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A message from Alex

Sara(1957-2015)

Hello to everyone who has been following my mother, Sara’s, blog.

My my name is Alex, mentioned in several of my mother’s posts. I feel honoured to have shared so much of my mum’s journey with her.

Sadly my mother passed away on Sunday November 29th in St.Gemma’s Hospice. It has been a very sad and emotional time. My mum fought on until the very end. She continued to be so strong, brave and to support those around her.

Thank you for all your lovely cards and messages. I have felt so moved and blessed to have such amazing support shown to my mum, to me and to my family. Please feel free to write in the comments on the blog. All comments and wishes will be passed on to the family.

The funeral date for my mum is going to be December 22nd at 13.40 at Lawnswood Cemetery in Leeds. We will then go to The Lawnswood Arms for refreshments and to celebrate my mum’s life. My mum was very keen that everyone was able to share their memories in a relaxed and comfortable environment after the funeral.

My mum requested that everyone who attends wear a splash of colour. She wanted her funeral to be a celebration of life and for people to think of all the positive and meaningful moments they have shared with her.

Through her blog, my mum kept in contact with old friends, and made new ones. She inspired many fellow sufferers, especially those with secondary cancer. In return, she was aware of the enormous love and good wishes that you were all sending her way. This meant a huge amount to her and definitely made her journey a less lonely and daunting one.

Thank you all once again

Alex

After the funeral I will be returning to this blog to some housekeeping, and also to share a few more photos and perhaps to write a bit about some of the experiences I shared with my mum. If anyone has any questions or would like further information, email me at jayjournal1@gmail.com or write in the comments section of the blog.

Dublin

Happy Mother’s Day Mum xx

Sara-portrait

Lots of love Ali xxx

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From St. Gemma’s

Writing from St. Gemma’s

Just a quick update for all those lovely people who care so much about me. It’s difficult to know what to write when my situation changes almost daily, as we try different medicines and strategies.

Breathlessness is my main problem at the moment. It makes me even more appreciative of the special kind of care that I get here in the hospice. I have an emergency procedure booked at Bexley for this Monday where they will attempt to drain fluid from my lungs in order to help me breathe. It will be a massive relief if they’re successful, as being unable to breathe is both distressing and terrifying.

My CT scan last Thursday showed areas of widespread disease progression, but gave the doctors a better indication of treatments to try. None of the treatments have certain outcomes. All have their downsides and the benefits are not necessarily long-lasting, but I try to keep an open mind.

Ali is an absolute star and cooks almost daily for Lloyd and I, which makes a welcome change from hospice food. It’s his special take on ‘meals on wheels’!

I will stay in touch for as long as I am able. I thank everyone always for their love and kind wishes.

 

Re-admitted

The Dales Ward in St Gemma’s Hospice

Although I came home from St Gemma’s Hospice on Thursday with my pain under better control, the hospice doctor suggested that I should be re-admitted today or tomorrow to attempt to better control my breathing. Recently, I have begun struggling with breathing, particularly when faced with stairs or any kind of incline. I have to say it was a great relief to be based in the Dales ward on the ground floor of the hospice, without the need to even think about stairs. I have agreed to be re-admitted tomorrow and I trust that the amazing staff will work their magic yet again.

 

September Song 2015 (for Lloyd)


You say its hard for you to accept that I’ll soon be gone

That as time goes by, I seem to become increasingly immortal in your eyes

Is it because, for me and those close to me, we now experience life in all its rich and vivid intensity?

Is it because, for us, life is no longer a pale imitation of itself, but a blazing fireball – just as we know the sun will be, before it dies?

 

How many times this summer have we sat in our garden chairs, looking with new eyes?

Watching in fascination as a whole variety of bees fly from bush to flower, flower to bush

How many times have we listened with new ears, to the different kinds of birdcall?

‘They talk just to me,’ you say with conviction and joy.

I know it helps you feel connected to this world and to worlds unknown.

It helps you feel real in the midst of everything that now seems so temporary, transient.

Am I immortal? … Perhaps in the scheme of things, I am… and you are too.

