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It is a little bit out of date as the NHS doesn't tend to have a WiFi connection in hospital and I can only post when I get home and posts take a while to write.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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Tuesday, 14 January 2014
Not the NHS's finest moment
Today I saw my consultant, not one of his minions or underlings, but my oncologist. It is so refreshing to see him, he understands the disease and me and treats me like a person with opinions & knowledge rather than an inconvenience in their day, who asks awkward questions.
We talked about my admission's to hospital over the festive period, specifically about the unknown bleeding and where it was coming from and what may have caused it. It seems to have been the tumour causing the bleeding and my 'wonder drug' Avastin is what appears to have caused it. You might remember that Avastin attaches to specific proteins on the surface of the tumour. It also targets and weakens the blood vessels to reduce the blood supply to the tumour. In some people, ie me, it can cause unexplained bleeding. This means that I cannot have anymore Avastin, as we definitely don't want anymore bleeding and fainting.
We then talked about my tumour. It appears that the scans I had done in Somerset when I was admitted have not made it to Sussex yet. They are in the ether. This means that we do not know the status of my tumour and whether it has shrunk or not. So he and his specialist nurses are on the case and I have to go back in 2 weeks to see what the way forward is.
So not the NHS's finest hours. Scans I had done over 2 weeks ago which can be transmitted electronically have not managed to make it here.
This brings me onto one other thing. Why do I have an NHS number , but when admitted to hospital a hospital number. Why not just use one number to treat your patient. Is it of any benefit to me to have a different hospital number for every hospital I am treated in? This means for chemo alone I have 2 hospital numbers because I have outpatients treatment in Crawley and chemo in Guildford I have a number for each hospital. Why not just use my NHS number.
If anyone can answer his please let me know.