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Preparing for a Long Hospital Stay

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longstaypicfinal.jpgBy Andrew Griffith

Andrew Griffith has mantle cell lymphoma and has had an auto (November 2009) and an allo (August 2011) stem cell transplant. He lives in Canada and is married with two young adult children. He blogs at www.lymphomajourney.wordpress.com and can be followed on Twitter @lymphomajourney.

Planning a lengthy hospital stay is a bit like planning any extended vacation or business trip. The biggest difference being that hospital life means getting used to no longer being in control. Long hospital stays require you to accept limited choices and get comfortable with dependence on others.

Given my experience with lengthy hospital stays as part of my stem cell transplants -- some planned, some as a result of complications -- the following may be helpful, should you find yourself in this situation.

Get your life in order:
When faced with a cancer diagnosis the cliché of getting your affairs in order, for the possibility of death, becomes real. It means opening joint bank accounts, updating your will, assigning a personal care power of attorney with a "do not resuscitate" clause if that's your wish, and any other instructions that will make it easier for family members if the unfortunate happens.

On the emotional side, if there's need for family or other reconciliations, do it now rather than later.

Financial: Depending on your situation -- whether or not you have good health care, drug plan and other benefits (e.g., sickness and disability plans) -- will make a difference.
Understand what is and isn't covered. Identify any expected impact on your savings, and any options you may have to cover what you or insurance cannot.

Ensure connectivity: Most hospitals provide Wi-Fi connectivity. I find email the most convenient way to stay connected, as it's less intrusive and requires less energy than phone calls. If you don't have a laptop or iPad, get or borrow one if you can, as the days are long without one.

Know hospital policies on visitors and food, and check for flexibility: Different cancer and stem cell transplant centers have different policies.

While all visitors must be infection-free given the low immunity of patients, visiting times and numbers vary -- although, there's some room to negotiate. Once when a nurse gave me a hard time about having an additional visitor, I just gave her a "please" look and she backed off.

Similarly for food. Hospital food can be bland at best; home cooking is better. If you can eat, and your cancer center allows it, ask your family to bring in food in. Try to have one home-cooked meal per day. It helps with morale, trust me.

Have an 'exercise' routine:
This depends on your condition and whether or not you're in isolation, to protect you or others (a number of times I was a C. Difficile infection).

If not in isolation, try to get in the habit of walking the loop around the ward a few times a day. In my ward, 10 laps was about one-half mile and a number of us would exchange greetings as we did our laps.

If in isolation, your hospital may have bike machines or equivalent that provides you an opportunity for some movement.

Remember to listen to your body. Push yourself a little bit to move, but not too much.
Get to know all the staff: For longer (or repeating) stays, you have the opportunity to get to know staff, and they to know you. Be nice to them at all levels, including cleaning staff, and they will be nicer to you. Please and thank you's go far.

Go with the flow: Read "Top 10 Ways To Survive a Hospital Stay While Maintaining Your Sanity," the best and funniest advice there is. Example:

Be patient. There is no clock in a hospital. Nobody knows when any of your tests are scheduled to be done. Not the cleaning lady. Not your nurse. Not even the doctor doing the procedure knows when you're up. You'll know when you're up when they cart you away. Believing anything otherwise will just make you frustrated.

And remember, your objective is to be treated and get out as soon as possible, to allow the rest of your recovery as an outpatient in the comfort of your home. "This too shall pass" was my saying to get me through the difficult periods.

Read more posts by Andrew Griffith.

Resources
1 Top 10 Ways To Survive a Hospital Stay While Maintaining Your Sanity, in
Happy Hospitalist, January 2012

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