Debbie's thoughts on the Dying Process

DEBBIE’S THOUGHTS: ON THE PROCESS OF DYING

by Debbie Haffenden

1

“The joy of first thing in the morning when there seems a sense of the hope of the day ahead … not the year, not even the month. Just the day and all its simple potential.

A sense of heightened awareness of air, of colour, of life itself. How strange that the awareness of no life (death) should bring such clarity and joy to actually being aware of being alive. The simple act of breathing is so delicious and pleasurable.”

DEBBIE’S THOUGHTS: ON THE PROCESS OF DYING

CONTENTS: Preface: Jo-Rosie Haffenden …................................4 Introduction: Dr Ian Haffenden …..............................6 Debbie's Thoughts: Tips of Convalescing after major cancer surgery ..10 Tips on Living with cancer …...................................12 Tips on Dying from cancer........................................15

Main text............................................................16

New Years Day...................................................20

Words..................................................................21 Appendix 1: Debbie's Message .................................24 Appendix 2: Debbie's Life: some key events ….......25

Debbie’s Thoughts: on the Process of Dying

Preface

By Jo-Rosie Haffenden

Edvard Munch once wrote “From my rotting body, flowers shall grow and I am in them and that is eternity.” - I always took that quote literally, but now she is gone I see it in a totally different way.

My mum was an extraordinary woman. Yes, I would say that anyway because she was my mother - but in this case it also happens to be true.

In reading her journals and the tips and lists she noted down in the hope that someday they would be useful to someone else, you get a sense of that remarkableness - but here I want to add something more personal.

Mum once said to me, when I was sat on her bed during a ‘bad patch’ of the cancer, that she wanted her death to enrich my life. We talked the sentiment through and at the time, still grieving for the proactive and energetic mum I was losing, I couldn't understand it.

She felt that in the process of dying slowly, she could help us learn what she had learnt about being happy. She said that there were things she could only have learnt in dying and that these things could help us in living.

As she explained, I began to understand. She said that all the ordinary things - events and sayings and rituals that we had built up over the last 28 years of our being mum and daughter - would have new meaning once she had gone.

The regular things go uncherished - but they are the very best bits. Picture messages that she would send me of a bunch of daffodils she had picked from the garden; coffee and list making sessions on deck chairs in the summer; homemade Christmas crackers with quotes bespoke to each recipient. I had grown up with these things. They were normality and I never realized, truly, the message within them - or the weight of that message. I hadn't felt what it was like without the most stable of safety nets underneath me, nor known what it was like to need love, as it was always there in gallons and gallons.

These ‘ordinary’ things, she said, the gratitude for them as they leave and then the loss of them, would make me stronger, deeper and softer. It would enable a new respect for life and a new need to be proactive, to love and to need love. She said that life was only really about love and if you loved enough - all the other things would fall into place too. She meant love in the widest sense - not just people, but plants, flowers, events, feelings and situations: everything needed to be loved. She felt if you truly appreciated the present like that then you could experience true happiness.

After mum died we got the most incredible response from everyone: teachers, nurses, friends, distant colleagues. It seems what she left behind was a gap that needed to be filled - a gap that could only be filled by the individual who felt the absence. My brother definitely loves harder and is beginning to allow a softer side of him to come through; my dad appreciates nature and is showing a new, proactive side of himself who makes lists and does things as soon as they need to be done. I am trying hard to be more organised, to allow my drive to move me forward, to be decisive and progressive but also to be still and to appreciate (love) the present. Mums death has indeed enriched our lives and in a way that if she hadn't died they wouldn't have been.

Amazing that an individual can do that. Out of something so, so tragic, something positive can spring. Grief for someone you love so deeply is a bruise which must be cherished. It hurts but in that aching pain, every day, something progressive happens and we love a little more.

Debbie’s Thoughts: on the Process of Dying

Introduction

By Ian Haffenden

Debbie died of kidney cancer of the lymph glands on 19th January 2013. She loved life and living and leaving it was, for her, a wrench. From the start of her illness she tried to understand the process she was experiencing. She analysed her thoughts and feelings. She made notes. What is written below are those final written words. The experience of someone trying to understand the process of living with and dying from cancer. It was her wish that others may learn and benefit from her record.

