If you are squeamish look away now

My Multi Disciplinary Team have decided the best way forward for a diagnosis of liver damage is a fresh liver biopsy (no jokes about onions and gravy please!). So Friday 4th February I have one of these stuck into me and then lie around keeping as still as possible for 6 hours trying not to think about needing to go to the loo.



Anyhoo ... Tuesday 1st I go for a pre-biopsy check. I have my blood group tested in case I need a top-up, a full blood count including platelet level and my clotting rate checked - get the drift of the risks? I plan to ask about having a tumour marker done as if the level has gone up again maybe sticking a needle in isn't such a good idea. And to discuss taking antibiotics to protect my wonky heart valve.

Friday 4th I go in as a day case at 9.30am. The procedure itself takes about 3 seconds, but by the time the radiographer has told me what they are going to do, done it, and told me what they have done guided by ultrasound, more like 30 minutes. Then 6 hours lying completely still for the first hour and staying in bed for the remainder being checked every 1/2 hour for blood pressure changes but allowed to eat and drink, read or doze, whatever takes your fancy.

Back to work today

After 18 weeks, 5 sicknotes and 1 return-to-work interview ..... I managed ...... 2 hours, woo hoo!
If you add on the time to get there and get back again via the station to collect T and the takeaway because I was too tired to cook .... 3 & 1/2 hours.

I went to a client I'd worked with last summer and she seemed pleased to see me again (only she can't see me as she is blind - sorry, a bit sick that!) Despite her having a stroke and me cancer in the meantime we hobbled along nicely. Lots to chat about over a cup of tea, so I didn't have to work very hard.

During the 18 weeks, 5 sicknotes and 1 return-to-work-interview I 'lost' 3 lovely clients which is a shame. One died, went to funeral last week. Very dignified lady, ex-nurse, awarded a medal in the war for not deserting her patients during air raids. One went into residential care - a lovely man with Parkinsons and other complications. He'd been a company director and how sad it was to be reduced to needing help getting out of bed, help in the shower, and other humiliating losses I won't describe. We tackled it by turning the tasks into a huge joke. His wife must have wondered what on earth was going on hearing our irreverent laughter. One is still around but at the moment I'm not on her team as I'm on 'light' duties and she needs help with lifts and hoists.

Had a little zzzzzzzz on the sofa after the takeaway, and feeling ok. More news about something else tomorrow.

Spring?

Went for a walk with T today and saw my first .......

.... of the year. Ahhhh!

Spring must be on its way.

I expect you Southerners are picking daffodils and ironing your shorts. It's still a tad chilly oop north.

As we say "It's the fine rain that gets you wet"
or "We only have 2 seasons: July and winter..."

"The other day I sent my girlfriend a huge pile of snow. I rang her up, I said "Did you get my drift?".

"What happens when it rains cats and dogs? You have to been careful not to step in a poodle".

'Real Story' published 9th Feb 2011

When I submitted my cancer leaflet feedback to the British Liver Trust (5th January post) the Trust sent me a form with guidance on writing a feature called ‘Tell Us Your Story’. Alongside giving them information about my diagnosis, treatment and support is a section I’m encouraged to fill to ‘really' tell your story. This story is to sit alongside the cancer leaflet.
This is the Mark III version after editing (very professionally by Lib, thanks Lib) and quite a bit of a re-write, much of it by T (thanks T).

NOW AT: http://www.britishlivertrust.org.uk/home/the-liver/liver-diseases/liver-cancer/real-story-fionas-story.aspx

There’s an optional section in the Trust form about talking to the media, including local radio or certain magazines such as 'Take A Break'. Alongside articles such as ‘Mosquitoes made me pregnant’ - are you serious???

The other magazine example was 'She'. Now if the deal includes a complete makeover with '50 expert anti-ageing beauty solutions' for accompanying photo, and an entry into 'The Inspiring Women Awards 2010", I might re-consider (only joking!).

Congratulations! You have a diagnosis ... Erm, maybe not ...

