Sylvia's news

SYLVIA'S FUNERAL SERVICE 21st November 2013

noreply@blogger.com (Annabel) — Sun, 01 Dec 2013 22:10:00 +0000

Sylvia left us detailed notes on what she wanted for her funeral and she told us she had enjoyed planning it. We added the round “ Dona Nobis Pacem” as we wanted some singing in the service. Other music was performed by a string quartet from Lawyers Music; the players were colleagues of Sylvia's for many years. Sylvia's notes are copied below in italics.

“What is dying?” by Bishop Brent

Read by Sylvia's school friend Catherine Lippa

In the days after my mother died in 2000, while my father, sisters and I were discussing what to include in her funeral, Belinda’s mother-in-law Marjorie Kembery suggested this reading. We all immediately liked it, and in the service it was read by my godmother, Margaret Macdonald. I wasn’t sure at first about including the same reading for my own funeral, but on reflection I rather like the association.

I am standing upon that foreshore. A ship at my side spreads her white sails to the morning breeze and starts for the blue ocean. She is an object of beauty and strength, and I stand and watch her until at length she hangs like a speck of white cloud just where the sea and sky come down to mingle with each other. Then someone at my side says, “there! She’s gone!”

Gone where? Gone from my sight, that is all: she is just as large in mast and spar and hull as ever she was when she left my side; just as able to bear her load of living freight to the place of her destination. Her diminished size is in me, not in her.

And just at that moment when someone at my side says, “there! She’s gone!” there are other eyes watching her coming, and other voices ready to take up the glad shout, “here she comes!”

And that is dying.

“Tant de belles choses” sung by, and words by, Françoise Hardy, music by Pascale Daniel and Alain Lubrano

http://philipclemo.files.wordpress.com/2013/12/tant-de-belles-choses.mp3

I came across this song, bizarrely enough, on a flight to Central Asia in 2009. I’d got to the airport (typically) late and flustered, and once I’d collapsed onto the plane, I searched through the airline’s entertainment system to try and de-stress. This song worked like magic, and once I returned home I bought the album of the same name, mainly for this one song. After my diagnosis I found the idea of still having many beautiful things ahead of me, despite my fears and worries, extremely comforting and inspiring, and I listened to it very frequently, especially during my treatments at the Herzog clinic. And I did indeed have many more beautiful experiences!

I couldn’t find an English translation of the words, so this is my own attempt – undoubtedly imperfect, but it describes what sense I personally made of this song.

Même s’il me faut lâcher ta main

Sans pouvoir te dire “à demain”

Rien ne défera jamais nos liens…

Même s’il me faut aller plus loin

Couper des ponts, changer de train

L’amour est plus fort que le chagrin…

L’amour qui fait battre nos coeurs

Va sublimer cette douleur,

Transformer le plomb en or

Tu as tant de belles choses à vivre encore…

Tu verras au bout du tunnel

Se dessiner un arc-en-ciel

Et refleurir les lilas,

Tu as tant de belles choses devant toi…

Même si je veille d’une autre rive

Quoi que tu fasses, quoi qu’il t’arrive,

Je serai avec toi comme autrefois…

Même si tu pars à la dérive

L’état de grâce, les forces vives

Reviendront plus vite que tu ne crois…

Dans l’espace qui lie ciel et terre

Se cache le plus grand des mystères

Comme la brume voilant l‘aurore

Il y a tant de belles choses que tu ignores…

La foi qui abat les montagnes

La source blanche dans ton âme

Penses-y quand tu t’endors

L’amour est plus fort que la mort…

Dans le temps qui lie ciel et terre

Se cache le plus beau des mystères

Penses-y quand tu t’endors

L’amour est plus fort que la mort…

Even if I must let go of your hand

Without being able to say, “see you tomorrow”

Nothing will ever undo our ties…

Even if I must go away,

Cast myself off, take another track,

Love is stronger than grief…

The love that makes our hearts beat

Will sublimate this pain

And transform lead into gold;

You have so many beautiful things still to live for…

You will see at the end of the tunnel

Emerges a rainbow

And the lilacs bloom again;

You have so many beautiful things ahead of you…

Even if I am watching from another shore

No matter what you do, no matter what happens,

I will be with you as before.

Even if you drift away from a state of grace

Your life force will return before you know it.

Within the space which binds heaven and earth

Hides the greatest mystery.

Just as the mist obscures the dawn

There are so many beautiful things you don’t yet know…

The faith which moves mountains,

The white spring within your soul;

Ponder as you fall asleep:

Love is stronger than death

Within the moment which binds heaven and earth

Hides the most beautiful mystery.

Ponder as you fall asleep:

Love is stronger than death.

Eulogy by Annabel Kapp

Eulogy by John Kapp

“Lament” sung by John Kapp

Words by Wilfred Wilson Gibson and set to music by Reginald Kapp in 1919.

Accompanied by Sue Harvey and recorded by Philip Clemo.

http://philipclemo.files.wordpress.com/2013/12/john-song-mix-normalized.mp3

We who are left, how shall we look again
Happily on the sun or feel the rain
Without remembering how they who went
Ungrudgingly and spent
Their lives for us loved, too, the sun and rain?

A bird among the rain-wet lilac sings—
But we, how shall we turn to little things
And listen to the birds and winds and streams
Made holy by their dreams,
Nor feel the heart-break in the heart of things?

Eulogy by work colleague Sheila Sprigge

The following 2 readings don’t have any huge significance for me although they express a sentiment which I like.

“The comfort and sweetness of peace” - Helen Steiner Rice

Read by Belinda Kembery, nee Kapp

After the clouds, the sunshine,

After the winter, the spring,

After the shower, the rainbow,

For life is a changeable thing,

After the night, the morning,

Bidding all darkness cease,

After life’s cares and sorrows,

The comfort and sweetness of peace.

Eulogy by Frances Reynolds

Eulogy by Jacqie Carr Taylor

“Beim Schlafengehen” from Four Last Songs by Richard Strauss

This is one of my favourite works, and one which I played twice with Lawyers Music orchestra, in 1997 and 2008. I’m not sure I did justice to the violin solo but it’s one that I hugely enjoyed having the opportunity to play. To prepare for playing the solo I researched all the recordings I could find, and this is the version which, for me, best captured the poignancy and soaring beauty of this wonderful piece. It was at that time – long before I really believed my death would ever happen - that I decided I wanted this played at my funeral.

Staatskapelle Dresden, conducted by Giuseppe Sinopoli, soloist Cheryl Struder

Text by Herman Hesse, 1948

http://philipclemo.files.wordpress.com/2013/12/03-beim-schlafengehen.mp3

Nun der Tag mich müd gemacht

Soll mein sehnliches Verlangen

Freundlich die gestirnte Nacht

Wie ein müdes Kind empfangen.

Hände, laßt von allem Tun

Stirn vergißt du alles Denken,

Alle meine Sinne nun

Wollen sich in Schlummer senken.

Und die Seele unbewacht

Will in freien Flügen schweben,

Um in Zauberkreis der Nacht

Tief und tausendfach zu leben.

“On going to sleep”

Now that I am wearied of the day,

My dearest longings shall

Welcome the starry night

Like a sleepy child.

Hands, cease your toiling,

Brow, forget all your thinking,

All my senses now

Yearn to sink into slumber.

And my unfettered soul

Will soar up freely, so that

In the enchanted circle of the night

It may live deeply and a thousandfold.

“Life Goes On” - Joyce Grenfell
Read by Sylvia's first cousin Amanda Foster

If I should go before the rest of you

Break not a flower

Nor inscribe a stone

Nor when I am gone

Speak in a Sunday voice

But be the usual selves

That I have known

Weep if you must

Parting is hell

But life goes on

So .... sing as well

Dona Nobis Pacem - Give Us Peace

All sing

“It’s a wonderful world”(sic) by Louis Armstrong
(to be played at the end of the service so that, hopefully, people leave with a smile on their faces)

http://philipclemo.files.wordpress.com/2013/12/02-what-a-wonderful-world.mp3

This song always left me feeling warmed and cheered. It expresses beautifully the sense of peacefulness and wellbeing which comes from appreciating the simple pleasures in life.

I see trees of green, red roses too

I see ‘em bloom for me and you

And I think to myself, what a wonderful world

I see skies of blue, clouds of white

Bright blessed days, dark sacred nights

And I think to myself, what a wonderful world

The colours of the rainbow so pretty in the sky

Are also on the faces of people going by

I see friends shaking hands, saying how do you do?

They’re really saying, “I love you”

I hear babies cry, I watch them grow

They’ll learn much more than I’ll ever know

And I think to myself, what a wonderful world

Yes, I think to myself - what a wonderful world…

For the burial:

Rabindranath Tagore:

My great-aunt, Auntie Joyce, was brought up in India, and was very familiar with the writings of Rabindranath Tagore. After her death I kept a book of his poems, and although I didn’t read them often they always felt like a link to her. When I came across this poem I was instantly drawn to it.

Say not in grief that she is no more

But say in thankfulness that she was;

A death is not the extinguishing of a light

But the putting out of a lamp

Because the dawn has come.

To finish service on upbeat note, I like the idea of a release of helium balloons (latex and biodegradable) – for example everyone (including children) to take one, be instructed to think of some quality precious to them (associated with me or not), eg love, compassion, peace, laughter, joy, kindness etc, then all go outside and in unison release the balloons and send out that quality into the world. Balloons maybe in blue and white only?

(Environmental facts – harvesting rubber for balloons does not harm trees and discourages deforestation. Balloons degrade in about the same amount of time as an oak leaf. During a balloon release, most balloons rise to an altitude of approximately 5 miles, where the balloon will either freeze or explode from the decreased air pressure, fragmenting into small pieces about the size of a penny, and falling back to earth where they decompose naturally. If ingested by animals, the rubber passes naturally through the digestive system without damaging the animal.)

Would like either burial plot or cremation plaque in Brompton Cemetery (my local area, a beautiful peaceful place, and people can visit easily if they want).

Wake

A collection of photos on projected screen, changing every 5-7 seconds, of good times, different stages of my life, happy memories. Photos of me alone plus with variety of friends and family, from as a baby/ young child up to adulthood. Selection is in folder on my computer in iPhoto, named “Assorted”.

Release of balloons from the terrace of the Pembroke, where the wake was held.

EULOGY : by Jacqie Carr Taylor

noreply@blogger.com (Annabel) — Mon, 25 Nov 2013 11:59:00 +0000

Friend Sylvia

I’d like to share a little of what it meant to have Sylvia as one of my closest friends over the past 19 years.

Through orchestra, skiing and beyond, Sylvia became a soul mate, a pillar, always there through the best of times as well as the worst of times.

She was a travelling companion, a confidante, a wise friend who loved me enough to help me examine life's challenges from the point of view of others, not just my own, helping me to move on.

I have so many memories to cherish:
Singing with friends gathered round a piano at an orchestra weekend.
Putting the world to rights on a ski lift or in a bar, or looking down on the beautiful people from her flat whilst chewing over brunch and the Saturday Guardian.
Finding the time to fit in my birthday every year; enjoying gatherings of her many, many friends for hers.
Trips to a ballet, opera, cinema or gallery.
Arguing about definitions and despairing at misplaced apostrophes.
Sharing photos and tales of far off places.
Dancing and drinking and, always, talking.
Bemoaning the lack of formal etiquette for how exactly you inform friends you have cancer.
Laughing at the absurdity of even the bleakest of times.

Sylvia being Sylvia came to question why we uniquely refer to treating cancer as a “battle”. She might not have agreed with it being called a fight, but no one could question her fighting spirit, getting every last precious drop out of life to the end.

And yet, despite the challenges thrown at her over these last 3 years, Friend Sylvia was always there to listen to my trivial woes, never losing patience, ever sympathetic, unfailingly generous and wise.

My life has been infinitely richer with Sylvia in it.

Friend Sylvia:
Inspiring, intrepid, defiantly intelligent.
Warm, witty, dependably wise.
Verbal sparring, salsa dancing.
All embracing.
Life enhancing

EULOGY: by Frances Reynolds from Lawyers' Music

noreply@blogger.com (Annabel) — Mon, 25 Nov 2013 11:54:00 +0000

SYLVIA – MUSICIAN, LEADER, COMMITTEE MEMBER!

The last time that I had a proper long chat with Sylvia was towards the end of September. I was about to start a new job and she was about to go off to Germany, so we’d got together to see a film. It was a suitably ‘Sylvia’ type film – it had subtitles – of course – and to tick a few more boxes, was set in the Middle East and handled the topic of women’s rights in a poignant, yet not too sentimental, way. Afterwards, over a cup of herbal tea, we had a wide-ranging conversation that inevitably centred in on Lawyers’ Music. As I’ve said, Sylvia was due to go to Germany and was agonising over how to break the news to our new conductor. That was a demonstration of what Lawyers’ Music meant to her. She was worried about – and cared about – in this particular case, the lack of continuity involved in having a temporary leader when she was away, whilst retaining a steely determination to lead the orchestra when she got back. Sadly, this time, she was unable to do so but many, if not all, of us recognise the poignancy of her passing away on the night of our orchestra concert, as we were playing in St James’s Piccadilly, a venue where she - we - had played in so many amazing concerts.

