A DEATH TO DIE FOR (9 page)

 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.

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.

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.

I knew she was worried that something might not get done and I thought that it might be this that had made her cry so I went through them all with her one by one, I felt that at least I could put her mind at rest about this if nothing much else.

Some of the envelopes contained business letters and others held cards or letters written by friends and family who really didn’t believe what was happening to me and who couldn’t quite find the words to express their feelings of helplessness, I read them all intently, some emotionally and then Helen helped me to place the cards on the cupboard, I then explained to her the one or two items that needed to be dealt with and she made notes on her pad which she then deposited back in the bag.

Kate arrived just before lunchtime and after a while said that she thought that she should take Mum to the hospital restaurant to get something to eat because she felt that Mum had not been eating properly, Helen protested that she wasn’t really hungry and didn’t want to leave me on my own but I said that she needed to keep her strength up and that she should go with Kate.

When they returned Helen had with her one of her bag for life bags which Kate had brought in, from it she produced a small thermos flask and while undoing the top she told me that before visiting Kate had taken some of the cranberry juice ice cubes and crushed them with a rolling pin in a plastic bag.

She showed me the crushed pink ice in the flask but before letting me at it she proceeded to take a clean tea towel from the same bag and tied it around my neck to save my clothes and the previously commandeered bathroom towels from any spillages.

Next Helen pulled up a small chair and sat in front of me, she poured some of the crushed cranberry ice into the flask’s cup and with a spoon that also appeared from the bottomless bag, this girl thinks of everything I thought, she carefully put a small piece into my mouth, how glorious the taste was but I tried to swallow it too quickly and immediately convulsed into a coughing fit, score one to the tea towel.

The second attempt was more successful and so we continued the process until most of the manageable size pieces of cranberry ice had been consumed, I was elated because now I had taste, swallow and extra fluid, another small victory which put a smile on my face and set me up for the rest of the day.

We had just finished tidying things up when the consultant knocked on the door and entered, I was sat in the chair and Helen and Kate moved away slightly so that he could perch on the edge of the bed, he asked how I was feeling today, I said not too bad and explained about eating the cranberry ice which he thought was a very good idea and that he was impressed at how Helen and Kate had organised it.

He then gave a little cough and looked at Helen, the tone of his voice altered and consequently the mood in the room changed almost instantly and I knew that the conversation was about to move in a more serious direction, he said that he had seen the results of the MIR scan which seemed to show that the cancer had got bigger during the last seven days since the previous CT scan and that it looked very much as though it was eating into the bone of the skull itself.

I’m sure that my mouth must have dropped open and my eyes widen at this news because he leaned forward and placed his hand on my right arm.

After a short pause he went onto say that where the nerves pass through the skull there is a hole which would normally be about the diameter of an ordinary pencil, however the MIR images had shown that this hole is now nearly as big round as his finger which he demonstrated by holding the little finger of his right hand between the thumb and forefinger of his left hand.

I had a sudden surge of heat pass through me much like when you are angry or embarrassed but I was neither, I just felt numb at this devastating development, I thought how can this be, surely I would feel the pain of this.

Helen let out a stifled cry, she stooped down in front of me almost at a kneel and held onto both of my hands, she squeezed them tightly and then standing up again she faced the consultant and asked him if he was sure, he replied that from the scan images there was little doubt that things were getting worse which bore out their previous diagnosis, he said that he was sorry that he could not hold out any better hope.

Helens shoulders dropped noticeably and Kate moved close to support her, the consultant asked if there was anything he could do or get for us, I heard Kate say nothing at the moment thanks and so he left closing the door behind him on the way out.

Kate remained standing as Helen moved to sit on the bed next to the chair, she gently pulled my shoulders towards her and cradled my head in her arms and the three of us stayed in this unmoving tableau for what seemed quite a while.

I was the first to break the moment by saying that I needed a tissue to dry my eyes and blow my nose, Kate said that she would get it and disappeared into the shower room, with her back to me I heard her clear her throat and pull some tissues for herself and when she came back into the room I could see that her eyes were red from crying.

I took the tissues from her and gave a hearty blow and in a croaking whisper told them that this was nothing that we hadn’t expected and that we must make the most of the time that we had left and with that I stood up and we gathered together in a huddle.

The afternoon moved by slowly, Kate eventually said that she needed to go into the town to pick some up some bits which she had run out of and after saying that she would see me later she left waving to us through the corridor window.

When Helen and I were on our own she said that as there was nothing else to be done and my care could be carried out by the district nurse or possibly even a Macmillan nurse that she wanted me to come home where she could look after me for the rest of the time we had.

I had already given this some serious thought during one of my quiet moments alone and said to her that I didn’t want to go home to die and leave her with memories that might cloud her judgement about moving on after I had gone, it was a certainty that she and Jim would not have the finances to continue living at the house and I said that it wouldn’t be fair on her emotionally to have to sell but feel that she couldn’t.

Helen tried to protest but I remained firm and said that the best thing would be to arrange for the hospice coordinator to come and see us to discuss what options there were, she sadly and reluctantly agreed to ask the duty doctor to set up a visit.

By now Kate had returned with her shopping and it was time for them to get home to prepare the meal, we said goodbye and they left.

I saw the consultant pass the corridor window, he came in and sat on the edge of the bed next to me in the chair, he said that he couldn’t leave today without seeing how I was coping with the latest news, I said that it had really brought home the finality of the situation to all of us.

His next comment surprised me, he said that he would like to try one more thing, he said that he would have to get it passed by the relevant people at Birmingham hospital but he wanted me to have a PET scan (
Positron Emission Tomography
) to show exactly what the cancer was doing, I asked him what good would it do, he replied that he couldn’t know and it was probable that it would only confirm all of the previous tests but that the results might benefit others in the future.

This felt like one final straw was being offered to me so I took hold of his wrist and whispered that I didn’t want him to give up on me and that if he could manage to sort out this cancer I would work hard to sort out the paralysis.

His expression warmed slightly and he said he would do the best he could but that it would be unlikely that it would make any difference to my outcome.

Once he had left I texted Helen to say that they wanted me to go to Birmingham hospital, ping! a reply text in capitals blared NOW! I texted back and said no, I’ll tell you about it later.

Helen, Kate and Jim arrived about 6.30pm, she could see that my demeanour was improved from earlier in the day, they gathered around me in the chair and Helen wanted to know what had happened after they had left and I explained as best I could what the consultant had said to me which was that although it didn’t mean that anything would change it felt that if they could find out more detailed information about the cancer then they might just be able to slow it down with treatment of some kind and at least give us a few more weeks.

Helen put her hand on my shoulder and smiled and just then Alex and Ian arrived and were told the new information, everyone felt a little bit happier and wanted to know when I would be going to Birmingham and for how long but all I could say was that I wouldn’t know until the consultant came back to me about it but that I hoped that whatever happened  I could still have this room back when I returned.

Later after visiting time and the nurse had administered the due contents of the drugs trolley I tried to settle down to sleep but my mind was buzzing with how things had changed in the course of the day.