Following diagnosis in January 2011, Debbie read all she could about her disease and its likely course of development. Like any person facing premature death, she wanted to know what the end was going to be like. She wanted to understand and give meaning to it. To this end she read all that she could find and had been published by others who had died from cancer. She found these texts very helpful as she prepared to set sail on her final journey and to play out the 'end game' as it emerged.

Here I will outline the development of the disease as a context in which to read her notes and guidance that follows. It is with a heavy heart that this is written.

The first signs Debbie had that something was wrong was a dry cough that developed in the autumn of 2010. It was persistent and got progressively worse. The doctor could not explain it.

A blood test and an X-ray showed nothing ~ kidney cancer only appears on scans: not in bloods or X-rays.

Subsequent blood tests, through the autumn and early winter, showed an increase in anaemia and she became lethargic and struggled with work (Debbie was a senior lecturer in education at the University of Brighton).

The GP did not know what to recommend but eventually referred Debbie to a chest consultant. He was concerned about her anaemia and ordered a CT scan of her chest to see if there was any tissue damage behind the cough.

The results of the scan identified that her lungs were completely clear. In the corner of the picture, however, under the left lung there appeared what was described as a large 'water filled cyst'.

This was followed up, immediately, with an ultrasound to identify the size and nature of this anomaly. The results indicated a large growth associated with her kidney ~ possibly a cancer. A CT scan of her abdomen identified that she had kidney cancer in her left kidney and the cancer was already the largest organ in her body!

It is interesting to note that the dry cough disappeared on this news: to the frustration of the medics! There was no explanation of this.

In March 2011 Debbie had her left kidney and the cancer removed and we hoped it would be the end of it. At the post operation meeting, however, we learnt that while the operation had been a success a few infected lymph glands had also been removed. They hoped they had them all but could not tell. We also learnt that Debbie's cancer was grade 4. The most aggressive form of kidney cancer.

The 'Tips on Convalescing after major surgery' section below was from this time: March/April 2011.

Following surgery we had the option of waiting a year to have a scan to see if Debbie was cancer clear or be part of a 'blind' trial. The latter would mean she would have closer attention and monitoring and a six monthly scan. We opted for the latter. She could always stop if the side effects proved too problematic.

If they didn't, there was nothing to lose in taking the precaution to maximise being cancer free.

Debbie experienced no real side effects, was convalescing, and preparing for her future. She had decided to resign from the university and return to her creative craft routes. She went into partnership with a friend and created and launched featherbed barn: a venue with a programme of craft courses.

Then the results of the six monthly scan arrived! Debbie found she had a cancer sighting in the lymph glands near to where the kidney had been removed: she was terminally ill. The double blind trial was uncovered. Debbie had been on a placebo. We now had to decide again on what action to take.

The cancer was low volume and so to try the first line drug (Sutent) seemed advisable; although the side effects – including mortality – were worrying.

We decided to give it a try. Debbie started on Sutent over the Christmas 2011 period into 2012. The plan was two cycles of drugs then a scan. Soon the side effects kicked in. She had a mix of lethargy and tiredness, constant ulcerated mouth, sore hands and feet, periodic split vision and migraine. She kept a brave face on it but the next scan indicated a second sighting between her heart and oesophagus. Still low volume but worrying. It seemed worth completing a second two cycles of drugs albeit the side effects were difficult to live with.

Between each cycle, I had my Debbie back as the person I knew for about a week before the drugs had their way and she was again, in part lost.

It was during the second course of drugs that Debbie's stomach began to ache and she started having problems with constipation. The latter a recognised side effect. However, whilst visiting our son in Reading it got much worse and Debbie was admitted to the Royal Berkshire Hospital. She needed an enema.

Following our return home, within the week, she was back in the local DGH for another enema! The next scan indicated the cancer now had sightings in the lymph glands around the intestines and lower back. The drugs were not stopping the progression of the disease.

