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Saturday 11 October 2014

Day 9

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

I do not want to do this. 

I do not want to do this,
Pull another poem out
From a pill filled addled brain.

Is the cache not emptied yet?

I do not want to do this,
Messy, mixed up memories
At the bottom of my mind.

Is the bin not emptied yet?

I do not want to do this,
How can I be so calm,
As the nightmare unfolds?.

Where did my horror go ?

I do not want to do this
And yet I am compelled
Dry eyed to tell this tale.

Who will this telling help?  

I do not want to do this,
But others need to hear
So they may understand.

How to walk with death
Make peace with the Reaper.
Come to call him friend.
Learning vital lessons
From all the fear and pain,
To reach within the mind
And find eternity.

No more questions now.



Now for the continuation of my story. 
The tale grows in the telling.

Over a week passed from being given the news about my diagnosis and there was no contact form the hospital, no contact from my GP, no contact from the Urology Department and no appointment for a detailed scan. So there I was with a diagnosis after 15 months of testing and waiting and all the time growing weaker and weaker. Now I was in the system and waiting once again. I had often expressed the opinion to my husband that the NHS were holding out for most of us to die on waiting lists. My rational mind told me this was untrue but that is not what my emotional brain screamed at me every time the mail arrived and there was nothing from them.

I longed to talk with someone experienced in the cancer so they could help me understand, to make sense or just scream at. No one thought to mention any support groups, Marie Curie, Maggie's or Macmillan. Just you have cancer; it is serious and we, the urologists, will see you once we have the results of the detailed kidney scan but let us keep you cowering in the dark of imaginings without even telling you when your appointments will be. 

As I no longer trusted the medical establishment, I made contact with the only people who at that time seemed to really care, the consultant's secretary. She moved heaven and earth to push the scan forward but ended up getting her head bitten off by the appointment staff. She did manage to get the consultant to phone me but all he could do was reiterate how serious it all was and that they would be able to decide just how serious and what to do when the scan came through. It took a further three weeks before I had that scan. Endless months of waiting and they did not even have the compassion to fast track the scans. 

Another week passe and a different consultant phoned me to go through the scan with me.It was 9cm filling the lower half of the kidney, extending extensively into the left renal vein distending it at least as far as the IVC, Inferior Vena Cava. There were  multiple para aortic nodes of significant size. Worst of all it said there was a suggestion of tumour extension up the IVC to the suprahepatic IVC. If this was the case I would require coronary by pass surgery at the same time as a radical nephrectomy and the resection of the hepatic veins, a very high risk surgery. They did not have the facilities required at my local hospital so they had arranged an immediate referral to another hospital, my fifth hospital and I so hoped my last. The appointment was for the following day which worried me even more. 

Jim and I trailed up to the new hospital the next morning where I was seen by the most wonderful surgeon who had survived an accident which now required that he operate from a wheel chair. I knew he had a great reputation both for his skills and for his compassion. He showed us the scans and explained what he saw there which the other hospital had missed. What this showed was that the tumour extension ran all the way from the kidney, up through the inferior and superior vena cava and on into the lower right chamber of my heart, the atrium. He very gently explained that if the surgery was possible, it was a very rare condition with less than one per cent of one per cent of the kideny cancer population presenting with it. There were only two surgeons in Scotland who had expeience in the operation and a team of surgeons who were prepared to carry it out. He had already contacted one of them and my notes were being transferred to Mr. Michael Aitchison at Gartnavel Hospital in Glasgow.who had agreed to help. I was also required to have an MRI to plot the actual extent of the tumour in the venous system. He would arrange this urgently with Hairmyres, the local hospital from which I had been referred. I had my doubts about what urgent meant to the appointment office in Hairmyres after previous experiences but this time I knew what to do about it. 

As Jim and I walked along the endless corridor after the appointment, all that was playing over and over again in my head, was "Dead Woman Walking". I had never heard of anyone having cancer in their heart and I really felt that I was lost. Jim was very quiet but held my hand and supported me to the car as by this time I was so weak that walking had become a challenge. Once in the car, I cried, more concerned about how we would tell my mother and our son the very bad news.Up until then, we had allowed the hope that a simple nephrectomy, removal of the kidney, would be the possible end of the nightmare at least for a while if I got lucky and it did not come back. Now we were looking at the distinct possibility that nothing at all could be done. 

My mother was distraught, this usually calm woman sobbing and holding me. She was so terrified that they would not be able to help me and she would have to face watching me die, Mum did not do death very well. I suspect that having lost her father unexpectedly at the age of 9, she had been marked by it. She had nursed my grandmother and her handicapped sister through their dying and had taken a very long time to step back into the world again. She was an amazing support to me but at that moment her world dissolved into fear.

Our son cried his tears in the privacy of his own room and with his friends but was relentlessly positive with me. He believed in how tough I was and that I could beat this. He had a hell of a lot more faith at that moment than his mother, Mrs, Positivity, herself. I was clean out by then.

More of the story tomorrow when we might even get to the Big Op.


A day in the life

The last two days have plagued me with middle of the night dashes to the toilet, stomach pain and nausea. My tongue had also been painful as another gift of a side effect is ulceration of the mouth and some loss of taste. This can make eating somewhat of a challenge. Yesterday was such a day. Today has been better and we shared a small lasagne tonight which was delicious. I even managed a few sips of wine.

I miss good food and I miss the fun we had exploring new restaurants, the three of us relishing new tastes and one another's company, Out son is now in Taiwan teaching so there is always a sense of someone missing but meals in restaurants are high days and holidays, depending on how I feel each day. I usually ask for a starter  only or a very small portion of the meals. I hate the waste when they do not chose to accommodate a small appetite even when I offer to pay the full price/ I also miss savouring a really excellent wine but in the end it is a choice between temporarily enjoying these things or dying which also has a tendency to end up in not being able to eat.

So I go with the changes in my life and accept the reality of my situation, I find that liberating. Life has changed but that does not mean I have to stop enjoying it. Today it was directing my non gardening husband in replanting my container roses in the garden and planting new clematis to climb up the inverted triangular frames on the wall at the entrance to our home I can look forward to them flowering in early summer. As I said before, I plant in hope, hope of seeing them in bloom. 


Once again some words from experience

Look for the people on the outer reaches of the survival statistics. Tell yourself that you have just the same chance of surviving as long as they have and did.

Accept the possibility that you might be dying a lot sooner than anticipated and discipline your mind to attend to whatever arrangements you need to so you do not leave your loved ones in a mess.

Know that you cannot do everything you could before but there are new things to explore and you can do without the life you once had. The important thing is to live fully the life you have.

It is natural to mourn the old life but if you let yourself drown in sorrow then you are wasting every day you could be living fully.

Seek help if you need it and do not be ashamed if you do. I am a psychotherapist and I have training and tricks that helped me every day to come through this I promise I will share them with you but for now accept that we are all mortal but do not give up on what life you have in the overwhelm of fear. Once you are dead, you are dead. Do not live as though you already were.

You will amaze yourself with the reserves of courage and endurance you will find from deep within you.

Avoid toxic people, those energy vampires whose love of drama will exhaust you. They are not worthy of your precious time. 


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