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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

P1070429

From St. Gemma’s

Writing from St. Gemma’s Photo by the ever-faithful Lloyd Spencer

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.

 

 

 

Dublin

Inside the grand Buswell’s Hotel, Dublin

Well, who’d have thought it possible? Not me. Three weeks ago I met a friend in the local supermarket and said to her ‘I’ll never fly again. It simply isn’t possible.’ At that point, I could barely lift my head from the pillow and I’d just been violently sick while attempting to do a little bit of shopping! Then my very clever and caring hospice nurse suggested a medicine that acts on the central nervous system, with the standard caveat that it may or may not be effective. Amazingly, I’ve since had a renewed lease of life.

 

So this week, I flew to Dublin with Alex to see the Caravaggio painting (The Taking of Christ) in the National Gallery of Ireland. The whole experience was incredible and uplifting and felt miraculous. Dublin had such a joyous, relaxed vibe and we had a wonderful time together. I do feel sorry for Alex having to accompany his mum more or less all the time, but these times are precious beyond words to us both. Apart from one nasty fall at the airport, I managed remarkably well with his support.

 

The one huge disappointment for me was that I somehow mislaid my precious denim jacket with all its badges collected over a period of twelve years, some of which are of great sentimental value, and a beautiful felt scarf. The good news however, was that after backtracking and phoning everywhere we’d visited from the hotel to the gallery to the superb organic café where we’d had lunch, I eventually contacted the Starbucks where we’d gone back to regularly like homing pigeons, and they had it! My joy knew no bounds, and the lovely girl I spoke to is sending it back home to me. It’s almost worth losing something so precious just to be reunited with it again. I also know that at some point it will mean a great deal as a memento, to both Alex and Sue.

 

Tomorrow I am back at the hospice for the day. Once again, I have the energy and enthusiasm for being there, for taking an interest in other cancer sufferers, for doing some physiotherapy and for making progress with my radiotherapy mask. I have no idea how long this period of relative wellness will last, but I am grateful beyond words. Instead of waking up each morning with a sense of unending despair as I did a couple of months ago, I now wake with a sense of anticipation at what each day might hold. I do have worrying side effects as a result of the numerous types of medication (including steroids) that I now live on in order to survive, and occasionally I experience moments of blind terror knowing that some of the side effects can in themselves be fatal.

 

The whole business of my unexpected revival (however temporary) has made me reflect further on Dignitas. I am passionately committed to the Dignity in Dying campaign but while ever we, as patients, are forced to take responsibility for making our own travel arrangements to a foreign country when we are so very ill and incapacitated, there is a real issue about timing and appropriateness. There has been no ‘right time’ for me, even though I would have willingly been transported by tardis to Switzerland when I was at my lowest ebb. Today I feel differently, but I could never have predicted that change.

IMG_3869

Relaxing in front of my new Japanese Maple tree (Acer)

What do I love about my life at this moment? I am loving the summer, the long days, the short nights, the stunning trees and flowers, spending time with precious people, the fact that I am still able to cook and eat for my own health and well-being and that I can manage a little daily walk (albeit with some support). I have rediscovered the joy of living, and I know it shows in my whole being.

 

Heron from the hide

Heron from the hide

Taking advantage of the glorious weather we’ve had this last week, Lloyd took me for a trip out to the hides at Adel Dam alongside Golden Acre Park. It felt incredible to be well enough to make the short journey, after having spent months now unable to do much at all. I am responding unexpectedly well to a nerve pill that is helping me to eat well and function much more normally. I had been thinking ‘this is it’, and ‘I’m hanging on to life by a thread’, and then unexpectedly, I find I have another little reprieve.

Flowers in my garden

Flowers in my garden

What a strange journey I find myself on. I don’t think or talk or talk of the future. It simply doesn’t have the kind of reality for me that I can invest in. In an interview recently a 55-year-old friend was asked what she expected her professional life to hold for her in 2, 5 and 10 years’ time. I know it’s a standard question that they’ve been asking in education for years, but my own circumstances just made it seem presumptuous and somewhat bizarre.

One of the many types of bees in my garden

One of the many types of bees in my garden

As I looked out of the hide onto the water, watching all the fabulous birds, (including jays, woodpeckers, a kingfisher and a heron) I had that strong sense once again of another (as yet unknown) world to which I don’t yet belong. I had that strong sense of being on ‘this side’, watching something magical and mysterious on the ‘other side’; something that related to me in a way that I don’t really understand.

Blue jay from the hide

Blue jay from the hide

What I do understand is that it’s the power and magnetism of nature that has an incredibly impactful hold on me, and there’s something reassuring about not understanding much beyond that. Not quite understanding and not having a definitive religious belief system leaves me feeling free of restrictions, open to possibilities and always connected to the natural world. Personally, I don’t need more than that.

Glass half full... or half empty?

Glass half full… or half empty? I guess it’s my choice.

At this moment in time, I need to constantly remind myself to be grateful for the good things in my life including the care I receive from the hospice, the love and support of my family and friends, the ability to eat normally, being able to enjoy Ali’s exhibition at the Opposite cafe

Visiting the Amanda Burton Opening at The Inkwell on Potternewton Lane

Visiting the Amanda Burton Opening at The Inkwell on Potternewton Lane

and being fortunate enough to witness yet another glorious summer. The constant use of steroids mean that my face has become ‘steroidal’ and I sometimes feel quite shocked by my own image when I happen to catch sight of myself in the mirror. I put it all down to life’s learning. This is not what I expected to happen to me and it’s not how I expected to end my days looking, but it’s the way it is. My balance is extremely poor, making walking difficult and dancing impossible. Life for me is a challenge in ways that were never anticipated, not even by the medics, as cancer has a way of attacking most unpredictably from ‘left field’. I have hit rock bottom in terms of my mood but I never want to become bitter and resentful for what’s happening to me. I want to remain grateful for the very good life I’ve had and for the huge amounts of joy I have experienced, and continue to experience.

Putting up Ali's exhibition... it's a family affair

Putting up Ali’s exhibition in the Opposite Cafe in Chapel Allerton… it’s a family affair

Beautiful peonies in my front garden.

Beautiful peonies in my front garden.

The days slip away as I lay on the sofa wrapped in blankets, watching the clouds and the trees change continuously through my picture window in the living room. I drift in and out of sleep from the moment I awake to the moment I go to bed. On a good day, I might be able to manage a short trip into the village with Ali. Yesterday, I could manage nothing whatsoever, but today he wheeled me up to the café in my hospice wheelchair. It just felt good to be out with my son, and to have achieved a little bit of something.

 

It’s difficult to know what to say at this stage. Both my palliative consultant at the hospice and my oncologist at St James’s believe that the cancer is now responsible for my significantly reduced quality of life. Life is becoming unbearably hard, but bear it I must. Dancing, travelling, socialising and even cooking are now things of my past… things of my dreams. I’m not sure when everything changed so dramatically for me, but at some point I moved from ‘living in the present’ to simply existing. Existing holds little joy, as the main aim of each day is to attempt to remain awake for as long as possible.

 

I hugely appreciate the efforts of all my wonderful friends and family in their efforts to keep in contact with me and to support me as much as possible. Sadly, I’m not really in a position to respond, other than in spirit. It’s very hard even for me to appreciate how much things have changed for me and how much more they are likely to change over the next few months. I can only wake each day and attempt to enjoy and appreciate as many moments as possible.

 

I continue to see the medical staff at both the hospice and hospital and I live in hope that some small tweak to my medication might just help me to enjoy some further quality of life.

Off on our adventures

Off on our adventures

 

Who would have believed that as recently as a fortnight ago I was walking the length and breadth of London, on a trip with Alex and Lloyd? It’s very hard for me to imagine that I was capable of even making the journey as far as the railway station, never mind being able to walk for miles, eat with enthusiasm and enjoy the sights, which I really did. It’s a wonderful memory to have, but sadly I believe it may the last of its kind for me.

 

On the way to Tate Modern

On the way to Tate Modern

 

Since returning home at the end of March, my health has deteriorated rapidly. My pre-radiotherapy symptoms have all returned with a vengeance, and in addition I am struggling to eat. Simply functioning at any level is becoming increasingly difficult, and is virtually impossible without the help of steroids. The current view of the hospice doctor is that the cancer is now dominating and that there is little to be done.

 

Reflections

Reflections

My sources of consolation over this past fortnight have been two books. One is ‘Staring at the Sun’ by the psychotherapist Irving Yalom, and the second is ‘Sentenced to Life’, Clive James’ recently published poetry book. Both books are specifically about facing death, but neither is depressing to me. In fact, I can highly recommend them both.

 

I also want to mention here how very, very fortunate I feel to have so many friends who have given me such support throughout my journey. I think of my friends as surrounding me in concentric circles from my closest friends who have stayed beside me throughout my illness, to my more distant FB and dancing friends who have enhanced and brightened my life along the way. I am enormously grateful for everyone who has shown their love and support since the start of my terminal diagnosis. I have been incredibly moved by the kindness shown to me by so many lovely, generous hearted people. I want you all to know that my love and appreciation remains with each of you, even though I now have little energy left for socialising or even for responding to enquiries about my health.

 

Still enjoying the moments

Still enjoying the moments

 

Of course, there is always the possibility, however remote, that I may make an unexpected recovery. On the other hand, I feel rather like a cat who is getting ready to find a quiet corner with a chair, in order to crawl under it alone and to go to sleep. Until that moment comes however, I will continue to carry on in the best way I know how, and to update everyone through this blog.

Sitting in my beautiful little garden among a burst of colour... thank you Lloyd and Alex!

Sitting in my beautiful little garden among a burst of colour… thank you Lloyd and Alex.

I have been so moved to see and hear Clive James speak recently about his imminent death. I sat and listened to him talk about his forthcoming poetry book ‘Sentenced to Life’ (due to be published on 9th April) the other night, with tears in my eyes. I identified so closely with him on so many different levels; partly for the obvious reasons of being close to death but still so full of life, partly for believing that the ‘heaven’ we all seek is here with us on earth and partly because he relies on his memories to enjoy the travel experiences that he can no longer have. Particularly though, I identified with his longing to witness the leaves of the Japanese Maple tree (bought for him by his daughter) turn from green to the most stunning flames of red in the autumn.

Enjoying a walk in Roundhay Park on Easter Sunday morning... glorious.

Enjoying a walk in Roundhay Park on Easter Sunday morning… glorious.

Except for me, this is it. This is what I’ve been longing for… the white and pink bouquets of blossom balanced so exquisitely on their branches, the ivory and pale pink candles of the magnolia trees and the joyous, bright yellow daffodils, all symbolising new life and new hope. I can hardly believe that I am here at this incredible moment in time, where life in all its glory seems so temporary yet also eternal. I am grateful and thankful… and sad beyond words.

By the Dry Dock for the Leeds Food Festival on Easter Sunday.

By the Dry Dock for the Leeds Food Festival on Easter Sunday.

Listening to Clive James gave me great comfort. He is so articulate and still full of sparkle and wit, but with a new humility, gentleness and wisdom that has come from facing his own mortality. Those qualities have developed in me too, and for that I will always be grateful. I feel I’m learning all the time, as I did this morning when I heard Terry Waite talking about facing a mock execution during his time as a hostage. He said that at the point when we believe death is due, certain chemicals kick in to give us a sense of deep peace. I can really imagine that to be the case.

The king of green tea!

The king of green tea!

On the medical front, I continue to face huge ups and downs. Despite seeming to recover well from the radiotherapy, my health once again plummeted when I came off the steroids. At the moment, the hospice doctor is attempting to stabilise me so that I can continue with some of my plans to do special things with family and friends. I want to show my thanks to the people who have given so much to me, and I want to continue to share special memories with them.

Springtime in England is beautiful… I just love it when our little corner of the world turns to face the sun after a long, dark winter. It’s just so wonderful to literally be living in the light again.

My favourite time of year, when the blossom bursts out

My absolute favourite time of year, when the blossom bursts out

I am so elated to see this glorious Spring! This is what I wanted above all else, and I’m thrilled to see the blossom trees bursting into shades of pink and white. Winter is over and my radiotherapy nightmare is behind me. I have taken my oncologist’s advice and booked do-able trips away with friends and family, to share more special times with. I believe the radiotherapy has done its job in that I’m now able to leave the house and to make a few plans. It’s many, many months since that was possible. I still need someone by my side to provide different levels of support and it’s still a challenge to leave the comfort zone of my home, but I no longer feel totally dependent and unable to leave the house.

A very special day in York with Alexander

A very special day in York with Alexander

Sometimes I’m scared, especially when I’m alone. Like the late, great Terry Pratchett who faced his debilitating illness and his imminent death with such openness and courage, I too see Death as my constant companion. I wake up each morning with Death greeting me, and he remains in my peripheral sights at all times. I try to keep a few steps ahead of him by constantly moving. I hold on to the belief that by keeping moving, I can dodge and outwit him… for the moment.

