Not too sure if anyone out there even reads half of what I post but writing a journal-like record of my thoughts and experiences is my form of “therapy”, I suppose. I’d like to think the things I’ve posted since my husband was diagnosed in 2018 have helped others more than it has irritated. This site has helped me work through so much and I bless the day I stumbled onto it. So thank you to those who have reached out to me over this past year and a half or so and those who have since. I wish I had more time to write and to write to everyone individually when they contact me but working full-time gets in the way of my doing that sometimes. But that doesn’t mean I don’t treasure your taking the time to write to me or send me those much-welcomed friend requests.
Who am I really? Just someone across the Atlantic, living in the upper Midwest in a little country we call the U.S. Why would I possibly think anyone else would read my verbose, convoluted posts with interest? I’d like to think it’s because the threads that connect us all in this mad world of all that is cancer know no geographical boundaries and what one experiences in that unwanted journey, others may also find commonality in them and stumble upon something that comforts, helps or explains.
My/our story . . . mine and my Terry’s . . . is unique and complicated, fraught with a level of sadness and frustration few can comprehend or find the time to read. But I’d like to think our experiences may help someone else facing that same level of fear and frustration.
I have posted much on this site since I’ve discovered it and I must periodically apologize if I tend to repeat myself or obsess over certain details I will never be able to forget that weave in and out of my “ramblings”. For that, I sincerely apologize.
Before I drone on again about our past experiences with his serious illnesses, I would like to offer a brief update to my recent posts. I / we have been concerned with my husband’s current knee / leg pain after finishing chemotherapy last year which has only surfaced in the last 6 weeks or so. That concern, we don’t feel, is unjustified as there are a great many late side effects and secondary malignancies that can happen years into remission and beyond; so when he started having difficulty with his left knee we tried to consult his oncologist, who (for a number of reasons surrounding her nursing staff’s communication with her) seemed to offer little more than a casual, “See your regular doctor.” It’s only been a year since he finished treatment and is in the high risk “pool” of patients with only a 48% chance of a 5-year survival and a 50/50 chance past that, into the future.
There simply was no choice but to go ahead with his RCHOP chemotherapy. That was not up for debate; but we wish we had been given a clearer picture of what life would be like AFTER treatment . . . what sorts of secondary cancers were possible and the other very real and serious physical long-term side effects that were likely/possible. He tolerated treatment fairly well, with few of the devastating consequences there can be from it. He even managed to work full-time through much of it. But it definitely had an effect on us both and our marriage and now, with the future even more uncertain than it is for EVERYone, we feel as though we’ve been charting our course through it all on our own, left to figure things out by ourselves with no counseling offered during those distressing months. No nutritional counseling was offered and, certainly, living this post-treatment phase is (in so many ways) just as troubling and uncertain.
We feel as though the time to “counsel” us was while we were both there for 8 hours at a time, over the course of six treatments. Taking the extra benefit time now, living on fumes with regard to what benefit time both of us have left at work, is simply not possible. It must be kept in reserve for what may lie ahead until we retire in a couple of years. And, frankly, surviving all of this has actually taught us how to communicate with each other better and our marriage could not (thankfully) be stronger. But it has been a long, hard journey and we would have welcomed the offer by a professional counselor to give us the support we needed, as patient, carer, and as a couple.
The way in which Terry’s doctor’s office treated our call for guidance with this latest knee pain was difficult to understand and so disappointing. We felt as though, since we finished chemo, we were left to figure things out on our own. Since then, however, we were able (I think, finally) to gain their attention and understanding in that they have recently told us that even though the results of his MRI on the 19th of this month showed nothing more than some unexplained “minor tibial ‘trauma’ “and that there was no malignancy, we were told that unless the pain resolved in a couple of weeks, a PET scan would be done to rule out more. We welcome that consideration for more testing which is the only way we can fully be reassured there isn’t a more serious problem again; but it will be part of the uncertainty we fear in living our lives, moving forward. We must acknowledge the possibilities but we do not “accept” a second of any of this. Serious illness is unfair. It is scary and it is unwanted. To “accept” it as some sort of masterplan, is ludicrous. It is random and it does not discriminate when it strikes. THAT much we have “accepted”.
This past 6 six weeks has also revealed Terry’s bones are now the victim of osteopenia/osteoporosis, another late side effect from treatment (primarily from all the steroids that were needed during chemotherapy), as well as the early stage of cataracts we recently found out about. These things, when compared to the Stage IV lymphoma he suffered from, can be treated if found early; but here in the States, at least, finding things “early” can be compared to nothing more than a “myth”. It is far cheaper and far less time-consuming to wait until things progress to the point where they HAVE to be treated than they are at the earliest stages. We find that incomprehensible and cruel; yet when faced with the medical costs of tests that have been proven to save lives, they are denied and limited by the health insurance industry here that, many times, interferes with responsible medical care. We are living proof of that, sadly, over the course of these many 13+ years, which I will try and articulate in my next blog, again apologizing beforehand if I end up repeating information read by others in the past on this site when I write the next time.
I have learned much and would like to, also, share that knowledge with anyone who may be interested, in how to navigate the challenges of such a system, as well as offer an explanation of sorts as to why I feel as compelled as I do to tell / repeat our story.
Until next time, I hope this finds you all well . . . “old” friends, as well as the “new”. I treasure your interest more than you realize.
Sincerely,
Dawn
