A DEATH TO DIE FOR
Page 16
I had got through the yellow nose cone section of the rocket without much of a struggle but felt sure that the green and purple sections would be a mission too far so feeling suitably refreshed I dropped the rest of the lolly into the waste bin and continued on my way back to the ward.
On my return I texted Helen to say that she didn’t have to bother with the crushed ice to day as I had just eaten an ice lolly, well done came her reply text which also said that she would be leaving the house soon.
My mood had lifted a bit after my sortie, another hump in the roller coaster of emotions I seemed to go though every day which totally amazed me, up one minute and down the next although hardly surprising when I thought of what was happening to me.
As I knew that I had a couple of hours before Helen arrived I decided to make an effort after all and have a shower and a shave which was completed well before she turned up and so she was none the wiser of my lacklustre start to the day.
It was good to have Helen to myself after the weekend visits and although the conversation never wandered far from the inevitable it was a pleasant afternoon and early evening and having each checked that our golden cord was secured to one another we said our goodbyes.
It had been a nothing sort of day really just waiting for someone to let me know the outcome of the PET scan and when I would have the biopsy done but I felt that we had made the best of it and was pleased when the phone went ping! with the arrival of a text to let me know that Helen was back home safe.
Tuesday – 20th December 2005
During the morning, following the early washroom rumble, I received information via a nurse that because of the amount of non-elective surgery that was having to be fitted into the operating theatre before Christmas the ENT surgeon due to carry out my biopsy was running out of time and it would now probably have to be completed in the new year.
On hearing this news I somehow felt a bit guilty that I had cheated the hospital on the basis that I had already had the PET scan but now I might not be around for them to take their pound of flesh.
However the nurse went onto to say that during the same case conference it had been said that if my condition did not deteriorate significantly in this coming week that there was a possibility that I could be sent home for Christmas Day and Boxing Day so that I could have time at home with family and friends returning to Birmingham or more likely Hereford hospital.
This was a real surprise, at no time had anyone previously suggested that I might get to go home for Christmas and I couldn’t wait for Helen to arrive at visiting time so that I could let her know about this new development face to face, I felt that a text would not convey the same emotion.
I was sat in the chair watching the TV just prior to lunch when another dietician lady came to see me, she was younger than the previous one and a bit more informal, I removed my earphones, switched the TV off and moved it out of the way.
She perched on the edge of the bed and asked me how was I getting on with drinking thickened liquids, my expression probably told her all she needed to know, none the less she asked me whether I had been using the thickening agent at all and looking floorward, I rather guiltily shook my head.
Evidently she had either been at the case meeting or had been informed of it’s conclusions as she knew that it was likely I might be going home for Christmas and she told me that it was now her challenge to get me eating pureed food so that I could at least enjoy something of my Christmas dinner.
I explained what had happed during the attempt at mousse swallowing the previous week, but of course her colleague had already made her aware of the outcome, in fact I thought that probably this lady had drawn the short straw or miscalled a flipped coin in the office for her to have been landed with this task and I was a little surprised that she had not girded herself with a plastic pinny and goggles for protection against flying food debris.
However her positive attitude gave me encouragement to try again, she said that she would pop back in a minute with something to test me with.
On her return I could see that she had a dish with a spoon in her hand and several sheets of kitchen roll draped over her arm, she sat back on the edge of the bed, laid the dish on some kitchen roll on her lap and tucked the remaining paper into my shirt collar as a bib.
The bowl contained a Weetabix biscuit soaking in some milk to soften it, she said that I should take a small portion of it on the spoon and put it on my tongue but before trying to swallow it that I should turn my chin over my left shoulder.
I raised an eyebrow at this but never the less carried out the instructions.
It was an eureka moment.
As I closed my eyes and swallowed I half expected to pebbledash the bed covers, however the food slipped down my throat almost as normal without any discomfort or reflux at all.
I opened my eyes and turned to look at her, I don’t know who’s smile was the widest.
I tried again with equal success, she explained that by turning my head over my left shoulder I was giving my one good larynx less distance to travel to close off my windpipe when I swallowed and so all of the food was going down to my stomach not to my lungs.
She let me have another go warning me not to take too much on the spoon at a time.
I asked her why someone had not told me of this technique before and saved my having to suffer all of the nasal porridge, she shrugged her shoulders and smiled diplomatically, however she said that as I had not been eating solids for a few weeks that I should not overdo things as my stomach would not cope.
