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It is a little bit out of date as the NHS doesn't tend to have a WiFi connection in hospital and I can only post when I get home and posts take a while to write.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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Wednesday, 11 January 2012

Welcome to 2012, some answers at last

Happy new year. 


Yeah, I know I am a bit late, but hey, better late than never!!!


Today I have finally got some 'closure' on the fiasco that was my pain relief after my surgery in July. 


I can't believe it has taken this long to sort out, but appears that despite me having been to East Surrey Hospital to have Imogen (she'll be 2 next month), twice for the abdominal pains in the summer & twice in November for the 'blockage' and telling them my phone number on each occassion they still had it incorrect. They finally thought to use my mobile number so I managed to give them the correct number & arrange an appointment with the head anaethitist and the senior pain nurse.


To summarise what happened after surgery, and to save you having to trawl the pages of this blog to find it. 

  • My epidural was turned off and then not turned back on for about 6 hours despite repeated requests for it to be turned on
  • When my PCA (patient controlled analgesia) ran out during the night. I was told that I couldn't have anymore and I would need to have paracetamol.
Well, I actually felt that I was being taken seriously now. 

I had three questions I wanted answered. Here they are, along with the answers I was given

  1. Why was the epidural turned off? It turns out that epidurals move up the body and if they get too high, they can cause problems with breathing. My epidural had moved too high and so it had to be turned off. However this was not explained at the time and once it was turned off and the nurse walked away the call button was not left in my reach so I was unable to attract the nurses attention. 
  2. Why did it take so long for my epidural to be turned back on? The combination of pain relief that I had, eg PCA and epidural, is not common and so there is a high probability that the staff did not realise how much pain I was in. Also 'out of hours' there are only three anaethetists on duty - 1 for emergencies, 1 on the labour ward & 1 for theatre. If the theatrical anaethetist was busy then it would have taken time for them to come to me. I can accept this. But once they had started to contact them why did no one communicate to me that they were trying to contact them, rather than leaving me waiting and wondering.
  3. Why was I not given more morphine when I needed it? I was 'written up' for more morphine so the only explanation given was that the junior doctor who was on duty was worried about giving me too many 'opiates'
I also talked about the lack of communication during that first evening and how I felt that sometimes the staff thought that I was exaggerating things or that because I was younger I would be able to cope rather than treating me how they would treat a more mature person. However I also need to remember that there would have been people in the surgical stepdown unit that may have had breathing difficulties or other issues that were potentially more important than my pain. 

However because I was admitted as an emergency and already suffering pain my threshold would have been lowered and my pain receptors already firing. This meant that I needed a higher level of pain relief, hence the combination of epidural & PCA. The anaethetist and the pain nurse also agreed that more training was needed for the nurses on this type of situation. 

The experience has made me more nervous about trusting healthcare professionals. I used to trust what they said regardless. Now I ask more questions and do not take everything at face value. Despite this I still have a huge amount of respect for what you do and know that I could never do it.

One of the things I have learnt over the last 6 months is that there are stars in the health service but there are also things that can be improved. A one size fits all approach does not always fit. I always feel like an anomally. I always feel too young when I am on any ward and sometimes feel rushed or ignored by the doctors or nurses. 

I have, therefore, resolved that if I get readmitted to hospital for any reason I will ask questions and questions and questions. I actually don't care if it annoys people. I am an intelligent young women and also a customer and I deserve to be taken seriously and have my questions answered.