Is there anything to treat?

Saw my hepatologist yesterday.

He'd had time to mull over his original treatment plan for his diagnosis of ‘probable’ autoimmune hepatitis alongside the chronic inactive Hep B. He'd also had time to do what I did which is research existing/previous cases. And like me, only came up with 2 documented. So it's rare to have co-infection of Hep B and Autoimmune.

He spoke to his ex-boss and his mentor, both at the Freeman Liver Unit in Newcastle and between them they came up with 2 options:
1) no treatment but monitor more closely than I am being at the mo;
2) treat with a combination of drugs for the low level inflammation and some more drugs to protect againt the risk of the Hep B reactivating.

They've gone over both the 1st and 2nd biopsy, and all the blood tests, and tissue slides and it's still not possible to say anything more definite than there is some 'autoimmune' activity but not very much and difficult to quantify if it is stable or increasing.

Tom asked if either treatment plan would give any protection against the cancer recurring, and I asked if either would give a better life expectancy.
Heppy doc said neither would improve the statistics of a de-novo (new) tumour, and it wasn’t possible to say re the life expectancy.

So I opted for the choice that gives me the better current quality of life, which is option (1) as there will be side effects using immunosuppressants etc long term.

The good news for me is that heppy doc says my cirrhosis is very early stage and that my liver is performing well. O'Blimey the surgeon (who is the only one to have seen the state of my liver first-hand) had been somewhat gloomy and I'd assumed I was worse than it seems I am.

Heppy doc thinks that although I’m chronic inactive hep B I probably have a history of periodic reactivation that went unnoticed due to lack of monitoring. He plans to monitor my bloods monthly and have me back in clinic in 3 months. The idea is to build up a picture of everything that tracks the inflammation and spot immediately any deviation from my current 'normal'. The way things are at the moment my cirrhosis should remain fairly stable, but a flare would accelerate it.

As always when faced with a new path to follow I spend a lot of time mulling it over, consequently I'm a bit tired today. Also I had a long work shift this morning and am out at a book club meeting tonight. So I'm off to pull the duvet over my head for a few hours.

Life expectancy

Saw my GP today.

Asked for his advice on the different diagnosis and treatment plans on the table.

The 'do no treatment but watch for and deal with future symptoms and side effects of worsening liver damage' option versus the 'make an educated guess as to the cause and treat the liver inflammation with lifelong medication plus follow up checks to monitor any effect' option.

His advice was add to the mix your age, your current state of health, your personal circumstances and your family situation and ask 'which of these options gives me the best life expectancy'.

Choose that.

Obvious really.

Even the best made plans

This is the route between home and the North Manchester hospital where my liver surgeon sees me once every 6 months. Part of the drive is through busy built up areas chokka block with traffic most of the day, so it can take up to 2 hours despite the AArouteplanner optimistically estimating 38 minutes!

Normal clinic procedure would be the patient returning to NM hospital about a week prior to clinic for a CT scan and bloods, so that the surgeon gets to see them before pronouncing his verdict on my health face to face.

Due to kind hearted Macmillan Nurse Clare, the team decided O'Blimey's buddy Dr S, my GI at Macclesfield, could be trusted to organize the CT and the bloods. As you see from the map the distance between the word 'Macclesfield' and the green flag of home is conveniently tiny. So tiny that I'm fine to get myself there and back for the CT without needing support. The IV part of the procedure tends to leave me a bit shaky and certainly not up to a 2 hour drive on my own. The results of the CT and bloods to then be sent electronically/by courier/by carrier pigeon *(delete as applicable) to NM hospital.

Dr S was highly organized and carefully booked my CT for 3rd March - PLENTY of time - 2 months - to get the resulting image and report snail-mailed 26.8miles??

Fail.

At least I'd taken a copy of the summarized report. And a copy of my AFP blood test result. I almost offered to hole punch them and file them in my file!

So he asked how I was and I said the results suggested I was fine thanks and he said bye see you in 6 months. About 5 minutes out of the 5 hours (including the late running of the clinic).

Still in remission

AFP blood test results are back. This is my 3rd cancer tumour marker test since surgery. Still at 1, well within the 'normal' range of 0-10.

Great news.

Does bad luck come in 3's

Started the day with one of my recurring sinus headaches and a spontaneous nosebleed. Not sure why these happen, as my clotting factor is fine.

Things improved with a walk to see this lovely bluebell wood.


On return, slammed my finger in the car door - ow ouch! Steri-strips, paracetamol, arnica, ice pack and a cuppa tea (if only all our ills could be cured with a cuppa!) sorted that, but I'm fumbly typing with one hand.

For my finale, spilt a packet of sugar on the kitchen floor. Scrunch, crackle, crunch as we walk on it.

That's my 3 so should be safe now.

Happy birthday to me

AFP time again

Nearly 11 months since the start of this blog. Nearly 3 months since my previous AFP tumour marker test. Where has the time gone?

A little early taking the test this time, but I have my 6 month cancer check-up with the surgical team at the beginning of May. What with Easter and then 'Will 'n Kate's' Bank Holiday I'm allowing plenty of time for these results to come back in time for Mr O'Blimey's appointment.

