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Tuesday, 2 December 2014

Day 12 - The talk of the steamie.

On the 21st November, I had the big op, but only just made it to the operating theatre. I had been assessed as being fit for the operation by the pre-op team. The whole hospital was talking about the surgery because it was so rare and complex. The lovely lady who gave me my echo cardiogram to check the exact position of the tumour waving about in my heart, had told me that everyone was trying to get on the team in some capacity or find some room to observe. In her words, I was the talk of the steamie. For those who are not native Scots, I will translate that as being the centre of discussion among those who gather at the local communal clothes washing establishment. Three eminent surgeons had co-ordinated their diaries and blocked off a whole day devoted to one wee fat woman, me. 

All I wanted was to be sedated, put to sleep and have this cancerous burden removed from my body. I had said my goodbyes to my family, knowing so acutely that it might be the last time as this was a high risk operation. I wasn't even afraid anymore, just so tired of living a life that just was not living anymore. I was ready to take my only chance at real life even if I died in the process.

I checked into the hospital with my husband the day before the scheduled op and various forms were filled, more blood tests and examinations, All seemed well and then it happened 

The doctor who would later look after me on the ward, arrived looking concerned. My haemoglobin levels had dropped to 7.5 from 8.5 the previous week, which he had considered a serious risk factor at the time but now with the precipitous drop, he told me that it would be his recommendation to the surgeons to postpone the operation, keep me in hospital and give me a series of blood transfusions. My whole world imploded; whatever fragile strength I had retained to hold me together through this 18 month nightmare, disintegrated. 

He left to "give my recommendation to the surgical team", who would then discuss it and decide what to do. When he left the room, my husband and mother held me as I wept with absolute despair. From the moment I became aware that all was not well with my body, through all the horrible symptoms that drove me nearly insane, through all the terrible waiting and the bungled appointments, through the agony of not knowing what was destroying me from within, I had never once said or even felt "why me". I had simply accepted this as the random cruelty of life.At that moment I was at the lowest I have ever been and all I could say was "God must hate me". Ten agonizing minutes later the doctor returned and told me that the surgeons were unanimous that the operation had to go ahead and that I would be given four units of blood delivered at half the rate normally used to minimize damage. At that point they could have amputated an arm and if that had got me into surgery I would have gladly given it.We hugged one another and then I was taken up to my lovely room on the cardiac ward. It had been decided that after I came out of Intensive Care, the greater risk was of heart related problems so I would be nursed on this ward, 

I was settled in bed and the long slow drip of bloods started. Jim and Mum were bundled off home and Jim would arrive back in the evening along with Jan, our son, who would make his way out to the hospital from the city centre after his university classes finished for the day. He wanted to keep distracted for as long as possible but confessed to me later that while I was in the theatre, it really hit him hard that he might easily lose me. 

The last of the blood was delivered at 4am and I was wheeled down to the theatre at 9am. I doubt if they had ever had a patient so relieved and happy to be put under! I chatted to the anaesthetist in the theatre anti room where I would be the only patient that day. I had entered a space of deep stillness where there was neither fear nor hope, just a deep acceptance and surrender of the outcome It seemed so uncannily normal.

As they wheeled me into theatre the pre-op injection hit and I became very drowsy. I have vague memories of the team saying hello and then I was out for the count, sinking into a deep velvet blackness where all awareness disappeared. 

 Eight hours later I was in intensive care and was kept deeply unconscious until late the following afternoon when I slowly returned to the land of the living. My first words to the nurse were "Oh good, I'm still alive". She was able to tell me that the surgeons had been very happy with the outcome of the operation and when they came to visit they were able to tell me that they believed they had got all the tumour and that its extended growth into my vena cava and lower heart chamber had not been attached to the walls of vein or heart. Mr McArthur, the heart surgeon, had simply been able to ease it out without any difficulty. It had taken three hours to bring me back from the bypass but nothing untoward had occurred and they were extremely pleased with the way it had all gone. After that I was back in the peace of oblivion and came in and out of it over the next few days. 

