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.