Experiencing first the diagnosis, angst, surgery, chemo and radio therapy, and then the loss of taste and
appetite, nausea, mouth-on-fire, weight loss, and the fear-filled days
anticipating the first scan, can feel like existing in the shadow of a dark cloud. Then one day the rays of sun break through
the dark cloud. The scan is clear, or at
least improved. And emerging from that
deer-caught-in-the-headlights state, the place of decision abdicated to medical experts, where every day was just about putting one foot in front
of the other, the world appears a bit distant and unfamiliar, but unchanged and
normal. The cancer survivor is however, no
longer the person they used to be. For them there is no return to normal as it was before Head and Neck Cancer. After surviving cancer, one's first challenge is to discover that there is no going back to normal, and then one has to learn what is one's new normal. This realization is however, helped along by the weakened state of one's post-treatment body, a bit of chemo brain, and by living in a society not versed in welcoming back cancer survivors.
Adapting to change is integral to surviving cancer. First is adapting from being healthy to having cancer, and feeling sick. Then adapting to the daily treatment regimen, being dependent on others for help and healing, and the side effects of treatment. The next change is to adapt to not being a patient anymore, and recognizing that one is now a cancer survivor. This is a difficult stage, where one has to integrate back into a familiar society, but with limited or altered abilities.
One can
always tell when someone is in those first months after treatment, because their
faces and attitude radiate a state of grace.
At that point, death is no longer the enemy, they have made peace with
what they did or did not do in life, and having been granted an extension of
their life is an almost unexpected surprise - when it comes.
The look on the faces of people in this stage of recovery is a mix
between saintliness and terrible fragility. They are normally so thin, often without hair,
skin pale and translucent, punctuated by fading (red) radiation burns. They tend to be quiet because they have become accustomed
to being in pain, and no longer need to mention it. The stage of grace doesn't last longer than a couple of months. Sometimes it is followed by death. Sometimes it is followed by recovery. This stage is an in-between waiting room or staging place between the realm of cancer and what follows it.
The fragile post treatment survivor has to somehow find their way from the stage of grace to ‘the new normal’, and get back to
living life with their responsibilities, friends and loved ones as best they can. This means unlearning to be dependent on others for most things, no longer referring to themselves as a patient, or someone having cancer, and gradually finding out about their changing physical and emotional abilities and limitations on the road to recovery. For example, difficulty with
swallowing, and pain from oral surgery and ulcers, tend to change one’s eating habits
and preferences. If the survivor presents with a
dry mouth, they may experience anxiety and panic at not
having a full water bottle in sight. If their
speech has been affected, they could find it very challenging to learn how to gesture, write, or otherwise supplement
their verbal communication. Dealing with the phone can be a challenge if the other party can’t make out what they
are saying, and a preference for e-mails and texting soon becomes normal. They may experience (often unintentional) cruel treatment at
the hands of strangers who cannot understand them. Uninformed people sometimes attribute speech problems to something
the cancer survivor did wrong (internal attribution) – like drinking too much alcohol,
or abusing drugs. Sometimes, uninformed
strangers treat them as if they have a mental or cognitive disability - speaking
down at them, talking slowly and using simple words. Dealing with frustrations like these soon become normal,
and the cancer survivor would be well advised to take this in their stride, and
otherwise not to react to ignorant remarks. If their treatment involved surgery rendering them without speech, learning
to communicate without speech, and carrying a slate or pad and pen when leaving
the house becomes normal. Reliance on one's spouse or partner to answer questions can become the easy way out, indicating the arrival of new responsibilities in the new normal for our loved ones.
Eventually the state of grace moves on, and things change again. Progressing on from mute acceptance towards gradual return to society, one has to start being a whole person again. Being counted again. This is the stage I call ‘taking back’ whatever
is possible. Sometimes this can feel a little disorienting and strange. This
is a time where the survivor ought to tell strangers to listen with more attention,
rather than accepting the blame for not speaking more clearly. This is the time when one should ask friends if
they would mind preparing something soft to eat, or to be mindful that cancer
has limited what the cancer survivor can eat. This is the time the cancer survivor can say when they would rather not explain yet again what happened to them.
