Day 5 - Staying with today and loving Autumn Days

Poetry Prompt: a 31 day poem writing challenge. This has given me the impetus to write the story of my dance with renal cell carcinoma. It contains snapshots of life lived on death row which I hope will give insight into how the dying cope with daily chemotherapy and the knowledge that death is on its way. This follows the poem and reading one or both is optional. 

I welcome questions and comments although they will be removed if they demonstrate an unkind disposition. 

Here's your challenge (if you chose to accept it): Write a poem influenced by your feelings about autumn. Do you see autumn as a beginning or the beginning of the end?  Chose at least three from this list of words below.

The words: 

                              chill

                              renewal

                              death

                              rebirth

                              harvest

                              melancholy

                              ageing

                              change

I love this Autumn of my life.

Its vibrant blaze of colours.

The melancholy drift of memories

Of a long and beautiful summer

Like a gentle, welcome haunting. 

I love the chill of the morning 

The mists that linger like my mind,

Soft clouded, a little out of focus, 

As I rise once more renewed

By the restoring gift of sleep.

I love the sense of such an ageing,

Falling away in the drift of leaves,

Transmuting the world and me

In the alchemy of dying and death

Welcoming whatever may be. 

I plant for Spring and hope. 

A daily snapshot of life with cancer

The nausea faded out as the evening turned into night so I felt much more comfortable, so comfortable and so tired that I slept through uninterrupted until nearly 10am which is very unusual. My poor husband pops in from time to time to make sure I am still breathing and missed out on his morning walk in the woods as he will not leave me until he makes sure I am up and well enough to fast dial if I need him. I always tell him that if I need him that urgently he is second on the list, emergency services will be first. We have had a few alarms in the last three years, two of which involved ambulances and fast trips to hospital so we have developed a black humour around it and about most other issues related to cancer. 

All was well until around 11 am when the curse of the bowels struck and I spent rather too long in the smallest room. At least there was no pain and just a little nausea. Sometimes there are horrendous stomach cramps which make me feel very sick so I counted myself lucky and took my loperamide starter dose. I had a gentle hour reading the latest DI Banks novel, murder most foul in the beauty of rural Yorkshire. Then came the next bout followed by the next dose of loperamide. I know that most of us experience this form time to time but when it happens almost every day, it gets a wee bit tiresome. It also causes dehydration and that is especially dangerous when you have cancer. 

The sun shone brightly in between very heavy rainfall so I was tempted out for a walk around the neighbourhood, We live in a long crescent moving gently up a hill and as we live at the bottom of the hill, I have a lovely circular walk which takes around 25 minutes. I can make quite a bit of speed up the hill, pushing my supportive rollator . This is a support frame with wheels and a little seat for when I tire which prevents me crashing to the ground due to balance issues. When I started I could only manage a half of the route and had to turn back when it became too much for my weakened body. Now, most days, I can manage the full round and at a much faster pace. I must have looked like a snail at the beginning and had to stop frequently. Now recently I have been managing two and sometimes three rounds a day depending on how fatigued I am or just how nauseous. This really makes me feel good and I am convinced it helps the fight again the cancer, It certainly helps blow the cobwebs away and brings me energy. 

I had a brief call from my GP who gave me the results of my fortnightly blood tests. These are critical because the cancer drug I take daily can lead to life threatening side effect which have to be dealt with quickly. My blood pressure had shot up last time the district nurses called to check it and to take my bloods. Fortunately, it has fallen again and it looks as though I will avoid having to take a third blood pressure drug. My other results were excellent and even my thyroid which requires medication had improved. Good results. Next visit from Dracula is in around two weeks in time for my four weekly oncology clinic. 

Every afternoon we Skype with our son who is in Taiwan teaching for a year. We use it as a debrief for his day at school and do our best to be an antidote to his very self critical mind. We offer him a little wisdom from our life experience or a little laughter. He is our heart walking out in the world and we are prouder of who he has become than of anything else we have done in our lives. He had a very successful day so we were very happy for him. 

Now it is getting late and I must take my second daily dose of axitinib and set it loose to shrink that liver tumour. I swallow them with my mind visualising them surrounding the tumour and any others that might be thinking of popping up, causing them to self destruct until they are swept harmlessly out of my body. 

I will continue the story of how this all began tomorrow. 

Day 4 Let the games commence.

Poetry Prompt: a 31 day poem writing challenge. This has given me the impetus to write the story of my dance with renal cell carcinoma. It contains snapshots of life lived on death row which I hope will give insight into how the dying cope with daily chemotherapy and the knowledge that death is on its way. This follows the poem and reading one or both is optional. 

I welcome questions and comments although they will be removed if they demonstrate an unkind disposition. 

Poetry Prompt for the 31 day challenge.

