First of all, I'm going to try to post every Saturday morning. This way everyone will know when to check the blog. Next, thank you for all the views on my video. The one thing I forgot and some of my friends have asked, How do you get on the bone marrow registry? Here's the answer: bethematch.org will give you all the answers for either getting on the registry or hosting a bone marrow drive. It would be incredible if those of you who work in a fairly large establishment, asked to run a drive at work. Employers love that sh.. (I gave up swearing for lent, so this will be a challenge)
I said in my last post that I would give some ideas about what to say and what not to say to people who are fighting or recovering from an illness. I'm not an expert, these are just some things that I have experienced over the years. Feel free to add additional thoughts under this blog or under my Facebook post. I'm sharing these things, because I don't think people realize how certain things can help or hinder an ill person. I know it's difficult to know unless you've been through it.
To Do:
1. Ask if the person has to follow a specific diet and when it's appropriate, bring freezer food. It's so hard to cook when you feel like crap, but eating is essential to recovery. I know there were many times I didn't eat because I had no energy to make something. Also, my family needed to eat something other than fast food. (they don't cook)
2. Help when asked or especially when not asked. Visit the patient (if allowed) and dust, vacuum, wash dishes, or put on soup. Sometimes it's hard to ask for help, that's why you should just do it.
3. Call or text or e-mail or message fairly often. You have no idea how that can brighten someones day. Cancer is lonely, yes I said that horrible word. People often say they don't want to bother you, but not feeling like you have a support system sucks.
4. Share your life. I would not like when people would say to me that they didn't want to bother me with their trivial stuff. Nothing is trivial and keeping in touch with regular life is essential to a patient.
I know, at least for myself, if I didn't feel well enough to talk, I would say so.
5. Offer rides to doctor appointments or just offer to bring the person for a ride. It's great to get out and be a part of the world. I wasn't allowed in public for a while, so these rides were incredible. (thanks Lee and Karen)
6. Pray for us if you are so inclined. One of my doctors may still be confused about why I had an angel statue, a Virgin Mary candle and a Buddha on my table in the hospital. I didn't want to blow his mind and tell him that my husband is Jewish.
Not To Do:
1. Don't say "your family or friends must really love you to deal with all this" We feel bad about putting everyone through all the stuff already.
2. Don't say "I like this wig better than the other one" Boy did that one make me feel uncomfortable and now I don't want to wear a certain cranial prosthetic. Actually, don't mention the wig at all in a public setting. If I want to, I can, but it's up to me. Just be nice and say, you look nice or don't say anything.
3. Don't assume that just because the person has a spouse that everything is being done. Our spouses and children have a lot on their plates during this time. They are still working and taking up most of the slack, but we need some assistance.
4. Don't assume that just because we look good, that we are good. Recovery can be long and hard. I can usually handle 2-3 hours, then it's nappy time.
5. Don't stay away.
6. Don't say dumb things! LOL! Actually that's a blanket statement for all occasions!!
I'll ramble to you next Saturday.
Peace out Peeps!
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