Up Shit Creek

Added” 12 June 2006

The hearing with Nurse Ratchett - and witness!!!

The lowest point I’ve reached in this whole experience of having cancer came about a fortnight after having the operation, around the time when had everything gone to plan I might have been expected to be discharged. The usual process apparently being having a week to recover from the surgery and then a week in hospital learning how to manage the ileostomy bag. But my ileostomy had proved hard to manage, instead of lasting two days as it should have done before it needed replacing it rarely stayed on for more than 5 hours and frequently leaked even two hours after it had been affixed by one of the marvellous team of stoma nurses. This had led to my skin being badly burned by the acidity of the poo that had spread over it so regularly. The area around the stoma looked like the worst case of nappy rash I’d ever seen and twice as painful. I began to dread the changing of the bags and the pain that I felt even in spite the large doses of opiate based drugs I was taking. There was no way I could be sent home in this state.

Shortly after a particularly excruciating bag change I was visited by Mr S the consultant & the ward sister Nurse Ratchett. Mr S expressed his concern about how long I’d been in hospital, the fears he had about my getting an embolism or an infection if I remained there any longer and reminded me of the fact that, “I have seen 86 year old ladies who have been able to manage ileostomy bags better than you can.” (I have since wondered where I might have got one of those elderly ladies to fix the bag for me) I tried to explain that even the stoma nurses weren’t able to make a bag stay on my body for more than a few hours, that I wanted to go home but it was obvious he wasn’t listening. I felt that in his eyes I was just an awkward patient refusing to cope. I also got a distinct (if probably rather paranoid) feeling that maybe “they” thought I was sabotaging the bags myself in order to stay in hospital longer or draw attention to myself. And he did not examine his handiwork.

After he left Nurse Ratchett started to tell me about a patient they’d had who had been similarly consumed by the horror of wearing a bag & had refused at first to have anything to do with it but who was now living a full and normal life in spite of her initial, horrified reaction. She offered to get this woman in to talk to me and help me handle the bag. Here it was again, she was also presuming that the bags weren’t working because I couldn’t handle them, rather than I couldn’t handle it because the bags themselves were causing problems. On reflection too neither of these people was taking into account the pain of my badly excoriated skin. I was the classic bed blocker probably interfering with some target or other they had to meet. Why could no one see me? Why were they making all these presumptions? I have rarely felt so vulnerable and out of control of my life.

After she left I drew the curtains around my bed and wept like I have never wept before in my life. I was on self medication, the drugs I was taking were in my medicine cabinet and I calculated how many tramadol it might take to finish myself off. I could not and would not live like this. However, I realised that hospital is not the most suitable place to kill oneself in, I’d be saved and probably give myself liver damage in the process. I was told by the patient in the next bed that I carried on crying in my sleep right throughout the night.

When Chris arrived for visiting, we decided to ask to see Nurse Ratchett to discuss how I felt and to explain that the problem didn’t lie in me but in the bags not working. She immediately said she wanted this meeting witnessed and brought in a very embarrassed looking staff nurse. I began to express my concerns about how I felt I was being regarded she began to write them down not engaging in eye contact with me and interrupting my flow as she wrote and repeated what I had just said. I had to insist quite forcefully that she didn’t do the writing but looked at me as we spoke. I felt like I was back in the classroom reproving a kid for his bad manners! The embarrassed staff nurse took over the writing of notes. The meeting lasted over an hour and a half, with the poor nurse having to write down everything which was said. This was more like a court hearing than a caring health professional listening to a distressed patient. Chris and I asked endless questions, trying to make sense of things. At no time, did Nurse Ratchett concede that the problem was anything but my own making.

I can’t now remember much about the exact content of our discussion but I don’t think what I said penetrated very far into her consciousness as next day the previous patient who had rejected having a bag so forcefully appeared to tell me about her life, show me how to put the bag on (I was actually getting to be an expert on the various ostomy products and adhesives) & to tell me about how she knew exactly how I was feeling. A lovely person who had overcome great difficulties, but yet again her appearance proved that Nurse Ratchett hadn’t listened and didn’t know what was really going on.

The fact that I had asked for and got a meeting with Nurse Ratchett spread quickly round the other nursing staff who made the occasional, surreptitious and admiring remark about it to me from time to time during the following fortnight of my stay. In fact when on my release date several of them came to say goodbye and either shaking my hand or kissing me whispered, “And well done for standing up to Ratchett. She’s been needing that.”