 

‘Supermoon’ outside my house in Chapel Allerton

 

Outside in the garden of St. Gemma's

Outside in the garden of St. Gemma’s

Just a quick note to say I’ve been rescued once again by St Gemma’s Hospice where I’ve spent a fortnight having symptom control for chronic, debilitating pain in my spine. I’m so grateful to everyone here. The poem below was written when I first arrived and was struck by the diversity of cases in the ward and yet the similarities of our situations.

A view from the hospice ward – 5 beds

At peace with herself, quiet, still, accepting. ‘I won’t be leaving here’ she whispered to me on my arrival, by way of explanation. She inspired me, and I told her so.

Wheezing, struggling to breathe – unable to climb into her bed unaided, squeezed into her chair, head slumped onto her chest. What to say?…What to do?… How to connect?…I don’t know.

Emaciated, limbs like twigs, bent double, screaming for someone to ‘take it away’. Bony hands clasped to her head in helpless anguish. ‘What have I done wrong?’ she asked, incomprehension glazing her watery eyes. ‘Nothing.’ I answer. ‘You’ve done nothing wrong.’

Bright eyed, seemingly robust, looking forward to her favourite poached eggs the next morning – then gone without warning. No one saw that coming.

Then you arrived… as pale, waxy and still as an alabaster statue, all bodily functions closing down – until a nurse recognised you and talked to you about your exotic travels around the world. It would have been so easy not to know – not to see beyond the mask to the person you used to be…

 …to the person you still are. You are still you and I am still me. This is the magic and meaning of our lives, of our very existence.

 We are who we are, and we always will be.

My view of the garden at St. Gemma's

My view of the garden at St. Gemma’s

My completed radiotherapy mask

My completed radiotherapy mask

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Farewell to my lovely hospice companion

A week last Monday, as I sat making my mask at St Gemma’s Hospice, one of my hospice companions and I shared our recent spiritual experiences together. This was the first time we’d spoken about anything so deep or intimate, and it felt very meaningful. She was explaining that she’d had an ‘out of body’ experience where she felt totally at peace and she no longer feared her death. She talked at length and with great animation and eloquence about her experience. It was lovely to listen to her. I was able to identify with her immediately, as I too, have had similar experiences.

On occasion, I wake in a state of semi-consciousness, where I feel suffused in an indescribable sensation of light, warmth and peace. All worries and cares of this world are no longer relevant and I am somewhere other-worldly. The first time it happened to me, I could barely believe the incredible feeling of well-being that had totally washed over me. It has happened several times since I’ve been very unwell. It’s as if I’m being given a sign that I am safe and protected, whatever happens to me.

As I sat down to my artwork this last Monday I enquired as to why my friend wasn’t with us, and I learned that she had died at the weekend. This was a great shock to me because although we’re all aware of being terminally ill, she had appeared particularly robust, had just enjoyed a few precious days away with her family and had seemed a long way from the end of her life. Alex asked me whether I thought she knew her life was coming to an end, and I suspect that at some level, she did. I’m sad of course, but at the same time I feel very reassured by our shared experiences of being part of something ‘other’. I think she was being prepared for her imminent death and I’m so glad she no longer felt fear or anxiety. Her death and our conversation has helped me to adjust to the fact of my own imminent death, whenever that might be.

Our conversation reminded me of why I am drawn to the Quakers and to their fundamental belief that we all have ‘God’ within us. I think it’s very important and uplifting to recognise that goodness in one another.

Medical update

I continue to have tremendous support from St Gemma’s Hospice, and today my bathroom was fitted with extra grab rails so that I can continue to shower and bath independently. They also delivered a couple of triangular walking frames so that I can get about more independently without the risk of falling. We’re having to raise the daily dose of morphine due to persistent bone pain and we’re attempting to reduce the steroids just a little so that the build-up of fluid on my stomach makes it easier for me to breathe. I realise it all sounds pretty grim, but I’m still here with a zest for life.

With the aid of all the medication I take, including anti-depressants, I now make the effort to wear all my decorative Navajo jewellery and I am attempting to be stylish once again with the help of accessories, rather than simply giving in to my strange steroidal appearance! I think the hardest thing in this situation is making constant adjustments in a generally downward direction. It always takes a while to accept and adjust to these downward turns, and then of course, something else is guaranteed to come along out of the blue to take me even further down the inevitable path!