Sylvia was a member of Lawyers’ Music orchestra for 19 years and for 14 of those years she was its leader.

She was a wonderful musician – with an attention to detail and a refusal to gloss over the hard bits. She practised and knew the notes but music came naturally: one of her desk partners recalls playing a piece he had played many times before - Sylvia was sight-reading and played it extremely well. Afterwards, she modestly commented, “Well, it pretty much fell under the fingers…”. She took on tricky solos and played them with aplomb and had the admirable knack of remaining completely calm whilst playing anything. And this calmness had a wonderful effect on those around her: one of our conductors and soloists recalls those particularly nerve wracking moments just before going on the platform, which conductors and soloists share with the leader of the orchestra – he can think of no-one better than Sylvia with whom to have spent those moments.

As leader, she had a gentle but firm manner; a confidence, utter competence; a grace and an ease. Her smile and wit helped her deal superbly with the difficult decisions of who sits where and how to arrange the violin sections. But she paid attention to all sections. There is a fondly remembered customary post-concert exchange of: “Well led, Sylvia!”, to which she would reply, “Well followed, brass!”.

She was incredibly encouraging – generous with praise and with an unerring way of picking out one’s strong points. Another of her desk partners remembers a glow of pride when sensing the subtle shuffle of her shoe after he had played a solo. In addition, he also remembers her writing ‘page from hell’ at the top of a tricky scherzo! Above all, he remembers complete trust and mutual strength in the partnership of sharing a music stand for nearly 6 years. Her section always learnt a lot from Sylvia, whatever they were playing and got a lot more out of the music as a result. She was supportive and positive and believed in you.

And she came to the pub after rehearsals! That’s where many of us non-string players got to know her, initially. She was a great listener and always had an interesting perspective on things. We couldn’t quite persuade her of the benefits of drinking beer – she sadly remained almost uniquely among us, a lager drinker - but to make up for it, her crisp packet origami was second to none.

For it is not just for her musical abilities that we respected and admired her. For more years than she cared to remember, Sylvia was social secretary of Lawyers’ Music, welcoming new members, telling us where to go for post-concert drinks, organising residential weekends. It was her personal involvement with such events that made them a success – someone told me that they only went on the orchestra weekend away because she was going to be there: if Sylvia was up for it, it’d be fun.

Her knowledge of music helped the music committee select repertoire and her being a non-lawyer amongst many, many lawyers gave a fresh outlook to the running and organisation of Lawyers’ Music. On a frustrating day when committee emails were flying backwards and forwards at a rate of knots, on top of the work you were supposed to be doing, it was a breath of fresh air to read one from Sylvia. She really thought about the people and the issues and genuinely sought to resolve them in the best way possible. Her e-mails were superbly worded – measured, considered and diplomatic. Lawyers’ Music is a better organisation because of her.

Sylvia inspired huge affection amongst the members of Lawyers’ Music. She hardly missed a concert in all her 19 years and attended rehearsals and continued to take part in the running of the orchestra when she was not really feeling up to it and long after many of us would have given up. Her loyalty – though tested at times – remained strong.

Music was an important part of Sylvia’s life; and we are very, very privileged to have shared that with her for so many years.

EULOGY: from work colleague Sheila Sprigge

noreply@blogger.com (Annabel) — Mon, 25 Nov 2013 11:19:00 +0000

I first met Sylvia in 2004, the year we both joined the Mortimer Market Centre, a sexual health clinic specialising in clients affected by HIV. I liked her immediately. She had a warmth and an ease about her which everyone noticed, as well as a strong moral stance that always guided her work.

Sylvia came to Mortimer Market having qualified as a clinical psychologist, and completing a doctoral thesis on the topic of victims of torture. She had a strong desire to make psychology accessible to marginalised and disadvantaged groups. Much of her work at Mortimer Market was focused on supporting asylum seekers, many of whom had been through harrowing personal experiences.

Sylvia excelled in building relationships with these clients, and her commitment to them was evidenced in the psychological and practical help she gave to improve their situations. She was tireless in supporting clients in immigration tribunals and liaison with the Home Office. She made a huge difference to their lives.

Sylvia went on to chair a British Psychological Society conference focusing on working with vulnerable groups, and contributed significantly to the subsequent special edition of the professional journal “Clinical Psychologist' focusing on this topic. Another area that Sylvia played a leading role in at Mortimer Market was the development of systemic work - that is, therapeutic work focused on couples and families. She led our systemic clinic during its most successful period, and this work was nationally recognised, attracting psychologists and trainees from other services. Sylvia was an inspiration for the trainees she supervised, who left Mortimer Market with a confidence and commitment to their work, at the outset of their careers.

Nevertheless, despite taking her work seriously, Sylvia’s impact on Mortimer Market was not just in her work with clients. She had a brightness and lightness that affected the whole team and helped make the service an enjoyable place to work. Many of us particularly remember bouts of light-hearted and relaxed banter with Sylvia, which was often a welcome relief at the end of a long working day. Sylvia was interesting, fun and easy to confide in, and she built meaningful friendships with her colleagues, many of whom are here today.

Sylvia’s diagnosis was a huge shock for us, and her departure was a great loss to the service. The sadness felt by her colleagues was echoed by the concern showed by her clients. Sylvia remained thoroughly professional. She had a very short notice period of 2 weeks to wind down her work, and Sylvia took this task extremely seriously. She completed her client work, arranged handovers, and wrote detailed discharge reports so that work with her clients could continue with minimum disruption.

Shortly after this, I too left Mortimer Market, to focus on my young children. Our friendship grew deeper over this time, and our shared background in psychology helped us to confide in each other in relation to our life journeys over a period of great change for both of us. I was delighted when Sylvia agreed to become a godparent to my youngest child.

As many here will know, Sylvia showed a great openness about her ongoing struggle with cancer, without ever treating it as a sob-story. She quickly adjusted to her condition, and took huge personal responsibility for managing it. She showed the same level of commitment and focus to this task as she had previously shown towards her clients at work.

Despite this commitment to her own health, Sylvia never allowed cancer to dominate her life, or to become her sole concern. She continued to live life to the full, remaining interested in the world and generous to others. For me, what I particularly remember about this period is the many fun and relaxed times we had together, for instance having pub lunches or picnics, or visiting country houses.

Sylvia also continued to show great wisdom and remained a valued confidante for me. This is a real loss - even when composing this eulogy I found myself wishing I could phone her to get her views on what I should say.

My life has been hugely enriched by knowing Sylvia, and I know this is true of many of those around her. For me, it’s hard to believe she’s no longer here, but it remains impossible to forget her. She was a real inspiration, and she leaves behind a model of living life to the full, of rising above challenge, and of committing herself to making a meaningful difference.

Rest in peace Sylvia.

EULOGY: by John Kapp

noreply@blogger.com (Annabel) — Mon, 25 Nov 2013 11:16:00 +0000

Sylvia’s calling and life’s purpose was a healer and doctor, following a long family tradition of healers of mind and soul, represented here today by her cousins, and her aunt, my sister, Dr Elinor Kapp. Our mother, Dr Dorothy Kapp nee Wilkins came of a long line of missionaries in India. Healing requires the feeling expression of emotions, and letting them go.

Sylvia expressed emotions aptly by choosing words which touch, as in her blog, and the items in this service, and by feelingly performing music, leading the lawyers’ orchestra for over 15 years. One of our ancestors led the Musikverein orchestra in Vienna for over 40 years.

Sylvia accomplished an immense amount of healing in her short life, her illness and her death, and achieved her life’s purpose. This congregation honours her memory, and expresses our gratitude to her for that healing, so that we can let her go.

On behalf of Sylvia’s family I would like to thank you for your messages of condolence, and for being present with us here today.

The next item is a song called ‘Lament’, but Sylvia didn’t choose it, and neither did I. It chose me by ringing in my ears incessantly after she died. The words are a first world war poem, which my father, Reginald Kapp, set to music in 1919, that’s 94 years ago. I sang it a few times accompanied by him, but that was around 55 years ago. This is its first public performance.

My father never expressed any emotions in front of me, or said this, but I think that in this song, he was expressing and feeling the emotions of fighting on the British side, against his cousins and school friends on the German side, so that he could heal and let them go.

The words aptly expressed how I first felt on losing Sylvia. However, now, 12 days on, I too have let go of the emotions, and the feelings have transformed from sadness to gratitude for being alive, and not taking life for granted.

In a moment my son in law, Philip Clemo will play his recording of me singing it last Monday, but these are the words:

‘We who are left, how shall we look again,
Happily on the sun, or feel the rain,
Without remembering that they who went
Ungrudgingly, and spent
Their lives for us, loved too the sun and rain.

A bird among the rain wet lilac sings-
But we, how shall we turn to little things,
And listen to the birds, and winds and streams,
Made holy by their dreams.
Nor feel the heart break, feel the heart break in the heart of things.’

EULOGY: by Annabel Kapp

noreply@blogger.com (Annabel) — Mon, 25 Nov 2013 11:02:00 +0000

Sylvia was born in April 1970 at the time of the pear blossom – as our mother often said. That summer we moved to Hove, to a house with a large garden and a sandpit, climbing frame and trampolines made by our father. She would play happily and imaginatively on her own - a favourite game being Silverella and her 2 horrible bossy sisters. I can’t think where she got that idea from.

My earliest vivid memories of Sylvia are from when she was a toddler. I played with her like she was my doll, dressing her up to have tea with Belinda’s teddy Helen. I also remember her running into the front garden to greet me from school, and scooping her up in my arms thrilled she was so pleased to see me, while she sunk her sharp little teeth into my shoulder in all the excitement.

Sylvia’s blonde hair and blue eyes captured huge attention when we lived in Saudi Arabia. Locals would crowd around us in the Souks wanting to touch her hair. She wasn’t phased at all by this attention.

Being the youngest Sylvia always had to catch up and continually face not being as good at things as her 2 older sisters. Something we did not let her forget! Our mother, also the youngest of 3, felt this keenly so Sylvia was allowed dispensation from certain family rules and tasks. It felt very unfair to me and Belinda when she did not have to do her share of washing up and was allowed to eat white bread and not like onions! Desperately trying to keep up came at quite a cost. Sylvia had many accidents particularly as a young girl, and I remember hearing her screaming and my heart sinking as I thought “oh no what has she done now?” Aged 7 we went on a sailing holiday with her entire leg in a plaster cast and each time we went in the dingy it had to be put in a plastic bag. We were not a family to be deterred by such things.

Musically she shone. I remember us marvelling at her aged about 3, picking out the tune to Twinkle Twinkle Little Star note perfect on the piano. Belinda would test her perfect pitch, never catching her out. We often played music together as a family, most memorably in a concert in the music room in Brighton Pavilion. She played the piano, violin and recorder to grade 8 standard, regularly competed in local music festivals and led the Brighton Youth Orchestra in her teens. Although she did well academically at school it wasn’t until she joined the Youth Orchestra that she felt she really found herself and not only was leader but also one of the main organisers of social events. She was fun loving and included everyone. Apparently the parties at our home were legendary! She repeated this later with the Lawyers Music symphony orchestra, which she joined through Belinda.

Her close family was of immense importance to her and she was a huge support to Belinda in particular. She was a loving and attentive auntie looking out for her nieces and nephews and seeing things from their perspective. She kept up with all her many cousins and the wider family. In adulthood her friends took on a similar significance and she had an extraordinary number of good friends from all areas of her life.

We’ve long recognised that Belinda is most like our mother, me like our father, and Sylvia was a good mix of both. She, like our mother, lived simply and did not buy unnecessary things, and like our father she went out into the world as a passionate activist and debater, championing causes she believed in. She did spend money on travel however and was very adventurous, although she later admitted that some of her more intrepid back packing trips were to prove herself. For her first solo trip, aged 18, Belinda managed to talk her out of South America into a more manageable Australia. Over the years she explored the silk route, Pakistan, Djibouti, Bolivia, Yemen, Cambodia and Vietnam among other places. She kept in touch with many travellers she met along the away. One friend posted on Sylvia’s blog that she was unflappable even when being shot at by Khmer Rouge guerrillas in Cambodia - something she had kept very quiet from the family.