Added: 11th June 2006

Curtains at Calderdale

At Calderdale Hospital, the beds were much closer together than at other hospitals. In spite of all our requests to the Sister (”Nurse Ratchett”) and the “Floor Bed Manager”, there was no way they were going to let Elaine have a room to herself. So we would pull the curtains around the bed at visiting time, just to try and recreate a little space of our own.

But this seemed to be unheard of at Calderdale. Nurse Ratchett plainly didn’t like it. “I can’t see the other patients,” she would say. One day her deputy, the staff nurse, arrived to tell us we couldn’t have the curtains pulled. The ward was full of visitors, and I could tell Elaine was going to let her have it. I intervened, and said, “Excuse me, could I have a word with you outside in the corridor.” I didn’t want the staff nurse to be shown up in front of a crowded ward. I explained that I thought having the curtains round was important to Elaine. That a little privacy could only help Elaine’s road to recovery. I was firm but polite.

The following day, the Nurse Ratchett remonstrated with Elaine. The staff nurse had, apparently phoned her at home in tears, saying that I had been rude and abusive. Fortunately, Elaine knows me well enough to know that this wouldn’t be true. In fact, Elaine’s daughter and boyfriend were there at the time, and actually complimented me on how I handled the situation. We puzzled over it for some time. We came to the conclusion that at Calderdale Hospital they are just not used to people questioning their orders and see anyone doing so as disruptive and rude.

Elaine is a very sociable person, and would always like to help other patients on the ward, even when she had not long come round from her own operation. She can’t help herself. When I first visited I could see her looking around at all the other patients. It was very clear she really needed some privacy. She needed to be able to cut off, and concentrate on her own recovery. And I too wanted the little privacy that would allow us to talk intimately and hold hands without feeling we were being watched. I had come to visit Elaine, not all the others who happened to be in the ward.

This was a battle we had to play out again and again for the month Elaine was in Calderdale Hospital. Really, it wasn’t about the curtains; it was really about power and control.

When Elaine went to Leeds, everything was far more relaxed. After our experience at Calderdale, we hesitated about pulling the curtains round. Rather than having to do battle once again, we decided to ask one of the nurses. “Is it OK if we pull the curtains round during visits?” The nurse looked at us as if she couldn’t believe she was really being asked this. “Of course it is. Why wouldn’t it be? Pull them round whenever you want.”

7th June 2006: Tonight quite suddenly I remembered something I’d suppressed I think. It was when I was first getting mobile and learning how to manage my ileostomy bag. I hadn’t yet fitted it myself so I felt perfectly secure about it because I’d been told how easy they were, it looked as if it should be, I’d emptied it, I didn’t smell etc. I’d just managed to wash my hair for the first time in 10 days, I’d changed into a particularly lovely white cotton nightdress I’d treated myself to and the visiting buzzer went.

I went to get into the bed when quite suddenly shit just poured from around the bag, over the nightdress, all down my legs and into a big puddle on the floor at my feet as I could hear the visitors arriving. I had the curtains around my bed and a nurse was to hand.

I was so upset I just couldn’t speak, pointed to all this liquid poo just pouring from me (don’t know where it had come from as I hadn’t eaten in ten days) and began to cry. “Oh pull yourself together Elaine, it’s nothing.” And that was my first introduction to how many (but by no means all) of the staff dealt with my problems with the bag.

As it turned out I had a definite medical problem with the stoma but no one acknowledged it at the time and many including the Sister and the consultant made me feel that it was my fault and that I was either squeamish or weak in some way. I should have complained about that particular incident but of course when you’re dependent on people that isn’t at all easy and afterwards I was just so glad to be out and with a very early and apparently successful reversal operation with chemo to follow and then later a liver resection that I didn’t bother.

3rd June 2006: One night whilst awaiting my reversal operation I had by this time got quite mobile. I was so fed up about the screaming old ladies (I can stay awake through sleeping pills BTW, I am very drug resistant) that I went into one of the social areas on the ward corridors where it was much quieter and where there was a Lazy Boy reclining chair. I took a pillow and a cover and slept there for the night - in the corridor. Best night’s sleep I had there.

Next morning She Who Thought She Must Be Obeyed came on duty and noticed me just waking up. And guess what? The next evening that chair, the only one that could be slept upon had disappeared.