Debbie was now offered an opportunity to be involved with an open drug trial at the Royal Marsden in London. We debated this course of action and decided that as they were a world-leading centre for cancer we had nothing to lose by undertaking the test for suitability. Prior to the test, during this break in the drugs, Debbie returned to herself again and we took our camper van to France.

We came home a day earlier than planned however to fit in with the needs of the Royal Marsden drug suitability tests.

Within ten days of the new drug Debbie was admitted to the local DGH with a swelling to the neck. She was diagnosed with a blood clot. This was finally rectified and for the rest of her life she self administered a daily Clexane injection to her stomach to keep her blood thinned. She was then also informed that she now had a new cancer sighting in the lymph glands to the neck.

Following a week in Wales with our daughter, Debbie came off the trial drug and chose to take a palliative route. She decided she would prefer quality time being able to be Debbie - than any increase in time quantity the drugs may have been giving her to nasty effect.

She was now however eligible to receive radio therapy to the neck cancer. This would reduce it and slow down its growth. This meant having a face mask made and a number of sessions screwed down under the mask for treatment. The treatment did help but the side effects of this was two weeks of a very sore throat. Debbie said it was like having 'barbed wire in your throat'.

The position Debbie was in now meant we would have to cancel our planned trip to the South of France: as Deb could not fly. Also our planned trip to Mull: there was no hospital there. We did visit Reading though and Debbie planned and went with her Book Club to the New Forest for a weekend. She was not going to give in that easily! She also planned and project-managed our daughter's move from Brighton to a new house within three minutes of our own.

However, as tiredness grew during the autumn of 2012 she became less able to complete items on her 'to-do' list. She spent greater parts of the day in bed with increasing problems with pain. At this time she said that given the choice she would die 'now' rather than go on as she realised that the person she had been was now significantly compromised: lost to the disease. We had

complete items on her 'to-do' list. She spent greater parts of the day in bed with increasing problems with pain. At this time she said that given the choice she would die 'now' rather than go on as she realised that the person she had been was now significantly compromised: lost to the disease. We had transcended the inevitable move from the 'hopeful' to the 'hopeless'. A stage that need be recognised and accepted. Shortly after this, Debbie had a week in the local Hospice. Whilst there she arranged a final meeting of the Book Club in the Hospice! She returned home with a syringe driver.

Not to be totally beaten, at this time Debbie decided that she would learn a new skill which could be done from the bed where she was most of the day. She decided to teach herself, from a book, to knit! She had her 54th birthday at home on the 20th December 2012.

The final 'Main Text' below was written from around this time.

Two days after her birthday, just before Christmas 2012, Debbie experienced high levels of pain, a Night Doctor was called and she was admitted the next day back into the Hospice. She believed she was dying and was upset the following morning to find she was still alive. She said she had said all her goodbyes and now had to go through it all again! Once the pain was controlled, however, she reverted to herself . We had Christmas Day in the Hospice and there were moments of joy during the day in which, I believe, she momentarily forgot her condition.

Her condition worsened with increased pain in the groin and the onset of some paralysis in the top of her right leg. This led to her falling over.

Typical of Debbie, she was attempting to change her clothes before meeting with some trainee doctors who were hoping to discuss the dying process with a her: as a younger patient able to articulate the process. Her collapse meant the meeting never took place.

What follows is: a short list of tips to be considered following major cancer surgery, then tips on living with cancer, followed by tips on dying from it: Debbie's final expedition/ journey notes. There are two appendix. The first is a poem from me that attempts to portray the key messages Debbie was espousing toward the end of her life, based on what she was learning and the second is a brief time-line of Debbie's life.

Debbie noted: “Why be 'normal' when you can be 'remarkable'” and “Each moment at a time: drink it in.”

Debbie’s Thoughts:

Tips on convalescing after major cancer surgery 1. Slow means SLOW ~ walk, talk, think slowly ...you may feel that you don't

look cool but mostly no one sees this.