No more cutting, burning or poison

The one thing that feels so right for me is that I refused chemotherapy and that I no longer have scans. In fact I don’t go to Bexley at all, as the oncologist’s job is to measure, monitor and treat with either the knife, poison or by burning. If I died tomorrow, I have lived significantly longer than expected and I feel that I still have some control. I do not live in constant fear and anxiety of hospital appointments and tumour markers, and I enjoy as much of my life as possible. I enjoy a reasonable quality of life considering my circumstances.

Me and my clever niece Briony who has just graduated this month.

Me and my clever niece Briony who has just graduated this month.

The things that make my life worth living

Of course I feel sad that I can no longer dance, but I think one of the reasons I cope well is that I am able to be thankful for the amazing times I’ve had, while not living with an overwhelming sense of sadness and regret. I take great pleasure in the things I can still do without dwelling on what I can no longer do. I love waking with a sense of anticipation each morning. I love to see my family and friends and I still love to cook and eat. I’m loving my garden with its somewhat random but beautiful display of summer colours and I love to experience the sunshine and rain on my skin.

A special day out with Sue

A special day out with Sue

Helping one another

The suddenness and unexpectedness of my friend’s death made me really want to share some of my thoughts with you all. I get tremendous support from your ‘likes’ and comments, and I would like to think that my reflections are helpful to others too. Death is an inevitable part of life and I know that it helps me to read and to listen to the experiences of others. On Sunday I had the great pleasure of listening to Clive James talk once again about his poetry. In his poem ‘Early to Bed’, he writes about his terminal diagnosis leaving himClive James

‘…………… with so much still to say

On how I came to have so little time’

(From Sentenced to Life, by Clive James)

To hear a moving interview with Clive James
on The Echo Chamber (BBC, Radio 4) just click on this link HERE.

.

 

sara-14

 

A tribute to St Gemma’s Monday Day Hospice group

Breast cancer, bowel cancer, liver cancer, lung cancer, prostate cancer and a whole range of other more obscure cancers… in addition to Parkinson’s, dementia and diabetes. Those of us at the Monday Day hospice group suffer from a mix of these conditions, and more. We are all such different people from different walks of life, but the one thing we have in common is a terminal diagnosis. Still, we turn up each Monday and seem genuinely happy to see one another. We all arrive in variable states of wellness or illness, occasionally too poorly to even keep our heads up or to eat, but sometimes surprisingly upbeat and able to show genuine empathy and affection to one another.

 

Last Monday I felt a huge rush of love and affection for these ordinary people whose lives have been totally changed by their illness. I felt a deep connection with my fellow hospice visitors. I felt I belonged to something very spiritual and meaningful. I was so aware that although we had all had broken bodies, we had spirits that could not be broken. People talk about the courage we show. We all have so much more courage than we could imagine. The courage is in coming to terms with what life throws at us and still carrying on in the best way we can, with good humour and a strong spirit. That surely applies to each and every one of us. Life is not easy and we all have to deal with the unexpected and the unwanted.

 

My life, until six years ago when I received my terminal diagnosis, was all about being ‘successful’. I question that whole concept now. I feel I have been more successful in the past six years than at any previous time in my life or career. Success is no longer about how wealthy, influential, intelligent or attractive I am… it is about my ability to share, to give and to show appreciation. It is about how I live my life with the cards dealt to me rather that how I can enhance my own status and significance. I am only significant in my relationships to others.

A tribute to all my tango friends…

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… who made my dancing years so very happy

I feel very sorry that so many lovely people, including my dancing friends, will think that I have disassociated myself from them. I have such lovely, loving memories of those amazing dances with some of the nicest people I have ever met. I suppose though, that part of my continuing survival is acceptance of my new existence. I have no idea how far the cancer has progressed in my liver, but it will only get worse and is likely to be the cause of my death. I know that my tumour marker is now in the 2/3000’s but I have no idea what it actually is. I cannot walk without a stick, never mind dance, and the constant but necessary use of steroids means that my face and body are developing a rather odd shape that make me feel very self-conscious. I need anti-depressants to avoid feeling suicidal. It has taken me a long time to arrive at this stage of acceptance but I now wake up feeling a sense of anticipation and gratitude once again, and I suppose I don’t want to disrupt that sense of peace that I now feel, and which can actually be quite wonderfully strong.