Day 6 - Closing in on a 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. 

Writing Prompt

Another day in the challenge to write a poem a day for October

Let's explore the idea of "perfect". What does perfect mean to you? Are you a perfectionist? What does your perfect day look like? 

Word Prompts: 

• perfect
• perfection
• perfectionism
• imperfection
• imperfect

Here I stand in perfect imperfection, 

Model of  contradictory conflicts. 

Here I am in the words of the song, 

"A will-o'-the wisp! A clown!"

I am who I am, happy in my skin

A skin I wriggled and wiggled in

Until in time I grew into it

To find at last  I loved the fit. 

The contradiction fell into place

I know them all so very well

And accept myself as simply me

Imperfectly perfect and happy to be 

A step further on 

I had become progressively weaker, simply unable to do the normal everyday things I used to, having to pace and adapt my life which was very challenging.. I had developed a very persistent cough which was also getting in the way of my profession, psychotherapy. Nothing helped; nothing soothed it or took it away. It exhausted me and robbed me of much of my pleasure in life. I knew there was something seriously wrong but having gone through all the stress of the waiting for results for the gynae stuff, unconsciously I feared putting myself through more. Apart from that, I still trusted my the NHS even if they had lost my hospital notes for six weeks and as a consequence delayed my womb biopsy results until I phone my consultant's secretary and asked her to put herself in my place, not knowing whether I was going to live or die. After first dismissing me and telling me I would have to wait, once I had made myself a real human being to her, my notes and results were found. 

I would advise anyone in a similar situation to learn the power of the consultant's secretary. Always be scrupulously polite with them but make yourself a clearly identifiable human being who the can relate to. It has helped me enormously.

By late April, ten months after that first severe bleed and three months after a gynaecological cancer was finally ruled out,  I was having to cancel clients due to the cough, vomiting and severe fatigue. I went back to the GP who had my bloods done again. Still anaemic in spite of the pills and with sky high inflammatory markers, he sent me for a chest x ray which came back perfectly clear .On the 12th May, my GP said he was referring me to an ENT consultant and to a General Medical Consultant. When I asked the waiting time, I was told 6-12 weeks minimum but he could try to make it faster.  By this time I was really frightened and feeling so ill, struggling through each day and haunted by the certainty that this was cancer, I knew that time was critical so I used a very limited medical insurance my husband has through his work to go privately and be seen faster. I had also lost trust in the hospital appointment system and record keeping. 

The ENT consultant saw me the following week and did a thorough examination including a nasal scope which only showed a small aphous ulcer at the entrance to my ear. He thought it might be due to acid reflux and as I was now scheduled for both a gastroscope and and an endoscope that weekend by the General Medical Specialist, he said to await the outcome of that. 

It is such a surreal experience to have both endoscope and gastroscope as part of the same investigative procedure. I had heard some horror stories about both but by then they could have done anything they wanted as long as they found out what was wrong with me. Strangely the endoscope was the least painful part of that day and showed normal erosion in pockets consistent with my age; two small polyps were removed and the results of the biopsies proved negative. 

The gastroscope took every ounce of my self control not to leap off the operation table and run for my life. I have always had a sensitive gag reflex but managed to keep it under control. I would rather have an endoscope any day than face another seemingly massive camera bruise its way down my throat, I got a bit of a shock when it showed very severe gastric erosion due to symptom free gastric reflux. The consultant told me they were very lucky to catch it because it was at a stage where it could have bled dangerously at any time. My dentist had persistently asked me about my diet because he said my teeth were eroding as though they were having a regular acid bath. Having no symptoms, I couldn't help him.

My consultant ordered medication for the gastric erosion but he still felt that there was something much more serious wrong and took a whole raft of blood tests, most of which my GP had never heard of. He was looking for signs of autoimmune disease which would have explained a lot of symptoms, including random severe muscle and soft tissue pain of long standing. Every marker came back as negative apart from one. They had picked up the presence of Bence Jones Lambda light bodies in a low concentration which can be indicative of multiple myeloma or develop into it over the years. Now that was absolutely terrifying. I had gone from suspicion of uterine, cervical or ovarian cancer to throat cancer to bowel cancer and now I was facing the prospect of multiple myeloma. In an odd way it was quite exciting because I felt we were closing in on a diagnosis.

I was referred to a Haematologist  in the mainstream NHS and in spite of all the months of accumulated waiting and deterioration of my health it was seven weeks before I was seen. In the meantime my cough had become so bad, I was having asthma symptoms where I was finding it very difficult to breathe. I begged my doctor for help as I just couldn't go on anymore; he gave me a steroid spray to use twice a day and this helped a little. It did not take the cough away but it did give me back my ability to breathe. 

Tomorrow is another day and I will share the last stage of the long and frightening journey to diagnosis.