hope everyone is doing well 

Dave

Hi Dave ditto today is first time I’ve managedwith my magnifying mirror to manoeuvre a good look st it I’ve had glimpses but as u know now we are lucky to get 5 mins st e n t appointment s but next one 5 September I will be asking !! Although I’ve had to beg to get appointment best they could offer was mid October ummm consultant wanted 6 weeks not 13 ! Am hoping that once year is uo it will be every 12 weeks. Ouch didn’t know u had problems with it after biopsy. Yes my cheeks are producing some saliva under tongue saliva is fine have had 2 acupuncture sessions and got 2 more booked. Enjoy Skiathos we are back in Los Alcazares mid September.good result  Sunday long way to go though

take care

Hazel x love to Julie xx 

Hi Dave not good my last one was 25 June cancelled then 18 July rang me day before would I give it up for an urgent cancer referral talk about being put in awkward position offered 25 July asked would consultant be there oh yes well guess what he was in holiday so I was lied to as well. Likewise couldn’t give me appointment sometimes it’s frustrating!!! Enjoy Greece as ian would say 

onwards and upwards 

Hazel x

Hi All-Hope youre all doing ok.

Just had 2nd follow up appointment (post chemo rad) so 12 weeks post treatment now- & here they just do a physical exam- feel of neck, look in mouth & scope down nose-no scan-unless there's anything new- all areas have different ways of doing things I guess- but all good.

Joe does have a gland that seems to pop up about 70% of the time to his right (cancer)side after eating-little bit painful, & goes down again after about 10 minutes & they said it's more than likely a blocked salivary gland-so is booked in for an Ultra sound to check-hopefully won't take too long to come through the post! so apart from that-all good.There are a few self help things you can do-massage it, plenty of water (You're right with your mantra Anchor!!) warm compresses when it flares up & sugar free lemon drops! We will try this but am realistic to know it may not make a difference-worth a go! All in all they were very pleased with his progress :-)

We plan to take our holiday mid Sept & need to book insurance-any tips of who dosen't rip you off that much? I'm sure you've had the delight of booking.....  :-/

Take care all of you tough cookies out there-I am still in awe of you all- Have a good day x