Tingha and Tucker finished off by wiping my back with a swab and applying a dressing, they said that I should lay as I was for a few minutes and then carefully roll onto my back and that I would be alright to move in about an hour.
I found out later that because Tucker couldn’t find the place to insert the needle he had gone to the maternity department and summoned the assistance of the anaesthetist who was experienced at giving epidural injections to pregnant women, I suppose I should thank him really for not trying to stumble on with the procedure himself and possibly causing me an injury, it can’t have been easy for him to go to another department and admit that he was unable to complete the lumber puncture.
Anyway I was emotionally exhausted and completely knackered after all the goings on and fell asleep on top of the bed in the foetal position and I was still asleep when the nurse came to administer the sleeping draft and apply the atropine patch, she woke me up and then helped me into my nightshirt, I got into bed and then she connected the NG tube to a new food bag.
I woke in the night again and rinsed my dry mouth out with cold water but the rest of the night past without incident.
Friday 2nd December 2005
I came to when the early nurse entered the room, my tongue was seemingly super glued to the roof of my mouth and I felt that I had to swill my mouth out with cold water and get some flexibility back into my tongue, so after carefully unplugging my food pump from the wall socket I wheeled the drip stand into the shower room, acknowledged myself in the mirror, probably to confirm that I was still here and then bent over the wash basin and set to slurping water from the running cold tap.
I was starting to get concerned that I wasn’t getting enough fluids and although having past the SALT test earlier in the week albeit with some difficulty I was still anxious that if I didn’t manage to swallow that I would loose the ability altogether, however all attempts at trying different liquids had so far ended in messy ignominy.
On returning from the shower room still in my nightshirt I sat in the chair rather than lie back on the bed, my mouth still felt like a drought cracked field and I saw the water jug on the over bed table still had some small unmelted pieces of ice cube, I thought that maybe if I put a small piece of the ice in my mouth and let it melt that my damaged throat could deal with the small amount of liquid so having fiddled around in the jug of water with my fingers trying to get hold of the slippery ice I finally managed to put a piece in my mouth.
Initially it seemed to be successful but then as the ice melted more quickly the extra liquid got down the wrong side of my throat, past my damaged larynx and into my airway with the usual convulsive coughing fit.
Now on previous occasions these attempts at swallowing had ended up with the uncontrollable ejection of the contents of my mouth e.g. messy ignominy, however on this occasion while inhaling after the first cough the remaining piece of ice slid down my throat, had it gone the same way as the water goodness knows what might have happened, but it didn’t and afterwards as I drew breath I realised that I had felt the small piece of ice go down my throat, I had actually felt the swallow.
It was like someone had switched a light on in my brain and I wanted to see if I could actually do this on purpose rather than by accident so I fished around in the jug for another piece of ice and placed it in my mouth, then by leaning my head to the left I worked the ice along the inside of my cheek until it was on my tongue at the back of my mouth and then with one movement I tried to squeeze my tongue against the roof of my mouth while at the same time carrying out an exaggerated action similar to a tortoise reaching for an offered lettuce leaf.
Bingo, I could feel the ice go all the way down and apart from a slight involuntary chest heave the whole process had been successful.
This was another of those unexpected small victories along the way that can give you an uplift, a little glimmer of hope that enables you to push back against the ever present weight of an inevitable outcome, I had a sense of excitement but mixed with disappointment that there was no-one there to share my achievement with.
Emboldened by my success I had another go and another until the few remaining pieces of ice had gone, still wanting to practice this new skill but having no ice I shuffled to the shower room with the jug and poured most of the water away and on returning to the chair I pushed the call button.
When the nurse came I managed to get across to her that I would like some more iced water, she gave me a very old fashioned look as much as to say that is not what the call button is for but with good grace she took the jug away and returned a short time later with another that had a full compliment of ice cubes which clinked together at she placed the jug on the table.
Wanting to practice this new secret skill some more I waited until the nurse had left the room and then with the jug resting on the chair held fast between my knees, I took an ice cube from the water, the first problem struck me immediately these were new, full size ice cubes, there was no way that I was going to be able to swallow one of these whole.
I tried nibbling off a corner of the ice cube with my front teeth but the strength of my bite only enabled me to scrape off a few shavings which quickly turned to water in my mouth, cue coughing fit and lap full of cold water as the jug wobbled and the water slopped out.
I put the ice cube back into the jug and again shuffled to the shower room where I managed to squeeze most of the wet out of my nightshirt using the hand towel.
Back in the chair I took another ice cube but this time I placed the jug back on the table so as not to repeat the spillage, I looked around but there were no implements that I could use to break up the ice cube so there was no alternative but to put the whole thing in my mouth and break it up using my back teeth.
