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 https://thefoodmanifestoblog.wordpress.com/2019/03/05/nil-by-mouth-and-by-that-i-wasnt-expecting-6-months/

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.

Regional Travel, Food and other substances …

 

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No plastic here

I love the regional flights in Vietnam, it is a normal daily occurrence for many I have discovered in this wonderful city. “Carry on” luggage helps and makes it pretty much pain free. They are cheap and so far reliable. My last domestic trip to Hanoi booked at the last minute. The thing I do notice on these internal trips whether train or plane, is the kindness afforded by the locals. As a solo traveller, I must at times look totally bewildered and out of place. On more than one occasion I have been offered food on these transit journeys. Food, the universal language and the reason for The Food Manifesto … as I write this in my local cafe, pondering the variety of food on offer, the distinguished Vietnamese man sitting next to me has lit a very strong cigarette (and no I dont mean a Marlboro Red)  As I breathe in the perfumed fumes I’ll attempt to get this blog finished! ahem …

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Photo by Pixabay on Pexels.com

A train ride from Sapa last year was taken over the Khmer New Year and seats on the train were at a premium. My seat although facing backwards was one of the last available and for many hours we rocked along the tracks with an assortment of children, families and luggage. The only westerner on the train I was eventually taken pity on by a lovely family who offered green mango and salt. At least I think that was what is was, I gratefully took her offering and munched through it until my destination. There was a food cart on the train but my stomach was not up to the menu and if I was being honest my knowedge of Dong ( Vietnamese currency).

Similarly the trip to Hanoi last weekend -my return flight a young lady 3 seats across offered me a bunch of Longan fruit ( not pictured here ) she passed the fruit and rubbish bag and serviette across 3 people to me. I must look like I need fruit, it was very gracious of her and she never spoke to me or made any attempt to communicate.

Kindness comes from the most unusual places. I was grateful to her,  I was leaving my friend (again) and was feeling fragile. I am to learn this might be common place until I establish a routine.

Food here in Vietnam seems to turn the economic wheels. I had Vietnamese pizza for the first time the other night which arrived on thin rice paper and topped with all sorts of goodies. It was delicious, light and very inexpensive.  I sometimes feel very overwhelmed with the street food, there is so much I do not know nor understand and without a “local” to help, it’s very much trial and error. I am pretty adventurous but I must admit I am careful, having been sick a few times in Asia it is a horror if you get it wrong.

Airport food is also very good here and since being here one of the best Beef Pho’s I have had was at the Hanoi airport. For an Australian that’s un heard of.

Experience tells me to stay away from peeled fruit, and salad ..anything washed in water and distinguished Vietnamese gentleman smoking perfumed cigarettes in your local cafe. I have survived another day.

 

When your heart sings and other karaoke lessons.

Six years it took me to take the plunge. Six long years of dreaming, scheming and planning. There was romance involved, there always is, but somehow my heart sang stronger and longer in 2017 and it was decided.

At age 52 – I realised that life was indeed marching on and that if I didn’t start to tick those list items off I would have successfully spent a greater portion of my life paying a mortgage with a career that I was pretty much non plussed about. Everything became an indicator of all the reasons I should make that move, and so having successfully completed a 2000km motor bike journey through Vietnam and Laos in December 2017 (and a typhoon) Up your leg, up your leg! 2000 kms the plan to relocate emerged. Read more