About this Blog

This blog started as an online diary and place for me to rant about annoyances in my family.

However since July it has become a place for me to catalogue and express my views and opinions on the treatment I have recieved following the diagnosis of a potentially cancerous tumor in my bowel.

On 3rd August 2011 I was told that it was cancerous. In April 2012 I was given the all clear.

October 15th 2013 I was diagnosed with peritoneal disease and liver metastases. The cancer was back and this time it is inoperable.

It is a little bit out of date as the NHS doesn't tend to have a WiFi connection in hospital and I can only post when I get home and posts take a while to write.

It is NOT about individuals or the nursing profession. It is about some of the inadequacies in the system and the way the NHS is failing some people.

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Tuesday, 2 August 2011

20th - 22nd July - The Operation, the first night & agony

Wednesday was fairly uneventful. I got something to unblock me, I signed the consent form for the operation, A right hemicolonectomy, and I had to drink the worst drink I have ever had known as 'preload'. It was just really sugary water, but it was very unpleasant. 

I became fluids only from 6pm, other than the preload, I had one lot at 6pm, another at 9pm then was woken at 5.50am the following morning because other than a sip of water to take my pain killers I was now nil by mouth.

Thursday morning things were still up in the air. I was still an emergency operation so I could have been bumped if something else came up. Luckily nothing did so I had a visit from the anaesthetist, then the colorectal nurse, who I had seen a couple of times before to talk about things came along & then the porter arrived at about 9.45.

I settled down in my bed and was whisked off to pre op, where I had to repeat myself over and over again and confirm it was my signature about 3 times to ensure that they definitely had the right person and weren't going to remove a section of some poor unsuspecting persons bowel and associated lymph nodes.

At 10.15 I was taken to be anaesthetised. Here the constant pricking of the last two weeks caught up with me. Having had 4 canualas in when I had been in hospital previously as well as some stand alone blood tests both on the previous visit and current visit my veins had decided enough was enough!!.

Initially they couldn't find a tourniquet so one of the surgical nurses acted as a human tourniquet starting with the back of my left hand, then the back of my right. Nothing, Nada, No luck with that, my veins declined to play ball.

The anaesthetic doctor than bought out the big guns - the ultrasound machine - he scanned the inside of my left elbow, 'oh, lovely veins' he said, took out a needle and Nothing, Nada, No luck there either. So he scooted him and his machine around to the other side, scanned my right elbow and again 'Oh, more lovely veins' I even got to see them on the screen. He took his last needle, put it in, wiggled it around (yeah that sounds rude I know) and again Nothing, Nada

They had a little muttered conversation behind me, it was now about 10.30am and I was starting to worry about how they were going to anaesthetise me if they couldn't find a vein.

Then they came back. 'We're going to have to put a central line in'

It turns out a central line goes into your neck. 

This was one of the scariest things I have been through, at this point anyway. My head was covered with a plastic sheet, I had, in total, 3 injections of local anaesthetic into my neck and then was manipulated, proded, poked and manhandled for about 25 minutes while the anaesthetist inserted the central line. I was terrified. All your instincts tell you that needles and necks don't mix, but here I was voluntarily allowing someone I had met about 2 hours ago inject me and manhandle me to put something in. I am not ashamed to say that I squeezed the nurses hand incredibly hard, and cried quite profusely too. It got really hot under the plastic sheet and you feel very claustrophobic. 

After that I had to then roll onto my side while they put the epidural in. I didn't have much faith in this as I had had one when I had Isaac and it hadn't worked all that well. I don't remember much after that.

My next vague memory is of being made to sit forward, and I think they put something behind me and took an X-Ray, but I am not sure.

I did eventually come round and was in a slightly more sitting position and felt very drowsy and uncomfortable. 

I spent about 3 hours in recovery. Periodically I remember someone touching me with an ice cube and a needle. I think this was something to do with the epidural. Eventually the consultant came in and he told me that he had phoned Tony and told him I was out and then I asked the question that I was not sure I wanted to know the answer too.

'Was it a success?'

He told me the tumor was the size of a golf ball and he had removed a lot of the surrounding lymph nodes and tissue and that he was fairly sure that the tumor was cancerous, but it would have to be sent off for histology before we would know.

At the same time he set up one of mans greatest inventions, a PCA. PCA stands for patient controlled analgesia. It is basically a morphine drip that you, as the patient, control. You get a button that you can press and it delivers morphine into your blood stream. I could only press the button once every 5 minutes but that was enough.

About 5.30pm I was moved into the High Dependancy or Surgical Stepdown unit. 

This was a most unpleasant experience. It started with my epidural being turned off after about an hour in there. It eventually got restarted about midnight despite me being in tears due to the pain despite pressing my PCA button almost constantly. On top of this, I received all my belongings from the ward along with a note from Tony telling me Becci and Phil had had their baby at 3.30pm and he had decided to take mum and the kids to Somerset to see the baby rather than coming to see his wife in hospital. As soon as I got this message I tried to call him. He didn't answer his phone. I managed a one word message on his voicemail. I then called my dad at home and told him what ward I was on, what the hospital phone number was and to get Tony to call me as soon as possible. Tony didn't call me til 10.30 because they had been to the hospital first - again New baby comes before sick wife. Yes I was annoyed about this. 

After speaking to Tony and telling him what the surgeon had told me about the tumor I thought that I might get some sleep. This was harder than it sounds. I was in a lot of pain, I had to have my blood pressure, temperature and O2 SATS taken hourly throughout the night. As I said earlier someone finally came and restarted my epidural about midnight, and I managed to get about 3 hours sleep, until the morphine ran out. Then I encountered another power hungry doctor who obviously did not like night shifts. This doctor refused me more morphine and I had to make do with liquid paracetamol. 

This was not good and I think I might have blanked out what happened next because I want to speak to my consultant and see what actually happened so I  know rather than relying on my memory.

Writing this, although cathartic, has made me sob several times so I shall let you know about my day in surgical stepdown unit soon.