Hope everyone is enjoying the gorgeous sunshine. I have a bottle of 'Liquid Sunshine' in the fridge with a Vitamin D3 supplement in it. Research suggests that many of us in the northern hemisphere (and those in the southern who apply sunscreen) are deficient in Vitamin D.
I've been taking twice the recommended daily allowance for a while now and got my blood test back today. I'm 'normal', but low normal. Looks like I can up my daily intake again to more like x4 the RDA and still be 'normal'.
Anyone out there feeling a bit tired, or achey, for no particular reason, try taking extra Vit D3 and I'm pretty sure you will feel better.

Another scan

I had a Dexa scan today. It looks like this:

Something to do with checking my bone density. The machine is very expensive and is in our private BUPA hospital. A deal is done between the NHS and BUPA to pay for the scan.

After lunch took J for a first appointment to a new homeopath. For his eczema. Which hadn't been too bad for a long time but flared up on his arms and neck when he got taken surprise by sunburn in March. He has 2 pillules and instructions not to use mint toothpaste for a week (mint destroys the delicate balance of the remedy) so it's fennel toothpaste instead - yuk. Also no caffeine.

See saw

This is for my Nomad forum friend Ceesaw. Thanks for bringing some much needed clarity to my state of indecision. You can never been down for long with a see-saw or a Ceesaw.

Looking for clues

Letter today from Dr Al, the heppy doc at Salford.

Reassuringly long, detailed and thorough.

His conclusion:
"It is difficult to judge exactly what is going on"
"I am a bit reluctant to start treatment at this stage"
"I would like to look again at both biopsies from the cancer resection and the histology from February to look for further clues"
"I don't think we have all the information needed to make a decision and would like to discuss further at our next MDT meeting"

My surgery

..... was at the hospital featured in this Channel 4 'Dispatches' programme

www.channel4.com/programmes/dispatches/episode-guide/series-88/episode-1

Ain't no maybe

The more medics that get involved the more opinions there are!

Hep B has a definitive set of blood tests and definite look to tissue cells under a microscope.
There's no doubt that I do have hep B viral cells in my liver.

There's also no doubt that I have white blood cells actively bashing something in my liver.

Where the doubt comes in is what are they bashing?

Are they encircling the remaining hep B viral cells to stop them replicating and escaping back into my blood stream.
Or are they bashing an active autoimmune virus.

Unfortunately there is no definitive blood test for autoimmune. Its a collection of jigsaw pieces and an educated guess!
My GP cousin made an educated guess last November.
So did a British Liver Trust hepatologist.

So at the moment its 3-1 in favour of autoimmune.
4-1 if you count my gut feeling and insistence on the second biopsy.

I found some guidelines on the internet published by the American Association for the Study of Liver Disease and I score 14/17 or a 'Probable' diagnosis of autoimmune.
Having concurrent Hep B is very rare and makes it impossible to make 'Definite' diagnosis of autoimmune.

Should I start lifetime treatment, based on a rare probable?
Whether I do or dont, there will always be some white blood cell activity in my liver encircling the remaining Hep B cells, and slowly slowly progressing the cirrhosis.

Disagreement

Saw Dr S in clinic yesterday.
He disagrees with Dr Al's diagnosis.

Dr S diagnosis is inactive Hep B with active polymyalgia
Dr Al diagnosis is inactive Hep B with active autoimmune hepatitis

Dr S treatment is no treatment for the Hep B and treatment if required for the myalgia
Dr Al treatment is suppress the Hep B while treating the autoimmune.

How do you get two consultants to agree?
Put them in a room with my GP as referee and let them thrash it out til they come to a consensus?

Fifteen

I've just typed up my scribbled note which listed the tests ordered by Dr Al on Monday. I want to take the list to my clinic appointment with Dr S tomorrow. There are FIFTEEN! No wonder my veins were sore.

For Steve

This is Patterdale in the Lake District last week, in between April showers.

I'm putting this on my blog for Steve, one of my followers, who is just over half way through his post surgery chemo for rectal cancer. Now that it's April May won't seem so far away.

Steve this is to cheer you up as I know you like photos of lil ol' England!

T took the photo whilst supervising a group of Undergrads who are there learning practical, in the field, surveying. He's gone back again today, and goes a 3rd time next week. There are so many students they have to do it in shifts

Dr Al drops a bombshell

Those who have followed my blog through 2010 may remember that in November I was asking for help confirming what I thought might be a diagnosis of autoimmune hepatitis. A British Liver Trust hepatologist and my GP cousin came to my aid with a yes, the phrase ’persistent florid activity’ in my first biopsy report could be suggestive of autoimmune.

In December I saw Dr S in clinic, and voiced concern over my continuing fatigue, aches, pains and occasional feverishness. I’d made notes about autoimmune and highlighted some of my blood tests. On my blog of 7th Dec I wrote "We went through my Hepatitis blood tests and he looked at the notes I’d made about autoimmune. He still feels that Hep B is the most likely cause of all the problems, including the persistent inflammation".

He ordered a second biopsy, the one I had in February. This was discussed at the medical team meeting on 9th March. I scrounged the report from the GP last Friday and it was the reason for today’s appointment with Dr Al, the new hepatologist at Salford.

He read the reports and underlined bits, so I asked him what he was underlining. He said my history, including the speedy response to steroids plus the biopsy evidence of inflammation in the liver is suggestive of autoimmune hepatitis, and that was why I was there.