Coffee in the Leeds Design Gallery

Coffee in the Leeds Design Gallery

So for the foreseeable future, I have all sorts of lovely outings planned with my wonderful family and my truly amazing friends. I am basking daily in the beauty and wonder of Spring, and my focus remains on living life to the full, and sharing these precious days with those I love… so keep your distance, Mr D. I’m not ready to go with you.

Day Hospice

Feeling the need to write once again

Feeling the need to write once again

 

I have just returned home from my first experience of ‘Day Hospice’, where I have been placed on a 12 week programme. After being in what has been an indescribably dark place since my radiotherapy treatment, I find it hard to believe how calm, relaxed and reassured I now feel. The question of going into a hospice for any reason whatsoever always raises mixed feelings and emotions. Although hospices increasingly provide more services for the chronically ill, it is hard to avoid the association between a hospice and death. It is for this reason that many people with a terminal cancer diagnosis simply avoid the hospice and keep going instead to Bexley, St James’s cancer wing.

 

Although my recent stay in St Gemma’s was a necessity and a godsend, I really was not sure about being encouraged to attend Day Hospice as an outpatient. I knew they provided tea, biscuits, lunch and various therapies including physiotherapy and art therapy, but I had anxieties about spending up to five hours in the company of other very sick people. How wrong I was to be concerned, and how unreasonable of me to label others in that way! I would be devastated to think anyone would do that to me.

 

Firstly, people are people, and deserve the love and respect for being themselves regardless of their hugely unfortunate situations. There were lovely people there today. I am a sociable person and I enjoy the company of others. I realise that I have become very insular over recent months and have hardly stepped out of my small and hugely comforting social circle. It was good to be able to stop focusing on myself and to enjoy sharing with others.

 

I also saw the lovely, caring doctor there who will continue to review me and my medicines each time I visit. This was particularly important to me in view of the fact that I had a dreadful scare of Saturday when I reduced my steroids as instructed, and experienced a full blown return of my pre-radiotherapy symptoms. None of us know whether the radiotherapy treatment has worked. It could simply be the steroids that are having a positive impact, but being able to discuss it with caring and knowledgeable professionals was just so wonderful, and exactly what I needed. I had been in such a very dark place and could see no way out.

 

The most fantastic thing for me though, was the art therapy. I took my own project which everyone was wonderfully enthusiastic about and which they all seemed to find very exciting. The project was my radiotherapy mask which looks like a puffer fish. It is made from a kind of resin which is full of tiny holes, and was fitted very closely to my head. The ‘fins’ are where it was riveted down to the radiotherapy table. These masks are lined up on shelves at Bexley until they are discarded, but I had always wanted to bring mine home with me and to turn it into a piece of art. I had the most therapeutic and fun time exploring the huge range of materials and ‘playing’ with ideas, being creative. It made me realise how much I’ve neglected this vital aspect of myself even though I preached it constantly in all my years working with children and adults.

 

At the end of today, I feel like I’m a different person from the one who walked through the hospice doors this morning. Thank you, St Gemma’s Hospice.

Dance, dance, dance

Argentine tango on the hospice ward from Lloyd Spencer on Vimeo.

 

 

Skipton

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Lloyd and Sara dancing a milonga at Hemmingway’s Cafe, Skipton from Lloyd Spencer on Vimeo.

Over a hurdle

Reflections in St Gemma's Hospice

Reflections in St Gemma’s Hospice

Where to start? I’ll start with the best. Yesterday, on my first day home from St Gemma’s Hospice (after 10 days as an in-patient), I found the strength to go to Ed Petrossian’s fantastic afternoon tea dance at Hemmingway’s café in Skipton. Lloyd kindly drove me through the most beautiful scenery in glorious sunshine, and looked after me when we arrived. The fields were full of sheep and lambs, and it was as if all the trees were just waiting to burst into spring. The water in the reservoir just between Ilkley and Skipton was the brightest blue as it danced and sparkled in the sunshine. I savoured every moment, so aware of a sense that ‘this is it’.

Dressed to dance!

Dressed to dance!

To dance once again was an absolute joy. As soon as I heard the beautiful haunting sounds of the tango music, I felt overwhelmed with pure emotion. It was also very special to reconnect with some of the loveliest people in the tango world. It made me realise how much has changed for me over recent months and how much I’ve missed this simplest but most joyful of pleasures.

I was admitted into St Gemma’s Hospice a week last Tuesday, the same day as my first radiotherapy session. As I unpacked my things I felt a little guilty at being admitted, while feeling comparatively okay. Three hours after my first treatment however, I became violently ill with continual vomiting and a head pain like nothing I’ve ever experienced in my life. I eventually slept after taking a concoction of opiates and other drugs, but I then blacked out twice when I visited the loo. The following day, the oncologist confirmed that my symptoms were consistent with my brain swelling and that only steroids would have any effect. Thank goodness, the steroids worked more or less immediately and I’ve been very slowly, but surely improving since then.

I left the hospice this Friday evening feeling incredibly fragile and vulnerable, but after taking a couple of sleeping pills and having a good night’s rest I felt much revived the following morning. I believe the radiotherapy treatment has had a positive effect on me, despite the horrors I’ve endured. The right side of my face, particularly my eye, is more mobile and expressive. I’m no longer drooling when I eat and drink, and I can walk a short distance without wobbling to the left and right. Apparently the radiotherapy will continue taking effect over the next week and then that will be the extent of its value. I can now see why both my hospice consultant and my oncologist urged me to go through with the treatment. I believe the tumour at the base of my skull was growing steadily and pressing increasingly hard on the nerves, impacting quite significantly on my quality of life. Perhaps they could all see my world closing in on me, while I had begun to accept it as my ‘new normal’.

St Gemma's Hospice

St Gemma’s Hospice

It’s all incredibly challenging, and my spirit has been lower than ever before. I’m not eating as well as I have in the past, which makes me feel less in control, my hair began to fall out this morning and I have a strong feeling that this is my last lap. I guess the radiotherapy accounts for much of the weakness, fatigue and despondency, so at least I’m now on the right side of it now. I’m still focused on the forthcoming spring and even the summer. Every moment of it is tinged with an inevitable sense of grieving, but I am still thankful beyond words that I am here for the most beautiful and exciting time of year and that I am surrounded by so much love.

‘There is the land of the living, and there is the land of the dead. The bridge between them is love’.

Still dreaming…

Preparing to make Tamara's Ratatouille from Yotam Ottalenghi's 'Plenty'

Preparing to make Tamara’s Ratatouille from Yotam Ottalenghi’s ‘Plenty’

The plunge has now been taken and I have had a mask made and a scan taken in preparation for radiotherapy to the base of my skull. Before signing my agreement to radiotherapy (due to begin on Monday) I was told about the side effects. In addition to the inevitable tiredness and irreversible hair loss that accompanies the treatment, I may feel nauseous and my brain may swell up, causing headaches that can only be treated with steroids. These side effects would typically last a month. I am resigned. If the treatment works and I am given more quality time, then it will be worth it. It is now such a long time since I walked independently or danced my beloved tango that such things seem as if they belong in the land of my dreams.

Having fun on a freezing day in Roundhay Park

Having fun on a freezing day in Roundhay Park

Interestingly, my symptoms are highly unusual and only 2 or 3 breast cancer patients are treated for these symptoms each year, at Bexley. After all my experiences, I pay no heed to statistics now. I am familiar with being the exception to the norm, and I guess that could equally apply positively, and not just negatively. According to the statistics, I should be dead by now, the average time span for a secondary breast cancer patient being between 2 and 5 years.

Being so aware of the imminence of my own mortality, I am keeping my sights set on living through another spring and summer. Just as Lynda Bellingham longed to see one more Christmas, I long to see the magnolia and blossom trees in bloom. I want to feel the warm sun on my skin and to sit in my garden wearing cool cotton clothes listening to the birds sing and watching the flowers grow. When people ask me about my views on the after-life, I always say that for me (as in the Belinda Carlisle lyrics) ‘Heaven is a place on earth’. I don’t know about anything else, only that this life matters.

Yet another cup of green tea!

Yet another cup of coffee!

In the precious 2015 diary given to me by a friend, there is an opportunity to reflect at the end of each month on the golden moments of that particular month. It gave me huge pleasure to think about everything special that has happened to me during January. Such moments include special days out with family and friends, the success of the blood transfusion (however temporary) and the energy to begin writing my cancer story in book form (something I’ve long since wanted to do).

This coming month will undoubtedly be a challenge for me, but I know that when I come to write my positive reflections for February, they will be there.

Still enjoying going out for a cup of coffee... Yay!

Still enjoying going out for a cup of coffee…

I want to thank everyone who has been so kind in their responses to my FB post showing me having a blood transfusion at St Gemma’s hospice last Thursday. Your love and warm wishes fill me with gratitude and positivity. I now need to wait a few days to see whether the transfusion has made a difference in terms of giving me more energy. My white blood cells and my haemoglobin are very low, but I have lived with my haemoglobin being low for so long now that my body has slowly adjusted. Therefore, I have not really been conscious of how dramatically things have changed for me over the past year.

Lloyd, my chauffeur and coffee companion... Lucky me

Lloyd, my chauffeur and coffee companion… lucky me

It is probably just over a year ago since ‘normal’ included meeting friends in York and Skipton, driving myself to Ilkley for a walk in the woods, walking to Chapel Allerton centre three times a day and dancing three times a week. None of those things are possible for me now, and I’m not quite sure when things changed for me. This disease creeps insidiously through my system, until one day I realise that I’m looking wistfully back to a time when I was able to do things differently. Looking back in that way helps me to see so clearly that I must fully appreciate whatever I can do right now, because this ‘now’ will soon too become a thing of the past.

I am so thankful that I was able to make the choice of having the transfusion at St Gemma’s. As my Mum remarked, it was such a wonderful and novel experience for her to be welcomed and to be treated so kindly. She is far more used to being treated as an inconvenience when she comes to support me at the hospital. The one thing the hospice nurses have, and it makes all the difference in the world, is time… time to check whether anything is wanted or needed for extra comfort, time to smile and be pleasant, even time to sit down for a chat! As I said to the nurse after she’d struggled hard to insert the cannula into my now threadlike veins, ‘If I have to suffer anywhere, then I’d choose to suffer here’.

Being looked after by my lovely son

Being looked after by my lovely son

At last I have come to the decision to have radiotherapy to the base of my skull. I have been procrastinating for months now on the basis that I was coping (in a fashion), and would rather not opt for a treatment that must include the lower part of my brain and leave me tired, possibly sick and with permanent hair loss. I recall feeling helpless and clueless when my oncologist asked me a fortnight ago what would make me decide to have the radiotherapy. I simply said ‘I don’t know’, and I really didn’t know. My consultant at the hospice expressed it perfectly for me though when he said, ‘You’ve reached the tipping point’. I understood entirely. It’s the point at which my quality of life is seriously compromised. It’s the point at which I intuitively know that the possible benefits of the treatment outweigh the unpleasantness of the treatment itself. The tumour at the base of my skull which is pressing on nerves has left me unable to walk unaided, and with problems to my sight, my hearing and the control of my mouth on the right side of my face.  Apparently there is a 50% chance of the radiotherapy being effective, and it suddenly seems worth the risk.

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‘Till next time’

Sadly for me, I learned on Friday that my tumour marker has risen by quite a lot since it was last taken a couple of months ago. I am therefore quite sure that the drug Tamoxifen, in which I had put some small hope, is not working for me. I am still quite sure that I don’t want chemotherapy, so there don’t seem to be any options left for me… other than to ‘Keep calm and carry on’! What would be perfect under the circumstances though, is for the transfusion and the radiotherapy to work so that I can enjoy the spring of 2015. How I would make the most of every single day and every single experience!

As the Ralph Waldo Emerson quote on the back of my diary (a special gift from a lovely friend) says, ‘Write it on your heart that every day is the best day in the year’.

Happy New Year 2015 to all my family and friends

My new year’s post is a little late this year because I’ve had a few ‘poorly’ days over the holidays, where even sitting down and writing my blog required significantly more energy than I had. (I learned on Friday that both my full blood count and my white blood cells were very low, accounting for my lethargy.) Today is a good day for me though, which is especially great because Sue and Briony came to visit us in Chapel Allerton (see photos).

Happy New Year 2015

Happy New Year 2015

Cancer – the best way to die?

This morning I was somewhat taken aback to hear that a Dr Richard Smith had written in a blog post that cancer is the best way to die. Dr Smith explained that terminal cancer gave people the chance to come to terms with their own mortality, while the excellent pain relief available means that cancer sufferers experience minimal pain. Interestingly, Dr Karol Sikora (a leading oncologist) who was being interviewed about Dr Smith’s assertion, said that doctors are notorious for being in denial about their own mortality.

