Love your Loss - and the love of PUBS

Amazing Manor Mum's meet Drag Queens in The Regency Tavern + notes on being really LISTENED to...

Manor Mums Out to Dinner in Brighton

"Wild Geese" by Mary Oliver

You do not have to be good.

You do not have to walk on your knees 

for a hundred miles through the desert, repenting.

You only have to let the soft animal of your body

  love what it loves.                         

Tell me about despair, yours, and I will tell you mine.

Meanwhile the world goes on.

Meanwhile the sun and the clear pebbles of the rain

are moving across the landscapes,

over the prairies and the deep trees,

the mountains and the rivers.

Meanwhile the wild geese, high in the clean blue air,

are heading home again.

Whoever you are, no matter how lonely,

the world offers itself to your imagination,

calls to you like the wild geese, harsh and exciting—

over and over announcing your place

in the family of things.

I love this poem. It puts me in my place, pulls me down into my body, out of my head. Sometimes you read a poem and it’s energising,  like a lightning bolt yet also somehow restful like a long and deep sleep all at once igniting you, breath taking, breath giving, thought provoking, suddenly everything is okay; you have found some instruction for how to live, you are fine as you are, belonging to everything and everything belongs to you. That’s how I feel reading Mary Oliver. I only have one collection of hers called A Thousand Mornings. Mornings are tricky in times of loss. You feel confused, not sure of how to start the day. The smallest of moments overwhelm. Rituals are good here. Mist house plants, kettle on, toast down, step out into the garden for a deep breath to get a sense of the waking world, write a list. I love lists. I often eat my toast just out of habit and not because I am hungry. 

I have a son. I do. This is my son, James Edwards. Forever Age Six, (as they say in grief)

I do have a son. It’s just that he’s not alive in the way you and I understand what it is to be alive. The bond between us is unbreakable. And that’s how I know that beyond our limited reach there is another far richer dimension, another realm I believe. It’s unrecognisable and unimaginable for us mere humans trapped in our bodies to comprehend but I know it’s there.

When I get together in person or on Zoom, with my ‘Manor Mums’, (the incredible mums I met on the grief retreat in a manor house in Oxford) we talk, smiling through rolling tears, about how our children all have each other now, how they are friends and are having the time of their lives together. The older ones are teaching the younger ones. Spirits united. Life is a pre-drawn map, I have to believe that. What-ifs are wasted energy. I tell myself we were all destined to meet; our children destined to be together. This is how it is. There is no alternative.

Some of us recently met in Brighton. What a place, full of people intent on having fun. We had a wild weekend of wine-ing, crying and laughing good and proper. Then there were the outrageous drag queen acts so good we returned on our second night - one of them dared to make fun of us, asking - who we are and what are we doing together in Brighton? One brave mum spoke up - ‘I’ll have to whisper it in your ear,’ she said. So he came to our table, grinning - the crowd silent with anticipation - she leaned over to his ear… I wondered what the hell she was going to say to him??? Sitting next to her, I heard what she said: ‘We are bereaved mums who have lost our only child.’ He walked away, still grinning, expression unchanged but his mind exploding a little. He went back to the stage in the spotlight, wiping his glistening forehead, and announced to a packed pub that we were Forty Year Old Virgins. We all howled with laughter of course. I was so impressed that he’d managed to come up with that in a split second! In my drunken state part of me wanted to grab the microphone and say, ‘Actually we are…’ but, no, you don’t want to bring down the mood. It’s our norm but it’s just too much for many. Still though I couldn’t help wanting everyone in the room to know what strength it took for us to be there. And they must have been wondering the truth too? Oh—unless they believed him! I hope I soon return to Brighton and The Regency Tavern - it felt like the friendliest place, every road seemed to lead either to another great pub or to the sound of the sea rushing over pebbles.

Occasionally and only for a second when I am with my bereaved mums, I sit there, looking at these women, and no doubt they get this too, this wave of disbelief - I’m thinking - I don’t belong - I’m not part of this? Really? This isn’t my life? But it is and it’s a head fuck. Needless to say.

