Monday 27 June 2022

Letting the light in.

 My heart, which is so full to overflowing, has often been solaced and refreshed by music when sick and weary.


- Martin Luther -



            Celebrating my daughters Race for Life-a jewel to treasure this week! 


I read this quote this week and it made me pause. There is no doubt that music has been an important part of my life. I’m a singer songwriter fan and also very much enjoy those whose voices are the instrument too, not necessarily together as that can be a hard ask! I notice, however, when I’m most stressed and anxious because of life and it’s travails I can’t listen in the same way. Somehow I takes up too much room in my head. Perhaps my brain is too overwhelmed by making sense of things or just getting through each day. 

At other times it’s been reading, my usual solace, that has left me. I have found I can’t concentrate or as soon as I dip my eyes I’m asleep but not now thankfully. I’m enjoying every form of reading but I need to be selective. I don’t do sad just now, nor dark, just escapism or thoughtful well written books are as much as I seek. And I do love an audible book, a story in my head to take me away to someone else’s life and place is a gift, especially on the harder days of chemotherapy. 

Mostly when I’m on the ward, I have the AirPods ( I treated myself to them at the start of treatment- wise decision) in place, some banal novel in my ear and my eyes closed. Otherwise I’m too open to others pain and it’s hard to witness. It’s the emotional pain really and that maybe my projection but mostly I sense that I feel it in them too. And it’s hard not to hear the stories. See the veins give in and fight back against the cannulation. The defeat as their story doesn’t unfold as planned, a scan showing treatment not working, a blood test requiring attention. A slow giving in to the cancer ruling your life and the gradual acceptance of it. Your own life reflected back in theirs, maybe differently but at its core we share that connection and it feels visceral. 

I wonder for the nurses who do this work day in, day out. Their kindness soothes us, their smiles and quiet competence a support to a world that feels unsafe in so many other ways. They are getting used to me now, pitching up in the wheelchair. We know where the real accessible toilet is after a bad start and I know the rhythm of the day and what to expect. The summer is moving past slowly and I’ve had to give it to just making it about getting though the treatment. Tentative plans for trips are now cancelled until later. Not only am I tired and vulnerable but covid again is everywhere. 


For many people I know they are infected with it for the first time and really don’t feel great. Thankfully they also so far have recovered over time. Honestly it feels surreal, we talk of life being back to normal but almost everyone I know locally has covid. It hasn’t gone away but masks are rare and any sense of shared protection has gone. It feels a lonely place to be. I do understand wanting life to go back to normal but it’s like a mass denial, supported by governments who have given up trying to have any semblance of control. Thankfully vaccines have helped and we aren’t back in those early days but for some of us the fear remains raw. And omnipresent. 


So I have listened to some music recently but it’s been Leonard Cohen! Does that reflect my state of mind? I some ways it does but that means a reflective place and there is no one like him for getting to the heart of matters. The Anthem is one I’ve often quoted and not only the words but the anthemic nature of the song brings a special  comfort in these difficult times in my world and the wider world too. ‘There is a crack in everything, it’s how the light gets in’. So here I am getting through, trying to let the light in and enjoying the things to celebrate, however small they are. 

Monday 13 June 2022

Find the jewels

 


Find the jewels 


Find the jewels she said

Sometimes they are buried 

I thought. And I’ve little energy

for hunting. 


At times I find myself 

storing hurts instead.

A missed opportunity, 

a song unheard.


Too many moments lost

in what’s not happened 

trying not to long for

what has passed. 


But the jewels are there 

often in full view.

A new bird finding the feeder. 

The dogs joy at our homecoming.


And for this afternoon

The gentle snore of the cat

permeating the quiet afternoon 

light, creating a soothing rhythm.


Wednesday 8 June 2022

It’s a cat and dogs life….

 

A week off chemotherapy helped me have space to fit in a short trip to family in the south Highlands of Scotland. As soon as you arrive the freshness of the air starts to soothe. It’s so valuable to switch off from the tyranny of blood tests, treatment, assessment, endless medication and so on. 




For a few days it was beautiful scenery and beautiful people. The pain was-is-still breaking through but less so. I can feel and see the concern on others when I struggle but I can no longer protect them from my worst times as they are too evident. My drugs get increased again and slowly I’ve improved a little. The steroid injection has started to kick in too. My body is less guarded and I’m relaxing a little more. So I’m sleeping-a lot! 

The other day after a busy morning on a webinar I spoke at, I snuck upstairs to change into a soft denim look jumpsuit ( like a posh onesie tbh). Getting changed is always a challenge so I rewarded myself with a wee lie down. Several hours later I awakened with a jumpsuit on inside out. I’m like the dormouse in Alice in Wonderland!  

But I managed to escape the jubilee celebrations largely so that was a win in my book. I’ve lived my whole life with this Queen as our head of state and like many in the UK I have an admiration for her commitment. But for me that’s about her. I now feel the need for a more effective head of state and I have great concern that whilst we have a hereditary monarchy we will never address the outrageous inequalities that are worsening in our country. The Platimun celebrations sit in stark contrast with the many who can’t afford to feed, clothe and house themselves or their families. When the government announced that we are to return to imperial measures I had to agree with our first ministers quote  ‘those whom the gods seek to destroy they first make utterly ridiculous’. Poverty isn’t inevitable in a rich country such as the UK. I’m so distressed by what I see happening around us. 

But one of the effects of cancer treatment is it by necessity has taken me inwards. I have little energy for external issues, I’m just getting through each day trying to balance pain relief, sleep, having good food and having some social life to keep me on the right side of sanity. It feels a selfish life but it’s all I’ve got for the moment. Our trip north taught me that the hoped for trip to Ireland in August was just not realistic. I’m sadly accepting that but hoping it’s just postponed. 

So life is at a slow careful pace just now. And that has to be enough. I’m embracing our cat and dogs approach to life. There’s much to learn from them. And from the simple joy of our Grandson chasing bubbles. 






The space between here and where?

  I am thinking about how to capture this space between life and death.     But Is it fair to call it that? After all in this space I’ve lau...