A Post for Sick People

As a follow up to my earlier post for Friends of Sick People, here's a post for my advice for people who are sick.

As a patient with an icky medical diagnosis, you need to remember the most important person you need to take care of is you. I know you love your children, spouse/partner, and other people close to you but you need to focus on you for a bit. You will need more rest and care than usual. You will spend a lot more time at doctors and other appointments. Any time when you are not at work you will probably be focused on your (lack of ) health. Nap time!

You may find the need to set some rules and requests for other people. You are not being rude, you are letting other people know how they can best help you. You need to rest and take care of yourself, go to doctor appointments (and then recover from them).

Personally I decided I needed to limit social visits and phone calls. Newly diagnosed with cancer, and a cascade of additional medical issues, I decided I was not going to answer a thousand phone calls, texts, and emails asking the same (damn) questions and decided I would provide information for others in my blog. If anyone wanted to know how I was doing, they need to read my blog (unless you are my parents, they are allowed to ask me questions or my husband who went with me to all important appointments). If people wanted to come over, their visit had to be short.

People often want to be helpful but are unsure how they can help. If someone says anything about any kind of help, you can give them concrete ideas on what you need. A casserole for dinner? Help with laundry? Do you need someone to help get your children to school on some days or maybe even getting you to the doctor?

And its not just the physical issues but also your emotional self. At my second cancer diagnosis I decided I needed emotional support and joined a support group before my second surgery. I wasn't going to let cancer suck any more enjoyment out of my life.

If you feel you need more emotional support, start with your doctor or a social worker at your local hospital. They will have access to information on where you can find help. In addition, look for local support groups through your church or local support centers. And the stress? I'm not going there.

It is important to remember that the most important person, emotionally and physically,  is the one with the ailment.  Don't forget!

A Post For Friends of Sick People

Barbara over at Let Life Happen blogged about visiting breast cancer patients. I feel this is a greatly ignored topic and want to add my two cents on this for the benefit of all patients.

First of all, before you visit a sick person, put yourself in their shoes. When are you feeling awful, do you want to entertain someone for hours? Do you want to answer dozens of phone calls asking the same thing? Don't you want to sleep or watch bad TV or sip herbal tea in your bathrobe with fuzzy slippers on your feet? If you are in pain, what is your preferred activity - lying in bed with your tablet or sitting up in a chair talking to people? Please think first before you go visit someone who is ill or even call them.

Second of all, if someone is in the hospital these days, chances are they are not doing very well. I have never gotten a good night's sleep in the hospital (because my blood is best between 3-5 AM when they come to get it and wake me up). I am probably not feeling well and am usually cranky as a result. I am probably in my pajamas (or a lovely Dr. Seymour Butts hospital gown) and not looking my best. Chances are I am in pain as well.

Never just drop by because you 'were in the hospital'. A few years back, a friend 'dropped by' because she had some blood work done at 8 AM on the day after a major surgery. A very bad thing to do. I don't know what she was thinking. Visiting hours didn't even start until 11 AM. I was in a lot of pain and really didn't want to see anyone.

Having a party in someone's hospital room is a really bad idea. A friend had heart surgery in his early-30s. My then-boyfriend and a bunch of other friends were going to visit him at the hospital a day or two after surgery. I refused to go. Why? Because I had been a patient and had surgery and knew I would not want that many visitors for a few hours a couple of days after surgery.

I can't tell you how many times in the hospital, I have seen hospital rooms full of a dozen visitors for several hours and the patient is dozing in bed (probably wishing they would all just leave and let them rest). A hospital room is not a party room.

Once a patient is home, that doesn't mean the door is open for non-stop visitors. They probably want to rest and recover. They might have visiting nurses and PT/OT for a few weeks. If you want to visit, call first. If you don't get them, leave a message and wait for them to get back to you.

Honestly the best bet for visiting someone after surgery or who is ill enough to require hospitalization is to call before any medical misadventures and ask about visiting them afterwards. Do not assume anything. Some people may welcome visitors and some may not. You cannot know unless you ask. Also, you might want to offer to stop and get them some groceries or bring a casserole. Just ask first.

When I am in the hospital, I tell everyone the only ones to visit me in the hospital are my husband and my immediate family. Everyone else can wait until I tell them I am ready.

Finally, if you have been exposed to or are harboring any germs yourself, stay away until you are healthy.

After A Lot of Deep Thought

As a professional patient, I have met with a few million doctors over the years. I have recently done a lot of deep thought recently as well. I have decided I am glad I never even considered being a doctor.

Never mind the ick factor of having to touch people you don't know and look at all sorts of mystery ailments and figure out what is wrong with them. There also is the issue of medical school and internship - way more education than I would ever want. Besides I deserve all the sleep I can get.

On the plus side of being a doctor would be the ability to find a cure for all my ailments. That would be really nice. Actually it would be phenomenal!

But I digress. Another part of being a doctor is that everyone wants to tell you how to do your job. You would think you have enough education to make your own decisions but no. Medical school might train you on how many bones are in the human body, what the spleen actually does, or what your blood count numbers actually mean with having to look it up.