When you have someone in your life, by your side, who inspires you, energises you with ideas pouring out of their ambitious young mind, someone who you are attached to by an invisible cord, who is a real bright being, breathing deep, skin glowing, eyes twinkling, someone who looks at you and says, ‘Mummy, I love you,’ and this Someone is So Alive, growing before your eyes; with features evolving, big teeth coming, shoe size changing, shoulders broadening, when you have all of that it really is impossible to accept that they are gone; that they are now nothing but a memory. IMPOSSIBLE. All of this being is tightly packed in that little living thing and you’re addicted to them and when you kiss them, you take a big sniff, you can’t help it and that smell fills you up in a way that nothing else can fill you. I do not believe in heaven or hell. I do not believe in God. I believe in Mother Nature. I believe in spirits made of energy because energy never dies. I don’t believe he exists in his original physical form. Why would he need that old costume when he is a free spirit?

The photograph of James (above) was taken in a lovely country inn just outside Bristol. Think it was called The Battleaxe Arms. After radiotherapy, every morning for six weeks, we left the hospital and gave James his cannabis oil. Sometimes he was in his pram.  We would go for stroll around the city until we were too tired and had to return to our accommodation. He was always a bit grumpy at this stage of the morning, general anaesthetic did not agree with him. The hospital staff sadly did not have the resources to let him sleep it off, forced to wake him up,  by gently tickling his face, moving us on. This was not their fault but made life difficult. He was trapped somewhere between a very deep sleep and noisy hospital ward. (Fuck, he was miserable, fuck, it was awful) Anyway hour after giving him the cannabis he began to relax, eyes growing heavy and eventually nodding off.  We had weekends off so we gave him the oil mid morning before driving out of the city, in search of refuge amongst trees, fields, and pubs away from Christmas shoppers. We often sat in car parks in the middle of nowhere. He would wake hungry, and we’d hurry into a pub and watch him devour his favourite - fish and chips. In the photo you can see he is heavy-eyed, enjoying his pudding.

So - as discussed in my previous newsletter - we had the interview on Zoom with Matt Hughes from Medcan and Sarah Sinclair from Cannabis Health News. It felt like it was one of the most important things we have ever done. They listened to our story, patiently, so generously, for an hour and a half. On the 28th October, Sarah forwarded me her draft for our story. It was hard reading, suddenly from this new perspective of my life I wept. It was like I was reading about other people. Was this really us? Really our story? Did we do THIS? It seemed unbelievable, suddenly seeing it from the outside.

Matt asked us to start from the beginning, the first symptoms, the diagnosis, prognosis, and when we first decided to try cannabis. We let each other talk, we held hands tightly. In my other hand I held a photograph of James in the shot the whole time.  We were surprised by some details that each other had forgotten, we sometimes contradicted each other. It was the story of four years of hell and resilience and love and insane amounts of truly incredible hope. I feared that Matt and Sarah were getting lost in our jumbled outpouring. I apologised. They reassured us. And it didn’t matter; this was our story, this was what we did. And they listened. Really listened. There were such proud moments, I could hear it in our voices, hopeful, bouncy, triumphant words, racing along, Yes, Yes, this is what we did! - Simon the seed researcher, buyer, tent assembler, timer of lights, seed sower, grower, oil maker, and me, the fuck off cancer-Cannabis Hot Chocolate maker, cannabis disguiser! At night when James was asleep we used oral syringes to fill capsules with our oil, Simon filling them while I closed them. We felt like pioneers, mountaineers.

Towards the end it got sad. I felt for them; it must have been hard to hear, we were both crying, we didn’t know why he’d relapsed, after nearly three years of stable MRI scans, why was it growing again? We’d climbed a mountain and were being thrown off the top with nothing but eye watering electric bills. We will never know. This we must accept. Just like we will never know why it started growing in the first place.  This is where we are. This is our destiny. Trying to help others. 

The final question from Sarah:

‘Is there anything you wish you’d done differently?’

I didn’t need time to think about this. Straightaway I said, ‘I wish that we’d given him more of the oil. And Simon agreed with me. But then, I admitted - how was this sustainable? Was he to be under the influence of THC for the rest of his life, running from the intruder in his brain? If the cannabis was helping how could we carry on like this, in secret? If it was being used in the hospital, it might have been different, organised, supervised, advised. We are not the only ones. There are parents out there doing this, right now, hiding, in secret, scared but with no choice but to break the law and give cannabis a try. They are alone and scared and winging it. 

