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.
Write a poem a day challenge
Prompt
Silence, silence, silence.
The clock ticks measuring life
Time running away with me
To an uncertain destination
Do I want to go there?
I close my ears to its sounding
Observe the tick from far away
Breathe it in, breathe it out
My gateway to the Silence.
The sound dissolves in the Silence
Thoughts drift in and out
Like clouds drifting, drifting,
Inconsequential drifting far away.
I enter the silence and all is still,
Yet a stillness alive with something
A deep, deep peace, a letting go
Of all the busy, maddening thoughts.
Silence envelopes, encompasses me.
I enter silence and silence enters me,
No longer separate, beyond connection,
One and indivisible, I am the Silence.
A day in the life
Today started with my waking at 7am and then falling asleep with the mug of tea brought to me in our daily ritual by my husband. I managed not to spill it by some miracle and also managed to stay alert long enough to have my first pill of the day which helps counterbalance the damage to my thyroid which is a side effect of the cancer drug. I need to have that on an empty stomach and somehow managed it in between drifting off. I woke up for long enough to read a chapter of my current book, drink another cup of tea courtesy of Jim and eat my usual breakfast of a banana. Thank goodness for bananas because they are not only packed with goodness but are tolerated by my system when the nausea and stomach cramps kick in. After another hobbling sprint to the toilet, the next on the menu were my loperamide to slow my digestive system down. I washed the next batch down with the tea, two different ones to control my high blood pressure, also a side effect and when needed a little something to keep an acidic stomach from burning any more holes in my gullet. I have not had any problems with that since it was first discovered but my body has enough to handle without falling foul of that again.
I nodded off again and woke with a start at 11am realising that I needed to take my first round of the cancer drug, axitinib which I did accompanied by my third cup of tea of the morning/ Jim is an excellent and attentive tea provider. We laugh about it as being his way of demonstrating his love. He does occasionally augment this with a surprise bunch of flowers from the supermarket.
The ritual shower, application of lotions and potions to the face to fend off the ravages of time and illness, the massaging in of my own blend of essential oils to feet, knees, back and belly. followed by dressing for what remained of the day. I was officially having a dozy day, exhaustion being the other gift of the life saving axitinib.
It was another lovely Autumn day with warm sunshine after a cold start. I love the brisk coolness of an autumn morning when I know there is sunshine on its way. It is always good to breathe in the changing air of the Fall but more than anything it is simply good to be alive.
I was able to wrap up an spend an hour pottering in our newly landscaped garden, planting bulbs and spring flowers in the 5 metre long raised bed and plotting the planting of shrubs and perennials in the remaining area which Jim will plant at my direction. My poor damaged back complains if I bend and stretch a little so I do a little as often as I can.
It was a good day with not a lot accomplished but I managed to tick a few items off my list and the nausea wore off which is always a happy period. Tomorrow I have a lot to consider, analyse and draw conclusions on so I shall hope for a day that is not such a sleepy one.
The end and the beginning
I saw the Haematologist who gave me a good physical examination but did not pick up on anything. An external examination does not reveal much when you are as heavy as I was even although I had by then lost around 50lbs in around six months when it usually took forever for me to lose at all.
He believed that the levels of lambda protein while needing monitoring regularly did not constitute an immediate threat and believed that they were secondary to something else going on in my body. He believed it was either cancer, auto-immune or tuberculosis, none of which made me feel any the happier. I did offer up the hope that it might be tuberculosis as I could more easily recover from that.
He requested my GP book me in for an urgent referral to a Respiratory Consultant and after a fresh set of blood tests he sent me off with the prospect of MRI and bone marrow aspiration in my near future.
No one told me how long an urgent appoint should take so three weeks later when I phoned for my blood results, his secretary was shocked that I had not been seen. She phoned the hospital to be told that no request was in the system, and then on further enquiry that they had the request but it was marked as routine and not urgent. Apparently there had been a failure somewhere along the line and it was being treated as a routine and I would not have had an appointment for weeks when every day was leading me further towards death. This was not the first time this had happened which is why I diarise and follow up on every request for any appointment. I learnt through painful, near fatal trial and error. Read, learn and remember should you ever have the misfortune to be in this situation. This is your life and you have to take responsibility for it. You must be prepared to challenge and investigate.
It took a very persistent series of phone calls to the surgery and to the hospital to put things right. The sad story entailed more lost files, lost requests, misread requests topped off by the absence of any paper in the fax machine at hospital appointments office which was only discovered when I phoned to check. It sounds amusing in hindsight but at the time, I was desperately ill and had been trying to get an answer for over a year. It is nothing short of a miracle that I had the strength not to be rude but stayed calm and persistent throughout, simply emphasising to all that I spoke to the horrible alternatives which had been placed before me and the consequent need for fast action.
As soon as the Respiratory Consultant saw my file, I was in his office within four days. I met the man who saved my life, Dr. Patel on the 31st August 2009, five weeks after the urgent request. He was a delight, calm, reassuring and the epitome of competence. He took one look at my blood results and sent me straight for another immediate chest x ray. I was back with him in a very short time and he confirmed that my lungs were clear. He said he was amazed that a throat to groin ct scan had not been done yet and he ordered one there, marking it as very urgent.
I had the scan on the 15th September (we had a holiday booked in between, although I would have cancelled it if I knew what the scan would reveal). We had a beautiful week in the far north of Scotland, our little family, Jim, Jan and I. The remote cottage overlooking the wild coast was perfect and the air seemed to help my breathing, I could not do much but what I did gave me a blessed interlude from the hell of the last few months.
My appointment was on the 21st September and when my poor husband who had been with me at every appointment, was told by his managers at the Pensions Office that he could have no more time off. We were terrified he would lose his job as I was unable to work and had a limited income from a pension, so we had no alternative. He had made up and more for any time he had taken, always worked later than he was paid to and had come up with innovations that saved both time and money without ever being fully credited for it. It was a shameful way to treat him and I know many others who have been in that position.
My beautiful mother came with me and my sister-in-law, Linda, offered to take us there in her car. She waited with us in the busy waiting area and as I sat there I observed the way that the nurses were not looking me in the eye. As we were called in, I turned to my mother and said that it was going to be bad news.
Mr. Patel was very straightforward without being brutal which is how I prefer my doctors to be. As my mother held my hand, he told me my lungs and everything else showed as clear except for a very large tumour on my left kidney; the size being strongly indicative of malignancy. In his efficient and gentle manner he revealed that he had already referred me to Urology, sent all my notes to them and requested a second scan, kidney only with the contrast dye injected on the day to see exactly where the tumour was and if it had spread into the area around the kidney. Mum looked as though the life had gone out of her and she gripped me tighter, only just managing to breathe out the most anguished "oh Maria" I thanked him very much and told him that I was grateful and relieved to finally know what it was I was fighting. At the time I wrote "If I survive this, I owe him my life." I remained under his care for the cough which he believed is a form of asthma, which was probably a neoplastic symptom caused by the irritant produced by certain cancers like nausea and loss of appetite, Curious I had mentioned kidney cancer as a possible diagnosis because my assiduous research had shown the cough up as a rarer symptom. Nothing of course was done about it other than a non-committal "maybe".
So now my search for answers had reached an end and the battle for survival had begun.
=
No comments:
Post a Comment
I welcome comments and questions.