Sylvia read Psychology at Nottingham University. She then moved into her Parson’s Green flat and trained as a hypnotherapist, working in a complementary health centre a stone’s throw from here. She quickly realised that she wanted to have a greater impact on people’s lives and work within the NHS, helping people with much more serious challenges. She showed incredible determination in applying 3 years running to her chosen Clinical Psychology course before being accepted. It is a course known for it’s anti-establishment views towards the profession and with an ethos that was personally challenging and self-reflective. It was perfect for Sylvia. She got a doctorate in Clinical Psychology at the University of East London in 2004 and was very proud of being another Dr Kapp. When her cancer forced her to quit, she was counselling people who had just been diagnosed as HIV positive.

Sylvia’s diagnosis of secondary liver cancer 3 years ago was devastating to all of us, especially as our mother had died from the same condition 10 years earlier. However Sylvia faced it with unbelievable courage, researching her condition meticulously, knowing all the drug names and even researching how she might die. To say she was an informed patient is probably an understatement!

She also did a huge amount of work emotionally and opened up to much less tangible ways of healing and new ways of seeing the world. She never wanted her life to just be about cancer and during her illness she completed a postgraduate certificate in International Humanitarian Psychosocial Consultation. She also went skiing twice, had spa breaks and weekends away on the continent and attended an intensive course in Skyros, Greece. Last spring she went to a friends wedding in the US with no medical insurance, as well as making frequent trips to Germany and Scotland for treatments.

This summer Sylvia had decided to write a paper with her therapist about the psychological challenges of being a person with cancer. She was very excited by this but it was not to be. However her blog has certainly helped many better understand how it is to live with cancer. It is a huge gift and legacy.

Sylvia inspired so many people with the way she lived her life. She really did not want to let go and leave us, though she accepted it at the end. She told me she wanted us to feel uplifted when sending her off - so it feels important that I end on a note of celebration. As her close friend Tim put it:

“What a dazzling life there is to celebrate,

so adventurous and fulfilled.”

Details for Sylvia's funeral at Brompton Cemetery at 12 noon on Thursday 21st November 2013

noreply@blogger.com (Sylvia) — Mon, 18 Nov 2013 10:20:00 +0000

DIRECTIONS

Public transport: West Brompton station is a few minutes walk away. This has both overland trains linking to Clapham Junction and underground district line tubes, Wimbledon branch. Come out of the station and turn right.

By car: we are permitted to drive into the cemetery through the Old Brompton Road gates and park in the central avenue on one side only - follow the others who have parked before you. Cars must be removed after the burial as the cemetery will be locked. Local on-street parking will be pay and display, coins only.

On foot: there is pedestrian access from the Fulham Road end of the cemetery as well.

Directions to the Pembroke: turn right out of the Old Brompton Road cemetery gates. Cross over the road at the traffic lights. The Pembroke is on the corner of the next road.

All are welcome for both funeral and reception. There is a final bit that Sylvia requested we do that will happen at the reception so please make time if you can to come to that too.

The family request no wreaths. Single flowers may be placed by the grave after the committal.

There will be a retiring collection for Trinity Hospice.

Please follow the link on the service sheet or below to our just giving page if that is easier.

http://www.justgiving.com/sylviakapp

We are going to carry Sylvia's willow coffin about 600 metres to the graveside. We would like to do this in stages, changing the bearers, so that many people can take part. It will be carried at waist height, by the handles, which is a more calm, informal way to carry and which enables people of different heights and ages to be involved and you don't need to all be in step. Please come forward at the time if you would like to do this.

Funeral details

noreply@blogger.com (Sylvia) — Thu, 14 Nov 2013 16:30:00 +0000

Sylvia's burial service will be held in the chapel at Brompton Cemetery, Old Brompton Road, London SW5 at 12 noon on Thursday 21st November 2013.

There will be a reception afterwards upstairs in The Pembroke, 261 Old Brompton Road, a short walk from the cemetery.

More details will follow.

Finale posted by Annabel, Belinda and John Kapp

noreply@blogger.com (Sylvia) — Sun, 10 Nov 2013 11:22:00 +0000

Dear Friends
Our lovely Sylvia passed away in the evening of Saturday 9th November 2013 after a very sudden and swift decline in her health.
For her last week she was in the care of Trinity Hospice whose support and care were outstanding.
Annabel and Belinda were with her at the end and she slipped away painlessly and peacefully.
She will be very much missed.

UPDATE

noreply@blogger.com (Sylvia) — Sun, 03 Nov 2013 16:10:00 +0000

Hi everybody

Thanks so much for all your messages of support and good wishes, I really appreciate them. However at the moment I really don't have the energy to reply, nor to talk, so please for the time being send any messages through my sister's or father's emails and they will print them them out for me:

Annabel: annabel@annabelkapp.com
John: johnkapp@btinternet.com

I may be going into the local hospice tomorrow after another drain procedure to get a real rest, so this seems a good time solution, as this is always very exhausting.

Thank you very much!

GERMANY AND BEYOND

noreply@blogger.com (Sylvia) — Tue, 29 Oct 2013 09:05:00 +0000

A lot's been happening since I last wrote. The treatments in Kassel continued to be very good, but involved long intense days which left me pretty tired. However the clinic doctors arranged for me to have the permanent drain surgically implanted into my abdomen, which we all hoped would make it much easier to manage the ascites fluids and stop them building up and causing such discomfort. This was done at a hospital over 200 kilometres away, so it was a long day trip, but a friend of one of the doctors offered to drive me and my friend Amy for a good price, and also to help with any translation issues.

I was sedated, which was just as well as apparently it didn't all go totally smoothly, but I felt OK, if a bit tender, once it was installed, and the next day the representative from the company came to talk us all through the system (it's a brand-new version of a long-existing system). It was fiddly to drain the fluid, but Amy and I managed it OK after a bit of practice - it was definitely a 2-person job.

A couple of days later the guy who'd driven us over took us on a bit of a tour of Kassel, which was lovely - and Amy and I went out for lunch a couple of times too which was great. Although I feel very self-conscious about my jaundice, it was good to do some normal stuff too.

Funky transport

View from the Herkules monument over the town...

... and up to the folly from the museum

Beautiful autumn leaves round the Schloss (castle)

However, once I got home a couple of weekends ago, things weren't so easy. I had some leakage from the new system, and then after 2 days at home major leakage in the middle of the night, which was rather scary and unpleasant. I called an ambulance, as uncontrolled leakage can cause a sudden drop in blood pressure, and was admitted to Chelsea & Westminster (the Marsden doesn't have an A & E): the new drain had become dislodged and the tube had worked itself out of my body. I spent a few days of last week in hospital and they fitted a stoma bag (used for colostomies and basically a plastic bag which sticks over the wound and drains continuously, and can be emptied and the volume coming through monitored).

Although it's never nice being in hospital, and I didn't get much sleep, this system kept the pressure in my abdomen down so that I felt much more comfortable, and it was definitely easier than the drain. My legs became much less swollen, which helped a lot, but by the time I was discharged I felt quite weak. However the good thing is that all the support systems have kicked into place - there's a discharge liaison service from the hospital, district nurses to cover medical issues, and the continuing care team from the hospice linked to the Marsden (essentially the same as Macmillan nurses), who in theory all work closely together, although that hasn't quite started working seamlessly yet. I would have expected all this to feel quite scary, moving into another phase with home support, but actually it feels a huge relief right now to have expert advice to call on - and it can be tailored up and down as you want / need, which is very reassuring.

Over last weekend the fluid stopped draining into the bag - presumably because the wound has now healed up - so the pressure's building up again, and I'm going in to talk to the C & W team and decide the next steps to manage it. Emotionally it's all been pretty tough, a very stressful roller coaster, and new territory for me, but I feel in good hands. At the moment the Marsden are taking a back seat, since I'm not under any active treatment there, but I'm assured that everyone's liaising closely.

Overall I'm doing OK, but I'm feeling physically quite weak and washed out, and mentally a bit fragile - so much has happened in the last 6 - 8 weeks and I haven't had much time to process it till now. However I see the emotional fragility as a good sign - there's bound to be a reaction to such a sudden change in my health and the limits to what I can do at the moment. So forgive me for not initiating contact, or replying to well-wishers - I simply haven't had the energy, and am not really up for visitors (apart from family and a few close friends) until I get my head round things a bit. Just as my friends Thea and Amy were wonderful supports to me in Germany, my sisters have been fantastic at both practical help with shopping and cooking, and moral support. So I feel incredibly grateful for that. And after 2 weeks in Kassel, a week in Scotland, another 2 weeks in Kassel, then 3 or 4 days in hospital, I'm really appreciating being at home again in my cosy little flat!

QUICK NOTE ON CONTACT

noreply@blogger.com (Sylvia) — Sat, 12 Oct 2013 10:09:00 +0000

Thank you so much for all the messages of support I've received since my last update - I really appreciate it. I just wanted to clarify that although there is internet access in the clinic, I can't really use it much, as almost all the time I'm here I'm having treatments (some of them involving lying down), and as there aren't many treatment rooms patients often have to move around at short notice. There aren't any tables in the treatment rooms and because of the swelling in my abdomen it's not comfortable to balance my laptop on my knee; also my rather old laptop is very heavy to carry around. Most of the day I'm hooked up to drips (sometimes 3 or even 4 at a time), so with all the fluid going into me I spend a lot of time in the bathroom - and moving around pushing a large heavy drip stand is pretty laborious. So all this doesn't leave much time or energy for anything else!

So although I've managed to do these 2 posts and briefly check my email, I haven't had, and probably won't have, the opportunity to reply to emails while I'm here. Please don't let that stop you writing if you'd like to, as it's really nice to know that I'm thought about and cared about: I just wanted to make clear that I'm not currently in a position to answer.

In a similar vein, when I was at home for my brief one-day turnaround I discovered a Post Office "while you were out" card letting me know that someone had very kindly sent me flowers at the beginning of October, while I was in Scotland. I didn't have time to go and collect them, and asked a friend to do it later, but stupidly forgot to leave some ID, so I'm afraid I never found out who they were from. Sorry not to be able to thank whoever it was, but the thought is much appreciated!

I will try to do another update at some point next week if I can, but if the logistics don't work out, I'll write when I get home. Thanks again for following me through this tough patch - it means a great deal to me to have people following how things are going and wishing me well.

CHALLENGES, AND BACK TO KASSEL

noreply@blogger.com (Sylvia) — Thu, 10 Oct 2013 15:55:00 +0000

Although I found the care at the Kassel clinic second to none, and was very impressed by the staff there and their dedication to finding the best possible combination of treatments for me, I've continued to have problems with the ascites building up again, and with jaundice. I managed to go straight on to Scotland for the following week as planned, to have some intensive sessions with the healer I see up there, and that was extremely helpful too – it helped not only with easing some of the physical symptoms but also in helping me come to terms emotionally somewhat with just what a weakened physical state I was in, and how suddenly things have changed into a new, more complex phase.

My main difficulties have been that the excess fluid in my abdomen makes moving around very uncomfortable: it’s hard to bend forward, it can be hard to find a position to sit or sleep in, and the pressure on the lungs makes me very breathless with even small exertions like walking from one room to another or turning over in bed at night. In addition, the swelling in my legs (now the whole length of them, not just the ankles) makes them very heavy, and makes walking a real effort. So in Scotland the day-to-day things like preparing food, getting in and out of the hire car, and getting dressed and undressed were very laborious and exhausting. It was very sobering and has meant a huge adjustment to my normal ways of doing things.

So I continued to liaise with the clinic doctors in Kassel. They'd been looking into getting a newly-developed self-managed drain for the ascites to be implanted while I was there, but unfortunately it turned out not to be possible to arrange it – mainly because it’s such a new product that very few doctors are trained in it yet – and given that managing the ascites makes such a difference to the quality of life, we arranged that I would go straight back to Kassel for another fortnight. There was, yet again, a great deal to organise, with travel and accommodation to sort out as well as rearranging everything I'd booked back at home, and it was tiring to travel again so soon, but I felt very strongly that I wanted to be in the place where as much as possible could be done.

So here I am back again, after just one day back at home to turn around. The plan is not only to try and find a surgeon who will install the drain, but also to give me an intensive course of a brand new anti-cancer agent called curcumin. This is the active ingredient in turmeric, whch has long been shown to have anticancer properties in lab studies and animal trials (there are apparently more than 2000 studies on PubMed), but so far it's only been available in tablet form, and the dosage is therefore limited by what the gut can tolerate. However, in Germany a doctor has recently patented it in intravenous form, and here once a drug or remedy has passed safety checks to prove that side effects are acceptably low, it can legally be prescribed by any doctor, without having to go through large-scale randomised control trials (as is the case in the rest of Europe and North America). This means that substances can be used without the prohibitive costs of such trials (in practise, only the huge multi-national pharmaceutical companies can afford to run these, as they can cost billions of pounds), and that’s the reason that German doctors are legally able to draw on a far wider medicine base. So curcumin became available as from 1^st October, and I feel very lucky to have the chance to try it.