Letter from Dr C arrives with the confident words: DIAGNOSIS at the top.
His words in grey, mine in blue. I’ve changed names for confidentiality
The letter is to my GP with a copy to me, to the pathologist and to the surgeon. It starts

Dear Dr M…
Re: Fiona
DIAGNOSIS
Chronic hepatitis B
HBsAg Hepatitis B surface antigen positive
HBeAg Hep B antigen negative
HBeAb Hep B antibody positive
Translation:- I have a long standing hep B infection, that isn’t replicating in the liver cells, that has converted to non-infectious and is doing less damage than it was at the beginning. These tests (above) were also done in 1993 with the same result, which means I’ve had an inactive virus for at least 17 years
Hepatitis B virus PCR negative
This test, done for the first time in 2010 is a sophisticated test looking for a virus DNA blueprint in the blood. I have undetectable levels which confirms an inactive infection with low replication in the liver
Established cirrhosis
So apart from the cirrhosis this diagnosis is good, because it’s full of words like ‘inactive’ and ‘negative’ and ‘undetectable’.
Now we throw in some variables, my questions put to him in December:-
Raised iGg @ 37
Positive SMA 1:800.
Positive LKS
The raised iGg is more than double normal and can indicate autoimmune diseases. However it's also elevated in someone HBsAg positive who has HCC and cirrhosis - which was me when the sample was taken -so could be a red herring. The iGg was also raised in 1993 but no action was taken
The SMA is a positive test for autoimmune …. But can also be raised in cirrhosis.
LKS stands for Liver Kidney Spleen. I think it means they used liver kidney spleen tissue for a technique called ‘indirect immunofluorescence assay (IFA)’ as this is known to be the best type of tissue sampling for finding smooth muscle antibodies.
He carries on:
I reviewed Mrs Onwards and Upwards today in the out-patient clinic.
I addressed several of her questions regarding her underlying condition. She was concerned about the inflammation on her latest specimen. Her biopsies are due to be reviewed by Dr ‘Pathology’ at North Manchester. I suspect the florid activity could have been related to surgery. She does have a positive smooth muscle antibody in titres of 1/800 with positive LKS antibodies and a raised immunoglobulin. IgG was 37. Her ALT has remained normal/mildly elevated in the past. I suspect this may be secondary to her cirrhosis.
She has been complaining of myalgia (muscle pain) and generalised aches and certainly one needs to exclude auto-immune hepatitis (so there may be something else going on) in combination with chronic hepatitis.
I have requested Dr ‘Pathology’ to review the biopsies with regards to Hep B surface antigen and also to comment whether there is interface hepatitis (I think 'interface' means active chronic hepatitis but it’s also a check for primary biliary cirrhosis, another liver disease) or plasma cell infiltrate (don’t know what he’s up to here but may be a test for another liver disease called primary sclerosing cholangitis) Ultimately we will need to consider a liver biopsy to assess this further .
So we don’t really have a diagnosis because although we know what it’s not (Hep B) we now have a list of what it might be – autoimmune, primary biliary cirrhosis, primary sclerosing cholangitis. The British Liver Trust site has a heading ‘Liver Diseases’ with a list of 20 different ones – God help me should we end up working through the list eliminating them one by one!
She is due to have a routine gastroscopy to assess her for varices. She will also have a CT scan in March 2011. She is due to be reviewed by Mr O’Blimey in May 2011.
We will write to her once I have had the biopsies reviewed.

Shuttlingslow

One of my 'creaky' days today but T wisely took me out for a walk in the Peaks. And with a landscape like this (if you are reading this Tony S you will probably recognise it) how can spirits not rise.

I don't have the energy stores to get to the top now, but I can still manage along the valley.

Book recommendations

Writing about books and book clubs in the 10th of January post has triggered some follow up.

Cousin L (thanks L) has sent me a fantastic list from her book club and I've looked again at the most recent list drawn up by mine. We get ours chosen by our County Library book scheme, other groups make their own monthly choice.

In no particular order, and without annotation (its easy to get that off the internet) these are ones I've enjoyed. Some are book club ones, some I'd been lent during recuperation (thanks Adela and Ruth), some are personal choices.:

1. "Suite Francaise" Irene Nemirovsky
2. "The Diving Bell and the Butterfly" Jean-Dominic Bauby
3. "A long long time ago and essentially true" Brigid Pasulka
4. "The Reader" Bernard Schlink
5. "Girl With a Pearl Earring" Tracey Chevalier
6. "Savage Garden" Mark Mills
7. "Northern Lights" trilogy Philip Pullman (includes "Amber Spyglass" & "SubtleKnife)

And in answer to Carole's question. Our current book is "The Book Thief" Markus Zusak. I've already read this and highly recommend it. It's on everybodys book club list!
Here's one I thought of for you Carole. I have a gut feeling you will find this beautifully written. It's called "Blue Sky July" by Nia Wyn. You will feel sad, angry, joyful and inspired in turn.
Lib if your group are all mums, they may be challenged by it too. It caught my attention because of what we had been through with J when he was little, though the author's situation was 10 times more complex. And the title caught my eye because the friend who encouraged me onwards and upwards said it was towards the blue sky.

