I have never really been sick before, I reckon I've had less than a dozen sick days from work since 1995. I once ended up in hospital when I was seven after being hit by a car and can remember that I bent the needle of the tetanus injection I was being given due to my aversion for needles. Apart from that I spent a couple of days in hospital getting my tonsils out, again when I was very young. I can remember that I got a new watch for my troubles, it was blue and Swiss I think. I can also remember the nurse terrifying the life out of me whilst I was brushing my teeth and can visualise her shouting 'Wet the toothbrush first Allan'. So you can see hospitals aren't a natural thing for me, in fact if I'm honest, hospitals terrify the hell out of me and this feeling meant that the weekend exploits were that little bit more stressful.
On Friday night when I arrived at Ross Hall, the night shift dealt with me directly. I can say that the level of assistance and attention given by the staff at Ross Hall was fantastic however for a hospital 'newbie' like myself, it was a very confusing place. Names became a bit of a blur as each time attention was needed, it was generally another nurse that was involved, or an assistant, specialised nurse, business administrator, doctor etc etc. I do remember that Friday night was Dr Oshi's shift and she sounded my chest and came to the conclusion that I had fluid on my lungs. Thankfully we didn't go ahead with a lumber puncture as she had organised one of the radiology staff to come out who gave me a chest x-ray that showed nothing sinister. By this time Dr Stuart had been alerted to my condition who immediately attended the situation. At the same time Dr Oshi organised for a morphine injection to be administered and she carefully made the injection to my thigh which wasn't sore at all and my needle aversion thing never flinched, probably because I was in so much pain that I would do anything for the flow of morphine. Dr Stuart organised a CT scan in the morning and sat with Carol and I and explained what was going on. Essentially he suspected that he had inflated my oesophagus too much and that it had cracked the lining. When we asked how bad that was Dr Stuart said it depended on the extent of the the crack and that it could be fatal. Dr Stuart is an amazing guy with a great manner and said to me that when we first spoke he would not hold anything back and of course he was true to his word by looking at the 'Very Bad' situation of a large crack. I asked Carol to stay the night as again the hospital phobia was still there in the background however due to fire regulations Carol would need to sleep in another room. We decided that Carol would go home and she left around 2am. Thinking that I may not make it through the night, I gave Carol my funeral instructions. We had a cry and a laugh through it and she reassured me I would be fine and that she would be back first thing in the morning. By this time I had another cannula in, had donated another round of bloods just in case I needed a transfusion and had started on a round of intravenous infusions. At this point I was not allowed to eat or drink anything.
I was still in pain and twisted in bed unable to sleep. One of the nurses obviously knew that I was struggling and decided to stop by and have a chat in order to calm me down. I noted to her that the ward was very noisy and that I couldn't believe how may people were on duty that night. I also suggested that it had been a bit of a rollercoaster since I arrived and that it seemed everyone was working independently but as a team. 'This is just the start', she said, 'just wait until the circus wakes up tomorrow'. 'You need to remember that the circus is all around you pulling and pushing you in different ways but you are the ringmaster and you need to take control' she continued. I felt this an odd thing to say but I latterly realised exactly what she meant as the amount of drugs been thrown at me and offers of treatment and assistance changed on an hourly basis until you get to a point where you just want to stand up and shout 'STOP'. In truth you need to participate in the situations, get involved and have a say in what is going on. For years I have worked in a passive fashion. Not really controlling, listening from the side lines but happy that the professionals get on with it seeing as they are the experts and I'm not even a novice. This approach had to change and I was forced to start participating in the entire debate.
Saturday morning Carol arrived very early and I went for the CT scan. I was really expecting that after the CT I would be patted on the back and left to go home. I got wheeled to the Radiology unit and positioned on the CT machine. My cannula was my universal port at this point and the radiologist plugged me in, gave me a saline flush then added the trace fluid. I lay there for a few minutes waiting for Professor Moss who eventually arrived. I was lying down, head sticking out of top of machine when Professor Moss popped his head over me facing the opposite direction. His face close to mine but at a very weird angle, I could tell he had just finished a coffee. He immediately started to ask my story. I repeated that I had the endoscopy and it went wrong and that we think my gullet is cracked and this CT is looking for evidence. I think the radiology department must be closed at the weekend as everyone had turned up in their casual weekend clothes, there was nobody else there no receptionist. I remember seeing my paperwork for the CT and it had URGENT in red pen written over it. Anyway, Professor Moss ran the CT cycles and I was then wheeled back to my room.