2. Stop when it hurts.

3. Allow 2 hours to get up, shower and dress, so: 4. Never have visitors before 11.00am.

5. Ask people to stay no more than an hour (unless they are cooking for you).

6. Don't “entertain” your visitors – let them talk to you.

7. Get up, shower and get dressed every day you can.

8. Don't put loads of make up on - frequent naps may leave you looking like a panda! A bit helps though.

9. If you've been told not to lift or bend down for goodness sake don't!

10. Don't be afraid to take pain killers – your body has earned the right to them.

1. If you have a regular, trusted hairdresser ask her to come to your house

and tidy up your hair. You might have to pay her petrol but it's worth it.

2. However avoid new drastic haircuts. You need to feel as much like 'you' at this time as possible because it may take a while before your body feels like it's yours.

3. Ask visitors to bring a meal even if it's only soup and bread ~ almost as good as eating out!

4. Treat yourself to luxury indulgences, like chocolate, every so often you've deserved it but try to eat healthy main meals.

5. Listen and respond to your body cravings ~ it may be telling you what you're deficient in iron etc.

6. Before you sit down to 'rest' (not sleep) make sure you have everything close to hand – mobile, house phone, book, glasses, TV control etc..

7. Change position until you find a place where you don't feel the scar pain.

8. Think 'Sloth' when you move.

9. Be prepared not to do anything fast.

10. Try yoga type deep breathing and always move on an outward breath.

11. Don't count your progress in single days. One good day is often followed by a less productive one (two steps forward and sometimes 3 back) so count/ reflect in 3 or more days and keep saying “this time last week ...”

That way you will see progress; albeit small.

12. Don't be afraid of: “sitting down doing nothing times”. These can be good to empty your mind. But beware of using these times to think negatively.

Thinking of nothing particular or dreaming is better than thinking negatively.

13. Keep a 'pain diary' even if it's in your head. Every so often grade the pain level out of 5. If it seems high more often than not, speak to your GP, nurse or whoever.

14. Always ask “is this sensible?” before you do something vaguely active.

Debbie noted: “Extra-ordinary in so many ways … ...Life has been an expedition but so has dying.”

Debbie noted: “I am 'giving' by letting others do stuff for me – letting them give and relinquishing responsibility for the illness.” and “Recognize that when I need help it's not my failure of anything that brings this about. It's circumstantial.”

Debbie’s Thoughts:

Tips on living with Cancer 1. Recognize that when I need help it's not my failure that brings this about.

It's circumstantial.

2. Leave 'guilt' way behind..... this is not ours (or anyone else's) fault. It's just that shit happens.

3. I don't have to endure pain.

4. I am 'giving' by letting others do stuff for me – letting them give and relinquishing responsibility for the illness.

5. Recognize I'm not good at taking.

6. I need rest because my body needs rest.

7. I can cry.

8. I must be realistic with expectations.

9. I must listen to my body and not fight it.

10. I must take 'meds.' regularly.

11. Don't be afraid to ask for advice – it's my body that's not coping - not 'me'.

12. Recognize the need to revisit aspects of the grieving process many times.

In fact at each new stage.

13. Accept this is emotional.

14. Accept I will oscillate from being up, to being down.

15. Accept I will get scared, when I get better, of being ill again.

16. Accept I will get tired of 'coping' or trying to and then not getting anywhere.

Tips on Dying from Cancer:

Debbie’s Final Expedition/Journey Notes: In coping with dying from cancer, Debbie found it was extremely hard to look back or forward without intense sadness. Her strategy to make this easier was to categorise events into the following three boxes:

The Past Box

A place that is often very emotional to go to because we want more of it but also a place that makes us proud of all we've seen, done and achieved. A place to celebrate and be at peace with.

The Present Box

The only place to be most of the time! To enjoy and push boundaries a bit. Also a place to accept limitations as and when they occur.

The Future Box

A place that is far too difficult to go to for the patient. It is a place to be avoided because it doesn't include them. So it's like watching a film being played out of the life your family will have without you. But sometimes you can bear this when you reassure yourself that they will be OK and will have the skills to move into their own future. This is when you really have to let go.

