Obturator

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Can i get advice on how to progress with eating with an obturator. 4 weeks ago I had surgery for removal of septum, hard palate and neck dissection. Up until last week i could only take fortisips and thin yogurt as the post surgery obturator did not fit. This has now been changed. Im trying various things but not doing well, mashed potato stick to the plate. Shepherds pie sticks, and the mince just rolls around my mouth. Pasta sticks too. Ive not chewed for weeks so i did try with a tiny piece of toast .lt felt alien. Am i destined to just eat soft foods in sauces that i can just swallow? Its bad enough adjusting to a mouth full of plastic and metal without working out what to eat. Thanks, Paula 

  • Hi Paula. Getting used to the obturator does take time and some adjustment and it is early days still. It is a game changer and I'd like to say that it all comes good and you will get back to normal eating but unfortunately in my case this did not happen. Others may have had a different experience.  I had an obturator from 2019 after a left maxillectomy for 3 years and it took me a while to work out what food I could manage. I had a right maxillectomy in 2022 after more jaw cancer and now have had a skin graft to the roof of my mouth but still unable to chew.  Initially I though I was not trying enough to chew but lately have come to the conclusion that I just am unable to so have come to terms with it. Unfortunately the first  maxillectomy  did change what I was able to eat long term.  It took me some time to work out a menu that works for me and is reasonably tasty. I can now only manage puree and found after my first maxillectomy that I had much the same diet. The things I can manage now are weet bix soaked in milk or Fortisip, topped with pureed fruit and custard, yoghurt or icecream. I can manage very soft boiled eggs and after my first maxillectomy could manage eggs benedict or plain poached eggs. I puree shop bought shepherd's pie mixed with pureed steamed vegetables mixed to the right consistency using milk or broth and sometimes mix in pureed baked beans. I find a slice of soft cake soaked in Fortisip or milk with pureed fruit or yoghurt tastes quite nice. After my first maxillectomy I used to make a lot of home made soups. I bought a book with soup recipes and worked my way through them. Custard home made with eggs is nourishing. You can make smoothies with any amount of different ingredients. I top up with Fortisip to make sure I get enough calories. I try to make sure that during the day I eat a healthy diet that includes protein, veg, fruit, dairy.  You can slow cook different meats and mix with gravies and steamed veg. You can puree tuna mornay.  I do miss lots of things e.g. bacon and fried eggs, roast pork with crackling, toasted sandwiches etc but over time have come to terms with my different diet. I am able to maintain a healthy weight with my current diet. In f fact I now eat much healthier that I ever have.

    The thing is that you have to try out different things and work out a menu that works for you both in texture and taste. Meet with your dietician and they will help you work out some ideas that work for you. You go through a grieving process and this takes time to work through but you do get there.

    Lyn

    Sophie66

  • Thank you so much for replying, i think i am over thinking it and rushing, i will carry on with my soft things for now, although i am worried i will loose my chewing muscle if i just keep direct swallowing, all will change after radiotherapy i bet anyway, and i may be back to fortisips. I am seriously thinking about refusing radiation after the things ive read re short and then long term side effects. I thought i was strong, but im not coping well. Sitting here with a lump of plastic in my mouth, numb from my head to my shoulder on right side, and my neck scar feels like it’s strangling me, with s huge lump under my chin, makes me feel that my life is over. So sorry to be negative after you took the time to reply x

  • Hi Psula Please think long and hard about refusing radiotherapy.Yes it’s hard but we don’t get all the side effects we are told about them but it’s rare to get everything likewise long term side effects most can me managed. I’m over 6.5 years post chemo radiotherapy and I’m living a good life. You're stronger than you think you are, maybe a chat with yiur cancer nurse? Do you have a maggies centre near you? They are mostly linked to major cancer centres.  You can also ring the Macmillian line to speak to someone  As for loosing  swallow for 5 weeks nothing went down my throat apart from odd sips of water  I did my swallow exercises and I’ve nit had any problems  if you are  manage to swallow soft foods I really wouldn’t worry about the chewing muscle  

