Loss of Taste

Loss of taste is a horrible experience. It is so hard to explain or to even imagine. You can cover your eyes and imagine a loss of sight, block your ears or nose or wear gloves to experience the loss of your other senses. There is though, no easy way to grasp what it is like to lose your taste.

I have written before about how I have Recovered Taste After Radiation. It was not easy to regain my sense of taste after radiation have wreaked havoc with my throat and mouth. My tongue seemed like a quivering molten mass. Even these days it is very different. It quivers as though fearful some new disaster may befall it.

Recovering After Cancer

Taste loss is very hard to endure. You must face it every meal, every day. Clearly I am not alone in this struggle and many others are also lost their taste after radiotherapy.

We all know that cancer treatment is hard. Very hard. But it does pass.

Life slowly gets back to normal and the body heals. It can even seem like it never happened. Just a dark memory. “Surely I was never that sick. Surely life was never that excruciatingly hard to bear”. Still, I know it was!

I took photos of myself during that period. I’m really glad I did. They are a very personal memento.

The burn marks from the radiation, the stomach tube for feeding, the gaunt look in my face, the bleary eyes. It seems like another person. In many ways I wish it was.

In other ways though I am glad I experienced cancer. It changed me as a person. Cancer changed my outlook on life. It made living well far more urgent and valued. We should never take life, happiness and health for granted. That is a valuable lesson that I hope I have learned. There really are some benefits to having cancer as I wrote about in The Beauty of Being Wretched.

Taste Loss

I am learning how many others are still struggling with their loss of taste. The main traffic on this blog seems to be on taste. The comments are touching. I can feel the anguish caught up in the few sentences others write. A whole load of pain and hardship and the hope that things will improve.

Here I feel odd because I am lucky. My taste has recovered. It is not perfect. Far from it. I used to love nuts, cashews, home made bread, cake and many other things that just aren’t the same any more. These days I love teriyaki fish. I have tracked down all the best places to have that dish for lunch. I have it most days. It just tastes fantastic while many other foods aren’t quite what they used to be.

Recovering Taste After Chemo

I have a few friends who have not recovered their sense of taste near as well. While I rate my sense of taste now at about 80%, I have another friend who rates hers at less than 10%. And that is four years since her treatment. I feel very sorry for her. It must be a terrible thing to endure the absence of taste and the loss of the enjoyment of food for that long.

I remember what a great moment it was when my taste started to come back. I wrote about it in Today I Tasted Eggs. It was a huge moment in my life to know that despite my fears, I was going to recover taste after chemo. Until then, I simply was not sure. Would I be lucky and have taste recover or was I destined to have to just force food down for the rest of my life? That is a hardship that only those who have been through it can understand.

My wife was beside me throughout the whole experience and tried so hard to find foods that I enjoyed or could swallow easily. Despite all or her help and concern, I know she still found it hard to understand just how debilitating that loss of taste was. It was really hard. For those who have been through cancer and radiation, taste recovery becomes of great importance. It becomes the new hope, the new goal.

What Helped Me

I wanted to write today about what helped me to recover my taste.

One simple thing was to keep my mouth moist. Chewing gum was helpful in the early days as my mouth would seem to continually be dry.

Drinking lots of water also helps. I find that if I drink lots and am well hydrated then I seem to have more saliva. A simple tip here is that I have a large bottle of water in the office and I make sure that I finish it off each day. That is in addition to the water I drink with meals and the coffee I drink in client meetings. I also also ask for a glass of water with my coffee. I often drink a second glass of water even if I don’t particularly feel the need. In short, I work hard each day to keep my hydration level high.

I have no idea how much this focus on hydration changed things. Maybe I would be in the same position anyway. But I do suspect that drinking lots of water everyday helped my saliva glands come back to life and to resume working in their modified way.

Things are not perfect of course. They never will be. I still can’t eat things like nuts, bread or cake without a glass of water beside me to wash things down.

I am very careful to avoid choking too. I realise there is a much higher risk of something getting lodge in the wrong place and an emergency swiftly arising.

I take zinc tablets fairly regularly. A couple of tablets three or four days a week. I have also read that magnesium helps recover taste. Maybe it does and I have taken some. but it is really zinc tablets that I have consistently taken.

I used to love Thai food, but could not eat it for ages because the spice burned my mouth. The mucous membrane inside my mouth was just too sensitive.

These days I prefer Japanese food. Something I was not particularly interested in before. I think it is because of the umami flavour in Japanese food. Umami is now recognised as the fifth taste, in addition to sweet, salty, sour and bitter.

Again, I have no science to back up why my food preferences have changed. I am just reporting it as it is.

My Sincere Hope

If you have lost your sense of taste after chemo and radiation then I sincerely hope things improve. It is a lone struggle for each of us. Our own destiny.

However, you are not alone. Others feel your pain and hardship and I know many others would join with me in wishing you a full and complete recovery.

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  1. Shirley Remington says:

    I have enjoyed reading your blog very much. If you would be interested in another story I would be happy to forward mine.

    • Mark Toohey says:

      You are more than welcome to contribute comments and your story Shirley.

      • Mark,

        I am 6 years out of rad chemo treatment for cancer of lower tonsil. I have had recent positive response in my taste by using triamcinolone paste. It has provided more improvement than any other treatment so far. It is fun tasting and remembering tastes.

        • Mark Toohey says:

          Glad to hear this worked for you. Just to help others better understand, do you have any idea what is in this paste or if it has any negative side effects Ken? Was it recommended to you by your oncologist?

  2. Mark thank god i have come across your article its a big comfort, i had 5 weeks of radio at the base of my skull which has affected my taste and saliva it is two months ago since i finished and my taste came back a little but havent noticed any improvment since a few weeks ago, in your opinion do you think im in this for the long haul?

  3. Vincent Aragon says:

    Hi Mark, I discovered your site about three years ago when I was about 6 months out of chemo/radiation for base of tongue cancer. I always meant to leave a comment but never got around to it. Anyway, I began to lose my sense of taste within a day of my first chemo infusion (I had already had a round of radiation as well). I had something to eat and I immediately noticed that it lacked flavor and tasted like cardboard. I wasn’t sure what was going on but within a few days I made the connection between the cancer treatment and my almost complete loss of taste. I did not have a feeding tube and forcing myself to eat was brutal, not only because of the pain but also because the sensation of food in my mouth with no taste was nauseating to me. I lost 47 pounds total. I finished treatment after 6 weeks and was still in a lot of pain and still no taste. What I could taste was often vile. After a few months I had begun to worry that I would never enjoy food again…it was incredibly depressing even though my doctors assured me that it would return. As the months went on, I would have bursts of taste but it would quickly fade leaving me frustrated and depressed. Long story short, it took about a year but my sense of taste finally returned to about 75%. Today, over 3 years later its almost back to normal and life is good! Reading about your experience during a very difficult time in my life made me feel like I was not alone and gave me hope. Thank you!

    where the first few bites would taste okay but it would fade leaving me very frustrated. I am now well over 3 years out and my sense of taste is probably 90% of what it once was but…i can enjoy food again!

  4. Mickel Graham says:

    Thanks to all for your comments, I am so glad to read your comments. I just finished 12-11-17 and keep wondering what will wake my taste up? I need to be ready to wait and it will come you say. Ok, I now understand this will take time. I am just ready to move off the tube but that sounds to speedy. I need to learn to be able to go with the flow until things improve. Thank you very much, (any tricks you want share-please do so).

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