She was very apologetic but said there was nothing she could do and as she left closing the door on her way out she said that she hoped that I would not be too badly effected.
Frustrated and with no-one else to talk to I found my phone and texted the information to Helen she texted back that she would try and sort something out for me when she came to the hospital tomorrow and sent me all her love with a line of XXXXXs.
I laid on the bed with the light dimmed, a pile of pillows keeping my head nearly upright and in this way the first part of the night didn’t go too badly but as time went by the niggling cough started and became a real problem once again.
Later I needed the loo so being careful that the food pump was unplugged from the electric socket and with the wheeled bag stand in hand I headed to toilet, there was just enough brightness to do all this without switching on the overhead light and on my return I decided to set the chair adjacent to the bed and move the pillows so that I could sleep head forward on the bed as I had done before and having plugged the food pump back into the electric socket and with its gentle whirring noise providing a soothing lullaby I managed to get some relief from the overwhelming tiredness I had felt following the long emotional day.
In the morning the ‘early’ nurse gently woke me and said that she was surprised to find me out of bed and asleep in the chair, she disconnected the empty food bag and opened the curtains, she asked me if I needed any help to get ready for the day ahead, I said thanks but I felt that I could manage.
Before leaving the room she turned and said that she liked my family and friends, I must have raised my eyebrows in a quizzical expression so she went onto explain that yesterday they had pretty much taken over the visitors room and sat around, chatting, reading or doing puzzles and had quietly come and gone so that they did not disturb other patients which had not always been the case in the past, I said that it was nice of her to mention it, she smiled and left.
I sorted my ablutions out and got dressed, a nurse came and took my ‘obs’ and then I sat in the chair and waited, Helen and Jim arrived first followed by Andy and the others.
There were also some new faces today, Helen said that she would go and see the nurse about the atropine patches and disappeared back into the corridor, she returned after a while and with a look of disappointment said that she had spoken to the nurse who had gone off to search for some patches but that there were none to be had so it would have to be sorted on Monday, not the news I had hoped for.
It must have been about lunch time when Alan (P) and his wife Sue arrived, I asked Andy if Helen and I could have a moment alone with them to discuss the funeral arrangements.
When the room had cleared I asked Alan to come close, I stood up from the chair and we embraced in the way that good friends do, I sat back in the chair and he on the edge of the bed, he told me that he was still trying to come to terms with my situation having known me for so long but that he had thought carefully about his telephone conversation with Helen and felt that he would be able to find the strength to sort out the funeral for us, I said how grateful we both were that he as someone who knew me so well would take over this responsibility from Helen, with that I stood up and embraced him once more.
Alan went on to say that rather than rush things today Helen and I should discuss the finer details of the funeral arrangements when we were quietly on our own and let him know the hymns and readings that we would like and any other requests that we might have Helen said that there was one thing she wanted to make sure of and that was that we should eventually be buried together and that to this end she wondered if Alan could locate a double burial plot for us at a graveyard somewhere, the actual geographical location was not important as long as it had some relevance to both our pasts and also it had to be on a hillside, this was essential to her and I had no reason to disagree.
Alan said he would look into the situation regarding the double plot and get back to us as soon as possible, so with these important things discussed Sue asked whether she should let the others back in now and went to find Andy to let him know.
Family and friends arrived at the bedside and departed back to the visitors lounge as conversations ebbed and flowed and then sometime around mid afternoon Andy said that he had received a text from Kate to say that she had landed safety in the UK and was now in a hire car heading towards the hospital, Helen was relieved and said to me that she just hoped that Kate was not too tired to drive safely for the onward journey.
Not long after receiving this news Joyce and Albert [Mother and Father-in-Law] visited for the first time, this was particularly poignant for me because after the deaths of my own parents many years before I had kept in touch with them almost as long distance surrogate parents and made them aware of the progress of my then family with Christmas cards and the like.
The pair of them had also been instrumental in Helen and I getting back together and Albert had told me in the past that he thought of me more as a son than a son-in-law, so these were the two people who I felt in the absence of my own Mum and Dad I needed to say goodbye to.
I could see that it was going to be as hard for them as it was for me and so I asked Andy if we could have some privacy and he again held the visitors in the waiting room while we talked for a good twenty minutes or so, but then afterwards Joyce was unable to cope with the emotion of it all and so they decided to make a move home saying that they would see me again soon.
Helen opened another box of tissues and normal service was resumed, then around 6.00pm, Andy came from the waiting room and told us that Kate had ‘just arrived’ at the hospital and would be with us once the ravages of the journey had been attended to.