I admit that having time to plan for, and to face one’s own death has real advantages, but I really don’t believe that anyone who hasn’t personally experienced living with terminal cancer is in any position to assert that cancer is the best way to die. Living with a constant awareness of one’s own mortality, and with the relentless physical degeneration that almost inevitably accompanies a terminal cancer diagnosis, has to be one of life’s particular challenges. Living like this can often lead to severe depression for the patient, and cause unbearable stress for those close to the patient. I have always resisted taking anti-depressants but my GP clearly expected me to seriously consider them as an option, simply as a matter of course. For many people, being forced to confront their own mortality day and night, without any respite, is too much to bear.

With regard to the ‘pain-free’ death referred to by Dr Smith, I can only assume that he has never truly engaged at any depth with his terminally ill cancer patients. Even if symptom control is greatly improved these days, which it undoubtedly is, the cancer treatments themselves, including the so called ‘therapies’ i.e. chemotherapy and radiotherapy can be hugely debilitating, causing horrendous discomfort and weakness, and significantly reducing quality of life. Dying from cancer can be a horrible, lingering affair where the patient feels parts of themselves die little by little, in advance of their whole body… in my own case; breast, ovaries, liver, bones, teeth and now possibly brain, hair and eyes. It is evident that Dr Smith has little empathy with the mental anguish that must be endured as a result of being constantly faced with such a debilitating and degenerative state.

I am sure that Dr Smith witnesses some extremely unpleasant deaths, but I object to his generalisation that death by cancer is the best way to die. Cancer is not one single type of disease, and there is no typical cancer death.

New Year tapas with Briony and Sue... special times

New Year tapas with Briony and Sue… special times

Debbie Purdy

About three years ago, I attended a Quaker conference on Assisted Dying, with Debbie Purdy as one of the guest speakers. I wasn’t in Debbie Purdy’s group myself, but my friend was and he said she was very impressive, despite the fact that she was wheelchair bound and in some pain. I have long supported her campaign for the ‘right to die’ and for the protection of those helping with an assisted death so they need not fear prosecution. In the end, she starved herself to death in a Marie Curie hospice. It really shouldn’t have had to be that way for her, but her legacy lives on as more and more people believe in the right of people to choose to die if their lives become unbearable due to a degenerative illness, when all hope is gone.

Debbie Purdy could not bear the thought that her husband would face prosecution if he helped her to have an assisted death. In the end, she would not have had the choice anyway  because she ran out of money. The longer a terminally ill person lives, the narrower their choices become. In my own case, I signed up to Dignitas a year ago, but since then I have put the option to the back of my mind because I have simply been too ill to plan for anything at all. I have no choice but to wake up each morning and see how I am. Some days I can do absolutely nothing, and some days I can be quite active. Regardless of that, I want the choice… I want to be able to do what is right for me. Debbie Purdy lives on in the hearts and minds of those of us who continue to campaign for that choice.

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Sue and Briony in the ‘Cup and Saucer’

In my dreams…

I remember Clive James (who is also terminally ill) being asked by a journalist whether he wished that he could make one final visit to his native Australia. Clive James replied that it was ok because he could go back whenever he liked, in his dreams. Thank heaven for our dreams. I now gaze longingly at the images in those travel adverts and brochures so prevalent at the start of each new year, wishing myself in all those special places; climbing mountains, walking in hills and valleys, sitting in the sun, looking out at the sea, anticipating new and exhilarating experiences, but all the while knowing that such opportunities are becoming increasingly remote for me. In my dreams though, I can rely on my memories and my imagination to take me wherever I want to go, and I am so fortunate to have a bank of those treasures in my mind. I am sure that I will continue to build up my store of special memories in 2015.

Working out the mysteries of Ali's jasmine green tea!

Working out the mysteries of Ali’s jasmine green tea!

Mr Stoddy joining in the family fun

Mr Stoddy, joining in the family fun

Christmas Eve 2014

A winter's day by the North Sea

A winter’s day by the North Sea

Christmas Eve, and prompted by my ‘Facebook Year 2014’, a time to reflect. When I saw the snapshot of my year in photos, as configured by Facebook, I was taken aback by the pleasure it gave me. Sometimes it feels as if the years drift endlessly on into one another, while my health slowly deteriorates and my world closes in on me. The lovely photos put together into a snapshot of 2014 reminded me of the joyful moments spent with family and friends, the pleasure I have had dancing and the wonder I have felt at the changing seasons.

 

More special moments…

A few days ago I had coffee with an old friend and former work colleague, and we were discussing the need for purpose in our lives… for all of us. My friend knew that I had always had a very strong sense of purpose at work, and I explained that I now put all that focus and energy into keeping myself as healthy and possible in order to extend my life expectancy. In other words, I said, ‘My purpose in life is to help keep myself alive’. I then thought about what I’d said and realised it wasn’t strictly true.

 

Purpose is not just about the self… it’s also about what we give to others, and I still have

... with Sue

… with Sue

a need to give, despite my limitations. I believe that my purpose at this time in my life is to be as fully ‘Sara’ as I can possibly be. To be ‘Sara’ means to retain my essential essence and vitality for as long as I possibly can. I know from watching others and from the way I sometimes feel myself, how easy it could be to just not put any effort into anything anymore. It would be so easy at times to give up trying, whether with my diet or going to the occasional dance or cooking for family and friends… but then I would just be taking, and I would have stopped giving of myself. I would have allowed Sara to fade away. That seems a very selfish way to be when everyone around me gives so much to me.

 

Whitby in November

Whitby in November

I am very moved at the end of this year, by the incredible generosity of spirit shown by all my family and friends, and I want to say a general but heartfelt ‘Thank you’. I am not special because my life has been shortened in this particular way… we will all die one day, but the love I am shown on a daily basis by all those in my life makes me feel very special indeed.

 

I wish all my family and friends greetings of the season, and a new year filled with joyful moments and special memories.

Cuddling Poppy in the Heart cafe in Scarbro'

Cuddling Poppy in the Heart cafe in Scarborough

Over my five and a half years of living with this disease, one of the things I’ve had to learn to endure on a regular basis, is needles. Like many people, I used to loathe them! The most traumatic for me these days is the cannula, which must be inserted into the vein for the purpose of scans, infusions, blood transfusions or simply to drip feed medicines, food etc… I remember asking early on what happens if the cannula simply won’t slide into, or stay in the vein. ‘Don’t worry dear’, said the nurse cheerily, ‘We’ll always find a vein… somewhere.’ The very idea of attempting to insert a cannula into veins I didn’t even know I had filled me with horror. The reason for my anxiety over cannulas these days is because veins go into hiding after a while. In other words, they ‘collapse’ after constant use, and the whole business of finding a suitable vein becomes more and more stressful for both patient and nurse.

 

Sue's turn for 'Poppy therapy'

Sue’s turn for ‘Poppy therapy’

A lesser trauma, but still something I’ve had to learn to manage, is the simple blood test which is required every time I visit hospital or receive treatment. The blood test will tell the oncologist, doctor or nurse how my organs (particularly my liver) are functioning, the progress of my cancer and my general state of health, all fairly critical for me at this moment in time. Although I have found ways of managing these blood tests in the light of absent veins, my most recent experience was very distressing for me. Phlebotomy clinics are generally very stressful places to be, with vast queues of patients holding their numbered cards waiting for their turn for blood to be taken, and visibly, highly stressed phlebotomists with little or no patience.

 

Some phlebotomists also seem to thrive on the little bit of power they have over the patient. Last week, I encountered such a person. I had gone to the hospital clinic very early as part of my coping strategy, so there were very few people waiting but several female phlebotomists clustered together, engaging in loud banter with a male hospital worker.

 

Having a wonderful time in Scarborough, with Sue,

Having a wonderful time in Scarborough, with Sue

I was taken into a booth and I asked the phlebotomist if she would please use a small needle. Before I could explain that this was a strategy for protecting my one useable vein, she shouted loudly for everyone in the room to hear ‘I’ll decide what needle to use, when I’ve seen your vein.’ When I rolled up my sleeve, she again loudly exclaimed ‘You want a small needle for that! There’s no way.’ She continued to shout over me as I tried to explain that I’d had some difficult experiences over my five and a half years of being punctured, and that I was trying to help myself. I accepted her expertise however, and then told her that Oncology needed results in time for my appointment the following week. This time she questioned (in a confrontational manner) why I was there at Chapel Allerton when I’m a Bexley patient. I am ashamed to say that I showed both my anger and my anxiety. I yelled back at her that I was a terminally ill patient with mobility problems who lived round the corner from CA hospital. At this point, the phlebotomist slammed down her equipment and declared that she wasn’t having anything more to do with me. She called a colleague and the job got done without further ado.

 

Beautiful winter trees as seen from the top of the Scarborough to Whitby bus

Beautiful winter trees as seen from the top of the Scarborough to Whitby bus

I am very cross with myself for allowing myself to become so angry and upset, but I strongly believe that phlebotomy training should include kindness to patients. Patients waiting for blood to be taken or cannulas to be inserted, span such a wide range. When people are quite a long way down the road of having a terminal illness, and have spent years suffering different traumatic treatments to extend their lives a little, they are already significantly anxious and tense. This is when a little bit of warmth and kindness goes a very long way… more than words can ever say. When I encounter warmth and kindness in the phlebotomy clinics I am almost overwhelmed by gratitude and relief. How wonderful if kindness was the norm!

Peaks and troughs

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At last, I feel able to write again. So many people over the past five and a half years have said ‘But there must be days when you feel dreadful… you just never show it’. The truth of the matter is that I have been fortunate enough, up until the past two months, to feel genuinely upbeat and reasonably accepting of my situation. It was therefore totally unfamiliar to me to feel so downbeat over the past two months. For me, the mental and emotional struggles are harder to manage than the physical ones, and I wouldn’t wish them on anyone.

Beautiful Coniston Water

Beautiful Coniston Water

This week though, there was a little glimmer of hope and light for me. I went to Bexley on Monday afternoon fully prepared to begin the radiotherapy to the base of my skull, and including part of my brain. I was reluctant, but resigned. After having had a ‘mask’ made in preparation for this procedure however, I was asked by my oncologist how I was feeling. There is no doubt that I am managing much better than I have over recent weeks. I can now walk unaided although a little unsteadily, dance a little, socialise a little and bother to dress in clothes other than my dressing gown. I’m also eating a lot and maintaining my weight.

In the Lakes with Ali

In the Lakes with Ali

It may be that I’m simply adjusting to my situation and therefore coping better, but it’s also possible, albeit only slightly, that the hormone drug Tamoxifen to which I returned  4 weeks ago after 15 years could be having an impact. If so, I must be extremely grateful to a friend of mine who told me she’d returned to Tamoxifen after 23 years and that it was helping her. In view of this, I requested to go back on it also, and my oncologist agreed. We won’t know for sure that it’s working until I have a tumour marker reading taken in a fortnight’s time… just when I’d decided not to bother with tumour markers and scans! In view of the unexpected improvements, we agreed to defer the radiotherapy until then. As with all these drugs, if they do happen to work, they only work for a limited period which is all the more reason to appreciate every moment of a totally unanticipated reprieve.

On the ferry to Bowness

On the ferry to Bowness

Whatever the outcome of the blood tests, I am once again appreciating making short term plans and generally waking up to face each new day with a sense of positivity. The best thing is that I can keep my hair appointment for next week!

Last night I had the most wonderful evening dancing with Ken and Erika at Woodkirk, and meeting old friends. Virtually all the old dance crowd was there and I just felt as if I’d been transported back to my happiest tango times where I wouldn’t have missed my weekly Woodkirk class for anything. It was like being part of a great big, happy family. I feel so fortunate, in view of my limitations and the unexpected twists and turns I live with, that I was able to fully participate in something so very, very special. Thanks Ken and Erika… and all the lovely dancers, for taking me back to a golden moment of my life.

Beautiful, tranquil Loch Linney in Fort William

Beautiful, tranquil Loch Linney in Fort William

On Tuesday, I had a long consultation with my oncologist who explained the scan of my skull to me. It was clear from all the scan photos that my skull has many, many lesions in it… just like all the other bones in my fragile body. She was lovely and patient as she explained my options to me, Alex and Sue. I sense a developing empathy and some sadness too on the part of the oncologists as my condition develops. I may be wrong, but I’m guessing they’re thinking ‘There but for the grace of God…’

 

Essentials for our journey:)))

Essentials for our journey:)))

The problems I face with the lack of sensation in my cheek and jaw, and my inability to steady myself when standing or walking are due to tumours at the base of my skull pinching the nerves that are located there (in this case, the 5th, 7th and 8th nerves). I can either leave the situation as it is and the chances are that it will deteriorate further leaving me even more greatly debilitated, or I can have five sessions of radiotherapy to the base of the skull that that will, of necessity, also include the bottom part of my brain. Apparently though, I shouldn’t have side effects other than temporary sleepiness and permanent hair loss to the sides and base of my head. My oncologist, who has lovely long, thick hair seemed to see this as the greatest problem for me to contend with.

