I’ve come to realize that there are certain conversations that are almost universal for cancer patients. Just like the emotional stages one goes through, shock, anger, denial, acceptance – there are conversations that support each of those stages that must be remarkably similar. There is one conversation that we had repeatedly in the few months previous to this. It’s basis stems from a meeting we had in early July of this year. It was our first meeting with the oncology radiologist and occurred right after my husband got his cancer diagnosis.
In his mind, my husband had gone from healthy to stage 4 lung/bone overnight. When we met with the oncology radiologist we asked a number of questions which resulted in a prognosis which I have summarized. It is not a verbatim summary, rather it is what we “heard” and may not be exactly what was “said.” But remember this is not about the radiologist – so what we “heard” is all that matters. In short the radiologist said something like this: ‘You have Stage 4 Cancer. Your prognosis is three to six months. You will never be cured. You will never go into remission. Our work will be palliative, to hopefully provide you with a greater degree of physical comfort during your remaining months.’ Nothing wrong with this, probably based on years of experience and observation as a Rad. However, let’s spin this differently and put it into a simple perspective. It’s like a tennis coach saying to a player just before the big match, ‘The player you are up against is stronger than you. You’re going to lose. It may go three sets or four, but you will lose. Just make the best of it and soon it will be over.’
As a result of that meeting with the oncology radiologist we, my husband and I, have repeatedly had one conversation in particular. It is a conversation that I think could have been avoided if the “facts” were presented differently. The conversation was never the same, but in general here’s how it went:
Him: “I don’t know what this is all for. Why am I doing this? I’ll never be cured. What’s the point?”
Me: “The point is you don’t know what lies ahead – the radiologist doesn’t know what lies ahead. The radiologist doesn’t know you. All the radiologist told you in that meeting was the general statistics on this particular type of cancer.”
Him: “But I will never go into remission, I will always have cancer. I will never not be without cancer.”
Me: “True. But lots of people live with disease their whole lives and are never without them. People with HIV will always have HIV, diabetics will always have diabetes. Amputees can never get their limbs back. You have cancer. It needs to be controlled and can be. What we need to do is focus on progression remission.”
The thing is, I don’t think we ever should have had to have this conversation, no one should have to have a conversation like this. It is a waste of energy at a time when energy is in short supply. I think that first meeting back in July, a meeting which is embedded in his brain, has taken on monumental proportions.
Definitely the patient needs to know that their prognosis is dire, but even then provide some hope. Qualifiers such as “at the present”, “at this time”, “based on the existing indicators” suggest that the patient can have some influence on their situation. I am not suggesting giving false hope – lord knows we had no hope when we left that initial meeting. I believe that medical professionals should be able to offer their observations and informed opinions when asked, but how they present them is quite significant. When we were querying what the goal was with the treatment there was no mention of progression remission – this is something I went out and found while researching cyberspace. And yes, most Stage 4 patients are unlikely to achieve this – but still some do. Hope, even a glimmer of it, can make a difference in the outlook and determination of a patient.