However I knew that our Kate did not ‘just arrive’ anywhere, she enters and so it was that after a gruelling 12,000 mile flight from the other side of the world followed by a tiring 150 mile drive straight from the airport to the hospital Kate entered the room resplendent in her perfect make up and beautifully coiffured hair, she swept round the foot of the bed arriving at my bedside and being careful not to get her bag entangled in the NG tube bent forward and kissed me on the forehead, my heart gave up a little smile.
Then the stress of travelling so far and of being in the company of her mum and siblings for the first time in a couple of years, plus actually seeing me laying in the hospital bed tolled on her, she squeezed my hand as tears welled up in her eyes and when she looked across the bed at Helen they over brimmed and small damp patches appeared on the bed cover.
Andy seemed to instinctively understand that this was a family moment and quietly asked others in the room if they wouldn't mind giving us a few moments together and as they left with Andy following he closed the door leaving the five of us together for the first time in a long time.
Kate said how sad she was for me and Mum that this terrible thing was happening while we were still only young, I took hold of Kate and Helen’s hands and asked them in turn to take hold of Jim and Alex’s hands and as we linked up in a circle I asked them in a crackling whisper please to be still while I said a few words to them.
I looked at Kate, Alex and Jim through a veil of tears and told them that yes it was very sad that me and Mum would not grow old together as we had hoped we might but that we were happy to have made the most of the time we had spent together and in watching them grow over the past few years into kind, caring adults with strong loving hearts and that they would now have to hold firm together so that Mum could use their love as a solid foundation to build her future life after I had gone.
With this Helen let go of Jim’s hand and put her arms about my neck and held her forehead to mine and the tears flowed freely all around, then each of the three took my right hand in turn and gave it a strong squeeze.
Following a flurry of tissues, dabbed eyes and blown noses we made ourselves presentable for visitors again but with the evening coming on all those people that were not staying over at the house needed to start getting away back home ready for work
the next day and so there was a veritable procession of small groups of people trying but generally failing to say their goodbyes without making them sound permanent, it was a sad and sometimes difficult end to the day.
People drifted away until there was just Helen and me left, she reached out and again put her arms around my neck with her head on my chest, we held onto each other for the longest time and then with a final kiss she gently patted me on the chest and left.
Now that I was on my own a melancholy came over me but just as I felt it was about to overwhelm me there was a ping! from the direction of the over bed table, I pulled it towards me and saw that there was a text message notification, I opened it and saw that it was from my niece saying that she was thinking of me, then ping! again, it was a text from Helen and then ping! ping! ping! texts started arriving in quick succession letting me know that some people had safe journeys home and others sending their love and as quick as it had come the melancholy was lifted by the outpouring of love in these messages.
Knowing that there would be no atropine patches again tonight I set the chair with pillows in place on the bed and after the nurse had been I settled down with a much happier frame of mind.
Monday 5th December 2005
I was awake early today and still sat in the chair from the night before, the curtains were closed and in the half light my mind replayed the events of the weekend and the roller coaster of emotion that had enveloped me, it came to me in this moment that whatever uplift I had felt from the visits it did nothing to lessen the awfulness of my predicament, Christmas was now only three weeks away and I had already used up one of the weeks of life that had been on offer to me since the diagnosis, I could almost physically feel my life draining away.
The ‘early’ nurse did not find me very communicative and I was still sat in the chair when Helen and Kate arrived, I just couldn’t be bothered about washing and shaving, but they knew that I was due to have the MIR scan late morning so after some gentle persuading by Helen I disconnected myself from my attachments and headed for the shower and Kate went of to get herself a cup of coffee.
By the time she returned I had just about managed to resemble someone prepared for the day ahead, Kate said that Mum had told her about my ice swallowing which she thought was very clever of me and could I show her how I did it, I think that she was trying to take my mind off of things, anyway with Helen’s assistance a towel from the bathroom was tied around my neck forming a bib, I then searched the water jug to find some small pieces of ice and then to their sometimes difficult to control amusement I proceeded to go through the awkward but rewarding process of getting small chunks of ice down my throat.
To be able to again successfully perform my little trick bucked me up slightly which was further boosted when Kate suggested that rather than just plain ice that possibly Mum could freeze some fruit juice so that I could have flavoured ice which might be nicer, I agreed that this would indeed be more pleasant and then there followed a discussion on which fruit juice would be best.
I said that I thought that orange juice would not be a good idea as it tended to be quite thick and sometime had bits in it which might catch in my throat so it was going to have to be a choice of the berry juices and in the end it was agreed that cranberry juice would be the best one to try as it was a very clear liquid, Kate and Helen smiled and said that this would be something to look forward to tomorrow but somehow felt a bit odd to me that there was anything to look forward to in my present situation.
