The Hospital Space for Relaxation

As you go through cancer treatment you need a place to sit quietly with friends and family. Every hospital has a space where families of patients can come together and relax with the hospital patient. There are little areas tucked away. Every hospital has one.

At the hospital I go to there is a little quiet space tucked away down by the chemotherapy infusion rooms which is comfortable and has a small lending library for patients and their family members.

At Children's Hospital in Boston, they have the Prouty Gardens. It has been there for sixty years and was donated for that specific purpose. Mrs. Prouty was told by the then hospital president, that it would stay until 'all children were well'. She then hired professionals to design and create the garden using her own money. On a plaque in the garden it says: “Because of Mrs. Prouty’s vision, this garden will exist as long as Children’s Hospital has patients, families, and staff to enjoy it’’. The value of this garden to patients and their families can not be measured.

Many families have spent time there with their children in their last days. They have even spread the ashes of their children there and have gone back to remember then there. Its a cemetery in some respects, even if its use as one was not intentional. Its a place of remembrance.

Now Children's Hospital is going to dig up Prouty Garden for the purpose of expansion. The claim is they need the space for more private rooms, a neonatal intensive care unit, and a heart center. Big business interests have taken over the wishes and desires of patients, former patients, deceased patients, and their family members.

On one level I can understand the need for the hospital to expand and add more space to treat more patients. All businesses run into the need to expand. They find more space where they could then expand. Children's Hospital has multiple campuses where they could expand elsewhere.

The idea of taking a space which has been used for contemplation and remembrance for so many for so long to build a huge building is very unjust. This whole idea just upsets me. The hospital went back on their word that has stood for decades. The only hope is that a judge will step in and rule to protect the garden.

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.

More on change

As part of moving, we are looking at a variety of locations. The biggest requirement is that my husband's commute stays reasonable. Well the first requirement is that we buy a more affordable house. But my husband's commute is the other significant factor.

Originally, I said we need to stay near the hospital where I am treated, relatively easy commute for me to work, stay near the gym I go to (because it is wonderful) and stay near my family members who live locally. Then we realized that as we downsize, my working will become a lesser requirement. And if I don't work, I can take a day each week to spend with family members so that is two things down.

The next issue of being near the wonderful gym I go to for dilapidated people is significant. But I hope if we move too far for it to be easy to get to three times a week, I might be able to find another gym with the right kind of equipment and supplement that with a physical therapist.

Finally, the remaining big issue is finding another hospital. I really don't want to but if necessary I would. I have been a mostly happy patient there for almost 35 years. All my medical records are there. But if it became more than a 45 minute drive, that might become an issue since I go there an average of once a week. I think that would become a last resort but could be under consideration. The bonus is that  it is about 10 minutes from my husband's job so that if he has a good commute chances are it would still be accessible for me.

I have considered if we move further out I might make a point of getting registered at a more local hospital so that the bulk of my medical history and allergies are there in case of an emergency visit. But I am not impressed with what would be the new local hospital's emergency room so that might be off the table.

Grr. I just want the damn move to be over so I can get through the all this packing and un packing.

Forward thinking

After getting eight feet of snow since January 25 (less than a month ago), I am trying to be forward thinking. We are not due to get a blizzard this week - which is fortunate because we have no more places to put the snow. The city of Boston called "Uncle" a while back. Today we woke up to 29 degrees. But nevertheless it will be around 5 degrees overnight tonight.

I look at my spring gardening catalogs and think about what to plant in the garden this year. I have no hope of planting anything soon as this is my front walk.

This would be a bit better.

(This is not my front walk, a cousin sent me the picture.)

But I digress. I am trying to be forward thinking. But I have a real  problem. The *(#&%$@&^ hospital has decided that it would be better to send an individual notice for each medical appointment a week or two before it, instead of a list of all appointments.

Look, I have chemobrain, fibro fog and general forgetfulness. I need you to send me long lists of appointments so I can keep track of them, especially when you change them on me. If I knew who to complain to on this I would.

But since I do have a doctor appointment tomorrow I will be sure to ask for an updated list so I can remember.