Heike, contrary to what common sense tells us, not all patients want to know about their condition and their treatment. My husband is a case in point. He refused to learn what his prognosis was when he was told that he had metastases in his lungs. When he was initially diagnosed, he did not want to come on this forum to read anything because in his view, it was all "too grim." It does make our job as caregivers a lot harder because we have to take responsibility for everything. I finally made an agreement with my husband -- I would take over the management but he would have to listen to me. It worked and got us through his first treatment and continues to work now that he is in a clinical trial.

Do your older children drive? Can they take over some of the driving when you husband starts treatment? Your local Cancer Society may likely have volunteer drivers who can pitch in and help as well so that you won't be running between your job and the hospital.

Your children could certainly be asked to take on some of the household chores and the nursing duties. They can, for example, keep an eye on his meds and his weight.

Your husband's oncologists should know about the meds he is taking. The same is true of the doctor who prescribes the meds for his bipolar disorder. Ask the latter to call the oncologists and ask for advice. Doctors routine do that so that the patient gets the right form of care. I even had the Emergency Room doctor calling the medical oncologist when my husband developed blood clots after his second chemo session.

The diagnosis and the looming treatment are overwhelming. Make it a point to take it one step at a time and try not to get ahead of yourself with too many "what if" questions. Deal with the issues when they arise but don't worry yourself about them before.

Do you have access to pastoral care or a therapist at your hospital? They may be good sources of support as they would understand very well what the caregiver of a cancer patient is going through.

I wonder if your husband will be fitted with a feeding tube before radiation starts. At our hospital, this is almost mandatory for Head and Neck patients who are getting radiation. If that is the case, you can at least not have to worry too much about forcing your husband to eat and drink as what he needs can be delivered through the tube.

Come and post when you have questions. We do have members who are from Australia and New Zealand. They will know more about the system and will probably give you good advice.

Good luck and keeping you in my thoughts.


Gloria
She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards

Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016.