My healing space

08/09/2022

Thank you for your long and humble Service. Rest in Eternal Peace and may you be with your Prince once again ❤️

24/07/2021

Yesterday the Butterfly team were presented to Princess Anne and received our Queens Award for Voluntary Service (from last year). An amazing day and such a joy to all finally get together. 💜 Sea of purple uniforms 💜

03/02/2021

Could you sit alongside someone at the end of their life? We really need more Butterfly Volunteers 🙏

Urgent appeal for Butterfly volunteers

Our award-winning Butterfly Volunteer Service is made up of specially-trained volunteers who support patients at the end of their life, as well as their families.

We are looking for volunteers who could offer one-to-one support, comfort and companionship to patients who otherwise might face dying alone at Lister Hospital in Stevenage.

Do you have a few hours a week to spare? Do you have empathy and compassion to help make a difference to this charity-funded service? If so, we would love to hear from you.

Please contact Angela Fenn, Butterfly service co-ordinator on 07825 072142 or email butterfly.enh-tr@nhs.net.

Thank you. 🦋

Please note, that due to the pandemic, all applicants will need to complete the East and North Hertfordshire NHS Trust risk assessment form to ensure you are considered low risk.

30/12/2020

It's been such a long time since I've written and this is why I've not felt able to.......

The call came as I was preparing to leave my patient. It had been difficult to sit alongside him, the terminal agitation taking hold of his body as he threw off covers and conversed with his dead sibling. A nurse had even joined me, perhaps all too aware of how hard this particular vigil was.

These phone-calls, I imagine, rarely come at a moment of convenience or when we're ready for them. I'd only just left him that morning. We'd met at his to sort out medication. He'd responded so well to the steroids that we were confident, worse still, hopeful that it was going to be ok. We'd do whatever it took. But now apparently it wasn't going to be ok.

I raced through the corridors of the hospital, grateful that I'd parked in the multi storey and not off-site. I don't remember much of the drive home. My eyes fill now, heart in my mouth and the wretchedness coursing through my body as I remember the feelings, tears pouring.

I do remember praying, bargaining for just enough time to see him. Asking for precious time to say my goodbyes and to cuddle him. My handsome horse ❤️

Earlier in the summer his mum had called to gently suggest we all consider his health and whether it was fair to him to take him through another winter. You'd think given my ability to embrace death and dying that I'd have handled this well. Instead every fibre of my being was screaming "No! not Bones, not my horse".

He was 28 and had been lame the previous 2 winters, the last one ending with mud fever for good measure. The winters were wet and muddy and they were taking their toll on him. He would only live out (with a field shelter), detested rugs which he'd remove and artfully drape over fence posts and very much knew his own mind and wrote his own rules.

We met at the farm the three of us - his mums who have loved and cared for him for many years. I imagined we'd be talking about preparing for the winter and managing grazing through the summer but death was still on the table.

The vet came and gave him a full check up. He was good for his age but she knew how hard he'd found the previous winter and there would be no judgement if we chose to give him the best summer ever and "do the kind thing".

I took off my rose tinted glasses then and began to really see him, see him where he was at and not where I wanted him to be. He was undeniably tired. You could see it as he walked and yet he always made an effort when any of us arrived. His little whinny one of my favourite sounds. Sometimes though you could get up to his shelter without him realising and catch him sleeping. This was new, endearing but a change.

It was a long summer for us, many days spent at the farm, far longer than we'd usually be there. A sanctuary even more so given the Covid situation. We didn't want to miss precious time with him and as that time rolled on the decision was made that we'd do whatever it took to keep going.

You see we'd asked him to give us a sign. Begged him to tell us somehow that he'd had enough and wanted to go, to join his little friend Tricky in the great fields beyond. Then just as summer was ending he became unwell with a fever and collapsed.

For days we were at the farm administering medicine 4 times a day, feeding him by hand, making sure he had enough to drink. We talked to him, held him, stroked him and cared for him as you would any unwell person. And we questioned, was this the sign we'd been waiting for?

In denial, we continued to try everything and yet I began to feel a gentle creeping acceptance. I think I felt it was time to let go before his other mums. I felt guilty when we talked things over, as though I were crushing their hopes.

That phone call did signal the end of his life. He was no longer responding to treatment. We were all there, me still in my Butterfly uniform. His mums, past and present together, with him. It was beautiful and it was heart breaking. We stayed cuddling and stroking his dead body for hours until he was collected. His actual mum tucking his tail in as we said our final goodbyes.

Bones was a year old when Nikki got him. He had been rescued as an 8 week old foal, together with his mum, but tragically she had died not longer after. During the 27 years she owned him, Nikki shared him in a unique set up. When I joined originally there were 5 of us all sharing his care. We each had a day(s) when he was our horse. We were to think of him as ours.