When was the last time you took a risk for something you believed in? How do you use your words? What are you creating in the world with your poetry? 

Word Prompts: 

Risk

Revolutionary

Reawaken

Reclaiming

Feeling Words:

Courageous

Energetic

Liberated

Spirited

Courage

You call me courageous

A warrior woman battling

This enemy called cancer.

I call it risk management

Managing the risk to my mind

When I cannot manage my body. 

We talk of fighting the enemy

But this is part of my whole, 

Not an external foe .

My own cells gone rogue

Waging their own revolution.

Declaring their liberation.

You call me courageous

Yet what is the alternative?

Do I raise the white flag.

Allow the cancer to take me?

Do I sob and cry and moan

Shrouded in dark depression?

Or do I rise from the ashes.

My spirit reclaiming life,

Phoenix soaring high

Until that last sighing breath

Carries me into the earth,

Liberating me from pain.?

I chose the energy of love 

Love of life and life of love

Holding my arms out and around

My fellow travelers on the road

Giving whatever strength I have

Through the power of my words.

A daily snapshot of life with cancer

This is now day 4 and as I continue the story of my past journey, I will attempt to give you some insight into what is happening today. I am on chemotherapy oral medication with some interesting side effects. I woke with stomach cramps around 2am which was the signal for a rapid trip to the toilet. followed by two more within the hour. Yet more medication kept that under control for the rest of today. I was tired and yawned through the day but rallied in the afternoon to enjoy the stimulation of a filmed interview with a man who is making a short film about my father who died almost two years ago. He was a remarkable man and I will tell his story in the future because his example helped me through the most challenging period of my life and helps me now. After the interviewer left, I transformed into Alice in Wonderland's sleepy dormouse. Then came the near daily wave of nausea with the reaching out for the sick bag which I managed to do without as it slowly subsided. Later in the evening the waves started again and I took one of my anti-nausea pills. I shall hope for a quiet night and a deep uninterrupted sleep. 

Continuation of my story - Let the Games Commence

Next morning saw me arriving at our surgery for an emergency appointment with our one female GP who listened to my tale of pain, blood and night sweats. Once again I had blood taken and an ovarian cancer test together with full bloods was ordered. She also ordered the blood to be tested for hormonal levels. She said she would arrange for another gynaecology appointment and ultrasound. I felt better for having taken action quickly and would urge anyone with similar symptoms to get help as quickly as possible. Timing of diagnosis is critical in treating cancer. 

A few weeks later I knew that I did not have ovarian cancer which was a huge relief. I was not going through menopause as the hormone levels showed that I was already post-menopausal which made the blood loss more concerning. The blood tests showed anaemia so I was prescribed a six month course of iron tablets . As a little bonus, my inflammatory markers were very high. Had I realised the significance of inflammation in the development of cancer,.I would have been far more worried.  My blood pressure was high so I was prescribed medication to bring it under control. It never crossed my mind that it might be my kidney at fault nor did it seem to occur to the doctors.  As I waited for the gynaecology appointment my symptoms persisted and I was becoming more tired every day. 

In August my appointment came through and a lovely consultant made a very thorough womb examination discovering a polyp which she thought might be the source of the bleeding. I also had yet another cervical smear. She took a womb biopsy which I have to confess was pretty painful. I did not realise that this was in the baby league of pain but that was a future discovery.She referred me for another ultrasound to check my womb. Around a month later the appointment came through and I reported back to a hospital which was becoming very familiar surroundings.  I struck lucky that morning because one of the radiographers did not turn up and they had to call the consultant down after his rounds to help out. I sat there, bladder ready to explode as they make you drink a great deal of water to improve the imaging. I remember one poor woman becoming absolutely distraught because she had been kept waiting so long. However, it was a good way of skipping the queue to be seen. My attention was fully on willing that it would be the consultant who saw me and so it transpired.He was an excellent communicator and kept me informed of everything he could see. It turned out that apart from the polyp and the fact that my womb looked as though I was about to have a period, the womb was healthy. 

It seemed to take weeks for the biopsy results to come back and when they did they were negative. So once again we had ruled out a gynaecological cancer leaving the whole field of potential diseases wide open yet again. I was temporarily so relieved that I allowed another two months to pass before I dragged myself back to the GP with ever worsening blood loss, exhaustion, random pains and a new, very disturbing chronic cough that was making me vomit almost every day. 

Have you ever longed to be told that you had something wrong with you? That was the worst aspect of those long months. The cancer word was shouting out in my mind over and over again. Now I wanted answers. My life was closing in, unable to travel without a large basin on my lap, coughing so badly I could not work and my voice deepening noticeably. I longed to know what the name of this illness was. I needed to know so I could fight it. This was like fighting a dark unidentified shadow. I had to know.