I am so grateful to them for this opportunity. They were, in their words, utterly astounded by our bravery. It took us about three days to recover from the interview, dragging it all out for an airing left us a bit shaken, having to relive it all, telling the story from the very beginning. But we also felt empowered and energised by our truth. It was therapeutic for us, another leg of the journey of processing it all.

Some people don't believe in therapy; don’t believe that talking about old stuff helps. But I believe unprocessed contents become unconscious drivers, driving us blindly down bumpy roads. It is painful on the way out, like scraping scar tissue out of an old wound. But you can’t leave it inside and it's how you feel afterwards that counts; it’s how your body moves when you leave the session, walking away with space in your head, ease in your joints, fresh blood in your muscles. The money you spend on therapy will be the best money you ever spend. We find money for a new tyre on the car, a new part for the boiler yet treat our bodies like storage containers.

We said our goodbyes, left Zoom, shut the laptop and drove of course straight to the nearest pub where we sat in safety like we used to in the pub around the corner from the hospital in Bristol. The Colston Arms. I imagined that Matt and Sarah needed a stiff drink after that. Or is that just our coping mechanism? Us and billions of others who love that feeling of taking the sting out of the day because life is bloody hard work.   The Colston was our safe house, our halfway home, on that ridiculously steep St Michael’s Hill on the way back to Sam’s House, our CLIC Sargent (Young lives Vs Cancer) accommodation. The pub always had homemade sausage rolls on the bar just out of the oven at 11.45 am for our arrival fresh from radiotherapy. It really was not so much about the alcohol. Of course a little beer helps but it was a place of safety; not the oncology ward full of poorly children, not Sam’s House also full of poorly children and broken parents, not shops selling Christmas. Those pubs in Bristol were somewhere to be normal, feel cosy - proper old pubs, no fruit machines or loud music, men drinking alone, and us - a little family of three in the corner, James with a smile from ear to ear because his parents were finally at ease, doing some colouring in, in a warmth and dim lighting without bleeping machines and oral syringes.

Christmas was coming. Bristol was putting on lights and dressing windows with baubles and we had a two year old to entertain from late morning onwards. It was a long day in a city. Thank you PUBS, Oh how we love you!. And thank you to all of you who contributed to our Go Fund Me page for that dark period. You cannot know just how much of difference you made to us.

Looking back - giving our son cannabis - was a very brave thing to do but it didn’t feel brave at the time. It felt like our only option. But to be acknowledged like this means a lot; to hear this, to feel we did something good, that we did our best, it’s like a jump start for a broken down heart. Hopefully our story will inspire others and help towards making a change, making life, even if just for one child, one parent, a little better. If our story can give some hope and reduce some suffering, then we will have done a good thing. That is all we can do now, try to make good things come out of this devastation. Our story has now been published in Cannabis Health on Monday 21st November. I have shared it on social media and have received many incredible messages of support and love. This means the world - to share, to not be alone, and hopefully to inspire. Last night, the day of publication, after I shared it, I suddenly felt a moment of panic, going public… ‘What have we done?’ I said to Simon. He smiled, looking totally relaxed, ‘I don’t care,’ he said, ‘I think it’s brilliant.’ And I said neither do I.  We have no doubt whatsoever that we did our best and have no regrets. 

Grieving is like living in suspense. It’s another realm where I am drifting between the living and the dead, led by passions, living for James, because of James, but also trying all day to catch a glimpse of what death really is???? and always, always feeling confused,looking for answers in the flight of a magpie or the sound of the lapping shore, the wide stretching arc of a rainbow, I am always half here, half there,  day dreaming of what a special existence he must be living now, escaped from a broken body, free in the wilderness. This is where I am.  I can’t see it but I am closer than some. And I am okay with that. 

All this may be miserable to you, shocking, even depressing, (but surely no more depressing than turning on the news) or just plain uncomfortable,  but it’s none of these things to me. It’s my norm, my everyday. It’s tiring, like going to work and never leaving, but living in fear of pain is also tiring. If readers were to take one thing from reading my newsletter then I hope it is to live less fearfully – be daring, go on an adventure. Put the what ifs to one side and just do the thing you’ve wanted to do. That’s what James would do.

Lunch in Beerd, Beer and Pizza place round the corner from the hospital. A post-radiotherapy cannabis oil-infused lunch. He liked tuna on pizza. They didn’t do tuna at Beerd but always let us bring in our own tin and they put it on for him! (There are lovely people everywhere.)