She suggested that it would be best if I continued with the NG tube for the time being and gradually increased the amount of solid food intake over the next few days, I agreed and thanked her profusely telling her that she had pretty much made the most positive impact on my life in hospital.
She smiled again and left with a spring in her step, I got the feeling that she was going back to the office to high five the first person she saw.
When Helen arrived I couldn’t stop smiling as she walked towards my corner of the ward, the news of the possible home visit for Christmas and the food swallowing just bubbled out of me.
Towards the end of the afternoon I filled in my lunch order for the next day, it was the first time I had done so since coming into hospital, I felt confident of being able to tackle the chicken in gravy with mashed potato and mixed vegetables although I knew that I would not be able to finish it all.
Helen had already left when the evening tea trolley came onto the ward, I couldn’t resist having a go so I asked for a milky cup of tea, I took some tissues and placed them on my left shoulder.
I then carefully lifted the cup to my lips and slowly took a sip and held the warm liquid in my mouth just in case I might have another extreme tea drinking session and to avoid spilling tea everywhere I placed the cup back on the over bed table.
I slowly turned my head over my left shoulder while holding the tissues in place with my right hand and then swallowed.
There was no explosion, no undignified nasal deluge, not even a drip off of my chin, a result in deed, no-one else on the ward could have guessed why the bloke in the end bed had such a silly grin on his face and an empty cup in his hand.
As the day drew to a close I felt quite buoyed that I had achieved something positive and that if all went well I might even get to go home for a couple of days.
Wednesday – 21st December 2005
This morning was the dawn of a new era for me, having been denied for so long I had got up early washed and dressed and was now excitedly awaiting the clatter of the breakfast trolley, I could hear it approaching and as the lady did the usual ‘U’ turn to bypass my bed I raised my arm and signalled that I would like her to stop.
I said I would like two Weetabix with quite a lot of milk please which she prepared and then placed the dish with a spoon on the over bed table, I moved from the chair, sat on the bed and pulled the table over my knees and taking small spoonfuls finished the lot in s
hort order without any mishaps.
Pleased with my accomplishment I texted Helen with the news that I had eaten TWO Weetabix for breakfast and managed to down a cup of tea last evening, she reply texted with ‘excellent news, well done’.
For the rest of the morning I busied my self with watching a bit of TV and completing a couple of puzzles in the magazine that had been brought in but mostly my thoughts were on tasting the flavours of the hot food that would be coming on the lunch trolley.
It was amazing how hospital food had taken on the aura of fine dining.
The plate with cover and eating irons were delivered to the over bed table, the smell alone was almost satisfying enough but the thought of actually eating hot food again spurred me on and as the dinner lady retreated I approached the hoped for gastronomic delight with an over inflated feeling of expectation which burst as soon as the cover was lifted.
A small portion of chicken breast lay in a puddle of thick brown liquid which lapped at the edge of a dollop of mashed potato and mingled with the small assortment of mixed vegetables, undeterred and by using the technique I had been shown I managed to consume about a third of the chicken in pieces small enough to swallow whole, most of the potato and a couple of small florets of broccoli, after so long without and although tricky to accomplish it had proved very satisfying.
As I sat there content with my achievement I noticed a tall well built man dressed in green scrubs headed in my direction, he stopped and stood just in front of the chair.
He asked me if I was Mr Wilding, which I confirmed he then looked at my wrist band and asked me my date of birth, which I also confirmed, he then introduced himself as the ENT surgeon that had been tasked with taking the live biopsy.
He flipped open the file he carried with him and said that he had looked at the results of the PET scan and had become concerned about carrying out the procedure for two main reasons.
The first reason he continued was that he didn’t know if I had been made aware but the operation would need him to open up nearly half of the side of my face to gain access to the site of the supposed growth which would leave a large scar.
Opened mouthed I shook my head slowly.
Secondly he went on, but more importantly he was of the opinion that if he actually took a biopsy that it would have catastrophic consequences.
My stomach nearly turned over as I tried to deal with the recent consumption of food and this scary new information.
He closed the file and said that he would call a further case conference to discuss the way forward and that either he or the consultant would get back to me.
I felt all of my positive achievement so far today had just been washed away and I was sitting there still a bit dazed considering this latest development when Helen arrived, I told her about the visit of the surgeon and she asked what had he said he thought the problem was.