I had just managed to get myself back into bed when yet another nurse that I hadn't seen before came and asked that I go back to Radiology. A porter came this time with a wheel chair and I was whizzed to Radiology again. This time Dr Stuart was there and he wanted me to take another scan using a barium trace. In the Radiology room, I sat on a stool and a scanning X-Ray was used to watch the fluid as it flowed down my gullet. We did this a few times and the smiles from behind the screen suggested that I wasn't in the terminal category. This was confirmed by Dr Stuart who after I managed to get settled back in my room came and spoke to Carol and I for a little while. He suggested that the best way for this to heal was to allow the body to fix itself and that the only issue was that I could possibly develop sepsis and to avoid that he suggested that I stay in hospital for a few days and be treated with antibiotics.
Once I had calmed down a bit, Carol went home to get supplies as we now knew I would be in for a few days. As I was now away from home and no longer able to take anything by mouth, I started to develop a deep intense pain as the lack of morphine was now starting to become an issue. I didn't realise it myself as I was receiving morphine injections but the issue was the volumes. At home I was regularly taking 80mg a day, sometimes more. The hospital were giving me 10mg twice a day - I didn't realise it, I just thought the professionals were on it. That afternoon was hell and when Carol eventually came back to the room I broke down in tears. Between the pain and the nausea I thought I was dying and felt alone and scared. The fact was I was actually suffering withdrawal symptoms from morphine and didn't fully appreciate what was going on.
If you have ever had an intravenous infusion before you may know the pump things that are commonly used to administer the flow at the correct speed and also 'BEEP' when something need attention. I've come to hate these machines and being attached to one for four days is another vision of hell for me now. I had over 50 different bags of stuff over my stay. It generally went something like - Bag of plasma fluids, antibiotic 1, flush, antibiotic 2, flush, Omeprazole, flush, Paracetamol, flush, plasma fluids etc etc. It went on for ever, each time a different nurse would come in and attend to the beep. And the machine would BEEP for anything, I mean anything. The machine would beep and continue at a high pitch which irritated so much that I would be forced to press my attention button which would eventually cause yet another unknown nurse or assistance to come in and silence the machine saying 'I'll let your nurse know'. Usually 10 minutes later with no attendance you would find the machine would beep again, I press the button etc etc Eventually I worked out how to mute the machine and I got into the habit of simply pressing mute and leaving it until the nurse attending remembered to look in on me. This technique got me into trouble a couple of times but proved invaluable when looking for some peace and quiet and anyway, I was the Ring Master.
The pain was always there and on one occasion when my IV machine had decided to beep itself into next week I was attended to by a nurse who had a 'University of West of Scotland' smock on. She was obviously a trainee of some sort and had decided to look at my IV set up. As I had yet to receive any real pain killers I was starting to curl up on the bed and moan loudly. This obviously had an unsettling affect on the student who by this point has disconnected my flow of Paracetamol which was the only pain relief I was on at that point and the thought of this being restricted gave me more apprehension. After about 10 minutes, the student called for assistance and at that point I think the collective realised how bad my pain situation was and there was then immediate attention put on my regular infusion of Paracetamol as well as a call to look at options available for other pain treatment.
Saturday night was another night of twisted pain, no sleep and hospital angst. One of the nurses who's husband was in his 30s and also had terminal cancer spoke with us. It was interesting to listen to her perspectives and how traditional treatment was not what she and her husband had decided to adopt. Eventually the Paracetamol gave me enough pain relief to get a few hours on Sunday morning although the lack of water meant my mouth was so dry and I fell asleep dreaming of things like Cremola Foam, Tizer, Red Cola .... oh man I was just so thirsty. The amazing thing was that I was taking on at least two litres of fluids a day through the IV so my body was fine even though there was nil by mouth.
On Sunday we watched the Rugby. The nurses and Doctors had looked at my pain needs and had decided to offer me Ora Morph as well as Paracetamol which I accepted happily. I knew at this point I was suffering morphine withdrawal and I would accept it in any form. The problem was the dosages were too low and I continued to be sick even when there was no pain due to the Paracetamol. Late on Sunday I think I accepted a morphine shot, paracetamol and some oramorph. This must have been the magic combination as I slept for the first time on Sunday straight through. I awoke on Monday morning feeling refreshed and happy that I would be going home that day. Essentially I would give some blood and as long as the count wasn't high I'd be getting out. Dr Stuart came in later in the day and said my bloods were fine but he would like to see me stay for another 48 hours. I was horrified at the thought and eventually came to a compromise with him that I would stay on Monday and look to be released on Tuesday. Dr Stuart eventually agreed and I then looked forward to a visit from Dr Yosef my oncologist.
