The Journey Continues (the cancer diary)

For those that are interested, here it is. Life after Chemo, the next stage.

The Journey Continues….

Wednesday 24th August 2016

Chemo ended on May 27th, it’s was thirty weeks of hell on earth.

With Chemo finished, my body slowly returned to some kind of normal. I was smiling again, going for longer walks as my strength returned. My hair started to grow, I was almost human.  I was returning from another world, one I never wanted to visit again. 

After a month or so I was able to get back to the things that gave me joy. We started doing stuff I hadn’t done in ages. We went to a couple of live music gigs, friends BBQ’s, meeting up for lunch. It was wonderful.  Spending time on the coastal walks and cliff tops around us.  There’s a great walk between Saw Mill Cove and Hope Cove in the South Hams.  Just sitting looking at the sea from high up on the cliffs breathed new life into me. We were aware that all was not over, but this was a special time for Lesley and me.

I’d been running a Poetry/Prose reading night called The Word at a local watering hole called The China House. Chemo had stopped me in my tracks. A couple of friends had taken over the running of it, with me just turning up when I could. Most of the writers and readers know me well anyway, and supported it while I was ‘with the Fairies’. I was able to start participating again, read a couple of old pieces, I hadn’t written anything worth a dam for a while. When I stood up and said “Hello, and welcome to The Word” everyone clapped and cheered me. It was good to be back. Soon I was writing again, and had a poem in the local paper. I must be on the way back.

My Granddaughter was growing fast; she became the focus of my attention. Her smile could light up my darkest places, and she called me Granddad…it didn’t get any better than that. We would take her out for visits to the parks around us, up onto Plymouth Hoe; I think she enjoyed it as much as us.

We had a couple of ‘away day’ adventures with some good friends.  Six of us caught a train to St Ives, my favourite Cornish destination. Had a great day out, with a long wine soaked lunch over- looking the sea, we filled it with great stories and laughter. These are the days that turn into memories; and last forever.

We did the same again, this time to a place near Exeter called Topsham. It’s on the River Exe estuary, a beautiful little place I remembered from my past. A couple of waterside pubs, along with some great Antique shops for the girls.  None of us had caught trains for years, quite a novelty. Pick your days and it’s remarkably cheap; and no drink and drive problems.

All of this took my mind away from the fact, until we had the results of my follow up scan, nothing was certain. It’s the waiting that builds the stress, you try and keep it at bay, but it’s always there; a dark cloud on your horizon. The scan took place a couple of months after my last infusion, in order to give it time to work through. As we got closer to results day I started to get edgy, I was back in the nightmare again.

I knew Chemo for me was not a cure, just another holding devise. Keep the cancer from spreading for a little longer. The longer the better, as I always hope they will come up with a cure…well that’s my plan anyway.

Living in the Now

Sat in the waiting room.

It’s dark in here,

stress in every corner,

pulling at your sleeve.

Telling stories…

Make-believe

dreams

of bright tomorrows,

for those

who play the game.

Sitting alone….yet not.

Surrounded

by memories,

cold ashes of past lives.

I can’t stay here,

tied to the past,

looking for a future.

A life that used to be.

I’m back now,

in a world I understand.

For me

there is no past,

no future,

only the now.

I’m living in the now.

My appointment date came through for Wednesday 10th of August, Lesley got the day off work and we braced ourselves for the news. I’d been feeling good; I knew this could just be the after effects of not having Chemo, never the less… I was feeling good.  All the dog and Granddaughter walks had done the job; I was fitter both physically and mentally.

In spite of my new found strength, arriving on the day I was a mess. Lack of sleep the night before, cancer dreams running riot. I tried not to show it, but I’m sure Lesley knew. Oncology was packed, we found a seat, and eventually we were called. It had been a long wait, at least two hours late. Stress for all of us in the waiting room. It’s not the doctor’s fault, there are just not enough of them… and too many of us. We all want to be given enough time to talk, get the information we need to carry on. Made to feel we count, that our lives matter.

Looking at this from another perspective, what must it be like dealing with cancer patients every day? Okay when the news is good, not so much when its bad news. Not sure I would last a day sitting where my consultant sits. Huge respect for her and the team.

My consultant, as I’ve said before, is more like a friend I meet for coffee; and a catch up with. None the less, what she tells me on these occasions is not your normal chit-chat; although after ten years, there is a bit of that ‘banter’ thing going on. HaHa!

After the pleasantries we got down to business. The Chemo had done its job and the cancer had been halted. My PSA count had also dropped again, this was all good news…I sensed this was not the end of it; and I was right.

The next revelation placed us back in the nightmare, the scan had shown a trace of cancer on my liver….Bugger.  The cancer had found a new place to call home. It was not the news we wanted or expected. I thought with it being in the Peritoneum, it was bad enough, now there was something else to worry about.

The last dream out of Here.

Did you see me?

Falling through the cracks

of yesterday’s dreams,

the walls of illusion

broken down.

I woke

to the sound of wings,

churchyard birds

sat waiting in trees,

murmuring of a time to come.

I poured wine

on my disillusionments;

to keep

bad thoughts at bay.

Every time I think I’ve got a handle on it, there’s a game changer. Prostate first, then on to my stomach, now my liver. Needless to say…. there was a long conversation as to where we went next.

As always I asked ‘were there options’, apparently not many. There were new ‘blocker pills’ to try. Similar to my last ones, only stronger, they would hold the cancer for a while. Sadly they too would eventually stop working, it may mean more Chemo. I would need to think about that. There are always new drugs coming onto the market, I had to hope one of them would suit me.

It was a knock back for sure, I’d had a few over the years; should be used to it. The thing is, this is not losing a job or the sale of a house, this is my life were talking about. Something I and my family were quite passionate about hanging onto.  As always I will deal with it the only way I know how…face on and bloody minded. 

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