Debbie’s Thoughts: on the Process of Dying

The main text

I want so much to write it all down in an effort to capture and to be able to pass on all that I've learnt but that's just not possible. Firstly, because there's not enough time and secondly there's not enough words to really be clear what is being felt or experienced. What I do know is that this “dying” has ironically given us so much that we didn't have before and that the strange time when we have been faced with the realisation of death as a finality has actively enriched and enhanced us.

Time to reflect can be good and be bad. In my case it has been a gift to an already fulfilled life.

I've always said: “there are problems and there are solutions”. It's true but I think there are actually fewer problems than solutions. It's finding the right solution which is the trick.

There wasn't a neat and easy solution to curing my illness but there were a range of ways of dealing with it. In reality I didn't choose or even think it through; we just did it. We've faced it, accepted it, cried with it, hated it and realised above all we can't fight it. So we've made it give back to us. The open and honest approach has put us in good stead yet again and has brought so much closeness with friends and our little unit.

We've learnt that to do something just because you can is a good enough reason. 54 years packed to the brim with crazy events and trips still isn't really enough but to face death knowing that you've done your very best will certainly help make some sense of it all. To go to places just because they're there and particularly to spend time with people because they are there has been so enriching.

Debbie noted: “We've faced it, accepted it, cried with it, hated it and realised above all we can't fight it. So we've made it give back to us...”

I want to write down every piece of guidance and wisdom I’ve learnt; but it was only in learning it that it is there. The children will all find their own ways not my ways. Some may be the same and some will be different. It doesn't really matter just so long as it seems right and comfortable to them. No-one can or should try to be someone other than themselves...and we're all so different, and we're all so ever changing so to really “know yourself” isn't possible in its completeness.

Death makes sense when living no longer makes sense. When to be asleep is easier than being awake.

I was really good at living but I'm rubbish at dying.

Can you actually die of the heart break of dying rather than the physicalness of dying? Because leaving is, for me, complete heartbreak, a wrench apart, a tearing off.

Debbie noted: “Death makes sense when living no longer makes sense. When to be asleep is easier than being awake...”

The final battle (a word I hate) between your head and spirit wanting to keep living to the absolute and your body not letting you carry on.

Would this be easier if it wasn't Christmas time? The last Christmas time? Yes, today would be easier if it was just another Monday in the year. There's nothing specific about an ordinary Monday to have to think about … but Christmas has always exemplified everything I love about the things I do.

It starts to make sense when closing your eyes and not thinking is so much preferable than the opposite … but not because I want this, just because it's calmer. Should I find a place when I stop thinking? (This makes me feel guilty and apologise) I will be happy if I can convince myself that you are all doing what makes you happy but me being in this stupid situation makes it impossible for you to feel happy and I know and see that. I desperately want to fix that and be calm for you as much as for me.

If I can finally (after years of yoga trying) learn how to reach a state of 'being' in my mind as well as my body then I can find a state we call 'peace'. I've never really understood what 'peace' really meant as it has always appeared to be the opposite of how I would describe 'me'. I've never wanted it really if I’m honest because I've so enjoyed being the energetic and joyful me but right now I crave 'stillness' ~ both physically and mentally. If I close my eyes and try to empty my head I can begin to achieve it. It's a very good place to find.

“If I can finally (after years of yoga trying) learn how to reach a state of 'being' in my mind as well as my body then I can find a state we call 'peace'.”

When you rationalise being told you have a terminal illness it's the same as being told you no longer have a future which goes against all we are programmed to do.

Do we therefore start preparing for death? Can we accept a future and an end altogether as one?

I've spent so long (maybe 54 years) being sure I can make some sense of life and living, and I believe I have succeeded in that endeavour. But making sense of the dying part, is far more difficult, it turns out! What I had thought was simply a matter of letting go emotionally and accepting that my body would choose to say goodbye just isn't the case. The 'letting go' is both emotional, spiritual and physical and needs to be in tandem or synchronized at least.

