Day 8 - The immediate aftermath of diagnosis

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 Prompts:

Free write for ten minutes about the Full moon and what it means or doesn't mean to you. Do you feel any different during the full moon, do you even notice when the moon is full?

Word Prompts:

Full Moon
Moon Madness
Creativity
Water

Feeling Words:

Nostalgic
Impulsive
Dynamic
Bold


The moon illuminates the pool of remembrance
And I see the past that is not yet past, glimmering
Reflecting back the beginning that has not ended
The moon madness suspends the sense of time.

One might feel nostalgia for the past but not now
My life has evolved into acute consciousness
Intensity of presence in the eternal fleeting moment,
Where awareness of time vanishes from the senses.

Floating under the surface of the still silver waters
There is only peace and the magic of unknowing.
Time and space dissolve as the water ripples
A dynamic energy fills me and I rise beyond. 


The immediate aftermath of diagnosis

Mum and I held hands all the way home as she did her best to offer me hope and comfort, My sister-in-law was our driver and I worried that she was too upset to drive. As the reality began to bed down in my brain I could feel the relief of finally knowing in close combat with the anger about it taking so very long to get to this place. The anger remained with me for about a year and at least provided me with some external focus for the huge surges of emotion that I was to experience. For now, I had the hardest step of all so far; I had to tell my husband and our who was only 18 and in his first term at university. 

My mother kept me company and sat beside me until Jim came home. He sat down on the other side of me and as I told him, I cried for the first time. All the anxiety, fear and spirit crushing unknowing of over a year, finally cascaded out in flood of tears. Both Jim and Mum held me close, completely encompassing me in their arms as I sobbed continuously. My poor mother told me that she and my father would gladly take my place and I am ashamed to admit that I responded with a curt "well you can't, Mum"

All of my family knew how ill I had become, so frail and exhausted that I had missed the wedding of one of my beautiful nieces earlier in the year and had barely been able to leave the house. I asked Mum to tell my relations and Jim to inform his as soon as they could because they would be waiting to hear. I also asked them to tell them that I knew they loved me but could they please not phone my home or Mum because it would be too hard on us to constantly restate the same news. We would let them know once I knew what was happening. I also asked that they allow us time to come to terms with the news. Now, having met so many people whose friends and families inadvertently made life worst by constantly intruding, some more inclined to need comforting than to offer it in any helpful way. I took control and it helped. 

Our son came home from university to find us waiting very reluctant to tell him the news but knowing we could not keep him from it. We had kept him informed every step of the way as we searched for diagnosis but this was crunch time. We knew and he had to be told. We sat him down and I hugged him. I told him calmly that there was a large tumour in my left kidney and that it was almost certain to be cancer. I did not know how I would be treated for it but that it was survivable and that I would fight it. He held me in a great bear hug and told me that if I needed another kidney, he would gladly give me his. I already knew that this was impossible and I would never have allowed him to donate to me even if it was allowed. He might need that kidney one day. It is the measure of his love and strength that he immediately offered it to me.

Over the next few days as I hit Google search hard, I made it my business to seek out every scrap of verifiable, credible information about kidney cancer. What I found was of very little comfort. The likelihood was that this would be how I would die. It is a particularly vicious cancer which has a nasty habit of recurring, sometimes as much as twenty years later. Catching it early was the key to having a decent chance of outrunning it. The only potential cure was early detection and the removal of the kidney. That was only if it was confined to the kidney and had not spread. Spread to the area surrounding the kidney might also be surgically removed but it there was already spread to more distant sights, at that time, there was little which could be done. 

I knew I would have to lose my kidney but was relieved to find that the other usually took over the functioning of both. I thought myself lucky that if I had to have cancer in an organ, it at least came as a pair. Prior to April 2009 there were no drugs available in Scotland to treat the cancer and radiotherapy was ineffective as the kidney cancer tumours are radio resistant. I am only here today because of the courageous and tenacious campaigning of a small group of patients and their supporters who fought against the Health Service which had turned down the few drugs available on the grounds of cost and a spurious estimation of life expectancy. They were being used throughout the world but not in the UK with the honourable exception of Wales. The campaign produced a fundamental alteration in the formula for cost benefit assessment of such so called end of life drugs, capable of prolonging but not saving lives. I was just in time for the era of temporarily effective drugs for renal cell carcinoma.

I had swung into battle mode and my principle weapon was to be knowledge.

 A word of advice

Your life is not in the hands of your doctor, your surgeon, your clinical nurse specialist or any one of the wonderful professionals you will become well acquainted with. They are your team and ultimately you are the team leader. You have to take responsibility for whatever you have the capacity for. You must become knowlegable and you must monitor your treatment options and keep check of your appointments, chasing them up if they are likely to exceed the guideline you should ask for if you have not been told already, Do not slip into the shadows, fall down one of the many holes in a struggling medical system. You are not a statistic or a medical number. You are an individual and you must make that known to the people who will treat you. Be faultlessly polite, seek to understand their difficulties but be very persistent. Your life is at stake.