Recovery

Hi Debbie60 Sounds like you are doing well. Before I had tongue surgery I was told that if they had to damage the nerve relating to taste that was it gone forever, unlike radio where it will gradually return. So it is good you still have the taste. I can't comment on your post operative issues as they abandoned my surgery on my tongue during the operation so did not have the trauma you've had.

As to working; I was fortunate enough to be semi retired before my diagnosis and then fully retired as I started treatment.  If you can give up paid work and maintain a lifestyle that is acceptable to you then I would do it and start ticking off bucket list items and having a great time. 

That said, I think we all need something to stimulate us and volunteering is a great thing to do.  It does not have to be related to your treatment or those that have helped you, but your experience could be invaluable to those that follow you.  I've 2 voluntary roles, neither of which are all consuming but do allow me to give back to my community and my hospital.  Whatever you do make sure you enjoy it.

Hi Debbie Good to hear you’re  to recovery . I get burning tongue / mouth not all the time but I’ve worked out what my triggers are in my case cheese snd yoghurts both of which are fermented. Of course I did have chemo snd radiotherapy so may be different. But yes when I get it I want to Rip my tongue out. You can try grafting with baking powder and Luke warm water 2 teaspoon to a glass. 
min retired also I do my but on here snd cancer uk plus my blog I find that works as can do it anywhere. At min we’re over in Spain riding our bikes snd living our life’s to the max. 
Good luck Hazel 

Hi Hazel, I will try the baking powder and warm water thank you. I am looking forward to flying our bikes over to Spain, in all likelihood it’s going to be in the new year, it gives me a focus. Have a wonderful time over in Spain x

Hi Peter, I am going to look at my options. Having cancer has reminded me how fragile life is. I am so lucky and grateful that they got it all. I will always be grateful for the support and advice given to me by all of you on here. Like you I want to do some voluntary role, to give something back :)

Just too give you something to aim for xx

Oh, I wish we were there now. 
I keep looking at our bike boxes and saying soon very soon lol

Enjoy xx

Hi Peter. Can I ask you what your diagnosis was please?.  And also why they abandoned your tongue operation. Although I have inner cheek cancer I also have a couple of areas of concern on my tongue at the side. They noticed when they did my cheek biopsy ...thanks for reading 

Hi Debbie 

You are doing really well on your recovery. Trismus is something that some of us will have to contend with after our treatments. You can now hold 12 tongue depressors in your mouth and this is good. Progress can be slow with trismus but don't be put off by this.  It is important to keep going with all the therapies your medical team advise you to do.  

I have had trismus and I know how painful the Tongue Depressors are for opening the jaw. I found as they have no give and are rigid when I added another T/D the pain is caused by the thickness of the T/D being too much to take on in one go with my restricted jaw. I found  my own way round this to cause me less pain. What I did was to stack as many T/D in between my teeth so they felt snug but not uncomfortable. I then took these out and secured these together with a reasonably strong elastic band roughly halfway down the stacked T/Ds. I then inserted an additional T/D through the middle of the stack sideways in front of the elastic band. This forms a cross shape. I then secured this cross with another elastic band, sort of boxing the sideways T/D  in.

Then I inserted the stacked T/Ds between my teeth. I always made sure elastic was well away from my mouth. When I felt ready I then took the stack out and inserted the sideways one to be stacked with the others. Placed these T/D back in between my teeth and held in for a while and then repeated the process. Once it got painful I stopped.  This method I found much kinder because it creates some give because of the way the sideways T/D lies and off sets some of the pressure. This then prepared my jaw for the additional T/D. Just sharing how I used them and not advising as your medical team know what is best for you.

Best wishes with your ongoing recovery your are doing really well.

Nicky

Hi Nicky 

What brilliant advice, I am going to definitely try this technique.

This might help with the pain, I do the exercise 5 times a day, I hold them there for two minutes, and the relief when the timer goes of.

Can I please ask how far can you open your mouth now

Thank you for your advice x

No Problems.  Technically I am Cancer Unknown Primary (CUP)  It is definitely in the H&N area and was diagnosed from a swollen lymph node on the RHS which was removed and histopath undertaken.  That was an HPV positive secondary.  Scans indicated tonsil, tongue and maybe back of nasal area.  Biopsies done.  Nothing found.  To be safe I had my tonsils removed and all right neck lymph nodes removed.  None were positive for cancer!  That was in late 2019/early 2020.  Summer 2020 PET/CT was clear.  In Jan 2021 they found a primary in my tongue.  I elected to go first for surgery.  6 weeks later when they opened up the tongue to remove the tumour they did in-theatre pathology and no sign of the tumour...  Hence abandoning the operation after 2 hours.  No point on taking tongue for no reason.

Second time it has come and gone!  Now I am on 6 week checks.