So despite the effort required in getting here again so soon, I feel like I’m in the best possible place. To my amazement and gratitude, 2 friends spontaneously offered to come out with me, between them covering the journeys out here and back home with me, as well as almost all the time I’m away, and that’s made an enormous difference - not just having the practical help of carrying bags etc, but also the moral support and company.

The one downside is that the apartment I was staying in before wasn’t available so I’m in another one, which is very comfortable but doesn’t have internet access, which is why I’ve taken so long to update the blog and let you all know what’s happening. It’s strange being somewhat incommunicado, but the days are pretty long and intensive (there are a couple of other daily treatments, which I'll describe another time), so I haven’t had much energy by the evenings anyway. But at least it means that my only focus has been on getting as much benefit from being here as possible and then resting, so perhaps it's good not having any other distractions! And I'm definitely feeling some improvements compared to how I was when I arrived, which is encouraging even though I know the challenge is in maintaining them. I feel I'm extremely good hands and am very grateful for the opportunity to be here.

EVERYTHING YOU NEVER WANTED TO KNOW ABOUT BODILY FLUIDS (AND GERMAN HOSPITALS)

noreply@blogger.com (Sylvia) — Wed, 25 Sep 2013 07:34:00 +0000

After my last post, things changed course rather. Although I'd had abdominal bloating for some weeks, on and off, it reached a point where it was preventing my digestion from working properly. Basically, the bloating was caused by a build-up of fluid in the abdomen, which can be due to a variety of factors: cancer cells can block the flow of blood through the liver, leading to a build-up of fluid; damage to the liver (either from treatments or from tumour growth) can mean that it produces less blood protein, which affects the body's fluid balance; or cancer cells can block the lymphatic system (which drains off lymph from the body and breaks it down to be excreted), meaning that normal fluid gets stuck in the abdominal cavity and builds up over time. Forgive me for my limited knowledge of the lymphatic system, but my rather simplistic understanding is that lymph is part of the blood, which filters out of the blood vessels to nourish the cells, and although most of it returns into the veins, some of it remains outside the blood vessels and contains proteins, cellular debris, bacteria etc., which has to be collected by a separate system. Lymphoedema, which is where the arms or legs get swollen and painful, is a similar problem in some forms and stages of cancer, but when the fluid is in the abdomen, it's known as ascites (pronounced ass-eye-tees).

So by the end of last week these ascites were pressing on my intestines and making life very unpleasant, as well as uncomfortable, and the doctors at the clinic decided the fluid needed to be drained off. This isn't a difficult procedure but has to be done in a hospital setting, not an out-patient one like Arcadia, so they arranged for me to be admitted to a hospital in a nearby town. I'd expected to be there for a couple of nights, but ended up staying four nights, which was quite tough. They made an incision through the abdominal wall (through the muscle) and put in a tube which drains into a bag, and the bag is changed as it fills up. They took nearly 5 litres of fluid from me over the four days (nearly 4 kilos of weight loss), which was sobering. It can't be done too quickly, as it can cause a sudden drop in blood pressure, so it was done in stages and I was monitored throughout.

I did feel some relief as the fluid was removed, but it took a while, as the body seems to need to rearrange everything, and the hole in my side was quite sore for a couple of days. In addition, my electrolyte balance was disrupted (the salts and minerals in the cells), and I felt absolutely exhausted - I didn't get out of bed the whole time I was there. I didn't have much appetite, and I felt a bit icky about being attached to a bag (the fluid was a horrible garish yellow, which was a bit unpleasant), and I had to carry it with me every time I went to the bathroom (along with intravenous drips of protein and electrolytes to restore the balance).

So although I rested a great deal, it wasn't an easy experience. Everyone was very friendly and kind, but I felt quite vulnerable not being able to communicate much (only a few of the staff spoke any English), quite apart from the usual powerlessness and passivity which comes from being in hospital and quickly getting institutionalised. The good things were that I had a private en-suite room and it was quiet at night so I could sleep much better than I ever have on a ward. Also I was admitted as an emergency case, which meant that everything was covered under the EU reciprocal health system, and therefore I didn't have to pay for any of it. What an incredible set-up - with my EHIC card I could access the very best of treatment abroad and have it funded by the NHS - long live Britain's membership of the EU....

I couldn't face telling lots of people I was there as I didn't have much energy - and I'd also forgotten to bring the battery charger for my mobile phone - but my (German-speaking) friend Catherine was a star, ringing the clinic in Kassel to get the phone number for the hospital, and then arranging for a phone line to be set up for me so that she and my sisters could ring me - and that link to the outside world was a real lifeline, and kept my spirits up. The rest of the time I slept, read, meditated and listened to music, so the time didn't hang too heavy overall.

However I'm very relieved to be back in my apartment in Kassel. While the skin wound heals I have a small bag attached (no tube, just strong adhesive) to the hole, to catch any leakage, but it's pretty discreet and very manageable. I'm still feeling pretty tired, but much more comfortable even though my abdomen is still a bit swollen and tender, and my feet and ankles are pretty much back to normal which is great. I'm back on the clinic treatments quite intensively - I had over 4 hours' worth of intravenous infusions yesterday, aiming to help stimulate liver functioning and general detoxification, as well as the hyperthermia for an hour and the electro-magnetic treatment for 20 minutes.

The not-so-good news is that ascites tend to come back after being drained off, and given the extent of disease in my liver, this is likely to be an ongoing problem.

My liver function is still a worry (I've been slightly jaundiced for the past week or so), and unfortunately until that's stabilised the clinic can't do much in the way of targeting the tumours directly, since if the liver can't process tumour breakdown then it would cause a build-up of toxins and further difficulties. Also, although I've had problems and hospital admissions before, those have been connected to the side-effects of chemo, and this is the first time that my symptoms are due to the actual tumours themselves. So it's been rather scary to confront being at a stage where my options are much more limited than they were a few months ago, and to realise that my liver is in quite a serious state. The implications of that aren't clear yet - it depends how well I respond to the treatments - and I'm finding that hard, but am trying to take things a step at a time, and just wait and see how things are by the end of the week. I'll keep you posted.

A few shots of my lovely apartment:

UPDATE FROM KASSEL

noreply@blogger.com (Sylvia) — Thu, 19 Sep 2013 10:23:00 +0000

Firstly, many thanks to those of you who have sent messages of support and wishing me luck - sorry not to have replied to them individually, but I really appreciate knowing that I'm thought about in this new step into the unknown. I'm glad to say that in spite of a busy week leading up to coming to Germany, everything went smoothly and the journey, although tiring, was straightforward. I was very glad to arrive, because the abdominal bloating has been getting worse again, to the point where it's now not only pretty uncomfortable but also hard to bend down to put my shoes on, and it's causing pressure upwards onto my lungs (making me short of breath) and downwards onto my bladder. In addition, a few days before I left the UK I also started getting swollen ankles and feet. There can be various causes for this, ranging from serious to not-so-serious, but memories of my mother's very swollen legs in her final weeks made it quite a scary development.

So I was extremely relieved to be going somewhere which might help with these symptoms. My impressions of the Arcadia clinic have all been positive: it's a fairly small place, situated in a residential part of town in an elegant old building. There are 3 doctors, 5 nurses and a receptionist, who all get to know you very quickly, so the care is very personal and I feel in very good hands. The apartment I'm staying in is a 10-minute walk from the clinic, and is a delightful light airy place with Scandinavian-style decor. It's around the corner from a square containing several cafes, a bakery, a supermarket and a well-stocked organic shop, and it's lovely having such a comfortable base for my stay.

Treatment started on my first day, after consultations with 2 of the doctors, but the plan for the rest of my visit is being worked out with me as they see how I am and how I respond. The basic rationale is to improve my liver functioning; to address the high levels of inflammation in my body; to use natural anti-cancer agents against the tumours; and generally to support the functioning and metabolism of the healthy cells. So I'm having daily local hyperthermia (heat treatments directly to the liver and lungs) - tumour cells don't tolerate heat as well as normal cell and are therefore more susceptible to damage - combined with various intravenous infusions which target the above areas of concern. There's also a daily treatment with a pulsed electro-magnetic field machine which aims to increase cell metabolism and improve energy levels. (A lot of these treatments are similar to what I had at Dr Herzog's clinic from 2011-12, but with newer technology and drawing on a wider range of materials.)

In addition, I'm booked in for a lymphatic drainage massage with one of the nurses, to improve circulation and (hopefully) reduce the swelling and bloating. I've also seen the doctor who specialises in diet (he spent many years as a radio-oncologist but now also practises nutritional therapy), and he's come up with some suggestions about supplements specifically to help liver function, plus a diet which changes the body's metabolism to make it as inhospitable as possible to cancer cells. I'll post more about that later, as it's a topic in itself. In addition, I've had a couple of "counselling" sessions with the doctor who specialises in psycho-oncology - not exactly what I was expecting, as it was quite structured, but very useful thought-provoking. So its a very well-rounded, holistic approach, and it really appeals to me.

However, although all the treatments are "natural" (as in, not using manufactured drugs), they're certainly not negligible in their effects, and on my second and third days I've had a kind of detox reaction, with cramping and digestive upset, and feeling generally shaky and weak. It's made it hard to eat - which of course adds to the disturbances in metabolism and well-being - and I've felt totally exhausted. Apparently this isn't unusual, and is also a kind of feedback to help find the right balance between maximising treatments while giving the body time and rest to process them: this makes sense to me, and I've felt very well taken care of when I've been unwell, but I must admit it hasn't been very pleasant (as well as a stark reflection of how very low my energy is at the moment). So forgive me for not writing more at the moment - I will do when I feel a bit better and can do it justice!

THE NEXT STEP

noreply@blogger.com (Sylvia) — Mon, 09 Sep 2013 22:32:00 +0000

Since my last post I've been pretty busy planning where I go from here. I subscribe to a number of mailing lists which summarise or give information about alternative treatments for cancer, and the research being done on them. Through one of these mailing lists I heard about a small clinic in Germany which offers a wide range of the best-established alternative treatments, and seems to be very clued-up and cutting-edge in its approach.

So I had a telephone consultation with one of its doctors 10 days ago, and really liked the sound of the clinic's philosophy. As a result, I've arranged to go there next weekend, for a fortnight. The logistics took some sorting out (the clinic isn't an in-patient set-up, and although they have a few rooms for overseas patients, these are all currently full, so I've arranged to rent an apartment instead), but now I'm all set with flights, train tickets, and a hotel for the first night all booked. It's called the Arcadia Clinic (http://www.arcadia-cancer-treatment.com/) and is in Kassel, just under 2 hours' train journey from Frankfurt.

My personalised programme of treatment will be worked out with me when I arrive, but will include hyperthermia; intravenous infusions of naturopathic substances (both to tackle cancer cells directly, and to deal with the damage done by chemo and radiotherapy by helping the body detoxify / improving digestive functioning / boosting the immune system etc); other treatments such as electro-magnetic and oxygen therapies; and psychological counselling. I really like the sound of its holistic approach, and also it will be great to get a fresh perspective on how to become / stay as well as possible. I've got some great practitioners in London, but I've been doing the same things for a long time now, so getting a second opinion feels very timely. I'll post more details about my treatments once I'm there - I'll have my laptop with me, so I'll still be in reach of email and Skype.

Then immediately I get home I'll go straight on to Findhorn to have another few days of sessions with my healer up there (so I've also arranged my airport transfers, airport hotel, Scotland flights, accommodation and car hire for that week). It means I'll be away from home for 3 weeks, which feels a long time, but it'll give me a chance to focus fully on resting and making the most of the treatments.

It's interesting, it's felt very clear to me that this is the right next step - a gut instinct perhaps - and despite all the planning involved, I've felt very focused, and actually everything's fallen into place very neatly and satisfyingly. It feels like a good sign, and I'm really looking forward to going.

I've got a busy week till I go: I've just got home from a weekend away (a wonderfully chilled trip to Ghent in northern Belgium with my friend Catherine); I'm spending two days in Sussex this week seeing the alternative doctor and also two sets of friends nearby; then the weekend before flying to Germany is a long-arranged group catch-up with my friend who got married in the USA this spring. So I don't have much time left over, but that feels OK - I find packing takes as long as you have, so perhaps I'll be more efficient than I would have been otherwise! It's great to be able to report that overall life feels pretty good at the moment, and I'll keep you posted!

Ghent's mediaeval centre

One of the many lovely cafes we sampled

THE MORE IT GOES (TIDDLY POM) ON GROWING...

noreply@blogger.com (Sylvia) — Thu, 29 Aug 2013 19:04:00 +0000

Apologies for the flippant title of this post (and apologies to Winnie-the-Pooh for misquoting his little ditty). Perhaps I've run out of earnest ways to feed back on scan reports showing yet more of the same.

