Monday 18th June 2018

Eating After My Gum Cancer Surgery. Part One. 2018.18.

Eating After My Gum Cancer Surgery. Part One. 2018.18.

I thought it may be of interest to readers if I outlined how I have been able to ‘feed and nourish myself’ since last year when my cancer was cut from my upper mouth, gums and jaw and I was left with…not much! Actually it was a miracle of science how my upper mouth was made from my leg and there is much to be read here for those who do not know my story.

In the months leading up to my eventual cancer diagnosis my upper gums made eating difficult as they were sore, and with a new denture it was hard work. I guess in some ways it was practice for what was to come. I could not really crunch or bite down on something like an apple or chips. I could have smaller cut up bread-rolls but not bite into one. Mmmm. I had forgotten this and now I am writing it I can see why I could not even eat steak or a cutlet. Foods I cannot eat now but am longing to have again!!

Happy Snap?: my 67th b’day: 30/11/16. Upper teeth seen are those made by a bridge/crown over 5 of my front teeth. My mouth was already irritated in the back of this area. Had been for at least 2 years.

 

I recall being quite concerned about how I would deal with feelings if I could not eat. Yes, I like to do that..and, over time, found that I still can but I am actually dealing with feelings better than I used to! Who knew!

After surgery on 6 July. I was told I would have a drip and a feeding tube inserted naso-gastrically and that I would not have any liquid until at least 7 days were up so that the area that had been added to my inside of my mouth was deemed to have sealed and be ready. OK. I did not argue but I did not like the feeling when the feeding tube would fire up and deliver the prescribed nourishment. In fact I used to think it might be regurgitated but it never did. After I left ICU and was in my own room, the amount I was fed ramped up and I had to change my attitude towards this feed. I decided I could deal with the amount of time – up to a few minutes it took to feed me because it was helping to heal me.

Feeding Me To Heal Me became quite the mantra which I used a lot at home too. My psychologist had told me that patients who have head and neck surgeries have a changed relationship with food and that it cannot always be enjoyable as it is like a medicine we need to heal.

I came home on the 10th day and my dear husband already had shopped with the list of what he knew I could eat and we thought: YES, we have got this! Not so. You see, as the patient who was still very much learning to eat again, I thought I could direct my husband to sort out the food I could eat. It did not work well as I was still highly emotional, on a very strong anti-biotic to ensure my leg wounds did not become further infected. In short, adjusting to eating when I couldn’t really eat (and was hungry) and found that my gut was rejecting everything via diarrheoa meant my early days (and nights at home) were a bit challenging. And I was wanting to do stuff for myself. My goodness. I know.

My hospital dietitian had sent me home with samples of high protein drinks, I was given sheets with lots of information about soft and pureed foods and I am a compliant person. I must do this. Right? Well, actually my body said NO. My GP told me just how much I needed to let my (IBS-centred) gut settle after being empty for over 8 days and it needed to come back to balance. His sensible approach saved me and whilst I appreciated the knowledge that was shared with me it was time to eat what I could and when I could.

I admit that with having my right leg encased in a boot and the stitches from surgery had only just been removed as well as two large flesh areas that needed healing I did my body no favours by deciding to make some chicken and vegetable soup one morning. You see, I have always been the cook and I found that if I had to instruct my husband our marriage might not last (OK, an exaggeration) and I needed some sense of independence.

Once I had that soup sorted and blended and in the freezer for future use, I agreed to stay out of the kitchen…and my darling husband became the best every toast maker and cutting it into teensy tiny pieces to see if I could eat it. He even made me vegemite toast just so I could lick the taste of it. I learned that yoghurt and honey go down easily and they helped me when I had to take oral medication as did jelly.

The early days and weeks were hard but I was also buoyed by the fact that in all likelihood my cancer had been completely removed. On a follow-up visit 3 weeks after surgery both the Professor and the Associate Professor agreed with no recommendation for follow-up radiotherapy as it has very brutal effects on the face and would change the view of cancer has gone from 95% to 97.5%. 

Part Two will be more on how I gradually learned more about the how and what I could eat…and how it is so vital that we both nourish ourselves with food as well as enjoy it.

If you have any questions, please ask in the comments. Happy to respond.

Denyse.

Joining in with Kylie Purtell here for I Blog On Tuesdays and with Sue here for her Wednesday link up & Leanne’s Lovin’Life Linky on Thursdays here.