 

Yet again, I am faced with an ‘impossible’ choice, and I don’t know

Brilliant pianist at St Pancras Station

Brilliant pianist at St Pancras Station

what to do. My indecision led me to barter for another four weeks and to agree to return to clinic on the 10th November. I know that I couldn’t cope with bits of hair here and there, and I really don’t fancy a wig. My friends who wear wigs tell me they’re very hot and prickly. My very good friend (who lost all her hair permanently due to chemotherapy) really liked her wigs but would only wear them outside the house or to answer the door, due to the heat and prickliness. Sue suggested I look into hair extensions. I know nothing about them, but they must be worth investigating, especially as my oncologist seemed pretty sure that radiotherapy would not only improve my quality of life in the short term, but could also slow down the disease in the skull.

 

Naughty Susie!

Naughty Susie!

Ah well… in the meantime, while in the process of decision making, I have planned another short break away with Ali. This will be the third time we have rented a cottage in the Lake District at the beginning of November. The colours are surprisingly beautiful even as late as November, and as long as I have his arm to lean on we will be able to enjoy some great walking. We are staying at the southern-most tip of Coniston Water, which is one of the most peaceful and tranquil parts we’ve stayed in. If I choose to have the radiotherapy, I’ll have an enforced period of recovery, so special memories and photos become even more meaningful.

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The excitement for Sue and I of actually going on our special sleeper journey from Euston station, and then on to the Jacobite steam train which would be waiting in Fort William station for us, was almost too great… especially in view of all my medical misfortunes over the past couple of months. Anyway, the time had come and we were ready. We set off from Leeds to King’s Cross on Monday evening, with our rucksacks, magazines and enough snacks to tide us over the next four months, never mind days!

On our way

On our way

Our journey to Euston went like a dream, completely uneventfully which was just what we needed as each leg of the journey was totally dependent on what went before. When we got to Euston station however, at what was really our bed-time, in the cold, dark and wet, we looked in absolute horror at the sign plastered across platform 13, which read ‘Cancelled’. Eventually, we were directed along with the other disgruntled and deeply unhappy passengers to speak to the stewards on platform 13. We learned that our sleeper was going nowhere that night as the gales in the Lakes had brought down the overhead cables at Penrith, and that was the end of the matter.

Sunset over Loch Linney, across the road from our B&B in Fort William

Sunset over Loch Linney, across the road from our B&B in Fort William

After some discussion, we decided to sleep in our static sleeper berth, and we agreed to be woken at 4:30am to catch a Virgin train to Glasgow the next day, changing at Glasgow to travel up to Fort William by Scotrail. Our biggest concern was whether we would be able to change our first class tickets for the Jacobite Steam train to the following day, but it was a chance we would have to take. Thankfully, half way to Glasgow we learned that our bookings on the steam train would be honoured and that our tickets would be changed. The relief we felt was tremendous.

In our Harry Potter style carriage on the Jacobite steam train

In our Harry Potter style carriage on the Jacobite steam train

After this devastating start to our trip of a lifetime, we had the most wonderful journey imaginable. The steam train journey from Fort William to Mallaig is agreed to be the most beautiful in the world, and we would definitely concur. The scenery was utterly breath-taking and the weather on Wednesday (when we travelled) was just glorious beyond all expectations. The lochs, mountains and forests were beautiful beyond description. At Mallaig, we filled up on deliciously fresh fish and chips in readiness for our return and the long night ahead. Thankfully, we’d booked a really lovely B&B on the Tuesday night which gave us the opportunity to have a great sleep, hot showers and an excellent breakfast.

Sue, climbing up on to her bed in the berth of our sleeper

Sue, climbing up on to her bed in the berth of our sleeper

Our return sleeper on the Wednesday night left Fort William on time, so we had the proper sleeper experience back to Euston, arriving early Thursday morning. We enjoyed sitting in the lounge car having a nip of brandy (courtesy of Sue!) with our Earl Grey teas before tucking up into our tiny little berth and attempting to sleep to the motion of the train. It’s not quite all it’s cracked up to be with the bumping, the banging and literally no room to swing a cat, but it was a fantastic experience all the same.

Luckily, timings all went to plan on our return, and we enjoyed our breakfast in St Pancras station listening to a fabulous pianist, before boarding our train home at King’s Cross.

Today I had a scan of my skull, so that on Tuesday my oncologist can plan radiotherapy to my skull. The jury is still out with regards to what treatment I will accept. I’m kind of getting used to being wobbly and I just feel so exuberantly full of life. I just don’t want to jeopardise what I have. I’ll keep an open mind though, and listen to the advice given.

Holding on…

With Sue in the ever changing, ever beautiful Gledhow Valley Woods

With Sue in the ever changing, ever beautiful Gledhow Valley Woods

Well, at least I have some answers to my questions now. The brain scan showed that the cancer is not in my brain or brain lining, which is very good news. Having said that, I still have major, debilitating problems in that I cannot keep my balance and I cannot feel the right side of my face. The scan confirmed that there is a large tumour at the base of my skull pinching specific nerves that affect my balance and another tumour on the left side of my skull that affects the facial sensations on the right side of my face.

2014 09 28_1017The oncologist has requested a CT scan of my skull in order to plan radiotherapy which could relieve pressure on the nerves. Apparently, radiotherapy for the face has no side effects other than a sore gum for a couple of weeks, but if I agree to have it to the base of my skull it will have to include part of my brain. I’m much more concerned and reluctant to have this done, as even the smallest changes to my brain will impact in some ways. In this case, I would become permanently very tired and I would be less able to concentrate. Thankfully, I am able to see my wonderful hospice consultant to discuss all the implications. The one thing I always wanted was to be ‘me’ until the end of my life.

It is now only just over a week before I go on my trip of a lifetime with my sister, to Fort William on the sleeper train and

Standing on a carpet of autumn leaves

Standing on a carpet of autumn leaves

then on to Mallaig on the Jacobite steam train (also known as the Hogwart’s Express). It seemed such a wonderful plan when we first made it and it now seems like a mammoth undertaking. I have decided however, to take the plunge and to go for it.  My sister may be tiny but she’s incredibly wiry and she will make sure that I’m safe from beginning to end. The hospice has also offered me a compact wheelchair, should I feel the need to take it with me. Undoubtedly, it will be wonderful to see all that glorious scenery at this time of year, so I’m sure the trip will be worth the struggle.

Morning coffee in the Mill Kitchen

Morning coffee in the Mill Kitchen

On Saturday, we had a lovely morning visiting Sunnybank Mill in Farsley. It is the most wonderful art space and the mill is being developed along the lines of Saltaire. The mill space itself is vast, and it is being developed in stages. The three areas that are up and running fantastically well are the main art gallery, a huge working studio space for artists who ‘push the boundaries’ and the Mill Kitchen, a café/eatery which provides the most delicious food seven days a week. The gallery and studio space are run by a very competent woman called Jane who has a really good eye for what will work in the spaces. She is very keen for my mum to hold an exhibition in the main gallery in Spring 2015, and Ali is also hoping to exhibit there.

Morning light pouring  into the Mill Kitchen

Morning light pouring into the Mill Kitchen

Despite all the challenges of my new situation, I have continued to enjoy these glorious autumnal days, with the people I love. I need, want and expect less and less as my situation deteriorates, and I appreciate everything more and more. Sometimes, I am so excited about waking up to another wonderful day that I can hardly sleep. I feel that the sand is slipping fast through my timer, and I am just not ready for it all to slip away. I will keep holding on.

Still surviving

Moon over Comares

Moon over Comares

Having just had my MRI brain scan at Bexley, I’m now feeling a little more relaxed than I have for over a month now. It has been such a strange and difficult month for me. One of my greatest fears was being helpless and housebound, and that’s exactly what’s happened… virtually overnight. On Monday 11th August I had a good day. In fact it was so good I told my oncologist that I would no longer be attending Bexley oncology appointments on a regular basis, but that I would put myself in the care of St. Gemma’s Hospice. Bexley is primarily for the administration and monitoring of cancer medication, which I had decided against. I remember going home and cooking enthusiastically for Erika and Ann and then ending the evening with some great tango at Burley.

Delicious, healthy lunch with Erika and Ken

Delicious, healthy lunch with Erika and Ken

Then Tuesday came and I woke up feeling so very strange… light headed and unable to focus or keep my balance. In addition the right hand side of my face, particularly the lower part, felt anaesthetised. From then on, things have progressively deteriorated to the point where I am unable to leave the house unaided. I lurch around the house from wall to wall, but I’m actually getting better at it with practise and familiarity. My jaw is so numb that I inadvertently chew through it, and then it hurts like hell!

2014 09 10_0921

I have remained throughout in the wonderful care of the staff at St. Gemma’s, who look after me with such humanity and skill. Either Alexander takes me for my appointments or they make home visits. Their professional view is that a large tumour at the base of my skull is pressing heavily on nerves which affect my balance and that tumours on the left side of my skull are affecting the feeling in the right hand side of my face. Of course, the cancer could have spread to my brain, but I’m desperately hoping not. Only today’s brain scan will show, for certain.

Preparing for the milonga

Preparing for the milonga

Say 'Cheese'!

Say ‘Cheese’!

Although I dreaded this kind of thing happening to me, where I am housebound and dependent, I have been amazed at my capacity to readjust. As human beings, we are incredible. Even though my world has narrowed right down, I find myself so very thankful for what could seem to some to be the smallest of things. Alexander usually walks me to the café and back each day, and it feels so special and wonderful to be out in the village with him. He’s such brilliant company and I know he loves to spend time with me too. I’m so enjoying feeling the balmy September sunshine on my skin. I have always tried to avoid comparing what I could once do with what I now cannot do, and instead I focus on the things that still bring me joy. For me, it’s the only way to survive the horror of my disease.

I did it!

On our way for tapas in Colmenar!

On our way for tapas in Colmenar!

What an emotional day! I had up until 10 am yesterday morning to cancel my flight to Malaga, with Jet2. After almost a month of being unable to walk to the end of my drive independently, the prospect of going alone on an aeroplane felt like a mammoth undertaking.

After seven days on steroids however, and two knockout sleeping pills on Monday night that gave me seven hours sleep, I decided to take the plunge. I cannot speak highly enough of the care and consideration of both Jet2, and ‘Airport Special Assistance’ who provided wheelchair assistance from the beginning to the end of my journey from Leeds to Malaga.

I knew that if I could only manage the airport and flight I would be fine, with Erika and Ken waiting for me at the other end. Emotionally, the hardest part for me was the long, slow walk down to seat 19E at the back of the plane, with hundreds of eyes on me. I had to fight back the tears, especially as two friends of mine, by coincidence, were also on the same flight.

Something changed for me however, the moment I sat in my seat. The sunshine flooded the plane and I was overcome by a feeling of total serenity as I sat there waiting for take-off. It was as if I had entered another zone. I was achieving something that had seemed unthinkable, and I felt so good about it. Different clichés and sayings came to mind, including ‘Sieze the Day!’ and ‘We don’t regret the things we do, just the things we don’t‘.

Unlike my many previous flights, where I have focused solely on arrival and destination, I completely relaxed into the experience of flying and of being on the journey. In that moment I felt utterly blessed to be able to make this journey and to be staying with two of the kindest and loveliest friends anyone could wish for.

I do have to thank my incredibly supportive palliative consultant, who after discussing the possible pitfalls of making this journey, got inside my head and said he believed a few days in Malaga would do me lot better than the bone marrow infusion I was due this week. As he said, ‘That will wait’.

Day 1

Migration of the Andalucian booted and short-toed eagles

Migration of the Andalucian booted and short-toed eagles

Today I witnessed the migration of hundreds of eagles as they circled and gathered over our villa for their annual flight down to Africa. I have always wanted to see this incredible sight, and I felt my spirit soar and fly with them.

I am also being treated to the best TLC, with fresh figs and almonds straight from the trees, home-made cakes and bread and organic porridge with fresh, local honey. How very, very lucky am !?

Cruel ‘C’

Cruel ‘C’

 

You are a killer

 

With stealth and purpose

You are slowly but surely

Closing your grip around my throat,

Sliding your knife between my ribs –

So slowly, so surely, so insidiously.

You operate with stealth,

With trickery and with such precision.

 

Have you worked out your plan for completion?

