Hi Delia:

I wanted to respond the question you asked in your first post about caregivers having difficulty letting go. It's a very true phenomonen that hits like a ton of very large bricks once the active treatment phase is over. Most caregivers say they feel like they have focus, and purpose, and are "doing something" during the active phase of treatment when the surgery, XRT, and/or chemo is being given.

The phase after, known as "watchful waiting", the time when your loved one has follow-up visits, and screens for recurrence, is usually the most difficult for caregivers to bear because it feels that there is no control over the outcome.Interestingly, most survivors do well in this phase and the caregivers become more anxious.This can last for variable amounts of time and can wax and wane around appointments and follow-up scans.

I also think this is very transitional time for a caregiver who wants desperately to see the person he/she loves as a survivor, but fears that he/she will remain helpless to the experience of cancer that permanently changed your life together and your relationship. Part of the process is also learning that the survivor needs you less when you still may feel you need to hover.

My husband Dave, almost 4 years past treatment for tonsil cancer, told me around year 2 post-treatment,that we needed to compromise because my anxiety around his survivorship was making him nervous. So, now he goes to his medical appointments solo but calls me immediately afterward because he knows I will be frantic until I hear.I also prepare of list of my questions which he reviews with his doctor so I do feel a part of the process.

I tend to get especially anxious around the time of the anniversary of his diagnosis (August). I am both grateful of getting closer to that almighty fiver year mark and fearful that something will happen to prevent us from getting there.

In short, it is most often an anxiety game for the caregivers. Its' important for you to find a safe place for you to vent your fears about letting go so you can be fully present for the person you love and actively try to let him reclaim life in a new and different way.

Easier said than done but lots of good people at OCF to help...

Best,

Kim