 

 

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Comments

  1. Your smile is so contagious. Keep it up my friend.

    • Thank you. I cannot wait for it to be back in full. Although there is a part of me that thinks it will take some getting used to! You are a kind cheer-leader for me!! Denyse x

  2. I’m so in awe of your resilience and the way you keep getting up and giving it a go. I know you have tough days and there will be tough days ahead, but I have to say that watching the way you’ve tackled this has been really humbling and inspiring. You, together with my Mum, have been a fabulous example of how to keep on getting back up and moving forward, even in the darkest moments. I can be a fussy eater at the best of times, so I can’t imagine how challenging not being able to eat properly has been, but I’m so glad that you’ve had the support of your husband and doctors to help you find what works xx

    • Thank you for your kind and uplifting comment Kylie. Yes I sure remember what your Mum went through and look at her now. I am getting much closer to my ‘end of treatment’ and that feels good. Just a few more trips to Westmead and as long as my gums heal and do what they are supposed to, and of course the mandatory cancer checks as per 5 year guidelines. Food plays such a big role in our lives of course and to have many taken ‘off the list’ because of this is somewhat hard but I have surprised myself with my creativity and patience. Thanks so much for your lovely words. Denyse x

  3. I love food so much – my biggest fear is not being able to eat, or at least eat what I want! I had a ‘taster’ of a limited diet after my thyroidectomy, but it was my throat not my mouth that was the problem. I find your courage and resilience so inspiring and how you are able to rise to every challenge as you meet it. I know it hasn’t been easy, but it’s amazing how far you’ve come emotionally and physically since you started on this “journey” (for want of a better word) and I’m both honoured and humbled that you’ve taken us along for the ride. I know there have been some tough days and some bumps in the road, but I hope you’ll have happier, healthier, chip-and-steak-ful days ahead!

    • The things that bind us hey! I remember sitting with B before I even had surgery asking the question “how will I comfort eat when I am going through all that I am facing and can’t comfort eat?” It really bothered me. However, the unknown of tube feeding and all that was dealt with, as was the introduction to soft foods. And guess what I found I could let small pieces of chocolate melt on my tongue and interestingly my need to eat emotionally has diminished!

      I recall a ‘funny time’ in my first weekend home when all I could think of was maybe a chocolate paddle pop. At the same time my gut was playing up and I couldn’t swallow tablets so poor B (on the second day I was home – Sunday) was out searching for immodium I could swallow. He eventually found some AND a paddlepop and proudly offered it to me. It was bubblegum. I hate that flavour. It is still in the freezer. However, long term much better communication between us and me being realistic with what I can and need to eat I reckon I have done well. And there is a carton of chocolate paddlepops in the freezer. I eat them cut up into a cup and with a spoon.

      I am incredibly grateful for what the surgeons and dental specialist have been able to do to make me a new mouth. I am ‘bored’ with the trip to Westmead to an extent because it is time consuming sitting in that chair ( and I need distraction so will take my earbuds this week).

      Thanks so much for support as always. Denyse xx

  4. The NG tube sounds so awful! I don’t know why that icks me out more haha. I had an accident in late primary school and had to have food dripped into my mouth for some time. I should have been in hospital but that’s a rant for another day. I remember the milestone of getting to be able to lick custard off the spoon myself. Win!

    • It icked me out but in the end accepting it and knowing it wasn’t forever helped me. I was just so glad I didn’t need the tracheostomy after surgery. Imagine NOT being about to talk/breathe on your own. You poor thing having that happen to you as a kid. Isn’t it amazing how the little things mean a lot.

      That was how I felt (and sounded!) when I took my first sip of water after a week. WOW I said.

      Denyse x

  5. Goodness Denyse you have been through so much but isn’t it wonderful to have such a supportive partner in your husband. I love my food so I’m sure it would not be easy to go through not just the pain but also not being able to munch into a huge steak. Thank you for taking us on your journey with us and showing us all that is involved. You are going great guns so keep up the inspiration! Thanks for sharing with us at #MLSTL and have a beautiful week.

    • Thanks so much Sue. I think, from what I have learned on this cancer journey, is that it is quite surprising what we can deal with when we have to.

      I recall initially being told (by the specialist dentist) that I would be on liquids for 6-8 months.

