So you've just gotten the dignosis of cancer. How do you let people know what's going on without being overwelmed. We did a few basic things that helped a lot. These are not all my
ideas but are suggestions that were passed on to our family.
1) Have a friend or an extended family member act as your point
person
There are a lot of details that you will not be
ready for: meals, picking siblings up, receiving gifts, companies wanting to
sell you services (it really happens). You will need someone to manage it. I
would suggest that this person be someone who you can share with but doesn't necessarily
share with everyone else. Sisters and brothers are great at this, but so are
members of your church family, a close friend, or so on.
They need to be someone who can field questions,
keep track of who brought what, and help keep the household organized while you
focus on getting through the days. If, like in my case, you live a few hours
from the hospital and don't get home durring hosptal visits this person or people
may be willing to drive up and drop stuff off...like underpants and caffeine
(yup, guess what I forgot to pack enough of). Pick someone who will be less
emotionally raw during this time and is someone with whom you can very honest
without fear. This is going to be someone who sees you at your absolute low
when there is no veil of civility between you.
2) Have people call the hospital phone not your cell phone
You will want your cell phone for your own use.
You're on information overload, even if you don't feel like you are trust
me...you are. A good way to test this is count how many decisions are you
making that you fully understand both the short and long term consequences. I
mean really understand. Now count all the rest. Yeah, that's overload. So the
hospital phone becomes the office phone and you cell is the home phone. You'll
have different kinds of conversations on each.
3) Create a contact list and an old fashion telephone chain
Think of it as an analogue social media with a
human voice interface. How's that for some junk-English, marketing lingo. In
other words agree between you and your contact person who should call whom to
pass along useful knowledge.
4) Group your emails or social media contacts
Socal Media is useful for blasts, but sometimes
there are smaller groups you share different information with. By sorting
friends into different groups helps you chunk information in your own head. You
are a multifaceted person. You share information differently depending on your social
settings. Everyone does this. Shape the way you contact people to reflect this.
5) Tell people: Don't send 'get well soon' cards
With cancer, no one 'Get's Well Soon'. Most
childhood cancers have protocols that run for at least two years. Most will
'Get Well', it’s just not 'Soon'. This trip will last for years. You and your
child will be back and forth to clinics and treatments. There will be
month-and-months of chemo and medications with names so long they wrap around
the bottle. IT will end, just not soon.
This was something we did and I've been thanked a
few times for it. Letting people know up front that this is going to be going
on for years is really helpful. Everyone besides the primary caregivers
(including your patient) is outside the bubble forming around you; they will need help
understanding your child's timeline.
So, if not Get Well Soon cards than what? We asked
people to send jokey cards and post cards from interesting places. My son loves travel and a few friends
picked-up on this and started a post card campaign. It is still going on, just like
the cancer. Every card is a sign that love lasts longer than cancer.
Getting overwehlmed is way too easy; I hope these tips help you. Most importantly remember that you are not
alone in this, dispite the bubble. There are lots of people out there who will want to help you. All you
need do is ask. I say ‘all’, but we know that is really hard sometimes. Sometimes asking is an act of faith. I hope you have the faith to reach out.
PG Somerset
