I am back…. continued from last week

I am actually just back from my annual snowboarding trip but I wrote this blog last week so I am posting it now while I gather my thoughts about the cat skiing adventure.

Generally I am doing well. Eating a lot but still with saliva and swallowing issues. Making good progress towards my new normal. The doctors say I am good. Now working on turning the blog into a book for new tongue cancer patients to read.

I am back eating three big meals a day.

I eat three good meals a day. Linda makes sure of that. But the meals she makes for us are lean and healthy and lean meals won’t help me gain weight. I have to get back to drinking meal replacement drinks like Boost, twice a day. And I can start snacking more. More nuts. More cookies, cake and ice cream, all the good stuff. I know, in some ways its a privlidged position to be in.

I am eating almost everything now. The good meals are pastas, most meats, fish, and eggs. My most favourite meal is ribs. They are tender, moist and solid enough to got down easily. And they taste great.

The hardest foods to eat are ones that are dry, like pork chops and chicken breasts. Chicken dark meat and drumsticks are better. Not as dry. Some other favourites are pizza and the old stand-by wor wonton soup.

I still have to stay away from spicing foods. Spices make my mouth explode. I also I find that lettuce is harder to eat so I just eat cut up vegetables instead of salads.

My taste buds seem go be working and I actually enjoy the tastes more than I ever did.  I was never much of a foody. Now I seem to  enjoy flavours more. I appreciate sauces. I add salt to food, which is new for me. I use a lot more butter now. Taste is good.

For breakfasts, I eat a lot of porridge and granola cereals piled high with berries and other fruits and hemp seed when I remember. I am also good with all the omelette and other egg dishes Linda fills with vegetables.

As long as they are moist, most meals go down.

I still have saliva and swallowing issues.

There is not enough saliva in my mouth to help push the food down, which is why food cannot be too dry. I often have to wash food down with water. There is a glass of Perrier water or Club Soda by my plate at every meal.

It is not uncommon to get a heavy dry gob of food caught at the back of my throat till I feel like I am going to choke. I don’t panic but I do need a quick slug of water.

As I have explained before, the saliva glands in my lower part of my mouth, the ones that produce watery saliva, may never work properly again.

After each meal, I often still have to clean my mouth. It takes a lot of swishing with water and spitting to get the gunk out of my mouth. I think this is a saliva issue too.

Another part to the saliva issue is that I get food caught up in all the cervices in my mouth, my teeth, my cheeks and even up in my nasal passages.  It is hard to know how saliva naturally cleans your mouth until you don’t have it.

The upper saliva glands that produce the heavier more mucus like saliva are normal but I think the mucus is what sometimes clogs food at the back of my throat and interferes with swallowing.  It happens because there is not enough of the watery saliva. This is probably my part of my new normal, but I it could get better.

The other thing that is still happening is aspiration. Coughing when water goes down the wind pipe. Usually it’s not so much of a problem but occasionally I will suddenly sneeze when I have a mouthful of food. When that happens I instinctively close off my mouth and the sneeze drives the food out through my nostrils and sprays over my plate. Then I am dripping snot and having to grab a napkin to clean myself up. Disgusting. It happens. Not often but often enough.

That said if you measure progress in the amount of Kleenex I use, I am doing very well. Food particles getting up the nasal passages seem to stimulate a lot of runny mucus and i blow my  nose a lot while eating. Gross. But this is getting better. Before I left on holiday I would use six to ten napkins or Kleenex’s a meal. Now it’s two or three. Sometimes none.

Have I explained all of this in an earlier blog?  I think so, but I am try ing to get accross that my new normal is a cluster of minor irritantsand frustrations. Nothinig too big, just  messy and uncomfortable.

Thankfully now there is no pain involved.

Oh yah, there is some pain. I get canker sores on my cheeks and tongue that kind of come and go. The pain is not to bad but it does interfere with my eating and drinking. Today they are gone but I expect another one soon. Apparently they are a symptom of my lack of saliva.