Day 3 - Clouds overhead

Poetry Prompt: a 31 day poem writing challenge. This has given me the impetus to write the story of my dance with renal cell carcinoma. It contains snapshots of life lived on death row which I hope will give insight into how the dying cope with daily chemotherapy and the knowledge that death is on its way. This follows the poem and reading one or both is optional. 

I welcome questions and comments although they will be removed if they demonstrate an unkind disposition. 

PROMPT: What brings sweetness into your life? Are you a chocolate lover or a Candy Crush junkie? Perhaps sweet food isn't your thing. What else is sweet to you? What are your indulgences?

WORD PROMPTS: 

• sweet
• candy
• sugar
• indulgence

Life seemed so sweet,

Each day an indulgence 

A merciful gift

Seemingly endless

Like long summer days.

Cast out of my Eden

Pain searing my being, 

Burning my mind. 

Obliterating all but

The scream of my senses.

Life had been hard

At times unbearable

But I had survived

After the bitter

Came times sugar sweet.

Waves of hot liquid

Flooding my body

Pouring in waves

Washing away all

But unbearable pain.

Life didn't speak

It swore and it shreeked,

Candied days terminal

Now for the testing 

The darkness descends.

So there I was in the middle of the night, saturated in sweat, nightclothes and bedding soaked, shaking with the shock of the sudden mind numbing intensity of pain, haunted by the thought that I might be dying. Alone with my fears, unable to call on either of my parents for help I was unwilling to disturb my husband and son who were in our own home. They had lost sleep often recently due to the problems with dad and his night wandering. This reluctance to trouble others and reach for help was something that the traumas of the following years brutally altered. However, on that June night, I was on my own.

Fortunately,as a psychotherapist,  I know some pretty effective tools for calming myself down and I am Mrs. Cool in a crisis, a jelly when it is all over. The edge had been taken off the pain by breathing into it and lifting myself away from it mentally. When the worst had passed, I cleaned myself up, changed my bedding and my nightwear, having cleaned and although the pain was still there it was manageable with a couple of paracetamol. The blood flow had diminished from a flood to a trickle so I was sure I was not about to bleed out.

I wrapped myself up in the duvet and with thoughts of death and dying on my mind. I used a system called Emotional Freedom Technique to calm myself down and let go of the fear. Exhaustion and the calming effects of EFT made it easy to drift off into a very deep sleep. I still do not know how I got through that night without calling for help but at some level I knew that it was not the time of my parting from this life, but it certainly felt like it.

The morning saw me back on the appointment treadmill starting with my GP. The feeling of being totally wiped out never really went away after that. I put on my usual cloak of invisibility and told no one until I had been to the doctor.

That habit of secrecy and the desire to protect stayed with me until I found I could no longer protect anyone, let alone myself, from the truth. The tendency came from my mother who was always the carer but seldom allowed herself to be cared for and from her fear of hurting anyone which lead to a life long habit of secrecy. That was all to change. 

I am sorry that this is being delivered a day late but the side effects of my many medications made yesterday a somewhat challenging one physically. However, today has been a better day so here we are.

Day 2 - Let battle commence

Poetry Prompt: a 31 day poem writing challenge. This has given me the impetus to write the story of my dance with renal cell carcinoma. It contains snapshots of life lived on death row which I hope will give insight into how the dying cope with daily chemotherapy and the knowledge that death is on its way. This follows the poem and reading one or both is optional. 

I welcome questions and comments although they will be removed if they demonstrate an unkind disposition. 

The writing prompt for today is an odd one but I will see what I can do with it,

"we will be inspired by the number and word, “two” or for those contrarians who have an issue about writing numerals, you may run with the adverb I used above in “There’s poetry,too….” or even the preposition, “to” as in “We went to the animal fair… the birds and the bees were there….” Julie Jordan Scott

Too much of a good thing

A jealous Fate watched

Sour with malign intent

"Let's rock her cosy world"

To stand on solid ground

Anchored in love and peace,

Fulfilled beyond all measure.

"Trip her up for our pleasure!"

Two great loves in her life

A passionate contentment

Too much for Fate to take,

"Now to grind her bones"

"Too much smug smiling,

Let pain become her ruler,

Build it slow and then let hell

Take her piece by piece."

"To think she is  so strong

That she can overcome.

Is simply absurd nonsense

And I shall come out winner."

Two great loves in my life

My husband and my son

I will fight for my life,

I will not leave them willing.

Let battle commence. 

So I should begin at the beginning which as the song says "is a very good place to start" or given the nature of my story, it was actually a pretty hellish place to start.