When it's not it's what I have now and leaves us with a need for calm and dignity and quiet. For me it is in not seeing people other than my Ian, Tom, Jo, Rich and Ruth and Hanna and Rich. No-one else matters as they do, but it is their permission I need to be able to let go truly. This is perhaps the biggest request I will make of them but until I really understand it, I just can't ask. To reach a peaceful sense of 'nothingness' is what I think I aspire to. How I reach it, or how I make everyone understand why I need this solitude is not going to be easy as it is so out of character for 'me' that was, ….. the 'me' I don't want to lose.

Even when we are faced with things that we can't physically overcome it is remarkable that we can emotionally readjust.

The need to hold on to the knowledge that it is my body that is closing down not my mind, is so important if I am to leave guilt and sadness behind.

Death should and does give meaning to 'life'. Knowing something isn't going to last indefinitely allows us to treasure it more deeply and makes us grab the moments as they happen. It's not about the purpose being: to create a bank of lovely memories (that is indeed a wonderful outcome) but the purpose of events is to treasure the actual moment whilst we are in it.

There are good times, there are bad times and there are new times. With cancer the new times can happen very often and very quickly; and we have to learn to adjust very quickly with each point of newness. It is accepting the changes which challenges our ability to retain any sense of control. To find a physical space like the Hospice where distractions and decision making is kept to a minimum, is a gift, a true place of sanctuary where these points in the day of 'nothingness' are both possible and acceptable.

I feel a sense of calm begin to emerge slowly and rather gracefully even when ironically, at the same time, the pain appears to be increasing and increasing.

The pain, the most horrible pain imaginable.

“Will I reach a point when I can feel satisfied that “I've done enough”? I do hope so. I'm sure it will feel delightful!”

Acceptance? What does this really mean in this context? To accept a piece of information as 'information' is one thing but this has to be followed by internalization of that information. Thus comes the battle to look at consequences and outcomes which we hope will give us a greater sense of control and understanding. The two stages are very different especially in relation to accepting soon-to-come mortality. Accepting / internalizing ~ entirely different and equally essential.

The Pain Cycle: 1) Break through pain needs control, 2) Controlled pain with no feeling, 3) Break through pain that needs control, etc...

There does come a point when lack of pain brings a sense of disbelief/ distrust because we know it is definitely coming back. It is this knowledge that is one of the hardest things to “accept”.... the return of pain and disease, the prospect/ knowledge of worsening. Ironically, I don't think its the concept of not being in this world (death) albeit a sad concept, which is hard to accept, but it is the making sense of the journey towards that point when part of the journey is tied up with physical pain rather than emotional pleasure or being physically free from pain. Pain takes over thought and causes what we see as distress, anxiety, fear even terror. It is perhaps the one time you are truly “in the moment” with an intense need for the “moment” to end physically.

The battle I face is not accepting this as a need (in fact it makes extreme sense!), it is in working out how your emotional and spiritual side can be in alignment/ in tandem with the physical need to withdraw. In the same way we need to find a comfortable physical position to relieve or eradicate pain, we also need to find ways to relieve or eradicate the most painful of our thoughts … the thoughts that confuse us with ideas of guilt, helplessness, sadness and lack of purpose. Wanting to stay in the world but accepting a very changed role in that world … a feeling that my job is done yet a world in which I would have liked to have given so much more creatively and intellectually. Will I reach a point when I can feel satisfied that “I've done enough”? I do hope so. I'm sure it will feel delightful!

Debbie’s Thoughts: on the Process of Dying

New Years Day

Opening the curtains to find a blue sky and the sunshine was like a tiny miracle.

The physical pain was still present but the fear of managing the next phase seemed so much less intense. I don't believe in miracles but I do believe in events that can give little glimmers of pleasure and purpose. Time is all I have as my body deteriorates but time is a gift only if I use it wisely. The biggest test of creativity is working out how to create the 'thing' in our imagination … this is no different but will need a 'can do' attitude that puts value in the process rather than the outcome.

Yet again the analogy of 'a journey' helps me so much. The turning of corners, the slipping at tricky bits, the joy of finding a new vista to motivate moving forward, overcoming the fear of unknown places … the analogies and metaphors are endless.