War is over ... and what have we done

This is a long post, most of it a personal aide-memoire so that I have in writing a summary of my January clinic appointment. I suffer from what hepatitis patients call 'brain fog' when your brain is cosily cuddled by clouds of cotton wool. It feels lovely, but means I have no recall of things that happened yesterday!

Apologies in advance for those whose brains will be hurting by the end of this post.

At my December appointment Dr C’s diagnosis was chronic inactive hepatitis B.
What the pathology report described as ‘florid activity’ he diagnosed as inflammation not unexpected in tissue taken from near a tumour.
Since then he has obtained his own copy of the autoimmune blood test from the Manchester laboratory.
Because of this, and my request that he consider autoimmune, he has asked the hepatobiliary pathologist who took the liver biopsy to look at the tissue again.

He explained to me what he believes is the progression of my hep B.
After infection there is an ‘acute’ phase lasting a few weeks. For some, it's so mild there are no symptoms or perhaps at most vague flu symptoms. So difficult to pinpoint when I was infected as it wasn’t dramatic, nor was I jaundiced.
From the acute infection phase hep B progresses through a clearance phase in which the immune system attempts to eliminate the virus, and on to a phase in which the virus is inactive.

In its attempt to eliminate the virus the immune system goes to war on the hepatitis B virus-infected liver cells. This phase is called the immune clearance phase. The duration and intensity of this attack determine whether you develop cirrhosis.

If the attack is swift and accurate, as in a sniper or expert rifleman, the only damage is slight inflammation.

If the attack is less accurate, say by a cavalry charge where the aim is wayward and the horses hooves batter the liver a bit, the damage is scar tissue (fibrosis).

In my case, the liver was under attack from Dad’s Army, who with dodgy arthritic knees and a few garden implements to beat the liver about a bit, took a long time and caused a lot of collateral damage killing off the virus within the liver, causing cirrhosis.


I was infected by the mid-70’s and inactive by 1993, giving Dads Army 20 years to finish off the virus - plenty of time for tea breaks and Pike’s mum to knit new scarves.

After the virus is cleared the infection enters a dormant phase. Levels of virus become very low, the standard liver blood tests are near normal and few inflamed liver cells are seen on the liver.
This is the phase I’m in BUT the pathology reports inflamed liver cells. Dr C’s double-check is to see if they are viral cells, or cells inflamed by being next to a tumour.

His reluctance to start treating for autoimmune, based on the SMA blood test and the statement ‘florid activity’ is because of the risk. Steroids, the standard treatment for autoimmune, suppress the immune system. That same immune system that used everything in its arsenal to clear the hep B. Suppress the attack and up pops the hep B virus again.

Other things as well as autoimmune can raise the SMA. Cirrhosis is one. I have established cirrhosis.
However, I did ask if he would expect cirrhosis to elevate the level to 800. This high level, plus my symptoms of muscle ache, joint swelling and feeling tired and feverish mean he will investigate autoimmune conditions, not just autoimmune hepatitis.

The length of time it’s taking for the pathologist to get back to him is partly because I’m not an urgent cancer patient.

I’m currently a cirrhosis Child-Pugh A which means I’m still eligible for surgery should it be needed. I want to do all I can to stop the cirrhosis getting worse, tipping me over to B. He said realistically there is not much I can do. I’m already at end-stage, though ‘compensated’ end stage which means my liver is compensating for the damage.

So family, followers and friends. There is no magic pill to make me better, or even to make me ‘feel’ better. What we do now is monitor and aim to prevent complications.

Within the cancer community there are lots of metaphors for waging war – we ‘fight’ cancer; it’s a personal ‘battle’; we talk of ‘conquering’ cancer. The times of surgery and chemo are these times, when we and our medical teams are actively doing something to ‘kill’ this cancer. For a while we are the centre of attention and our lives are busy with trips to appointments, filling in dates in our diaries, knowing the medics are up to date with what’s going on with our insides.
The living in limbo afterwards is mentally harder. There is no action, our security blanket of treatment has gone, we have time to reflect, we have no idea what’s going on inside our bodies, we’ve put down our cancer fighting tools.

