In summary of the past six weeks

January 5, 2012


Dear (insert specific names of members of my Radiation Team):

On Monday I’ll be just down the hall from you at a follow-up appointment with Oncology. (They do regular, routine follow-up to discuss long-term and lingering effects of chemotherapy.) While I’m there, I’d like you to stop by to address the long-term and lingering effects of radiation.

On the day of my last radiation I had already been in considerable pain for two weeks. I ran into the attending nurse in the lobby that day on my way out and asked when my follow-up would be. She said “We’ll call you in a few months.” I was surprised by that. I didn’t feel ready for such a dismissal, but I decided to hope the worst was over and I could look forward to smooth sailing.

That day I was also given a Certificate of Completion for six weeks of radiation, 30 treatments. Little did I know the end of treatment was but the beginning of the most difficult month of my life. (The Certificate, personally signed by all staff members, was subsequently crumbled into a ball and cast into the fireplace.)

Considering the aftermath of my radiation, I feel I was ill-prepared for the weeks that followed what your department deemed “completion.”

I was unprepared for the open sores continuing to worsen and the pain continuing to escalate over the ensuing weeks. My husband and I were not prepared to administer the level of care required for the angry, seeping sores that eventually took over the left side of my chest – an area approximately 8 inches long and 3 inches wide – following my scar lines. We were given my nurse’s handwritten yellow sticky note on burn care; we soon began to think my condition warranted considerably more information. (See enclosed photos. My husband suggested I post these on my blog to explain, graphically, my six-week absence from life as I knew it. I didn’t post the photos. I feared people would find them too distasteful.)

Now, a month out from completion of radiation, I continue to experience red-hot skin pain over the entire scar area along with intermittent shooting pain I’ve come to call “nerve pain” for lack of better understanding. There remains, as well, a small area requiring wound care. Last week I was finally able to wear clothes again (and thereby leave the house for anything other than radiation for the first time in six weeks). I still don’t leave the house, though, without pain pills, wound-care products, and anxiety meds.

I try to do without pain pills as much as possible, now using about 14 tablets a week of the prescription last written for me. I have no idea how long the pain is likely to persist; it would be nice to have some idea of what’s expected from here on out. I would appreciate a refill – and a ballpark guess as to how long I’ll be depending on painkillers.

Also, is there any alternative therapy? Massage, perhaps? Help me out here. I refuse to Google remedies for a condition you surely must see on a regular basis. My husband and I have grown a wee bit frustrated with trying to cope and figure things out on our own, though we are grateful for the times our friendly pharmacist, Kurt, offered helpful suggestions.

I hope to see you on Monday, then, to shed some light on the specific concerns above. I will be in the chemo room for at least an hour receiving I.V. herceptin following a discussion of remaining chemo side effects and a MUGA scan to detect possible heart damage due to chemo. The oncology department seems intent on keeping an eye on how I’m doing. It’s reassuring; I feel good about their care.

Sincerely,





PS—It is true that each time I phoned your staff for help during the worst of times, I was offered the option of “being seen.” Twice I turned down the offer. Not only was I in too much distress to even imagine wearing clothes, but since I didn’t feel well-served by phone, I could see little point in putting myself through the exercise of being seen in person.