Jaw cancer

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Hi all I’m back again well its a year on from my operation I’m doing fine except I still don’t have any teeth but five they left after giving me my life saving op, by taking away my left jaw bone due to a huge tumour wrapped around it, and using my right leg fibula to make new jaw bone, I’m still using my peg and still find it diffcuilt to eat or swallow biggish lumps of food and I’m still waiting for reconstructive surgery on my mouth and getting dentures fitted. 

I went to the local  hospital today and came away full of anger and felt just so deflated you see my original hospital at York done an amazing job told me all my dental work would be dealt with in that hospital,  and I would have had all this work done with by now but we were evicted of f the land we had lived on for three years meaning I couldn’t finish my treatment with them the people I trusted. 

I made and had to virtually start again, I’ve been going to this local hspital now since January and I haven’t had ne bit of hope of moving ahead, I went to see the reconstructive dentist today and what a sham, no notes from York hospital then said I need to get my five remaining teeth scaled and ok,I shed, I asked why I wasn’t having them done there which previous hospital said I would, he just replied  find a nhs dentist to do them .

now as you all know it’s impissible to find me I have tried ver 30 now with no result so now I’m supposed to pay privately to get five teeth cleaned? Why can’t this be done by dentists in the hospital for cancer patients ? 

Itsso unfair after going through major surgery it gives me no hope of actually getting to the end and having new teeth x I’m so deflated upset and angry 

  • Sorry for the  misspellings on my previous post  hope you can get the gist of it all sorry x 

  • Sadly this is happening everywhere. No consolation I know. I had my last appointment with my oncologist last month and mentioned to him that I might be moving out of wales. He hsais that if I needed help in the future to contact him so that he could speak to whoever was taking over my care. His quote “No oncologist is going to refuse another”

    It’s worth a try. Get back to your old team and see what they can do. 

    Dani 

    Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019

    I wrote a blog about my cancer. just click on the link below 

    https://todaymycoffeetasteslikechristmasincostarica.com 

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

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  • Good evening Tiadora, i think you have to have a strong word with your consultant as he is in charge of your health and future treatment, in other words, the restorative dentist should do what the consultant tells them, to be honest, i always found everything seemed " to much trouble" with the restorative dentist i had but she did make and fit new dentures for me. As you say its virtually impossible to see a dentist these days so having it done at the hospital will be better for you. I had to wait 18 months before they could do the implants and dentures this was to make sure the new bone graft was strong enough, i never paid any dentist fees during this period. I Hope you manage to get the treatment and new dentures sorted, take care.

                                                                    Chris x

    Its sometimes not easy but its worth it ! 

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  • Hi Tiadora

    What you are going through is terrible and so unfair after your op. It just isn't right. I was very lucky as I have had really good service from my medical team and from the dental hospital where I live. They have always been up to the mark and nothing has been too much trouble and that is how it should be. My prosthodontist is amazing. There is no way a normal dentist can manage with the sort of history you have it needs a specialist. I did have to wait a year for my implants and upper denture for various reasons. (the making of the titanium prosthesis had to be done in Germany and took several months, I had to be approved to have it done on the public system rather than private and that took a while as it was very costly and out of my price range) and I remember being so frustrated for that year thinking that it wasn't going to happen. I felt like my life was on hold and that I was going to look like an old witch forever. (I too have had jaw cancer and had 2 maxillectomies and a mandibulectomy) When you have active cancer things go very fast but when that is removed and it is no longer life threatening things can take much longer.

    Can Macmillan give you any advice how to proceed? Can you get in touch with your original team and ask for help? Can you put a complaint in to the hospital? What about your local member? What about your G.P. can they help at all?

    Who can advocate for you? The social worker at the hospital?

    Don't give up there must be a way forward you just have to find it. Be a squeaky wheel.

    In relation to the eating. I can only eat puree now even with my dentures and it is something I have come to terms with. Are you able to get enough calories via Fortisips or a supplement drink and puree? If so have they said when you can have your PEG out?

    This is a very frustrating time for you but don't give up hope. I know it is hard enough dealing with the side effects of your op let alone fighting the establishment but keep going your tenacity will pay off. Life can be unfair but we are here to support you.

    Sending hugs

    Lyn

    Sophie66

  • Hi Tiadora , Not good and to be honest my hubby had the same surgery as you and is having a similar problem. He has teeth on one side and the hospital dont seem to care of he's struggles. It looks like some nursing teams are fab and others are clearly in the wrong job. Hope you get this sorted x