The next letter to arrive was for an appointment at Arbroath Infirmary for an Ultra Sound of my liver. This came as a surprise as the surgeon had told us that the MRI that had been done had concentrated on the bowel and he could not see the liver and he needed a CT scan of my liver. Duly on the 13^th of January we went down to Arbroath Infirmary for the ultra sound. That was no problem and the operator did say at the end that my liver was clear. 

The next thing I heard was a phone call from a stoma nurse wanting to arrange an appointment to come and see me as she had received a letter from my surgeon saying that I was going into hospital on the 14^th of February for an ILEOSTOMY.  What on earth is that, an ILEOSTOMY?  Never heard of it say I, there must be some mistake and anyway I had not received a letter telling me about the date of the operation. Poor Sharon, the stoma nurse on the phone, goes away and phones Ninewells hospital and the surgeon’s secretary. Sharon then phones me back to confirm the date and the ILEOSTOMY. So, I go on to the internet and try to find out what on earth that word was. Well you would not have wanted to be around when I read up what that word was. I had come to terms with Colostomy bags and that they needed emptying every couple of days BUT Ileostomy bags that would need emptying SIX TIMES A DAY.  No way. I went into high panic mode, SIX TIMES A DAY, NO NO NO.

The next day I phoned the stoma nurse and got an answering machine. Later that day Eleanor the senior stoma nurse phoned me back and I had a chat with her. I told her what I had found out on the internet and she agreed that what I had discovered was correct.

 Eleanor also sent me a booklet telling me about the procedure which I should have been given at my visit to the surgeon. Then a lot of the misunderstanding would never have happened. Telling someone they were going to get a stoma was not enough information. I did not even know what a stoma was. If I did not have a computer I would never have found out what I now know. Because the surgeons and their assistants are dealing with these every day they seem to think that every one else knows what they are talking about. There should have been a folder full of useful information for us to take home. We were both in a state of shock at the time we were speaking to the surgeon.

I was still not happy and acting on Eleanor’s advice I phoned Mr Lavelle-Jones’s secretary. I was told I would not get the letter about the appointment for the operation till two weeks before hand. His secretary also confirmed that it was an Ileostomy that would be done during the operation. But she agreed to pass on my concerns to the surgeon. Mr Lavelle-Jones phoned me first thing the following morning and we had a chat. I was told that this is the operation he always performs in those situations especially if it is to be hopefully reversed later on. Anyway, after our chat I was feeling a bit better and calmer and over the next few weeks I became resigned to the situation.

In the mean time while waiting for the letter telling us officially the operation date I found the I.A. otherwise known as the Ileostomy and Internal Pouch Support Group. I joined and was sent their quarterly journal and various leaflets covering a lot of my questions. While on their web site I saw they had a forum and went and paid it a visit. I had never been on a forum before but once there I found a lot of useful information. I joined about a week before I had to go in for my operation and introduced myself.

 

At long last the letter arrived saying that they wanted to admit me on the 14^th of February for an operation which would be performed the following day. Added to this letter was a small pamphlet saying that the bays would be mixed sexes. This set me off into yet another panic. Terry and I had gone shopping for nightwear that I would use while in hospital. At the time we could not find any nighties and ended up buying some rather nice looking silky pyjamas. The decision being that because I was only 4ft 10inches tall I could get away with just wearing the tops as they covered my bottom. That would have been fine in a ward of females but not one with males as well. So dash down to the shops again and this time found some rather nice nighties that had just come into the store. So I ended up taking in some pyjamas and some nighties and would decide when the time came what I would wear.

We were asked to phone in on the 14^th at ten o’clock to make sure there was still a bed available. I duly phoned in but was told they were not sure yet and that they would phone me back. I waited and waited, thinking they had forgotten or the message had not been passed on. So come 11.30am I phoned again and was told they still did not know. By midday we thought it is not going to happen so I made some lunch and about five minutes after we had started to eat the phone rings. They still did not have a bed available but I was to come in anyway and wait in the TV room and they would go ahead and admit me there. So lunch was left and we headed out to the car. Everything was already in the car that we needed. We got to the hospital for 1.30pm and were taken to the TV room. We waited and waited. A nurse popped in and said she would be back in a minute. We waited and eventually at 4pm I was taken to a side room. The first thing that happened when I got to the room was that I was presented with the four litres of the revolting Kleen preparation. Now when I had to take it at home I had the whole day to drink it. This time I was expected to drink it by bedtime. Just the thought of it made me feel sick. While I was supposed to be drinking this I had medical students fighting over who should be the ones to admit me.  I was in great demand because I have a heart murmur and they all wanted a chance at hearing it. All the different groups were queuing up outside the door waiting their turn. In amongst this the anaesthetist arrived for a chat and he wanted more information on my heart murmur as well. Then Carol the stoma nurse at the hospital came to draw where she wanted the stoma to sit on my tummy. I was not happy about the position she chose as I wanted it a little higher but she said she knew best. End of discussion. Terry left for home and I was left to try and drink this horrible preparation. I eventually managed to drink three litres and that was hard graft. Every time someone came to visit I was on the toilet.  What an evening it was, I really do not know how I got through it.

