Do I have to eat ? When the dreaded stomach peg becomes the easier option, and you realise you are never eating pizza again.

Before I left Australia I had been suffering a constant sore throat, I put it down to stress and the fact that I was upheaving my life to go and do something else. I had assured myself that it would disappear and after five days on Phu Quoc island I realised I wasn’t getting better.

A heavy chest cold had settled in too and my ears hurt, I was swallowing razor blades and well, I felt like hell. My other blogs posts explain fully as to exactly where I was health wise

So fast forward 9 months and I am back home in Australia and trying to make myself eat and not rely on the stomach peg that was inserted back in December 2018. The life giving food peg and administer of all things water, medicine and food. Using the peg is relatively easy but you have to learn how to fill syringes, get them on to the end of the peg, keep them kinked, don’t push too fast or it all comes out every other orifice. Wash the syringes, have towels and wipes for mess and know that it will get all over your clothes if you are not careful.

The peg dangles (literally) from your stomach and gets in the way of everything. I tuck mine into my undies and apparently when they inserted mine they made it very short compared to others. My biggest issue was breaking the ‘seal’ that plugged the feed tube. I have had to go to Gastroenterology Department two times to get them to replace it. Apparently they had never seen this happen before, and suggested I was being too rough with it. Given I can’t turn the peg every day as I should, much like an ear ring … I doubt I am too rough on it. I threatened to go to Bunnings and get my own if they didn’t fix it. They fixed the problem by cutting the seal of a new peg and giving it to me. I am now month five with my peg. The last week or so it has become the only way I can take it anything either water, food or meds. I am also about to go into week 12 post treatment, 3 months since the chemotherapy, radiotherapy finished and 6 months since my surgery.

The past couple of weeks I have noted rapid changes in my skin texture, jaw numbness and the width to which I can (or cannot) open my mouth, also known as Trismus. The pain if I consume anything is excruciating. I have spent days in tears and I can honestly say I have never known pain like it. This is the after affects of radiotherapy. It’s not swallowing that hurts but the sensitivity my gums experience when anything other than ice cold milk is in contact with them. I am not eating anything now, I do try, but it ends with me doubled over in pain and in tears. It’s so debilitating and the small amount of social contact I had with the outside world is now nil. I can’t manage coffee or smoothies out side of my own home.

You should be able to get three fingers in between your teeth … I am a long way from home!

So I sit here on a rather dreary Sunday wondering whether this is ever going to get better, the solitude I am some times grateful for, but mostly I spend my time trying to heal, all my energy and focus is on me and getting better. It would appear that there is no end to this awful disease.

Hell of a way to lose those pesky last 5 kilos! Since we started the treatment I have lost 10 kilos.

With this being my third month post treatment I also get to have another PET scan ($$) and it’s my first to see whether they “got it” … there are no guarantees with the scanning, you could still have cancer and it’s not picked up. So I decided that they have got it all and that I am cancer free. What else can you do ? Next week too I am going to give cold laser a go to assist with the dewlap forming under my chin as a result of having 30 lymph nodes cut out. Accupuncture seems to alleviate some serious saliva issues through stimulating my saliva glands, and thrice daily face and neck stretches. Early days they keep telling me, early days.

Published by The Food Manifesto

I am a life explorer, food forager, choice crusader, eco educator, leader, teacher and head and neck cancer survivor. I've loved food all my life, my mum taught me good eating habits and how to cook nutritious food with loads of flavour. As a little girl I lived next door to a wonderful cook Pat Heidrich, I watched as she rolled pastry, filled cupcakes and prepared light as a feather sponges. My love of licking bowls and beaters started early. I grew up and explored my passion by studying cooking, trawling food markets, buying good equipment and experimenting with the tastes and cuisines I love. This blog is intended to share my passion, inspire you to try ...and fail, provide tips and every day good advice about cooking, shopping for ingredients, and planning menus for you, your family and friends. What's your food manifesto? talk to me about how I can help you.

5 thoughts on “Do I have to eat ? When the dreaded stomach peg becomes the easier option, and you realise you are never eating pizza again.

  1. Sounds like a crappy day you have had babe and I wish you had called me. I want to say and do whatever it is you need to get through, but I also know there is nothing that I can probably do to help you right now. Come out at 9am tomorrow morning to SIL. I know you feel good when you exercise and be around people who care and love you. Chin up, we are all here for you. Keep leaning on us.

  2. I can’t imagine what it’s like living like this Yvonne, but I’m here in spirit thinking of you and sending healing thoughts your way everyday ❤️

  3. Jeepers Ding – what a horrendous whirlwind you are on. Cannot imagine the pain and despair you must feel, your strength to battle through is the true testament of your character. Sending lots of love xx

  4. Hi this is Hazel aka RadioactiveRaz I am 10 month post radiotherapy for tonsil cancer.Hang in in there I tend to say baby steps and some days 2 steps forward one step back. I didn’t have a peg my oncologist said I would maintain swallow nut had to agree to a nasal feeding tube which I had for 6 long weeks. So you do have my sympathy,just so you there is light at the end if the tunnel ,some days good some bad yesterday was a good eating day jacket potato’s Heinz beans and crustless home made quiche not gourmet food but I ate it all. Today did a mostly veg curry with some port in it for hubby miserable failure for me so will leave it a few weeks and try again. Eating plays such a big part of our life and I do understand where you are ,meat is still difficult for me and many others who are in our position,chicken is a deffo no no just too dry no matter what you do to it. Fish some days ok some days not. But your taste will eventually return I never lost mine double edge sword as I still couldn’t eat many things because if the taste ,this cancer lark takes no prisoners. Sorry to ramble think you’ve read my blog hope it helped even if only made you smile .
    Take care Hazelx

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