Hospital visitors

When I am hospitalized, I have a list of people who can visit me. They include my husband, my parents, and my siblings. Anyone else has to call and ask. I am serious about this. If people visit unannounced, they will find out how rude I can really be.

My strong feelings about this are due to the fact that once, after a significant surgery, a friend had to stop at the hospital for an early morning appointment, the day after my surgery. So she decided to stop by my room at 830am. I was not ready for guests.

I was talking to someone who was a friend and a nurse who was giving me some information. I did not want to socialize. She didn't understand the concept of good manners and to think that the morning after major surgery might be a bad time to visit someone.

When I am in the hospital:

1. I probably feel like crap.
2. I probably look like crap.
3. I am probably cranky.

Its not that I don't want visitors at all - they do help the time go by - but my goal is to get better enough so I can leave as soon as possible. If I can't get my naps in, I won't be able to get better.  I find the concept of visiting people in the hospital for hours on end to be a bit ridiculous.

I actually feel sorry for the patient's whose families come to visit and stay for hours in big groups. If you are sick enough to be in the hospital, you don't want to host a party, you probably want to take a nap.

There is a hospital in Hawaii which has started the policy of visiting hours 24/7 and let the patients set their visiting times. This was done at patient request citing a study that found that people surrounded by family and friends heal faster and cope with their hospital stay better.

At first I was pretty appalled by this. But then I started to think.

There are lots of people who work odd shifts or have child care issues or travel distances or work nights and I can go on and on that have off hour schedules normally and are used to getting a lot of sleep during the day wherever they are so why should hospital visitation be any different?

Hospitals are where they wake you up for a sleeping pill or to take your blood and vital signs at 2am. So you might as well have a friend hang out with you for it.

The guilt factor

This is a less discussed issue relating to cancer diagnosis and treatment - the guilt factor. Sometimes its not even mentioned, while other times it is just brushed off as something you need to learn to live with.

Guilt is what got you to do what you were supposed to when you were a child. Guilt is what your morals use to keep you in line.

But then we feel cancer guilt which is different. Why didn't I get it and they did? Why did they have a recurrence and I didn't?

The more cancer friends I have gained, I have also lost some. I have the little list of in memorium blogs I used to follow, the group of friends on Facebook that are no longer here and are in memorium, there are the phone numbers in my phone that I know don't work any more. And when they do again, it will be a stranger's voice on the other end.

It seems now every month or two, or even more frequently, someone I know either has just learned about their stage IV diagnosis or I learn about their funeral arrangements.

Each time, there is a double dose of emotions the little tiny - "I'm glad it wasn't me" which is immediately followed by the huge "how could I even think that?" and then followed by cancer survivor guilt.

Sometimes the guilt lurks in the back ground and sometimes it emerges up front. It gives us down days but then we stuff it away and we learn to cope again. But its always there.

Friendships and Cancer or other Ailments

This is an ever popular topic in the cancer blogsphere - friends and cancer (or other ailments). More specifically the friends who either:

• run for the  hills
• become a doctor instantly and tell you what treatment you need
• think you will be dead in a month

But then there are the real friends who stick around when you are coping and help as they can.

AARP suggests saying a heartfelt 'I'm sorry' upon hearing someone is ill. I'm not so sure I would appreciate that as much as something more along the lines of 'well that really sucks'. But their other suggestions are good.

Then there is 'A Field Guide to the Wildlife of Cancer' which narrows down the categories to:

• Preachers
• Clueless
• Angels
• Bolters
• Fellow Travelers

I find there are too many preachers, clueless, and bolters out there. And far too many fellow travelers as well, but that's a different post.It doesn't matter if its cancer you are talking about, this applies to just about any serious life changing ailment.

Some times I get so tired of some people I stop telling them about my ailments or newest medical adventure because its just stressful to keep hearing the same crap from the preachers, clueless, and bolters (if you can find them).

We got the message

Some friends of mine are both having significant birthdays last month and next month so I wanted to have them over for brunch to celebrate. But some things are evidently just not meant to be.

The brunch was scheduled with much too-ing and fro-ing, balancing ten people's schedules and we finally settled on today at 11am. Then we had windows installed in three rooms of our house. Which took longer than expected. We planned to spend last weekend peeling wallpaper and painting.

But it snowed so we shoveled snow instead.

The entire contents of my husband's home office is in the dining room. We peeled wall paper every night this week. But since I have (a few) ailments I am not very useful in this endeavor.

By Wednesday night it was clear we would not be done by Sunday at 11. I asked if anyone could host instead of us. Only one person had ample parking for five cars since our world is full of giant snow banks and limited on street parking.

She go the flu on Friday. I changed it to a restaurant instead which had a parking lot and took reservations.

It snowed again and there is limited visibility and driving is horrible.

We decided it was not meant to be and we cancelled. We got the message. We will reschedule for a warmer/less snowy time of year.

Changing through cancer

[Note this is some what of a girly topic so go away if you might be offended.] Yesterday I got together with some old friends. Meaning people I have know for 25-30 years. They were talking about menopause issues -  hot flashes, weight gain, etc. They are all coping with the symptoms naturally. If only I was in the same boat as them.  I opted not to speak up as my medical history makes me very different. They were complaining about the past year or two.

