Just In Passing

During the last week or so I have had some conversations, minor ones – basically asides, with colleagues at work, conversations that have stayed with me. I’ve thought about what was said over and over again; it has become a sort of validation for me. You see, it’s been 13 months since Kevin died and I still have awful days, days where I miss him so much I get that fullness in my chest and ache near my heart, where it’s hard to breathe and all I want to do is hide. When I get like this I feel like I must be weaker than most people, I feel ashamed, after all, shouldn’t I be holding it together better by now.

These conversations that I had recently, and I initiated them all, spoke to the hardship and ongoing adjustments death leaves in its wake. When I asked one co-worker how her sister was doing (her sister’s husband had died shortly after Kevin), she hesitated and I could hear the catch in her voice. She told me that it is still a struggle and that her sister’s journey continues to be painful, a pain she too was feeling judging by her tone and the sadness in her voice as she spoke. Another co-worker lost a sibling just before Kevin died, and again, when I inquired, the response spoke of turmoil and the waves of profound loss still resonating through the family.

I spoke with one of the members from my grief group that I happened to meet, by chance, at the bank. Our conversation was brief, but very connected. It’s hard to describe what I mean by a ‘connected’ conversation; to me it goes beyond language, a shared experience that creates a multilevel exchange of communication. There is the shared touch, we always touch each other, the intent gaze between us and then the conversation itself. Even the conversation is different. The question “how are you” is a meaningful one, a loaded one; we share loss, pain, confusion and loneliness. The answer to that question is very important.

For bystanders who might witness one of these exchanges, the conversation might seem disjointed, because there are no parameters around what is next said when you are speaking with a fellow traveler through bereavement. What is next said is usually “big” in the grief journey. For her, when I saw her last week, it was, “I wore his hat in the garden.” She always wore his hat before he died, it was a game they played; she couldn’t for the longest time, last week she did. My response back was, “I went to the cottage.” Our own code – plain, bald statements of small personal successes.

So yes, here I am 13 months later, and some days I feel like it is two steps forward, one step back. I want it to be all steps forward, even if they are baby steps, but it just isn’t happening yet. Life is still not normal for me. I haven’t fully developed or accepted my ‘new’ normal yet. When I hear that others are as messed up as me, it doesn’t make me feel better and it’s not comforting. It just is – statement of fact. Some cope well, some don’t.  Some days I am in the former group, others the latter.  That’s the hard part, not knowing what the day will bring.

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Post Chemo Treatment #3 – Day 1

Train Graffiti from 2007.  Human expression takes all forms..

Train Graffiti from 2007. Human expression takes all forms..

It is the first day after chemo treatment #3 and we have run into a glitch.  Hydration is required for at least the first two days after the treatment and we had believed a Standing Order was in place.  The visiting nurse came to the house this morning and advised us that the Orders they had received were date specific and that there were none for this round of chemo.  Translation, we need a new Order issued for every chemo treatment and there is not one prepared for today.  The nurse called Oncology and advised them that she was waiting for the Order before she would set up hydration.  She waited about a half an hour and nothing came through.  She’s since left and we are awaiting her return.  It’s been three hours and we don’t know what is going on.

This may seem minor but it is very disconcerting for a patient.  You want to think that everyone is well informed about your particular case, but in reality it seems the lines of communication are broken.  After the nurse left I called the hospital and spoke to the Triage Nurse.  I told her that my understanding was that after every treatment my husband would receive hydration for at minimum two days and that, at present, we had been told by the visiting nurse that there is no Standing Order in place.  I asked her to fax through a Standing Order for hydration to the Nursing Agency that our visiting nurses are attached to, an Order that covers the duration of his chemo treatments.   This was two hours ago.  I suspect that we are dealing with layers of bureaucracy now, we have to hope that the agency the nurses are attached to moves on relaying the communication to the visiting nurse.  So three steps to sort out a simple request, and a delay embedded in each one, before the patient gets any response.

