Strength in Numbers

After the meeting with Dr Norman, we headed to our first meeting of the Seattle Cancer Lifeline‘s Lymphoma Networking Group. It was so very worth it.

We had a lot of questions that would be difficult for the doctor to answer. Questions that make people who’ve already been through this ideal resources.

We picked up some food on our way; each meeting starts with a potluck. We put on name tags and started getting to know people.

Soon everybody moved to a room next door with their plates and we sat around a large table to begin introductions. Each person introduced themselves in a different way, but most included some part of their “Cancer ID” — if they had lymphoma, if they were a caregiver for someone with lymphoma, what kind of lymphoma, how they were doing.

After introductions, we started letting our questions flow. We got answers to our questions, answers to questions we didn’t know to ask, and advice from people who’d been through it.

Some tidbits:

• Stay positive, do the things you love, be surrounded by positive people. These are the things that will keep you from wallowing in despair or self-pity.
• R-CHOP did not keep most people from being able to work. Stay positive, stay motivated.
• Don’t put all of the obligation of moving things forward on your doctor. Be active and persistent in getting scans scheduled, educating yourself on your situation and possible courses of therapy, and being able to effectively discuss diagnosis and treatment. Through this you can help channel the doctor’s attention, energy, and expertise where it is best applied: on evaluating and treating the lymphoma.
• Be proactive in discussing health with family and friends. Many people will be unsure about what kinds of communication are OK and not OK with you, and this can create stress in friendships or family relationships. Make your willingness (or non-willingness) clear. Additionally, when you need help, make sure people know!
• There are cancer retreats at Harmony Hill on Hood Canal that are free for cancer patients and survivors. Awesome.
• We received some glowing recommendations of some lymphoma specialists to see at SCCA.
• Chemotherapy nurses have good advice about treatments, side effects, and how to mitigate them. Use their experience and expertise!
• Prednisone (part of CHOP) can be an emotional roller-coaster. And if you stop it suddenly without stepping down in doses, you’ll hit a brick wall and have no energy at all for the next few days.

It helped tremendously to talk to others who had done this before, and to hear about what they (and their spouses) endured to get through it. It was very encouraging, and I recommend it to anyone newly diagnosed with lymphoma.