Will you creep behind my eyes and distort my sight?

Will you crawl into my spine and break my bones?

Will you sneak into my brain and leave me dazed and confused?

 

I feel a little nauseous today – vomited earlier

My head is spinning — struggling to stand

My body aches – shooting pains.

Is it a sign, or is it my fevered imagination

Which you now have firmly in your grip

Alongside my broken body?

 

Do what you will with my body,

You will never break my spirit.

I am what I am and I always will be.

I am the loving mother, daughter, sister, auntie, cousin, friend

That I ever was.

I am the dancer melting to music in my partner’s arms.

I am a brightly shining star lighting up my tiny corner of the world.

 

When you have done your very worst,

When there is nothing left of me for you,

Then I will rise and brightly burn again

For all eternity – in the name of love.

 

Painting by Alexander Coy

Painting by Alexander Coy

The Power of Art

Lunch time

Lunch time

Earlier this week, Ali and I made the journey for a two night stay in London to see the Matisse Cut Outs and the Malevich exhibitions at Tate Modern. I have to say that although I was extremely unwell during this period, the trip was worth every moment of effort.

The Matisse was a joyful and celebratory exhibition, but it was the

'Futuristic' Alex

‘Futuristic’ Alex

Malevich exhibition that hugely affected us both. It chartered his progress and development through the whole of his career in art, and it was truly incredible and humbling to witness how he kept pushing himself constantly through the very many phases of his art. I felt tears pricking behind my eyes when I saw his early figurative works which were deeply spiritual in content, but I wept openly in front of ‘The Black Square’ with its white border. For me, facing my own mortality as I am, I felt totally connected to the human spirit of the artist searching for meaning by bringing things down to the barest minimum… Being and Nothingness. This is surely the power of art,  the power to connect at the very deepest levels.

Inside Southward Cathedral

Inside Southward Cathedral

We left the Malevich exhibition feeling drained of all emotion and wandered into Southwark Cathedral. I wept there too as the light flooded through the stained glass windows into the very beautiful church. For the first time I lit a candle for myself and said a prayer for me

‘Please give me more time to complete my life’s work, but if I must go soon, let me go with courage, dignity, peace and love.’

I couldn’t help comparing my experience at the Malevich exhibition with my experience in the cathedral. The church was awesome in its beauty and size, and I could see how people could find their own sense of peace there… but for me, the story of an artist relentlessly pursuing the deepest meaning of human existence through his art work had a much more profound impact on me. I’m so glad I was able to have both experiences.

Art is, and has always been, a tremendously important part of my life… and it is for so

Matisse and Malevich

Matisse and Malevich

many of us. I feel the same about poetry. I remember being given an incredible anthology called Voices when I was fourteen and embarking on GCSE literature. So many of the poems in it (I still have a copy) were chosen to have a visceral impact, and they did. From that point on, I learned that a few chosen words could shake and shape my world. How can any government demote the status of the arts when they form the future of generations to come?

 

Since writing this post, I read the following quote that seems to express perfectly what I felt in front of The Black Square:

Schopenhauer had a theory of art that said, in effect: bad art copies, good art creates, great art transcends. And by “transcends” he meant “transcends the subject and object duality”. What all great art has in common, he said, is its ability to pull the sensitive viewer out of him or herself and into the art, so completely that the separate-self sense disappears entirely, and for at least a brief moment one is ushered into nondual and timeless awareness. Great art, in other words, is mystical, no matter what its actual content.

Ken Wilber, Grace and Grit 1991

 

Peace of mind

 

Fields of gold

Fields of gold

What a meandering journey this is. I have reached yet another new level of acceptance, a level that is helping me to find greater peace than ever. Having tried and given up the chemotherapy, I feel so very relaxed and ready to embrace everything within my gift… and that’s how the rest of my life feels to me now, a gift.

 

Harvest time

Harvest time

I know full well that the cancer could take my life at any time, but while ever my pain can be managed and I can eat, drink, dance, move around and breathe easily, then I am fortunate, and I have decided that I will embrace all the things I can do with renewed enthusiasm and gratitude.

 

With hindsight, I see that for a whole year I have allowed myself to be caught up in the dilemma of feeling that I perhaps should try chemotherapy, while every fibre of my being has cried out against it. There is no place for ‘should’. The relief I now feel is tremendous, as if a weight has been lifted from me.

 

Prior to trying the chemotherapy I had become much weaker and I had stopped eating, not because I felt physically sick but because I was allowing myself to become despondent through anxiety. I was making myself weaker than necessary through not eating and not exercising. Becoming physically ill in this way is such a clear example of the mind, body and spirit link. I have learned a lesson, and I now feel that I have walked through a dark tunnel to emerge into the sunshine… and it feels good.

 

Eccup Whin nature reserve

Eccup Whin nature reserve

There are still some things I have left to do on my ‘Living List’, not with a sense of panic or desperation, but because I’m lucky enough to be able to. These are things that I want to do and see, not for the sake of it, but in order to share some special and relatively simple experiences with dear friends and family members while I am still well enough to do so.

 

Run-HaystackThe trip I am particularly looking forward to is with my sister, taking an overnight sleeper from London Euston at 9:30 pm to arrive in Fort William at 9:15 am, then riding the Jacobite steam train to Mallaig. It is meant to be one of the world’s most beautiful train journeys. We used to travel to Scotland every year as a family until Susie and I became truculent teenagers, trying my father’s patience to the limit. Going back to Scotland, especially in this way, should be a truly memorable and magical journey for us both, and it will also close a circle for me.

 

 

Ali and me

Ali and me

Last Tuesday’s ‘You and Yours’ programme, hosted by Winifred Robinson on R4, was dedicated to the subject of Assisted Dying… topical because of the new Bill being debated on the 18th July. The views expressed by listeners were heartfelt on either side of the debate, and the personal stories very moving.

 

I have always been interested in this subject, long before I was diagnosed with a terminal illness, but it now has a very specific relevance to me. I now find myself in a situation that would virtually guarantee me admittance to the Dignitas House, subject to written verification of my medical condition and two assessments by Swiss doctors to check that I’m of sound mind.

 

Recently, I heard the story of someone I had met once briefly, choosing to end her life in the Dignitas House. This lady had had a very similar medical condition to me, and had eventually decided to take this final step, travelling to Switzerland with her three grown up children. I was greatly reassured to hear that she enjoyed her last few days with her children in Switzerland, before peacefully leaving this life. Thankfully, there is no longer the risk of accompanying family members being under threat of prosecution. Her story gave me food for thought.

 

Interestingly, but understandingly, far more people sign up to Dignitas than ever actually use it. It provides a ‘safety blanket’ for many people, in simply knowing there is an escape route from the misery of a painful, protracted and undignified death, should they want it. Apparently, once they have signed up as a member of the organisation, many people then go on to live quite happily for longer than expected due to the mental relief of having an escape route, or they go on to die peacefully at home or in a hospice.

 

There are practical difficulties to choosing this route of course, such as being well enough to travel independently yet being ill enough to be certain that the time is right to let go. Having felt relatively weak for some time now, yet continuing to enjoy life as I do, I can understand how tricky this might be. Planning anything becomes increasingly difficult.

 

Right now I am once again at peace, having been advised to stop the chemotherapy after five days of debilitating nausea and vomiting. I feel that a huge weight has been lifted from me and that I am once again able to breathe, laugh, dance, sing… and most importantly, to eat! I know that my life expectancy is limited, but after twice trying to take the toxins (last summer and now again, just recently), I feel quite sure that I wish to spend whatever time I have left shining brightly as myself, rather than  living toxically in the shadows for however much longer the chemo might give me.

By the far soutern end of Coniston Water

By the far southern end of Coniston Water

Today, in consultation with my oncologist, I made my decision. On Wednesday I will go for my pre-assessment in preparation to begin chemotherapy.

 

Coniston Water

Coniston Water

I didn’t really need telling that the cancer is becoming increasingly active. I just knew. Although the tumour marker remained stable, albeit pretty high, another indicator showed a marked increase in cancer activity in either the bones or liver, and my oncologist suspects it to be the liver. In this case there seems little to lose in trying the chemotherapy.

 

In the summer time 2014

In the summer time 2014

I have been feeling progressively unwell over the past month, to the point where even facing the day is a real effort… from forcing myself to eat breakfast, taking a mountain of tablets, knowing that I will become extremely tired at some point in the day, feeling permanently nauseous and being unable to plan for even a low key social event including dancing… it’s all beginning to take its toll.

 

Alex, wearing his 'Be Present' T-shirt... what a find!

Alex, wearing his ‘Be Present’ T-shirt… what a find!

I’ve ensured that I have some lovely, special times over the past month, but each one has cost me a little more dearly. A few weeks ago, Sue and I went on our special bus trip to Ripon. We had a really lovely day, as always, but it was just that bit too exhausting for me. Ali and I had a few days in the Lakes which were very special, but I found both travelling and eating difficult which impacted on us both. I have had a couple of lovely dance experiences recently but the length of time I have needed for recovery is increasing to the point where I have to weigh up whether the cost of dancing is worth the joy I get from it.

 

I know that I must simply summon all my resources on waking, and use my energy sparingly in order to get through each day. It does

Magical forest walk by Coniston Water

Magical forest walk by Coniston Water

take the term ‘living in the present’ to a whole new level. At the moment the sun is shining and the garden is glorious so there is great joy to be had from just ‘being’, especially outdoors. All the same, it’s quite difficult when people ask me what my plans are and I have to say ‘Oh, plans are not something I can make any more’. There is inevitably a sense of loss and grieving.

 

Happy family birthday meal for my wonderful Mum.

Happy family birthday meal for my wonderful Mum.

I don’t want to feel sorry for myself. I was always determined that I wouldn’t. It does get harder though as my condition deteriorates. It can be a tremendous challenge to carry on.

St Gemma's exquisite garden

Summer garden

The Alhambra Gardens at Roundhay

The Alhambra Gardens at Roundhay

Hospital appointments come and go, and life goes on. Last week I went to Bexley for my latest CT scan results. It showed several new tumours in the liver, and a thickening of the pleura (chest wall membrane) which suggests the cancer attempting to move in the direction of the lung. It wasn’t good news, but neither was it unexpected. At the moment I’m still going ‘freestyle’ as Ali describes it i.e. without any treatment for the actual cancer. It’s admittedly a little scary, especially when my oncologist said that without chemotherapy I could have as little as 2-3 months to live. (He also said I could live up to 2 years, but in all likelihood that somewhere between the 2 month and 2 year mark was most realistic.) The following day, while I was waiting for my monthly bone marrow infusion at Bexley, I met a woman who was on her fifth cycle of the oral chemo that has been strongly suggested to me. She wasn’t experiencing any side effects other than extreme exhaustion at times, and her tumour marker had dropped, showing that it was effective in slowing her cancer down. This was more of a recommendation than anything the medics could say to persuade me, and has given me something to think about before my next appointment on the 21st July.

A secret grassy dome within St Gemm's garden walls

A secret grassy dome within St Gemm’s garden walls

Another thing that gave me pause for thought recently was a trial (currently held in Manchester and Newcastle) for a radical new cancer treatment that acts directly on the immune system itself, therefore helping the body to heal itself from within. I recall a man with Stage 4 (i.e. incurable) melanoma in his lungs and bones, being in the headlines not long ago because his cancer had been cured. This is previously unheard of… too late for me and those like me, I’m sure, but still worth questioning the oncologists about, especially with so little to lose. My inspirational friend Sue Keir and I used to say to one another, ‘We’re not dying, we’re living.’ This view was strongly reinforced recently by my hospice nurse who said ‘It would be simply wrong to describe you as dying, Sara. You’re so busy living.’ It is true, and she should know, but it was still lovely to hear her say it.

 

The award winning 'Alhambra' gardens at St Gemma's

The award winning ‘Alhambra’ gardens at St Gemma’s

Summer light in St Gemma's garden

Summer light in St Gemma’s garden

Thanks to you all for your warm wishes of support over the past week when I was in St Gemma’s hospice. They meant a great deal to me and I hugely appreciated every one of them.

 

Over the week I was there, I had my symptoms of intense head pain alleviated, and I gradually regained some strength.

 

The gorgeous 'Chelsea' gardens at Roundhay, with Sue

The gorgeous ‘Chelsea’ gardens at Roundhay, with Sue

What an amazing place St Gemma’s is, and what a privileged experience I had! As beneficial as any physical help I received, I gained a tremendous amount of comfort from being in such a caring place, in beautiful and tranquil surroundings. It is an incredibly contemplative place, where I was able to spend time thinking and talking with caring professionals about spiritual matters. Death, such a taboo subject in the Western world generally, is not shied away from at all. I guess that wouldn’t suit some people, but it felt such a relief to me to be able to talk openly about death, in a safe and loving space.