Nikki, thank you for your generosity of heart. For a motherless foal whose life you filled with loving mums, and for allowing me to share his life for over 10 years ❤️ I'd never have had a horse without you. Thank you xx

12/07/2020

I returned to the hospital 6 weeks ago and have been sitting with patients at the end of their life in my regular weekly Butterfly shift. As usual. That was my 'normal' and it still is!

I didn't mean to return, but it's not that I've not wanted to. When lockdown came I desperately wanted to continue sitting alongside patients. I felt now, more than ever, the compassionate support and care we provide is vital. It's the very reason the service was set up - to stop people dying alone.

However, my husband & children's voices were clear, my youngest child in particular. My parents have long given up the notion of telling me what to do, but both quietly allowed their expressions of "please don't go in" to gently permeate.

I also have asthma (thankfully mild now). Although I wanted to be in, something that really hit home was the impact my need to be doing something useful would have on others, should I get the virus. I couldn't bare the thought of being an additional burden to our precious NHS.

As I say, my first week 'just happened'. I went in for the Queen's Award announcement. There was a long patient list, I was in uniform and it seemed as good a time as any to learn the PPE routines.

The reason I haven't posted sooner is because I've found it hard. There were no people. There were few, if any loved ones allowed a precious visit, and only to patients at the end of their life who did not have Covid-19.

A hospital is a reflection of its community and embraces and intertwines with it. Yes, it is full of Drs, nurses, specialists in many fields, pharmacists, cleaners, porters to name but a few. But it is also made up of its patients, their friends and families, fundraisers and literally 100s of volunteers.

Thankfully over the past few weeks I've settled into this new way of being. For me, sitting alongside a dying patient is mostly the same. Well the caring and honouring of another's precious life as it ebbs and flows to its ultimate destination, is. The mask, gloves and apron are now just tools that allow me to be there. And I'm grateful. Grateful to be doing what I love 💜

02/06/2020

Feeling quite overwhelmed and so proud that the Butterfly team have been given such an honour. We quietly sit by the bedside offering care and support - its just what we do. To be recognised with this Award for such a seemingly simple act of care and compassion is amazing. Thank you. I hope that every hospital will be inspired to create something similar.

08/05/2020

My week has been full of wonderful and interesting experiences. I have embraced the Goddess Rhiannon at a Beltane Ceremony on Zoom, dressed up as Adam Ant for an 80's pop star Zoom with fellow deathwalkers and the most poignant experience of all was attending a funeral.

I've given reiki a few times over the last couple of years and had a simple videocall with loved ones as the end neared. Really I did little, this post is not about me. It is simply an opportunity to share what has become an unknown in these strange times. To offer a gentle view.

I wasn't sure what to wear for a funeral I'd be watching on my laptop, after all no-one would see me. In the end I felt I needed to honour the ceremony and ritual that I would normally observe, and so I put on my black dress. I sat formally at the dining table and entered the code and password to give me access.

And so the chapel of rest appeared before me. Empty for now, but images of him being shown on two screens either side of where the coffin would rest. Him as a young man, with his love, with hobbies, with friends and most of all with his family. He was blessed indeed. And my tears were flowing. I hadn't known him well but the privilege of this door into his life wasn't lost on me.

The music changed and his coffin was carried in gently. There were three pallbearers rather than the usual six and they respectfully placed his coffin. The usual bows and nods of respect were given and then his family arrived. Largely in solitary singles, but the odd couple who were obviously together in lockdown. They sat widely spaced apart in the few rows visible through the livestream.

The celebrant gave a wonderful talk about him and his life, further embellishing the photos before us on the screens on either side. And then one of his daughters, together with her young son stood and paid homage to her father.

She faltered understandably, the emotion overwhelming her. Tenderly her child reached for her and his love seeming to give her the strength to continue. She read on, sharing her sister's poem and then her own words - the love pouring forth.

There were the usual songs and ceremony as you would hope. The curtains gently drew close around his coffin and the ceremony was complete, save for one last song. The funeral director respectfully passed on his condolences and seemed to reassure the family that it was ok for them to sit and listen to the final song in its entirety if they so chose.

And that final act, where usually people start to head outside, and leave the family to reflect for their last few moments, was one noticeable difference. That and the very obvious lack of cuddles and hugs that would be given normally. I'll admit that was very hard. I wanted to reach through my screen and hug his wife and daughters. The lack of touch was discernible, the lack of love wasn't.

I'll never look at another beanie hat without fond remembrance 💜 ........

Rest in Peace John Collins

(Shared with knowledge and permission from John's family)

02/05/2020

Today I should have been abseiling down the tower block at Lister Hospital with Jenny, one of my fellow Butterflies. I did it last year and absolutely loved it! Jenny said she was utterly terrified and would not join us, despite being there on the day to support and cheer us on.

