Another Milestone

On the weekend I faced yet one more milestone.  Milestones come in many forms, spurred by direct and indirect associations.  We think of the first birthday, anniversary, Christmas and so on, but there are other firsts that we have to face.  The first time you enter the house and really, finally, realize that you are on your own.  The first time you find yourself in a situation that you can’t control, but you have to, because you are on your own.  Learning to do things that weren’t “your role” in the relationship, and the frustration of being clouded by grief while you try to do your learning.  All those firsts have to be faced.  Sometimes it feels like the first time over and over again; walking into the house at the end of the day is my perpetual first.

The milestone I faced on the weekend was a birthday party.  A lovely, wonderful party for one of my husband’s longtime friends.  It was an afternoon affair, and I knew I was certain to know at least half of the crowd.  I knew that invariably someone would want to talk about Kevin, my late husband.  It’s been over six months now so I’ve developed a coping mechanism that usually can carry me through, and I felt reasonably confident that I could manage it without losing my composure.

Once there I recognized that most of the people in the room had experienced an intense and close loss; I was not the only one.  The loss of a child, parent, spouse – unfortunately, death was too well represented in the room.  I had read somewhere recently that at any one point in time at least 7 to 9 per cent of the people in the world were experiencing extreme grief associated with the death of a close family member.  Certainly we exceeded that number in the group that met on Saturday.

It was a lovely day, and perhaps because almost every one attending had been levelled by death quite recently, it felt as if there was a more heightened awareness and appreciation of living, of life.  Life is what Kevin fought so hard to sustain.  Life is what Kevin brought to a room.  I missed him sorely at the birthday party and I suspect that I was not the only one.  Kevin was outrageous and he would have been in prime form for this particular birthday.

The only time I faltered during the party was at gift opening time.  We were almost to the end when a little boy of about three pulled up a chair beside the man of the hour and said, “Pops, you got gifts?”  It was so sweet that it broke my heart; I think everyone in the room caught their breath, and we all watched as they opened the rest of the gifts together, grandfather and grandson, laughing, joking, loving.  A day to celebrate and appreciate.

It was emotional, I won’t lie.  While I was at the party, I was happy. When I went home it was to an empty house, my perpetual first.  Sleep didn’t come easily that night, there were so many memories that flooded my mind, all good, but poignant.  But, thank God for memories, at the end of the day, thank God for memories.

Stress, Sleeplessness and the Panic Attack

I think back on my return to work and wonder why I felt compelled to go back so soon.  I think I so desperately needed structure in my life that I pinned all of my hopes on getting that structure from the workplace.  I believed that the sooner I got back to work the sooner I could regain control of my life and re-establish routine.  Last week was my first week back and I worked three half days, Monday, Wednesday and Friday.  Monday went relatively well, I was able to slide in and out of the building without being noticed, or at least I think I was.  So, in my mind, a bit of a success.

Wednesday, like Monday, went well.  In general, people were giving me my space, there was lots of work to do.  It was what I thought I needed, a purpose for being. Perhaps I was making progress after all. On my drive home from work I remember thinking, ‘Okay, so far so good.  Two days down, things are going to be okay.’  From my workplace to my house is a short drive, no major highways to travel on, about 12 – 15 minutes depending on the day.  At the only major intersection I have to cross on my way home, I had an anxiety attack.

The traffic lights in my lane had turned red and I had to stop.  I was the first car at the intersection waiting to cross.  Suddenly, with no warning, I panicked that I wouldn’t be able to keep my foot on the brake pedal and that I would drive into traffic before the light changed.  It felt like I had no control over my actions.  Everything seemed to be closing in around me, I was being pinned down to my seat.  I had the sensation of my head going forward while my spine seemed to lift, my arms and legs felt unattached to my body – there but not there, my chest felt tight and there was a tingling all down my back.

I had an overwhelming compulsion to move, I had to move. I felt my anxiety intensifying with every millisecond that the light remained red.  The thoughts in my head were out of control, completely irrational.  I needed to distract myself from my own mind.  I turned up the radio and sang to the song that was on.  I recited the alphabet out loud. I was in full blown recovery mode, trying anything to override the panic that was filling my mind, to refocus on what and where I was.

Needless to say, I made it across the intersection. After a few minutes in a parking lot to collect my thoughts (while I recited the alphabet as well as the 5 times table) and regain control of my subconscious mind, I got back on the road.  I took side roads and minimized the number of stops that I had to make, deciding that a stop sign was a better alternative to a stop light since it seemed that when I had to stop my vehicle the feeling of loss of control would well up again.

I know that this incident was the culmination of a lot of different things.  All the stress, sadness, tension, pressure, fear and exhaustion of the last few weeks had put me into a tailspin.  Grief has profound effects on an individual and, like it or not, the body can only take so much before it starts to break down.  Although my return to work was inevitable, it seems that my body was sending me a message that I may have taken on too much too soon.