It made me realize how my medical issues have changed me. I had a hysterectomy due to fibroids in 2005. It left me with one ovary. Chemotherapy made that ovary inactive so I had the luxury of going through chemopause which takes care of any remaining chance to go through menopause naturally. Then you add the wonderful cancer hormonal treatments that add hot flashes, weight gain, and all sorts of other fun things to the mix, chemically as opposed to naturally. And its been more than five years....

One friend pulled out a book on coping with menopause that had been recommended to her.  There was a chapter on the thyroid and what it controls and how it can change as you age. I can skip that chapter as I don't have one and haven't for decades. Most of the other chapters talked about how your body changes and how you can cope with the changes. Mine menopause was forced and dragging on and on.

As I was leaving one friend said 'I hope your back gets better'. That left me feeling that they really do not understand me. One, my back will not get better and I have been repeating this for years, and two, my back is not my primary generator of pain these days. I had brought up the fact that I have both RA and fibro earlier in the day but evidently it did not connect as being limitations that I cope with on a daily basis now.

Driving home I started thinking (which is particularly dangerous in the realm of multitasking to think and drive). These are my friends who I have known for decades. None of them read my blog, two of them are on Facebook and update about every few months, they infrequently email as well. These are my primary means of communication these days. So if they do not participate, we are not connecting very frequently at all.

We get together five times a year for our birthdays. We also get together in different sub groups at different times but I can go for weeks and months without communicating. A good part of it is me. It is more and more difficult for me to be able to get out and do things as much as I used to. This is not due to cancer but due to my back, RA, and fibro.

But how much did my cancers change me, particularly breast cancer due to its recency? I have significantly less tolerance for idiots, late people, and foolish wastes of time. My health is front and center in my life. Without cancer, would I be coping differently? I hope so.

The people who don't social media

To continue yesterday's post, I have noticed in the previous years I have some friends and family members who are on social media and some who aren't. And I feel a distance growing between with the ones who don't.

Basically if someone isn't on social media with me - twitter, FB, Linkedin, Pinterest, etc - they will probably not have any idea of what I am up to and what are my latest ailments.

The friends I see and actually go to lunch with or out for coffee with one on one have a good understanding of how I am doing because it is a chance to discuss things face to face. But still not as good as the social media thing.If I only get together with people as part of a group, they probably don't understand either because I am not going to take center stage to discuss my health when there are more interesting things to talk about.

While I like talking on the phone, the last thing I want to do is repeatedly run down the current status of all my ailments. I don't. If you ask a specific question - one of the most common ones I get is 'is your back any better yet?'. The answer to that question is 'no it is not and will not be better so shut up and stop asking'. I created a blog which is the center of all my social media to handle all the ailment questions.

So, if you aren't on social media with me, you are out of the loop. And if you aren't on social media, you probably aren't reading my blog and will never get this message. Sorry, I don't feel inclined to repeat my medical ailment status over and over again. And they are my ailments affecting my body so I am allowed to handle them the way I want to. My health is about me, my health is not about you. So if you want to know how I am doing, you might need to make an effort from time to time.

Yes those of you who  aren't on social media, you might need to make more of an effort to keep up with your friends who are. Social media is becoming interwoven into the way we communicate on many levels. The news broadcasts reference online material, events ask you to tweet about them, stores have a Facebook page and a Pinterest page for their wares. Special deals are available through social media. So if you aren't there, you don't know what is going on with me and many other things. In other words, you are being left behind.

Managing your diagnosis

I was talking with a friend last week. She was diagnosed with breast cancer about the same time I was and was scheduled for the same sort of treatment. But she was allergic to chemo and never completed more than her first dose but she did have radiation.

A month or so ago she was throwing up blood and all sorts of nasty other issues. After several trips to the ER and numerous medical (mis)adventures, it turns out she has an ulcer which was irritating her her yet undiscovered stomach cancer causing it to bleed. She then had a bone scan and found all kinds of shadows and was then going to have some more medical (mis)adventures to find out what spread where - how fun. Now she is in that wonderful land of 'holy crap-more-cancer-what-do-we-do-I-need-staging-and-a-treatment-protocol'.

Next week the rest of us who were in the same 'introduction to breast cancer support group' are getting together to find out what's going on before she leaves for her two week vacation in Bermuda (and we are all jealous about that part). When she returns from vacation she gets to start whatever chemo and other fun stuff that is lined up.

She is facing a not very fun diagnosis with a smile. But we were talking about what she wants to know from her doctors and when. She has told her doctors she doesn't want to be told anything unless her daughter is there. We also talked about how this is the time to take charge and tell the doctors what to tell her and what not to.She gets to be the one to tell her doctors what they can tell her and when.

We were educated by our first diagnoses and now we can tell our doctors how we are co-managing our treatment instead of the doctor getting to take the single lead. It is unfortunate that we get to this state but once we enter that oncology department the second time, we are going to be in charge.