At the same time I asked the Triage Nurse about the B12 injection, and if an Order had been sent through to set this up.  My husband hasn’t had one since the beginning of August.  His energy levels have diminished significantly.  We had assumed that these injections would be scheduled or mapped out as part of a treatment plan.  (I’m starting to wonder if a treatment plan actually exists beyond the chemotherapy infusions – maybe this isn’t Oncology’s role, maybe this is my GP’s?  Either way I need to know.)   I had inquired about the B12 injection at my husband’s chemotherapy treatment yesterday, and at that point we were able to have an injection scheduled, so my query to the Triage Nurse was to ensure that this was indeed on his file.  I still have questions about it – is Oncology faxing a prescription through to our local Pharmacy?  Is Oncology sending an Order to our visiting nurse to administer the injection?   The Triage Nurse advised she would have my Oncologist’s nurse call me back in this regard.

Here’s the thing, for Oncology this is a job, it’s personal only in the sense that it is a revenue and recognition stream.  For the Patient, this is a treatment they are engaged in to extend, enhance or even save their life – it’s intensely and profoundly personal.  For Oncology, the Patient is a client that they need to provide a service for, to use the drugs that cost millions of dollars to develop, to chart a statistical path that guides and informs treatments for future patients.  For the Patient, Oncology represents the pinnacle of healthcare, their new lifeline, saviour, in some cases last or only hope; it is a belief system that they cling to and pin all their future dreams on. Vastly different perspectives and how do you reconcile them – fact is, you can’t.  It just bears reminding that no one wants to be a statistic, but they do want to be a success story.

So Post Chemo Treatment Day 3 brings me full circle to something I mentioned months ago – don’t assume anything and ask questions about everything.  I had forgotten my own rule, or maybe I just figured that after three treatments we would be in the system and a process mapped out like a well oiled machine.  That was an assumption I will not make again.  We are a numbered file that feeds the statistics pool.  Consequently, before we leave chemo next time I will ask:  Are there hydration orders in place? When are our next treatments? Are there other treatments that he will require to ensure he has an optimal experience with his treatment?  I need to do and ask and say all of the things that will address the stress associated with this process.  Because less stress for me translates to less stress for the patient and that is what this all about.

The Dilemma – Sharing the News

Today we had a very familiar conversation with my sister-in-law.  It took me back to when my husband first found out he had cancer.  It was all about managing information flow.

Both my husband and his sister are very social individuals.  Perhaps it comes from being raised by immigrants; their parents brought them over from England when they were quite young.  Their cousins, uncles and aunts still remain overseas.  As newcomers to Canada they had to go out and make relationships.   To this day they both are very active within the local community.

When my husband got his diagnosis for cancer he was shattered.  He went from fine to Stage 4 in one day.  It was dark days and obviously still is troubled times.  For him to have to tell his story over and over was like torture.  He told a few, very few, family members and friends and it was all that he could bear.  It became a challenge for me to manage, since people didn’t want to get the news from me, they want to speak to him directly.  Imagine having to repeat over and over again the same awful news – and not when you are up to it, but rather on command, when someone decides to phone you.

My sister-in-law came by today and we talked about this.  She has quite a few phone calls on her answering machine and just doesn’t want to do the call back.  Can you blame her?  I know people are well meaning, but sometimes they can be unintentionally cruel.  To leave a message that says “Oh my God, I just heard the news!  Call me!”  does not make for an easy call back.  She already knows what it will be about and likely dreads hashing through the details to satisfy someone’s curiosity.  You see – it’s real for her, it’s not for the other person – it’s just a conversation and then they go back to their life.

Some people try to find common ground and they go through their own health aliments.  Really?  You think this helps – it’s cancer we’re talking about here folks – and it is not about you at this point.  Others will tell stories about people they knew who had cancer – sometimes there is no relevance whatsoever, does it help to know a  complete stranger got well?  And I should care because…?  Who’s to say it’s even true?

I think our favorite phone calls, and we still get these, are “Just thinking about you guys and thought I’d call.  If you need anything let me know.”  No pressure, no response required – but these are the ones that we usually call back – because we can determine what we talk about – we can even ignore the disease completely.

It’s all about empathy, compassion and consideration.