And while tomorrow is unsure, we need to make ourselves keep living ...we need to keep moving forward.
Up to now I may have seemed positive, but I think that’s because I had clear challenges and targets.
Now there is ‘nothing to do’, so lots of encouragement to stay active and lots of emotional support to keep going with a positive frame of mind will be gratefully received.

Diary dates
February 1st, Macclesfield: (i) Liver function blood tests to check my albumin and bilirubin are still within Child Pugh A (ii) Full blood count, including a platelet count which helps to predict portal hypertension

February 9th, GP surgery, 10am: AFP tumour marker to check for recurrence of cancer

February 22nd, Macclesfield, 3pm: Pre biopsy blood tests, including clotting and platelet count.

February 25th, Macclesfield, 9.30am: Liver biopsy. Nothing to eat or drink 2 hours before. Bring dressing gown and slippers.

March 3rd, Macclesfield, 1:00pm: (i) CT abdomen scan with contrast. To check for tumours. To check for fluid in the abdomen (ascites). To check blood flow (portal hypertension)
No food for 3 hours before, iodine drink prior to examination, IV iodine for examination. Bring a dressing gown

March 8th, Macclesfield, 5:20pm: Gastroscopy. To check for any varices.

April 5th, Congleton 10:00am: Clinic appt with Dr C to review the above

May, GP surgery (not yet booked): Repeat of February blood tests

May 5th, North Manchester GH, 3:10pm: Clinic appt with O’Blimey to review the above.
Sometime before this (not yet booked). Endoscopy to check for esophegal and gastric varices.

August: Repeat of blood tests

September: Repeat of CT scan

Etc, etc.

If tumour marker rises, add in CT scan of thorax to check for spread to the lungs.
If liver function tests become abnormal, add in Hep B DNA test to check for hep B flare-up

Rollercoaster

This is for 'Running Man' as I can't put pictures in the 'post a comment box'.

You may feel like this at the moment .....







But you will end up here ..... hopefully with me in a cart behind, screaming .........

Appointment cancelled

Hospital called to say Dr C has cancelled his Tuesday clinic as, at short notice, he's got to be the 'on call' doctor. I'm to be rescheduled for Thursday, so not too bad.

Still no letter from him in the post, so I go to the GP and get a photocopy of theirs. The letter is dated 31st December, so my copy must have got lost in a snowdrift. In the letter he confirms he has asked the North Manchester pathologist to 'review your biopsies' though he doesn't say what for or when we might expect results. He'd said he would arrange this when we spoke on 7th December, so it's taking a long time. He writes that he believes the inflammation is 'as expected' in a case of chronic but inactive infection. Hmmm, do you get inflammation without infection? It contradicts the British Liver Trust hepatologist who wrote that if the Hepatitis B was inactive then 'there is another cause of liver inflammation'.

I'm going round in circles, so T has prepared a clear set of notes for me, covering my areas of concern. I'll take it with me and try to stick to what we know about the autoimmune blood test result and not get sidetracked.

Tonight I am off to my monthly Book Club meeting at a friend's house. I say monthly but I have missed the last 4 months. Current book was "American Youth" by Phil LaMarche. An unpleasant story of youth gangs. We don't have to like the books we are given, just review them. J read it and said it was "aw-reet" (Well he is local Cheshire not posh like me!). It has done the job of kick starting him reading again which is good, as he hasn't read a fiction book for about 2 years! He's now reading 'Room' by Emma Donoghue about a boy's day-to-day experience of being held against his will. Probably has some sympathy with the book's character as we pin him down yet again to revise for Friday's Geography AS level. And we have Trainspotting on order as they have read some of it for English A Level. All rather bleak stories. Hope I get a more cheery book tonight!

Warning: Lots of shouting in CAPITAL LETTERS

I'm now definately a nuisance.

At my December 7th clinic appointment (Blog post "Smiles 8, Frowns 2") I spoke to Dr C about the discovery of "persistant florid activity" in my liver. Dr C. felt that the longterm inactive Hep B was the cause of the inflammation. However he did agree to get another look at the biopsy to see if there was evidence of any 'active' hepatitis, such as autoimmune.

Having been promised a letter with the answer once everything was 'open' after Christmas I find after more chasing phone calls this week and a personal visit to the GP surgery today that though the letter was posted on Tuesday 4th it has yet to arrive either with me or at the GP. The GP 'may' get a faxed copy this afternoon, but I'm not allowed to know the content until a doctor has looked at it first. How likely is that on a hectic Friday afternoon and a surgery full of flu patients?