I was out of ICU in 48 hours and in HDU ( High Dependency Unit} barely long enough to have a few hours sleep. When my surgeons came looking for me in ICU (Intensive Care Unit) they were amazed that I had recovered sufficiently to be back on the ward. They had even hired in a special mattress to give me support because I had 55 staples in the abdominal wound as well as the chest wound to cope with. When I heard how expensive it was, I felt truly cared for. It responded to my every movement and was like being on a cushion of clouds. I was so grateful and for the fact that all patients in the Golden Jubilee have their own room, so no disturbance from snorers, not that I got much sleep with obs being taken every 30 minutes as my oxygen sats kept dropping during the night and I ended up with an oxygen mask which kept slipping down. My bloods were also still poor so they added another two units of blood on the fourth day after the op. Pain was well controlled and I would have assessed it more as occasionally severe, mostly uncomfortable. 

On the third day on the word I was deemed strong enough for a visit from the physio. She told me that they had held a special team meeting to discuss how to handle my condition. They had never had a patient with such a large abdominal wound combined with a cracked sternum for the open heart surgery. They had devised a way of my protecting myself if I sneezed. I was to cross over one arm to the opposite shoulder to protect my chest while holding the other arm firmly across my upper abdomen to protect the large wound. Having settled that she helped me to sit up and showed me how to swing my legs out of bed to lever myself onto the side of the bed in a seating position, With her help I was up and walking about a little further each day, albeit at a very unsteady snail's pace. As I had stairs to go down to reach my home, they had me going up and down the stairs until I could manage them without becoming completely exhausted. 

Recovery was slow but steady although my bloods were roller coaster for a while. I recently found out that someone who is now a good friend was in charge of analysing the bloods while I was in hospital and when I mentioned the operation it finally clicked into place. What an amazingly small world we live in. Apparently I gave them a lot of work. 

I had great difficulty keeping anything down but that had been the pattern for months before the operation so I was used to it. What I was not used to was trying to hold the wound firmly to protect it from the painful effects of the stomach contractions. I had a lovely young man who brought round the food. He tried to gently coax me to have another mouthful or two, always asked if there was anything else he could get from the kitchen for me and moved heaven and earth just to try and find me something I could keep down. I will always be grateful to him. 

I was weighed every few days and my weight continued to drop alarmingly but as I had been seriously overweight in the first place, at least I could afford to lose it. When I look at the total volume of weight I have lost due to cancer, I know that if I had not been overweight, I would no longer be here. I also openly admit that obesity is linked to the development of cancer so I might never have been in this position if I had been able to sustain a normal weight since childhood. I promise to write more on this later.

On day 5, the same doctor who had told me I was unfit for surgery arrived and said I was now well enough to go home. The nurse who accompanied him looked absolutely shocked and I was very worried as I really did not feel well enough to go anywhere. She waited until he was gone and then came back to me and said that there was no way that I was fit enough to go home and she was going to speak to the senior nurse. Very quickly after that a very chastened doctor arrived back to tell me that I was to stay until my surgical team assessed me as fit to go and they thought I was still a week away. I suspect that he meant well but was used to handling only cardiac cases where the bed turn around usually is five days and that it is in the best interest of a heart patient to get them our and moving around normally as soon as possible. My surgery was fairly unique, one per cent of one percent of all kidney cancer patients, so it was all virgin territory for all of them. I was very relieved as I was now hitting the post operative blues and was certain I would not cope at home.

That extra time and a whole lot of loving care was what I needed. I was given the all clear to go home on day 12 and the staples were removed a few days later when we came back to the hospital Unfortunately the abdominal would had developed an infection so I was on antibiotics for a week and the district nurses came in every day to change dressings and monitor progress. The infection disappeared very quickly but the wound had opened in two places so the visits were ongoing. At first they thought it would be months before it healed completely but it is now almost closed up and visits are now reduced to every three days as of yesterday. Pain killers were provided in sufficient quantity to sedate half of Scotland but I didn't need them after ten days other than an occasional paracetamol once or twice a week. I count myself as being incredibly lucky in possessing a very resilient body which slowly bounced back from the most challenging experience of my life. 

A month later I was seen by my urology surgeon and he explained that the operation had been successful in removing all visible signs of cancer. There had been no lymph node involvement and no spread to any other organ. It was however the worst classification of tumour, a Fuhrman Grade 4 with a very high rate of recurrence. I accepted I was never going to be free of this cancer because even if there was no reappearance, I would have to be scanned regularly for the rest of my life so that immediate action could be taken should the enemy rear its head again. A few days later I saw my heart surgeon who told me that apart from what he described as a few sticky bits he was amazed at how easily the long tumour extension could be literally reeled out of my heart and vena cava. He explained exactly what he had done and that there was absolutely no reason to expect to every see me again. We shared some laughter and I shook his hand before I left  to get on with the rest of my life. 