      My reaction was ‘no way.’ And it was via the dietitian in the hospital who taught me some good ways to soften and smoothe foods so they can be taken into the mouth and swallowed easily along with my ingenuity once I got the hang of it that I have been able to eat a relatively wide range of foods this way.

      I am looking forward to chewing and crunching again of course.

      Next week is Part Two – what I am up to now.

      Denyse x

  6. I’m so glad you shared an insight into all this. I found it interesting to know what it has been like for you. But I know that there will be people out there who go through a similar experience that will benefit from your share knowledge. Excellent work, Denyse.

    • Thanks Melissa,
      One of the reasons I shared is for others to see and notice what can be done. I may not be eating in perfectly nutritional way but I do my best to ensure a range of foods within my limitations every day.

      Believe it or not, even cake gets boring when you have too much of it.

      Part Two next week is about what it’s like now.

      Denyse x

  7. You’ve been on an incredibly difficult journey Denyse – I don’t think any of us had any idea how much you’ve been put through and how much you’ve had to adapt to get to the point you are today. You’ve been so positive about it all but it must have been so difficult and painful for you. Good on you for all that you’ve achieved and for being so honest in sharing it with the rest of us. Thanks for linking up with #MLSTL – I’ve shared this on my social media x

    • Thank you. I do believe it has taught me a lot needing to rise to manage so much in a relatively short period of time. However, there are days, and now is one, when I would like it all to be done. D.O.N.E. thank you very much!!

      I have shared my story to help me deal with what is happening and has happened but also for anyone else who “may” get a diagnosis similar to mine and can know they are not alone.

      I do not know of another person who has had this surgery yet I am told my surgical team does at least one of the surgeries I had a week!! Wow.

      I stay in touch with Chris O’Brien Lifehouse and Beyond Five on social media and they are free to use my posts or excerpts if they choose.

      Thanks again for your support and kindness.
      Denyse x

  8. Wow what a journey you’ve been on Denyse! I admire your honesty and resilience at all you’ve had to deal with and wish you well for a full recovery. Not to mention eating crunchy food again. Connected here via #mlstl linkup and shared on social media.

    • Thanks so much Debbie. Yes it has been and continues to be ‘quite the journey’ alright! It has been made better by the support and care of my on-line community and this buoys me a lot!

      Denyse x

  9. Oh God blessed you with a sense of humor and a beautiful smile. Thank you for sharing your journey with us. It definitely gives others hope and inspiration.

    • Thank you for your kind words. I blog about this to help me connect with others but also if something here helps another in a similar situation then that can only be a good thing! Denyse

  10. What a difficult journey for you. I hope the worst is along way behind you and all the best for a full recovery

  11. I can’t imagine not being able to eat for this length of time. It must have been so frustrating. A few months ago I had two dental implants inserted into my upper gums and I wasn’t able to eat for two days and that was tough! I still can’t bite properly but I manage to chew with my back teeth. You have done an amazing job of feeding yourself and getting your health back on track. Your before and after pictures are proof of this. You’re an inspiration. #TeamLovinLife

    • Thank you Kathy. I have thought all along that it is amazing what we humans can do and manage when we have to. It does not mean I don’t have whingey and tired days because it can be frustrating eating in such a limited manner but I have learned to adapt which sounds like what you have done with your new implants.

      I am not counting on mine being great to use for some time after I get them and I still have close to 2 months for that.

      Denyse x

  12. I do understand the feeling you had when confronted with the need to eat to nourish yourself, as opposed to enjoyable eating. You’ve done so well. I hope your remaining couple of months before you can chew again won’t drag on seemingly forever.

  13. I completely get the ‘how do I deal with feelings if I can’t eat them?’ thing Denyse. As you know, after my weightloss surgery I had something similar. I was on a very restricted diet before surgery and about 6wks – 8wks after. And now, my stomach is still smaller. It’s able to be stretched of course but I need to work more on not letting that happen.

    But… people underestimate how traumatic the ‘not being able to eat’ normal stuff can be. I was lucky in that mine was time-limited!

    xx

    • Thanks Deb you sure do have quite the understanding of what was/is a difficult aspect. Like you, I guess, once I can eat “all of the things” I hope to be moderate in this as I would like to stay the size I am now. Especially because I have bought all the new clothes..but of course, because I feel more comfortable at this size too.
      Denyse x

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