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It is a little bit out of date as the NHS doesn't tend to have a WiFi connection in hospital and I can only post when I get home and posts take a while to write.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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Friday, 8 November 2013

The weakest link

Throughout all of todays activities the weakest link has been me and my crappy veins. 

After a lovely 6 hours of uninterrupted sleep, and then several more hours of dozing the failure of my veins to give up a drop of blood has resulted in me having to spend a second night in hospital.

After seeing my colorectal surgeon and his minions this morning, and maybe showing off a picture of baby Hope. He decided that he wanted me to have the blood transfusion that St Luke's had cancelled yesterday because the new HB level was worrying and we needed to stem the decline.

A blood transfusion should be a fairly simple straightforward procedure. This would be my 4th so I thought I knew what to expect. 

However you learn something new everyday and today's revelation was that before they transfuse the blood they have to do a crossmatch. This means that they need a sample of your blood to mix with the blood that they are going to transfuse and check it is not going to clot or react. Far bette for this to happen in a test tube, than in my body.

This meant that they needed one tiny little pink lidded vial of my blood. Could we get one, not before lunch. 

It reads like a bad joke, what do you get if you cross one secondary bowel cancer patient with crappy veins and low HB levels with 2 very experienced ward sisters in SAU? Frustration!!

I am now modelling several new bruises where butterflies (which are tiny needles) have been inserted into promising looking veins, the wiggled around a bit and no blood was forthcoming. I think there were 5 or 6 attempts this morning. I had more a patches than the Black Pearl!!

The last resort was to call an anaesthetist or Dr, but before that the sister had one last try, in the back of my hand there was a vein. This vein yielded enough blood to fill the vial and we rejoiced. I have never been so happy to see my blood.

This blood was o precious she walked it to the lab herself rather than rely on the normal systems. 

So blood taken, time to disconnect chemo. This also overjoyed me greatly as it meant that my blood transfusion could go through my PICC line, which means far less beeping when you move as you do not 'occlude' the pump so much.

Here we encounter another drama. Apparently it is fine for Tony to disconnect my cytotoxic chemotherapy pump in a hotel room in Cardiff and leave the sharps bucket knocking around the boot of my car for a week. But here, I have to be wheeled to the chemotherapy suite, where I am surrounded by curtains and the pump is disconnected all officially by an oncology nurse who is not used to this kind of pump as they don't deal with this type of chemo in East Surrey. Why I don't know, my life would be a lot easier if my chemo could be done in my local primary care trust, but that is a whole other story.

So back on the SAU, and time for the observations before the blood arrives. But that is rudely inteerupted by the arrival of my family. Perfect timing.

Here the nurses were superb. I needed to have my cannula removed as the blood was now going to be going into the PICC line, so the children went and hid behind the curtain while it was taken out. Then we needed to do my BP, O2, pulse and temperature. The sister was fab, she asked Isaac to read off the numbers from her machine and check that everything was ok. 

While we waited for the blood to arrive I enjoyed the freedom of not being plugged into anything, I cuddled and played  with my children and enjoyed the sense of normality they provide. 

The blood arrived and is decided it wouldn't hurt for the children to see what was going to happen. The sister let Imogen feel the bag of blood and how squishy it was and how it looks like ketchup!! Imogen asked how they were going to take mummy's old blood out and we explained that it is more like topping the car up with disease rather than taking away old blood and putting new blood in because I need my old blood too!!

More BP, O2, pulse and temperature checks with Isaac doing the reading and checking all the figures. We also checked Imogen's pulse and daddies pulse, but Isaac was not ready for that yet.

My first unit of blood finished just as the nurses hand over so the lovely sister was prepared for the night staff to start the second unit about the same time I would need my next dose of morphine. 

That didn't happen. Instead I am sitting on a new ward, with liquid paracetamol, considering making a complaint about one of the most uncaring members of the nursing profession I have come across. Someone who left me sobbing and screaming in pain on the floor and made no offers of help to me to move. & who told me that as I was complaining about the noise last night,I should have the decency to keep the noise down as I couldn't possibly be in that much pain. But that is a story for a later date. I need some time to reflect.