Tuesday, 14 October 2014

Day 11 - I want to live or die trying.

Friday morning saw Jim and I sitting quietly in the waiting room of the Outpatient Clinic of the Gartnavel Renal Unit. The only others there were another couple, perhaps a similar age to us, but a mirror image, in the pale, anxious, tortured faces. They too sat silently holding hands, 

Mr. Aitchison had clearly put aside time to see those for whom there were difficult decisions to be made away from the time pressures of the routine clinics. This is a hallmark of the man's compassion. 

It seemed an eternity but it could only have been a few minutes until he came out and shephered us into his office. We sat down and he described the results of the scans, showing us the slides that revealed the full extent of the cancer. He explained the operation that he proposed describing exactly the risks but reassuring us that if he did not think I had a good chance of surviving, he would not be operating.

We had been so afraid that the answer would be that I was inoperable and we had left my poor mother at home in tears, dreading hearing those awful words and seeing her daughter die before her. She had tried to hid the fear but it was too overwhelming. I just wanted to know one way or another. I was just so weary of it all but I still wanted to fight if there was the slightest chance, I think we had to ask him if he would definitely be going ahead with the operation and he smiled as he confirmed that was exactly what he and his team had decided. He had discussed my condition at the Multi Disciplinary Team  meeting which included a heart surgeon, vascular surgeon and an anaesthetist who was very experienced in by pass which I would have to be on for a long period as the tumour was reeled out of my heart. 

We floated out of that room on a cloud of relief, not in the least troubled by the dangers of the operation, just rapturous that something might be done, I had a chance. 

My mother burst into tears when we told her. I think of the three of us she was the most deeply fearful, Our son confessed that he had also been afraid that the operation would not be possible but he knew I would get through because I was both tough and determined. I know only too well that no matter how tough and determined you are, there are some conditions that you simply cannot apply them to. They will not stop your dying but those characteristics will help you to live until that last breath without wasting what time you do have, 

Within a week I had a date and a venue, the beautiful, state of the art Golden Jubilee Hospital, chosen because it was the only place that had the surgical and post operative facilities I would need. I would have my pre-op tests a week before the operation and would be admitted the afternoon before. 

I passed the pre-op with flying colours much to my surprise. However, it would appear that my heart was in very good condition, such good condition that several cardiac nurses commented on how surprising and strange for them to see someone whose heart was healthy. I left feeling very positive. 

I did a lot of thinking in that week, a great deal of bringing Jim and Jan up to speed, organising access to my bank account, ensuring they knew where to find important documents and other tasks which had always been in my hands. We already had our wills made and they required no review. We had also knew what the other wanted in terms of treatment if we were unable to speak for ourselves and each held the other's legal power of attorney, both medical and financial. 

We spent even more time together, the three of us and when Jan was at university we spent time with the wider family, My brother who lived in the Netherlands flew in to spend some time with me as did my older brother and his wife who came in from Portugal. We spoke of how much we loved one another as I did with all my family. It was very moving and the outpouring of the most wonderful support from people all around the world was uplifting and helped me immensely. Each visit left me with the thought that this might be the last time, It saddened me but I had moved into acceptance and just wanted to welcome their love and give them mine. I had done my best in life, made my mistakes, had my regrets, but I had done some good and that was all anyone could ask for, Whatever the outcome, I was prepared. 

I did give some serious thought to my conceptions about an afterlife. When you are confronted with imminent death there is a need to think it through. I concluded that there might be something beyond this life but if there was it would be a pleasant surprise but if there was not, then I would not be aware of anything so it really did not matter. I firmly believe that we should live our lives with the intent to be loving and compassionate to all because it is what is right and not a bargaining for a place in Heaven. I hold that man does not require a religion to live a good life but if that helps them then it is generally a good thing. However, when the dictates of religion lead to the surrender of the individual sense of love and compassion as it often has and still does, then I reject it as a work more worthy of the devil than of a loving god. 