    Hazel 

    Hazel aka RadioactiveRaz 

    My blog is www.radioactiveraz.wordpress.com  HPV 16+ tonsil cancer Now  6 years  post treatment. 35 radiotherapy 2 chemo T2N2NM.Happily getting on with living always happy to help

    2 videos I’ve been involved with raising awareness of HNC and HPV cancers 

    https://www.instagram.com/merckhealthcare/reel/DBs8Y0niJ8N/

  • Hi Paula. It is only natural to go through a grieving time, after all you have had a huge op that is literally life changing. I went through similar after my first maxillectomy and broke down in front of my surgeon feeling the same as you that my life was over and feeling so demoralised. My surgeon was absolutely fabulous and was so encouraging. It helped just to have him acknowledge my feelings. He recommended that I go to my G.P. and ask for some antidepressants short term. I did go to my G.P. and she was also wonderful and so supportive. In the end I did not get the antidepressants as I found that just talking really helped. I also found the support from this forum really helped me feel less isolated. It takes time to adjust to your changed circumstances but I can vouch that it does get better. I also had radiotherapy after the first maxillectomy. I also seriously thought about not going ahead with it and had a chat with my surgeon about it. He outlined how things might progress if there were still some cancer cells left. It did not sound appealing to me and I felt there was still so much I wanted to do with my  life.  It is a tough gig but I felt that after having the op that I did not want to waste the second chance I had been given.  It was highly recommended by my surgeon and I had full trust in his advice.

    It is now 5 years since my first maxillectomy and radiotherapy and 2 years since my second one. Life is good for me and I am able to do most of the things I was doing before. I have gone on some great holidays, volunteer at my local library, belong to a friendship group, go lap swimming, love helping out with my grandchildren. Life does start again and can be good albeit in a slightly altered form.

    Take it a day at a time. Get in touch with Macmillan and have some counseling as that will really help. This is a tough time but it will end and things will get better trust me.

    Sending your really positive thoughts

    Lyn

    Sophie66

  • Thank you , i am going to see GP when i can get in to talk about ant depressants, thank you for being there x

  • Thank you, maybe i should at least try the radiotherapy, thanks for being here x

  • Hi Paula, just caught up with this question on line.

    After my first maxillectomy I also had an obturator that didn’t fit very well hence the drinking without it in. Following radiotherapy when I eventually had a new obturator ( it was all very slow because of the pandemic) I slowly learnt to eat again. I have my bottom teeth and had 2 teeth top right so when confidence returned I gradually increased my foods. I’m not that keen on meat so only had a little ground up and mixed with steamed or soft roasted veg or tinned tomatoes. Yes potatoes pasta and other starchy foods do stick but just make sure you have plenty of sauce- even if it’s only tomato sauce or yogurt. I had a fabulous holiday in Gran Canaria with my daughter end of 2023 to an all inclusive. Because I could help myself to small amounts of food I tried lots of things- not just soups and smoothies but curry, veg casserole which I could sort of chew with my 2 teeth, as well as the obvious porridge, scrambled egg, salmon mousse, desserts with icecream and soft fruit. I could even manage soft mango and peaches. So don’t give up it takes time and a bit of courage but you get there in the end.

    Regarding radiotherapy- after my first big op only had radiotherapy on my neck ( like you I had a radical neck dissection for tumour in lymph node that had grown into skin) 3 years later the cancer returned in mouth where it originally started and where I hadn’t had radiotherapy!!
    So I know it’s awful but it helps prevent cancer returning. I’ve had 2 lots of radiotherapy in different places and not allowed to have any more. I got through it all and at times it seemed like it was never going to end but one gets through with support from family and friends. 
    Do you live in England? If so you’ve got the hope of a warm spring and a lovely summer to help you through. This time of year is so bleak it’s hard not to feel depressed. 

    4 weeks is such a short time in relation to the rest of your life. You will go forward but with a new normal. Life can be great again.

    Elaine x