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. Depending on your treatment and possible complications, you may end up spending a fair amount of time in the hospital (I spent close to a combined two months during each of my auto and allo SCTs, with roughly half of that in isolation).
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 disibility 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. Unless you need (or want) workplace connectivity, try to get away with only one device to use and charge.
Entertainment: iPods are great to drown out the background hum, both during day visits and in-patient. The laptop allowed me to watch DVDs (better choice of programming than commercial TV) to help pass the time, and post-relapse, the hospital had a number of large screen TVs with DVD players to make it even easier, making just using the iPad more than adequate. I read a lot as well, taking advantage of the quiet time when I had the energy.
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 (e.g., I had a C. Difficile infection a number of times).
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.1
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.
My Lymphoma Journey 