I’m starting to write this whilst my mind and memory is still a bit blurred. I’ve been trying to piece together what has happened to me during my stay in hospital, I was discouraged from finding out too much after the trauma, but eventually got pieces of info to give me some sort of timeline.
The good news is that the liver op went well. The right side of my liver was removed completely, along with my gall bladder. On the left side, there had been some debate as to whether any of the lesions remained after chemotherapy, and with scans during the op and close examination, nothing could be found, and so the decision was made not to try and resect anything on that side. That’s good news I think. The histopathology results came in on the day I was discharged, but only had the opportunity of discussing them with a junior doctor, and to be honest, I knew more about what was going on than she did. I’ll be seeing the liver surgeon in about 4 weeks time, when my liver should have regenerated enough for some sensible conclusions to be made, so I’ll bide my time until then. So far all blood tests and liver function tests have been good, or ‘as expected’ so I’m not unduly concerned at this point. I’m expecting more chemo when I’m referred back to The Christie. Just to clean up anything that may have been left behind.
As I have already indicated, liver surgery went well. A 5 hour op, and the epidural worked so I was relatively pain free. I did however have my first experience of referred pain, My right shoulder hurt like hell for the first 24 hours post op, which is a strange sensation considering the operation was nowhere near there. After 48 hours on the High Dependency unit post op, I was well enough to be transferred back to the ward, and at that point doctors were talking about getting me home by the middle of the following week. Everything was looking good. By Saturday I was having my first visitors, but gradually over the next 24 hours things began to go wrong somewhere. I was running a slight temperature, my blood oxygen levels were dropping and I was experiencing some breathing difficulties. I didn’t think this was anything other than a minor hiccup, but the nursing staff on the ward were becoming increasingly concerned by Sunday lunchtime. I was back on a full oxygen mask, and even removing this for a few seconds whilst I took a mouthful of food was becoming increasingly difficult. Unbeknown to me calls had already been made to the intensive care team for advice as to what direction my treatment should be heading, and eventually an ICU consultant came to the ward to assess me, and arranged for my transfer back to the high dependency unit. At this stage all I was aware of was that I was to receive a blood transfusion on the basis that loss of blood during surgery was causing the lack of oxygen in my blood, and on the way to HDU I was to undergo a chest x-ray, the first of at least a dozen over the coming days.
I was still only considering this move to be a minor setback. I was more concerned that Lew was on his way having travelled up from the south coast that morning. I didn’t want him to be alarmed at the move, and wanted to ensure he knew where I was. I needn’t have worried, Lew was quite able to suss out what was going on, it was me who was confused. Over the next 24 hours I was subjected to a series of different breathing therapies with varying degrees of discomfort. At various times during the night I was castigated by by nursing staff for ripping off the various masks that were becoming tighter on my face. Even now the skin behind my ears is torn due to the tightness and pressure caused by the equipment. Respirators, inhalator’s, ventilators and nebulisers. My veins were collapsing with laughable ease as soon as a needle was anywhere near approaching them, although eventually the first of the blood transfusions was in place and flowing. Despite this my blood pressure was now falling to a dangerous level, not that I was concerned in any way. After 24 hours of trying to force oxygen into my lungs some bright spark remembered the chest x-ray I’d had the day before. Why nobody had looked at it is beyond me, and the intensive care consultant who had returned to work after a couple of days off with sickness. I clearly remember him venting his anger at junior doctors and registrars at this oversight. The chest x-ray clearly showed not just a collapsed lung, but a punctured lung. Whether the therapies that had been tried so far had caused the hole in my lung, or made a small tear worse was debatable, but it was clearly the wrong line of treatment. It was at this point that scary moment number one occurred, thankfully whilst I was surrounded by doctors and consultants. The smallest sip of water went down the wrong way, and within seconds I was gasping for air, reaching out for Lew’s hand to grasp as I was drowning in a sip of water. For the first time ever I had thoughts that this was the end as I battled for even the slightest breath. Everything was happening in slow motion before me, I had lost all sense of hearing or understanding as to what was going on. The curtains were hurriedly drawn around my bed as doctors gowned up and began tugging and pulling my arms in all directions as the first incision was made just under my armpit and a tube forced into my lung to drain it and try to reinflate it. It was very painful, hence the need for me to be physically held down whilst the procedure took place, but the relief was immediate as my lung began to inflate and I was able to breathe again. Once again I reached for Lew’s hand as he was allowed back in, I’m sure he must have sensed my relief as I held him, tears running down my face.
