Paul's Heart

Just Because You Cannot See It

There are plenty of side effects that come about from treatments for cancer, whether it be from surgery, radiation therapy, or chemotherapy.  Some are quite obvious and visible, others cannot be seen.  Then of course, for the cancer patient, it becomes a matter of whether it is worth anyone’s attention.

I had and still swear by a couple of rules when it comes to dealing with side effects.  If it is anything different than what the norm was, you make the call to the oncologist.  The oncologist will be able to tell, and would make any decision that would require immediate action.

Like I said, there are obvious side effects that can be seen –  hair loss, weight loss, lethargy, skin color.  But perhaps the most concerning for patients, is just so complicated, because it cannot be seen.  To complicate matters, perception, how a cancer patient worries about this side effect, can actually cause more duress trying to deny it causing cancer patients to deny it.  This is not a good thing.  Your doctor is going to know best whether what you are feeling is normal, expected, or needs to be looked into further.  You could be having a reaction to the treatment, or perhaps it could be psychosomatic in nature.  The key is to never underestimate how you are feeling.  If it is an emergency, trust me, your doctor will make an immediate decision and direct you what you need to do.

Fatigue is simply put, exhaustion.  Not just “phew – I put in 8 hours today, went to the gym, did some grocery shopping, and barely had enough energy to cook dinner.”  No fatigue is much worse than that.  Because treatments deplete the body of the many blood cells it needs to survive, cancer patients are often left with barely enough energy to get from a chair in their living room, grab a little snack in the kitchen, and sit back down without being completely exhausted.

I have often told cancer patients who have asked me about fatigue, I put it simply, “if you feel like putting a new roof on the house, go for it.  But if you cannot even get up to change the channel on the television (like we used to do as far back as the early 1980’s), then don’t”.  It sounded like a silly suggestion, but from the first time, that a patient tries to push their energy level, they remember the little voice I put in their head warning them if they did not listen to their body.

But you see, dealing with fatigue is complicated.  If you are like me, or my late father, we were never the type to sit around, or ask for help with anything.  If something needed to be done, we did what we had to, and then we paid for it dearly.  But being forced into a nap is the least of the worries in dealing with fatigue.  We are not only wearing ourselves out mentally, and physically, but we are challenging our bodies to keep up when it so desperately needs rest.

Radiation therapy is harmful to the body.  Great in curing cancer, but harmful.   Most chemotherapy is toxic to the body.  Great in curing cancer, but toxic.  Both treatments erode our body’s immune system, which, if we push ourselves physically more than we should, it only wears our immune system down even quicker.

So we have to deal with fatigue ourselves.  But I talked about perception, from a patient’s perspective.  But because fatigue can only be felt and not seen, we as cancer patients often burden ourselves with how we are seen by those around us.  The most common perception we feel being directed at us is that we are lazy.  Unless you are actually dealing with a situation as severe as cancer, a person is most likely never going to know what true fatigue feels like, and we have to be willing to admit, there is probably going to be some sort of judgment.  We have to be willing to accept that we, WE, have to only concerns with how we treat ourselves when going through times like these.  Sounds easy I know.  I have been on the harassment side of co-workers who felt fatigue was bullshit.

By the second week of my radiation treatments, I was going to bed at least two hours earlier than usual, and by the end of the treatments, I was usually in bed by 7pm.  During my chemotherapy, it was not unusual for me to sleep fifteen to seventeen hours after my injections, followed by early bed times.  Of course the body does rebound, if you give it the chance, and then do not push it.

The fact is, fatigue is real.  Just because others cannot see it, you can feel it.

Listen to your body.  It will tell you what you can do, and cannot.

Lymphoma – Support And Information

There is not doubt, that the diagnosis of any cancer, will often leave the patient with a feeling of isolation.  After all, a diagnosis polarizes all attention to one person, the person diagnosed.  Nothing and no one else matters.  But that does not mean that others will not be affected by the diagnosis.  Before I get to that…

There is a world of information about lymphoma available today that was not when I was diagnosed.  All I was able to do, was to try and research, via news records at libraries for success stories on Hodgkin’s Lymphoma.  Needless to say, that took up a lot of time, and really only produced on story, which was about Carl Nelson, a football player for the New York Giants.  He had survived Hodgkin’s Disease.

But the majority of support came in the way of two counselors that I had come across.  John was a giant redwood of a man towering over me by at least two feet, but with a very soft heart.  He bore the initial brunt of my venting as I went through the various stages of Kubler-Ross, (anger, denial, bargaining, depression, acceptance).  Later I would meet Ilona who would be with me through my chemotherapy days.  Sadly, she died a few years ago with her own battle of cancer, such cruel irony.  But I did not just have counselors, my oncology nurse is the only reason I was able to get through my treatments at all.  Her comfort to me, was not as a nurse to a patient, but almost as a son as I am pretty sure I was young enough to be her son.

Family can play a big role in support as well, but it can get very complicated.  Depending on the family member, you can find acceptance and true support, or possibly denial, avoidance, and even shame.  You have to remember, that for many older family members, they are only likely to know one thing about cancer, “everybody dies from it” or they can “catch cancer.”  I have already addressed that in prior posts.  For younger family members like young children, it is critical to be sensitive to what they hear about cancer.  They can be very quick to believe that a person will die if they hear that even just one other person had died.  Siblings and parents are profoundly affected by the diagnosis of cancer and I feel are probably the best source of support.

The most important support from a family member is going to be that of a significant other.  That person is going to be with you most likely every step of the way.  But just as a cancer patient can feel alone and isolated, so can the significant other who is thrown into the position of caregiver.  Not only does the patient surrender their life and whatever they were doing, but now, so is the significant other who otherwise has done nothing to deserve having to sacrifice their life and activities.  This can lead to resentment, and often does.  Which is why it is so important to keep the lines of communication open, and your minds.  Cancer is a difficult thing to deal with alone.

As I mentioned, I was limited with the support I could find.  Today, there is literally a whole world out there of information and support.  I have links listed on this page to organizations, support groups, and other information about dealing with Lymphoma.  But just as I offer in my disclaimer, I must remind you, it is important that realize who is your doctor, who knows your actual situation.  Those are the ones that you ultimately need to listen to, and if you have questions, ask.  The links that I provide are very good with that kind of support, making sure that you realize we are not doctors, will never give out medical advice, just personal experience and information.

I am glad that you have found “Paul’s Heart.”  It is a start to finding support and information that I know would have been beneficial to me had I had it back then.