Dr Yosef eventually appeared and he was motivated to sort out my pain situation. He prescribed Fentanyl patches, Oxinorm and Pregablin (I can't be bothered looking for the spelling - just drugs). A couple of new nurses came by and fitted my patch which I was told would take 12 hours to kick in. I was also given Oxinorm on demand which I latterly found out made me so sick, worse than the affects of no morphine at all. Oxinorm is an opiate however is synthetic and has different side effects than our morphine. Once my pain situation had been sorted, Dr Yosef came into the room and sounded and examined me. He was hoping that I would have another chemo round on Monday a week from that day. At this point I decided I was the Ring Master. I knew that I hadn't eaten for at least 5 days on the last round of chemo and that I hadn't eaten anything whilst in hospital at all. I was so weak and felt that a chemo round would end me. I begged with Dr Yosef to delay the treatment and eventually he agreed and decided a renewed schedule for the treatment.
I slept fine on Monday and slept knowing that I could now sip water yet still no food. Sheila, a head nurse from Oncology, came to the room on Tuesday morning to discuss the re-arranged schedule and the fact that Dr Yosef, upset with the progress made so far, had completely changed my chemo regime. After a few discussions back and forth we decided that the best schedule would be to look at a Herceptin infusion on Friday 24th with the chemo round of Taxol and Carboplatin on the following Monday. This would give time to monitor the results of the Herceptin application as this is not a traditional chemotherapy drug and can have serious side effects. Sheila, Carol and I also agreed that I should have a port-a-cath fitted in order to minimise the damage to my arms and this operation is now scheduled for Thursday 23rd. Essentially I get a port fitted in my chest and that is where all infusions or requests for blood will go from now on. Am fairly worried about the procedure at this point as it is probably conscious sedation but have decided to have a chat with Ross Hall next to see if they can knock me out. I also have an Echo arranged for Tuesday in order to baseline my heart prior to the Herceptin as this can cause issues in that area.
On Monday and Tuesday nurse Helen attended to me. She was entirely dedicated to managing my pain and she went that extra mile in order to make sure that I was comfortable. She noted herself that she hadn't slept on Monday night as she was thinking about how to fix me and I remember thinking that the circus actually comprised of caring individuals who were just trying to do their role under testing conditions.
Dr Stuart came by with the good news on Tuesday that I could be released on the condition that I followed a strict diet at home and continued to take the antibiotics. It was a long time between this meeting and me actually being released as paperwork was generated and medicines collected. Eventually a nurse came by and my cannula was removed. Because of the amount of infusions and the fact that I wasn't using my left hand for anything, my hand had swollen up like a baseball glove. The hand was unusable and I struggled to make a fist, I was assured however that this was normal and eventually it would go back to normal which it did.
We came home on Tuesday night and things have been fine ever since. I decided that the Oxinorm was causing too much nausea and have reverted to the Sevradol which is comforting again. This week I have assumed the position once more in front of the TV watching mountain men, gold rush and other Discovery goodies whilst slipping in and out of consciousness. On Wednesday Jo from MacMillan came out and helped us round the medication requirements with the pharmacist and the surgery. I showed her the tumour under my left arm which looks like it is about to burst and she suggested that we call in Shona the district nurse in order to dress it. Shona came by on Thursday and suggested that covering the wound would break it and she would rather leave it just now. She left a 'Just in Case' box and left us to get on with things. On Friday Carol collected my mum and dad and we spent the afternoon together. I was slipping in and out of conciseness due to the morphine however the rest of the day was as normal and by this time the pain relief was working well.
So that is everything up to date apart from some other notable issues. The tumour in my mouth continues to grow and shrink however I have since discovered that my teeth are becoming loose and eating is still an issues even though I think no food is getting stuck anymore. I think I've probably lost anther 4kg or so and am now trying to build up my strength for the next round of chemo. The circus is in standby mode for another few days and I'm feeling pretty normal at present.
