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It is a little bit out of date as the NHS doesn't tend to have a WiFi connection in hospital and I can only post when I get home and posts take a while to write.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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Monday, 22 April 2013

Everyone needs to have Hope

So, you all know I was due to have a baby.

Well, I did, 

Hope Kathryn Hayllar arrived at 17:12pm on Friday 12th April 2013, weighing a tiny 6lb 2oz (or 2.78kg) and is amazing. 

I will post more about her induced arrival in a couple of days, there is something I need to get off my chest first.

Although my pregnancy started off fairly easy with far less sickness and general 'feeling crapness' than the other 2, as it progressed I felt worse and worse. There was the permanent backache that I was discharged from physio for as the physio could do 'nothing else'. I ended up taking cocodamol & tramadol to try and control it (unsuccessfully) and sleeping for no more than 4 to 5 hours a night as the pain would wake me up.
I also had a chest infection at about 30 weeks which led to me coughing so much I would be sick. During the last few weeks, some days, I was bringing up breakfast, lunch & dinner and was feeling so run down it was unbelievable.
Then the piece de resistance. At my 35 week midwife appointment I had glucose & protein in my urine. There had been some traces of glucose in my urine before but this seemed to send my midwife into a panic. Off the back of this appointment she booked me an extra scan to check the size of the baby, despite the fact that I was measuring fine for my dates & an appointment with a consultant.

The scan was lovely. Its always nice to have an excuse to look at your baby. At 35 weeks the baby was guestimated to weigh 5lb, so based on the common assumption that foetus' put on about 1/2lb a week I thought I would be having a baby smaller than my previous 2 (Isaac was 8lb & Imogen was 8lb 7oz). The consultant appointment was another matter all together.


Before I rant, I would like to say this.

If you miss, or turn up late to an NHS appointment you know that there will be consequences. I think that it is disgusting that in this day and age you can book in for your appointment and not be told that the clinic is running 60 minutes late and when you finally get in to see your consultant you are offered no apology for the clinic running late. Not even a polite 'Sorry you were kept waiting.'

So, I drove to East Surrey Hospital for my consultant appointment, which was at 10.30. I arrived about 10.15. The midwife took my blood pressure & sent me off to produce a urine sample and then I waited. Now with the lower back pain I had been having, sitting for a long period of time was really quite painful, but you can't walk around a waiting room too much as their isn't much space for that kind of thing.

I was finally called in to see the registrar at 11.40. So 70 minutes after my appointment time. She told me to sit down, I quite politely said that I would prefer to stand as after so long sitting in the waiting room my back was really quite sore and I needed to be able to mobilize and stretch. At that point she could have apologised for the wait that I had had. No, not this women. Instead she launched into an attack about how she would be unable to examine me if I refused to sit down. I said that I wasn't refusing to sit down, I was uncomfortable sitting down and would be able to lie on the bed to be examined. She told me to get up there then. She offered me no help to lie down or after she had finished examining me to sit back up again.
She then asked me if I had doing my BM pricks. I had no idea what she was talking about and told her this and also told her that I didn't know why I was at this clinic. At this point I'll admit I was quite upset, I was hormonal (& pregnant) but also genuinely confused as to why I was at this clinic and why she hadn't looked at the blood test results that I had had 3 goes to try and get (a whole other story there) and I ended up crying and asking her why was I here and what was she talking about, again. She kept repeating that I needed to be doing BM pricks (still no explanation) and why wasn't I. 
Then I lost it - I told her (again) I had no idea what she was talking about, that I did not appreciate being kept waiting with no apology, that her attitude towards me was quite appalling and (very rude I know) why was I 'only' seeing a registrar rather than a consultant. At this point she went and got the consultant.
I tried to calm down while she was out of the room, but all the pent up fear that this panic had generated was hard to ignore. I have a history of depression & although I tend not to google health symptoms I am a member of mumsnet and spend too much time reading pregnancy and childbirth threads and had panicked my self that I might have a problem with my fluid levels or something else. 
When the consultant came into the room she was not a people person. She called me a silly girl (!) and told me that if I had seen her at the start of my pregnancy rather than the consultant who had signed me off as low risk I would have been deemed high risk due to all my history. I was furious. The women had not even spoken to me and was now making me feel even worse, like I was putting my unborn baby at risk. I told her that I did not appreciate this kind of panic at such a late stage in my pregnancy and that I still did not know why I was here, I told her that I thought it was unacceptable to talk to me like that, to not apologise for keeping me waiting for so long. I also told her that I would have appreciated someone actually looking at my blood results and telling me what I was doing here. 
finally, I got an explanation. There seemed to be some assumption that the glucose in my urine demonstrated that I had gestational diabetes. However this was not backed up by my blood results, from my Glucose Tolerance Test at 28 weeks or the BM prick test they did next or the scan that I had had on Tuesday (& I now know what a BM prick is). But they wanted me to see the diabetes nurse & consultant again.

So, we had Easter, mine involved 2 false labour scares and an Easter Egg hunt with an Easter Bunny and a Butterfly at Standen, a gorgeous National Trust property near East Grinstead.

So, the diabetes nurse. 

Well, she was 30 minutes late, but apologised as she had been called to deal with an emergency. Not a problem, SHE APOLOGISED. Then she had a look at my results. Shock Horror, she thought that it was all a bit of an over reaction. All my blood results were normal, the glucose in my urine was not a concern as it might be that that is the way that my body processes it. There was no reason for me to see her again and she wished me all the best with my pregnancy.

And then back to the consultant ( I was now almost 38 weeks). She was not happy with the diabetes nurse. I had to relate to her (the consultant) that there was nothing showing in my bloods that concerned the diabetes nurse and she was of the opinion that the glucose in my urine was how my body processed it. Again the consultant took her anger out on me. She said that it was not the nurses remit to be telling me that there was nothing to be concerned about and she should have been getting me to monitor my blood sugar (this is what a BM prick is all about) for a week to see if there were any indicators. At this point again I was unhappy. How was I supposed to know that this was what the consultant had expected? I am not a mind reader, and I told her that and maybe she needed to work on her communication with her colleagues (I really can be quite rude when upset and being blamed for things I have no understanding of or control over). She then told me that due to her not knowing whether I had gestational diabetes or not I would need to be induced at 38 weeks.
That turned out to be Thursday, so I had a date and knew that I would be meeting my baby soon.

This has turned out to be longer than I anticipated so I shall let you know about baby Hope's lengthy arrival in a new post very soon.