Imagine a Life Where You Can’t Eat or Drink

Imagine a life where you can't eat or drink. But not just that. That is what everyone sees and remembers. “Ok, so he can’t go to restaurants anymore, but thank god he is here.” But now imagine this. . .

Warren Levison, Herfordshire, UK Oropharyngeal Cancer Survivor

Imagine not being able to socialize properly. . . Because everything at some point after a couple of hours involves at the very least having a drink - a coffee, a glass of water. And you can’t partake. You just patiently sit and watch. And sit. You sit and make polite conversation to pass the time. But it is hard to be understood because the life saving surgery you had a year ago has left you with a permanent speech impediment. One-on-one is easier, somewhere quieter with no background noise. And it’s less awkward with your nearest and dearest, which is why you choose not to see most people. Because being in a crowd where your voice can’t project as easily, and where there’s clutter or music in the background, it's just too much of an effort to speak and make yourself understood and heard. And it’s exhausting having to repeat yourself and concentrate on pronouncing your words, so it’s easier to remain quiet, or to just not attend in the first place.

And then there is the excess saliva. Is there a bathroom nearby so that you can go and spit frequently? At home it’s easier, your family are used to you spitting into cups and hankies, and physically wiping your mouth out, and coughing and spluttering, but in company it needs to be more controlled. It is humiliating, plus uncomfortable, to feel your mouth constantly filling up with saliva.

Now imagine, in addition to that, having to call your bank, a client, or a friend. Everyday situations. Giving a password and struggling to make yourself understood, and repeating for the 3rd time a word or your name before apologizing, at which point they ask you if they should put on your records that you have a speech impediment. Another reminder. And then having to excuse yourself for a moment to go off and spit in order for your voice to become clearer so that you can continue your conversation.

Now, imagine going for a simple walk. The stress of finding somewhere to fuel your body via the feeding tube that has been sticking out of your stomach for the best part of a year. You know, that area that is constantly inflamed and irritated and red and uncomfortable because your body is frantically trying to reject this alien object. But it has to remain there permanently in order for you to survive. And now you have to work out the timings: what time is your next feed due? If you go for a walk at midday you will need to find somewhere to sit and be able to feed yourself through the tube. You must remember to take syringes and drinks with you in your backpack at all times. Because if it’s a reasonably warm day you will need additional water inserted into the feeding tube to properly hydrate yourself because you cannot drink a glass of water, even when when your mouth is dry from thirst. What if you get a headache? You can’t just take pills. You’ll have to get some liquid formula and flush the tube through before feeding through the meds. Another half an hour of your day gone in addition to everything else.

And now imagine the part where you have to try to keep the swallow function going. You are not sure why, because you've been told that it will never be safe enough for you to consume food in order to get rid of the feeding tube, which was once your dream and sole focus, and reason to fight.

But now you’re left with the knowledge that this is highly unlikely. Impossible in fact, but you don’t want to let your mind go there, so you stick with “highly unlikely.”

And so you mash up a teaspoon full of something barely edible, and you sit with your cups ready to spit out what you can’t manage to swallow, and you force it down whilst doing a specific procedure you have been taught and perfected over months and months of grueling rehab exercises. And you cough and you splutter. You couldn’t possibly do this in public. But you push yourself and push yourself. And your family clutter about you doing normal life, perhaps having a cup of tea, or watching TV, perhaps leaving the room sometimes so they don’t have to listen, but just getting on with their day. Because after all, it’s become relatively normal in this household. No one draws reference to it. But inside they might be tense and distraught and sad and desperate. But you don’t like pity. You’re strong and heroic and quite unbelievable. Sometimes you cry. Sometimes you’re frustrated. But my goodness you’re strong and stoic. And so they are too. And then that ‘meal’ is over after a couple of teaspoons and half an hour of focus and determination, and you collapse on the sofa (if you’re not trying to work and juggle your declining business) and your eyes close and there is a brief moment of respite while those around you let you rest and sleep and move along quietly with life around you. And they are happy to see you at peace.

And then there is the gym. It’s amazing everyone says. He’s at the gym. He plays tennis. And it is. And you do. And in the back of your mind you are also thinking about your future - and how the medical team have told you that that your lungs are at great risk over time of being damaged due to the dangerously high level of aspiration (saliva entering your lungs due to your lack of adequate swallow function). And so it is imperative that you keep exercising and keep yourself as fit as possible for as long as possible. So that your life doesn’t become future compromised.

And now imagine the nights, the restlessness, the never ending dryness in your mouth and the feeling of waking up with overwhelming dryness like a hangover, having not even had the pleasure of a drink the night before. And then not being able to get back to sleep. But you know you need to rest because you have a day of scans and appointments and things being shoved down your throat tomorrow at the hospital. Again.

And so imagine, for one moment, this life.

And forgive me when you so very kindly ask me, his wife, “how is he?”, and I say “I don’t know how to answer this question anymore.” Because I don’t. But he is here. And he is just awesome. And my wonderful friends and family are here with us every step of the way.

By Stacie Levison, Herfordshire, UK
Caregiver to husband Warren, a survivor of recurrent oropharyngeal SCC.

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Survivor of HPV-attributed Tongue and Neck Cancer

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