tongue cancer

So sorry to hear this has happened,jo  

Is it swallowing that is the problem? Because there are things that can be done  

In my opinion you shouldn’t have to cope with this unless the doctors have said nothing can be done. If you are getting nowhere go through PALS and lodge a complaint. 
https://www.nhs.uk/nhs-services/hospitals/what-is-pals-patient-advice-and-liaison-service/things 

Do you have a relative or family friend who can help fight your corner? 

I threatened to go ask for a second opinion and my consultant literally jumped from his chair and had me go through more tests.  Then he ushered me out with an appointment in July. Thanks Beesuit but I am capable of fighting my corner when it comes to it.  The problem I have is that nobody listens.

Sorry I didn’t mean that you couldn’t look after yourself just that it’s easier with somebody watching your back. There’s a terrible tendency to fix us and move on to the next patient. It depends where you are I guess. My team have been exemplary in their care but then I’ve made a pretty good recovery. Nevertheless I have been see twice with something worrying me and they were on it straight away. 

Good evening Blackboab, i have had very similar and i constantly dribble, mine is due to reconstruction of my lower jaw. I tried lower dentures but they did not work out and the body rejected the implants so i have no lower teeth so i carry a flannel around and keep it handy for when i dribble, some times it can be the saliva glands being too productive yet others get it when they have saliva glads removed so get a dry mouth, plus your swallowing is not as good as it used to be due to rebuilding the tongue so the excess saliva is not being swallowed quickly enough. It all comes down to the quality of your lip seal so maybe they could work on that and get your tongue a bit more active, i hope this all makes sense, all the best ,take care. 

                                                                                 Chris x

Hi Blackboab

I have a similar issue to you and Chris. I have a poor lip seal as after 2 maxillectomies I currently have no teeth in my upper jaw and after a partial mandibulectomy I have teeth only on one side of my lower jaw. This means that I have limited lip seal so find that I dribble quite a lot and am constantly wiping my mouth. I have also had radiotherapy twice at different times to both sides of my face so then I sometimes have a completely dry mouth in contrast to the dribbling.  I haven’t been able to figure out why the contrast between the dribbling and dry mouth but just have to work with it.

I am waiting for reconstructive surgery for my upper jaw and will then have some teeth so this may help the issue with the lip seal.  I wear a mask when I go out mainly because I do not like the way my face looks at the moment and am a bit vain about being seen in public. I find when I wear the mask I have to tuck a tissue under it to catch the dribble. I also take plenty of tissues with me wherever I go and have several boxes of tissues around the house for easy access. I think I might have to take out shares in the tissue industry.

It is all a bit annoying but I’ve begun to get used to it and hope that with my reconstructive surgery things might change a bit.

Are you seeing a speech pathologist as this is something that they might be able to help you with as it sounds as though it was quite successful in the past?

Lyn

Hi Jo

So sorry to read of your struggles.  I am amazed how you coped with your rehabilitation by doing your own physio through a booklet. I can see how all this has been an uphill battle for you and how well you were recovering until you started experiencing this problem. I can understand your frustration.  It is good to see you have an appointment to discuss this problem further, hopefully all your team will assess you and look into why this is happening and have a plan to help you,

I have a problem with managing my saliva too.  I have had a maxillectomy and was restored with a dental obturator.  Some of my problems are down to lip seal as Chris and Lyn mention, and how my mouth functions slightly different to how it used to. When I first put my dental obturator in I can start producing even more saliva  and then it settles down a bit. Sometimes my salivary glands just go into overdrive and I deal with it by sucking and swallowing the saliva more. I always have to have tissues handy. Like Lyn I found putting paper towels in my face mask helps when I am out and about.  

I do hope this gets sorted for you.

Best wishes 

Nicky

Sorry didn't mean that as an insult. You have been very helpful and kind. I just get very angry at times and my anger kinda takes over  Jo

Hi siphie. Really sorry to hear what you are going through. I think my husband and I have shares in the same company I only had the surgery no chemo at all.. I wore dentures before the surgery but after (because the shape of my mouth changed) I has new dentures fitted but because of the pooling saliva I can;t get them in. Top plate a good fit but the bottom has nothing to cling to. I think my biggest problem is trust. My consultant at the dental hospital didn;t help. I made a small remark about getting impatient for my new dentures and can;t wait to try eating again.  I could;nt believe what he said . looking straight at me he said I didn;t need teeth to eat! I was so gobsmacked I could;nt answer.. I wonder what he uses to eat his steak or crisps.  My doctor has requested another speach therapist appointment but no one wants to see me,  Anyway you take care and hope we speak soon. Bye Jo

Hi thanks andy. I am just a bit down at the moment. My situation is not being looked at properly. everyone is talking about drying my mouth. but it doesnt stop the amount of saliva generated.  I can;t  swallow any liquid.  It just pools at the front of my mouth. I can gulp but have to clean my mouth out when I am finished.Unlike you my saliva is a lot and I have tissue in my mouth 24/7. Anyway I suppose I am still alive May speak later. Take care Jo

Thanks Chris nobody has suggested that before.  Thank You