A Long Day

The pathway near our house - beautiful but can be so lonely.

The pathway near our house.  It is a nice walk when you need to clear your mind. 

Today was a very long day.  We spent it waiting for news that we didn’t get.  Waiting for test results can play on one’s nerves.  My husband is almost fatalistic about the results of the bone scan.  He’s gone to a dark place and there is no moving him out of it until we get the news from the Oncologist.  We’ve had minimal communication between the two of us today since he has nothing to say.  He’s quite withdrawn and has no appetite.  The pain in his neck/shoulder is unbearable and nothing seems to touch it.  Personally I think that the pain, although quite real, is magnified greatly by the anxiety and fear that is playing in his mind.  He won’t speak about his fears because he knows it would upset me, however, withdrawing is equally upsetting.  It’s difficult for me to stay upbeat or positive when I’ve been shut out of the private hell he is in.  Over the course of the day we’ve had a few phone calls and our very pregnant daughter (8 months now) stopped by for a quick visit; her visit relieved the tedium, but that relief was short lived, he retreated back into his world once she left.

Tomorrow we should have an answer one way or the other as to what is going on in his bones and that will take away the dreadful mind-numbing fear of the unknown.  Fingers crossed.

Picc Line Out

Today was a day where I wept, I literally cried most of the day.  The uncertainty of the future ahead of us is frightening.  I worry that we, and in particular that I, won’t be up to it.  Two days ago I had the confidence to work with my husband in facing his battle against cancer, but that same day we were required to make a decision about his future treatment.  The two options that we discussed with the Oncologist yielded almost the same outcomes when trialled. The statistics offered weren’t compelling enough to justify staying on chemo treatments.  It seemed obvious that with care and diligence we could figure out a way to stave off or at least try to stay ahead of the disease.  When we walked out of the hospital that day, after my husband had his picc line removed – instead of feeling elated we left feeling totally unsettled.  We wondered whether we had done the right thing?  We had the choice to continue on a treatment plan, should we have?

Today we talked about what we are both feeling.  It feels like our support has been pulled out from under us, that we have lost the big machine (the hospital and its supports) and that we are now entirely on our own.  We will make all the decisions, there is no medical team meeting to discuss how to proceed.  It’s just us.  Who are we?  What do we know?  The anxiety is frightening in its intensity.  It’s all well and good to say we’ve got a plan – but is it the right plan?  There is a life in the balance here.  As the primary caregiver am I up to the job?  The sense of responsibility is almost too immense.  What if I miss something, some symptom or indicators?  Obviously I fell short in this area before, I mean he was Stage 4 before he was even diagnosed. I know that it’s not my fault but should I have seen something?  Friends and family will react to my questions, but they’re honest ones and it is how I feel.  I will do the best that I possibly can, but what if it is not enough?  This is not a “poor me” blog, it is a reflection of my state of mind.  I feel a tremendous responsibility. I take nothing for granted anymore, I can’t afford to.  But I am afraid.  I know that fear is destructive but to deny that fear is foolish.

My saving grace today was a site I found on line that made me remarkably normal, although it’s small comfort to know that experiencing this range of emotions makes me “normal” when I feel like I am broken.  It is, however, a great resource which I will continue to reference when in doubt.  There are answers and there are suggestions, but there are no one size fits all solutions.

Fear is the Enemy

So no doubt about it, this was a tough day.  There was no break, no relief over the course of the day for my husband.  He felt lousy, was light-headed, nauseous and naturally, non-communicative.  He didn’t want to talk about anything, no questions, didn’t want the chatter of people around.  It was like he was almost in a suspended state.  The nurse came and went, but we, rather I had a chance to ask some questions.  This was almost a week after his second chemo treatment – shouldn’t he be feeling better?  She had taken all his vitals and done her assessment and basically said, here’s the thing – with this disease you don’t know.  This looks to be all related to his chemo and his thrush and so, likely, this will be his worst day.  But, and it was a big but, the thrush is a nasty thing – it makes taste go off and as a result it can making eating and drinking enough a bit of a challenge, which means tomorrow could be more of the same.  So she will be back in the morning to see how he is doing.  If he hasn’t improved then we call oncology and have them weigh in.

From my perspective as caregiver, this day was one of my hardest.  He was shutting down and unable or unwilling to answer my questions.  Didn’t care if he ate or didn’t eat, didn’t really want to drink.  It was hard to get him to take his pills.  It all adds up to a giant stress and causes me high anxiety – does it mean that something else is going wrong?  There always is some sort of constant fear gnawing away inside of me.  As I tuck him in for the night I see how fragile he has become, its a painful indication of the toil this disease has already taken on him, and we are only at the beginning of the battle.  I am acutely aware of how quickly happiness can be snatched away from me.  Fear is the worst thing; it’s faceless, voiceless and insidious, it creeps into your soul and steals away your joy.  I have to remind myself that fear is the biggest hurdle to get over and it will be that way every day while this battle is on.