But according to the rest of the world, it doesn't give you a good bedside manner or how to manage a medical practice or deal with insurance companies. And every patient you see presents symptoms (and attitudes) differently. All their family members want to give you their opinions. Never mind the people that want to sue you if you make the least mistake.

So my ultimate conclusion is that, while I am sure I could be the first to come up with a cure for cancer if I was a doctor, I'll pass. I just want my next doctor to be the one to find a cure for all the horrible diseases of the world and cure me.

Perkiness and fatigue

Sometimes I wake up and am very perky. This annoys my husband to no end so that if I feel the least bit perky I make sure he knows (I love aggravating him sometimes - part of a happy marriage is being able to annoy your spouse).

Recently I have been dealing with fatigue. I have no idea why I have so much fatigue but I do. I have had three two hour plus naps in the past five days. This includes sleeping fairly well at night. If this keeps up maybe I should go to the doctor... No wait a minute, I have enough doctor appointments these days. If I make another doctor appointment it will be because I am dripping blood or in so much pain I am unable to move (but then how would I get there if I couldn't move?)

Yesterday I had some killer muscle cramps at the gym and was bent over in pain as a result. My hamstrings went into spasm and I could not move. Another woman at the gym noticed and came over to ask if I was okay. I wasn't but I stood still for a while and then tried stretching my hamstrings for a while before I left. When I got home, I went to bed before having lunch. Once I ate, I slept for nearly 2.5 hours.

The 'best' thing about fibromyalgia is that pain gets magnified. So when you get muscle cramps, the pain gets magnified.

But I digress. If I get enough sleep, I might be perky (and if I am, I make sure my husband knows). But I still might need a nap later in the day. If I don't get enough sleep, I probably won't be perky. The real problem is when I am in too much pain to eat, sleep or be perky. Then it really sucks.

New from ASCO - Widely Used Breast Cancer Chemotherapy Falls Short

I held my breath while watching this video. (If I could figure out how to embed it I would.)

There has been a lot of discussion over the years of the benefit of anthracyclines in breast cancer chemotherapy because of potential cardiac damage - in addition to all the other nasty side effects it may cause. Doxorubicin or (Adryamicin or Rubex) is known as the 'red devil' for its red color and it is so toxic that when administered by IV the nurses wear protective gear. (You feel so safe that they are wearing protective gear and it is going in your veins.) Its also the one that causes hair loss and all sorts of other fun.

Announced at ASCO, new research on the research on it has shown that by adding anthracyclines to the taxane/cytoxan combination has a significant positive impact on long term survival. I held my breath because I wasn't sure if it was going to show me that I had received what is now seen as the better combination.

I really hate this when this happens. Some had recommended removing anthracyclines from breast cancer chemotherapy protocols because of the damage because the potential cardiac side effects. Now it seems that was the wrong action to take.

Changes like this cause cancer patients to second guess their doctors. You can't go back and do the same chemo all over again with the anthracyclines added. It doesn't work that way. The doctors were following the best practice standards at the time. But then it leaves us patients in the lurch. Thank you very much!!! Triple grrrr......

So What Would You Do Differently?

We cannot afford to beat ourselves up for 'woulda, shoulda, coulda' moments. The past is the past. It is a different world than now. Everything that happened in the past is no one's fault, especially your own, But we can make changes based on what happened before so that it becomes better in the future. So if you don't think you handled your cancer (insert other nasty disease name here) diagnosis well, you can make sure you do it better if there is a next time.

I already had a 'do-over'. I screwed up my first cancer diagnosis and did it better the second time around. But I still would do some things differently if there is a next time.

My first cancer diagnosis I did everything wrong. I didn't seek additional emotional support. I didn't talk about it. I couldn't didn't research the crap out of it. (To be fair, it was 1981, there was no internet, and the few times I was near a medical book, I didn't really understand anything I read.) And I was miserable about my cancer for years.

At my second cancer diagnosis, I said I am in control. I joined a support group before my second surgery. I talked about it. I blog about it. I researched it. I put myself in control of my medical crap. I was not going to let cancer suck any more life out of me. I took some time to figure out how I was going to deal with it.

But have I learned anything that would help me with another cancer diagnosis? I think so.

I do need to say that since my second cancer diagnosis, I have had a couple of other not so good diagnoses. Nothing that will kill me but all will work to try to make me miserable for the rest of my life - degenerating disks, rheumatoid arthritis, and fibromyalgia. I think those count as 'life changing'.

How did I handle them? Pretty well. I researched them. I talk/blog about them. I did work on some emotional support. I didn't let them suck any enjoyment out of my life.

So if another cancer decided to try to suck some fun out of my life? I think I would do the following:

• research it
• talk/blog about it
• find emotional support as I feel I need it
• plan a vacation to go get grounded and develop a plan to take care of my sanity during treatment.

I think that last one is something I would do differently. I would take a few days/weeks to focus myself on a plan for coping. Then spend a few days at the beach to 'rest up' for treatment. Going to the beach is always very important. And I am always happy at the beach.