I was still sat in the bedside chair with a blanket over my shoulders, with another over my knees and my left arm resting on a pillow laid across my lap, they examined my notes and discussed my current condition and then the consultant asked me how I was feeling.
I think had I been in top form he would have received a fairly acerbic reply however all I managed to splutter was that my hand hurt, and that I was very concerned about my headache and blood pressure levels which had been recorded at a very high figure something like 210 over 112, he checked my notes again and said that he was happy that this was a temporary situation and replacing my notes on the end of the bed the whole group moved onto the next patient.
I was completely phased by this as my GP had spent the last three years trying to get my blood pressure under control and now it seemed that it was all going to pot.
This brought me to such a low ebb that I just gave into my emotions and tears started to run down my cheeks and I was still in a state when a young nurse came to do my ‘obs’ she asked what the problem was and I repeated that because my voice was weak I felt that I was not being listened to and that no one was any taking notice of my concerns over my blood pressure levels or more particularly my headache which worried me a great deal as both my parents and three of my grand parents had died from cerebral haemorrhage.
By now the consultant and his team had left the ward so she asked me what she could do to help, I replied that if she could get me something to write with so that I could send a note to the consultant it might get the message across. She went to the nurses station and returned with some paper and a pen. I scribbled a note and asked her if she would take it to the consultant, which she did.
It’s amazing what the written word can achieve, the final bottle of the first batch of IVIG was now empty and it was about to be replaced with a new bottle when the senior nurse returned and said she was not going to connect it as the consultant had requested that I go for a CT scan, the thought of not having to continue with the pain of the infusion was one of those little victories which can brighten your mood no matter how hopeless things seem.
However when Helen arrived back in the ward I became overwhelmed again and through a mixture of sobbing and coughing I managed to convey what had happened, she looked concerned but said that she was pleased that I had sent the note and asked why I was being sent for a CT scan, I said I didn’t know but hopefully it would throw some light on the situation.
While she was there a porter arrived with a wheelchair, Helen helped me to transfer between chairs, she wrapped me in the two blankets placed the vomit bowl on my lap and held my hand and walked with me as I was pushed out of the ward, she said that she would come back at lunch time to see how things had gone.
The air was cooler in the corridor and people were moving purposely about going this way and that, the porter tried to chat but because of my lack of voice I could not reply so the journey to the radiology department was mainly in silence, when we got there I was parked next to a wall and the porter gave my notes to one of the assistants who then came across to me and as they do asked my name and checked my wrist band after which she entered through a door in the opposite wall.
After a while she reappeared and wheeled me into the scanner room, I had had CT scans before and so I was not phased by the sight of the large white vertical doughnut at the end of the bed in the middle of what was a fairly small room but I did remember the claustrophobic feeling of being inside the scanner.
A disembodied voice called my name over a speaker and I turned to face a small glass panel in the wall at the foot of the bed where a lady who looked quite green behind the glass spoke into a microphone and said that she was the radiographer and explained what was about to happen then the assistant helped me from the wheelchair onto the bed and covered me over with the blankets to keep me warm, I managed to explain to her that I might have trouble laying on my back because I would probably start coughing again, she smiled and said that I should try my best to keep still but that if I had a problem I should raise my arm and she would push the button to make the table slide out of the scanner.
The radiographer said that the table would slide my head and shoulders into the centre of the doughnut and then the machine would start and would continue for about 15 minutes, as my head passed into the machine I had this uncontrollable feeling of drowning and as I couldn’t sit up I panicked and raised my arm waving it agitatedly, almost immediately the sliding table reversed and just as my head cleared the outer edge I quickly sat up and coughed violently, the assistant rushed forward with the vomit bowl and paper towels but after a while the urge to cough subsided and I was once again set in motion into the scanner.
I don’t think that unless you have had an CT scan that you can appreciate the proximity and level of noise of the scanner as it does it’s work, a rotating loud hum is not nearly a close enough description.
However by swallowing frequently I managed to stay still enough for the scan to proceed and after the allotted time the radiographer said thankyou from behind the green glass window and the table slid out of the scanner, I was helped into the wheelchair. The assistant duly wrapped me in the blankets and perched the vomit bowl on my lap she then wheeled me out of the room and once again parked against the wall, I was starting to feel chilled and was very pleased to see the porter coming along the corridor towards me to take me back to the ward.
On route to the ward we past the discharge lounge and Ken was in the doorway, when he saw me he smiled and did a thumbs up sign but I knew things were not going well and gave him a thumbs down sign back, his smile changed to a quizzical expression but the porter kept going so there was no time to stop and say what had been going on.