So yes, unfortunately, the latest scans showed some more growth, both in the liver and with a few more spots in the lungs. It's always devastating hearing this kind of news - like being kicked in the stomach - but for some reason this time I haven't felt very interested in dwelling on it. It's not that I'm actively trying to avoid thinking about it, or that I'm striving to "think positive": I simply seem to have bounced back fairly quickly. (I'm sure this was helped by having just come back from a few days at Findhorn in Scotland, where I'd had a number of sessions with the healer there, and we'd worked a lot on grounding me emotionally and finding ways to hold onto a sense of calm and tranquility among the rougher parts of the ride.) So, pleasingly, I've found myself more focused on the good things which came out of the consultation.

The best of these was that, without even asking, we saw the consultant. It's so much more satisfactory seeing him: it feels like a dialogue, and he's clearly very sharp and clued-up, so the conversations are far more productive than with even the best of registrars who simply pass on the consensus that the team / consultant has come to.

More specifically, he told us (in direct contradiction to what he'd said in January) that there is another chemo drug they could use. He warned that with each successive round of chemo there are diminishing returns, so any possible improvements would be expected to be modest, but this drug can help some patients. He asked what I thought about more chemo, and I said I'd want to think about it, given that my digestive system certainly hasn't recovered from the last lot, and that my liver isn't in a good state. In fact, my instinct is that it would be disastrous right now, and I definitely don't want to go down that route at the moment if I can possibly avoid it, but it's great knowing there is another medical option available: psychologically it's so very different from having exhausted all the possibilities. Reassuringly, the consultant was reasonably relaxed about the further growth and suggested waiting a couple of months and rescanning to review things then.

I asked whether the growth in the liver would account for my liver function tests continuing to deteriorate (at a slightly alarming rate), and he replied that it doesn't really, and that the test results are more likely to be an after-effect of the SIRT (radioembolisation) treatment in April. He mentioned that, as the procedure is becoming more widely-used, some clinicians are recommending longer periods on steroids afterwards, to counteract inflammation in the healthy cells, and he suggested a 2-month course of steroids for me. As I understand it, it's the healthy cells which aren't currently able to function properly because of the inflammation (which is part of the immune response to damaged tissue, but can be counterproductive because it makes cells swollen, like with an allergic reaction, so that they don't work as they should). So, although I don't like being on steroids, it makes perfect sense to me, and I hope that this might help stabilise my liver functioning. Whether or not I have any chemo after that, I'd certainly be in a better position to process it if my liver is able to work better.

So I'm fairly happy with the outcome: I feel that I've been listened to, included in the doctor's rationale for his recommendations, and it gives me a bit more time to do whatever I can to recover my strength and energy. You won't be surprised to hear that I've been (yet again) researching all possible options for alternative treatments which might help my immune system and gut to repair as much as possible - let alone anything which could possibly help to stabilise the growth phase - and I'll let you know if I come up with a new plan. One thing I've embarked on, after "falling off the wagon" with my restricted diet for a while, is increasing the amount of fruit and vegetables I eat - for anyone who's interested in the emerging scientific evidence on the anti-cancer properties of these food groups, see this fascinating talk: http://www.ted.com/talks/william_li.html

Meanwhile, I've realised it's quite a while since I put any photos on the blog, so here are a few, to remind me that I have been able to do some nice things during the last few months:

Day out at Sissinghurst Castle, arranged as a birthday treat by my friend Sheila,
with her gorgeous youngest son Xavier

Setting off for a ride on Wimbledon Common with my sister Belinda in May

Revisiting the beautiful countryside of mid-Wales in August

The younger generation in my favourite lake,
where we used to go as children from as far back as I remember

Lifelong family friends at the holiday home we share

JOLTINGS

noreply@blogger.com (Sylvia) — Fri, 16 Aug 2013 13:54:00 +0000

One of the things I find most difficult is the collision between what sometimes feels like two completely separate worlds: the normal everyday mundane stuff, and the medical. A couple of weeks ago I spent a lovely few days in mid-Wales with old family friends, along with my sister and nephews, and although I was aware of feeling weary at times, overall I felt pretty normal. The bloating and poor appetite were better (helped by big communal meals so that I didn't have to spend time thinking about what I could face eating), but also everyone there knew about my situation so we didn't have to talk about it. I felt surrounded by caring compassionate people who have known me all my life, and that meant that we could just have normal conversations - including lots of joking and banter - and that was wonderful, really restorative.

Then I returned to London and had my routine blood tests, and was immediately transported back into "patient" mode. My liver functioning, which had been deteriorating a bit, had declined further, and I was put on a course of steroids (the rationale being that my liver could be inflamed, possibly as a result of the radiotherapy which can disrupt blood chemistry for quite a while after treatment, and steroids reduce inflammation). My haemoglobin was also pretty low, so I had a blood transfusion at the end of last week. What with waiting for the blood tests results, waiting again for a prescription for the steroids, having to come back on another day to give a blood sample to match with the donor blood for the transfusion, and spending more than 5 hours having the transfusion itself, suddenly a large portion of my week was spent at the hospital.

Sadly that's continued this week too: I've had bad bloating, distention and discomfort since last weekend, and follow-up blood tests showed that my liver functioning hasn't improved. The Marsden team were worried there could be some blockage and I had an urgent ultrasound scan. Urgent, by the way, means that they fitted me in the same day, but it meant waiting 3 hours for a slot and then another 2 hours before someone was free to give me the results. The waiting around is very stressful, as you don't even want to go and get a cup of tea or a sandwich in case you miss being called, and spending all day on uncomfortable plastic chairs is not great when you're in pain and feeling exhausted.

The ultrasound didn't show up anything obvious, and I'm very relieved by that, and thankful that they took it seriously and investigated, but I still don't have an explanation (or even any hypotheses from the medical team) for why my liver isn't working properly, and that's an incredibly scary position to be in: at one stage I was terrified that my liver might be about to pack up at any minute. Once again, that comes partly from the lack of continuity and communication - I very briefly saw my specialist nurse, who arranged the transfusions and set up both the ultrasound scan and a CT scan for tomorrow, but she only deals with the practical things, and the doctor she spoke to was (I think) whoever in the team happened to pick up the phone - certainly there was never any suggestion of me actually talking to a doctor in person. Later on a very junior on-call doctor told me that the ultrasound was inconclusive, but she clearly knew very little about my case, asking whether I was on chemo now and not appearing to know about the SIRT procedure in April, and that's very frustrating and doesn't really inspire confidence.

But I was conscious that alongside my worries about the blood results (why now? what's going on? what if this is the start of something serious?), I was also very upset by having my life taken over again (as it felt) by the reality of my health problems: having to drop my plans for the week to accommodate medical appointments, and needing to cancel a number of nice social things I'd been looking forward to because I felt too unwell. (I'm going back to Scotland to see the healer next week, and I've had to cancel my final session with him and change my flight home in order to be able to go to the clinic appointment for the scan results - not the end of the world, but a nuisance and extra admin all the same.) I guess it boils down to a control thing: it's felt like losing my autonomy and the illusion of being in charge of my life, and after a period without feeling defined by illness, it was a bitter blow to have to readjust again. It's tough having to put your life on hold, to relinquish whatever plans you had, to accept that the needs or crises of the body actually have total dominance over what we like to think of as our "free will".

I hope this doesn't sound as if I've got my priorities wrong: what I'm trying to convey is how I can be coasting along fairly comfortably, knowing what the week holds, doing normal things like seeing friends, going to appointments, shopping, doing admin etc, and then suddenly the cancer comes crashing abruptly in and takes over. It's also weird going back the other way and being in a "normal" social environment while trying to explain to other people what's been happening.

So it helped enormously that my friend Catherine was with me on one of the longest Marsden days (putting all her own plans on hold to stay with me till I was allowed home, bless her), and that she witnessed something of these two slightly contradictory worlds. I guess when people see me socially it's easy to assume that I'm fairly alright, and that despite a few medical appointments I'm as in control of my destiny as anyone else - not many people see me in the enforced passive role of being a hospital patient, helpless in the face of the endless waiting of the system, and feeling like my life's been taken over. I don't like to dwell on those aspects of my existence, but it's certainly part of my reality, and one that I find very challenging, both in itself, and in the suddenness and unpredictability of switching between the two worlds.

However, the other thing which has really helped has been my alternative practitioners: once again, it's made a huge difference having people who actually know me and my history talking me through what might be going on, and having helpful suggestions about how to improve things. Both the alternative doctor and my osteopath believe I've been having an immune system overreaction to the blood transfusion, rather than a blockage or a build-up of fluid in the abdominal cavity (ascites) - which makes sense to me since I've had swollen glands and felt generally achy, as you do when your immune system is working hard - but, whether or not that's "true", having an explanation other than my google searches on end-stage liver failure has, not surprisingly, taken a lot of the fear away. In addition their treatments have eased the pain and reduced the swelling considerably. I don't mean to dismiss the expertise of the Marsden, but I'm very thankful to have a support network which means I don't have to rely solely on their somewhat patchy communication for making sense of what's going on in my body. I'm so lucky to have the money and education to make use of the different forms of care which are out there - it really makes a difference, especially in the tougher times.

THANK YOU

noreply@blogger.com (Sylvia) — Mon, 29 Jul 2013 15:57:00 +0000

I'd like to say a heartfelt thank you to all of you who responded so generously, sympathetically and warmly to my last update - in blog comments, emails, texts, cards, letters, on Facebook, and by sending flowers. I tried to reply individually to as many people as I could, but if I haven't been in touch with you directly, please know that I'm truly grateful to know there are so many people out there who care about me.

I also really appreciate the offers of practical help as well, and I'm sorry that I don't really know what to suggest people can do. Although I do feel quite weary at times, and it can be a bit of a drag to do normal household chores and so on (as I'm sure everyone feels from time to time!), that's not really a problem: what's hard is dealing with things emotionally, keeping on top of all my appointments, making decisions, and holding it all together - and no-one else can really do those things for me. I realise it must be very frustrating for friends and family who desperately want to help by doing something concrete - but please know that (at the moment) the support I need is mostly to know that I'm thought about, and having people interested in what's happening with me, rather than having things done for me.

So please don't underestimate the importance of simply getting in touch every once in a while (even better if I don't always have to reply!), as so many of you have done recently.

However, on a more practical note, for those of you I see regularly: coming up with ideas of nice things to do, trips out and so on, would be wonderful, as when I'm feeling low in spirits or energy it can be difficult to think creatively, or even imagine what might feel fun. Plus it can feel a lot of effort to research or organise things, so having someone else take charge of the arrangements is even better. I hope that helps a bit....

I'm feeling a lot better now than I did when I last wrote. It's funny, I understood at the time that the news from the last scan wasn't particularly bad (certainly not as bad as some results or consultations I've had), but it kind of tipped me over into realising just how much effort it takes to hold things together emotionally, and how utterly exhausted I feel after more than two and a half years of keeping myself going, picking myself up each time I get knocked back, and trying to maintain a balance between a "normal life" and adjusting to a completely different way of relating to my body, my identity and my future. Definitely a case of the last straw breaking the camel's back (or at least resulting in the camel lying down and feeling unable to carry on for a while)...

Yet I think that's bound to happen every so often, and isn't necessarily a bad thing. In a way it's reassured me that I can have a period of feeling weepy and overwhelmed and unable to keep up my "normal" front, and still come out the other side and be able to carry on again afterwards - my default setting is being afraid that if I let my feelings fully come to the surface, I'll simply get swamped and never be able to recover, so this last fortnight has proved that that's not the case. I certainly feel more stable again, and am trying to make the most of that while it lasts.

DIFFICULT NEWS

noreply@blogger.com (Sylvia) — Sun, 14 Jul 2013 20:16:00 +0000

I'd been dreading the scan 3 months after the radiation procedure. Every scan I have is anxiety-provoking, but I was particularly worried this time as I've continued to have distention in my stomach, some gut discomfort, lack of interest in food, and I've felt weary and tired no matter how much I sleep. In addition I've had some backache and tenderness in my lower ribs (on both sides) which can make it hard to sleep. I assumed that this was due to enlargement of the liver putting pressure on my abdominal cavity, which I'd experienced in the run-up to my diagnosis, so I was fairly sure these were all ominous signs.

However, the feedback from the scan reports was that there had been some small growth in 2 areas of the liver, and some shrinkage in another area, meaning that the overall conclusion was that things are stable. What I hadn't been expecting at all was that there are a few spots in my lungs - all very small, but in this context they have to be viewed as most likely to be further metastases (secondary cancer tumours).

