Thursday, 19 May 2011


Hi All,

Had my Onco appointment this afternoon which both Fran and I agreed went really well.

Dr F and my Weston Park Macmillan Nurse were really on the ball...Dr F's first statement was that I was a bit of a puzzle as they couldn't find a cause for the pain. She read the MRI scan report out that noted some scar tissue which was expected....

I am to be referred to a pain specialist to talk through my current medication and we are to monitor the circulation problems which cause everything in the pelvic region to go purple when I stand.

In order to assist my inability to sit for more than 5 minutes I am to be booked in for an overnight stay in future to have my Irinotecan and Avastin as the day case unit only has a limited amount of beds therefore I cannot be certain to get a bed - best to book me in overnight. I will be able to relax better too so good all-round....they also do a great breakfast at Weston Park :-)

My CEA level is up a bit to 5.1 from 3.8 although Dr F noted this could be because of the inflammation in my backside so again something else to monitor.

Home now watching Deal or No Deal lying comfortable on my bed....things are not perfect not by a mile however we have a plan and a good team who seem to know what they are doing.

Much Love to all

Tony xxx


  1. Hi Tony,
    Glad to see thngs moving along positively although it is annoying that they cannot pin down exactly what is causing the pain. I am sure they will have considered the scar tissue but I thought I would just mention an issue I had with scar tissue about ten years ago. I had torn a muscle and had a lot of swelling etc but it cleared up and was fine. Howvever some time after I started to be unable to walk more than 400 yards without having to sit down because of the pain. I went to the doctors, was tested in hospital but they couldn't work out what the problem was. This lasted about 4 years and at no time did they put it down to the muscle tear although they were aware of it. Eventually I blew my top as nothing was being done ss almost as a last resort they put me to a physiotherapist. At the very first meeting she spotted what she thought was wrong just by looking at my legs side by side. Scar tissue had formed after the muscle tear and it was preventing the muscles operating, hence the pain and no new muscle could develop. I was put on a course of ultrasound treatment to break up the scar tissue and exercise to start the muscle to help break it up. In six weeks I could walk miles and have had no pain since. This may be totally irrelevant Tony but with yourself the subject of scar tissue has kept coming up so I just thought it was worth a mention just in case as my scar tissue was having a profound effect on me and if there was the slightest chance it may be involved I thought it worth the mention. Anyway I hope things keep moving in the right direction although listening to Deal or no Deal would not be regarded as a great leap forward. Take care Big Man.


  2. You need Hugh Laurie's 'House MD' on your case! He takes a patient with a 3 year history of unexplained pelvic pain and by the end of the episode the diagnosis is epilepsy.

    Not a serious suggestion of course, but sounds like your case needs some thinking outside the box

  3. things can never be straightforward can they ??grahams input is interesting though , all suggestions welcome !!xxxx love ma n p

  4. Glad you have had some encouraging news and hope things will improve for you.It is no joke being laid up when you are desperate to get on with things.
    Keep your chin up ,you will get there.
    Rose xxx