Wednesday, December 29, 2010

Sharing this from my friends at Patients Against Lymphoma

Feel free to print this out and give it to an especially close friend who can share it with your other friends.
How to Talk and How NOT To Talk To A Friend Who Has Cancer

If you feel nervous about talking with your friend, here are some pointers from cancer patients.

Be yourself and don’t be afraid. 
Your friend doesn’t expect perfection. Some people have a knack for expression, some people are lost. Your friend sees that you care and that you are doing your best. A warm hug can communicate everything.

Don’t push advice. 
You probably don’t know enough about your friend's case to really be useful. It can be tiresome and confusing to hear recommendations that may contradict the advice from one's oncologist. Each case is different. What works for one patient may not be appropriate for another case with slightly different features. So no need to say, “My friend Paula had your cancer and she said that her doctors recommended chemo every week…”

When in doubt, email an offer of help or companionship.
Unreturned phone calls can be a burden on your friend. Also, the phone ringing might wake him or her up from a much need nap after a sleepless night or a difficult treatment.  Or a call might force your friend to think about cancer during a time when he or she is taking a mental vacation. Always end a voice message or email  with “No need to reply; I am just thinking about you.”

Listen more than you talk.
You are there for your friend, the cancer survivor. Give him or her some runway to talk about whatever’s on their mind …an annoying insurance problem, an insensitive staff member at the oncologist's, a funny card they got, an aching back, an old car that isn’t selling, the kids, their parents, their spouse...anything.

Don’t force the cancer conversation.
If she’s trying to talk about her husband’s nasty boss, and you came to get the latest update on treatment, stick with the nasty boss stories. Cancer isn’t the only thing going on your friend's life.

Don’t expect her or him to follow up on every suggestion.
Many people will suggest that the friend with cancer call another friend who had cancer or read a new article about an ongoing clinical trial or natural remedy. These can be very helpful, but can also feel like another thing for the To Do list. Just pass the info along in a card or email and leave it there.

Focus. Take off your coat, sit down, turn off your cell phone. If your friend starts to open up and vent, stay with them. It helps to tell your friend up front how long you can spend so she or he doesn’t worry that their mood sent you packing.

Don’t rush your friend through the hard stuff. Your friend is sick, scared, bald, uncomfortable, and tired. Try not to quickly stifle these truths with platitudes like, “You’ve got to stay positive” and “This is going to be over soon” or "It will be OK." Let your friend complain and cry and feel a little self pity before you start to help her or him put themselves back together again.

Mirror your friend's feelings to show you understand, such as, "It sounds like you feel overwhelmed and low right now. That's got to be normal. Nobody can keep positive all the time," or "That must have been frustrating." Whatever is appropriate and real. Then give your friend some time to express how they feel. By letting the person feel it and saying something supportive in response, rather than contradictory or "balancing" you can help more. It's like driving into a skid in the rain. Going with the flow and turning into the skid is the best and fastest way out and back into control. Contradicting or trying to force the bright or positive perspective only makes your friend feel isolated and unheard.

Respect your friend's experience. Don’t say “I know how you feel” unless you actually do. Don’t say “My friend had the exact same thing and she’s doing great.” Every cancer case has unique elements.

Skip the bad stories. Your friend's mention of cancer is not your cue to launch into a story of someone you knew of who had a horrific experience. Just as you shouldn't be the cheerleader of denial (Stay strong. Attitude is everything. You're gonna be fine!), you shouldn't be Debbie Downer full of dismal news, either.

For Heaven's sake, don't ask how long your friend has.  Stage IV blood cancers are often reversible and many stage IV solid cancers can be managed.  This also goes for cards from estate lawyers and links for do-it-yourself wills!

Adapted from Circus of Cancer

Sunday, December 12, 2010

Final Round of R-CHOP and Post Treatment Game Plan

Final Round of R-CHOP with the great staff of GHCI!

So it is now Day 3 post last round of chemotherapy.  As has been the case with the last few rounds, I've spent most of the last few days sleeping and semi-watching dvds.  Side effects seem to be the same, no better, no worse.  More hot flashes but I have a feeling I may just have to get used to those. 

I wish I had more energy for a nice long post but maybe in the next few days I will get there.  I did want to update you all on my post treatment game plan.

On December 30th, I will be having CT Scans of all the areas where there was cancer: Neck, Chest and Abdomen. Plus, my oncologist wants a post treatment baseline mammogram of the breast. I will do a follow up with him middle of January and if blood work, scans and mammogram all look good, we will just do blood work every 3 months and PET Scans every 6 months for the first 2 years. He wants me to keep the port in for at least the first 6 months and I told him “I love that thing and I have no problem leaving it as long as possible” .