Are these problems going to go away over time? We don’t know.

Back to normal?

I saw may Radiologist, Dr. Debenham, recently and he said he expected continuous improvement in my eating over the next few months. So, it’s not my new normal yet.

He also looked at my latest CT scan and put a scope down my throat today.  I am cancer free and doing very well.

He also talked about how big my cancer was when he first met me. The cancer was 5.5 cm long, and 4.5 high and wide. Big and growing fast. It grew another cm before they radiated it. He also said they never had any doubt that they would get it with radiation and chemo.

Apparently, he will be taking care of me for as long as I live in Edmonton. I see him every three months and get a CT scan every six months for the next two years.

I also went to my support group last Tuesday and realized that I had sort of “graduated”. The stuff they were talking about had happened to me so long ago that I had forgotten most of it. The sharing of experiences just brought up bad memories for me. Linda was there too and she felt the same way. It seemed I was there just to let the guys know that it does get better. This too shall pass.

On to the next thing:

My new goal is to get this blog published in a book format. I will be working on that for a while. I will probably self publish and that will be interesting. But it will be a lot of work and expense to get it done. I hope I get help marketing the book so the people who might benefit from reading it, tongue cancer patients and their care givers, actually find out about it. And I hope whoever reads it does get something out of it. Personally, I sure got a lot out of writing it.

Publishing and marketing a book is going to be a whole new adventure. I am up for it.

There is no quit in me.

Next blog is about my snowboarding trip which has already happened. I just have to write it up.

11 thoughts on “I am back…. continued from last week

  1. Great blog John! About the sneezing with a mouth full. Just keep the napkins at the ready and let the sneeze out, instead of stifling it. Much better out of your mouth than you nose!! Very happy to see how far you have come. Much love.

  2. Hey John …..good to read that you are doing so well. You looked good when you were here. It all sounds positive.
    I am going to use my sisterly advice and say that although you feel you need to gain weight (and you do) sugary foods are not the way to go. Find some other way. All of our research into the nature of cancer cells points to sugar being what cancer cells feed on. Yes, we all get natural sugars from various foods and no, we as a society will never stop indulging in sweets (life would be boring) but still…..lean and mean is good. I will leave it to Linda for the research into what will add fats as fat is not something I am looking to add to my diet (am I still trying to rid myself of excess). We all have cancer cells in our bodies and we all SHOULD stop feeding them with sugar.
    Okay….I am done.

    1. Shenta
      I am sure you are right about the sugar. It’s not good for us in the amounts that we eat. The dietitions at the Cross Cancer Institute do not share your concern. They just want us to up our calorie intake. So I will take your advice and do as I always have. Consume sugar in moderation.
      Thank you for calling me on my shit. Like only as sister can, and you always do. haha.

  3. I encourage you to get a water pick – works better than swishing and they now come with lots of fun attachments!
    Your blog has been so real and so full of hope I am glad you will put it in a book! It will benefit many people – there is always comfort when you know you’re not the only person to go through a particular cancer! Aina was a real inspiration to me – and oddly enough on my 2nd lung cancer surgery I had the same surgeon Aina had! Hooray for you – hooray for Linda – it’s been a honor to witness your “no quit in me” amazing attitude and outlook!

    1. Patty
      I have really appeciated your participation in this blog and in my recovery over the last year. It has meant a lot to me.
      I am sure the fact that you have gone through your own cancer experiences has helped you be a mentor to others with similar challenges.
      Thank you for being there for me.

      1. Trust me, John…. if you had entitled your blog “nobody has had it worse, and OMG I can’t get through this” I wouldn’t have read it!!!

  4. Finally that book . . . . I can perhaps help with the cursed “hows” of book publishing although since my computer problems last month, the references may be gone!!

    1. Send me what you can Anne. I have been researching for a while now but have not made any commitments yet. Other than to know I am going to do it.
      Thank you for continuing to read my blog and for the caring advice over the last year. Much appreciated.

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