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.
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.
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.
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.