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It is a little bit out of date as the NHS doesn't tend to have a WiFi connection in hospital and I can only post when I get home and posts take a while to write.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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Sunday, 2 February 2014
On my 12th day in hospital, the consultant said to me
We have a plan to send you home.
But before we get to that let me give you a quick run down of my week in Royal Surrey.
After 2 nights in a bay with 5 other women (mostly elderly, some missing some marbles, several deaf ones and most of them unable to use their buzzer and who insists on shouting for the nurses) I was moved into a private room.
There are benefits and drawbacks to this.
I don't spend the time my children are visiting telling them to be quiet etc, I don't have to worry about using my headphones for the radio or tv I am choosing to watch and can nap to my hearts content. On the negative side, it is very isolating. You don't have a constant nurse presence or anyone to chat to, even if I don't want to chat a lot of the time.
A couple of times I waited 20/30 minutes for my buzzer to be answered or pain relief to be bought. But I am planning a post on this later.
Despite the fact that there are consultants available over the weekend nothing got done. Even on Monday and Tuesday nothing really happened.
On Monday I got a chance to look at my CT scans and see both my liver mets and my tumour in my stomach. But I really felt like screaming, feet were dragging. After all I had been moved because I was and emergency and needed rapid treatment and in my mind nothing seemed to be happening.
When I finally saw the consultant on Tuesday he told me that they had decided to do another endoscopy on Wednesday which may invovle having a shunt inserted into my small bowel to prevent it narrowing. The other reason was too look at the tumour and try and ascertain which blood vessel needed embolising to prevent further bleeding.
I spent Wednesday morning waiting and was finally taken down to theatre at 12:30. The reason I was taken to theatre was because I was going to have a general anaesthetic. I am a bit difficult to sedate apparently and need quite a large amount of sedation relative to a normal person. But can someone please define normal for me.
I woke up in the recovery room with a huge needle in my left arm, with my fluids going through it. It was really sore and I couldn't wait to get it out.
After about 45 minutes I was taken back to the ward and hoped to get the cannula out before the children arrived. Alas that didn't happen, but once the fluids finished you can bet I was on the case and buzzer to get it out. As I type (4 days later) I still have a scab and substantial bruise where that cannula was.
I had hoped to see the consultant later that evening, but nothing. I had hoped to see Dr Cummins ( my oncologist) at some point as he was the person who requested my transfer, but nothing either.
I finally saw the consultant late on Thursday and he basically told me he was not prepared to do anything until I bled again. To be honest, he needs to work on his bedside manner. He had no empathy with my fears and did nothing to try and address how I was feeling. He just told me he was not prepared to operate at the moment and all he would do was send me home with a letter for me to give to anyone if I collapse again telling them to take me straight to Royal Surrey for emergency admission to be operated on immediately.
I was in tears, it was like he was asking me to take my life into my own hands again and put it on hold, hoping I would bleed again. I tried to explain this, he just wouldn't listen and had no reassuran or anything. In all he does not deliver good customer service.
The team must have been gone for about 5 minutes when Tony walked in and found me in tears. I was not coherent and could not articulate why I was so upset so Tony went and found Paul (one of the other Dr's involved in my care) and came back understanding how I felt and what had been going on.
Shortly after Tony left Dr Cummins finally arrived to see me. I explained my disappointment at nothing being done and how slowly it appeared to have happened.
On Friday I finally realised that they were going to let me go home, and so started the preparations for that. I saw Dr Cummins again and we arranged an appointment on Wednesday to follow up my scans. I told him I was interested to know the effect that the chemo I had tolerated had had on the tumour and what the future was likely to be. He thinks I'll be starting a new round of chemo fairly soon.
So, I was going home. I told the staff nurse looking after me that I really needed everything so I could be ready to go home by 4pm as my husband had an important meeting that evening at 6pm. She said that his would be fine. Of course it wasn't and you wait around and wait around. I understand that they need to get drugs from pharmacy, but honestly when you live an hour from the hospital you can't just ring someone once you have your papers.
But eventually everything arrived (4:30) and I was out of there.
I have spent the last two days readjusting to being out. I am now in control of my own pain relief which is a blessing and can take it when I need it. It is a big shock coming out of hospital and you need to time to reassimilate into family life. I am still ill, but coming close to getting some answers I hope.