Just as preparing for a lengthy hospital stay requires planning, so does returning to home after the hospital. While your condition and strength will shape the best approach for you, my experience following my stem cell transplants may be helpful should you find yourself in this situation.
Before you leave get the information you need: Most hospitals are pretty good in providing written information sheets on follow-up care, related instructions, and warning signs when and who to call. Read them and have your caregiver read and understand them. If unclear, ask members of your medical team (nurses are generally the best on practical questions).
And post them in an easy, visible place when invariably some complication requires you to call.
Recognise your weakness: The nature of the treatment, and the likely limited opportunities for exercise in the hospital, will mean that you are weak upon your return. In my case, this was particularly acute after being in isolation after a C. Dificile infection when even going up and down stairs was a challenge.
Recognise other limitations. Given that chemo, radiation and in my case transplants are hard on the gut, your need to be closer to a bathroom may be an issue. And ensure you have a ‘bucket’ in the car in case you have nausea.
Get moving and restart your exercise routine: The major constraint for me, post-transplant, was the need to be close to a bathroom given diarrhea and related stomach issues, in addition to general weakness. Longer walks were out of the question, so I started as soon as I could walking around the block, in addition to short stints on a bike machine.
As my situation stabilized, I could then build-up to longer walks. The section on Building Back One’s Strength provides some suggestions.
Journal your condition: After a while, it begins to blur. So keep a journal – paper or electronic – that tracks how you are doing. This provides you with a sense of whether things are getting better or worse, responses to questions at clinic visits, and helps formulate questions for your medical team.
A few minutes each day to capture this all that you need. Of course, the journal can be broadened to capture related emotional and other issues should that be helpful (it was for me), but your medical team will be better placed to help you with even the minimal information.
Manage your time with family and friends: Given your weakness, you have to take the lead on what you feel up to or not. Let them know when you are ready for visits and whether you prefer email, writing blog updates, or the phone. My personal preference when weak is for email and my blog, although for close family, we used the phone.
Whatever suits you, recognising that as you build up your strength, this will change.
Set up your space: If you have a large enough house or apartment, sleep in a separate room. The combination of my stomach problems, plus my need to drink lots of fluid to protect my kidneys and consequent frequent bathroom breaks, made a separate room less disruptive for all.
During the day, I camped out in our den, to be close by yet in a quiet area. Again, as life returns to normal, this becomes less necessary.
While no one approach fits everyone, thinking about these and discussing with your caregiver should make your return easier. And remember, your goal on coming home is to speed your recovery and, all things permitting, minimise and return visits to the hospital.
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