 I was 55 and after 25 years in retail management, primarily in innovative training and development. I had found my most fulfilling role as a psychotherapist in private practice. I adored my work and it gave me everything I needed from life, the use of my life experience, my gifts, my desire to help heal the wounded mind. I was in my element. I had the great joy to be in a very happy long lasting marriage with a good man who brought the gift of enduring friendship as I turned 35. We married a year later and at the age of 38 just as we had accepted that there would be no longed for child, our beloved son arrived. Who could ask for more in life?

In 2007 I seemed to be afflicted with one virus after another and when they arrived, they really wanted to stay long term. It was nothing serious but very uncomfortable and tiring. I just could not shake off the coughs, the colds, the flu like symptoms. I thought that it was all part of a late menopause as I was still bleeding a little intermittently. I had never had any major changes in the menopause, none of the dreadful hot flushes that so many suffer from, just a gentle shift which seemed to take a long time. Late menopause was common enough among my aunts so I thought nothing of it. 

The turn of the year came and I had developed a breath stealing cough which was beginning to disrupt my work. I used guided imagery and hypnosis so a hacking cough and a deepening voice was not conducive to relaxation, Friends and clients were beginning to notice that I always seemed to be unwell and a few of them mentioned their concerns about it. I am so grateful to them for this as it helped to raise my awareness of just how bad it was becoming. I have never been one to panic about health issues so I had dismissed what was happening as a temporary blip in otherwise good health.

I was beginning to observe a new pattern of increased bleeding and abdominal pain. I have always been conscientious about regular smear tests and took myself off for an earlier one than scheduled. The results were negative. I discussed my symptoms with my GP who took some bloods to check for ovarian cancer which to my great relief also came back negative. I was referred for an ultra sound scan of my womb which was also negative. I sighed with relief and simply accepted that I was going to be fine.

I was not fine, far from it. I continued to feel very weak and constantly unwell. However, my father was suffering from vascular dementia and my mother was unwell, so my attention was on their support and no longer on myself. Looking back I could see that I was dragging myself around, constantly tired and feeling like an alien in my own body. 

In June of 2008 I was staying overnight at their home to look after my mother and father as she had just come out of hospital and could not manage his various nocturnal adventures. As I lay in bed, I experienced the most intense pain of my life, as though my body was trying to split in half. I was soaked with sweat as was all my bedding, something I had never experienced before. I breathed through it as though I was giving birth and hideously slowly it receded. Then I noticed that I was bleeding very heavily. The game had changed and I knew that I was in deep trouble.The cancer word had been floating around in my head unacknowledged and now it was solidly grounded, a very real and concrete knowing. 

To be continued tomorrow when there will be another exciting chapter in cancer land. 

A word of advice.

Never ignore a persistent health problem. Always seek medical help and if it persists after initial investigation, keep on knocking at the door of your health provider until you get an answer. Your life is in your hands, not theirs. 

Day 1 - In the beginning

In the beginning

My intention for this blog is to give an insight into the life and thought processes of someone who is terminally ill, deemed incurable but without a specific execution date. As medical research advances, more of us who have been deemed incurable can claim extended life on death row courtesy of new drugs. They will not cure us but they can prolong our lives, by weeks, months or years, depending on the individual biochemical makeup.

Apart from the rollator I now use because of balance and fatigue issues, I have glowing skin, a blush of health on my cheeks and walk for around an hour a day. I am the healthiest looking dead woman walking you could ever imagine. Yet that belies the war going on inside me, the battle for my life, drugs versus a very aggressive kidney cancer. Then there are the side effects of the medication which are medicated in their turn producing yet more side effects, some of which might kill me faster than the cancer itself. Ah the joys of being the walking dead, not as glamorous as some popular television programs would have you believe. 

I have officially been walking the death walk since a day in late September 2009 when I was given my diagnosis of renal cell carcinoma, clear cell variety and deadly except when it is found early. Sadly my tumor was found about eight years too late and occupied a large part of the centre of my kidney spreading out in a long snake like extension into the vena cava and all the way up into the lower right chamber of my heart. Funny story about that diagnosis is that it came from a lung consultant I was referred to for what a haematology consultant thought might be a choice of cancer, tuberculosis or an autoimmune disease. Try taking your pick from that trio. 

I jump ahead of myself but this is just an outline, a taster for the story I will tell over the next 31 days of October. This is my variation on the theme of the challenge to write a poem every day for this month. 

I have been given three words to write this poem to : chrysalis, butterfly, transformation. Ah, hah, just perfect for writing a poem about dying. However as you will learn over the next month if you bear with me, dying is a form of shedding an old form and transforming into something different. It is also a setting free of so many thoughts, beliefs and assumptions. I will stay away from religion but I might stray into a kind of spiritual musing as I explore this change with you. I am open about where it will take me and I hope you will be too.