I knew that this could be fraught with all sorts of problems but I couldn’t see any alternative so carefully placing the ice cube in my mouth and once again leaning my head to the left I bit down quick and hard not wanting to extend contact between teeth and the ice for any longer than necessary.
The result was that the ice cube exploded into the consistency of a course slush puppy and quickly leaning forward I let the broken ice fall into my open left hand and then picked out one of the larger pieces and went through the ice swallowing trick once more.
This left me with the second problem of what to do with the rest of the crushed ice, do I put I back into the jug or get rid of it, please don’t ask me why but in the end I took a wad of tissues from the box and wrapped the ice leaving it to melt on the table.
Now I sat back in the chair, inwardly and probably outwardly smiling at my success and I could hardly contain myself when Helen arrived, her face took on a quizzical expression as she could see that I looked much happier than of late and no sooner had she taken off her coat and sat on the bed I managed in my now usual hoarse whisper to tell her of the swallowing trick I had learned with the ice cubes.
She was very happy for me and insisted that I show her and having unwrapped the previously crushed ice and gone through the whole process again successfully she put her arms around my shoulders and kissed my forehead.
The rest of the morning followed its usual pattern of events and after the nurse replaced the food bag I said to Helen that I wouldn’t mind trying to go for a walk, just to get my legs moving, she said we could try a walk to the nurses station an back to see how I got on.
Helen helped me put on my gown, I then reached across the back of the chair and unplugged the food pump which had battery back up and with that Helen opened the door and for the first time since I had arrived in the room I ventured once more into the corridor.
After the first few steps I felt a bit light headed but decided to continue, once we reached the nurses station Helen said that I shouldn’t do too much on the first occasion so we turned around and headed back to the room passing one of my regular nurses on the way who smiled and said she was pleased to see me out and about.
Once in the room Helen helped me back onto th
e bed and made sure that the food pump was properly plugged back into the mains, she said that it was time to get off home and that she would see me again tonight and that she expected other family members would have arrived by visiting time.
As I didn’t have the attraction of the meal trolley to wait for I plugged the card into the TV and switched through a few channels, I wasn’t interested in the news as it seemed pointless to learn about things that might not be resolved in my remaining short lifetime so I chose a history channel, plugged in the ear phones and tried to watch a programme about what the Romans had done for us while I waited in anxious anticipation of what might happen later.
I don’t want to sound unthankful by I knew that this evening’s visiting time would be testing because along with Helen and Jim my brother Andy would be returning, bringing his wife Sue also my sister Diane and niece Katherine were coming and although no matter how dire my situation was I had been involved with it for some time now which had slightly taken the edge off of the awfulness of it but this being the first time the latter three in particular had seen me since they had heard of my prognosis meant that this would be the first opportunity for them to release their emotions and I knew that I must respond to each one.
They arrived about 7.00pm, Helen and Jim first and then the others each one tentatively entering the room in solemn mood not sure what they would see or how bad I would look, I tried to put on a welcoming face with a smile but it was as I expected a very emotional time and then about half an hour later just as things were getting beyond the initial tearful stage some other friends from the South Coast arrived and the whole gathering became sombre again as they said how sad they were to find me in such a parlous state.
The emotional energy of it all was very draining and after a while, Helen, seeing me starting to fade suggested that as they were all staying at the house over the weekend and would be coming to see me again that it might be better to let me rest now so that I would be refreshed for tomorrow to which they agreed and after some tearful farewells they left, briefly leaving me and Helen to say good night.
Until now I had craved the visits of Helen and Jim as they brought a certain amount of normality to the situation but on this occasion being on my own brought a real sense of relief, I realised however that this was how things would be for the next two days because I had been told by Andy that many other family members and friends were coming and I could see that it would be my responsibility to let them say their goodbyes to me.
This thought brought home the finality of my situation and what with the earlier emotion of the evening I was unable to stop the tears.
After a while there was a quiet knock at the door and the new consultant entered, he said that though it was late he thought that he would call in on his way home from Birmingham to let me know that the test on my spinal fluid had shown that it was clear of cancer cells.
I thanked him but after he left and in a state of hopeless frustration at the news I texted to Helen that ‘They keep telling me that I am going to die but all the tests come back negative’, she texted me back saying that it was some good news at least and that she loved me and would see me in the morning.
The nurse came and gave me my penicillin and diazepam injections and fitted the atropine patch, I turned out the over bed light and tried to settle down to sleep.