Taking back at a physical level means that it is very important to continue with visits to the
physio therapist and speech therapist – for mobility, speech recovery, swallowing assistance, help with releasing scar tissue post surgery, and other specifics as the case may be. At the time I
was recovering from cancer treatment, less attention was paid to this aspect of rehabilitation, and I
regret not having had the benefit of swallowing therapy at this crucial time. Today, a TENS machine is used to electronically
stimulate the muscles in the throat, and therapists teach the survivor how to
swallow. A little training goes a long
way. They teach for example, to ignore the
natural instinct to throw one’s head back to help with moving the food down the
throat. It is easier to swallow dropping
one’s chin down to one’s chest. Also toast is
easier to eat than bread – the coarseness of the dry crust grips better on the inside
of the throat to move down than bread, which forms a dense ball and then gets
stuck. These therapists represent a wealth of useful information. If therapy doesn't quite get you there, be willing to do workarounds, as I still do, and eat before going out to dinner, so I won’t have to splutter and choke my way through a meal in front of company.
Work-arounds extend into practical everyday change and adjustment. Speech-wise,
one generally does better at early morning conversations, when one is rested, than late
in the day appointments. I find that my speech and head and neck muscles get tired from about noon onwards, and then I don't pay sufficient attention to
articulating well. If I have to meet
with strangers or clients, I schedule it for earlier in the day.
Taking back
responsibility like shopping, fetching and carrying the kids, entertaining, chores
around the house, dealing with finances – these should be gradually resumed too. But don't forget about chemo
brain – a state of being less than fully alert, easily distracted, being forgetful at
times. Chemo brain is a bit like
pregnant brain. There are things going
on in your body – relating to healing and recovery, which take away resources
from certain mental activities. This is not a
bad thing, and it seems to pass within the first six months, but this is not
the best time to make life altering decisions. I remember asking my husband to
check my calculations, and proof-read my customer communications at this time. He spotted quite a few serious errors which we
were able to fix before it was too late. It is good to start with small tasks
and gradually work up to where one left off before treatment. It is normal to feel a little frazzled after treatment,
but the feeling does go away.
On this road back to recovery, regardless of which stage you find yourself at, take time
to smell the roses. Spending time in my garden,
taking week-end breaks away with family and friends, meditating, reading, and later on immersing myself in writing and photography, helped me to regain equilibrium after
treatment. It took time for my body to heal and feel strong again, and I learned that being patient was better for me than wondering when things would get back to normal. Feeding the soul is as important as nurturing that thin body back to health. Being in nature worked well for me, but even here I had to make a few changes. My new outdoor normal apparel included an array of scarves and hats – both for protection against the
wind and sun, and to help disguise my scars before I learned to be proud of them. When I was recovering after therapy the odd dizzy spell had me fearful of falling over, and I never felt the need for wearing high heels again. Flat shoes are safe. I recognized that I need to do things that make me feel safe.
I go to bed early. After treatment I suffered many months of fatigue
while my body was recovering from particularly radio therapy. Some days worse, some days better. I took afternoon
naps then, it was good for
me to sleep. I still have naps almost a decade and a half later, although fatigue nowadays is mostly from talking and eating. Sleep helps to re-build the body.
In the new
normal I am kinder to myself, try to have less physical and emotional expectations of myself. I still overstep
my limits sometimes, but it is simpler not to push too hard. When I push myself too hard, I usually end up getting
overly tired, stressed, irritable, and my immune system takes the brunt of
this, which makes me susceptible to viral infections and injury. It is no real
kindness actually, it is just being practical. Nobody
likes to be sick if something can be done to prevent it. In relationships and interaction with others too, I find that keeping things on an even keel serves me better than extremes in emotion. Stress does not serve me most of the time, so I tend to avoid it.
In my experience, new normal
comes to the cancer survivor over time - if the cancer survivor is open to this new experience. I did not always think this way, and spent years trying to return to my previous normal. As you can imagine, I ended up disappointed, angry, resentful and very unhappy. Therefore, I encourage cancer survivors and their helpers to be aware, to be patient, to be kind. Don’t expect things to go back to what they were before. Cancer changes us all - survivors and those around them too.
It is good to reflect back on your journey thus far, to recognize the resilient person you have become, recognize what great stuff you are made of to have overcome all this. You are a new and different person to who you were before. You have been tempered like precious metal, and joined a very select group of individuals. Most people have not survived what you have. You are extraordinarily brave and strong. Take time to value yourself. You are not ordinary.
Next time I’ll
catch you up on what happened when I got osteo radio necrosis of my jaw. Until we talk again, be well.
