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Finished my radiotherapy end of Aug 2019, after surgery middle of June.
The treatment peaked 2-3 weeks after Aug, with a lot of pain.
Since then I've been trying to get 2/3 litres of fluids (mainly water) per day & yet I'm still dehydrated and ended up in hospital twice as a result.
To add to this, after coming off a fair amount of medication, I'm now getting sore throats, having difficulites swallowing food and losing my voice every other day, even though I'm still using the mouthwash, cleaning teeth etc.
My shoulder is now becoming sore and my neck painfully stiff.
The medication they have given me to keep my mouth from getting dry overnight doesn't seem to work as I'm having to wake up and drink water, which then has a knock on effect.
Is this now a GP problem ? (Or do I need to contact the hospital where the surgery was or the treatment. Or is it Macmillan and or other.
Do they do follow up scans, dentist checks etc?
Not sure who to turn to.
Hi Daveg710. It's great to get to the end of treatment isn't it? Well done. But now the less predictable stuff starts - the things they didnt warn you about........I remember that it felt very very hard at your stage - so many things going on and so little support. But be reassured that your probably at the worst stage and it will improve, albeit slowly.
Practically I would suggest you contact your team - where you had radiotherapy, and let them know all your symptoms. You may be developing lymphoedema (soft swelling in the neck) causing tightness & voice changes; it sounds like you need advice on neck exercises from a physio, nutrition advice and someone to check why your throat is sore. I don't think your GP will be much help.
As far as dry mouth at night, do try Xylimelts. It's a lozenge you stick on your gum at night which slowly dissolves and stimulates saliva flow. Changed my life at your stage- from waking multiple times for water I haven't needed water at night from 1st night I used them. Many on here find them helpful. Online availability only - mouth ulcer shop online, you can ring and ask for some to try before you buy.
There is so much more I'm sure others will add to help you through this challenging period, but please get in touch with your Head & Neck nurse and they should he able to get you some good advice & help. Do come back and ask more questions as need arises.
Best wishes for your continuing recovery.
many thanks for your help. I'm not sure why they dont tell you these things when your treatment stops and who to go to.
Last time I contacted the treatment hospital with the throat problem only to be told I needed to go to A & E. I've got more answers from the online community.
I keep thinking I'm taking a step forward, but then go two back or sideways.
Hi Dave , i cannot really add much more to what Hilary has written as i would have said much the same, sometimes it gets harder once we leave the hospital as we are being looked after by the team, once we leave some people don't receive the help they need and are left to fend on their own. Im so pleased that have found answers via the Online Community as we do try our best to answer questions or worries through our own experiences, so please keep posting if you need more help, all the best for the rest of your recovery, take care.
Its sometimes not easy but its worth it ! Click here to find out more
I would do as the others have suggested and get in touch with your nurse, I had a Macmillian nurse not all do but I believe they then have a contact nurse, I found that was the only way to get to the people you needed as going through the reception at Oxford was impossible (very badly managed) but when I got to the department they saw me very quickly, the departments are fairly well run unlike the top management.
Useful format the online community & Macmillan
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