 

The next morning I was up a five o’clock and told to shower and put on a hospital gown. My operation was due to start at 8am, first on the list. My bed was made up and just after seven I was wheeled away on my bed to the operating waiting area. I was not there long when I was wheeled into another room and the anaesthetist had me sit on the edge of the bed while he was putting in an epidural. He was still, I thought, doing this when I must have gone under. That is the last I remember of that.

It was late afternoon when I started to come around. I was still in recovery as there were no beds in Intensive Care. It was not till after 6pm that I was wheeled in to Intensive Care. On my way I passed Terry and Gordon sitting waiting for me and had been for ages. They thought I had got lost. I was settled in and my nurse introduced himself to me. He was a senior sister and very nice. I shared him with the patient across from me. Once settled in Terry and Gordon were allowed in. I was hooked up to an epidural drip and a few other drips and needless to say my new companion was there sticking out of my abdomen.

I do not remember very much of the rest of the night apart from sleeping off and on and the elderly female patient beside me spending the night trying to get out of bed. The poor soul was very confused and she had dementia.

 

Wednesday 16^th February arrived and I was treated to a bed bath (great fun, not) everyone was bustling around and I had another new nurse. I was originally told I would be in the high dependency unit for three days but I did not even manage twenty four hours. In the middle of the afternoon I was wheeled out and into another bay. I know they were very short of beds and another busy surgery day was in progress. But all was fine apart from the fact I was very thirsty and my throat hurt from having the breathing tube down my throat during the operation. I wanted a drink but I was refused one till the doctors came and did their rounds and they said it would be alright. At five o’clock when Terry arrived I was still waiting and the nurse relented enough to give me a square of sponge on a stick that had been dipped in a glass of water to suck on. At long last at eight o’clock the doctors came round and the nurses were given permission to let me have a small drink of water.  The amount came to two small mouthfuls. So I held the water in my mouth for as long as possible before swallowing it. I was only allowed that amount every hour.  But it did not stay down long, within a few minutes I vomited it up. A dreadful experience as it was painful on my forty eight clips that were holding me together. But the nurse came to the rescue and gave me an injection to stop the vomiting which worked very well.

 

Then the worst night of my whole time in hospital arrived. The episode still upsets me very much and looking back on it now I wish I had reported it. But here goes.

The night nurse came on duty, she only had to look after me and the patient across from me called Kathleen. Kathleen only had a few stitches and no stoma and she slept through the whole thing. Luckily for me, as it turned out, the patient beside her was awake and saw what happened.

The nurse did not want to be there, we were informed that she had had a busy day and wanted to be in her bed. Not the attitude for a nurse. Not a pleasant word did she have to say to any of us. She did not even introduce herself.  I asked for my small drink of water that I was allowed each hour and very grudgingly she obliged. The water was not kept by my bed so it had to be requested. I was still not very with it as it was still only about thirty hours since I came down from the theatre so I was drifting in and out of sleep. Also my blood pressure had gone very low and that was proving to be a problem as well. I awoke at eleven o’clock and managed to persuade the nurse to give me my sip of water saying jokingly that I had missed my ten o’clock sip. She snapped at me that she does not wake up patients for drinks of water. I did not expect her to;  I was trying to make a joke. This nurses attitude was totally wrong for any nurse but even more so for one working in intensive care. She could not wait to get away from the bay and go and sit down. That was where she spent most of the night and it was not even within sight of either Kathleen or me. Her duty was to take our pulse and blood pressure every hour and assist us if we needed it. She had nothing else to do.

