A DEATH TO DIE FOR (4 page)

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.

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.

Some time went by, I found out later that when the consultant found Helen he informed her of the diagnosis and she had understandably dissolved into floods of tears but thankfully she had several colleagues on shift that afternoon who rallied around to support her.

All the time the nurse stood by the bed but it didn’t really register with me what she was doing or anything she said, my eyes could not focus as my vision was a blur because of the tears and I had gone deep inside my self as I was trying to make sense of all this madness.

I had always said to people that my view on life was pretty simple really and that the only certainties were death and the tax man and so you must live life to the full until you die. I had had a good life, I always had a roof over my head and good food on the table, I had never had to go to war (
although I got pretty close in June 1967
) and had always had someone who loved me so when the great reaper came to call he wouldn’t get a complaint from me.

But now here it was, the end was less than three months away and my head was full of questions, what was it going to be like, was it going to be painful, would I be aware of it coming would there be a bright shining light, would I see my son and parents again how would I get Helen through it, had I left her with the financial where withal to carry on, how would it effect Jim’s ‘A’ levels would he be able to get a dispensation because his Dad had died…… would I be able to die with dignity or be a snivelling wreck, my mind just wouldn’t stop whirring I could almost feel the cogs going round.

And then through the blur I saw movement coming towards me, it was Helen in her blue uniform, as she got closer my eyes managed to focus on her, I could see that she had been crying as there were tear stains on her tunic top, she had a ball of tissues pressed against her upper lip with her right hand and her eyes were brim full of crystal clear liquid, as she reached for me and as she leaned forward the pent up tears escaped her lower eyelids and fell on the bed cover just in front of me.

She could hardly speak, but in a quivering voice she managed to say ‘My poor darling’ and then she placed her arm around my shoulder and drew herself to me so that our foreheads were touching the tears came freely from both of us, I reached out with my good arm and tried to pull her close, to offer some reassurance but there was none to be had and so we stayed like this, lost in each other while the consultant and the nurse looked on.

After a short while we pulled apart, Helen dabbed at her eyes with the tissues and then reached out and wiped my cheeks which were wet from my own tears, the consultant came round and stood at the side of us, he said in a quiet voice that there was little that he could say that would help at this time but if we had any questions that he would try to answer them, we said at the moment we just wanted to be together on our own, so he said that he would leave us for a while with the curtains closed.

Helen and I just looked at each other for a moment and then I asked her what she had been told, she explained what the consultant had said but to my bewilderment he had told her that it was unlikely that I would make it to Christmas, I could hardly believe that in a short space of time someone had just wiped two months off of the rest of my already much reduced lifespan.

Helen moved closer, she put her arms around me under my arms and with my right arm I moved my paralysed left arm onto her shoulder and then put my right arm around her shoulders and grabbed my left hand so that we could hold each other tightly, Helen’s head was on my chest just under my chin and I could feel her sobbing, my eyes filled with tears while all the time I was doing little coughs trying to keep my throat clear and desperate not to have a coughing fit that would disturb the moment.

I do not know how much time had passed but eventually the consultant along with a nurse reappeared inside the curtains and said that I would be moved from the admissions ward to a medical ward along the corridor.

We reluctantly released our embrace and Helen wiped her eyes again and then got off the bed, she collected all of my belongings from the bedside cupboard while the nurse assisted me out of the bed, she helped me to put on the hospital slippers and a gown and asked me if I felt that I could walk or did I need a wheelchair.

I was stood, balanced and although a little fuzzy I could still put one foot in front of the other and so I said that I would walk, although it proved to be more of a shuffle and so this little knot of people consisting of me, Helen, the consultant and the nurse moved slowly the short distance along the corridor to the medical ward.

It was about 4.30pm when I was shown to my new bed at the end of the ward by the window, well a not so new bed actually, it was a sad old bed which seemed to droop down at one corner and not at all like the other beds I had passed, I have to say it looked like I felt -  old and broken.

The nurse sat me on the edge of the bed and the consultant asked her to fetch an ‘obs’ station to check my blood pressure and said that I would be connected to a saline drip to stop me dehydrating, while he told me this Helen busied herself putting my bits and pieces in the bedside cupboard and then came round and sat on the bed beside me, she reached out and gently took hold of my hand and although she bravely tried to smile and comfort me her tear filled eyes showed the turmoil she was going through.

Helen said that as much as she did not want to leave she needed to go as Jim would be getting home from college and she would have to sit down and explain to him what the consultant had told her, she handed me my mobile phone so that I could phone her if I needed to call her back to the hospital urgently but otherwise she would be back later with Jim and after a tearful goodbye she walked out of the ward.

This was the first of many times that I wondered if I would ever see her again.

Because I was still prone to coughing fits, when the nurse came to connect the saline drip to my cannula we agreed that I should keep my gown on so that I could sit out in the chair next to the bed and once she had finished I was able to fully take in my surroundings for the first time.

I remember it as a six bed ward, in the bed opposite was a old emaciated poorly man who seemed unaware of where he was and who kept calling out in a strained and pitiful way, in the bed next to me the occupant was on his side with his back to me and the bedcovers pulled high so that only a tuft of hair was visible on the pillow. Just then at the far end of the room a nurse entered the ward responding to an alarm from the bed occupant nearest the door, I can’t fully recall who occupied the other bed.

As I watched the goings on I was approached by a nurse who said that she had been asked to  carry out a swallow test on me, she carried a small tray with a spoon and a small jar of jam on it, she explained that I had to show her if I could manage to swallow. The nurse took the lid off of the jar and took a small spoonful of jam, she asked me to open my mouth and said that I should suck the jam off of the spoon and try to swallow it.

You would think that having not eaten anything for so long that I would been ravenous for anything that passed my lips, however whether my condition had altered my taste buds or not I don’t know but the jam tasted horrible and it seemingly took forever to get it to slide down my throat but eventually she was able to record in my notes that a successful swallow had occurred.

I felt that I just wanted close myself off from everything around me, so I stood up took a deep breath and remembering to wheel the drip stand around with me I drew the curtains and then sat on the sagging corner of the bed, I knew that Helen would be letting the family know what was happening but I also knew that she was going to need a lot of support over the coming days and weeks.

Now for the first time since the shock of the news of my impending death I was on my own, the surreality of my situation started to bear down on me, there were the noises of the ward going on outside my little curtain enclosure, people talking and moving about, the clatter of trolleys and a fairly regular plaintive cry from the old chap opposite, occasionally nurses would trespass into my private world to ask how I was getting on but I did not feel able to respond.

Because it was almost impossible for me to make myself heard over a telephone I sent a text to my younger brother Andy, I don’t do predictive text so I input the following in full, “Dear Andy, I’m in hospital, things are worse than first thought, please come urgently. Geoff” within a matter of seconds I got a reply phone call from him wanting to know what was going on, in a rasping voice and in between coughs I managed to give him the gist of what had happened and that I needed to see him, he said that he would be leaving work soon and would go home to let [
his wife
] Sue know what was happening and then come straight from Fareham to the hospital, he reckoned it would take him about two and a half hours.