Even more episodes

Because my last post was my 100th post I haven't really updated you on what's happened the last couple of days.

Monday I went down to X-ray to have the Barium follow through test at 9am. This involved me drinking 2 litres of white, chalky liquid containing barium, which actually weren't that bad ( it's the contrast drink for the CT scan that's really nasty). 

Fifteen minutes after drinking it I went in to have an X-ray to see how far the liquid had travelled. It hadnt got far so I was sent back out to wait for another 15 minutes and then had another X-ray. This pattern continued for two and a half hours until the barium had completely passed through my system. Thank goodness I took a book with me!

After the test they brought me back to the ward, just in time for lunch, which was handy as I had needed to be nil by mouth for the barium test and I was a tad peckish. 

On the subject of meals and eating, I am pleased to report that my tolerance to food is increasing. I had an egg sandwich for the first time and although I felt bloated from the bread I didn't experience any pain. The same can't be said for broccoli. I had the tiniest piece with my mash and gravy and I really chopped it up and mashed it in but my tummy didn't like it and I was in pain for a good few hours afterwards. Still trial and error but I feel like I am making progress. 

Monday afternoon my friend came to visit. She normally comes on Tuesdays but had to swop cause it was parents evening this week on Tuesday. She had text me to make sure I was going to be awake after me being completely zonked out last Monday when she came. 

We went down to Costa to get me off the ward but when I got down there I realised I couldn't drink anything other than water. It didn't matter to me though as it was the change of scenery that counted. As usual we sat and chatted, hardly pausing for breath, until I started to get some pain in my rectum. I thought it would be best to head up to the ward and get some pain relief so we started walking back. 

Before we even got halfway to the lifts the pain was so severe that I was pausing for breath every few steps, like a woman contracting in labour. Knowing that I couldn't possibly stand waiting for the lifts and then have them stop at every floor up to level 9, we took the glass lift straight to level 10. This is the lift for the private patients and you know you're on the private wing the minute you step out of it as there is carpet on the floor!

We cut across the waiting area (no hard chairs and dog eared magazines here, instead there are plush leather sofas and mood lighting) and down a flight of stairs to level 9. I'm panting and puffing with every step as the pain in my rectum is growing, ready to mount a new attack. 

The attack lasted nearly 2 hours. I used morphine based pain relief, the gas and air and my hot water bottle to try and relieve the pain, but nothing worked. My friend was with me through it all, holding my hand. I'm sure it was as hard for her to witness as it was for me to go through it. 

Dr 18 came at the start of the episode while I was rocking on all fours, crying. "You need to lie on your side so I can examine you" he said. Unable to move due to the pain he gently but assertively pushed me onto the bed so that I was lying on my side able for him to examine me. He said that my rectal sphincters were in complete spasm again like the time before when he had examined me during an 'episode'. 

In the end, my body exhausted, I must have fallen asleep because when I woke up it was dark. Again, having been in a deep sleep I'd had an accident. I really am frustrated that my body seems to be letting me down when initially after the operation it seemed to be doing so well. Maybe I'm destined to wear the Tena pads for some time yet!

I woke on Tuesday morning after having a decent nights sleep. I had woken at 4am needing pain relief but had managed to get back to sleep with no problems, something I haven't done for a while. 

I thought that I might try a few beans at breakfast time but obviously the lady in the kitchen was keen to dish out more than a few!

All the nurses were in a staff meeting which meant that the ward was left in the hands of a student nurse for nearly an hour. We were also informed that there would be a mattress inspection that morning so all the beds were stripped early. Apparently the NHS rents their mattresses so once or twice a year the company that owns them come to inspect them and check they're in good repair. 

After they'd been inspected we helped the Health Care Assistants make the beds in our bay as they had so many to do and plenty of patients sitting waiting and wanting to get back into bed. 

After doing that I noticed that the pain in my rectum was starting. Sometimes I get spasms and pain that lasts a minute or two and then passes, other times it's these lengthy attacks. I know straight away which it is going to be and my heart sank when I realised that I would be experiencing the latter. I asked for pain relief straight away, hoping to stave it off before it really started but it wasn't to be.  

