When I started this journey I heard about getting to the point that you suddenly feel lost...I didn't believe them. How could anyone ever feel lost/abandoned when the entire medical field is working for and on you at an alarming pace and you are seeing your oncologist every week....WELL...I am a believer!!!! It is really strange to be out of the regimental schedule of chemo every two weeks. Your life just gets into such a routine and you get so used to seeing the same nurses every time (not to mention the home care nurses that visit every second day) that you get to form a strong but short term friendship with them and so when that is suddenly gone.....you miss them and feel like suddenly everyone has forgotten you. Your oncology appt goes from every week to "see you in 4 months" and you are left to your own defenses....except for those 5 weeks of radiation. You end up in a void and don't really know who you are supposed to turn to for your health care now. Seriously....oncology, family doctor, radiation or surgeon??? Let's be real....just because treatment is over....the side effects are most certainly not!!! I have been nauseated every single day, not to mention tired, feeling like I have a head cold, oh ya.....the migraine....just my little bonus cause it can just pop up anytime and stay for as long as it wants...ARGGG!!!
As a result of your major surgery (missing a boob) and all the gallons of toxic sludge they have pumped thru you at a short period of time...your body just has some weird things happening so questions pop up....this is when you feel lost and confused as to which of you medical team do you call now.
I have finally broken it down to this...
- missing boob issues - Oncology
- skin burns/breakdown - Radiation
- heart concerns - Cardio-Oncology
- removal of other boob - Surgeon
- everything else - Family Doctor
It feels really strange to dance in this mind field that you need to divide yourself into so many specialties. Life was so simple before this little life altering TROLL took up residence and I am beginning to see that he will always be part of my life and in the back of my mind!!