Meredith's Story
Food, Glorious Food
It felt strange being out in the real world when Bill and I had our short break, and being summer, I didn’t feel like wearing a scarf to hide my neck scars, or covering burn marks on my cheek and chin. That would only highlight that there was something wrong, I thought. Lots of people walk around with scars on the outside - perhaps it is better to have them exposed than bottled within. I also had to be careful with exposure to the sun, sunscreen lotion and a hat must be worn at all times.
Different types of restaurants surrounded the hotel where we stayed, and the aromas were overpowering. I was dying to eat, being so desperate for real food, tired of milk-based drinks, soups and water. (Dying to eat whilst I maybe dying from something else? It all appeared incongruous!). I attempted a large king prawn, then another, and I found I could eat them, although so slowly, interspersed with sips of water to break them down to swallowable pieces. Couldn’t have lemon juice though, as anything acidic was absolutely unbearable to my mouth.
The next morning I awoke with a very sore mouth and jaw. Oh no, was something else happening to me? Cancer spreading? A bit of rational analysis brought me to my senses - those aches were from my weakened jaw muscles and teeth, unused to chewing, for quite some time. Paranoia abounds when you have been exposed to a life threatening illness.
The next evening, I attempted to eat the lamb cutlets that Bill had ordered. It seemed to take forever to demolish part of one cutlet, and without the continuous sipping of water, I would never have managed. The dry mouth from radiation treatment is so frustrating, as saliva is essential to moisten food for chewing and swallowing. It was so good to eat a meal that had not been mulched in the blender, into a gooey mess.
Ice cream for dessert? Now that should be an easy proposition I thought, being soft and cold. Disappointingly it tasted “metallic”, not as in those decadent days of creamy icecream topped with rich cream and chocolate. Now it was the reverse situation, where I had become one of those “cheap dates”, that thrifty people would like to invite for dinner!
“Oh, and don’t forget that she falls asleep easily on those painkillers, you needn’t bother paying for expensive theatre tickets” - if you want to know a good weight reducing diet ask me, consultancy fees may apply…
At least the ulcers in my mouth were gradually improving. Another cancer survivor had recommended a gel for the ulcers. She said the pain was worth it. Well, what the heck, nothing else can hurt me now. I nearly died with the pain, tears streamed down my cheeks, mouth open unable to scream, my breath sucked away. Forget that idea, I was off to find a kind pharmacist for something less painful.
The regime of oral hygiene won’t alter for the rest of my life. Such a wonderful prospect to look forward to, I humourlessly mused. The eternal dry mouth, the inability to eat everything that you could before, and swishing, brushing, rinsing…
My tastebuds will eventually grow back, though not with the same taste sensations. And there will be constant visits to doctors, dentists, and specialists for quite some time, until I am given the “all clear”. Four months post radiotherapy, I have found my saliva flow to be slightly increasing, and that horrible black furry tongue is slowly trudging away, into the ether. My appetite is returning, and I can chew food, although not a great deal.
That bottle of water remains constantly by my side, to aid speaking, and swallowing, as only small mouthfuls of food can be ingested. So much chewing tires the jaw, and also gives your body an extra feeling of fullness, whereas now I need to gain some weight. Certain carbohydrates are a problem, as they become attached to your teeth and gums, like cement! I still have food supplement drinks in between “meals”.
My head needs a helping hand when getting out of a chair, or turning over in bed, as muscles were severed in the radical neck dissection. I need to be aware of the numbness of the side of my head, face and chest, because I don’t feel hot or cold in that area. One day when I was putting moisturising lotion on my neck, I felt something strange near the shoulder that didn’t appear to have been there before. I wasn’t sure what it was, a small mole or a pimple? It happened to be a blood engorged tick, having a lovely feast on me, near where my jugular was once. Would it mutate into one of those creatures you see in Science Fiction movies, or perhaps glow in the dark from the radiation still in my system? Thank goodness it was found in time before more of its poison was absorbed.
It is frustrating to be debilitated, unable to lift heavy things any more, as one arm and shoulder are weak. As I cannot turn my head very well, driving a vehicle is awkward, especially performing a reverse park! You’d think that I had no visual concept of space, if you saw my parking.
In my research on the Internet for more in-depth information, support groups, or at least someone to consult about my predicament, I found nothing much in Australia for my type of cancer. Support appears mostly concentrated for breast, prostrate and brain cancers. It reminded me of that proverb, “To be seen and not heard”. Yes, appearance, boobs, balls and brain were more important than speech!
I was fortunate to come across an American web site (www.oralcancer.org) devoted to Oral Cancer, where I have met like-sufferers from all over the world. It is interesting to hear other’s experiences, what type of treatments they had, and how the treatments are performed in different countries.
Of course there are many things to beware of when searching the Internet. With careful sifting, though, I found helpful advice from the professional medical fraternity, and also the alternative community.
Now, I have to concentrate on my “new” way of living. I hope to remain a long-term survivor, that there will be no metastasis, or spread, of cancer cells to other organs, migrating along that “lymph highway”.