This started as a blog to rant frustrations in parenting my 2 'adorable' children. It is now my way of dealing with my diagnosis of Bowel Cancer in August 2011 & the subsequent chemotherapy experience. In April 2013, we were blessed with the arrival of Baby Hope and are feeling very lucky. In October 2013, I was diagnosed with peritoneal disease and liver mets, which are inoperable and require aggressive chemotherapy.
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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It is a little bit out of date as the NHS doesn't tend to have a WiFi connection in hospital and I can only post when I get home and posts take a while to write.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, 11 September 2011
A week of communication
Monday morning, just as we are leaving to make the most of the nice weather the postman comes. 2 handwritten envelopes and one from the hospital.
We go off for play and cake, but are early so I open the letters in the car. What a shock, the letter from the hospital is a summary of my construction and has a hand written note explaining that fertility treatment 's not available locally, so they have referred me to a clinic in London. The other one is from the fertility clinic asking me to call and make an appointment and pay the 'initial' consultation fee of £180. I was shell shocked. Nothing had been mentioned about private treatment.
When I got home the clinic called, I was still in shock, tony was still asleep and I hadn't talked too anyone about it. I told them I couldn't make an appointment as I was expecting NHS treatment. They were lovely, they offer NHS treatment, and told me to call my consultant.
That was easier said than done!!
I called on Tuesday afternoon, and got her voicemail, she was out of the office. I left a message thinking someone else must check her messages. No one has returned the call yet.
Wednesday morning I had no children so got on the phone.
First call Macmillan, whose call I had missed earliest in The week. They were great, gave me lots me information about benefits I might be entitled too and the numbers to call.
Second call the support nurses at east surrey. No answer so I left a message.
After I'd got Isaac from preschool, I got back on the phone. I got the nurse at east surrey this time and she told me to call the secretary in guildford, and that she knew nothing about paying for fertility treatment.
Then job centre plus about benefits. It all seemed so simple when I was talking to Macmillan, unfortunately the person I spoke to didn't seem to listen very well. I must have told her it was cancer and I needed chemotherapy about 4 or 5 times. Eventually we got there and she agreed to send the relevant info out.
Then I called the secretary in guildford, she struggled with what I was trying to explain but we got there eventually and I am waiting for the returned phone call.
Finally the GP to arrange a medical certificate.
Thursday was about preschool and sleeping Imogen. No phone calls made or received.
On Friday the stuff came from both Macmillan and job centre plus. Also letters from guildford. Talk about short notice, pre chemotherapy appointment on Wednesday & appointment for the 'line' the following Monday.
I realised I hadn't heard from the secretary and tried to call her. She doesn't work Friday or Monday, so I'll have to wait til Tuesday. But I have been thinking that I don't want the line inserted until the fertility stuff has been done, so will make more phone calls on Monday!!
Once I got to looking at the benefits stuff I realised I need to call them too as they had some very random info in there too.
So looks like another week of phone calls
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Labels:
bowel cancer,
chemotherapy,
NHS,
st Luke's
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