I awoke again at 2am and asked for a drink. Very grudgingly she brought the jug over to pour some water into my glass. She did not even go and get fresh water, what I got was the warm water that had been put in the jug at eight o’clock. Now it was not that cold at eleven but at two in was awful. But I was not going to say anything. I had slipped down the bed but she had no intentions of hanging around to help me sit up a bit higher to take my sip. She was walking away when I managed to get some water in my mouth but instead of managing to hold it there it ended up going down the wrong way. I started to choke, I could not breath, and I was in agony because the coughing was hurting my stitches. I needed to sit up and I could not because I was so swollen round my middle and I needed help. She turned round as she heard me choking and said that serves you right and walked away. I started to cry I was so sore, I was still coughing and spurting and she totally ignored me. I needed to sit up to cough. I was stuck, lucky for me the patient next to Kathleen was being attended to by her nurse who had just arrived and she told her what she had seen and her nurse came over to me and helped me to sit up and she stayed beside me to comfort me. During all this even though my nurse could see the other nurse comforting me she made no effort what so ever to come over.  But, I could not stop crying and that just upset me more. I had been putting on such a brave face over all those weeks and then that nasty bitch gets under my skin and upsets me. This other nurse was kindness and my nurse totally ignoring what was going on just sat where she was. All that was needed by her when she gave me my water was to make sure it was fresh and to help ease me to sit up to sip it. At the most it would have taken five minutes of her very (to her mind) precious time. I was very low from the operation and my blood pressure had plummeted, I had three different tubes sticking out of me and she was meant to be my nurse.  Any other night I would have sorted it out for myself but not that night.

On the Thursday morning when the day staff came in I was still upset, not crying, just upset. My day nurse was very nice and I told her what had happened. She asked if I wanted to report her but I said no. I did not want my reporting of her to back fire on any of the other nurses. I have to say here that all of the other nurses were very nice. But that was the decision I made then.

 

Half way through Thursday morning I was on the move yet again. I was being sent to ward seven and so I had to have my epidural removed as you can only have that while you are in intensive care. Another thing I thought I was supposed to be on for four days. So I had to say goodbye to my nurse and off we went to ward seven with me being pushed in my bed. 

I was lucky in that I got a bed next to the window, well when I say I was lucky, it had its good points and its bad points. When the sun shone through you would have thought you were living in a greenhouse, when they opened the windows you were in the draft. I still preferred it to being in the middle. Also the view was lovely I looked over the River Tay and to Fife on the other side. There were four beds each side. On my side, at the other end was the only male patient, the rest of us were female. There was no longer one nurse to two patients but several nurses (four I think) looking after three bays all holding eight beds. My new nurse was very nice. I had a new drip to replace the epidural for pain management, this was morphine and you had to administer this one yourself when you were in pain by pressing a button. This day was a very ill day for me. I could not stay awake and later I was told by Terry and Gordon that I was grey.  Terry spent the evening pressing the button for me as I had not been doing it. I think the morphine had a lot to do with my not being able to stay awake.

Friday morning I was feeling much better and after a wash down I was able to part with the hospital gown and put on my pyjamas. I was still attached to the morphine and the drip and I still had a catheter in but I was feeling reasonably good.  My nurse emptied my bag but I still had not set eyes on my stoma.  I was still dosing off and on and I was given the warning to “use it or lose it” when it came to the morphine. It seems I was not pressing the button often enough.

I had my first visit from Carol my stoma nurse. She showed me some samples of bags and I chose the one I wanted. Carol then proceeded to remove my bag and I had my first sight of the stoma. It was not a pretty sight. This bright red, sore looking, lumpy thing coming through my skin onto my tummy was not a pretty thing to look at. Carol measured my stoma and then cut a hole in the bag and fixed it over my stoma. I just stood there. There would be another visit from Carol a few days later.

 When Terry turned up at visiting time he could not believe the difference from the previous day.

 

Saturday was another bad day. I was not the only one, three of the other ladies were the same, they had had a good day yesterday as I had and they were also having a bad day. That is how it seemed to go. But I was the only one there who had had their bowel removed and a stoma fitted. I had assumed we were all in the same way, but no, they had only had some non cancerous lumps removed and then sewn up again. None of them knew what an Ileostomy was or what a bag was for.

On Sunday the nurse came and took away the morphine. I had not been using it so they took it away. I said if you are going to do that then what about taking out the catheter and removing the drip. Up to this time I had not been eating. I was told that they would ask the surgeon when he did his rounds. This was duly done later in the morning. Freedom. I had nothing left keeping me in bed. Which was a big relief as by this time I had bed sores on my heels? Very sore, bed sores. Now this was caused by the fact that the nurses no longer would lift you up the bed.

