There is nothing that can adequately prepare you for the words “you have cancer.” The jagged line from the first possibility to the actual diagnosis is a long drawn out path of mounting dread. This is the first major hurdle and a difficult one as you will be hoping with all your heart that the tests come out negative.
Denial, fear, and anxiety are the key players that will become your new companions as you drift into the unknown reality of cancer. You may have felt it could never happen to you - ‘Not me, I’m too healthy… too young… too strong… too stable… too smart…’ No one is immune to the possibility. You cannot eat, exercise or think your way out of this disease.
Depending on your age, you may not even know anyone who has had cancer, other than a distant relative, or someone distant who you heard about.
I was only 37 years old when I was diagnosed. I was married with three young children under 10 years old. I could not believe there was any possibility I could have cancer. I even put off the biopsy because I was so sure of myself. After all, I ate well, exercised, didn’t drink or smoke, and had no family history. I felt physically good in every way...
When initially diagnosed, it is pleasantly surprising how many people will turn to you and offer their support. You are suddenly the most popular person ever, and all you had to do was get cancer, who knew?
People will come out of every corner, distant relatives you may not have spoken to for years, acquaintances you didn’t know cared so much, and others who never seem to even notice you before. Despite the horrible crisis you are experiencing, all the attention is really uplifting. Please note I am talking here mostly about those once removed folks – like out of town relatives, neighbors, co-workers, acquaintances. The support you may have of your family and close friends may not be what you expect. In some cases, it can be an extreme disappointment.
Depending on your role, its probably downright terrifying for your spouse/partner to think of life without you, not just on an emotional level, but even more so on a practical one. You each have your role in supporting the well-being of your family, even if it’s just the two of you. Imagine that position is suddenly threatened to be taken away and left unfulfilled? What will that mean for your partner?
When I was first diagnosed, my husband and I were in the midst of raising our young family. We had three kids ages 4, 6 and 7 years old. I was a stay-at-home mom. My husband was the sole financial supporter. He worked very hard so we would have a suitable life. Our roles were well defined and suited to each of us.
As the possibility of cancer moved toward a reality, the situation we were in was so wrenching with our young children, we could barely discuss our feelings to each other. Being a practical sort, I approached the situation from a medical angle, while everyone else saw it much more gravely. That would be the case of nearly everyone in my family with the exception of my mother-in-law and cousin who both previously experienced a bout with breast cancer. They immediately took the helm and eased me through what to expect while everyone else was walking on egg shells...
"How are you feeling?"
It's okay to ask once or twice but not every time you talk to me. It implies you expect me not to feel good, EVER. Hints at the idea that you see me as diminished and less than everyone else in ability, and that's really not fair.
"I'm sorry about your cancer," or "I'm sorry your cancer came back."
Maybe well meaning but really doesn't come out right.
"Let me know if there is anything I can do?"
Everyone says this, including me. It is a pretty useless thing to say. What I want most is a genuine show of concern (not worry), someone to listen to me, or treat me with respect. Be a friend by calling, visiting or just staying in touch.
Don't say anything. Pretend like nothing happened.
This is the worst of all choices. Then you are not validating this major crisis I am going through. It's best to greet me like you do everyone else - "How are doing?" Then maybe, "How's the treatment coming along," or "what did the doctor say?"
"You look great," or "You look really nice."
This is sort of tricky. I know that sometimes the person does actually look really nice, but she probably doesn't feel like she does. She may think you are patronizing her, or she looks good - for someone who is seriously ill! I don't personally have a problem with this one, but I have heard a lot of patients complain about it. I say avoid it.
"I feel so bad, I'm so sorry. What can I do?"
No one likes to be excessively pitied. Just be a friend and treat me like one.
"I can't handle this."
As a patient, I don't have a choice of being able to handle it or not. So as a spouse, sibling, daughter, son, friend, or co-worker, don't be a failure as a human being and disappear or withdraw.
"Have you heard of ____ for treating cancer? It really works!"
There is no known cure for cancer. The treatment is given and the hope is it will work, but it is understood it may not. There is nothing that guarantees a cure. The treatment requires major considerations on my part, please don't interfere with that difficult process.
"My doctor/center/clinic/drug is really the best. You should go there."
It is extremely important that I, as the patient, trust in my medical professional completely. A great doctor for you may not come across the same for me. There is a very personal dynamic that has to work between patient and doctor. Don't undermine my choice of care.
You just don't know what to say or do, it's too difficult a situation.
If your feeling overwhelmed or frustrated, take a break. Don't make the situation worse. Go out for a while, or get away until you feel calmer. Whatever your feeling, most likely I'm feeling it 10 times more. Give me space.
"You need to rest?"
This also implies you see me as diminished and incapable of leading a normal life. If I feel like I can do something, then I should. That's MY choice. I feel much better in an active state, its empowering.
"I don't like that doctor. We should find another."
WE shouldn't do anything. I'm the patient, I get to make that choice, so let me do it. If you really love me, let me decide what I want and don't interfere. Respect my need to do what's right for me.
I am a very adaptable person. I have adapted to a great many situations and circumstance, some being not so easy. That’s probably why I have had cancer for such a long time. I have learned to live with it and maybe even accept it. I have come to realize this is not good, I should be fending it away from me.
They tell me it's inside of me, lurking in its stealthy ways. Slowly moving about to other areas. Vaguely threatening to take over one day. I can’t see the cancer, it hides so well. It acts like everything's fine. It never leads on to what it has in store for me – no less than total annihilation.
I guess I was quite the coward for putting up with this kind of abuse. I don’t know why I didn’t resist such obvious trouble. Surely something was missing inside of me that made me not want to even raise a fist for myself. Somehow, I learned to accept what is given to me, be it good or bad.
Don’t be fooled cancer, I know who you are and what you are doing. I know your name too. You have misled me for such a long time. You are a demon in disguise. You can't hurt me anymore. The chemo will find you and you will be permanently expelled.
You may think you are winning, but you have already lost it all, you just haven’t noticed it yet. You can’t co-exist inside me anymore. I know what you are up to and I won’t let you kill me.
So go away cancer. I don’t want you with me. I demand that you leave me forever. There is no longer a place for you here.
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