 

It wasn’t all deathly serious though! I shared a ward with two wonderful women.

At Roundhay, with Sue

At Roundhay, with Sue

Mavis, in the bed opposite me prided herself on her sense of humour and she was thrilled to have someone to share it with. Approaching death doesn’t change a person at all. Mavis was still the sharp, witty woman she’d always been. We laughed a lot together. In the bed next to me was Val, a lovely lady who was simply waiting to die. She remained gracious to everyone who interacted with her, and always reciprocated with a smile that lit her whole face up. She was inspirational to me in terms of her acceptance and her sweet nature, right to the very end. We were three very different women but being in the hospice was a great leveller. Love and kindness are all that matter at the end of the day.

 

St Gemma's exquisite garden

St Gemma’s exquisite garden

This week I have a CT scan so that the oncologists can see what’s happening in my liver. As ever, I’m struggling with the chemotherapy option which will no doubt be raised once again at my consultation next Monday, and I’m not really any clearer despite my week of contemplation. The hospice was wonderful though, in being able to offer the options and offering me the opportunity to talk openly about possible consequences. The hospital tends to take a much more narrow view, assuming that the patient will accept every treatment available. I realise that no one can help with this one though… the choice is mine, and mine alone.

2014 05 21_0581

Beautiful, beautiful blue…

So it was a blip, my oncologist told me. Regardless, I enjoyed my 19 days between appointments to the absolute max. I was intrigued myself, by the reaction I had three weeks ago, to being told  that my tumour marker had plummeted. At that moment, I suddenly felt light and free and that my life was once again full of hope and possibilities. It did occur to me that my results may have got muddled with someone-else’s and that my reaction could have been due to a placebo effect. Whatever the case, the joy of those two and a half weeks was real for me.

Selfie, at Temple Newsam

‘Selfie’, at Temple Newsam

I so wish I could give to myself that priceless gift of freedom, but sadly I can’t. I can’t, because I live in a permanent state of grief and grieving. I don’t allow that grief to dominate my life, but it’s always there, just beneath the surface. It’s there at all times and in all places, both for me and for those who love me, and we cannot escape it. Well meaning friends and family sometimes reflect in a spirit of support that we’re all ‘in the same boat’ and of course to one extent we are. On the other hand, it’s very different to be living in the face of death the whole time.

Rhodedendrons in full flower at Temple Newsam

Rhododendrons in full flower at Temple Newsam

Sadly, last Monday I was told that my tumour marker had jumped up by a couple of hundred, back to almost 1000. That’s relatively high and certainly enough of a jump for my medical team to want me to give the chemotherapy a go. I explained however, that because I feel relatively well right now, I simply cannot bear the thought of making myself ill by having chemotherapy. I just don’t want to do it. It doesn’t make sense to me. I lost the whole of the last spring and summer due to being on medication, and I just can’t bear the thought of losing another precious spring and summer. I’m relishing every moment of May. My kind, humane oncologist said he understood my reasoning and he gave me his blessing on the proviso that I have a CT scan in a month’s time so that he can see what’s happening in my liver. I guess he just doesn’t want me to ‘miss the boat’ by procrastinating. A consummate professional, he wants to keep me alive for as long as possible.

Laburnam tree, dripping golden threads in evening light

Laburnum tree, dripping golden threads in the evening light

I don’t know. There is no right or wrong in terms of how each of us deals with treating a terminal illness such as this. It’s so very personal, and I suppose we just have to do what feels right for us at the time. I have been told to be alert to the signs of liver malfunction, and the thought of that happening is terrifying. My liver function is normal at the moment but the liver is a very large organ that can compensate for abnormalities, for some time.

For the moment, I will continue to take every opportunity life

Flamenco magic at Mint cafe with Flamenco Diez

Flamenco magic at Mint cafe with the excellent Flamenco Diez

offers me, and to appreciate the incredible beauty of nature at this time of year. My senses are more alert than ever to the rich, vibrant colours of the trees and flowers, the gentle warmth of these balmy spring evenings, the smell of freshly cut grass and wild flowers and the sounds of summer gathering momentum. Every single day I am thankful… thankful, and just a little bit sad.

Beautiful spring blossom in Chapel Allerton Park

Beautiful spring blossom in Chapel Allerton Park

'Hi Sue, love the flowers behind you!'

‘Hi Sue, love the flowers behind you!’

So there I was this Wednesday afternoon, waiting with my mum and sister for my oncology appointment at Bexley, feeling like a lamb being led to slaughter. This was meant to be it… the start of a new and unwelcome phase where my life would have to fit into the cancer (due to starting chemotherapy), and not the other way around as it has been until now.

My holiday to Marrakech had been my last holiday fling before chemotherapy, and on Monday night at Burley I danced as if it was my last night of dancing! I was mentally as prepared as I could be for starting chemotherapy this week. I was emotionally preparing for challenges of life on poison, but it still always felt wrong for me.

Scrumptious cherry blossom

Scrumptious cherry blossom

Then, as we sat waiting for instructions to see the chemotherapy nurse, my oncologist said that we’d had some very unusual and confusing blood results… in a good way. The three of us sat in near disbelief when he explained that my tumour marker had inexplicably and totally unexpectedly dropped by around 250. It could of course be a blip. I don’t care, I have a reprieve! I asked hesitantly if that meant I didn’t need to go onto the chemo today, and he said with a smile of cameraderie, that he’d be happier if I didn’t… that he’d rather see my results in  three weeks’ time to try to understand what’s going on.

I feel so elated. If it’s merely a blip, I celebrate the blip. I welcome three weeks more of freedom to enjoy this beautiful spring, to dance when I can, and maybe even… to have one more adventure:))

And who knows, perhaps there’s a little bit of something magical happening too. I’m daring to hope once again…

Marrakech April 2014_0343

The Marjorelle Gardens

Thanks to all of you who wished me a good break in Marrakech. I had a fantastic time. Marrakech was romantic, mysterious and edgy… and we loved it!

Marrakech April 2014_0391

Mint tea in the riad

I feel so fortunate that I had such a wonderful experience. The labyrinth of narrow, winding back streets so reminded me of the back streets of Kadhimiya (in Baghdad) where my dad was brought up. Yet behind one of the plain wooden doors was the incredibly beautiful, traditional riad that we stayed in, with its courtyard…cushions all around the sides where we sipped mint tea under the clear, blue sky above us and the towering palm trees looming over us. If we so chose, we could relax on the rooftop terrace and look across to the snow covered peaks of the Atlas Mountains.

Marrakech April 2014_0399

With Amanda in the courtyard of our riad

 

 

The colours of Marrakech in spring time are jewel like. We arrived in a thunder storm, but although that was the only rain we had, it meant that the greens were a vibrant emerald and the abundant blossoms were in shades of the brightest fuchsia pink, rich purples and vivid reds and oranges against a cloudless, turquoise sky. Then there is the dusky, deep rose colour of the clay which is the colour of the city. Against these natural colours, the Moroccans have a preference for a most stunning blue, ‘Marjorelle’ blue (somewhere between cobalt and aquamarine) that they use for all the accessories from pots to tablecloths.

 

Our street in the labrynth of winding, narrow streets, with the stunning riad behind a plain door

Our street, in the labyrinth of winding, narrow streets of the old medina

From the courtyard in our riad

From the courtyard in our riad

 

 

In the evenings, we wandered through the narrow alleyways of the many and various souks to the Jemaa El Fna, the main square in Marrakech which transforms as the sun begins to set, into a huge circus of magic, mystery and entertainment. I preferred not to wander on the ground amid the street sellers and cobras, but to watch from the magic unfold from the safety of a roof-top terrace.

In the Atlas Mountains

In the Atlas Mountains

In the Atlas Mountains

In the Atlas Mountains

 

 

 

 

 

 

 

 

 

 

 

 

On our final day we took a trip to the Atlas Mountains, stopping at a traditional Berber house to see Moroccan mint tea made the traditional way, and we also stopped at an Argan oil cooperative for divorced and widowed women. Such women would have a particularly difficult life in a traditional Islamic society like this one. I particularly wanted to buy some Argan cream for my feet and hands in preparation for the chemotherapy that is now imminent. Let’s hope the magic of the Argan kernels work for me

The mountains themselves were lush and green, irrigated by the clearest running mountain water that I’ve ever seen. Village life was in full flow, with adults and children going about their daily business in the mountains. In fact, our taxi driver told us that he aspired to move into the mountains himself in order to escape the hustle, bustle and influences of the city. It really was an incredible and unforgettable experience for both me and my hugely supportive friend Amanda, to whom I am extremely grateful for travelling with me.

Month of horrors

Sue and me

Sue and me

I’ll begin with the good news for those of you who have been following my journey over the past month. On Wednesday evening, Professor Perren phoned me at home and said ‘Go to Marrakech on Monday, have a fantastic time and spend all your money in the souk!’ What he was actually saying was that the brain scan I’d had earlier in the day had shown no cancer activity in either brain or skull, despite some indications that brain metastases could have been the reason behind my recently wonky mouth!

Mopping up the flood

Mopping up the flood

My relief was beyond words, despite the fact that the phone call came as we were trying to deal with a mega flood in our kitchen due to a burst pipe in the loo. Following an explosion upstairs, water came cascading through the kitchen ceiling until we actually found the stopcock about 25 minutes later. I’m sure you can imagine the mess, but I thought a photo may help to illustrate the scene…

My month of horrors began with a tooth extraction and the worry of osteonecrosis. It was followed shortly after by a liver biopsy that showed the cancer was still highly oestrogen receptive (potentially a good thing because we may be able to return to hormone treatments once the chemotherapy has been tried in order to get the cancer back under control). There was then a concern about brain metastases, resulting in the MRI brain scan… all this within one month. It has at times, felt almost too much to bear, especially as the liver biopsy and brain scan procedures both felt like forms of mediaeval torture. More than anything though, the main worry and stress has come from having one trauma after another, without any time to come to terms with things and without any sense of resolution.

I have been reminded recently of two recurring nightmares I had as a child. The first is where I run and run and run until I realise with horror that I have run off ‘the edge’, that there is no way back, that I am in free-fall and will die. The second is where I am running around a quadrangle of long, dark, narrow corridors to escape from a sinister, evil figure who will eventually catch me and have no mercy. Despite the fact that I am running for my life, he manages to appear at the other end of every corridor and I have no way out. Whereas as a child, I learned that in reality I would always be safe from my nightmares, the opposite now seems true. As a young child, I used to dread sleep for what my dreams would bring. Now sleep brings such relief and peace. Perhaps, as when a child, I will be safe from my nightmares, and there is nothing to fear after all.

 

Family coffee in Waterstones

Family coffee in Waterstones with Alex, Mum, Briony (and Sue taking the photo)

In spite of everything, I’ve had some precious moments this month including lovely days out with special people. Nothing is ever more special than spending time with my wonderful family and friends. Now I will look forward to travelling to Marrakech with a lovely, trusted friend, and for five days I will put my worries in that virtual envelope and leave it on a high shelf, not to be touched until my return.

 

Through the Hide

Through the Hide

Today I had a yearning to visit a Hide. Since first visiting South Africa eleven years ago, I have been fascinated by Hides. The whole notion of sitting very quietly and patiently on one side of a ‘window’ and watching a secret and inaccessible world on the other side immediately struck me as being incredibly magical and spiritual.

Through the other side

Through the other side

Waiting in the Hide renders time as we understand it, totally meaningless. Sitting there in silence just watching nature (for what can be a very long time) is surely as meditative as anything can be. For me, sitting in the Hide is a wonderful form of escapism. It also seems incredibly safe and reassuring in a world where nothing feels safe anymore… there where everything is just as it is, without pretence. I also love the idea of ‘the other side’ being in existence, even though it is out of reach. Still, it is there, and I can go visit whenever I want to.

Jut to update those friends who are not on FB, I saw my oncologist a week last Monday. He confirmed that my medication has not been working and suggested that we needed an immediate change of direction. He saw the priorities as clearing the infection from my tooth (now done through extraction) and carrying out a liver biopsy to see whether the nature of the cancer has changed from oestrogen receptive (biopsy carried out yesterday). He then expects me to begin chemotherapy to slow the progression of the cancer. I feel sick at the thought, but I am prepared to try an oral chemo that appears to be manageable for many people. My greatest hope is that it will be effective for a while and give me another period of stability where I can continue to carry on as ‘normal’, and not as a dying, cancer patient.

Pet therapy with Mr Stoddy!

Pet therapy with Mr Stoddy!

My biggest dilemma will come if the cancer has changed its nature because then my oncologist will want me to have a more vicious form of intravenous chemotherapy. I’m not interested. It’s not how I want to live out the rest of my life, so I’ll face that hurdle as and when I need to. I realise it all sounds very dramatic, and I suppose it is. Thankfully, my wonderful family and friends support me in all my decisions and they respect my wishes, for which I am grateful beyond words. A situation like mine brings out such love in everyone, and shines a light on the things that truly matter.

