Hi Phil,
A long, scary and quite overwhelming journey ahead of you. I'm amazed that so many people go to their appointment every day. It takes great courage. It's definitely not for the feint hearted. I saw young and much older patients waiting for radiation. Some were very, very sick and had already probably had chemotherapy. Some were hospitalised as the treatment was too much for their bodies. I always went to appointments earlier than I needed to as my husband was anxious to get me there and get to work. It was good as they'd often fit me in quickly as I was a quick and able patient.
There's a ramp that goes downward toward the main hospital that you travel on to get out. My husband would sit on a chair at the bottom of the ramp and wait for me sometimes. Once, he wanted me to sit next to him and read something in the paper. HELL NO!! I was on a trajectory to get out of the hospital and there was no way I could sit for a minute. The nurses told me that if the skin on my neck broke I would have to come and see them to have it dressed. HELL NO!! Hell would have to freeze over before I did that.
I have never been so grateful, in my whole life, that something was over. As you know. finished treatment last Wednesday. Thursday, the radiation burn travelled further along my neck and Friday too. A good weekend. Monday would be my new normal and it just wasn't. It was the same sort of thing. Cream on neck, swilling horrible stuff in my mouth to help it heal and eating almost northing as no appetite and no taste buds. I did buy petrol for the first time in 9 weeks. Bit of a bonus money saving program but one I wished I hadn't had.
Today, I've had a pretty good back to normal. I actually went to a big shopping centre nearby and bought fruit, vegetables and baking stuff. Parked my car miles away from where I needed to be and like my normal self, managed to lug all the shopping bags back to the car without stopping. Made me realise I am much stronger than I thought right now. I think normal means doing small tasks that allow you to trust your body again. It's similar to a betrayal by my body but I can't break up with it. We need to move on and trust that every day will get easier.
Normal will also mean just enjoying the smallest of things. Dogs curled up, sleeping around you while you type away to your C friends. Rain on the roof, bit of snow is good too but we didn't get any. Relationships and friendships are really important too. Food is not a help right now and I certainly hope I can get through the next few months without eating much. I am almost sick of chicken broth. Almost. Have found a baked potato in its skin and baked beans in sauce help to make it go down. Not something I would have eaten before. I cannot look at a boiled egg ever again. Icecream tastes like nothing. Can't eat any more jelly.
I do have one good thing to share with you. My father had many of his fingers blown off dismantling a bomb at the end of WW11. (That's not the good thing). It was difficult for him to eat with a knife and fork. He mainly ate with a fork or spoon. My mum cut everyone's meat up really finely, always. There are a couple of Dutch dishes that really worked well for this. One is a big pot of potatoes, carrots and one oinion - boiled to very soft. Bacon fried in a frypan with butter but you have to take it to the almost crunchy state. You then pour the bacon, butter and bacon fat into your drained potatoes and carrots. Mash together. We used to have Rookwurst with it but over the years the taste of it has scaled right down to nothingness so we don't buy it anymore. If I make it, I usually make t-bone steaks or eye fillet to have with it. You would not believe how good that onion with the potato and carrots taste. My parents ate that all through the year, possibly weekly. (They never adjusted their diets to Australian conditions). I'd make it once possibly in winter and my children loved it. Another variation is swapping carrots for endive. It is now one of my grandchildren's favourite meals. When my eldest son moved into his own house with his wife, the first dish they cooked was endive and potatoes and invited us over for dinner. Very sweet!
The reason I'm telling you this is that I made a big pot of the carrots and potatoes. It was divine. For someone who had not been able to eat anything very substantial, it was excellent and I felt full. No meat with it but I didn't need it. This dish is even better fried up the next day for lunch. I would have had heaps but some of the grandchildren were very hungry after school and polished it off. It's called Hutspot. Do try it in winter. It will warm you up and stick to your ribs.
I hope normal comes to you soon Phil. You'll get there and I am glad Gen is going with you to make sure you get there.
