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Old 10-24-2011, 09:55 AM   #7
stampforariethan
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Originally Posted by muddy otter View Post
Hello Heather. My BIL got through throat cancer this spring and summer--not the esophagus but at the base of the tongue. He was stage 2 when diagnosed and chose the most aggressive possible treatment. It was incredibly rough on him but he did respond well and at the end, when they biopsied the surrounding lymph nodes, they found no trace of the cancer so his long term outlook is very hopeful.

Don't know if this helps, but I think your friend is doing absolutely the right thing in looking for someone to talk to. My sister and her DH had several friends who'd survived cancer who were able to share some perspective and sort of day-to-day tips on how they got through it. The cancer was different in each case but a lot of the need to balance hope and fear, and deal with some horribly painful and uncomfortable side effects without getting too overwhelmed and discouraged was kind of universal, unfortunately. As Calgramma said, even if a support group doesn't deal with her DH's specific type of cancer, perspective from other people facing the overall challenge of it still might help.

The practical advice I'd pass on from talking to my sister is:

1. She and her husband need to prepare to be their own best advocates in treatment. Each case is different--it's hard to find the balance between reading scary statistics and checking as much useful information as possible, but they found it helpful not only to know what their options were, but to know the advantages and disadvantages of each. When they didn't understand something the Dr said, they asked him to explain it. They also asked the Dr to go over treatment options in detail and got a 2nd opinion prior to starting treatment. A good Dr will not in any way be offended by any of this and will be glad to work with you (as their oncologist told them). There are scary statistics out there but there are also folks like Steve Jobs who survive for years and lead a major company along the way, too. The more you know and fight for the best possible treatment, the better your odds. A tougher balance was the practical side of hospital stays--my sister said that while she very much understood that nurses and staff had a lot to take care of, she'd also go find someone when DH was in pain, or just needed to go to the bathroom, if no one showed up in a reasonable amount of time.

2. Be prepared for friends to get weird. Some will respond really supportively, others will spout horror stories or platitudes that kind of make you want to bite them. Also lots of folks will say 'let me know what I can do to help' and then disappear. Be prepared to forgive people who don't know what to say, or bungle trying to say something helpful. At the same time, don't feel guilty if you need to avoid the people whose inability to deal means they can't let up on beating you over the head with stuff they think is helpful that ISN'T for you.

3. To get people to help, don't be afraid or shy about being specific. Stuff like, 'could you drive DH to chemo next week?' or pick up kids from school, gave friends a concrete sense of something manageable they could take care of that would help. Like dealing with the Dr, it can be kind of a do-it-yourself project. If you have one friend who'd be willing to make the calls, coordinate sending updates etc take them up on that. Sometimes getting people to help means telling them when you need to be left alone. My sister kept an e-mail list, used it to send updates when she had time and also used to it to ask folks not to call when things got overwhelming for them and she couldn't handle 12 phone calls about the same thing, no matter how well intentioned.

4. My sister said there were times that her DH needed to talk about some really scary stuff, including what would happen if he didn't survive. Afterwards, he told her that being able to talk to her without her freaking out or saying 'oh, everything will be fine, don't worry,' was a huge help to him because he said the really lonely part was needing to process those thoughts but worrying about upsetting anyone--especially my sister. She said that talking to the social worker at the hospital helped her know when he just needed her to listen, and gave her the support she needed to get through those really difficult, scary conversations.

5. One thing where my sister kind of needed someone to advocate for her was in encouraging her to take care of herself, too. I think if you can do this for your friend, that will be a huge gift to her. When someone is up against something that scary, people naturally gravitate towards worrying about the person who has cancer and forget how much it overwhelms the whole family--especially the primary caregiver. I don't think my sister would have enjoyed a spa treatment when she was going through everything, but one thing she did was walk to and from the hospital to get some time outdoors by herself, and some exercise. Also even if she had to order takeout food, she made sure she and her daughter got lots of veggies and lean protein--sounds goofy, but helped. Also kind of made up for the times she ate very large quantities of chocolate. She also said the social workers at the hospital were hugely helpful. It helped that BIL, even when he really felt awful, encouraged her to take those hours a couple of times a week to talk to people who helped her keep her perspective.

Don't know if any of that would help your friend, but I hope so. I'll keep her and her husband in my prayers. I very, very much hope things go well with his treatment, and that she has plenty of love and warm support as well.
Thank you! I am going to print this out and give it to her. All of this is such great advice. He has two more weeks of chemo and radiation and then he will have 8 weeks to recover from that. That is when they will decide if they need to operate or not! I am so hoping they get it with the chemo and radiation. I know that the operation is very risky!

Thank you for taking the time to share your advice with me and my friend!

Heather
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