It must have been lunch time when I got back to the ward as Helen was already there waiting for me to return, she helped me from the wheelchair back into the bedside chair and I managed to whisper to her what had occurred in the radiology department but that I still had no idea what the problem was however I remained slightly buoyed by the fact that my condition had not seemed to have declined as I thought it would if I did have the Miller Fisher Syndrome.
The food trolley went by and one of the catering staff came across and asked what I wanted to eat, Helen explained that I couldn’t swallow at the moment and they said they were surprised that the nursing staff hadn’t put a NIL BY MOUTH notice over the bed.
Helen spent a good part of an hour with me and just before she was about to leave a nurse came over and said that I was going to be sent to the Ear Nose & Throat department after lunch to try to see why I continued to cough so much, Helen was pleased that things were happening towards finding the diagnosis and seemed a bit happier as she left to go back to work.
About 2.00pm another porter arrived with a wheelchair and after repeating the transfer from the bed side chair complete with blankets and vomit bowl we headed off to the ENT department.
This time I was parked in the waiting area with other patients and my notes were handed over as before, however you feel a bit exposed sat there in a bed gown and blankets when everyone else is in their normal day clothes but I didn’t have to wait long as I was called as soon as the examination room became free but as with the earlier A&E department experience I felt a certain resentment aimed at the queue jumper from those who had been waiting for some time.
I was wheeled into a small room, the normal examination chair had been moved to one side and the wheelchair was positioned next to the desk. I really couldn’t be sure where the consultant hailed from but in a broad possibly Asian accent he checked my name and wrist band and asked me what the problem was which surprised me as I assumed it must have been written in the notes, however I managed to whisper to him the series of events up to now and after having to repeat a couple of responses he said OK and said that he wanted to have a look down my throat.
First he put on a head light and asked me to open my mouth wide, he immediately noted that my tongue was not straight, he then
tried to press down on my tongue with a spatula which was definitely a wrong move as it caused an involuntary retching movement, my head flew forward at speed, my forehead collided with the consultants head light and had he not moved out of the way as quickly I’m sure that I would have swallowed the spatula and half his forearm.
He called for a nurse who on entering the room saw the mayhem and immediately went to the dispenser to get some paper towels to wipe me down.
The consultant went to the sink to wash his hands and after a short time I managed to stop coughing and compose myself again, he then said that he wanted to pass an endoscope up my nose and down my throat to look at my larynx.
Before putting the endoscope up my nose it would be necessary to anaesthetise the nasal cavity and with that he took a small bottle with a long thin nozzle and sprayed a liquid up both my nostrils, well as you can imagine the coughing and spluttering started all over again but luckily this time the nurse was at hand to deal with the ejected bodily fluids and the anaesthetic which tasted strongly but not unpleasantly of bananas quickly took effect and things calmed down once more.
The ENT Consultant now sat himself down in front of me, he asked me to sit back in the chair with my head back slightly and he asked the nurse to hold my head still from behind, he proceeded to coat a thin black tube with a lubricant gel and then started to push it up my left nostril as he did so he could see the progress of the tube on a computer screen over my left shoulder, I could feel the movement of the tube in my nose and throat but there was no real discomfort.
After a few ‘Mmms’ from the consultant he asked me to try to say ‘Eeeee’, then again and then again and then there was another ‘Mmm’, he said that my left larynx seemed frozen and that it was not moving to close with the right larynx and that was why I could not make the usual sounds with my vocal cords and that I was coughing all of the time because I could not close my larynx properly to prevent mucus from getting into my trachea, he then asked I wanted to have a look.
I had not looked inside my own body before and I wasn‘t sure that I wanted to now but my curiosity quickly got the better of me and I nodded, the nurse then let go of my head and the consultant moved my seat slightly so that I could see the screen – how interesting – the whole screen was a mass of different colours from pink through red to purple, in the centre of the screen was what appeared at triangular shape with a flat bottom and two sloping sides both of which were partly edged in white.
The consultant explained that the white edges were my vocal cords and then I was asked to try and say ‘Eeeee’ again and as I did so it was clear that the right hand larynx was vibrating and closing towards the middle but that the left larynx was completely stationary.
He turned me to face him again and he slowly removed the tube from my nose, the nurse was there with paper towel in hand to wipe away the excess gel and the consultant wrote some notes into the file which he handed to the nurse who then wheeled me back out into the waiting area where the porter was already in place to take me back to the ward.
On the way back to the ward I was feeling a little more positive now that I had seen for myself what was causing me to cough all the time and why I couldn’t speak properly, as a practically minded person it seemed to me that once a problem was understood it could then be solved.
