Hanging On To The Pieces

Yesterday I swam in the lake.  I’ve been told Whitlinghamthat this was off-limits and an infection risk before a date several weeks in the future, but weighed against the food for my soul this swim provided, it was very, very worth it!  The weed had been cut, the swans were proudly escorting their massive brood, and the water was so still and so delicious.  I was the fifth swimmer off the deck and it was early enough that I got to cherish my own space without being swum over by some competitive big boy training for some major event.

The thing about exercise is it makes me feel like a normal person, someone with a future.

It was certainly an attempt to shake off some of the throw away comments made this week, by medics that keep bouncing around my head.

This week I was referred to palliative care.  Apparently people who are referred early come to terms with what is to come better than those who do not receive such support.  The problem for me is I live alone, well, just me and my beautiful boys, so there is no one to share these words with when they wake you at 3.00 am.  I also had to go to the Hospice this week.  Children too who have intervention and support before and after a parents death do better and adapt more functionally.  So I had a second appointment at the Hospice to this end with the backup from a beautiful supportive girlfriend who has witnessed my emotional incontinence on more than one occasion.  I am lucky enough to be able to share anything with her.  Her bravery astonishes me.  Not so many years ago she lost her best friend from childhood to a form of cancer leaving behind younger children behind than mine.  Why would she want to get close to my little family’s big drama?

It’s the throw away, thoughtless, comments that medics make which do so much harm.  I am stage 4, but as yet this metastasis is just in my sternum.  So it’s in my bones, but only just!  I have a mountain of books, some read, some still in the to-read pile, but many are written by people who have beaten the odds by a mile.  Their positivity is what I am trying to hang onto to find hope.  The average prognosis for someone in my situation is 26 months, but that is not nearly long enough to do all the things I need and want to do.

I am beginning to understand why at the more alternative places I have turned to for support there is hope and why upon walking into hospital I appear to be surrounded by round-shouldered, passive accepting patients with less of a twinkle in their eye.

The appointment for my boys at the hospice came on to a subject and I was asked “Is that in your yellow folder?”  What is a yellow folder I questioned in return?  “Your death plan,” came the answer.  Death plan!  Death plan?  I’m 49 with 2 children of 11 and 13! They have a feeble support network of family and I need to be here for a while yet to fight their corner.  I laughed and said I was not there yet, but it was not funny.  Not funny at all.  Her words have been bouncing in my head ever since, despite my best efforts to push them away.  I am post chemo by just two weeks and the fatigue from this seems to be quite crushing.  I am struggling to keep house, and exercise has to be prioritized at the expense of something practical and mundane; I wish to and get out to see friends;  these coping strategies, to dilute her words, are a stretch.

Another nurse, at the beginning of chemo, rang my home.  I still haven’t quite worked out the purpose of her call.  I was on a mission getting things straight, and the fridge filled ready to look after 2 boys (without too much cause to reverse the carer/child role).  She proceeded to tell me that no, I wouldn’t manage my placement attached to my degree.  Hadn’t I thought about the fatigue, the infection risk and the rigours of placement?  Yes, actually I have, this is my second round of chemo, so chances are I have a greater insight than the nurse on the end of the phone!  She continued telling me all the things I wouldn’t be able to do, but then wound the conversation up, with “stay positive,” a remark crass enough to enrage any self-respecting cancer patient into a physically violent response!  Her final advice was to tell me that “you must live your life”.  Something I thought I was doing before she rudely interrupted, and left me wanting to rock while sat on the floor.

A nurse the week before assured me that my bloods were ok, and that in no way did I need a blood transfusion – thanks for that, until that point I had never considered that I might!

Or back at the Hospice again to talk about support for my children, when asked, in that slightly soft singy songy voice, with head tilted, “Tell me about your cancer journey?”, when it was repeated back (I believe this is to indicate that you are understood and to show empathy) that “You are not in pain, yet.”  Why then did that YET hang in the silence forever?

They, the staff who are doing their best to support people like me, will tell us that we have to look on the bright side, fight it and (give me strength) stay positive, so why then wind up a conversation with, “Ok, we shall see you again in September, unless your symptoms change” and not “See you in September, but you have my contact details?”

Is it just me, or does the emphasis seem to be, just wait, this is just beginning and there is worse to come?  I am trying so very hard to live in the present, to live with hope, and to live well.  I think these thoughtless words could knock the stuffing out of some of the strongest people and maybe contribute to people living to their prognosis?

Kokkinokastro-BeachAnyway, I am truly grateful to have negotiated a needle free, counsel free summer and the opportunity to live like a normal (well, my normal) mum of two and fill the next few weeks with as much laughter and mischief as is possible.  I intend to feed my soul with as many early morning swims on empty beaches, embarrassment for and laughter with my boys, and maybe even a little solo trip to somewhere where they speak a different language but eat great food and feel the sun on my salty skin and no one knows my story, just for a few days.

………but first it’s time to watch the swallows, or are they swifts, feed from the middle of the lake xx

Barn Swallow (Hirundo rustica) flight sequence

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