I’m so glad that I can go to the Hides in Adel woods any time I want, and just sit peacefully in those spaces for a while… watching life on the other side of the window, and allowing time to stand still.

Ilkley in Spring for Sue's birthday 11.03.2014

Ilkley in Spring for Sue’s birthday 11.03.2014

Why we Dance by MariJo Moore

To dance is to pray

To pray is to heal

To heal is to give

To give is to live

To live is to dance

My sister gave me a copy of this poem for Christmas, and although it’s simple, it resonated for me. More and more, my life is about dancing, healing, living and loving.

When I saw my psycho-oncologist (for counselling) last week and told her about the many things I have spent my time

A place to paint

A place to paint

doing over this difficult and uncertain month, including painting, listening to live music, dancing, cooking and meditating, she commented that I have been enriching my life. ‘Enriching’… just a word, but it meant a great deal to me. It gave me a sense of power to feel that I was capable of doing something meaningful and positive in a situation where I can often feel powerless.

A peaceful place

A peaceful place

We discussed the difference between activities such as painting and dancing (which I described as being highly meditative), and pure and simple meditation itself. She pointed out that the painting and the dancing are also expressive, which they are. Meditation on the other hand, simply allows the mind to be still. I think this is something I really need to develop, because occasionally my mind is turbulent with uncontrollable thoughts that plague and torment.

Tomorrow I find out how I am, based on the results of a recent CT scan and blood tests. Hopefully, I will be given a new medical plan that will give me a renewed sense of focus and direction. Who knows? … But I will continue to enrich my life, and to live each day as if it was my last. I will greet each spring morning as a strong woman ready to face the world and whatever the day might bring.

One-way street

Sara and Briony in Handpicked Hall

Sara and Briony in Handpicked Hall

I’m feeling rather vulnerable at the moment… in No-Man’s Land. Those of us in my situation generally agree that it’s this uncertainty that’s so difficult to live with. We’re all acutely aware of the path we travel… going down a dark and winding one-way street without really knowing how close to the end we actually are. Meeting others going down this street brings some comfort, but also sorrow because our hearts go out to one another.

At the moment my tumour marker continues to rise rapidly and with frightening regularity. ‘We’ are giving the Everolimus a little longer to work, but not much. The next set of blood results together with the CT scan results (all due on March 17th) will determine my next course of treatment.

The oncologist mentioned a new possibility of taking cells from the tumour in my liver in order to ascertain whether the cancer is still oestrogen driven or whether it has changed its nature, as it may have done. Although this is quite a scary prospect, the suggestion gave me renewed hope. I’m just glad not to be entirely written off.

A recent additional worry for me is the fear of developing osteonecrosis (death of the bone) in my jaw. Apparently, this nasty condition can be a side effect resulting from the bone marrow infusion that I have had monthly, since my diagnosis almost five years ago. I have been told that I require surgery in my mouth and that it will be risky. The dental consultant said he would need to say his prayers before performing the surgery! It would have been easy for me to give up on hearing this, but I won’t. Incredibly, most of us manage to do what we have to do in this life, and somehow we find the strength.

Ana Luisa and Mike performing in Handpicked Hall

Ana Luisa and Mike performing in Handpicked Hall

On a more uplifting note, I have had two wonderful experiences this weekend. On Friday afternoon, I went with Alex and Briony to Handpicked Hall (in the Grand Arcade) to listen to Ana Luisa (from the band Mestisa) and Mike (flamenco guitarist) play and sing absolutely beautifully in the Café Columbiana. It was very intimate with just a few of us listening but we could have been in Southern

Cousins in Handpicked Hall

Cousins in Handpicked Hall

Spain or in Latin America with the music playing and the sunshine pouring through the huge glass panes onto the burnt orange walls of the café. Ana Luisa and Mike are next performing (accompanying two flamenco dancers), on Saturday 8th March in Wakefield Cathedral for an event marking International Women’s Day.

My second special experience was staying with one of my oldest friends (and her husband) in Carlisle. The train journey from Skipton to Carlisle, in glorious sunshine, was breath-taking and so good for the soul. Staying with special friends was also good for the soul and lifted my spirit. These are the things that really matter for me.

Settle to Carlisle line

Settle to Carlisle line

When I am well again, I would love to travel for days and even weeks by train… anywhere. There is something about enjoying every moment of the journey, without worrying too much about the destination, that really appeals… perhaps a metaphor for life.

I would like to say a big ‘Thank You’ to my lovely niece, Briony Wilks, for giving her support and spending so much time making and editing this 20 minute video of me cooking one of my favourite rice dishes. (The video is easy to follow in short chunks.)

I have chosen to make this video because many people, including those in perfect health, are interested in my approach to nutrition, and my diet.

As most of you know, I changed my eating habits as soon as I was diagnosed with secondary cancer, in order to help myself as much as possible. I have no idea whether my eating habits have any effect on the cancer cells but I do know that I look and feel as well as possible under the circumstances, and I do put this down to the food I eat… as well as the dancing of course!

Basically, I eat masses of vegetables and I rarely throw any away as I am usually able to incorporate ’leftovers’ into some kind of tasty dish. I no longer eat meat although I still eat fish, and I have cut dairy out of my diet altogether. I drink lots of filtered water and lots of green tea. I avoid alcohol altogether as it is now recognised as stimulating oestrogen, which is something I must avoid at all costs (with my cancer being driven by oestrogen).

I begin almost every dish with onions, turmeric and black pepper fried gently in extra virgin olive oil. The turmeric is known to have significant healing properties. It is more easily absorbed when used with black pepper, so cooking it with black pepper in extra virgin olive oil is my way of having my daily dose of turmeric. I may then typically add crushed garlic, grated ginger and finely chopped red chilli. This often forms the basis to a whole range of dishes, but whatever shape the dish takes, at least I know that I’m benefitting from the widely acknowledged health giving properties of the turmeric and other spices.

I hope you enjoy this video. My next clip will be showing how to make variations of the basmati rice (pre-cooked in this recipe) which accompanies most of my meals. I cook it the way my parents cook it, which is the Iranian style. It’s absolutely delicious.

One day at a time…

Chatting to Dr Kate Granger at her 'On the Bright Side' event at Bexley last Thursday

Chatting to Dr Kate Granger at her ‘On the Bright Side’ event at Bexley last Thursday

Since I last posted on Jan 1st 2014, it’s been yet another tricky time for me. Although I was delighted at managing the side effects of Everolimus on the 5mg dose (as opposed to the 10mg dose I took last summer) pretty well, my tumour marker has kept rocketing up, really quite alarmingly.

The oncologists always react in a sort of neutral mode, but they seemed very keen for me to increase the dose, initially to a 7.5 mg. I debated this change, still rather nervous after my extreme reaction to the drug last summer, but I eventually agreed. When I arrived at Pharmacy to collect the 7,5mg tablets however, I was told that Bexley don’t stock either 7.5mg or 2.5mg tablets and my instructions were therefore to take a 10mg tablet, followed by a 5mg tablet on alternate days.

I really was anxious at this, and at first I simply refused. I wanted more information. After speaking to the clinical nurse specialist who had consulted with two oncologists however, I was persuaded to try the new regime, the theory being that 7.5+7.5 equates to 10+5. If only it was that simple! My astute son, who also had reservations on my behalf, pointed out that once my body had been hit with the 10mg dose, it wouldn’t know that it was only getting 5mg the next day, and the damage could be done by then… as it was.

On the first day of taking a 10mg tablet, I began to develop a mouth ulcer that was reminiscent of the one that prevented me eating, drinking or talking last summer. It began to spread wide and deep into my gum making anything mouth related excrutiatingly painful. The drug also caused me to develop a dental abscess which led to a sleepless night and which demanded immediate attention. After a day spent in the acute oncology ward at Bexley last Wednesday, I chose to stop taking the 10mg tablet immediately.

My one wish is that my medical team would take the detailed records I have kept since the beginning of being on Everolimus, and make use of them for other patients. When a new drug is so little known, it seems crazy not to learn more. There are so few of us on the drug (around 5 or 6 at any one time) that each case seems to me to be worthy of a study.

My tumour marker may be shooting up without apparent cause, but when my day to day life is affected as it has been, making everything from a simple stroll for a coffee with friends to a night’s dancing and a simple five mile walk really challenging, then it just isn’t worth it to me. I guess a few more blood results and a CT scan in the near future will determine what really is going on with the cancer and the next course of medication for me. Regrettably, I feel it must be chemotherapy.

On a more positive note, I was delighted and honoured last Thursday, to meet Dr Kate Granger. She is an inspirational young hospital doctor (still at work) who is living with terminal cancer. She is currently on chemotherapy and is extremely poorly. Nevertheless, she got herself out of bed last Thursday to host her ‘On the Bright Side’ event at Bexley. If you are interested in reading about my journey, then I am sure you will want to read her blog too. Just type her name into Google and ‘follow’ her.

‘May your trails be crooked, winding, dangerous – leading to the most amazing views. May your mountains rise into – and above – the clouds.’

Edward Abbey – Environmentalist

A great time in London, with Ali

A great time in London, with Ali

I hardly dare write this for fear of jinxing the ‘magic’, but I know that all those of you who follow my blog will be interested to hear that not only is my body tolerating the daily dose of poison, but that I am feeling exceedingly well.

After massive deliberations over Christmas and after much research, I opted to return to (a reduced dose of) Everolimus, the drug that made me so ill in the summer. This was against the general view of oncologists who didn’t want to see me suffering or re-hospitalised. The decision was also made with great trepidation on my part. The reason that I did eventually opt for it was that it felt like a potential life-line, one that I simply could not allow to slip away untried. If I rejected it this time, the opportunity would be missed for ever.

A great time in London, with Ali

A great time in London, with Ali

I am now on Day 10 of the drug and I feel fantastically well, as if I’ve been given a whole new lease of life. I am daring to hope it’s because the drug is doing the job it’s intended to do in tricking the cancer into sleeping for a while. Logically, that should result in me feeling properly well again, as I do at the moment. This may not actually be the case of course, and only the tumour marker readings over the next couple of months will show for sure. What I do realise now that I feel so good though, is how ‘strange’ cancer makes me feel in general. Although I always look well and generally say that I am well, it’s a modified kind of wellness that’s never quite what it should be.

A brilliant time in Ripon, with my cheeky little sister (taking the p...!)

A brilliant time in Ripon, with my cheeky little sister (taking the p…!)

Right now however, I feel that my energy is boundless and that I am unstoppable… I feel able to do anything. I immediately connected with the quote at the beginning of this post because it expresses the immense joy I feel at having walked the dangerous and precarious path for so long, to suddenly see the amazing view in front of me.

Showing Sue how to pose...naturally, of course

Showing Sue how to pose…naturally, of course

Nothing is for very long with my condition, but how very, very grateful I shall be if I can enjoy another spring and summer without living in the constant shadow of demons… not just for my sake of course, but also for those who love me. From not daring to make any plans at all two weeks ago, my head is now filled with the things I can do in the space of however long the cancer remains asleep, and I am now myself again. I must just hope the cancer isn’t fooling me into thinking it’s sleeping. I know it’s capable of playing very cruel tricks itself at times.

Harrogate Masquerade Ball - December 2013

Harrogate Masquerade Ball – December 2013

Today, I received a lovely review of a friend’s year in calendar form. She’s had a tough year, but what the calendar review shows is what a courageous woman she is in overcoming a traumatic start to her year in 2013. It also shows how very strong she was in making the most of each moment, and ending up having a great year to look back on.

When I replaced my 2013 calendar with my new 2014 calendar this morning, I too looked back on the year I have had. It was a very significant year for me, in that the cancer spread from my bones to my liver in April, and that changed everything really. I also endured the most terrible side effects from cancer medication throughout the whole of the summer. Despite those difficulties, I, like my friend, was able to see what a wonderful year I have had.

I spent the first four months of 2013 prior to my CT scan results, travelling and spending precious time with loved ones and dear friends. I intuitively knew that I needed to prioritise the things I did, and I was not at all surprised therefore when I returned from my travels to learn about the shadow on my liver. Following a horrendous summer of cancer treatment, I used a ‘window of opportunity’ in November when I was between treatments, to fly to Buenos Aires to spend two weeks dancing tango with Erika and Ken. It was a wonderful experience, but it also felt like a significant achievement for me.