I got back to the ward and after being offloaded I got changed into one of my nightshirts so that I would be a bit more respectable for Helen when she came back, I pulled the curtain around the bed with my good arm and then proceeded to remove the hospital gown and struggle into the nightshirt, once done I opened the curtains again and got onto the bed under the top cover.
Helen popped back to see me before she went home to sort out Jim’s evening meal, with my quiet voice I managed to give her the gist of the afternoons events in ENT and how I had actually seen my larynx on the computer monitor, I said that it was now quite clear to me why I coughed a lot and could not make usual voice sounds, she was pleased that I was encouraged by what I had seen and like me felt that now the problem had been identified that constructive steps could be taken to deal with it.
While she was gone the consultant came back to the ward and said that as my breathing had remained stable and that there was little sign of further symptoms of Miller Fisher Syndrome that it had been decided not to proceed with anymore IVIG treatment until the results of the CT scan were known tomorrow.
So when Helen and Jim came back to the hospital for visiting time I was in a more pleasant frame of mind and we spent time talking and generally bolstering each other against the recent events so that when it came time for them to leave we felt that some progress had been achieved and that hopefully the results of the CT scan tomorrow would give a better insight into a way forward.
With goodbyes over and as I did not have the IVIG treatment to contend with I got onto the bed, the nurse came and piled up my pillows so that I was almost in a sitting position and like this I was able to doze but as I fell into a more deep sleep my head would roll back and the coughing would start again so after a while I transferred myself back into the chair and set the pillow on the over bed table so that I could lean forward with my head on it and in this way I managed a period of intermittent sleep.
Tuesday 29th November 2005
The fact that I could walk about classified me as ‘self caring’ and therefore I was expected to take care of my daily ablutions myself but to be honest I couldn’t have cared less this morning, it wasn’t until Helen came in at about 10.30am that she persuaded me to have a shave and a shower and helped me into the ward bathroom.
I did manage a one handed wet shave but showering was a bit of a problem as to enable me to wash around my left side I had to slap my now nearly lifeless left arm and hand onto the shower wall with my right arm and let it stick there until I was finished, Helen tenderly washed my back and I have to admit I did feel a bit brighter and probably smelled a bit fresher when I was dried and dressed in clean clothes.
Compared to what had happened over the past few days the next couple of hours passed by pretty uneventfully with Helen and I making small talk that desperately tried to avoid the main issue while nurses and cleaners busily carried out their normal daily routines.
As I laid on the bed with Helen sat in the chair at my side the lack of good sleep the night before caused a general weariness to come over me and I said that I needed to try to get some rest so she adjusted my pillows for me before she went back to work and I dozed off for a while.
At about 3.30pm the consultant came back to the ward and headed straight for my bed and as he got close he pulled the curtains back around the bed behind him, I assumed that I was going to be examined again, I certainly was not prepared for what came next.
The consultant said that he had received the results of the CT scan and the ENT consultants report and that unfortunately the news was not good, he said that the scan showed a lump to the edge of and just below my skull on the left hand side and that based on the symptoms I was suffering and the fact that I had had a melanoma removed from my left ankle about a year previously that he and his colleagues were of the opinion that a rogue cancer cell had travelled around my body and lodged on my brain stem and was now growing there damaging the nerves which was the cause of my partial paralysis.
It was like a lightning storm had just gone of in my head, I could feel the blood drain away from my face and a cold clammy feeling made me shudder, what had he said …….. cancer …….. brain stem, what was he talking about? - all I could do was sit and stare at my feet.
The paralysis, he continued meant that the cancer was well established, it was inoperable and that it would lead to a fatal outcome, however with treatment such as chemotherapy and radio therapy I might live for up to three months although he could not be sure how quickly the cancer would progress but it did seem to be an aggressive malignant lesion and therefore he could not offer any better prognosis.
He put his hand on my shoulder and asked if I
understood what he had said, I had understood the words but could not comprehend the meaning ………. what had he said …………… I was going to die in three months or sooner from some unseen globule of matter destroying the nerves in my neck, this was so surreal that a picture flashed into my mind of a ‘Pacman’ chewing away at the nerves in my neck which seemed to be made of spaghetti.
I couldn’t make my thoughts stop rushing around as though my inner self was darting about, looking in every corner of my mind for some place to hide from this awful truth, everything seemed to be going on at a hundred miles an hour.
After a while, I don’t know how long, it seemed a long time but was probably only a few seconds I managed to gain some control and looked up into his face, this was the man who only the day before had said that I wasn’t going to die and now he was telling me that I had less than three months to live, he actually looked sad.
All I could say was that I needed to see my wife, the consultant knowing that she worked at the hospital said the he would go and see her himself, he briefly stepped outside the curtains and called for a nurse to come and be with me while he went to find Helen.
A DEATH TO DIE FOR Page 3