That left me speechless! I’d put autoimmune to the back of my mind and had been told by O’Blimey’s secretary that the referral was for cirrhosis.

Dr Al took another bucket load of blood tests – just to be doubly, trebly sure. I’ve had about 8 vials taken today, as I’d been to the GP in the morning to have Vit D and iron levels checked. Sore arms – argh!

It’s back to see him in a month to get the results and confirm treatment.

Co-infection with autoimmune and viral hepatitis is tricky. Standard treatment for autoimmune is immunosuppressants – just the ticket for bringing those pesky little hep B cells trapped in my liver back to life . Dr Al’s method is to give me an anti-viral to keep the hep B down, at the same time giving me immunosuppressants to treat the autoimmune. For life – b**ger.

The good news is, yes there is good news, that Dr Al doesn’t think the liver damage is too bad and that treating the autoimmune will stop its progress. It’s the Hep B, he thinks, that triggered the cancer.

I'm a 'Silent Witness' fan

I've got as far as I can translating my liver biopsy pathology report. I'm amazed how much information can be got from a tiny sliver about the length of your little fingernail (10mm).

First; what they didn't find. The biopsy ruled out 9 different things. Did that mean 9 tests on this sliver?

It ruled out 'mass cell death' - that's got to be good!
It ruled out in 3 different ways evidence of pre-malignancy or abnormal cells suggestive of HCC cancer.
It ruled out iron overload (common in liver disease)
It ruled out Wilson's disease and primary biliary cirrhosis, 2 other forms of liver disease
It ruled out choleastis which is a blockage of the bile ducts

Second; what it did find.

It found evidence of cirrhosis - no surprises there - and categorised it as 'moderate' disease progression, in most but not all sections.
It went on to stage the cirrhosis by 4 different scores for inflammation.
I won't categorise the types of inflammation as they are gobbledygook, but think of it as 4 exam papers where the marks total 18, but you want a low not high score. I score 2/4; 0/6; 2/4 and 3/4 which totalled 7/18.
My guess is that when you reach 18/18 your liver is a gonner.
It found evidence of bile duct destruction (you need bile to digest food) which is reflected in my 3 out of 4 score, above.
It found evidence that the liver was having trouble digesting fats.
The above 2 findings re-inforce my belief in a healthy, low fat, easy to digest diet.
It found 'patchy positive' evidence of hepatitis surface antigen HBsAg - this is the marker that says 'this person has or had hepatitis B'.

What will be significant, is if the tissue tells whether the hepatitis is ACTIVE or INACTIVE. I've not fully understood this.

The good news is:- there is no evidence of a cell called a 'ground glass' cell (because of the way it looks). The presence of ground glass cells says WARNING: acute infection.
There is 'occasional' or 'patchy' evidence of various white blood cells. White blood cells are part of our immune system, and get busy when there are bugs invading us. Finding white blood cells in my liver might mean they are the remnants of Dads Army (see post 'War is Over') still knocking out any stragglers of hep B. Or it might mean they are attacking a new uprising. I dont know and it's on my list of questions for the hepatologist on Monday.

The good news (I think) is there is no evidence of something called 'granuloma' which is when the immune system encircles its enemy. Think John Wayne and a wagon train being encircled by indians.

Summary: Question to ask hepatologist - is the evidence of hep B in my liver cells suggestive of active or inactive hepatitis.
If the answer is inactive, good, I guess we continue to monitor.
If the answer is active, the next question will be 'what are we going to do about it before it makes the cirrhosis worse'.

Reason to become a donor - No 2

http://news.bbc.co.uk/1/hi/england/8141459.stm

April Fool was on me

Back in November last year I was hunting a hepatologist. Ended up carrying on with Dr S, my GP and the surgical team.

Now that the February liver biopsy report (more on this in another post) has been looked at by the MultiDisciplinaryTeam responsible for my care, the decision has been made to refer me to a hepatologist - AT LAST.

A new clinic has opened at Salford Royal hospital, which is about 20 miles away.
It's led by a hepatologist transferred from the Freeman Hospital in Newcastle, a specialist liver transplant unit.
I'm hopeful he brings with him expert knowledge and it's a joint post with North Manchester hospital where my surgical team and the MDT team are based.

The appointment came as a shock. The MDT met and made this referral on March 9th, but forgot to tell me. Hey ho, why should I presume I matter!
A Salford hospital appointment lady rang out of the blue on Friday 1st April to check I was available on Monday 4th. April Fool of course.

Me: 'appointment, what appointment? You must have the wrong patient'
Her: 'Can I check your date of birth, yes that's correct'
Me: 'appointment, what for?'
Me: Panic - do I have to go to Salford for the second attempt at the endoscopy? Oh no, I don't want to do that.
Me: 'Who made the appointment?'
Her: 'Mr O'Blimey'
The fog starts to clear and I call his secretary, who explains. Phew.

I still don't have the Biopsy report, or the CT report, and would very much like to be up-to-date with myself (!) before I see this new guy. Hence my rush to the GP and the secretaries, yet again, coming up trumps by printing everything off for me, including a copy of the referral letter I never got.

These ladies are due some Easter egg treats.