I used to be so excited at the start of a new year. A new year has always signified for me the promise of being able to do things differently and better, and the anticipation of new possibilities that come with the unknown. The very idea of New Year always filled me with optimism and joy… it felt like a new start. I loved to plan for my new year, for the new activities I would try, for the new journeys I would go on and for the ways I would try to improve my life and my relationships. I guess the New Year always felt like a blank piece of paper in front of me waiting for me to make my mark on it…so very, very exciting and so full of promise.

The start of 2014 doesn’t quite feel like that to me though. I’m at the beginning of a new phase in my illness, so everything depends on my health and my ability to manage not only the illness, but also the treatment and side effects. On the 6th Jan, I must opt for a course of treatment in an attempt to keep the cancer from spreading too quickly. I have no idea how my body will respond to either the cancer or the treatments, and consequently I am unable to make any plans at all. It’s OK though… I think I have eventually adjusted to this situation, both emotionally and mentally. My personal philosophy has always been to be thankful and appreciative of the things I have, and I still have so much to be grateful for.

Although I am unable to realistically make plans, I am still able to have intentions at the start of this New Year. More than anything, I want to turn the blogs I have written up to this point, all eighty of them, into a book. My technical adviser Lloyd, clever man that he is, has assured me there is a way of fulfilling my intention and I know he will help me to achieve my wish. From my initial diagnosis of secondary cancer in May 2009 up until December 2013 seems to me to be one distinct phase in my cancer journey, one that has now come to a natural end, and it therefore feels a perfect time to transfer my musings over the past four and a half years into a book that may help others.

Without wishing to sound fatalistic, the next phase of my cancer journey which begins this month, is likely to be far more challenging than what has gone before. Like everyone else, my future is unknown, but mine is more limited and restricted than for most. This is simply because of the length of time I have been living with this deadly disease, and the fact that the disease is progressive in nature. Although I don’t know exactly how my year will pan out, there will undoubtedly be great highs in additions to the inevitable lows. Therefore, alongside the occasional moments of dread, I remain intrigued and optimistic about the possibilities that lie ahead in 2014.

I suspect that while ever there is breath in my body and the hope of life, I will not lose that sense of anticipation and joy about the magic and mystery that is life itself.

I wish all my family and friends a peaceful and joyful New Year. Your continued support in following my blog helps me tremendously.

Un Abrazo Christmas Ball 2013

Un Abrazo Christmas Ball 2013

I recognise myself using a new tone in this blog entry, but I have always pledged to be honest, so I will continue.

Last Monday was meant to be Decision Day at Bexley. I always knew that on my return from Argentina, I would be faced with the hard fact of my progressing cancer, and that I would be asked to make a decision.

My choices were:

1) Faslodex – the final hormone treatment on offer to me, involving painful injections into the muscles in my bottom, with very little chance of effectiveness;

2) Everolimus (to work alongside the Exemestane that I still take) – a return to the targeted therapy that made me so very ill in the summer, but on a reduced dose;

3) Capecitibine – an oral chemotherapy (with side effects that may seriously affect my dancing) with a 50 – 60% chance of effectiveness;

4) No action – (my own suggestion) until the symptoms become too much for me to bear

With my oncologist’s blessing, I left the hospital without making a decision, despite my original intention to begin a new treatment there and then. We wished each other a happy Christmas and she told me to enjoy my relative good health while I still have it. I told her that I enjoy every single moment of my good health, to the max!

I left hospital with an overwhelming sense of relief at having postponed any decision making (yet again), but then I began to feel extremely sick on Wednesday. My palliative care nurse sent me for blood tests without delay in case the sickness was due to calcium leaking into the blood, which would have meant immediate hospitalisation. Fortunately, this was not the case, but living with cancer always means that any illness might be related to it. Hopefully, and in all likelihood, it’s a regular winter vomiting virus that anyone could have. I still feel queasy and uncomfortably ‘strange’ in a way I find impossible to define, but I am still determined to make the most of this Christmas period with my incredible family and my dear, dear friends. Time enough, when I return to hospital on the 6th Jan 2014, to ‘face the music’ then.

Laughing on the - tango - dance floor (with Stephen Twist)

Laughter on the dance floor (with Stephen Twist)

I have to admit it’s hard though, when everyone around me is making their plans for 2014 and further ahead. I am fully aware that those plans may never materialise, but living for our hopes and dreams is how we find the will and motivation to go on. Never mind people talking about their travel plans for the forthcoming year, I have even found it hard when sports commentators talk about the next Olympics or the next World Cup. I just quietly disengage both mentally and emotionally, because I’m pretty sure these things simply don’t bear direct relevance to me. I never intended to live my life as if I’d already died, so I will never totally disengage from the hopes and dreams that the lives of others are built upon, but it still remains a challenge… particularly as the sand slips ever more quickly through my timer. It simply feels too soon, and I guess it always will.

The joy of living

Late spring in Buenos Aires 2013

Late spring in Buenos Aires 2013

I’m so glad I did it! I’m thankfully back home safely after two incredible weeks in Buenos Aires. It all seems like a bit of a dream now and the time passed by like a whirlwind, but I was definitely there, dancing through the afternoons and dancing again into the early hours of each morning. I’m so grateful to all those people that gave me the confidence to take the risk and make a dream come true. I’m also incredibly grateful to my two friends Erika and Ken, who were prepared for us to go on holiday together and to have the time of our lives.

El Affronte, playing their bandoneons with passion!

El Affronte, playing with passion!

I will always remember the jacaranda trees with their profusion of glorious, purple blossoms lining the endless avenues, and the coffee shops where we would sit with the most delicious, freshly squeezed orange juice or café con leche and watch the world go by. I will also remember the dance halls that I’ve

Erika and Ken, dancing to El Affronte

Erika and Ken, dancing to El Affronte

seen so many times in the movies, where I leaned into my leaders as they led me around the floor to the most beautiful tango music. Above all, I will remember the live orchestras playing in front of me, and the powerful, haunting sounds of the bandoneon running through my body like electricity.

Despite my return flight being cancelled and arriving home over 36 hours after my due arrival time, all I wanted to do on my return was dance. It was wonderful to go to my regular milonga at the New Burley Club on the Monday night and dance in my new Comme il Faut shoes! Erika and I had great fun making the obligatory visits to the shoe shops in Buenos Aires, but the best thing for me was finding that my new shoes were so very, very comfortable on the dance floor and that I could dance in them for hours, while feeling a little more glamorous than usual.

Erika and me... waiting for the cabaceo in Cafeteria Ideal

Erika and me… waiting for the cabaceo in Confiteria Ideal

The day after my return I had a hospital appointment and CT scan results. I learned that I don’t have any new metastases which is just fantastic news, but the tumour in my liver has grown however, and my tumour marker has increased quite a lot, so I now need to make a decision with regards new treatment. Horrible, horrible… especially as I’ve felt so well on holiday and didn’t have the time to think about cancer at all really. It was like being in a parallel universe, and going away was worth it for simply suspending time and reality in that way.

View from the apartment at dusk

View from the apartment at dusk

After the oncologist gave me some facts about my options I felt slightly tearful and somewhat stranded, as the decision must be made and I alone could make it. How wonderful it would be if Leeds had a Maggie’s centre where I could have gone to sit in a comfortable space with a knowledgeable, caring person who could help me make such a big decision. At the end of our consultation I took the plunge and asked how much time I would have left if I chose not to have any treatment. The oncologist said it was a good question, but that she couldn’t give an answer as cancer behaves unpredictably.

At times such as this, I remember the words of Maggie Jencks, who said that the joy of living must not be lost through the fear of dying… so very true.

Early morning mists over the mountains viewed from Casa Media Luna

Early morning mists over the mountains viewed from Casa Media Luna

My stay with Erika and Ken was just heavenly. I was so well looked after, and I also enjoyed glorious weather. Lying down on a sunbed for my afternoon siesta with the cloudscape ever changing above me gave me a feeling of such tranquility and serenity. Something about the endless sky and being surrounded by those magnificent, ancient mountains made me feel, at that moment in time, as if nothing could ever touch or harm me… that I was eternal as they were, that I was completely at one with my natural surroundings. It reminded me of the verse often read at funerals:

I am a thousand winds that blow
I am the diamond glint on snow
I am the sunlight on ripened grain
I am the gentle, autumn rain

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I don’t have the words to express how special my time in the Lakes with Alexander was… we were both so aware of how precious our time together was. Sometimes it rained and sometimes we had bursts of sunshine, but it simply didn’t matter. We walked in the rain and got happily soaking wet. After the rain, the trees appeared as a mass of glistening, burnt orange, and the greens were rich and lush. Surprisingly perhaps, the Lake District in November is so exquisitely beautiful.

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Tomorrow, Ken and Erika fly to Buenos Aires and on Monday I fly out to join them. What an adventure! I’m a little anxious, but I know that once I’m met by Ken at the airport in BA, I’ll be absolutely fine. Dancing tango with Ken and Erika in Buenos Aires is something of a tango dream. The day after I get back from Argentina, I have an oncology appointment with the results of a full body CT scan that includes the brain. Therefore, more than ever I know that I must embrace this opportunity and relish each moment… bitter-sweet as that can sometimes seem.

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Sunshine after the rain… on the breathtakingly beautiful road to Keswick, from Ambleside.

Dancing on air

Dancing joy

Dancing joy

When I came home from dancing at Burley on Monday evening, I felt as if my heart bursting with joy from the sheer exhilaration of dance. Amazingly, I danced for three hours consecutively on Sunday followed by another hour and a half on Monday.

On Tuesday morning, when Alex asked me how I felt, as he always does, I explained that I felt as if I was floating on air and that I could live forever! He said ‘How wonderful! You have found something that could make such a difference to other people. You should blog it Mum’.

In step

In step

I wish I could share the magic, because dancing lifts my spirits beyond words. It feels more powerful than any medicine, and makes life in that moment seem something ‘other’. When I dance with the right partner, I feel as if I’m in a parallel universe…weightless, care-free and connected to the whole universe. It’s a quite incredible feeling.

For the past fortnight I have been feeling just as well as I did before I took the Everolimus, and I cannot describe how wonderful that is. We all tend to forget how bad things were when they go back to ‘normal’ after a catastrophe or crisis, but I can’t, because the crisis is ever present. Despite feeling fantastic and being able to dance once more, my tumour marker had begun to rise again after stopping the medication, so I suspect hard decisions will have to be made in the not too distant future.

In the meantime however, I have added the trip of a lifetime to my short term plans. In November I will join Erika and Ken in Buenos Aires for a fortnight’s dancing! I can hardly believe I’ve done it, but I have. I know there are risks but right now I feel on top of the world to be able to live my dream, and I couldn’t be with two lovelier, more caring people. How very, very lucky am I?!

In the joy of the moment I sometimes wish the moment could last forever, but then I wouldn’t be the person I have now become. I hope my spirit will continue to fly when I no longer can.

Dance, dance, dance!

Dance, dance, dance!

‘Just do it!’

Sara (who is "living with secondary breast cancer") in a photo taken by her sister, Sue during their trip to Scarborough and Whitby, October 2013

On the promenade in Scarborough

When I talked to Kay (my specialist palliative care nurse) about my desire to travel, she was very encouraging. ‘Do it now’, was her advice. Although I had a momentary internal wobble when she said this, I recovered immediately and decided that I really liked her advice, and would follow it!

I have just returned from the first of my travel adventures… a magical weekend on the North East coast with my sister, Susie. On Saturday morning we drove in leisurely fashion to Scarborough, stopping en-route in Malton to scour the charity shops and to have a cup of tea at the wonderful Kingfisher café. It was such a wonderful thing to see our splendid Yorkshire landscape beginning to change from green to golden in the autumn sunshine.

As I relaxed in the passenger seat just witnessing the beauty of the season, I realised my thoughts on autumn had changed. Up until now it had always made me feel quite sad… I had always seen autumn as’ the beginning of the end’. I suddenly no longer felt that way. I saw autumn as if through new eyes… a time that should be appreciated and savoured to the full, particularly precious for its fleeting but powerful beauty before everything dies, as we all know it must.

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Sue suggested we travel between the north and south bays of Scarborough on the open top bus (No 109), and it was magical. The cloudscape was endlessly fascinating as it changed continuously, with the sea reflecting its hues and shades of grey, green and blue.

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My sister, Susie

The following day, after an early morning stroll in Peaseholm Park, we drove over the moors to Whitby and spent a few hugely enjoyable hours there before heading off, making a final stop at Yorkshire Lavender before the final lap of the journey home. Lavender tea was a real discovery for us both. It’s not actually tea, just culinary lavender steeped in boiling water… absolutely delicious. The lavender tastes exactly as it smells and left us feeling as if we’d had a relaxing treatment… quite incredible!

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So where next? I have taken the plunge and booked a few days away in Colmenar with Erika and Ken, and I’ve also booked a long weekend in a Lakeland cottage with Ali. ‘Just do it!’ said Kay. And I am.