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It is a little bit out of date as the NHS doesn't tend to have a WiFi connection in hospital and I can only post when I get home and posts take a while to write.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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Saturday, 21 September 2013

Moving forwards

Earlier this week following my disappointing colonoscopy, I managed to get one of those rare things, A same day GP appointment. I don't quite know how I managed it? I wasn't on the phone constantly pressing redial at 8am when the lines opened, instead I called about 9.10, when we got back from dropping Isaac at school and was able to get an appointment for later that morning.

Please don't hate me.

Why did I feel the need to go back to the GP? Well, I weighed myself again & was shocked to say the least, ready for it??

58.4kg, that's under 9.5stone, that definitely makes me underweight. It means I've lost about a stone in the last 6 weeks. This shouldn't have happened, I've been eating better - jacket potatoes, salad, soup, chilli, tuna and lots of fruit - plums, apples, pears, melon, grapes, bananas.

When I walked into the GP's room he took one look at me and made me stand on the scales. Finally someone agreed with me.

'There is definitely a problem he said.

We talked some more about my bowel issues, the clear colonoscopy, the referral for an endoscopy.

He agrees with me that my body is not processing something. He kept mentioning malabsorption issues. I bought up the coeliac connection and he has agreed to test for it, alongside a plethora of other blood tests and stool samples.

So, my endoscopy letter came today, it's on Friday. Not sure whether to go for the local anaesthetic or the sedation again? I am inclined to go for sedation given the discomfort I experienced when having an NG tube inserted almost 2 years ago. 

Blood tests are also on Friday, it does take a couple of weeks for results, but hopefully we are moving towards some answers.

Wednesday, 18 September 2013

Colonoscopy round 2

At 7.15 yesterday morning Tony dropped me off at the hospital for another go with the colonoscopy. 

Having been up most of the night with the preparation going on, the moment I walked through the doors I HAD to go. If I had known how much of a problem this was going to cause later on, I would have rather waited. Alas hindsight is a marvellous thing.

I got to the unit and gave my name, was asked where my baby was and then took a seat. A this point Tony was dropping the 2 bigger children off with childcarers who would be able to look after them and drop them off at school etc. 

After about 45 minutes waiting I was called to meet my anaesthetist who was lovely and went through a few questions about me and my history. We talked about my crappy veins and she reassured me that this would not be a problem. 

I went back into the waiting room and then was called to be admitted by a HCA. Again the bowel related urgency struck and I needed to go. She gave me a sample pot, and I really tried, but having not drunk anything since about midnight, all I could produce was bowel motions. 

I went into her room and went through all the questions again. I mean the NHS could be so much more efficient if one person did this rather than the 3 that I eventually saw, who went through the same thing. She told me that I really needed to try and produce a sample.

About 9am Tony & Hope arrived, as the anaesthetist had told me I was first on the list I decided to feed Hope fairly soon. Just after I had finished feeding her I was called to meet the consultant who would do the procedure. I signed all he consent forms and was told to change into a hospital gown and the lovely stockings. 

Then a nurse came in and told me I couldn't go until I had passed urine. At this point I had tried three times and was not able to pass urine. I couldn't understand why it was so important and told her I had passed urine when I entered the hospital as due to the colonoscopy prep I had had to go, and was not able to produce anymore.

As I was explaining this, the nurse walked out of the room and I could overhear her talking to a colleague about how I was shouting and abusing her. I DID NOT SHOUT AND I CERTAINLY WASN'T ABUSING HER. I had calmly pointed out that this was stressful for me due to having just fed my baby because I knew I was due to go up, and I could not always produce urine on demand. 

Eventually, probably about an hour later, someone else, I don't know who she was, came in and told me I had to pass urine. I explained I couldn't. All they wanted to know was whether I could be pregnant. I can definitely confirm there is no way I am pregnant. All someone had to do was ask. 

Eventually I was taken up to theatre and met my anaesthetist again.

She couldn't find a vein, so gave me some lovely gas, which I took three puffs and  I was out. 

I woke up in recovery, with a cannula in the crook of my elbow and a lovely nurse checking all my vital signs.

I was eventually reunited with Tony and Hope, who had refused the bottle he offered her, and then the consultant came round.

I'm still processing what he told me.

My colon is clear, no problems, nothing to worry about. But he did take some biopsies for microcollitis.

We had a bit of a chat about my symptoms and he is referring me for an endoscopy, to check my stomach, but he agrees something is definitely  wrong with the way my body is processing my food.

In the meantime I am the proud owner of a photo of the inside of my colon!!

Tuesday, 10 September 2013

Thinking outside the box

Thank goodness for managers and people who can think outside the box. I'll elaborate more in a second.

On Saturday I had my colonoscopy pre assessment appointment. This was basically a tick box exercise which I found very unsatisfactory. The lack of understanding about breastfeeding amongst healthcare professionals never ceases to amaze me. 

The nurse who completed my assessment was very dismissive of my need to breastfeed Hope before & after the procedure and TOLD me that anaesthetics and breastfeeding don't mix, you have to express or give formula. When I told her that wasn't really an option as Hope resists the bottle I was told that I'd probably have to wait until I'd finished breastfeeding as you CAN'T feed for 48 hours after a general anaesthetic. 

I questioned this as I know people have babies under general anaesthetic and feed pretty much straight away and was told that doesn't happen!! 

The appointment was left that she would speak with an anaesthetist and call me on Monday.

Monday came and went & no phone call. Today I was gearing myself up to call, when my phone rang. 

It was the endoscopy department. After confirming who I was she launched straight into her rant.

'We need to know whether you are having your colonoscopy on 17th as we have been told you refuse to stop breastfeeding'

Wow, talk about confrontational. I stopped her at this point. 

I am not refusing to stop breastfeeding, I was waiting for a phone call to confirm whether a suitable anaesthetic was available for me as a breastfeeding mother. 

She told me...I am not a clinician, but no anaesthetic is suitable for breastfeeding you have to express for 48 hours or give formula. 

Again I said that I thought this was not correct and would like to see what an anaesthetist said.

She reluctantly agreed and I prepared to vent my spleen on here about how breastfeeding unfriendly my local hospital was, when the phone rang.

It was the manager of the pre assessment unit, she was not interested in ticking boxes, but interested in working with me to find a solution. 

I explained what I saw happening, so that we could make this work. It's simple really.

Tony & Hope come with me, I feed before I go under, Tony & Hope wander around the hospital, I come round and pump, dump, then feed. 

Fine, she said no problem. 

In reality, I have to be at the hospital for 7:30 so, we will all go to the hospital and drop me off, Tony will bring all three children back and drop them at respective childcarers, then come back, see where I am and follow the plan.

All I can say is thank heavens for managers who have common sense and can think outside the very narrow boxes the NHS seems to use.