I realised that in my shock at what he had said I had not asked him, so she said that she would try and get hold of someone to find out, but before she could make a move one of the consultants junior doctors approached the bedside.
Helen started to ask him about the surgeons visit, he politely stopped her and said that he was sorry but he was unable to discuss anything further at the moment however he had been sent to let me know that there was going to be a further case conference in the morning when the consultant would be present to discuss my diagnosis.
He excused himself and left.
We were left in a state confusion, nobody had given us any concrete information at all about what was to happen next or why the surgeon had been so adamant that he did not want to perform the biopsy.
Dare we hope that I might get home and spend some time with the family over Christmas after all, or was it that the cancer had spread too far for the surgeon to carry out the procedure we didn’t know whether to laugh or cry.
The rest of visiting time was a mixture of what ifs and maybes and even when Helen had left I couldn’t settle, I hoped that this evenings medication would calm me down.
I told the drugs trolley nurse when she arrived that I had successfully managed to swallow some food during the day and that maybe I could try and swallow the tablets but she said that it would be best if I continued to have my medication intravenously.
After the nurse had gone I lay in bed with the TV drawn close and continued to watch until the payment card ran out.
Thursday – 22nd December 2005
I had not had a good night, there had been so many thoughts running haywire through my brain that even the diazepam could not relax me.
I had been the first to the washrooms but had no interest in what the breakfast trolley had to offer and was now sat by the bed in concerned anticipation of what the day would bring.
I tried to work out what time the meeting would start and when I might be able to get some answers, evidently it must have been called early because about half nine, quarter to ten one of the team of junior doctors headed towards me from the entrance to the ward.
There was a certain disquiet about him that also made me feel nervous.
He greeted me and then said that he had just come from the case conference and had been asked to tell me that after a careful study of the results of the PET scan no coalescences which would indicate a cancerous growth could be found anywhere.
He continued that it had been concluded from the more detailed information now available that I did not therefore have a cancer growing on my brainstem as first diagnosed but in fact that I had suffered a dissection of the carotid artery and the resultant aneurysm had created pressure on the nerves where they exited the skull which had been the cause of the paralysis I had been suffering.
When I asked him what had caused the problem he replied that it could either be an hereditary thing or might have been a physical thing like a hard sneeze or cough.
Now he said all of this as though I should know what it all meant and seemed genuinely surprised when I looked him in the eye and asked whether this meant that I was still going to die soon or not.
He replied in a fairly perfunctory manner that in his opinion he thought it unlikely.
I wasn’t sure that I was getting the full story, yesterday I was dying and today I’m not, why, what had happened to make things different, how come the miraculous change and anyway why was I having to deal with this junior doctor at this momentous time, where was the consultant.
I felt the anger building inside of me and then I erupted, I managed to hiss at him that I had been told for nearly a month now that there was no hope, that I could be dead by Christmas, my wife and family had been put through hell.
I used my right hand to count the fingers on my left to emphasise the points and continued.
I had to get a burial plot, make a will, organise and deal with my funeral arrangements. People had come from all over the country, in fact the world to say their goodbyes to me, my end of life had been sorted, it was a death to die for and now he had turned up at my bedside and taken it all away from me just like that.
I sat there, my chest heaved with emotional exhaustion and I coughed from the exertion on my larynx, I didn’t know what he had expected, possibly my grateful thanks but certainly not someone ranting against the news he had brought.
He looked a bit like a wide eyed rabbit caught in a cars headlights, he wanted to get away but didn’t know which way to go.
When I had calmed down a bit I asked him what would happen now, he managed to find his voice and said that if I could arrange transport that I could go home today.
Reality and incredulity at the enormity of the situation both hit me at the same time and I turned and buried my face in the pillow on the bed beside me and sobbed.
I felt a hand on my shoulder, when I looked up I saw across the bed the white coat of the junior doctor as he beat a hasty retreat, I turned to see a nurse who said that she would sit with me for a bit.
After a while I reached for my phone, I sat there with it in my hands and jus
t looked at it as I tried to steel myself to make the call.
The nurse said that she would give me some privacy and pulled the curtain around the bed as I dialled Helen’s number.
The phone only rang once and it was answered, the first thing Helen wanted to know was had the consultant been to see me yet, in a crackling whisper I confirmed that someone had, so what had they said she asked. I put on the strongest voice I could and told her that they had said that I wasn’t going to die and that I could come home today if she wanted to pick me up.