Just as it was getting bad, Dr 18 came into the bay with a locum doctor doing a handover of each patient. When they reached my bed he told her that they would come back to me. Why was he handing over? I thought. He still had a few weeks before he was due to rotate. 

I didn't have much time to think about it though as the pain intensified quickly and I was back on the gas and air. The pain was so severe that I was sweating and screaming out. I'm sure the whole ward could hear me! I shouted for Dr 18 to come and give me some pain relief, but the Charge Nurse came instead. 

"He's gone" he told me. "What do you mean he's gone?" I said. The Charge Nurse told me that they had brought forward his rotation early and that he'd left the ward already after handing over to the locum doctor. I was gutted as 18 was one of the people that I felt I had connected with and we had a bit of banter which made things more bearable. I couldn't believe that he was gone, just like that. 

But I couldn't dwell on it as I was in agony and the Charge Nurse said he would ask Dr 8 to come and see me. When he arrived I was in a right state and he sat on the bed with me, apologising that there was no more pain relief he could give me. He mopped my brow and gently wiped away my tears. 

"I can't do this any more" I told him. "It's too bad. You have to find out what's wrong. I can't take much more". He gave me his word that he would do his best to find out what was causing this and get me home to my children. I believed him as he is one of the most sincere, kindest doctors I have ever met. 

One of the pain nurses came to see me during the attack. She didn't introduce herself but simply swanned in and declared that I had had enough of the gas and air and she was taking it away. And she did. I shouted for it to be returned but nobody listened and I was left with just my hot water bottle for comfort. "You wouldn't treat a dog like this" I shouted to no one in particular but to anyone who happened to hear it. 

After the attack I didn't fall asleep like I normally do. Instead, worn out but needing something to occupy me I decided to stitch a card for Dr 18. I wanted to thank him for all the care he had given me but I also wanted something that would reflect his sense of humour. This is the finished article. 

I thought it summed up me, my problems and the ward that he had been working on. 

I was looking forward to 3 of my friends from my coffee group coming to visit that evening but about an hour before they were due to arrive I felt the familiar pang of pain in my rectum and knew that yet again this was not going to be short lived. Surely not twice in one day? My heart sank. I didn't think I had any energy left to deal with another episode. 

But another episode I was going to have and in desperation I rang my parents. "Pray with me" I begged them because I didn't know what else I could do to get through the pain. I was leaning on the bed and rocking and swaying but nothing alleviated the pain. 

The Charge Nurse brought me the gas and air but rather than breath on it constantly I tried to do 5 normal breaths and 3 on the gas. This stopped me from going la la with it and managed to help the pain equally as well. After about 35 minutes on the phone to my parents I felt quite calm and decided that I was tired from rocking so I got into bed. I said that I would text them when the episode finished. 

I put my headphones in and listened to some calming music. I wanted to stop myself from getting too worked up but although it meant that I handled the attack better it didn't change the nature or the duration as this one lasted 2 hours. 

My friends arrived about an hour into the episode and were shocked I think to see me in so much pain. It helped having them there and although it did distract me a little from the pain, it was still there, searing through my rectum like a punching fist. 

After the pain subsided I felt that I needed to walk. I thought that maybe by walking it might relieve any of the spasms  that were left but also get me off the ward and some fresh air.

Although it was dark I took my 3 friends on the walk that we usually do at 11am, showing them all the sights including our mental bench! As we went past the mental health unit there was a police van parked up, with an obviously agitated patient to be admitted as we could hear him banging and see him rocking the police van from inside. We walked a bit quicker to get past that just incase it all kicked off!

When we got back to the ward we went to the dayroom as official visiting times were over, plus they wanted a cup of tea. Sitting drinking the tea I felt happy, surrounded by some of my friends that had walked with me in this journey for the last 6 years but also sad because I knew the time was coming to say goodbye to them. I love people visiting but it leaves me feeling so upset when they go as the emptiness around my bed, but in my heart, is even more pronounced. 

But tomorrow is Dr 7's ward round and hopefully I will get some answers about what is causing the pain, what they can do to fix and how long it will be until I'm home to my family. Fingers crossed. 

NB x