They Say You’re Looking Good – But You Sure Don’t Feel Very Good!

Below is an image that I have borrowed from the Breast Cancer Awareness Page on Facebook:

Hidden disease

I think a lot of cancer patients will share my near disdain when I see one of my friends and they say something like this:  “You sure do look good.” or “You sure are looking good today.”  Sometimes, I might agree with them.  Especially if it’s a good day and I have made an effort to dress up a little or if I really do think I look good.  But most days, it’s just their way of trying to say something positive.  You know you don’t look good and you sure know that you don’t feel good.  Maybe your pain and suffering is not clearly visible on the outside, but it’s there on the inside and sometimes these comments just make you feel uncomfortable.  Don’t they know how sick you really are?

At the same time, there are periods during your illness where you probably are looking better or when you don’t look or feel very sick.  Certainly, these are not the times you are taking chemo or some other body busting treatment.  But they are part of the illness.

It could be at one of these times that you get a dirty look from some stranger when you get out of your car that you or your caregiver parked in a handicapped space.  They just can’t feel your overwhelming fatigue or how it takes everything you’ve got just to move one foot in front of the other even when things are going at their best.

You also learn to hide symptoms.  I know I do.  Especially those nagging neurological signs.  I have found that if I keep my hands and arms close to my body, the trembling and tremors are much less noticeable to others.  Of course, when you eat, it all becomes too obvious.  Especially when you leave a restaurant wearing your meal.  I have done this many times – in fact, almost always I get up from a meal and wonder how I spilled so much food and drink on myself.

One of my most troubling symptoms is a loss of balance.  This feeling of being “lost in space” makes me walk like I’m drunk.  Sometimes, I think people who see me stumble as I try to get my things together assume that I truly am drunk.  I don’t drive anymore but I can just imagine trying to convince a police officer who might want to administer a field sobriety test that I’m sick and not drunk.

Last month one of my doctors asked me “What problem bothers me the most?”.  He got a quick response.  Incontinence! – another neurological consequence of my disease.  The urinary incontinence is worse than my bowel incontinence because it’s there almost all the time.  The problem with my bowels is only when I suffer from diarrhea.  Thank goodness for constipation!

I never really know when I can hold the urine or when, despite any effort I might make, it all comes pouring out.  It’s a big reason that I prefer to stay at home as much as possible without preventing me from doing what I need and want to do.  Being next to a bathroom becomes very important.  I have gotten used to wearing Depends – the men’s underwear is actually comfortable and not noticeable and it works really well!  They also make needed trips out less worrisome and reduce the anxiety.  And, it’s another reason that strangers and even acquaintances don’t understand your illness – you can hide it from them!

But don’t think that I don’t try to keep going out and having fun.  I love going out to eat at good restaurants and there’s nothing better than watching a good movie in a real theater and not on your TV set.  So, I tell others to keep doing everything that you are able to do.  You never know when things might progress to the point when you won’t be able to enjoy things as much as you can today.

My illness (paraneoplastic syndrome initiated by Stage IV melanoma) is progressive and irreversible.  I can tell that things keep getting a little worse each day, each week, each month.  Thank goodness that the pace of its progression has slowed down.  I hope it’s a result of the treatment plan.  I have been taking Cytoxan for two years now to slow down my immune system and hopefully slow down its attack on my nerves and muscles.  It still makes me feel sick sometimes but I have learned to live with it.

With my disease, it was at first the pain.  Now its the growing weakness.  But I have not and will not let this disease overcome my efforts to subdue it.  I have not and will not give up.  No matter how bad I feel, I get up every morning and with a little help clean up, get dressed and eat a healthy breakfast.  I keep my mind busy and try to do the exercises that I was given by my physical therapist.  I can still get around with some assistance.  I will keep on trying to do as much as my body will allow.

Remember, you never know when things will get worse.  Don’t skip something today because you feel too sick because tomorrow you may regret not trying.  I plan to fight my illness and live a long life.  Hopefully, I will get as much joy out of the rest of my life as I possibly can.  I have so many reasons to do so.

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About mcreyscope

Retired / disabled survivor of Stage IV melanoma and paraneoplastic syndrome.
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