I was totally devastated by this. I'd read somewhere that when metastases are only in the liver it's unusual for them to spread to other organs (in comparison to, say, breast cancer, which once it spreads often appears in the liver, lungs and bones), so I'd assumed that progression to other organs was one thing I didn't need to worry about. It scares me hugely: I can't generally feel my liver, so although I know it's carrying a large burden of disease I'm not aware of it inside my body, but my lungs I feel and am conscious of with every breath - somehow I feel much more intimately connected to my lungs. The idea of them becoming increasingly affected is terrifying, and, despite my best efforts to rein in my fears, for a few days I couldn't get the image out of my head of choking and gasping to death, drowning in my own fluids. I've been very tearful since hearing these results, and also had a kind of heavy despair: a conviction that this is the beginning of the end. As you'll see later in this post, the medical view is (for once) less pessimistic, but this is what's been going on in my head.

The other emotion that's hit hard is disappointment. A high proportion of people undergoing the radiation treatment have a good response (i.e. it stops further growth for a while or shrinks things), and I felt very unlucky to have had such an equivocal result. I'd also seen the healer in Scotland a couple of weeks before, and had come away feeling quite positive, yet these results left me wondering whether any treatment is ever going to work, given that every scan for a more than a year has shown deterioration. So it's shaken my faith and knocked me back in a big way.

However, the doctor assured me that lung metastases (if that's what they turn out to be) can often cause no problems or symptoms at all. He also, very tactfully, pointed out that the main area of concern is still the liver (i.e. I'm in much more danger from that than I am from a few lung lesions). He said that the full response to SIRT (the radiation treatment) can sometimes take more than 3 months to show (so it's possible there's some benefit still happening), and in any case the fact that overall it's stabilised the liver tumours would indicate that it had been successful. If the stability were to last for some time, then it might be possible to consider repeating the SIRT in the future (although if it doesn't continue beyond a few months, there'd be no point in repeating the procedure).

So the team's recommendation was to do nothing at the moment, but re-scan in another 3 months, to see if there's any change over time. If I have any problems or new symptoms in the meantime I can go in and be assessed, and if necessary the scans can be brought forward - they'll also monitor my blood counts and liver function during this period. If things get worse, they'll discuss whether there's any further treatment they can offer. (I'd been told clearly, several times, that there isn't anything further they can do, but I guess if there's more deterioration they might consider riskier treatments than they would have done previously, since the process is a balance of risks and benefits.)

Overall I'm very relieved by the team's decision. I was frightened of being discharged and left without any medical back-up, so it's hugely reassuring to hear not only that I'm still very much under their system, but they're clearly thinking very carefully about my case and are planning to keep reviewing it. I was also afraid they'd suggest re-starting chemo, which of course I would have done if it had been urgent, but I'm incredibly relieved not to have to face more gruelling draining treatment when I still feel nowhere near recovered from the last lot. And although I'm still struggling to deal with the emotional fall-out from the news, I'm grateful to have 3 months to process it, adjust to it, and do what I can to improve my physical recovery.

On that note, I saw my alternative doctor recently and told him the latest developments, and he too reiterated that these lung lesions could very well not cause any problems. Unlike the Marsden, he believed that the damage from chemo and radiation could very well explain the ongoing sensitivity of my digestive system. He also had an explanation for my tender ribs: apparently chemo can prevent nutrients and minerals being properly absorbed into the bones, leading to an effect a bit like osteoporosis, and as new bone tissue is produced to replace the gaps, it can mean bones feel tender or painful. I don't know whether this is an accepted scientific theory, but it makes an enormous difference to have a non-threatening explanation; and now that I'm not terrified it's a sign of something sinister, I'm already a lot less bothered by it.

The alternative doctor also suggested doing some high-dose vitamin treatment (by intravenous infusion) and has agreed to put together a programme for me. Again, I don't know how much difference this might make, if any, to the state of the cancer, but it's incredibly reassuring to have someone say, "OK, we can do x y z" rather than believing that there's nothing which can be done.

So gradually I'm getting my head round it all. In a way, nothing much has changed, but the emotional roller-coaster is certainly the most challenging thing at the moment. I haven't told many people yet (partly because I haven't been able to talk about it without crying, which is very draining), and I'm sorry that hearing this news via the blog is a rather impersonal way of communicating, but I hope you'll understand that it makes things much easier for me than having to repeat it dozens of times.

I know that there are lots of people who care about me, but this is a very lonely process, and it's fair to say that I'm quite low at the moment (I didn't even have the heart to search for any cartoons). So if you feel moved to express support via a blog comment, text, email or card, your thoughts and good wishes would be very very welcome.

ON MINDFULNESS

noreply@blogger.com (Sylvia) — Mon, 01 Jul 2013 09:20:00 +0000

As I mentioned in my last post, last autumn I did an 8-week introductory course on mindfulness (though I missed one session when I was in hospital). I've just got back from a week in Scotland seeing the healer again, and made use of the peace and tranquillity up there to reflect on some of the ideas and concepts I've found useful, and the patterns I'm trying to change, so I thought I'd say a bit about mindfulness here. I'm sure I've interpreted some of it in my own idiosyncratic ways, so my apologies for misrepresenting it to any readers who know a lot more about it than I do!

The definition of mindfulness that we were given was: intentionally focusing attention on the present moment (i.e. not the past or the future) without judgement. I was initially rather underwhelmed by that, as a great deal of the time the present moment feels so mundane, or dull, or simply waiting for something more interesting or important to take place.

The early stages seemed very abstract, especially as the technique we were taught first was to focus on the breath, as this is something which can only, by definition, be happening in the present moment. At first I found it difficult to see how tracking each in-breath and out-breath would ever help me to deal with the fear, resentment, sadness and envy of healthy people which having cancer has produced in me. After all, it couldn't give me a guarantee of what was going to happen - or rather, a guarantee that everything will turn out OK - which is what I wanted more than anything else (and still do, to be honest).

However, I began to see that the discipline of focusing on the current moment, and bringing back my attention to it every time it wanders, has given me more awareness of just how busy and all-consuming my thoughts are (as indeed is the case for pretty much everyone). I also came to see that the vast majority of my most distressing thoughts are concerned with what I'm afraid might happen in the future ("what if?"), or railing against what's happening in the present ("it shouldn't be like this"). It's much more rare that what's happening right now is unbearable in itself - mostly it's the meaning I put on it. So, for example, if my stomach's inflamed and making it hard to get to sleep, or I walk up a flight of stairs and feel out of breath, those experiences might be uncomfortable, but what makes them properly disturbing is the panicky fear about what this might indicate or lead to ("surely this symptom should have stopped by now? it can't still be the chemo, what if the cancer's spreading into the stomach?" or "I can't even walk upstairs now, what if this is the beginning of the end? I can't imagine ever being fit enough to go skiing again, it's so unfair, and what's the point in being alive if I can't do the things I love?"). The thoughts about the present moment are what produces the emotional loading, not the moment itself.

Of course, those thoughts and feelings are entirely natural and understandable, which is where the non-judgement part was a revelation for me. In the past I'd try to deal with those kinds of thoughts by trying to talk myself out of of feeling how I felt - perhaps by reasoning with myself as to why it was illogical to feel that way, or making a plan of how to change how I felt. Mostly though I'm in the habit of being much more critical and stern, telling myself how much worse off other people are and how lucky I am in comparison, or that I'm being silly and ridiculous to jump to such conclusions, or that I mustn't allow those negative attitudes any headspace because I should be thinking positively at all times and never giving up hope of a miracle. So then I'd not only be scared, sad or angry, but also frustrated and down on myself as well - not a great combination! I haven't managed to stop those thought processes, but at least some of the time now I can recognise them and detach myself to some extent so that I don't get so caught up in them.

Before I started the course I guess I'd had some vague notion that practising mindfulness would turn me into a totally serene individual who was never thrown off balance by anything, who never felt strong emotions, who accepted whatever life throws at them without trying to change it, and who always saw the silver lining in everything, no matter how bad (and who would probably be extremely irritating!). It took me a while to realise, with a mixture of disappointment and relief, that that's not at all the case. Instead, as I understand it, it's about accepting that whatever's happening right now is what's happening right now, and that's OK. I can still decide to explore different ways of looking at it, or taking steps to change what I can, but I can separate out (at least some of the time) what's happening from my thoughts and feelings about it. To go back to the examples I used earlier, when I'm feeling physically under par I've found it very grounding not to judge myself for how my body's feeling, but instead to remind myself: "I'm feeling x y z discomfort, and some anxiety about it, and that's just how things are right now". The physical experience is still the same, but it removes a great deal of the fretting and angsting about it, and about what might (or might not) be going to happen in the future. And that definitely opens up the possibility of noticing other things in the here and now which might be more pleasant, rewarding or satisfying.

Another key thing - which I've known about intellectually for a long time but have only recently started trying to incorporate into my thinking - is the idea of impermanence: that everything, good and bad, inevitably changes. Trying to cling onto the pleasurable times, and protesting and railing against the unpleasant things, are equally misguided. I've found this really helpful for trying not to get caught up in nostalgia for my pre-cancer life: I can complain about it all I like, and feel hard done by and tragic, but it's a waste of time and energy because the reality is that my life has changed - as everyone's does throughout their lifespan - and this is how things are now. And now is all we have - it's the only time there ever is. I don't have to like it, but accepting that this is how it is stops me (at least some of the time) from metaphorically banging my head against a brick wall and saying like a spoilt child, "but I don't want it to be like this!" It would certainly be a much more peaceful existence if I could let go of fighting against reality...

Of course, I still struggle with all this. Often it's only after a period of feeling stressed, upset, anxious or resentful that I can even remember any of these perspectives. And I'm rubbish at finding / making the time to practice - I procrastinate hugely, and come up with all kinds of reasons why it's not convenient to do some meditation now.

So, in spite of hoping for some dramatic epiphany where the meaning of life would suddenly fall into place, it's been much more subtle - yet still interesting and useful. Like good therapy, it offers a way of learning to observe yourself without slipping into unhelpful judgement and self-criticism, and I believe that's the space where learning, and creating new patterns, can take place. At least, I hope so!

RECUPERATION IN GREECE

noreply@blogger.com (Sylvia) — Sat, 22 Jun 2013 09:38:00 +0000

I had a very restful week at a small village on Lefkada, one of the Ionian islands between Kefalonia and Corfu. It's not one of the picture-postcard-pretty white and blue villages, as almost all the buildings were destroyed in an earthquake in the 1950s, but it was pleasant and laid-back, with lots of greenery.

Olive trees near my apartment

Heavily-laden lemon trees

Glorious bougainvillea

One of things I hate about being single is the problem of holidays - it's great when friends are around to go away with, but pretty much everyone I know has commitments to work and / or family, caring responsibilities, limited holiday leave, or stretched finances at the moment. In my 20s and early 30s when I was between relationships I'd happily go off backpacking on my own, since I was guaranteed to meet other backpackers, and in fact I had some of the most sociable times of my life when I was travelling. However after a certain age I simply didn't fit into that demographic any longer, plus as I've got older I'm no longer prepared to share dorm rooms and live on a meagre budget - I like the odd touches of luxury these days!

So for a few years I went on half a dozen or so holidays with Explore Worldwide, a company specialising in small-group travel, and enjoyed the advantages of going to far-flung places (such as Central Asia, the Middle East and Africa) without the hassle of dealing with the bureaucracy, and with the company of like-minded people. However, Explore insist on full insurance cover - without proof of it they won't allow you to travel with them - so that's no longer an option for me while insurance companies won't cover anything cancer-related; plus right now I don't have the mental or physical energy to want anything too challenging (much as that pains me to admit).

So I was very pleased to discover a small UK company called Serenity Retreats, which offers self-catering accommodation on Lefkada, along with optional meditation sessions each morning. There's also the option to do an introductory course on mindfulness, but since I did a very similar course last autumn I didn't sign up for that. It's designed for solo travellers who aren't looking to party all night, and you can do as much or as little as you like in terms of exploring the island or simply sunbathing on the beach. In the week I was there, there were only 3 other guests, and we all mainly did our own thing during the day but met up for dinner in the evenings. One day 3 of us went on a boat trip around the islands, which was a nice way to see a bit more of the area, and I also had a couple of massages.

Our vessel for the day

Swimming spot off the boat

Other than that, since I was so tired, I did very little apart from the morning meditations, going to the beach, and reading copiously. I had a lovely apartment looking straight out over the sea, and although the weather wasn't as warm as usual for the time of year, with some cloudy days and windy spells, there was enough sun to bask in at least part of every day. The sea however was fairly cold so I only swam a few times.

Not sunny all the time.....

....but a wonderful view from my apartment

My local beach, as viewed from my verandah....

....and from close up

There was a bakery in the village and a few small supermarkets, a couple of cafes, and a reasonable number of tavernas along the harbour front. In peak season it's apparently full to bursting with Greek and Italian tourists, but in early June it was peaceful and tranquil.

Fishing boat delivering the catch of the day right to the taverna!