Everyone seemed to leave satisfied that evening, a job well done. I was still hooked up to every kind of monitor an drip you could imagine, still full facial oxygen, but at least I was feeling better, apart from feeling quite warm. I asked for a bedside fan to cool me down, and my temperature was checked…..37.5. I mentioned to the nurse that 37.5 was high for me, my normal body temperature is usually between 35.5 and 36 degrees. It was sometime later that I noticed I was covered in sweat, and the bed clothing was undoubtedly wet on one side. A further check revealed that the chest drain had fallen out ! Once again medical staff were gathering around my bed, discussing the options available to them. It was obvious that another drain had to be put in. I protested that I didn’t want this done without a general anaesthetic, I had already experienced the procedure once that evening and didn’t want to have to go through it again. I was barely coherent and was drifting in and out of consciousness. As I continued to protest doctors were again gowning up and putting on their masks in front of me, I was viewing everything as if through a fish eye lens, it was surreal and once again very scary. The doctors voices were becoming louder and more insistent as they informed me there wasn’t time for any anaesthetic, and made clear the consequences of delaying things any further. Lew was again ushered out as the procedure began again, thankfully though with a heavy sedative being pumped into a cannula on my wrist. I don’t remember anything else until I was coming round from the sedative, with doctors reassuring me that everything was OK, and the chest drain had been inserted successfully, this time held firmly in place with four sutures. My relief was immense and overwhelming. I really didn’t expect to be coming round from this one. The powerful sedative and drugs they had given me had a profound effect on me. I was no longer thinking straight or making much sense when Lew was eventually allowed back in to see me. I had an overwhelming sense of guilt that he had been subjected to sharing the trauma of that evening, god knows what had been going through his mind as he waited the half hour or so before he was allowed back in. His strength was enormous, far greater than I could have mustered in the same position. He didn’t want to leave that night, but I know he had been reassured that my condition was now stable. I began to get angry with him over trivial things that were going through my drug scrambled mind, but he remained strong and calm throughout. He must have got bored with the number of times I told him I loved him, in between my rants and irrational outbursts. Lew eventually went home (my home) and I drifted in and out of sleep throughout the night, still trying to comprehend what had happened.
Chest x-rays were now becoming a regular occurrence, I was too ill to be moved and so the poor radiologists had to push those huge portable machines to my bedside for the images to be taken. Some days I was having 4 a day, and the effort it took for me to sit forward for the plate to go behind me was tremendous. Apart from that they were freezing. I had no idea what drugs were being pumped into me, but by now I was struggling to understand or respond to the simplest of requests. The decision was made to move me from the High Dependency Unit to Intensive Care. Lew had arrived by now and had requested to speak to the ICU consultant on arrival at the unit. He did his best to explain, and Lew seemed satisfied at the information we had been given. I on the other hand was now in a completely different world. I wondered why they had transferred me to a unit that appeared to be in a cellar, the walls of which were crawling with red ants, so much so that the walls and ceilings were moving. Even the consultant was covered in insects as he stood in front of us explaining the situation. I had developed a rude and distrusting attitude towards any doctor who came near me, particularly if they were armed with needles. I knew that what I was seeing and what was happening around me was entirely down to drugs that were being pumped into my body, I was laughing about it as I was pointing out the areas of infestation to Lew, even though I knew it wasn’t real. I felt a bit of a fraud being in intensive care as I looked at the other 5 patients in there, all so desperately ill. I was fine, of course, nothing wrong with me, I couldn’t understand why I was there. The only thing that indicated a change between night and day was the change in staff. It didn’t really matter whether the lights were on or off, I was still living my own experience in my head, some remarkable experiences I can tell you. I was mumbling and having conversations with non existent people, but it was all fun.
