How to plan for a long hospital stay

Planning a lengthy hospital stay is like planning any extended vacation or business trip, with the difference that transitioning to hospital life means transitioning to no longer being in control, where choice is limited, and where one is dependent on others.

Given my 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. Faced with cancer treatment, the cliché of getting your affairs in order, medical-speak for possible death, applies. It means joint bank accounts, an up-to-date will, a personal care power of attorney with a ‘Do not resuscitate’ clause if that is your wish, and any other instructions that will make it easier for family members should the unfortunate happen.

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

Financial. Depending on your situation — whether or not you have good healthcare (US),  drug plan (Canada) and other benefits (e.g., sickness and disability plans) — will make a difference. Understand what is covered and what is not, any expected impact on savings, and any options to cover these. I was fortunate on all counts, with minimal financial worries; others may not be so lucky.

In Canada, hospitals make money from parking, the cafeteria, communications and other services. Explore ways to reduce these charges through nearby street parking and internet connectivity.

Ensure connectivity. Most hospitals  provide WiFi connectivity, hopefully free. I find email the most convenient way to stay connected, as it is less intrusive and requires less energy than phone calls, in addition to accessing the web. If you do not 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 centres have different policies.

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

Similarly for food. Hospital food is bland at best; home cooking is better. If you can eat, your family can bring food, and your cancer centre allows, try to have one home-cooked meal per day. Helps morale, trust me.

Have an exercise routine. This depends on your condition and whether or not you are in isolation, either to protect you or others (I was a number of times 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 a kilometre (1/2 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 provide an opportunity for some movement.

Remember – 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, as 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 “Insider tips to surviving your hospital stay,” 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 out-patient in the comfort of your home. ‘This too shall pass’ was my saying to get me through the difficult periods.

Andrew Griffith is a cancer survivor who blogs at My Lymphoma Journey.  He can be reached on Twitter @lymphomajourney.

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  • Larry Sheldon

    Add to the get-used-to-it steps–not true that there are no clocks–the world is governed by the arrival of The Priestly Rounds. There is no time when you will be allowed to rest, to sleep. Other occupants of your room will host huge parties, or will run the TV loud (and the TV near the ceiling insures that you will have flicker vertigo to boot). Or all of those.

    The bathroom will be next to somebody else’s bed and the path will be blocked by the crowd, by chairs, or by some other stuff.

    Your equipment, especially things like CPAP machines, will be placed such that the traffic around the other bed(s) will be constantly crashing into it.

    It is tru that they no longer awaken you for sleeping pills (if you can get them), but they will awaken you for all other meds, including pain killers and such. You will be awakened every few hours for blood-draws, for weighings, for blood pressures and other “vitals” even (or especially) if your reason for being there seems disassociated.

    The nurse station will be in the door way to your room or across the hall from it. It will have the only functioning telephone in three ZIPcodes. Most of the calls will be made to people who are stone deaf. The matters discussed will disgust or frighten you,

    You will see sign all around that say “Semper Discretus”. Nobody will know what it means.

    There are hospitals where these things are largely untrue–Nebraska Orthopedic is one,

    And several have now rationalized food service such that there is little legitimately to complain about (NOH and UNMC–NOH the superior because the kitchen is closer.

    Get used to the fact that the reasons you are in the hospital include access to equipment and facilities, easier for doctors to access you and several other good reasons that do not include you getting any rest.

    • Andrew Griffith

      Good observations. Given my low immunity, I benefitted from a single room which made some aspects easier.