Letter from Dr Al today. He sums up where we are much better than I, so here is what he said:
"I reviewed Mrs S in clinic today. She is doing well from the liver point of view. She is complaining of aches and pains in the muscles that are similar to previous symptoms that at the time responded to steroids and a possible diagnosis of Polymyalgia rheumatica (PMR) was made. ... the clinical picture she is describing today might be PMR. ..... I would like to do an ESR (erythrocyte sedimentation rate - its a way to measure inflammation in tissue) before committing her to a course of treatment"
He also says he will repeat my Hep B viral load, take another set of liver function tests and alpha-fetoprotein tumour marker and let the GP (and me) know the results as soon as.
ONWARDS AND UPWARDS - a diagnosis and treatment of Hepatocellular carcinoma (primary liver cancer) diagnosed August 2010, presumed caused by 30+ years of chronic hepatitis B. And a search for how to be healthy living with cirrhosis presumed caused by Autoimmune hepatitis (diagnosed April 2011)
Friday, 20 January 2012
Thursday, 19 January 2012
Hepatology clinic
Had my 3-monthly check with Dr Al on Monday 16th. He's the doctor checking on the state of my liver. We looked at last September's test results, and he's happy they all look stable. Then I have 5 new vials of blood taken to test them all again. Logic tells me it would be more sensible to have bloods done a short time before clinic so that we are not reviewing out-of-date results, but who am I to advise on running NHS clinics!
Important results such as the tumour marker and the liver function results will be sent to my GP next week in a letter (copy to me). But the full set won't be sent out as standard. If I want those I will have to wheedle them out of his secretary.
He gave me the results of my Hep B viral load which was taken last September. The viral load measures the number of copies of the virus floating around in your blood stream. Patients with an active virus typically have 1,000's or even millions of copies. I have exactly 177 apparently! In the 30+ years of having the virus nobody has ever tested my viral load. I wonder why not. Dr S at Macclesfield once told me it was 'undetectable' but all that means is the testing equipment is only sophisticated enough to get down to a certain level. I will always have some virus in my system but it's only possible to measure smaller quantities as the measuring equipment becomes more delicate.
I told Dr Al about my symptoms of aches and pains which have come back after an absence of about a year. He said it sounds like the polymyalgia has flared again, and took an ESR test which measures inflammation in tissue. I'll get the result of that next week and if its not normal then I get the green light to take some low dose steroids again.
Apart from the fact that a 20 minute appointment in Salford takes nearly 5 hours out of my day, it went ok. It was nice to be seen by Dr Al again, as last time it was his registrar Dr B. Dr B is writing up the research article on my case, for publication by the British Medical Journal. But apparently his first draft didnt get an A* in Dr Al's view so he has to do his homework again.
Important results such as the tumour marker and the liver function results will be sent to my GP next week in a letter (copy to me). But the full set won't be sent out as standard. If I want those I will have to wheedle them out of his secretary.
He gave me the results of my Hep B viral load which was taken last September. The viral load measures the number of copies of the virus floating around in your blood stream. Patients with an active virus typically have 1,000's or even millions of copies. I have exactly 177 apparently! In the 30+ years of having the virus nobody has ever tested my viral load. I wonder why not. Dr S at Macclesfield once told me it was 'undetectable' but all that means is the testing equipment is only sophisticated enough to get down to a certain level. I will always have some virus in my system but it's only possible to measure smaller quantities as the measuring equipment becomes more delicate.
I told Dr Al about my symptoms of aches and pains which have come back after an absence of about a year. He said it sounds like the polymyalgia has flared again, and took an ESR test which measures inflammation in tissue. I'll get the result of that next week and if its not normal then I get the green light to take some low dose steroids again.
Apart from the fact that a 20 minute appointment in Salford takes nearly 5 hours out of my day, it went ok. It was nice to be seen by Dr Al again, as last time it was his registrar Dr B. Dr B is writing up the research article on my case, for publication by the British Medical Journal. But apparently his first draft didnt get an A* in Dr Al's view so he has to do his homework again.
Friday, 13 January 2012
Here's to blogging
Last week I met Hannah, who had come across this blog, and as someone also diagnosed with HCC has hopefully found it useful.