Thursday arrived and it was time for Lew to be going home. He didn’t want to go, but at least now the imminent danger seemed to be over. There were becoming fewer and fewer bubbles in that bottle under my bed. The tear in my lung was healing, and at last re-inflating. Sister number one and her partner Clive also came to see me. Not sure how I was looking, but I think I was beginning to feel better. This was in no small part due to the wonderful care from the staff on ICU. This is surely the most dedicated part of nursing that the public, thankfully, rarely get to see. When you are so seriously ill your are totally dependent on others to care for your every need, and to notice even the slightest change in condition. I can never thank them enough for the care and compassion they showed me during my stay with them. I wasn’t aware of what was going on outside the four walls of ICU, let lone the big world outside. At about midnight, there seemed be a lot of activity going on around me. It seemed to be a strange time of the day for the cleaning team to be working. All soon became clear as the night sister informed me thee days in ICU I was to be moved back to the High Dependency Unit. The Noro virus (winter vomiting virus) had struck the hospital and wards were being closed. One of the visitors of another patient in ICU had been ill, and as a precaution patients well enough were being moved as the deep cleansing team moved in. Moving me was quite a complex operation with all the tubes, drains, monitors and oxygen, disconnecting me one end and then the reverse process at the other. It was the early hours before I was finally settled in HDU, and when the day staff arrived in the morning I was overwhelmed by the number of staff, from doctors and nurses right down to ward domestics who commented on how well I was looking compared to when I left their care a few days earlier. The next few days were about getting stronger and better. Progress was marked each day with the removal of tubes and drains as my condition improved. The final hurdle was the removal of the 42 metal staples that held together the wound from my liver op. Oh yeah, remember the liver op ? Almost became a side issue there, with everything else going on. On that front everything was going well. My diminished liver was functioning well, but still a long way to go before the two thirds that had been removed had fully regenerated.
I was soon back on the main ward, a sign of how much I was improving. Once again I was met with comments on how well I was looking compared to when I left them. My first glance in a mirror for over 2 weeks made me think of how bad I must have looked compared to the pale gaunt image I was seeing for myself. I was still on oxygen, but the levels were being reduced on a daily basis, and by the time Christmas day arrived it was being delivered via nasal tubes compared to a full facial mask. It didn’t make the Christmas dinner taste any better, but at least it was easier to eat. There were no visitors, the ward was still closed due to the noro virus. This in part led to my determination to get home as soon as I could, I seemed to be more at risk of being affected by the virus the longer I was in hospital, and so on Boxing day I had a long chat with the doctors to start the process of getting me home. There was a long list of tests they wanted to perform before they would allow me home, but these were set in motion and by the time the results arrived by the following day, everything looked positive and I was ready to go home – at last !
Well that’s it…….I’m home. It was a very emotional return, great relief and to some extent shock at the realisation of what I had been through in the previous 17 days. I was totally exhausted both physically and emotionally. The first thing I did on arrival home was to phone my kids. Fantastic to hear their voices, especially my darling daughter Alana. I still felt very guilty that Lewis had to witness some terrifying incidents whilst I was in hospital, but relived that Alana had been spared the anguish. I had spoken to her whilst I was in hospital, but had little memory of this, and so it was such a relief to be speaking to her again. There were times when I really wasn’t sure whether I would make it. There were quite a few patients I had been with who didn’t. The incidents of porters drawing the curtains around your bed as they wheeled the aluminium mortuary trolley’s in and out were far too many. Seeing and hearing the grieving relatives was disturbing and haunting. I knew how thankful I should be to be going home. The district nurse has been twice since I have been home, the last of my dressings covering the various puncture holes across my abdomen and chest have been removed. I’m still very breathless, but I’m getting better and stronger by the day. I’m not able to control when I do and do not sleep yet, so there have been some very long nights. The pile of opiates I’m still taking mean I am out of pain, and the periods I am spending out of bed each day is increasing.
It only remains for me to thank all of those who have sent their best wishes and prayers for me over the last few weeks. I’ve not been able to respond to all of them, but each of them I have read or heard have meant so much to me. Thank you. I’m now beginning the long journey to get strong and fit again in time for Glastonbury festival in June. At last I can say it’s ‘this year’, I can set my sights on it, a target to aim for. I know how lucky I am to have tickets, and to still be here to look forward to it. I still have one major hurdle to cross, surgery on my lungs to remove the last remaining cancer in my body. That’s still a while off, two major operations in 12 months is quite enough for the time being.
Happy New year to you all, I wish you good health for 2013, everything else is immaterial.