Thursday 24th January 2019

Eating After My Gum Cancer Surgery. Part Two. 2018.24.

Eating After My Gum Cancer Surgery. Part Two. 2018.24.

Now where was I?

Oh yes, about my eating after cancer surgery. Part One is here.

Let me tell you this eating with only 8 teeth on the lower jaw and one tongue has called for:

  • imagination – what might that food feel like in my mouth and will it be able to break down to enable swallowing
  • care of my mouth. Yes, this mouth needs even more oral care now. So it is brushing of my teeth and rinsing with a particular mouth wash after morning and evening meals
  • shopping lists for foods I had not previously considered eating but do because of nourishment and ease of eating
  • trying to remain creative with meal choices for me while I am very restricted. It is hard and I do get frustrated but I try to remember it is not forever
  • nothing that is pre-made or take-away (boo to having to make everything from scratch) unless it is a plain cake, a scone or yoghurt.

My mouth: at least the lips seal but it remains a challenge to get any drink into it. I use a ‘squirt’ water bottle and when having a cuppa – tea of coffee – I have a serviette under my mouth. Messy Me.

As the initial months changed from me being dependent on my husband for meal-prep and shopping to me doing this for myself it did give me freer rein for creativity and independence but in some ways in was harder. My husband eats very simply but from a different meal-base to me (and it has been like that even before my cancer) so there have been few shared meals….except for that one time, before I had surgery #2 and he made a Baked Lamb Dinner…which was so soft and delicious and easy-t0-swallow the memories are fresh!

MEALS & SNACKS.

BREAKFAST.

Once I learned that tiny slivers of toast do not equate with a satisfying breakfast, this long-time cereal avoider embraced weetbix and I am a two weetbix, sugar and milk girl every day.

MORNING TEA.

This is mostly Morning Coffee as I go out each morning around 10.30-11 for my daily outing. See more about that here. More often than not it is just a coffee but on some occasions I can add a treat. It takes me a long time to eat some of these and I often bring part of it home.

LUNCH.

If I have had a snack as above I will not have anything for lunch…because I will still be full and I cannot find the energy to try to decide what I will take ages to make and then ages to eat. It is true! However, I know the value of nutrition and need to give myself more credit for knowing actually what to select and eat it. The last few weeks I have found it harder as I have a 3rd surgery which has left me in some discomfort and even less room inside the mouth as a stent is in there where the implants will eventually go.

On the way home from Sydney when I saw the Professor recently my husband ate the cheese sandwich we took for him and I had a little kids’ yoghurt with the squirty-top.

AFTERNOON TEA.
Depending on how much I have eaten at lunch, this may not be anything or it might be a cup of tea with biscuits that can be dunked. Yes. Only those. I have tried a few but only these work for me: Malt biscuits, Scotch Fingers, Orange Creams. Even gave Tim Tams a go but the biscuit part was too hard for my mouth.

DINNER.

I have always cooked in bulk for me and for my Dad. I often made spag bol variations and beef casseroles and chicken ones too. However, I am someone who craves variety and I was O.V.E.R. anything with chicken once all of the chicken soup with vegies were done and even those with added noodles. I had low iron after surgery so determined to eat myself better (along with the iron tablets) I used red meat meals.

I made and still have in the freezer in small meal sizes for me: Beef Casserole and Veggies  along with smoothly blended mash potato & sweet potato frozen in small meal sizes to add on top. Spaghetti Bolognaise and Pasta Bake. For a change of taste, some Salmon. Cheese and Rice meals which are a comfort meal I invented ages ago. I have also cooked chicken mince with sweet and sour sauce to add to rice.

OTHER SNACKS AND TREATS A.K.A. BEATING THE BOREDOM.

Firstly what you need to know:

I cannot bite anything.

I cannot, at the moment, completely seal my lips.

I cannot use a straw because of how my mouth has been changed.

I can put very small bite-sized pieces of suitable food into my mouth, allow them to move against my lower teeth along with some encouragement from the tongue and then when I believed they are small enough and soft enough I swallow.

I have not choked (yet) but I will always have water bottle next to me when I eat.

I use a teaspoon for eating my meals & some snacks unless it is bite-sized as above and I can use my hands.

The softer and wetter a food is, the easier it will go down.

 

PUTTING IT INTO PERSPECTIVE.

I miss the many textures and tastes of so many foods  but I am also grateful to be able to eat after this surgery as not all of those having surgery like mine get to do that. Some have to eat permanently through their stomach or via a feeding tube. I do try to keep my whingeing to a minimum as a result.

I am so very grateful to the team who has brought me to this point. From Friday 23 February my trips to Sydney will be to Westmead Oral Restorative Services where my upper jaw implants are being planned. Currently the most recent surgery saw a large stent/mouthguard put over the area where the implants will go and it has made my mouth quite painful. Eating has been even harder.

I am over 9 months into my cancer journey and am hopeful that all that needs to be done will have occurred by the time May comes…my first year anniversary. We shall see! Meanwhile, I will be doing some more ‘out for coffee’ visits and eating as safely and nutritiously as I can.

Sunday Night Dinner: my invention…taco in a bowl!

And me on Sunday 18 February. Check out my top lip! My mouth above is swollen because of recent surgery to add more skin to my top lip (thank you) and added in there is the stent pushing the top jaw forward. Uncomfy, yes. Worth it. Hell Yes.

I hope that you have found reading both parts of my story of Eating After Gum Cancer Surgery of interest. My operations took place here at Chris O’Brien Lifehouse and the Team headed by Professor Jonathan Clark performed all three of my surgeries. I follow Head and Neck Cancer Support Australia on Facebook and Beyond Five

On Friday 23 February I visited Westmead Oral Health Services and the two men who are part of my surgical team as well, determined that I could do without the stent for the next 4 weeks and so this was good news. My photo updating the one above is here:

UPDATE: 

Unfortunately my relief was short-lived as when my surgeon saw the pictures of my gums on Monday 26 Feb he wanted the stent returned on my  visit on Thursday 1 March. At the time of publishing this post I will be two days away from having the uncomfortable hard plastic stent removed and first impressions made…..which mean teeth will take months from then but my prosthodontist says “we have to get it perfect, Denyse.” Sigh.

Denyse.

Linking with Kylie Purtell for I Blog on Tuesdays here, with Leanne here for Lovin’ Life Link up for Thursday’s Lovin Life Linky  and on Wednesday, with Sue here for her link up.

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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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