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It is a little bit out of date as the NHS doesn't tend to have a WiFi connection in hospital and I can only post when I get home and posts take a while to write.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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Thursday, 7 November 2013

NHS Communication problems

Shortly after posting last night things took an unpexcted turn for the worse.

Around 3am as I was making another bathroom pilgrimage I was gripped by some of the most intense pain I have ever had. I felt like something was swelling up on my right hand side and nothing I could do would alleviate this. 

Let me get one thing clear I can deal with quite a lot of pain. I have been in pain while making bathroom visits on and off for at least 4 years now. The cramping I can deal with as I know it is generally short lived while my bowels evacuate. This was a whole new level of pain. I was screaming and crying with the intensity. It hurt when I moved, it hurt as I breathed even opening my bowels did nothing to alleviate it.

I was screaming and crying so loudly that I woke Tony, luckily it didn't wake the children. Tony did the only thing that seemed sensible dialled 999.

He relayed all my symptoms to them as I screamed and cried and honestly thought that this was it. I couldn't believe that the irinotecan side effects were kicking in this soon. The delayed diarrhoea is not supposed to kick in until about 24 hours until after the chemo ends and that was about what happened before so I was worried.

The ambulance crew of Ben and Jules were lovely. They brought some gas and air. Normally entenox is a fantastic pain killer. I have had it for all three births and when I was admitted to hospital via ambulance before and it was fab. I love the slightly light headed feel you get and how you gauge how well it is working. This time it was not touching the pain. I think at one point they said I was an 11/10 on the pain scale.

I got in the ambulance and Ben gave me a canula and some lovely liquid paracetamol, while I continued to suck on the gas and air. The paracetamol is 10 times stronger than normal paracetamol and started to make a dent in the pain. But then we upped the ante and hit it with the morphine and gas and air.

Things continud along the same lines as yesterday throughout my stay in A&E.  I had some blood taken to check infection & HB levels. You can tell the NHS is under pressure, but the nurses absolutely deliver. However I could tell that the to the Dr's and registrars I was dealing with had very limited knowledge of cancer and chemo and I did have to explain things like I was explaining them to the kids again. 

After a chest and abdominal X-ray the Dr came and told me there was some distension in my colon and I was being referred back to the lovely Mr Campbell-Smiths team to investigate.

Things swiftly started to go down hill from here. As I was seeing the registrar and running through all my history and symptoms again someone was knocking on the curtain saying I needed to be moved to SAU. The registrar did tell them they would have to wait as I was being examined and she told me she wanted to carry out a rectal exam, but due to their pushyness she would wait until I was on SAU. The reason for the urgency for me to be moved. TARGETS. I had been in A&E for 4 hours and that was it my time was up. If I stayed longer there would be a fine. I mean how stupid is that. I was being examined by a Dr and the powers that be have determined that I have to move now. So the rectal exam was postponed, and I was moved to SAU.

We got to SAU and the nurse was lovely, she would look into me being able to get something to eat. It was about 9.45 and some toast would have been lovely. She tried to get hold of the ADR, with limited success. 

Tony and Hope had arrived at A&E about 6am and were still with me, but it's fairly boring so they headed home and the long night caught up with me. I took my morphine and oromorph as I wasn't written up for any pain relief yet, and Tony had to take it home with him because it is a controlled drug. 

About 11.30 the Dr came and woke me up to do the rectal exam. I went to the loo (as usual) and came back to find she had disappeared and been replaced with a Macmillan nurse who made a lovely sounding board. The Macmillan nurse listened to me off load for the best part of an hour and left with some next steps and to find out when I could have something to eat. 

One of the staff nurses then came and apologised, there had been a major trauma and she was trying to bleep the Dr to find out when I could eat. When I still hadn't heard anything by the time my next lot of observations was done at 2.30ish I again asked when I could have something to eat. This staff nurse didn't acknowledge the question, but I assumed she would go and find out. Still nothing. 

At this point I was tired, I was hungry. I didn't dare go back to sleep in case the Dr came back and woke me up. Finally Tony and the kids arrived. I was overwhelmed with joy and started crying. He knew something was up and asked why I hadn't been pushing it.

 I just hadn't. I can't explain why. I think it goes back to the feelings of invisibility I have had before. I am in my 30's, I am surrounded by people who generally require a higher level of care as they are in generally 70+. I feel like sometimes the nurses ignore the needs of younger people because we can cope.

I cracked, I pressed the buzzer. Even then no one came immediately. We had the curtains drawn for a bit of privacy. We heard a member of staff say, someone's buzzing, but no one came for about 6 or 7 minutes. Good job I wasn't bleeding uncontrollably of something.

When a nurse arrived I let rip. I told her I was tired, I was hungry. I hadn't eaten since 6.30pm the previous evening, I had been woken up for an exam I hadn't 't had, what was going on. As a patient undergoing chemo and cancer I would have though ensuring my blood sugar remained stable and I ate would have been quite high priority.

Finally at about 4.30 I got some food, there was a choice - tuna pasta salad or corned beef sandwich. I opted for the salad, it wasn't great, but it was better than nothing.

Finally the Dr came back and I asked her why she had not been back to exam me. Turns out she had forgotten all about it, but she had been busy. The team had looked at my X-ray and it appeared that the distension was actually in my stomach so I would need to have an NG tube inserted to try and see if it would take the distension down. I would also need a blood transfusion. I knew that. I was supposed to be going to St Luke's to haveq one tomorrow. My HB levels have dropped down to 7.something again.

So now, I have connected to the free wifi! listened to the new 3 Daft Monkeys album, Of Stones and Bones and had my NG tube inserted and am waiting to find out whether I am speeding the night on SAU or if I am going to be moved to a ward.

Never let it be said I don't live an exciting life.

And people - stop apologising, you have nothing to apologise for. You are reading this, you are thinking of me, you are giving me incredible support. I should be apologising to you for giving you way to much detail about the everyday nuances of my bowels and talking far to much about diarrhoea. But if it makes you think about your bowel habits and go to your GP, or makes you get that lump or mole checked out, it is worth every cringeworthy thing I have shared with you.