Sometimes it’s not the message but the way it is delivered that is painful.
So as you may know not all tumors are malignant (cancer), so when you have a tumor removed it is tested to see whether or not it is malignant. Obviously the results dictate much of how your forward journey into treatment will unfold. In my view, the way this news, your results are delivered to you is pretty important.
A couple of days after Dylan’s grueling brain surgery, a young woman (oncology fellow) walked into the hospital room and said “you have a meeting with the oncology team in half an hour”. Now, being sleep deprived, an emotional wreck, alone in an unfamiliar place, this abrupt insensitive way of telling me that Dylan’s tumor is in fact cancer was honestly one of the most shocking experiences I have had. I think the look on my face said it all, as the words fumbled out of my mouth, my mind grasping for order and logic, totally jumbled up, I attempted to get some understandable sentence out to convey that I in fact didn’t even know that the biopsy results were back and had no idea the tumor was in fact malignant, but I certainly knew what oncology meant. She did say – oh has no one spoken to you about the results, and then proceeded to say she’d try find someone to tell me. Desperately trying to maintain a semblance of sanity I searched my jumbled mind to find a workable plan while I waited for someone to come and give me the results that I already knew in time for this meeting, knowing that Marco couldn’t get here in time, wondering if I call him and break this devastating news over the phone will he be okay, will he be safe to drive here, what to do, do I wait or do I call him. Standing just outside Dylan’s room the resident surgeon, the one who Dylan felt so comfortable with officially told me what I already knew.
Then a little while later, a few doors down I sat in a room, alone, surrounded by professionals and paperwork. The neurosurgeon, the oncology fellow, the social worker, the neuro oncology nurse coordinator, clinical trial nurses, and some other strangers. I was given a multitude of information, and a pile of forms that needed signing, preliminary tests were that the tumor was Medulloblastoma, an aggressive malignant tumor, but we needed further testing to see what type it was, and that would dictate the extent of treatment. I made notes, I signed forms, I cried and some unsavory words came out of my mouth. It was honestly one of the most challenging experiences I’ve ever had, perhaps from the combination of events from the week, lack of sleep and being alone in that room, maybe I felt intimidated.
In hindsight I would of been much more assertive, I would of said no to the meeting, I would of told them to make it later when Marco could be there, I would of contacted Marco and told him to come to the hospital that we were going to have a meeting, yip there’s a lot I would of done differently.
There was no oncologist at the meeting due to the fact that there was a conference on so that evening we had another meeting, Marco, myself and the oncologist, it was an easier meeting for me, the shock had worn offend I was a bit numb. But it was hard for Marco. We discussed how best to tell Dylan and Josh too, that was left for another day.
That was a hard day, and I think I still want to shoot the messenger.