So it wasn't an exciting week, but it was definitely restful. Spending time on my own isn't something I struggle with, but equally it's not a treat for me - and it's hard to have "fun" on your own: that's generally a shared experience. All the same, I think it was good to have slowed down without having to feel guilty about not getting things done, or else worrying about my low energy levels. I came back feeling considerably better (and reassuringly recovered from the virus of the previous week), and have been really missing the beautiful intense colours and light of the Mediterranean.

Yet another irresistible shot of that beautiful view

Sunset over the bay

OVERHAUL OF THE FLAT

noreply@blogger.com (Sylvia) — Sat, 01 Jun 2013 14:17:00 +0000

Some of you will know that over the past couple of years I've been gradually working on improving my flat. It's long overdue, and now that I spend much more time at home I've come to realise how much my living space affects my mood. As these things tend to do, my ideas have snowballed, and I've ended up doing far more than I'd originally intended (as well as it taking substantially longer!)

So far I've done a huge amount of clearing out, of cupboards, wardrobes and attic; I've set up my spare bedroom as an office space, which involved not only replacing furniture and restructuring my filing system but also fitting new sockets and internet access points, and while I was about it, replacing all the sockets and light switches; I've had mould treated and repainted with anti-fungal paint, and installed a positive air pressure pump to solve the condensation issues; I've re-insulated the entire roof and fitted new high-spec super-efficient double-glazing; I've had new shelves and cupboard doors made in the corridor and my bedroom; and I've reconfigured a lot of storage space to make better use of the limited square footage.

However, since last autumn and the recent chemo regimen, I simply haven't had the physical or mental energy to make any progress, and the project ground to a total halt. Yet I've been constantly reminded of all the not-yet-done improvements when I see bare plaster, unpainted wood, boxes of correspondence and photos waiting to be labelled and organised, and new prints for the walls which I haven't yet put up. It's funny, after a while it seems like you stop noticing these things, but actually, even if I don't always consciously register it, it sparks off self-recriminatory "I ought to have dealt with that" or "I should sort that out", and I think it's been getting me down a lot, having constant reminders of "failure" - or at least, of daunting amounts still to be done. And there's so much choice available that despite spending many hours researching and thinking about the various options, for a long time I went round and round in circles, finding it very hard to decide what I wanted and how best to use the space I have.

I'm always very impressed by people who are good at these kinds of projects, as it's definitely not something which comes naturally to me; and even though I've thrown out a huge amount over the past couple of years, I'm naturally a bit of a hoarder and, like for many people, letting go of things isn't easy. (I heard a wonderful definition of the difference between "stuff" and "junk": junk is stuff that you throw out, and stuff is junk that you keep!)

Anyway, for all these reasons, I've been putting off all the smaller tasks until the flat's redecorated - which is logical, but made the whole project feel much bigger and more of an upheaval to get started on. Since procrastination has been such a feature of this process, I thought it warrants not one but two cartoons (well, actually, I couldn't decide between them, so you're getting both!)

However now, with the help and encouragement of some wonderful friends and my sisters, I'm finally on that final phase. As I type, the shelving in my living room is being replaced and extended, with built-in cupboards to hide away some of the clutter; the flat's being redecorated throughout, including painting the new MDF cupboards fitted last summer; I'm replacing the curtains in a couple of rooms (including curtains which I grew up with in the family home all my life and which are older than I am - I loved them dearly, but it's now time to say goodbye to them!); I'm getting rid of some furniture which was too big for the space, and switching a junk-shop bedside cabinet with a nicer one; old faded lampshades are being replaced; a new mirror, shelf and towel ring will be installed to match the new vanity unit I had put in last winter; and new carpet's being laid throughout the flat. New prints and pictures will be hung, a few little repairs are being done, I'm changing the layout of my bedroom, and I'll be replacing my slightly threadbare towels and bedding. So it'll update both the cosmetic appearance, and the organisation and tidiness of all the storage systems, and should make an enormous difference.

That this is happening is largely down to my good friend Thea, who (amongst her other skills) runs a property management company and has loaned me her great team of builders / decorators, who are wonderfully taking care of all of this (under her watchful eye as project manager) to make the process as stress-free for me as possible. She and her colleague came and spent a day packing up all my books, clothes, photo albums, cupboard contents, and assorted oddments, labelling and storing them all neatly and efficiently - it would have taken me literally weeks to do that on my own, if I'd ever even have managed to summon the energy to start it at all! It's just fantastic to have such willing help and support, as well as expertise, and has made the whole process feel manageable and exciting again. (Although the plan to have a new kitchen put in will definitely be postponed for a while....)

However, it still involves a lot of work, dust and mess, so I've moved out for a couple of weeks, both so that the builders can have unimpeded access, and to spare me living in temporary chaos.

I've spent a week staying with my sister Belinda and her family, who have been extremely welcoming and accommodating, and it's been lovely to spend some time with them. All the same, I don't want to impose for too long, and although over the last few weeks it's been exciting choosing paint colours, light fittings, carpet, coat hooks, curtain fabrics and rails, storage solutions, etc, it's also been fairly intense and at times a bit daunting. I squeezed in another trip to Scotland for a few days in May to see the healer again, and although the sessions were useful, it made me realise how how exhausted I still feel after the chemo and radiation, and how hard I find it to switch off mentally. So I decided to go away for the second week of the refurbishment, and chose the little-known Greek island of Lefkada to rest, relax and recharge.

Unfortunately I've been quite unwell this week, with a nasty viral throat infection (I'm extremely grateful to Belinda for looking after me so wonderfully), and yet again it's been touch and go as to whether I'm fit to travel. I spent all day yesterday firstly at the GP (who told me I should cancel the trip), then having blood tests at Chelsea and Westminster, then going on to the Marsden for a second opinion, and finally getting the all-clear after talking to a very nice doctor there late yesterday afternoon. It's a horribly stressful roller-coaster: of course I want to be sure that I'm well enough to go away, and that I'm not putting myself at risk of becoming ill, but it's a risky business asking doctors, as if you're told you shouldn't go, you're then travelling against medical advice and you invalidate your insurance (not that any insurance will cover me for anything cancer-related anyway, so even if I'd cancelled I wouldn't have got any refund). So I'm incredibly relieved to have been given the green light, and am hugely looking forward to setting off this evening.

I'm aware that there will be quite a lot of unpacking to do when I get home, as well as (I hope) some more throwing out of unneeded clutter, deciding where to hang all the new prints, re-storing things more efficiently and so on, but I hope that coming back to a nice new-looking flat and feeling refreshed from the holiday will make it not so much a chore as a rewarding and satisfying process. I'll only have occasional internet access in Greece (what a treat!) but will update you when I get back. Till then, I'm off to the sun - can't wait!

ON BEING NON-EMPLOYED

noreply@blogger.com (Sylvia) — Sat, 25 May 2013 18:50:00 +0000

It's more than two and a half years now since I last worked. Although I was pretty numb and in shock after my diagnosis in November 2010 and couldn't really think straight, one thing I knew very clearly was that there was no way I could carry on working while I was having chemotherapy. Part of that was the unknownness of how I'd tolerate chemo, but it was also because I knew there was no way I could carry on offering psychological therapy in my state of mind. It might have been different if I'd been working in another field of psychology, but HIV has a lot of parallels with (my) cancer: a serious, incurable and potentially life-limiting condition; where the medication aiming to control it can have very unpleasant and toxic side-effects on major organs, and decimate the quality of life; the uncertainty about when it might develop into progressively worse stages; plus the fear - even if much less likely these days for HIV - of a horrible death as more and more of the the body ceases to function.

I knew, without even having to think about it, that this was all far too close to the bone for me to be able to work meaningfully with clients. For the first few months after diagnosis I was almost completely disconnected from my emotions, and that was how I coped; but it would have impossible to do good therapy in that state. There was also a very real possibility that client work could have stirred up in me emotions I wasn't at that time able or ready to deal with; and if I'd become swamped with my own stuff I'd have been unable to help clients. There was a danger I might have found it hard to sympathise with problems which could seem trivial compared to cancer, but been simultaneously terrified of hearing about how much worse life could get. Without being able to offer the right balance of empathy and distance, it wouldn't have been ethical to try and continue doing therapeutic work. (Probably this was why I also had no desire at that stage to meet anyone else going through cancer, feeling that if they were better off than me - such as having "only" a treatable primary cancer - I'd feel impatient with them and more isolated; but if they were worse off than me - having symptoms or pain or widespread metastases - I'd be scared of what might be in store for me and resent having to try to be sympathetic when I actually didn't want to hear about their situation.)

Wanting to be neither one extreme.......

.....nor the other

So it felt clear that taking sick leave was the right decision, and I'm very grateful for the generous sick leave that was available. However, after a year I had to decide whether I wanted to come back to the job or not, as it was unfair on the department not to be able to recruit into my post. At that time I was spending 10 days out of every 6 weeks in Germany, plus although things were relatively stable I never felt (and still don't) that I could take it for granted, and I couldn't see any way I could commit to taking on clients for therapy (which can last from a few weeks to a few months, and sometimes longer). Looking back, there was probably also a fear that I'd be somehow tempting fate, and that if I were to make commitments for more than a few months ahead I might suddenly deteriorate and have to stop again. Stopping work after being diagnosed, I threw all my energies into winding up my responsibilities tidily, either finishing with or handing over my dozens of clients, writing up detailed discharge reports and so on, and although at the time it was a welcome focus and I took pride in making a good ending, with hindsight it was pretty traumatic to leave a job of six years with two weeks' notice - and perhaps I couldn't bear the thought of having to do that again.

In addition, although I'd absolutely adored my job for the first few years, I'd been feeling increasingly stuck, as there was no opportunity for career progression. I'd known all along that there wouldn't be, but I simply couldn't imagine another job offering the same satisfaction, and it was becoming more and more frustrating to want simultaneously to leave and to stay. So it seemed wrong to go back into a job where I was beginning to feel trapped - it would have felt like a backwards step. I could have arranged to do only non-therapy work, but therapy was the main bit of the job I found so rewarding and stimulating; plus doing a purely admin role would have been a huge demotion, and given that my main dissatisfaction with work was not having as much responsibility and opportunity to make my mark as I wanted, it would have been doubly demoralising.

So I decided to leave, and overall I've never doubted the rightness of that choice. I took retirement on the grounds of ill-health (which was granted remarkably promptly, given the diagnosis of metastatic cancer), and now work feels like a distant memory: a phase which was long ago and feels quite separate from my current day-to-day life. Once in a while I feel guilty that I should be doing something productive if I'm capable of it, even just voluntary work, but mostly I'm grateful that I don't have to encounter the additional stress of work-related commitments, and that I can keep my environment mainly under my own control. Besides, it feels like a full-time job doing all my various therapies, and I don't have much energy, and I can't think of any job that would fit around the unpredictability of my situation (I feel quite superstitious, and even if I'm feeling OK today, I can't count on it being the same tomorrow, let alone next month). And although sometimes I worry that I've become too focused on my health, too caught up in a full-time patient role, overall I don't in any way want to be working right now, and it's a relief not to be expected to.

Until, that is, my practising certificate recently came up for its two-yearly renewal. Two years ago I was on sick leave so I renewed it without a second thought, but this time round I can't: to be certified as a practising clinical psychologist you must be either employed or keeping up with the Continuing Professional Development (training, meetings, conferences etc) required. As the terms of my medical retirement are that I've been signed off as unfit to do my job or anything similar ever again, there's no way I can pretend to be eligible to stay on the register.

And, totally unexpectedly, that's knocked me for six. As I said, I don't at all want to be working right now, but I guess I'd had a nice little fantasy that maybe one day if I felt well enough and confident enough that I'd stay stable, I could perhaps do some consultancy work, or run some kind of training, or do a bit of freelancing. But unless you're registered, you can't practise as a clinical psychologist (and to re-register I'd have to get a medical certificate contradicting what the previous one said, stop my benefits and change my tax status, then do a substantial amount of CPD - which is tricky to access when you're not employed - to prove that my knowledge and skills were up to date). Realistically, I can't imagine that happening. I haven't ruled it out - I know that occasionally miracles do happen - but I can't see myself in a position to go back into employment as things stand at the moment.

So I'm facing, for the first time, the reality that I'll probably never work as a clinical psychologist again. And it feels utterly devastating. I worked so hard to get onto a training course, and to get my doctorate and qualify; but more than that, the decade I spent training and in my job was such an amazing time. It opened my eyes, it helped me articulate what I felt and believed, it enabled me to think critically and see things from a variety of perspectives, and it gave me the opportunity to do work which I found fascinating, ethical, challenging and exciting. In my job I found like-minded people, with similar social and political values, and who were committed to human rights, respect for clients, and empowering some of the most marginalised people in society.

