Wednesday, August 25, 2010

School and how to help a cancer patient

All children have officially returned to school today and as I type this, I am sitting in perfect and peace and tranquility! Emily started the first grade! She has been excited for WEEKS and was completely and totally consumed by getting ready. We went clothes shopping last week and school supply shopping as well. She rummaged through bags of supplies asking what was hers and also trying to take things from the high schoolers as if she needed a composition book and college ruled paper. But, she and I spent Monday night packing her backpack, making her lunch and choosing her outfit for the first day. In the morning, she was too excited to eat and absolutely unfocused as to what she should do first. Even though school didn't start until 8:30, she insisted that we leave 40 minutes before the bell and so we stood in the parking lot listening to the crickets until the bell rang and she was ushered off to class. Today was not quite so smooth as she has been throwing major temper tantrums and has been absolutely impossible to deal with. Though she is excited about school, she isn't used to her routine. Yes, I understand that transitions are hard for her but this morning, I was ready to drive her to her dads and say HERE! It took her 30 minutes to decide what to wear. I tried to have her do this last night but she was absolutely not going to budge on the issue as she wanted to wear a specific pair of jeans and we couldn't find them. So it was a bloody battle this morning. She refused to brush her hair, brush her teeth, pack her lunch in her backpack, put on shoes and when we did put on the shoes, she didn't like the way I tied them and pulled off her socks and shoes and threw them or eat her breakfast. It was not fun. Emily has ODD, oppositional defiant disorder. This along with her ADHD, means I deal with periods of temper tantrums that would try the patience of God, defiance to the Nth degree as she absolutely REFUSES to do anything and as she cannot calm herself down, she throws things, punches, kicks, and slaps. I will admit I have lost patience with her and the past 24 hours has been extremely difficult for all of us. It will die down as she gets used to the routine and I have failed time and time again at restoring order and control when she is out of control. It's hard NOT to react and extremely difficult to be proactive. We try but we are human.
Physiology started up on Monday night. I HATE the section I'm in. MW lecture, Tuesday lab. YUCK! I would prefer to have the lab before or after the lecture period on MW but nobody wanted this section and when the teacher asked who would like to switch, only those with Tuesday lab stood up there. Hence the reason it was the only section open when I registered. But, at least I got the class and my instructor stated if there were conflicts, she would allow us to switch a section for the week. My Oncology appointments on Tuesdays are the only conflict at this time as I still am unemployed.

A few days ago, I had a conversation with a relative. As a cancer patient, I hate conversations like this one. If you are a cancer patient or relative of a cancer patient, avoid this please.
Relative - "So you think you might have surgery in December?"
Me- "Yes, that is the plan provided that there is nothing new on this next scan."
Relative - "What are you going to do about the kids?"
Me- "I haven't figured that out yet."
Relative - "Are you still looking for a job?"
Me- "Yes, haven't found anything though"
Relative- "What are you going to tell an employer about the surgery? Is it because of that that you can't find one?"
Me- "I don't know. I usually don't mention my medical issues in an interview and I have no idea what is going to happen or even IF there is going to be surgery."
Relative - "Well what are you going to do about Unemployment? What if you have surgery and you can't collect any? How are you going to pay your bills?"
Me- "I don't know."
Relative - "Well what are you going to do about the house then?"
Me- "I don't know."
Relative - "Well don't you think you better figure that out."
Me - "Well obviously, I'm going to lose the house to a foreclosure an we're all going to live in my van." (Yes, I did say this)

By this time, I wanted to hang myself. I was increasingly frustrated because though this is a person that is local, I was never asked what she could do, what SMALL thing that could be done to help me out. After I collected myself, I said, "I don't know what is going to happen. I can't plan for something that may or may not happen in 3 months without the scan, without a surgical date, without a battle plan. But you CAN help me by telling people about my book and DVD store. That would help." She said she'd pass the info onto her family and friends.
I went to bed feeling very uneasy. So many loose ends to tie and I know she's well meaning but "What are you going to do?" is not a helpful question. If there is someone in your neighborhood going through something like this, here is how you can help.
-- Bring a meal. Cancer patients and anyone going through chronic illness get tired. Dr. appointments take time, LOTS of time. I know even though I feel healthy, each Oncology appointment takes a minimum of 6 hours before I'm done with the labs, the waiting and the traffic. Medications cause nausea and fatigue. Being around food when nauseous is very difficult. Meals help a lot.
-- As one of my relatives dishes on the condition of my house a lot, see above. Even offering to weed a garden is a HUGE help as is helping with any household chore.
-- If there are children involved, offer to take them somewhere with your kids. Speaking for my kids only, there are a lot of unresolved issues. I have 2 very scared children who prefer to deny the existence of the disease because it's too hard for them to look at. Kids with a parent who is ill live with constant fear that that parent will die. The feel helpless, powerless, fearful and apprehensive for the future. As a single mom, who is going to be there for the kids is the NUMBER 1 concern. I go to appointments and things by myself. IF this surgery takes place, I need to know they are safe and cared for while I can't do it. Any patient, irregardless if they have a husband or other family member will tell you that the kids are their main priority. If there is someone in your neighborhood with these issues, that is the number one thing that can be done to help them.
-- Don't avoid talking about the disease. We want to talk about it. It's OK if you don't understand 100% what we are going through. An ear is good enough and we don't expect you to understand.
-- Don't give us YOUR fear or back off because of you. Cancer is not contagious. Most don't like to hear unpleasant news. It brings a person closer to facing their own mortality and we face that daily and we figure out how to live with that. Your fears on top of our own is a big load to carry.
-- Never ever ever imply, hint, or outright say that the person with the illness is a burden. It is difficult enough to have to ask for help. We don't need to be reminded what a big encroachment it is on your life. We didn't ask to be sick. It's not our fault. Cancer is not a disease that affects just ONE person, it affects everyone that knows that person, cares about that person or is related to that person. That is the sad, sad, reality. We are bombarded by societal messages daily that if you are sick, you are weak, you are useless, you are an expense on society. We don't need to hear it from you. This can happen to ANYONE. The value of life, any life, irregardless of disease, cannot be measured or thought of on monetary terms. No one is a burden because they are sick.

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1 comment:

Sue G said...

I've been in this game for almost seven years now. My two best friends for over 30 years live just one to two houses away. In all this time, they have never cooked a meal, asked if I needed anything at the store. Nada. They do, however, as all the time, "When will you be done with this already?"

Wow, why didn't I think of that? I mean, why do I choose to keep playing with cancer when I could be done with it?

Ya' gotta love people where they're at...even when they're at the intersection of Selfish and Ignorant.

I think you should write a book of do's and don't's for cancer patients and their friends and families.