By Andrew Griffith
Andrew
Griffith has mantle cell lymphoma and has had both an autologous (from
his own cells) and an allogeneic (from a donor) stem cell transplant,
in November 2009 and August 2011, respectively 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.
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 they are unclear, ask members of your
medical team (nurses are generally the best on practical questions).
Post them in an easy, visible place so they are quickly accessible when a 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 may feel weak upon your
return. In my case, this was particularly acute after being in isolation
after a c. difficile infection (a bacteria that causes severe
intestinal problems), even going up and down stairs was a challenge.
Get moving and restart your exercise routine: The major constraint for me, post-transplant, was the need to be close to a bathroom given the stomach issues, along with 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 build up to longer walks. My article 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 you formulate questions for your medical team.
A few minutes each day is 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 to email and blog, although for close family, we used the phone.
Whatever suits you, recognizing 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, but yet in a quiet area. Again, as life returns to normal, this becomes less necessary.
While no one approach fits everyone, thinking about these issues and discussing them with your caregiver should make your return easier. Remember, your goal on coming home is to speed your recovery and, all things permitting, minimize return visits to the hospital.
Read more posts by Andrew Griffith.
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