 Even though you have just come out of an operation theatre and are not really conscious, you are expected to lean forward and lift yourself to a sitting position. This was extremely difficult for me as I had retained fluid and was very swollen everywhere. I was like an elephant. What you had to do was hold on to the nurses’ arm and pull yourself forward, you then had to put your hands behind you, dig your heels into the bed and lift yourself up on your hands and move backwards. This you kept up till you were in the correct sitting position. All very well but I could not bend forward because I was so swollen also the needle in the back of my hand dug in. I ended up just having my hands at the side of me instead of behind and I also made my hands into a fist so that the needle would not dig in. All this digging in of the heels made mine very sore, I also think the starched sheet did not help.

Anyway, I was now free and one of the nurses helped me to have a shower even though I was sitting on a stool in the shower, I also washed my hair which was in a right mess by now. I felt so much better after that and sat in a chair instead of lying on the bed. The nurse managed to get a foot stool for me as my feet did not reach the ground and I could sit there and speak to Sandra who was in the bed beside me. We had not managed to see each other before as the bedside cabinets and the curtains that went round the beds were in the way.

I also for the first time had a very small meal which consisted of thin soup and some jelly and ice cream.

 

Over the next few days I was shown by one of the nurses how to empty my bag and I became quite expert at that. Carol came back three days after she had fitted the one I was wearing and the plan was she would show me how to measure my stoma and then cut the hole in the flange of the bag and also how to clean my stoma. But those plans flew out the window when on removing the bag Carol saw that the skin around my stoma had become very sore. She went away and came back with a different bag that had a hard flange instead of the soft one I had chosen. I was told I had to wear this one in the future. This news did not go down well with me. To this day I still hate wearing those hard flange bags. I have tried experimenting with others but they leak so I am stuck with this kind. Also seeing that my stoma was still red I decided to name her Rosy Posy.

Once I was up and about I was getting on splendidly, only one further incident happened that was very frightening and I hoped after it happened that it would never happen again.

It occurred the day after I was allowed up. Breakfast had been served and as I had not been given a menu to fill out the previous day I was not able to choose what I wanted. Now, I am not used to eating breakfast, I don’t when I am at home. But in hospital it fills in the time. So I was given rice krispies for my breakfast. One of them must have gone down the wrong way and I began to cough. The pain of my stitches and in my tummy was dreadful and I could not stop coughing, the tears were running down my face and I was very frightened. A nurse came running and pushed a pad into my tummy to press against my stitches and got me to hold it hard against myself. I cannot stress enough how painful that coughing incident was on my tummy and my stoma. I even had to be given a strong pain killer afterwards. I will never eat them again.

On day ten I was due to go home. I had to wait for my clips to be removed and I was also hoping for the results of the biopsy done on my tumour and surrounding area. The removal of the clips was painful and I had to have five paper stitches applied over parts that had not healed. Just after that Carol my stoma nurse came to see me to tell me that the cancer had spread into my lymph nodes and I had what was called a Dukes C. I would need chemotherapy.  I put on my usual brave face while I was being told and when she left I rushed to the phone and called Terry and told him to “ come and get me, the news is bad, the cancer has spread, I need to go home, NOW”

On the 15^th of March I had a breast scan so it has happened really at a good time having been diagnosed with the cancer.

 

The next step was to now wait for an appointment to see the oncologist called Professor Munro and the appointment came through for the 8^th of March at 10am. We arrived and after waiting till 10.45 am we eventually met with a doctor called Clinton Ally. He told us that I would be getting six courses of chemo over a twelve week period. It would start in a few weeks time. He then goes to find Prof. Munro but he was busy with another patient and we were told to leave. I would be phoned by the cancer nurse who would tell me when to come in for my first treatment.

In the mean time I am having a lot of problems with Rosy Posy. The semi liquid coming in to my bag from my stoma was burning my skin and making me very sore. Umpteen different styles of bags with different flanges were being tried to give a tight fit around my stoma and stop the faeces from leaking over my skin.  I have now had to settle for the most (in my opinion) uncomfortable bag that does stop the leaking but the flange is hard and unforgiving to wear. So back to the bag Carol had said I must use. She wins. But I will just have to live with it.

I received a phone call from the cancer nurse about a week later giving me my first appointment. It was not to be till the 11^th of April. This was not as soon as we had expected due to holiday weekends.

 

 

 

 

 

 

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