This year she was toying with the idea and threw out the casual challenge, "I'll do it if you do!" So today we'd both have scaled the building and raised lots of money for the service. We'll just have to wait til next year - 15th May 2021!

Most of the Butterfly team have had to temporarily hang up their wings sadly. A large number of the team are retired and above the Covid19 cut off age of 70 years. Rather frustrating for many of them who are physically fit and in excellent health. Then obviously there are a few of us with underlying health conditions.

I am enormously grateful to the very few members of the team who are still able to go in to the hospital. The Butterfly volunteer service are currently only able to support non-covid19 patients They are taking and relaying messages to patients, connecting them to their loved ones by iPad/tablet and sitting alongside patients in place of visitors as requested. And very occasionally they get the call to sit with a patient at the end of their life and the rest of us love that the service is still able to do what it was set up for.

In the meantime I've been given the task "to keep me busy" of doing the weekly newsletter. Before lockdown we had enjoyed many social gatherings and as a group had really got to know each other. You'll appreciate that as we cover shifts in ones or twos, that it's unusual to all get together regularly. Using a combination of phone calls, email and WhatsApp we're keeping the team connected
....... until that precious day when once again we'll be sitting with patients at the end of their life, and supporting their loved ones where present, to ease any fear around death and dying 💜

17/04/2020

I am not doing anything heroic or noteworthy, I am simply staying at home. I know its value, don't get me wrong, I appreciate I too am a lifesaver.

I was given the opportunity to work from home, what seems like a lifetime ago. It's my part time office job that I enjoy for its difference and connection with colleagues. But in accepting myself as 'vulnerable' because I am asthmatic, I also had to accept that I could no longer go into the Hospice or Hospital. That was hard. I can't tell you how much every bit of me wants to be there offering reiki and vigiling alongside those dying. But I can't.

Like many I'm sure, my feelings have ranged from an incredulous "this isn't real", a delight/horror (delete as applicable) at being home with family and not having to go out to work, gratitude for things we usually take for granted and utter frustration and lack of purpose... and repeat alternately on any given day, probably still in PJs!

Unusually however, I've not felt like talking about death and dying. For me, it somehow feels wrong and insensitive. This is just my personal view and will not be shared by all. This is simply where I am right now.

I don't want to add to the fear around dying. Nor do I want to tell you the wonderful ways you can support your dying loved ones. Because you maybe can't right now. And I certainly don't want to tell you how I can do it better than you. Because I can't.

These are unusual and hard times. The virus permeates everything we do and want to do, and says "no". I am sure there will still be peaceful, calm and gentle deaths and I pray that there are. But the reality for many is that death will be in hospitals, hospices and care homes with incredible, caring and selfless heroes who are doing the best they can under the circumstances.

Thank you to each and every one of them, and to you for staying home 💜

13/02/2020

Grief can be overwhelming, the pain leaving you gasping for air in between sobs. Or it can be silent, the enormity of the emptiness in your future, spread before you. It has many faces and contains many emotions, and none of them are wrong.

And grieving takes forever, you'll always grieve but the intensity will change. There should be no judgement. How you grieve and for how long represents only the depth of your own connection to your loved one. Again, there are no rights, no wrongs.

I am aware this is the first time I've touched on grief. My own grief quietly blanketed me recently and I'm still entombed in her embrace. It came on slowly and gently. A mug she bought me, a book I lent her, a song we sang along to in the car. Even seeing the lovely palliative nurse who supported our family, while I was on shift recently.

It's been 3 years since she died and I wasn't expecting the anniversary of her death to hit so hard. I didn't wake up and intend to be sad. I acknowledged my grief and moved through a full and enjoyable day. The tears only falling when I held a loved one and we shared our loss. Since then it's been a long dull ache in my heart. I miss her, I miss her desperately 💜

14/12/2019

I had the privilege of being invited to the hospital's staff awards evening. The Butterfly team were nominated for being "Here to Help" and many of the team were there to cheer on and recognise all the incredible people that make a difference to people's lives in the hospital.

There were so many nominations: an oncologist, a fundraiser, the pharmacy team, a nurse who champions dementia care, the midwifery team, to name but a few.

It was both humbling and inspiring to hear about these incredible people who serve our community. These were not just people doing their jobs. They were going above and beyond! There was a mix of staff, volunteers and fundraisers - all collectively seen as vital to how the hospital runs and honoured in that vein.

We were also enthusiastic supporters of individually nominated members of our team - Jenny for 10 years voluntary service within the hospital and Angela for the passion and support she puts in as our Co-ordinator.

We didn't take home any award that evening. Our category was deservedly won by the lovely lady with the PAT dog who brings comfort and smiles in the form of her four legged companion. Instead we took home wonderful memories and honestly, that was more than enough.

I am so happy that I get to be a very tiny part of something I truly believe in 💜