Tonya, you did not fail your brother. Despite all our love, concern, advocacy, and vigilance cancer is a silent killer that can progress even with the best treatment in the world. The fact that you are continuing to support other patients and their families through this forum is a testimony to how much you loved him, and how involved you were in each other's lives. What you are feeling is not silly, it's normal grieving - particularly as you are coming up on his first anniversary - but it's also not real, and not deserved. How wonderful that you were there for him during his illness, and that you continue to be there for his family. You found the time when it mattered and that's what important.

Some thoughts on other questions:
#2: Probably not. A lot depends on what kind of work they do. If it's something that can be handled at home from a computer then there are times that's possible. When our doctor told us that Jack would be out of work for at least 6 months and maybe longer we didn't believe him. I watched Jack drag himself out of bed to go into his office before and after the surgeries and during the first few weeks of his radiation/chemo. Then came a day where the side effects kicked in big time and he couldn't focus on work anymore. It's a moment of realization that your "job" is now surviving.

#3: It's always important to stay positive and think like survivors. There's a strong mind-body connection that we really don't understand. The reality is that not everyone will get better but we have no way of knowing that upfront so I found that asking "why not him" helps me stay in survivor mode as opposed to the energy draining "why him", which doesn't.
There's an unrealistic expectation by people who have never experienced this illness that patients and caregivers will be bravely facing the challenges together as a poster couple for hope and faith. They tell you not to let negative thoughts in your head like that's really going to stop them. Whether we say our fears out loud or just think them in our private moments all of us experience the fear that the ones we love will not get better. It's bigger than will they die, it's also will they continue to be unable to swallow, or eat in a restaurant, or speak clearly, or hear normally, or open their mouths all the way, or regain their energy to go back to work, or live without pain? Will they get more side effects or complications and need yet more treatments? Am I now the only income in our family? The one all of us really want to know is will the cancer come back and no one can answer for us.
We each need to find our own coping mechanisms to help us live with the uncertainty. Some days I'm very together and positive and I see that we have a new future together. Other days I'm a mess waiting to wake up from a nightmare and I want my old life back. I think it's okay to have bad moments and days, but we need to fight to maintain a balance in our perspective. If we can do that then maybe that's what "getting better" is about.

Regards JoAnne


JoAnne - Caregiver to husband, cancer rt. tonsil, mets to soft palate, BOT, 7 lymph nodes - T3N2BM0, stage 4. Robotic assisted surgery, radical neck dissection 2/06; 30 IMTX treatments and 4 cycles of cisplatin completed June 06.