Here's to blogging!
Hope your check-up goes well Hannah. Meet up again whenever you want!
Fiona
Here's to blogging!
Hope your check-up goes well Hannah. Meet up again whenever you want!
Fiona
Wednesday, 4 January 2012
Story of a legacy
Browsing iPlayer yesterday I came across a short programme about a young girl, Nicole Dryburgh. Nicole was diagnosed age 11 with a tumour on her spine. Her story is here
http://www.teenagecancertrust.org/get-clued-up/young-peoples-stories/nicole-dryburgh/
She died in 2010 at 21.
I'm not sure why her story was on iPlayer at the end of 2011, but she raised a lot of money for the Teenage Cancer Trust and won many achievement awards.
Not only was she beautiful, but she came across on camera as a very positive and compassionate person, in spite of her circumstances.
Her mother was interviewed talking about her, and it struck me that the mother positively glowed with the memories of her daughter.
It seemed that part of Nicole's legacy was not only to leave behind tangible evidence of herself - she raised over £74,000 for a Teenage Cancer Trust unit at the Royal Marsden Hospital in Surrey and £43,000 to fund ‘Nicole’s Sweet’, a paediatric neuro-rehabilitation suite on Lion Ward at King’s College Hospital - but she left behind extraordinary and happy memories for those who loved her.
I follow a number of cancer blogs, and pop in and out of cancer forums. Many cancer patients use war analogies in their stories. They 'battle' against cancer. They declare confidently they will 'win' over the tumours. They 'fight' for each day, frightened it might be their last. Nicole herself didnt use these words, though after her death her family did. Yes she had been angry in the early stages (she had periods of remission). Instead she described her illness and treatment in a straightforward matter of fact voice. She had wit, she had humour, she had a positive attitude, she was determined.
Fellow blogger Carole http://caroleandcancer.blogspot.com is in a bit of a bleak place at the moment. Diagnosed with stage 3 rectal cancer in April 2010 mets in Carole's spine were then diagnosed in October 2011.
Carole, like Nicole, is fundraising. Carole, like Nicole, has a special way with words. Carole, like Nicole, envelops those around her with warmth and love.
So here's to Carole and the knowledge that through your blog, your input to the cancer forums, your fundraising, there will be always be a right Pain in the Bum legacy nobody will forget!
http://www.teenagecancertrust.org/get-clued-up/young-peoples-stories/nicole-dryburgh/
She died in 2010 at 21.
I'm not sure why her story was on iPlayer at the end of 2011, but she raised a lot of money for the Teenage Cancer Trust and won many achievement awards.
Not only was she beautiful, but she came across on camera as a very positive and compassionate person, in spite of her circumstances.
Her mother was interviewed talking about her, and it struck me that the mother positively glowed with the memories of her daughter.
It seemed that part of Nicole's legacy was not only to leave behind tangible evidence of herself - she raised over £74,000 for a Teenage Cancer Trust unit at the Royal Marsden Hospital in Surrey and £43,000 to fund ‘Nicole’s Sweet’, a paediatric neuro-rehabilitation suite on Lion Ward at King’s College Hospital - but she left behind extraordinary and happy memories for those who loved her.
I follow a number of cancer blogs, and pop in and out of cancer forums. Many cancer patients use war analogies in their stories. They 'battle' against cancer. They declare confidently they will 'win' over the tumours. They 'fight' for each day, frightened it might be their last. Nicole herself didnt use these words, though after her death her family did. Yes she had been angry in the early stages (she had periods of remission). Instead she described her illness and treatment in a straightforward matter of fact voice. She had wit, she had humour, she had a positive attitude, she was determined.
Fellow blogger Carole http://caroleandcancer.blogspot.com is in a bit of a bleak place at the moment. Diagnosed with stage 3 rectal cancer in April 2010 mets in Carole's spine were then diagnosed in October 2011.
Carole, like Nicole, is fundraising. Carole, like Nicole, has a special way with words. Carole, like Nicole, envelops those around her with warmth and love.
So here's to Carole and the knowledge that through your blog, your input to the cancer forums, your fundraising, there will be always be a right Pain in the Bum legacy nobody will forget!
Monday, 2 January 2012
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