So did I pray? Oh, yes, I prayed. I prayed to  power within and beyond, the energy that links every being to one another.  I did not bargain for my life, just pleaded for the opportunity for more time with my loved ones, time to see my parents through to the end of their lives, time to see my son graduate in a little over two years time. I so wanted that time to help him, to support him, to teach him a little more about the world and how to respond to the challenges and pain it often bring as well as celebrate the happy times of fulfillment. I told Jim that I wanted him to find another partner in time and that if he got stuck in a morass of grief for too long, I would be back to haunt him. I wanted him to know the comfort of loving oompanionship. It was not easy for him but he listened and it made me feel as though I had done what I could. 

A few days before the operation, Jim and I had a whole day together at the seaside in Ayrshire. We walked along the front at Ayr on a cold but sunny day. The air was so restoring and refreshing. I walked further than I had been able to do for a long time and we felt so calm and at peace. When I got back to the car, I was bleeding heavily, the price of pushing my frail body way too far, but I was happy, exhausted but happy. 

I was ready. Golden Jubilee here I come. 

Day 11 of the Poem a Day for October from three days behind

Poetry Prompts - Courageously Speaking for Children

“Take the blinders from your vision

take the padding from your ears

and confess you've heard me crying 

and admit you've seen my tears.” 

Terrorized children do not shed tears
They have gone so far beyond 
That simple expression of emotion
Into a place of profound emptiness
Where trust is buried deep within.

You will not hear them crying
They are afraid that you will hear
That you will ask the right questions
But will not accept their wrong answers
The story that  you do not want to hear. 

Your daddy, uncle, did what to you?
How could you tell such terrible lies?
Where did you hear those awful words,
Why are you such a curse in our home
Acting out, a problem child ,now this filth?

No, you will not tell, you will not speak, 
You are so wicked, no one will listen, 
And if you do tell what will they think 
It is all your fault, you asked for it. 
Dirty, filthy, little whore, all your fault, 

So afraid not to be loved, to be rejected
By those who should love you most, 
Your abuser has stolen your childhood
Become the haunting voice in your head. 
Brainwashed into silence and submission. 

Open your eyes and ask your questions
But ask them of yourself and  others. 
Why is your child showing such changes?
Why the absence of happy laughter?
Why the bad reports from school.?

Open your ears and listen to the silence
Open your heart and your love will find 
The way to the truth, the story waiting
To burst the walls of grief wide open
To once again be safe and unafraid. 

Maya Angelou had the right of it
But you must see and hear
Beyond the silence. 

“Take the blinders from your vision

take the padding from your ears

and confess you've heard me crying 

and admit you've seen my tears.” 

Sunday, 12 October 2014

DAY 10 - Playing Cat and Mouse with my Sanity.

The theme for today's poetry prompt is mental health as we join in the international Mental Health Day designed to give recognition to those who still face a world of misunderstanding and discrimination for what is simply another physical disease which manifests in behavioural symptoms. I have walked this path with someone dear to me. I have guided clients through their nightmares and given them techniques to self manage and live happier lives. I suffered a deep suicidal depression forty years ago and came out the other end of the darkest tunnel, never to return to it. Last year I suffered paranoid delusions for five days as a rare side effect of sepsis of the gall bladder. It gave me a deeper insight into what it feels like for your mind to be running uncontrolled scenarios. I know it from inside and out but for those who live inside it every day, I salute and love you for it takes immense courage to do so.

This poem is about a method I used with great success in psychotherapy with some of my clients, I also used it and continue to use it myself. It effectively reprograms trigger events in your life to delete and distort the long term harmful influence, It is effective for most phobias, panic attacks and PTSD. One of my own phobias was approaching junctions as I had been hit side ways on as I crossed it, I used the visualisation while in deep relaxation and when I had finished, the phobia had gone and when I tried to recover the memory, it was as thought it was very far away and not quite in reach. The memory of the shock and fear had gone. A well trained hypnotherapist will know the technique and I advise that you are guided through by a professional, not on your own.

In gratitude for the Rewind Technique

I walk the convoluted pathways of your mind 
The twists and turns, leading to blind alleys
Where horrors attack playing continuous loop.

We find our way tentatively to a distant view
Where safe from the malignancy of memories
We can watch the past from a safe place. 

We can observe, alter the speed, the direction.
All the distinctive markers of those moments
That trap you in a past long gone but still present.

With your courage and trust, you are ready now
To sit with me, relax and let go into deep silence
We can delete the malign influence of the past.

You have the courage to step forward now,
To allow me to guide you, to touch your mind
I have the editing software and you the desire. 