I appreciated it all the more because during my twenties I'd done work I found interesting and enjoyable (hypnotherapy, stress management, on-site massage treatments in companies, and odd bits of reception work at a complementary health centre), but never really had any sense of vocation or ambition. In clinical psychology I discovered a profession which I had passion for, which I was good at, and which I seemed ideally suited to; and it was incredibly stimulating and motivating. I'd never before found my niche in such a wonderful way, or done work which I really believed in and felt energised and inspired by. It gave me a sense of purpose and direction, along with a strong connection to colleagues and clients, and allowed me to be part of something bigger than myself. And although I was still on a low grade because of the structure of the team I was in, I'd reached a level of skill and expertise from where my career could have flourished.

When I stopped work, I was so focused on believing I was about to die that I didn't really deal with what it meant to lose all that. It was a relief to be out of the inflexibility of the daily routine and the rush-hour commute, but otherwise I didn't really think about it, and when I did, I still felt and thought like a clinical psychologist - even now I still read the journals and talk to my ex-colleagues about psychology issues. It's true that I've become increasingly aware of how marginalising it is not to work, and although my friends are pretty sensitive, for the majority of them work is a fundamental part of their sense of who they are and their reason for getting up in the morning. So I'm conscious of feeling "different" and out of synch with my peer group, who by and large expect to have choices about their career and to have many more years to develop professionally. But I avoided thinking about it in much detail, telling myself instead how lucky I am to have family and friends, and financial stability (which are of course incredibly valuable, and without which life would be profoundly more difficult, distressing and demoralising - but they're not the same as having a career you love). I therefore managed pretty well to ignore what it really meant to me, until I had to formally declare myself as out of the game, and discovered how painful it was.

So I procrastinated for weeks about filling in the form to be taken off the register; and signing and posting it felt unbearably final. I don't think I was capable of dealing with the loss of my professional life and identity until now, so maybe it's a good sign in a way that I'm gradually coming to terms with how irrevocably cancer has changed my life and prospects. But all the same, now that I'm truly confronting the reality of it, I'm gutted.

POSITIVE THINKING REVISITED

noreply@blogger.com (Sylvia) — Fri, 17 May 2013 16:46:00 +0000

Overall I'm doing OK, but now that I've finished my course of steroids I'm noticeably more tired and weary again, and have to pace myself quite carefully. My appetite isn't great, my digestive system gets inflamed and distended, and I have some discomfort in my liver at times. I suspect these are the effects of the radiation treatment - at least, I hope they are, and not signs of the cancer spreading. It's hard to avoid being quite neurotic about any body changes.

Over these past couple of months (since the last scan, in fact) I've been thinking a lot about the issue of how much control I actually have over the cancer. I've encountered many people who strongly believe that cancer can be influenced by your attitude, and that it's possible to "beat it' if you're determined not to give up. Since my diagnosis I've acted on the assumption that that's true: I've set about doing as many alternative therapies as I can fit in, not only for their actual effect on my body but also in the belief that if I feel I'm doing everything I can, I'll be more positive and therefore will have a better chance of being healthy for longer (a kind of placebo effect). I found it very frustrating that the Marsden doctors didn't appear to believe that you can do anything at all to help yourself, not even following a healthy diet (they believe diet can be a major contributory factor in causing some kinds of cancer, but weirdly, once you have it, diet apparently makes no difference). I found that a horribly helpless and disempowered position to be in, so it was far more appealing to follow the more hopeful messages from alternative practitioners that you can do lots to improve your chances.

Right now, though, I feel quite mixed about that belief. From my experience it works wonderfully if you get good results, the treatments work and your scans show improvements - you can feel pride in your "achievement", take some credit, lap up compliments from people who tell you how impressive you are and how well you're doing. But what are you supposed to make of it when scan after scan shows increased tumour growth, when gruelling treatments seem not to make any difference, when reducing your life to "focusing on your health" appears to have been all for nothing? Does this mean you're not being positive enough? that you haven't been trying hard enough? that those lapses of mood when you're exhausted and afraid and resentful about how your life's turned out, and grief-stricken for the future you no longer have, are, in themselves, the reason that your body's deteriorating, because you've allowed in negative thoughts?

(A few people have suggested that I don't know how much worse things would be if I hadn't been making all those efforts to stay well; I understand that their intention is to encourage me, but in fact it's a total heartsink. If all my efforts are having a small effect in slowing down the rate of growth, it'd mean that I mustn't slacken off at all, ever, and if I want things to improve I have to work even harder. I'm reminded again of that quote from Alice through the Looking Glass, where the Red Queen says," it takes all the running you can do, to keep in the same place. If you want to get somewhere else, you must run at least twice as fast as that!")

And it's not just flakey alternative practitioners who believe this - it comes up everywhere. Modern Western thinking tends to assume that everyone's basically in control of their life, and that we end up where we do because of the choices we make. The whole "American Dream" is predicated on the assumption that you can achieve whatever you want as long as you work hard enough, believe in yourself enough, and never give up. If you don't like your circumstances, it's up to you to change them - and this appears to be linked with the metaphor of "fighting" cancer, which is so widespread as to be taken for granted. In obituaries, dying of cancer is described as "losing a long battle" - yet dying from a heart attack isn't seen as defeat, or failure to have overcome heart disease. But what exactly are you supposed to be fighting, and how? It's your own cells which are out of control and not working normally, but then that's the case in many diseases. Yet there isn't the same discourse about "keeping a fighting spirit" for any other illnesses: no-one expects those with arthritis, or Parkinsons, or pneumonia, to cure themselves by thinking positively, or tells them that they mustn't give up fighting.

So what is it about cancer which makes it viewed differently from other diseases? Some possible answers come from Susan Sontag, who wrote an excellent book about how we characterise and think about cancer ("Illness as Metaphor"). She notes how tumours are defined as benign or malignant, as though they have personalities and intentions of their own, which adds to the fear and stigma surrounding the disease. Cancer is talked about as if it's an evil predator, or a serial killer who could strike anyone at any time, or an insidious parasite silently spreading through the body in order to destroy it. (This is all specific and unique to cancer - no-one would ascribe sinister intentions to the plaque which clogs arteries and leads to heart attacks, or describe diabetes as the pancreas deliberately trying to starve the body of insulin....)

Related to this is the language of cancer treatment, which tends to be predominantly drawn from military metaphors - there's "the war on cancer"; cells which multiply are described as "invading"; cells which have mutated are described as "rogue cells" (like terrorist groups who try to subvert civilised society); the body's portrayed as "under attack"; and treatment is seen as a counter-attack, where collateral damage to healthy cells is inevitable and justifiable, and a weakened immune system from treatments leaves the body "defenceless" against cancer spread. As if cancer treatments weren't hard enough already, this metaphor portrays your body as the battleground between doctors and your abnormal cells, while you impotently watch each skirmish and claiming of territory - not a nice image at all!

Sontag argues that one reason why cancer is viewed and talked about in this way is that it's so poorly understood, which leaves it open to the projections and fears of society. Causes of cancer are probably multi-factorial, and are likely to be different for the more than 200 different types of cancer that exist. Some causes are reasonably well understood, for example environmental carcinogens like asbestos and tobacco (causing mesothelioma and lung cancer respectively); diet (some colon cancers); alcohol use (mouth and throat cancers); hormonal abnormalities (some breast cancers); or viruses (cervical cancer). However, if there's a common pathology, as hypothesised in genetic and immunological theories, it's not yet known.

Sontag suggests that the mysteriousness of cancer therefore lends itself to theories of causation such as the idea of a 'cancer personality" (someone who's self-effacing, puts others before themselves, represses emotions, especially anger, and leads an unfulfilled life) - although this has never been substantiated by research. Sontag points out that all significant diseases, before they were fully understood and treatable, were believed to be caused by personality and lifestyle or morals: in the 16th and 17th centuries, it was believed that "the happy man would not get plague", and before the TB bacterium was identified, TB was viewed as arising from an excess of passion. Chinese and Ayurvedic medicine see illness as an imbalance in the emotional or spiritual dimension as much as the physical body (as indeed does my healer in Scotland). Thus cancer is perceived as a disease stemming from individual "defects" (whether the fault lies with genes, emotional patterns, lifestyle, response to stress or whatever), prompting those diagnosed with it to question "why me?" - which someone contracting cholera, for example, is very unlikely to ask.

At the same time, there are no clear explanations for why some people do so much worse, or better, than expected, even with the same type and stage of cancer. So it's easy to see how the idea that it's your attitude which makes the difference between whether you fight or give up, and from that, whether you'll live or die, took hold.

Don't get me wrong, that idea can be very liberating - it offers a way of trying to make sense of why I have cancer - but the flipside is that it implies, essentially, that people get sick because there's something wrong with them or in their lives, and if some people can choose to cure themselves and not die, then it logically follows that those who do die must have not wanted to live enough, or didn't change their lives in the right way so as to restore balance and purpose or whatever. I'm not suggesting that anyone is actually blaming me for my scans getting worse and worse over the past year, but it's difficult not to feel that somehow I should be doing more, or that I can't be doing things right.

I wonder if the belief that cancer must be partly within our control is a defence against the awfulness of facing the possibility that there's nothing which can be done. I appreciate how hard it is witnessing someone go through cancer (having watched my mother die from it): how desperately you want there to be something you can do, but as there isn't, you want there to be something they can do, even if it's simply having or maintaining "the right attitude". I'm also aware that if someone with cancer is positive and upbeat and cheerful and optimistic, then it conveniently makes it much easier for everyone else not to have to face their own fears and distress so much.

This cartoon really resonates with me because I know that I frequently go along with this subtle pressure to be positive and upbeat, so that I don't have to deal with other people's distress. By me being "strong", other people can reassure themselves that maybe it's not so bad after all, or that I've got a better chance than most because I haven't "given up". It's very hard to resist the impulse to make things easier for other people, but occasionally I try it out, and the most recent time was when my hairdresser (who knows I've recently finished chemotherapy) asked me when I'll get the all-clear. I explained that actually it's gone too far for that, and that having no more chemo to go through is because there's nothing left to be tried, not because I no longer need it. Bless her, she handled it pretty well, considering, but I find it almost unbearable to witness that moment of horror in other people; plus I felt a bit guilty afterwards because it seemed unfair to foist the details onto her. It's so much easier to make light of it, or lie, or not correct people, to spare both of us.

I'm also conscious that the uplifting "good news" cancer stories (that modern medicine is advancing day by day, that many cancers are now treatable and curable, and that noble doctors and researchers are making breakthroughs all the time) is what everyone wants to hear. Having a form of cancer where, in contrast, there aren't further treatment options, and that's deemed incurable, can feel somehow shameful, as though I represent the ugly truth that no-one wants to face and I'm throwing cold water over the cheery hopeful stuff.

So I can understand how, collectively, we want to believe that such a scary disease can be controlled by us controlling our thinking. Yet I'm coming to realise what an intolerable burden this idea of "positive thinking" places on the person with cancer. Despite knowing that well-meaning compliments on how positive I am are intended to encourage me, it can feel as though I'm expected to have the power to halt (or ideally reverse) the cancer, and that it's all my responsibility. And that if I don't manage that, then I've failed - I've been "defeated" - not stayed strong enough - given up - not fought hard enough. I hate it.

Plus it makes every single decision - whether to make myself get up early to go for a swim or stay in bed to rest longer; whether to eat a piece of birthday cake so that I'm "living life fully now", even though some theories suggest that tumours feed off sugar, etc etc etc - into a life-or-death decision, and fuels the fear that if I get worse and die it'll somehow be my fault. It's absolutely exhausting to be that vigilant, and to feel that I mustn't ever relax or let my guard down. (Of course I realise that this pressure comes from my own perfectionist tendencies, but what I hope I've explored in this post is how social views, and ways of thinking and talking, can feed our insecurities and fears. I'm hoping that identifying these discourses will help me to feel less unrealistically responsible, blame myself less, and enjoy myself more!)

So, realising how stressful and anxiety-provoking my previous ways of looking at the world are, I'm definitely questioning and challenging things at the moment. I haven't worked out where I stand, but it feels good to be thinking, "hang on, do I really believe this?" rather than simply trying harder and harder to "get it right". None of this means I'm questioning the point of trying to be as healthy as possible, and I'm certainly not depressed, or regretting how I've coped up till now. On the contrary: compared to thinking "how my life turns out is entirely in my hands, so it's up to me to keep myself alive every second of every day", the idea "what if my life path is already mapped out, and within that it doesn't much matter what I do, so I might as well just enjoy my life" is incredibly liberating and would be a huge relief. Of course it's hard to simply choose a new belief system overnight, but I'm experimenting with "if I believed this, what would that be like?" and it's certainly very interesting.

I imagine that everyone reading this will have their own beliefs about how much we as humans are able to shape our destiny - from "we create everything that happens in our lives" through to "we're completely in God's hands / our destiny is outside our control" and everything in between - and I take some comfort in knowing that it's not just me who struggles with these philosophical and existential challenges.