“We don’t know how long a treatment will be effective, or if a new option is on the horizon when the current one fails.”
I am a cancer patient person, “CPP” for short — there are those of us whose journey is distinct from the majority of cancer patients. I have a myeloproliferative neoplasm (MPN), a rare blood cancer that was recently receiving some attention-yielding additional drug therapies. There is no cure for me, just treatment options. I am also a lymphoma patient. These make me a CPP.
Any cancer diagnosis produces an onslaught of emotions. One primary reaction is “I want more time,” and that can certainly be an excellent motivator to undergo debilitating treatments in hopes of a promising outcome. Patients with cancer anticipate a day when things will return to “normal,” when they will ring the bell, moving on to a new chapter where each new day is appreciated and embraced, missed opportunities are seized with a passion previously unknown. Cancer survivors are thankful that the worst is over and there is still life left to live, though it may be different than before. There is hope because they’ve been given time — a new lease on life.
But what about those of us with no final treatment, those who will not ring the bell?
Those of us with incurable cancer will undergo similar treatments, with same or similar side effects. But this is only to slow the progression or diminish the effects the disease has on our bodies. The harsh side effects do not carry with them the hope of remission and no final treatment to be celebrated. We don’t know how long a treatment will be effective, or if a new option is on the horizon when the current one fails. Like my fellow CPPs, I follow my ever-changing test results, knowing “new normal” is a moving target not lasting as long as we hope. We won’t refer to life “before or after” cancer.
For every crisis, life seems to be split into the “before” and “after” categories. Prior to my diagnosis, I led an active lifestyle, traveled, worked and volunteered. I have struggled to make peace with the fatigue that plagues everything and the long list of unpredictable side effects from treatment. The choice to keep getting out there and living, making the necessary adaptations, is an emotional and psychological battle. Some days that battle is won and some days not.
Because my side effects are not always visible, there is an expectation of normalcy that just isn’t there. My oncologist once told a family member, “Her body is fighting a battle 24/7.” Awake or sleeping, the battle is on. We CPP’s know it’s a long haul and our bodies are the warriors without respite from the fight. Strength for the battle is found in the hope for living.
Cancer battles are not fought alone. We depend on the support of our family and friends in ways that take a toll on them both physically and emotionally, too. They are affected by the ups and downs, the change of plans and the general fallout from this unchosen journey. They are fatigued with the constant chronic illness issues, side effects, inability to enjoy things once enjoyed and the inability to relieve or fix it.
CPPs often feel guilty for dragging them into it, the responsibility of burdening them, changing their lives with our disease. We know and fear sometimes that they can step away or distance themselves when they get weary of our battle, we wonder if they’ll draw into it with us, or is it too much? How do we fight without them? How can we be less “sick” when that’s impossible? Cancer battles are relentless emotionally and physically for everyone involved.
CPPs do have needs, yet the need is as unpredictable as our side effects. For the people who want to help, here are some of my personal suggestions. I don’t need meal trains or people with me during treatment. What I need is the freedom to take a rain check on dinner sometimes, to be invited or included like usual, but a ride would be great. I need the understanding that I really can enjoy being a spectator — it’s the being there that’s important. I’ve asked family and friends not to shy away from or exclude me from fun and fellowship. I can prepare, adapt, adjust, if I can’t I’ll say. I want the time with loved ones, friends and precious grandchildren. I know the fatigue will require rest. These are the things of living, and I choose it at every possibility!
If you have a CPP in your life, your presence in the battle gives strength for enjoying life with you, and we are thankful for it. If you are a CPP, fight on fellow warrior—every day is a win, every win is a gift of time.
This post was written and submitted by Betsy Stinson. The article reflects the views of Stinson and not of CURE®. This is also not supposed to be intended as medical advice.
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