CT result

After 4 weeks of no news I got frustrated with waiting, so got the report from my GP.

"There is no evidence of hepatocellular carcinoma" - Hurray

"Lung bases clear" - Hurray hurray

"No evidence of renal obstruction. Bone review negative" - Hurray hurray hurray

PS I also got the biopsy report, but that is 7 paragraphs of scientific and medical jargon which will take me all weekend to translate. However, the last line says "appearance is not considered diagnostic of autoimmune hepatitis" - cautious hurray.

Reason to become a donor - No 1.

Three people die in the UK every day because not enough organs are donated.

Last 5 days

Five days since my last post. Little change healthwise. The last time I spoke to Dr S he said he would cancel my clinic appointment due 5th April and instead write to me with the results of the biopsy (done 25th Feb) and CT scan (done 3rd March). By 22nd March I'd heard nothing, so wrote to him instead, asking that he enclose a copy of the biopsy report and a copy of the CT scan report with his letter. Surprise surprise, 3 days later a new clinic appointment arrives in the post, booked for 8th April.

I've put on a couple of lbs weight while trying to stick to mainly 'mediterranean' foods. I've only managed one walk and had a few very tired days when I've had to go to bed for a few hours. I've worked more and done extra driving, so that might be causing the fatigue.
Monday I did 2 shifts back to back, covering for a colleague with a medical appointment. The second shift was with a favourite client, a 97 year old lady who I worked with before for 18 months but then 'lost' while off sick. It was lovely to be with her again and a neighbour made a point of stopping to congratulate me on making it back, which was nice.
Wednesday and Thursday I did routine shifts. My Thursday client insists we sit and chat over a cuppa and a cake, usually a cream cake. As she is blind I can serve myself a tiny morsel without her noticing, as cream or high fat cakes are off my menu.
J had a mock English AS level exam.

The Spring sunshine has prompted me into housework and window cleaning away the winter filth, though T has done the first weeding, lawn mowing and vegetable plot digging of the season.

Sister-in-law came over from Yorkshire for the day on Friday, which was lovely. She and I had a pub lunch but I excused myself from the 6 mile walk that followed with T.
J came home early from 6th form with a nasty flare up of eczema, so whizzed him down to the doctors for the end of Friday surgery. A course of antibiotics and some fresh steroid cream is beginning to calm things down. He's now £98 poorer, having bought a ticket for Leeds Festival, and is looking for a job!
Saturday was our 29th wedding anniversary.
Saturday and Sunday I worked shifts. A new client, currently struggling with sudden hearing loss. It takes 10-15 minutes to get into the house, as he can't hear the door or the phone. The neighbours must think me mad, knocking on the window and flapping my arms to attract his attention! I do have key access, but I think I would terrify him suddenly appearing in the room. It's slow work communicating by writing everything down or using signs.
British Summer time and clock changes confuse the older clients and I have to work out fast how to change their digital clocks, heating systems, microwaves and anthing else with an electronic timer!

Oh, and the water went off again today so I looked back through the blog and it last went off 7th November.

This time it's personal

Since my return to work on 27th January I've been slowly adding clients and hours. I'm now visiting one client each day on Mondays, Tuesdays, Wednesdays, Thursdays and Sunday. Although the shifts are no more than 2 hours, with the driving to and fro I'm probably working around 10 hours, which pathetic though it sounds I sense is now my limit.

Physically it's slightly easier than before, as my employer has been careful to assign me jobs that don't need manual handling or heavyweight household tasks. Emotionally I'm finding it harder than before because of the nature of the clients health. Alongside age related dementia (which I dont find a problem) I've ironically been allocated cancer patients so this time round it's more personal!

Stars and sparkles

"Tonight all, I'm going to be 'reviewing Burnt Shadows by Kamila Shamsie."

Our monthly Book Club meeting is at my house this evening. Better tidy up. There's enough food debris under the sofa seat cushions for an army of mice and what I find on the floor under the sofa itself is indescribable. OMG there are dust cobwebs drifting across the ceiling. 2 of the ladies have dust allergies and it's embarassing if it's your house that makes them sneeze! Anyone else bought these magic cleaning e-cloths that claim 'perfect cleaning with just water'. Why use magic e-cloth? It will save you time, money (at £5 a cloth??) and give better results with a sparkling smear free finish. I'm taken in by this vision of sparkling smear free windows letting in the sparkling Spring sun. They forget to add that you still need someone with elbow grease. Better wait for my servants to get home from school/work.

The book we've all read moves from Nagasaki 1945 to Delhi and Indian independence and partition, to Karachi, to Pakistani-Afghan training camps and thence to New York after the 9/11 attacks ending with a scene at Guantánamo Bay. With the current affairs in Japan no doubt tonight will include some debate about the nuclear industry.

Next month's book is "The Anatomy of Ghosts" by Andrew Taylor.

PS. 9 out of the 10 book club ladies came, an excellent turnout. Lynette I hope your husband has forgiven you for forgetting it was his birthday the same day! Oh, and nobody sneezed.

Weight

J and I are both trying to put on a bit of weight.