Chapter 15 (p171) from Somewhere Towards the End by Diana Athill – perfectly crafted to say so much. ... to explain from an atheist viewpoint if a life has been 'worthwhile' (which I strongly believe mine has). It is worthwhile to attempt to examine it. This also requires an examination of the dying part of life too. Complex, challenging but I believe worthwhile. Something worthwhile is also worth sharing or passing on which is perhaps the point of all this writing.

“Trying to live with cancer” is one phase and this seems to be followed by a phase which focuses on “Learning to die from cancer|”. This doesn't mean focusing on the dying as an event but facing ways that help us accept what the implications of this are. Not easy as pain takes over in a more major way thus allowing us to lose that ability to focus on anything. However, it does significantly enhance the experience of 'living in the moment' when the simple things of maybe just sitting with the ones we love are the event of the day.

Everything becomes so much simpler once we can let go of the bigger aims. It helps us notice them when before we may have taken them for granted.

What is it like being alive but aware of waiting to die? Can this be a positive rather than negative? Or is there something in between. Accepting what you can't or won't do again needs to be swiftly moved into what you can do, however simple. Like old age fast forwarded. There is simply no point focusing on what now isn't possible, but this has the potential to value the most simplest of pleasures, and is a way of life the 'not soon to die' can adopt and embrace into their own lives. In other words, you don't have to wait until you are told your death is imminent to reach out and value what is so good about being alive.

Debbie’s Thoughts: on the Process of Dying

Words

I need far more words than we have to help me explain what dying is all about.

We are so limited by semantics and restricted by metaphors and similes.

Physically we are sometimes restricted to a lack of clarity as the brain gets muddled by the number of drugs we're on, but in reverse, the periods of sleep/ rest/meditation have their place too. To stop thinking or finding words is as important as finding that physical position of stillness that can on occasions relieve the pain. But it is definitely finding the words that is impeding clarity.

“I found that as I permitted myself to confront the fact of dying, I was more truly embracing life.” from To Live Before I Die by Mal Walshaw and Elizabeth KublerRoss.

I'm existing by being able to breathe and talk and think but not more. It's not a bad thing to exist but not participate physically …. just not what we usually do.

Being on a journey yet not physically moving in that journey. The routine and structure of “normality” has gone but I still feel like a part of the travelling group.

A participant rather than an organiser maybe. Yes, accepting a change of role.

“Being on a journey yet not physically moving in that journey.

The routine and structure of “normality” has gone but I still feel like a part of the travelling group. A participant rather than an organiser maybe. Yes, accepting a change of role.”

New day, new challenges, new decisions. It seems nothing stays still with cancer. So an open mind and a willingness to embrace change is essential if you're to remain free from the intense sadness that having cancer can bring. I don't think you can exactly embrace the cancer but you can learn from it by working along side it. There are so many parallels with the physical and mental i.e. finding a comfortable physical position to free yourself from pain is similar to finding a way of looking at things to free yourself from anxiety that comes with accepting a terminal disease.

I think I came here to die or at least to learn to cope with dying either here or at home but so much has changed with a new development of paralysis. Acceptance of a different time frame shifts so much and requires constant change of thought which is difficult to adjust to.

Today I am so disengaged. I am just not here at all. That's how I feel ‌. here, yet not here.

(Debbie died a few days after these final words were written.)

Appendix 1 Debbie’s message

By Ian Haffenden

Make every day count Let every word tell Live in the moment For as long as you will Savour the colours In each and every way Our time is so precious Don't waste a single day Learn to dance in the rain Dance in the rain Lets dance in the rain On the negatives and the pain See a World full of possibilities See a World to be solved Be positive and creative Let common sense tell Find yourself and your beliefs Stay true to your Will Stay in the moment Let the Future Box be still and the Past Box un-fill Learn to dance in the rain Dance in the rain Lets dance in the rain On the negatives and the pain Speak kindly of others See daffodils in the Spring Be the friend you would have wanted Smell the Lilies and sing Learn to dance in the rain Dance in the rain It was Debbie's refrain To learn to dance in the rain

