I actually have no idea what I was doing this day last year. I checked the blog and all I posted on May 13th, 2015 was this. When I try to step back from this shit storm of life and pretend that I was just observing the last year from a distance, I find it odd to think that at the moment I was posting about Winnie The Pooh, I was exactly eight months away from my last moments with Ben. I’m glad I didn’t know that at the time.
Now it has been four months since I have seen him, or heard his sweet voice.
Today I was interviewed by a woman doing research into how money should be spent to improve palliative care. I hope that if she takes anything that I said back to the palliative care teams, it would simply be that they need to stop throwing around the word “palliative” and start using “pain management.” Ben equated “pain” with life and “palliative” with death. All that ended up happening was that he refused palliative pain treatment because he thought if he accepted it, that meant he was dying. (Which he was, but how does one fight hard if they just blindly accept that?) If the first conversation with Dr P (radiology oncologist) had been phrased as “pain management,” which is completely separate and apart from “treatment of disease,” (or lack thereof, as the case may be) then perhaps he would have been more accepting of help and he wouldn’t have suffered so horribly, and so needlessly.
Side note: we had an awesome, fabulous pain management team. I wouldn’t want to leave the impression with anyone that they (and in particular Dr. H) were anything less than caring and helpful. But there is always room for improvement, right?
I also suggested that more consideration and conversation needs to be had with loved ones and children. Despite the fact that Ben had cancer, we all lived it. It is as much about those walking the shitty cancer path (with a small ‘c’) with the patient as it is about the patient. The kids and I were right here every moment with Ben. The doctors all knew from the get go that there was no cure for this, and that Ben’s time was short. I think in those situations there needs to be more push for realistic conversation with families about what is to come. As hard as it is to hear, I wish it would have been pushed on us (actually, on Ben) a bit more. Those conversations do not need to steal away hope, but there needs to be recognition of the fact that if the patient refuses to deal with what is happening, then the family will suffer long after they are gone in so many ways. The families should have the opportunity to be better prepared, and I think that is the doctor’s job to do that. It can’t fall on the loved ones to force that knowledge on the patient, and risk the patient being furious with them for the rest of their short life.
I remember Dr. B telling Ben, “everything you do from here on in is for your family, not for you.” Ahhh, Dr. B. He always has a knack for knowing exactly what should be said. Unfortunately, by the time Ben finally asked the question it was really too late for him to do anything that needed to be done to help us. And so we suffer even more than necessary. Losing Ben was a loss from which the kids and I will never recover, so I could have done without all the extra bullshit that came along with denial, quite frankly.
(I can feel Ben standing beside me as I type this, rubbing my arm and making some kind of joke as a substitute for saying “I’m sorry.” I know that he would be sorry if he saw how the denial affected things over the last few months. It’s ok Ben. I know you were also trying to protect us.)
In speaking with someone at work the other day, I said that I feel as though I lived in a war zone for nine months, and the war raged on for the next three months after he died. Then I suddenly found myself back at work, because I thought that was the right thing to do. I think to many it must seem like I had “enough time,” but I have not. I have had no time. I still can’t relax. Sorrow creeps up on me at the most unexpected moments, and my body aches constantly and I am exhausted. Utterly and completely exhausted to the point of wanting to collapse (and I sometimes do). And then at other times I am wide awake and completely unable to sleep. Usually late at night, which is why I tend to blog near the witching hour.
My mind and body need a rest. So do the kids. And so I have finally made an actual decision, which is a small miracle in itself.
I have decided to work until the end of June while the kids are in school, and then I will take a break. I will take the kids to Hawaii and I am considering bringing some of Ben’s ashes to scatter on the ocean while the sun shines. Ben loved Hawaii. When we come back from Hawaii the girls and I are taking off to go be in nature. We are going to drive south with no real plan, destination or schedule. I want us to spend time hiking and soaking up the natural beauty around us, and hopefully we will discover some peace again.
Maybe we’ll leave a little bit of Ben in various places that he would have loved. Maybe not. We’ll see. And we’ll talk about when to bury the rest of his ashes.