Weekend - Saturday 3rd and Sunday 4th December 2005
I had actually had a reasonable nights sleep and only woke when the ‘early’ nurse came into the room, when she opened the curtains I could see that the weather was set to be fair, I looked at my phone to see if anyone had texted me and saw the date and realised that it was Dad’s birthday, he had died in 1974, I remembered that the last time I saw him alive he was laying unconscious in a hospital bed in Winchester, I said to myself ‘Happy Birthday Dad, see you soon’ and raised an imaginary glass in toast to his memory.
Hospitals become strange places at the weekend, the routines and faces change, there is far less hustle and bustle and the people you have come to trust to stick needles in you each day have gone and as very few of the staff know what has happened to you each one that arrives at your bedside wants to know about your condition and when you have very little voice at all you wish that you could hang a placard with the details on it round your neck to save having to repeat the story so many times.
The only text was the one that Helen had sent the previous evening and as I knew that folk would be arriving from about 10.00amI decided to get going, the feed bag was not empty so I switched the pump off and disconnected the NG tube and headed to the shower.
I made a special effort to wash and shave this morning and with my one good arm managed to rinse through my hair, however cleaning my teeth with a brush proved to be a complete no no so using my finger I rubbed toothpaste around the inside of my cheeks and by leaning forward over the basin I was able to rinse the residue away, I even managed to dig out the deodorant spray from my wash bag and gave my underarms a squirt, after all there was going to be a lot of close proximity today and me being smelly wasn’t the last memory I wanted people to have of me.
I put on a pair of track suit bottoms and struggled into a polo shirt so that I would look reasonable for people when they arrived, I moved the chair as far back as I could without interfering with the feed pump and then sat down and reconnected my NG tube however realising that there was still quite some time to wait and feeling apprehensive of how today would turn out I stood up and moved the TV to where I could see it, plugged in the earphones and watched another documentary to try and take my mind off of things and settle my nerves.
Helen and Alex arrived a bit early, I think as much as anything Helen wanted to make sure that I was presentable for the visitors and then Andy arrived about twenty minutes later with nephews and nieces and other family members who proceeded to take up residence in the visitors lounge and Andy, as acting subaltern, marshalled them in small groups to come and visit me in my chair at the bedside, after a while one group would leave to be replaced by another and so it continued.
In the first round of visits some would arrive in tears while the faces of others showed the disbelief they found themselves in to find me in this parlous state and because of my throat and lack of a voice the conversation tended to be stilted with little exchanged beyond utterances of sympathy and how on earth this could be happening, but as the day wore on and people were on their second or third visit the topic of conversation became lighter and towards late afternoon we were managing to reminisce about the past and the good times we had spent in each others company, so although it had been stressful at the beginning of the visits as time went on we could find little things to smile about and the mood was a more relaxed.
Helen for the most part stayed to comfort and bolster me but the emotion of it all would get to her from time to time and she would have to leave to regain her own composure before she could return.
Early in the afternoon my business partner from Southampton came to see me, we talked briefly of what would happen to the company after I had gone but it was not a subject that either of us wanted to dwell on, however in order to keep things on an even keel he asked me to give him the access codes to my computer records so that he could see what appointments he may have to cancel, invoices to send, money to chase etc. so with Andy’s help I made a list and after assuring me that whatever happened he would make sure that Helen would be looked after by the company he left to go to the house and sort out what he could
By about 6.00pm I was feeling very tired and my irritating coughing fits were becoming more frequent, it was now dark outside and some of the visitors had already made their way back to the house to start preparing food for the others that were to stay overnight so Helen suggested to Andy that as it had been a long day for everyone, particularly me, it would be best if I had some peace and quiet so that I could be ready for the visiting again tomorrow.
After all the goodbyes and hand waves as people left I received a fin
al hug and a kiss from Helen and I was once again on my own, but my head was still swimming with the thoughts and sounds of the day and all the people who had been there and the things that had been discussed so I laid on the bed and swung the TV around and clicked through the channels until I found another historic piece and just steeped my overactive brain cells in the programmes narration to calm things down.
Half an hour or so went by and realising that I was not following the programme at all I flicked the switch on the TV to off, removed my earphones and as I laid back onto the pillows it surfaced in my consciousness that for some of those who had visited today and who I had known for the greater part of my life, tomorrow would probably be the last time we would set eyes on each other I started to feel very sad indeed.
I was still in this reflective mood when the nurse came in to give me my night time NG food bag and injections, so that the tubes and wires could be connected the nurse helped me put on a nightshirt and I got into bed, once the nurse had sorted out the technical stuff she informed me that they had run out of atropine patches and would not be able to chase up a new supply until Monday, I told her that I was concerned at this news because it was only the drying effect of the patches that was keeping my throat clear of mucus and allowed me to get any reasonable sleep.
A DEATH TO DIE FOR Page 7