I've been absent from the site for a while but always feel like I have a home here. As with many others, "No news is good news", right? That's the case more than not; so, I'm no different in that regard I suppose. Things, since I last "blogged" an update of sorts about my husband's Non-Hodgkin's Diffuse Large B Cell Lymphoma (late Stage III/Stage IV) remission have been good. We managed to have a great summer this past year and have been able to celebrate birthdays, holidays and warm summer days together without incident. I had a few things crop up that were of concern but, for the most part, life has been pretty darn great enjoying his complete remission. We decided the quarterly "follow-ups" that were supposed to happen every three months for this first year weren't for us. We went for the first couple but at the second one last April we told his oncologist that we felt more comfortable coming back every 6 months, not the usual every 3 or 4 month visits mostly because all that is done is lab work, no scans and only a "quick" lookover, basically. We both work full-time so going to these appointments is of little reassurance and requires us to use valuable leave time that has all but been exhausted because of past serious illness.
In any event, I did not accompany Terry when he went this past October. To be honest, just walking into that building causes me a fair amount of emotional upset and since little was accomplished in going, I decided to skip it. Terry told his doctor that he would prefer to only go once a year unless something concerning developed before then. The doctor reluctantly agreed; so we thought we could take a break from all these appointments and try our best to put the past where it belongs, in the past.
Since then, however, (only a week later) he woke up one morning with some pretty serious left knee pain and a limp when he got out of bed. Of course, we became concerned when weeks went by without much resolution. It's been over three weeks and the pain/limp continue to come and go. No pain when sitting or sleeping yet bothers him when putting pressure on it walking or standing. At times, he says, it feels pretty good but then after trying to do much more of anything, it returns.
What was most distressing to us was that when we called the oncologist's office, we were given a series of conflicting suggestions as to what to do and the runaround we are only (sadly) all too familiar with from years of neglect and misdiagnoses. Eventually, we were told to make an appointment with oncology to come up with a plan of action. The miscommunication, it would seem, stemmed from clerical/office staff confusion and misdirection and will (hopefully) not be repeated. He has a bone density test scheduled for tomorrow and an MRI scheduled for December 2nd.
I have to say, in my own defense, that these past 13+ years of serious illness and medical neglect have left me (after each one) feeling less trusting and disillusioned with the medical profession over here in the States. And, with each one, I have learned to advocate for my husband better than the last time. Each one, however, has left me feeling less and less tolerant of miscommunications and confusion like this last time, not to mention great disappointment in a system we are supposed to trust. So, this time I did more research into the multitude of secondary cancers that can follow lymphoma and the treatment (RCHOP in his case) given which, obviously, HAD to be given to avoid the alternative. There, simply, was no choice in that decision. However, what we have come to ponder is why a more complete list of possibilities was not disclosed as to subsequent malignancies and/or late side effects that can (in many cases) take years to present themselves. Of concern, also, was the fact we were never offered counseling of any sort, living through the disease and subsequent treatment, which we found odd; especially since we were there for 8 hours each time, over a course of six treatments. THAT would have been the time to counsel us; both as patient and carer, not to mention as a couple and all that ensues with a cancer diagnosis. Not even a nutritionist's counsel was offered.
Needless to say this experience with cancer pushed me to the limit I thought I had reached with Terry's past illnesses. We have an appointment with a counselor later this month who can hopefully document our complicated journey through the medical profession's maze in seeking and finding adequate care and our story and our suggestions will help someone else.
I will try and post more when we find out if we face yet more challenges or if we have had our sense of worry heightened needlessly.
I sincerely thank you for your support and understanding.