A significant question this letter (now mentally raised to mega importance) should answer is "Could Dr C tell me if the autoimmune blood test analysed 29/JULY/10 was a positive or negative result".

Reaching the end of my patience I decide to do for myself what the GP and/or Dr C could easily have done MONTHS ago (why oh why didn't I do it months ago myself). I ring the Immunology department at Manchester University who ran the test.
How fortunate I happen to have a personal copy of the blood test, conveniently with phone number at the top! Fully expecting to be told they won't discuss results with patients, only with doctors, I'm surprised to be put through to a technician.

I'll try to keep this simple.
This test is to look for evidence of autoimmune hepatitis.
For this test the technician repeatedly dilutes my blood sample until the dilution is so weak he can no longer see antibodies. Imagine putting 10 drops of Ribena in 10ml of water. Held up to the light it looks Ribena colour. Now top the water up to 20ml. The Ribena colour gets weaker but is still blackberry colour. Now top it up to 40ml. It's gone wishywashy pale. Dilute it again to 80ml (that's about 1/8 of a pint). It looks clear now, no sign of Ribena at all.
If the technician puts 10 drops of my blood in solution, dilutes it 30 times and can't see antibodies, it's a negative test. If he puts 10 drops of blood in the same solution and CAN see antibodies, it's a weak-positive test. If he dilutes it to 100times and can still see antibodies, it's definitely positive.
He carried on with my blood sample, continually seeing positive antibodies until he had reached the maximum dilution they can possibly test to in that laboratory. He diluted my sample 800 times and could STILL see antibodies.
"So it's positive" I ask. "Yes", he said, "PARTICULARLY STRONGLY POSITIVE".

So I phone Dr C.s secretary for about the 4th time. I can hear her irritation, as she is on holiday next week and has 1001 things to do.
When I explain I've had this blood test result she says I need to talk to Dr C. asap. Hurrah again for Barbara, as despite my clearly irritating her I get a call from the hospital at 4.30 giving me an appointment next Tuesday 11th (back at my favourite little Congleton outpatients).

On the one hand I am relieved to have an answer to this blood test question that has been hanging over me for 6 months. While at the same time being p***ed off that I waited for someone else to do what I could have done myself 6 months ago. So now I am anxious that I have, for the same 6 months, been left without treatment for something described as 'PARTICULARLY STRONG' and I have to wait a bit more before anything is done about it.

Annoying, Moaning minnie post finished. Thank you for reading this far!

It's past Twelfth Night and the decorations are down

My local hospice has 15 beds and a Day Centre. It costs £6,000 a day.

Each year since 1999 a band of volunteers collects unwanted Christmas trees the weekend after Twelfth Night. East Cheshire Hospice is the sole beneficiary, currently to the tune of £207,000.

Their target this year is to collect and recycle 5000 Christmas trees over the weekend of 8th/9th.

Last year they made a video of the collection http://www.echtrees.org.uk/pages/video
and one shot has them driving down our road collecting trees!

What a positive response

Mid-afternoon I got a lovely email back from the British Liver Trust. I've cut out the paragraphs that refer to editorial changes, but I would like to share the rest:

"Hi Fiona

I hope you had a good Christmas and New Year. Many thanks for looking at the document for us. Your edits have come through just fine.
I’m glad that you feel the document covers all the key elements. All the points you raise are very valid and we will certainly take them onboard.

We’d be very happy to feature your story on the website. I’ve attached a form with a few questions which it would be helpful if you could cover when writing up your story.

Occasionally we are contacted by the media looking for people who will be happy to share their stories. There are a couple of options on the form if you would be happy to be involved in this way. If not, then please just note that, and we can keep your story just to the Trust website.

Many thanks for your help.
Best wishes
H

British Liver Trust guide

I've finished my review of the new edition of the British Liver Trust's liver cancer guide and returned it to their Health Information Communications Manager.

I'll post a link to it when they upload the new version onto their website.

Sleeping off New Year Celebrations?

T saw this fox asleep in the open at 3 o'clock in the afternoon on New Years Day. It's in a natural sleeping position for a fox (we think it looks like a youngster), but .....

if you look at the photo below (without zoom), is it in a normal sleeping habitat?

Wouldn't IN the gorse have been warmer and safer!

Since the snow and ice melted T has been making sure I go for a walk as often as possible. So today we went back to see if the fox was still there. The fox was gone, so it wasn't dead, just dead tired?!