"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)

Friday, 30 March 2012

A label

I've found the correct 'label' for the variant of Hepatitis B I now finally know I have.

It's Hepatitis B e Antigen–Negative Active Chronic Hepatitis B.

So now ya know! I'll tell my GP next time I see him. Bet he's never heard of it.

Thursday, 29 March 2012

"You don't need this"

Driving along on the way to my hepatology appointment and what should play on the Editors CD in my car stereo but the track 'Bullets' with the lyric "You don't need this disease" (which by the way they repeat 37 times). This helped with the decision to say to my hepatologist 'Right, what's the plan then'.

My current viral load is 123copies. Normal treatment protocol for Hep B is not to treat until the viral load reaches around 2,000copies per mL. This is for patients with no cirrhosis and no history of HCC. Any measurable viral load is a risk factor for an HCC recurrence after the surgical liver resection I had. And cirrhosis makes me higher risk for HCC.

Opting for treatment under these circumstances was a no-brainer decision.

The possible downside of treatment is the drug side effects. Significant long term ones are kidney damage and osteoporosis. Because they know about these, I will be tested every 3 months to see how my kidneys and bones are coping.

I was asked by a poster on the liver forum "Can you change your decision later?" The answer is No. The drug is a type of anti-viral, or what are called nucleoside analogs. These control viral replication. They don’t eradicate the virus completely. So you have to take them for ever, as if you stop after you have started the virus will start replicate again.

I've the first 3 months supply of Tenofovir ready to start. Just waiting for baseline blood results and a Dexa scan to get a baseline for bone density.

And then we're off....

Saturday, 17 March 2012

The day before Mother's Day

It's Mother's Day in the UK tomorrow, Sunday 18th.

The shops are full of obscenely large quantities of gaudy flower arrangements.

I've just heard the sad news that my dear 'cyber' friend Carole died last night. Surrounded by her family, her husband, her two sons, her parents, her brother and her sister.

Mother's Day will never be the same. As her sister said "she never gave up to cancer. It was just too big for her in the end"

Thanks you for so much Carole. Hope you are at peace.

This credit to Carole was added today by the moderating team on the Cancer Research 'Chat' forum, where Carole was very active and well loved:
Thanks so much Sarah for having kept us updated in the last few weeks when you yourself had so much to deal with. Even though you prepared us well for what was to come and we knew that Carole's days were counted, it is still very much of a shock to everyone. Tributes to Carole are pouring into this thread as I write this which shows just what a wonderful caring woman she was and the countless friends she made here. She posted about 1400 messages on Cancer Chat and was therefore a constant presence here, always keen to help others and be there for everyone. It is hard to imagine the forum without her contributions, the great manner she had with people and her great sense of humour.
As her son wrote in a very moving post in her own blog, "we can take solace in the fact that she is no longer suffering" and that she died peacefully. He also wrote - and I could not put it any better than him - that it is "nice to think she could create some sort of legacy to encourage others to talk openly and help each other, just letting someone else know you are thinking of them or giving them the opportunity to have a rant is a wonderful help. Nobody should have to face these struggles on their own so please help each other."
I will end simply by sharing again Carole's blog which I think is the best tribute to her - an expert and passionate blogger she was - you can read it over and over again here. Even when she was not feeling well at all, she still kept her blog updated until shortly before she went on her final journey and then her son James kept all her followers updated after she moved to the hospice. She called her blog 'What a Pain in the Bum!'and I will add, What a Pain in the Bum that she is no longer with us but I'd like to imagine her resting without any pain in the beautiful Epping Forest Burial Ground, a place she chose because she wanted a place people would look forward to visiting. And part of me would also like to imagine her still blogging to us from wherever she is now.
Carole/ Dizzie you will be deeply missed on
Cancer Chat as well as I am sure everywhere you have been.
We are thinking of all those who got to meet this amazing lady, her husband Rab, her two sons, her lovely sister Sarah and all the other members of her family who must be truly devastated at the moment.

Monday, 12 March 2012

Apologies for silence

To family and friends who check this blog and may be wondering why the long silence, my apologies.

I'm finding it difficult to use 'Blogger' at the moment.
My lovely cyber friend Carole is in the final stages of rectal cancer. Surrounded by her loving family she has maybe days, maybe weeks, nobody knows, in a peaceful hospice.

Carole held my hand as a newbie on cancer support forums, and guided me through the early stages of blogging. Her surgery for Stage 3 cancer was in November 2010, not long after my surgery. Sadly she didnt have my luck going into remission. Spinal mets were diagnosed in October 2011 and by January this year there was further spread in her pelvic area.

Her blog, and her thread on Cancer Chat have many many posts by people who have been touched by her warmth and unique way with words. At the moment things are in limboland, and despite the warm wishes on her blog it distresses me to read it. So sorry while I stay away from blogging for the moment.