He's 5ft 10" and was down to 8 stone 7lbs after half-term. This was caused by lying in bed until lunchtime, thereby missing breakfast, and then lying on the sofa for most of the day in a teenage-sort-of-way instead of getting meals from the kitchen. Since then he has been force feeding himself currys and pizzas and fruit crumbles and donuts and all sorts of pretty unhealthy stuff (no fruit crumble does NOT count as one of your 5-a-day, nor do the tomatoes on a pizza). After 3 weeks of such hardship (not) he is now 9st.
I'm 5ft 6" and 8st 12lbs. I can eat vegetable currys and tiny bits of pizza but fruit crumbles and donuts are a no no. I cant see pictures of them in my Mediterranean pyramid. After 3 weeks of grains and fruit and veg and rye bread I've put on 1/2 lb - yay!

My big fat Greek diet

I've never had any professional dietary or nutrition advice. When the cirrhosis was confirmed, my surgical team just advised 'eat a healthy diet' (do we all have the same concept of what that is?). When I asked my GP for a referral to a dietician he said 'there won't be anyone with that level of speciality at the local NHS hospital'. So that was that.

Left to myself I researched a bit, and asked around a bit. The majority of cirrhotic patients on the hepatitis forums are in the same boat. No advice and making it up as they go along. The consensus seems to be: frequent small meals and snacks instead of 2 or 3 large meals. Plenty of low GI carbohydrates, plenty of fruit and veg, protein mainly from non red meat sources, low salt, not too much saturated fat. Pretty much fits the Mediterranean way of eating.


Anybody with tasty recipes that dont need more than 5 or 6 ingredients, have protein from mainly non animal sources and around 20 mins preparation/cooking time, please send. I get peckish but quickly bored in the kitchen!
By coincidence I've been asked to help on a second British Liver Trust leaflet. This time their 'diet and liver disease' one.

On the health front:
The biopsy results are back but have been passed on to a hepatologist for a second opinion. I've been told verbally that they confirm chronic Hepatitis B and established cirrhosis. Nothing we didnt know already. The second opinion is to look for evidence of active hepatitis.
The CT scan was 2 weeks ago, but not heard anything on that. Probably give it another week before I ring to check.
The gastroscopy I have to wait for a new appointment through the post.
My GP is writing to the consultant to get his opinion on the use of steroids should I have a myalgia flare. He's also telling him about my anxiety over the gastroscopy to see if they will consider a general anaesthetic.
He's ordered another complete set of blood tests (to be done on March 29th) including iron (with liver disease you can store too much) and Vitamin D3 which I'm currently taking as a supplement.

Homer Simpson yellow

Other bloggers are familiar with the sometimes surprising comments made by members of our medical teams.
NB: Carole:- This comes nowhere near the if-you-don't-laugh-you'd-cry level of your "Hello...where is the wound on your finger?" nurse. For those not in the know this will explain http://caroleandcancer.blogspot.com/2011/02/just-quick-rant.html

For yesterdays (non)procedure I'd been sent a pre-appointment questionnaire covering current state of health, medical history (am I likely to have a heart attack or go into a diabetic coma), allergies, current medications, etc. You give this to the clerking-in nurse, and then she takes out her own sheet and asks you the same questions all over again (Why?) She asks if I understand what procedure I'm in for. I say yes, I've got cirrhosis of the liver and it's to check for possible esophageal varices. She looks at me quizzically and says 'you don't look like a drinker'. Then points at a Sharps bin (Carole knows about these too) and says 'most of our cirrhosis patients look more that colour'

Sigh.
I should have taken in that British Liver Trust leaflet. The one that lists the 19 different liver diseases, of which alcoholic liver disease is but 1/19th of the sum. The one that explains people at risk of cirrhosis are not just those who drink but those who have any long-term liver infection; those who have an inherited liver disease, such as haemochromatosis; those who have an immune system problem that leads to liver disease and those with a fatty liver.

PS. Despite the procedure failing, I can't fault the professional, patient and sympathetic treatment by the specialist nurse and her assistants.
Today Dr S rang me to say I would be booked in for a second attempt and this time he would do it. Also he has the results of the biopsy but has asked for yet another opinion from a hepatologist.

Procedure failed

Booked for a gastroscopy today, to check for any potential problems with leaky internal blood vessels - a common side effect of cirrhosis.
I've never been good at the dentist probing the back of my mouth. I was also unable to tolerate the naso-gastric (or NG) tube after my liver resection surgery.
So I was pessimistic about the success of this procedure, which involves a tube the thickness of a biro down your throat and into your stomach. I had a long chat with the endoscopy nurse.
We decided to go for it on the understanding that she would stop if it became clear I was distressed. Into my veins went a nice big dose of midazolam sedative and I drifted off to sleep. The last I remember of a normally 5-10 minute procedure was the teeth-guard about to go in.
45 mins later I wake up back on the ward to find they had been totally unable to intubate me. Despite being completely out of it on the drugs I had reacted in some way that they got no further than my mouth, let alone my throat or oesophagus. Hope I didn't swear or hit anyone! I don't know, because the amnesiac effect of the drug means I have no recollection at all.

My notes now say 'Mrs S was unable to tolerate the procedure. For discussion at HpB MDT meeting tomorrow with scan and biopsy results'. So, I don't know where we go from here. It's possible another scan instead of the endoscopy. I should get a call Wednesday afternoon.