Appendix 2 Debbie’s Life: Key events

By Ian Haffenden

1958 - BORN 20th DECEMBER 1959 - Adopted by Cyril and Connie Young at 15 Chamberlain Rd sister to Stephen and Ruth 1963 - Entered Motcombe Infant School - met Polly and Paula 1966 - Entered Ocklynge Girls School 1970 - Entered RATTON SECONDARY SCHOOL 1975 - Entered EASTBOURNE COLLEGE of FE trained as a Medical Secretary 1976 - MET IAN 3rd APRIL when Ian gate-crashed a party! Ian proposes on 28th June. Holiday in France, then officially ENGAGED 5th NOV. 1978 - BOUGHT FIRST HOUSE - 54 Gore Park Rd. in January, MARRIED on 26th AUGUST honeymooned in Paris 1979 - Visits USA 1980 - Visits France & Switzerland. MOVED TO SECOND HOUSE - 12 Milton Rd. 1981 - Visits Holland. Went to live in SEYCHELLES Port Glaud, worked in National Youth Service, experiences mercenary invasion, visits La Reunion and Mauritius 1982 - Moved to La Misere experiences civil war and armed break into house! RETURNED to England (via Hong Kong), TOM BORN 12th DECEMBER 1984 - MOVED TO GUILDFORD – 31 Dapdune Rd., JO BORN 24th SEPTEMBER, becomes area representative for NCT 1985 - STARTS MAKING CHILDREN'S CLOTHES 1986 - Visits USA, starts Little Originals company 1987 - Joins PTA of Sandfield First School 1988 - MOVED TO 44 Agraria Rd, Little Originals at Farnham Maltings and then becomes mail order company, Visits Cornwall 1989 - Visits France 1990 - Visits Belgium 1992 - MOVE TO HAILSHAM - 2 Westdown Cottages, Gets Dog (Toby) and Ducks, becomes Chair of PTA at Hankam Primary School, Undertakes 'A' Levels, Visits France 1993 - Visits France 1994 - ENTERS University of Brighton on BA (HONS)

in Primary Education, Visits France. Plans Hall extension to house 1995 - Friend dies tragically. Visits Spain 1997- Visits France 1998 - PLANS and manages major house extension to Westdown Cottages. Graduates with a First Class BA Honors degree in Education and wins the Walker May Prize for Literature. Starts teaching at Pebsham Primary School 1999 - Visits France 2000 - Visits Morocco and France – first visit to Gournay- en-Bray 2001 - Appointed Senior Lecturer - Primary route at University of Brighton. Visits France and Italy 2002 - Visits Spain. Knocks kitchen and dining room into one.

2003 - Elected onto Hailsham Town Council. Visits Portugal.

Celebrates Silver Wedding Anniversary.

2004 - Achieved the degree of Master of Arts (MA) in Education, University of Brighton. Visits Morocco 2005 - Visits Poland twice and Italian Islands 2006 - Organizes re-roofing of Conservatory. Visits Ireland, Barcelona, France, Cyprus and Channel Islands 2007 - Re-elected onto Hailsham Town Council. Visits Venice and Mallorca 2008 - Visits Scotland and India. Enjoys being part of singing group 2009 - Visits France 2010 - Organizes Tom’s wedding to Ruth. Visits Spain and France.

2011 - Diagnosed with Kidney cancer. Kidney removed.

Visited Tenterden. Resigns from University and goes into partnership with Heather to create Featherbed Barn. Cancer diagnosed as terminal.

2012 - Camper-vans to France, goes to Hop Farm Music Festival. Visits London (Globe Theater), helps organize Hanna's wedding to Rich. Visits Wales.

Buys chickens. Visits Reading. Plans and project manages JO and Rich's move to Hailsham. Plans

and goes to book club weekend in New Forest.

Once bedridden learns new creative skill (knitting). Organizes a book club meeting in the Hospice! Returns home and has 54th Birthday.

Reenters hospice for Christmas.

2013 - Sees in New Year and Ian's 57th birthday.

Dies at 11.30 am on 19th January.