"There's a myth that anyone who has a liver problem has brought it on themselves" This quote is from a Crohn's disease patient living with a blocked portal vein hoping for a liver transplant (Independent 31st Oct 2010)

Saturday, 4 December 2010


Haven't been sleeping so well these last few nights. Part of it is going over what I hope for the appointment on Tuesday. I've written notes in preparation but it still pops into my head in the early hours. It would be nice to hear that a 100% definite diagnosis of the liver inflammation can be made using the data we have already, and that some tried and trusted medication will deal with it and prevent the cirrhosis getting worse, but I know it won't happen like that!
I checked with O'Blimey's secretary last week to see what has been sent over to Dr Caravan. My pre-op CT and MRI scans, she said, giggling in an embarassed way when I reminded her Dr Caravan had arranged those in the first place. And my post op blood tests (which wont be any use as they are all normal). Once I'd gone into more detail as to why I had hoped for pathology material she was forthcoming and helpful. She thought it unlikely the pathologist would have been asked to look for hepatitis in the specimen as the focus was on assessing clear tumour margins. She suggests I get a referral to a specialist hepatologist. She could arrange for me to be seen within North Manchester, but sympathised with the distances involved and agreed I would be wiser to ask Caravan to refer me to the Manchester Royal Infirmary hepatologist.

I'm following another blog. This one by a nurse in the US. A 9 year survivor of a rare cancer that starts in the appendix. Similar to Pseudomyxoma Peritonei or PMP which is treated in the UK by the Basingstoke team recommended to me at the time of diagnosis. I'm reading her blog not because of similarities in treatment but because of the words she uses to summarize what she calls being in the 'cancer community'. Here's one thing she says:
"As a member of the cancer community, I have become truly intrigued by the emotional turmoil cancer creates in us. Unlike other illnesses where you are treated, recover and move on, cancer is different. It does not just cause physical turmoil, but emotional turmoil as well...and I've come to learn that often the physical recovery is much easier than the emotional recovery, the living with fear and uncertainty after physical healing.
It seems no one uses the "cure" word nowadays, we are in "long term remission". That phrase makes it sound as if we still have cancer, that it just isn't active at the moment......implying that it can recur at any time. Implying that we can never move beyond cancer follow-up testing. My doctors keep checking...and checking...and checking my tumor markers. They've been checking them every few months for years now,
The testing goes on, and on, and on.....
We can't walk away and forever leave the scene of the trauma. We revisit the scene of the trauma with every CT scan, with every tumor marker test. In a sense, it is never over for us, we always feel vulnerable."

All blogs have a space for comments. Comments are good, but sometimes there is a helplessness at knowing what to say, resorting to the 'get well soon' of greeting cards. She writes:
Other peoples comments:
"Let's celebrate, you've recovered from surgery/chemo! Now you can go back to your normal before-cancer life , the tough part is over!'
Actually for most of us, after surgery or after chemo is when the tough part really begins. Those around us don't understand that, at first even we don't understand why we aren't happy and feeling great.
Chemo and surgery were our tools against the enemy, cancer. Now we are vulnerable and afraid, we know how quickly our lives can change and we don't trust the future anymore. We don't know if cancer is hiding and waiting to attack us again while we are defenceless."

1 comment:

  1. Fiona,

    Just wanted to say Good Luck with the appointment tomorrow.....hoping you get good, positive news

    Much luv xxxxx