Back home. I've eaten nothing since 9pm Monday and nothing to drink since 11am today so I'm starving and thirsty. Time to refuel. Pancake day.

Clues

This post links to:
http://stevechamberlin.blogspot.com/2011/02/i-get-by-with-little-help-from-my.html

T & I used to go to festivals, not music festivals but orienteering festivals. In 1983 our then 'club' was responsible for the car parking of an annual international event called the JK or Jan Kjellstrom http://www.jk2010.co.uk. Around 4,000 runners attend this most years. Here is a little yellow VW at the start of the day.

As a student I also use to drive one of these (below)for the university team. BUSF stands for British Universities Sports Federation. They had an annual event too.
That's me! And T peeking out of the back.

Transplant man

Transplant man has been allowed home 24 days after receiving his new liver.

Diary
After last weeks 'fasting' day for the biopsy, and this week's 'fasting' morning for the CT I've lost 2 lbs in weight. I'll have to pig out over the next few days to regain the lost lbs as I have another 'fasting' day next week when it's Nil by Mouth on Tuesday.
1 1/2 hour walk with K and Basil-the-dog

CT scan

Six-monthly CT scan today as part of the ongoing monitoring for cancer recurrence. A relief to find I only have to drink water this time, not the delightful anise flavoured cocktail from previous scans. I still have an IV injection of the stuff, but can pack away the swizzel stick, ice and slice of lemon for another 6 months.

Everything goes ok apart from (1) first radiographer can't get IV in so second radiographer tries on my other arm. Pincushion time. And (2) for a few minutes after the IV hits the back of my throat my mouth, tongue and throat go fuzzy and tingly which is disconcerting as a classic sign of early allergic reaction. Once the IV stops flowing it eases a little, and with plenty of fluids after I feel ok again. Last time I had an upset tum, this time tingles. Hope I'm not building up an allergy to the stuff as this is on repeat twice yearly for the indefinite future. 2 weeks for the results.

New liver cancer leaflet

The British Liver Trust has put the new liver cancer leaflet that I helped review on their website at
http://www.britishlivertrust.org.uk/home/the-liver/liver-diseases/liver-cancer.aspx

Once on the site you can click on 'Download Liver Cancer LCZ 0311.pdf' to view.

It's even in one of my favourite colours!

They've kindly sent me multiple copies and some other leaflets to take to my GP surgery.

Tuesday
Cleaned out woodburner.
Spent some time squished behind the TV cabinet sorting out a tangle of plugs and cables. TV plug, aerial cable, freeview box plug, DVD plug, CD plug, ipod docking plug, Xbox plug. Abdomen a bit sore for a while later, but not too bad and no stiffness

X marks the spot

Took the biopsy needle site dressing off while having a soak in the bath. First reaction was eek what a nasty purply bruised mess. Then realised it was a purply felt pen X done by the radiographer as a guide. Doh!

Stiffness diary.
No tablets now for 5 days.
Friday: Laying around for 6 hours and being brought meals to my bed = no stiffness!
Saturday; Feeling rough and headachey. Slight stiffness in the knees
Sunday: Feeling better. No stiffness apart from legs late evening after sitting on the sofa too long.
Monday: Up early for work shift. No problem. No stiffness. Short walk in the afternoon including some hilly bits. No stiffness later.

Ow, ouch, zzzzzz

Friday was biopsy day. Nil by mouth from Thursday night, procedure at 10am.
Reported to ultrasound department at Macclesfield for 9.30. Change into gown and, most important, final toilet visit!
Tiny room crammed with trolley bed, machine, consultant radiographer, second doctor 'observing', and department radiographer. Almost total darkness (so the screen is brighter) makes it bit scary! I still haven't been taken through the consent form but the radiographer insists that what he is about to tell me is far more important than anything on the form, and makes me extra nervous by telling me the procedure is my choice and all the things that could go wrong. He gets to the 'might need surgery to repair' bit so I ask if that's done at Macc and he says no, North Manchester. Hmmmm. 'I can tell you're nervous' he says. 'Too right, mate'.

So we go through 20 minutes or so of him finding the best spot and me holding my breath on demand. Then it's local anaesthetic time. Three jabs, each going deeper in, and the 2nd has me going ow, ouch (hence the 3rd!). He tells me off for flinching and I'm thinking well you see what it feels like to have a needle like that into your liver mate. Then quick tugging sensation and it's all done.
Only not quite - 'I'd like to do a second' he says. 'Oh sh*t', says I, out loud. How good is the sample you have? 85% says he. Good enough for me, says me, thinking I'm not doubling the risk of a 1 1/2 hr trip to North Manchester while I bleed out in the ambulance thanks, for the sake of that last 15%.

Off we go on the trolley. It's impossible to get your bearings staring at the ceiling but I do notice it's up in the lift and that the ceiling tiles are filthy. I ask the trolley man which Ward, and he apologises it's wherever there is a spare bed. Turns out I'm on the 'old lady' ward and he was embarrassed to have me think he was implying I'm shunted there purely on age grounds!