Those fear filled memories, distorted, haunting,
Played faster and faster, forward and rewind,
You hold the power, in your hands the control. 

We clear out the cache distorting your thinking,
Creating those fears that held back your living, 
Taking the gift of finding peace with your mind.

Cat and Mouse with my Sanity

The urology consultant had requested an urgent MRI with contrast to track the path of the snake like tumour stretching from kidney to heart. This was essential to the operation planning and to determining whether I was operable at all. Suddenly the Head of Radiology at Hairmyres Hospital, the original one when I was diagnosed. was insisting that I have an intrusive CT scan called a venogram which carries some nasty risks and yet more radiation as he felt it would give them what they wanted. It seems they would do anything but give me my MRI!!!  It had now been on emergency order for over two weeks. This was on the 14th October,2009.

The knowledge of how far the cancer had travelled weighed heavy on all of us. I think the very idea that there is cancer inside your heart just feels so beyond comprehension. I cried once or twice when I was able to be on my own, a bit tricky when everyone thinks you could drop down dead at any moment. The danger with a tumour in the vena cava is that it could rupture the blood vessel and I would bleed out very fast. That was a really hard one to have rattling around in your brain along with the refrain, "Dead woman walking!"

I researched the proposed procedure and found it to be rather a risky one for someone in the very poor condition I had slipped into as the cancer pumped out its toxins and made me so very weak. I tried to speak to a consultant but no one could explain what was better about this compared with the MRI. All I wanted now was to hear from Mr. Aitchison with an appointment to discuss whether he would be able to perform the very complex surgery I required,I also wanted the scanning done before I saw him and at this rate I was going to die before that happened. 

I decided that rather than sit back and let that be the result of their slowness, I would go down fighting and keep on reminding them of the urgency, going back to my previous suggestion that you must make make then really feel you as a suffering human being with whom they can identify. I spoke to everyone I could get hold of my phone and it was exhausting, Finally, it took my threatening to go to a named person who was senior in the hospital management, to get them moving, I told the appointments supervisor that if by the end of that day, the 22nd October,I did not have my appointment confirmed, I would do just that. I was icy calm and scrupulously polite but they knew I would do as I said. I was beginning to quietly go out of my mind with anger, mistrust and fear, fully justified by my experiences of lost case files, misplaced appointment letters and urgent requests being treated as non urgent. Fifteen minutes later I got a call saying come in on Monday morning to day surgery for your scan. I cannot tell you what it cost me emotionally to do this but my life was at stake and so far no one seemed to share my opinion that it was time to get moving. 

i still had a nagging feeling about the scanning procedure so I decided to directly contact the new proposed surgeon and find out if he had my notes. I spoke with his secretary and explained exactly the condition I was in and that Mr Aitchison was my last and only hope of living, I expressed my doubts about the procedure that had been proposed/ She was amazing, the kindest and the most efficient person that I had the joy to have regular contact with all through the two plus years I remained in his care. 

She remembered the letter coming in and knew that he was trying to get hold of the referring consultant to ask him some questions. She would be back in touch with me as soon as she had spoken to him as she was expecting him out of the operating theatre shortly. Just 30 minutes later. Mr. Aitchison called and was kindness itself. He told me that as far as he was concerned, the venogram was absolutely not the right procedure and he had cancelled it. He wanted an MRI of the abdomen to the heart and he would set it up right now. True to his word the Radiology department phoned back in 15 minutes to offer me a space on Monday afternoon at Gartnavel, a Glasgow hospital where he had set up a centre of excellence in the treatment of renal cell carcinoma. 

This was the fastest anyone had moved since this whole sorry story began 17 months previously. Within 24 hours of the MRI taking place, I was called to say that the results were in and Mr. Aitchison would see me to discuss the outcome on Friday at 9.30am.

Without being melodramatic about this, I felt as though the NHS had robbed me of my best chance at living a long and productive life. I was a  youthful 57, very happily married with a wonderful 19 year old son in second year of university. I had everything to live for and because of constant delays, I faced losing it all.

Tomorrow the results and action plan. 

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. 


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. 

Friday, 10 October 2014

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

Feeling Words:


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. 

Wednesday, 8 October 2014

Day 7 The ending of a journey and the Beginning of a new adventure

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


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. 


Tuesday, 7 October 2014

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.