It was then that the duty doctor came into the room on his daily rounds, he asked if I was feeling tired after the weekend as he had heard that I had received quite a few visitors, I said that it had been pretty exhausting particularly as I had not been able to sleep very well because of the lack of atropine patches and I had little choice but to sleep in the chair next to the bed to overcome my problem cough, he said that he would look into it and that if atropine patches were not available then he would prescribe injections instead.
He then checked my ‘obs’ chart and asked the usual questions about bowel movements etc. and once satisfied that things were as well as could be expected he reminded us that the porter would be along shortly to take me for the MIR scan and then bid us good morning and left.
Helen and Kate said that they would need to get some shopping in after the house full of visitors at the weekend so once the porter came they would pop off to the local supermarket and come back to see me early evening and bring Jim with them.
Not many minutes later a porter arrived with a wheel chair so after saying that I would rather be going to the supermarket with them than to have a scan I waved cheerio as they left the room.
Now wrapped in a blanket with my notes held on my lap I was whisked away through the labyrinth of hospital corridors to where the MIR scanner was situated and once again was left parked adjacent to the wall waiting for the radiologist to come and get me.
A lady introduced herself and asked me if I could walk into the room or did I need the wheelchair, I said I felt able to walk so she took the notes from me and with me holding onto her arm I shuffled into the scanner room.
This was generally a repeat of the previous CT scanner experience except that this time I was managing to control my swallowing more successfully and there was less coughing so the whole episode was over in one take albeit it had taken slightly longer than the last time, then once more safely deposited in the wheelchair in my parallel parking spot next to the wall I waited for the porter to arrive, there is a lot of waiting to be done in hospital.
When I got back to the room Andy was waiting and after I was disgorged from the wheelchair back into the bedside chair and fully reconnected I gave him a brief resume of how the MIR scan had gone and he wished me luck with the results, he told me that he had watched Matt and his dad going through the companies files on the computer at home and that they had taken copies of what was needed for Matt to continue with the business in the short term.
I thanked Andy for his assistance on this matter and again for all of his efforts over the weekend, he said that it was the least he could do under the circumstances, he continued that he would have to leave soon and get back home for work the next day but that he would keep in daily touch with both Helen and me and return next Friday with the family.
After Andy had left I spent the afternoon laid on the bed watching the TV until Kate, Helen and Jim arrived, they of course also wanted to know how the MIR scan had gone, I told them that I didn’t know the results as yet but that things had gone better than the previous CT scan and hopefully the consultant would get more information this time.
Helen deposited some clean clothes in the cupboard and Kate said that they had filled an ice cube bag with cranberry juice which was now in the freezer, Jim however was fairly subdued, I knew that because of the situation he was struggling with the preparation for his exams and there wasn’t much I could give him in the way of encouragement or to say that things would get any better, I just hoped that he would manage to get by as he still had a future that he needed to be prepared for.
After an hour or so of chatting I was starting to feel the full tiring effects of the past couple of days and so it was with reluctance that I said to them that I needed to have a rest and they agreed to leave so that I could get my head down.
The nurse arrived some time later and had to wake me to give me my penicillin, diazepam and now also my atropine injections, I told her that I couldn’t help but find it funny that she was having to wake me up to give me a sleeping potion, she smiled and explained that both of the penicillin and diazepam injections were intravenous and would be given through the cannula on the back of my hand however the atropine injection was to be given subcutaneously, I had to ask what his meant, she said that the injection just went into the skin and not a vein and with that she pinched a small area of skin on my right shoulder and inserted the needle just under the skin, it was a little sore as the fluid was injected but nothing more than that.
I settled down again on the bed, the nurse turned the over bed light off and I started to drift away, my last waking thought was that I hoped that dieing would be this comfortable.
Tuesday 6th December 2005
I woke refreshed this morning rather than just coming to as I had done following some of the recent disturbed nights, the atropine and the diazepam had done their jobs well, I can’t say that I jumped out of bed and strode forth but I did feel a slight spring in my step as I disconnected the empty feed bag and headed to the shower, I even had a go at cleaning my teeth with a toothbrush, well at least the ones you could see when I smiled.
I was sat in the chair and quite chipper when Helen arrived around 10.00am so it was with some concern that I could see that she had been crying, I asked her what had happened but she shrugged it off so I assumed that the situation must have been bearing down on her more heavily this morning.
Helen kissed me on the forehead and after taking off her coat she reached into her bag and produced quite a handful of unopened envelopes, she said that she had removed all of the dross from the post that she could but that these letters were either addressed to me personally or to the business and she wanted me to tell her what to do with the content in case some money had to be paid or things needed to be sent to Matt for him to deal with.
A DEATH TO DIE FOR Page 8