I think some of the local anaesthetic has found its way round my system, as I feel nicely dozey by now and ready for some zzzzzzz
I'm supposed to have blood pressure and observations every 15 minutes but 45 go by with not so much as a 'hello'. So press my buzzer. They have my name on their white board, and my notes, but no idea where I magically appeared from or what they are supposed to do! I explain I should have observations every 15 mins for the 1st hour, every 30 mins for the next 2 hours, 1 hourly for 2 hours and then 2 hourly til discharge. Anyway, sister devises her own plan which is 1/2 hourly the whole time! Who needs silly old nursing guidelines?

I ask about fluids, as I've been without for 12 hours now and feeling dehydrated. Answer comes back no food or drink til you go home - whaat? As my BP slowly drops due to dehydration and a headache starts (I'm pretty sure its lack of fluid not an internal bleed as I have no pain or even the tiniest discomfort - radiographer must have picked an ideal spot after all) I sneak drinks from the bottle I brought and start to feel better. I also sneak nibbles on a few raisins.
Downside of drinking again is the need for the loo and it's impossible to deal properly with that lying down!

Dr S comes to see me, which is a nice surprise. I ask him about post procedure and he says I can get up at 4pm and eat and drink and go home - yipeee.
4pm visit to the loo makes the whole world in general a much nicer place. Now I have to wait for hospital tea-time which is 5.30. Under cover of my book I eat the sandwich I had brought in, and polish off the rest of my water. Tea is a 3-course NHS meal - actually it was ok. And then I can go. I dont have to be officially discharged as I was never officially admitted. I realise I never had a wrist band or any ID.

Next on the list is 6-monthly CT on Thursday next week. This is where you get to drink a gallon of Pernod flavoured iodine before the procedure followed by feeling as sick as if you had drunk a gallon of Pernod!

Now the going gets tough

I stopped the anti-inflammatories yesterday. The inflammation levels from the biopsy tomorrow need to be unaffected by them. Also the plan was to take them for a week and the week was up. Then check on blood results (which I have) and then see how long I can manage without the medication before things get unbearable. It makes sense to abstain for a week before going back to Dr L as repeat blood tests will see if I revert negatively without the medication as quickly as I responded positively to it.

Problem is, Doctor L is predictably booked up and can't see me for 2 weeks.
OK I managed for 7 months without any, but now I've had the benefit of less pain and more mobility it's going to be tough mentally to go backwards even knowing I can just about cope physically.

10.45pm: Going to bed. Creeping around like an arthritic cripple! Legs have been iffy all day and now I can only crawl upstairs. Arms and shoulders are going. Disconcerting is the effect on my throat and neck - lots of muscles in your neck apparently. Nil by mouth now until after the biopsy. Nite nite.

Positive blood test results

Picked up my set of results from the pre-biopsy bloods taken yesterday. They all look fine for the scheduled biopsy on Friday.

They also look positive after a week on low dose anti-inflammatory meds. My paranoia about jaundice is totally unfounded. Bilirubin has dropped and is well within normal levels.
Something called alanine aminotransferase or ALT has been consistently high since tests were started last June. When the liver is damaged it releases ALT into the bloodstream, which makes levels go up. I'd been advised by the consultant that mine will always be high because of the cirrhosis damage. However, after a week of the meds, my level has gone from a high of 84 down to 35 where the laboratory's 'normal' range is 10-50. I take back my comment from yesterday where I felt things weren't going in the right direction. Most autoimmune conditions respond to this type of medication, so Friday's biopsy results may shed further light on whether we're dealing with an autoimmune version of hepatitis (hope not) or an autoimmune version of arthritis.

Tuesday: Good nights sleep.
Wed: Stiff neck and shoulders on waking. Managed a work shift before taking meds. Training session at the office pm, plus taxi service for J, so more local driving than usual today.

Bloods today

Back to the hospital this afternoon for the set of blood tests pre-biopsy. Liver function, full blood count, clotting rate', blood type and cross match, etc. They were only done 3 weeks ago, in preparation for the biopsy that never was. But I guess procedures being what they are, I have them done again just to be sure. Results will be on the system by tomorrow, Wednesday.

Timing will be good for a peek at a selection of the results to see if the 7 day course of anti-inflammatories has had any effect. Things like the ALT whose levels reflect inflammation and damage to the liver cells. I want to check the bilirubin level, the one that rises with jaundice. I may be paranoid but to me my skin is more Dulux pale 'Easter Morning' than flesh pink!

Work called to advise me that the sheltered housing where my Thursday client lives has a stomach bug going round and they don't want to put me in a vulnerable position of catching the virus just before the biopsy. So no work on Thursday and thanks Pam for forewarning me!

Sunday night: Rubbish sleep. Fluey again, with weird dreams and very restless.
Monday: 5mg tablet. Better sleep, but still weird dreams that wake me 3 times.
Anti-inflammatory works for about 7 hours instead of 24 now, from mid-morning after I take it to early evening. Energy levels low. This isn't the way to go and I'm due to stop tomorrow anyway and refer back to GP.

Discovery

In 2005 I was invited onto the committee of volunteers setting up a brand new 'Heritage' centre in the town with the aid of a large Lottery Grant. We were generously given, for a peppercorn rent, a small ground floor unit within a 19th Century cotton spinning mill fronting the canal. You can see the depth of the walls by looking at the windows in the photo. First job was to totally refurbish the room, including the construction of a mezzanine floor. We needed exhibition space and space for a small number of sale items; local history books, walking guides, maps, postcards, etc.
My responsibility was to organise the transfer of 5,000 photographic prints, dating from the 1890s to present day, into digital format so that they could be available by public access computers.
Being on the committee also got me involved in the group of 40 or so volunteers who staff the centre each weekend.
Here is a photo of the ground floor. It's a bit distorted as it's a 'still' version of the 360 degree panorama. There's a small mezzanine with the computers upstairs.



Over the years I gradually withdrew from the monthly volunteer shift, and from the committee, but have jealously guarded my role as photo archivist and printer!

On Saturday my friend K was due to be there as a volunteer, but was away due to family bereavement. So I stepped in and for the first time for about 4 years did an afternoon shift.

Friday: 5mg tablet @ 11am. Mobile and pain free day. More energy than usual. Clearer head. Meeting at work to review health and take on another client. Good nights sleep
Saturday: Sleep in til 11am. 5mg tablet. Afternoon shift at the Discovery Centre. Still mobile and well enough to cook evening meal. Good night sleep.
Sunday: Sleep in til 11am. 5mg tablet. Mobile on getting up but feeling tired today. Visit the garden centre and pot up some spring daffodils. Sleep on sofa for much of the afternoon. No pain or stiffness but very tired all day. Maybe did too much Thurs/Fri.

Doctor's diagnosis

Went with T to see my GP yesterday. Apart from a home visit just after surgery when I was worried about fluid retention and a couple of phone consults about my work 'sick note' I realise I haven't seen a doctor (as opposed to consultant at the hospital) since I had the liver resection over 4 months ago.
The doctor we saw is well respected within the practice, but hadn't seen me as a patient for years. He admitted he had spoken with another GP who knows me and updated himself. Said my 'story' made his hair stand on end.

Sorry Dr L, you don't really look like this!

Knowing that each appointment slot is brief T had summarised my history in a business-like way onto one A4 sheet.

Dr L thinks my aches and pains are more likely polymyalgia than the cirrhosis. Standard treatment for this is the same as for most autoimmune conditions - steroids. Just the thing Dr C advises not good for dormant viral hepatitis! Dr L's plan is I take steroids for a week and then stop taking them and see how long I remain pain free. Yes there are potential risks that if I came to rely on the steroids it might compromise the hepatitis. On the plus side steroids dont compromise cirrhosis. If I rely on painkillers I'm more likely to damage the liver further and risk internal bleeding. It's a risk assessment situation. After 8 months of living with these debilitating symptoms whilst recovering from surgery and trying to get back to a normal life balance, I'm happy to live with this risk. I'm due another set of pre-biopsy blood tests on Tuesday 22nd Feb, and these should show if the steroids have started to reduce the inflammation.

Stiffness diary
Wednesday: Averagely active day including 2 hours at work. Shoulders, neck and hands stiff and sore. Took half dose tablet pm. Excellent night sleep.
Thursday: Neck and hands slightly stiff on waking. Flew down stairs no problem at all, hurray! Tablet at 11am. By 1pm no stiffness at all except slightly in right hand. Low energy levels but feel brighter and less 'foggy'.

Still in remission

AFP blood test results are back. Six weeks after surgery the cancer tumour marker had dropped an amazing 149 points and at 3 was well within the 'normal' range of 0-10.

Three months later it's dropped further to 1.

Great news.

Stiffness diary

Monday: feeling tired and uncomfortable all day. Very bad night, had to take painkiller @ 2am

Tuesday: Still stiff and tired. Not going to Tai Chi today. Appointment with GP tomorrow to discuss ongoing symptoms (clearly unrelated to cancer) of muscle weakness, joint pain, flu like fatigue, feverishness and generally feeling unwell.

Still mobile and pain free

24 hours after taking a strong anti-infammatory I still feel good, so time to go for a walk taking advantage of some pain free mobility. We've had a lot of rain, and the mill weir at Waulkmill has a loud roar:

We carry on so that I can have a look at the field boundary hedge-laying work T & fellow Kerridge Ridge conservation volunteers have been up to.

This ongoing project involves the conservation of natural and historic man-made features in the landscape including the repair and maintenance of rights of way and field boundaries and management of meadow and woodland. The volunteers, all previously unskilled, have been trained by the British Trust for Conservation Volunteers. I think the hedge looks pretty good and will last about 15 years before needing more work instead of the annual autumnal 'flail' cut from a tractor. A properly 'laid' hedge also gives much needed habitat for small mammals and birds.

In the photo below you can see a bit of the 'hedge' they started with, made up of uprights (as in foreground). The upright stems of the hedgerow shrubs are reduced in thickness by cutting away the wood on one side of the stem. Each stem is then laid down along the length of the hedgerow and in between stakes are driven into the line of the hedge. These vertical stakes give the finished hedge its strength. New growth at the bottom is encouraged and the sheep will no longer be able to push through holes.

Stiffness diary

Sunday am: Hands have swollen overnight, painful knuckle joints again. Neck, upper shoulders and collar bone area stiff again. Legs lacking muscle tone. Anti-inflammatory effects lasted about 36 hours.

Happy birthday

Tried to find a nicely embarrassing photo. Preferably with knobbly knees. Had you raided the dressing up box? Nice shoes!!!

Happy birthday big brother from your little sister.

Walking the way to health

"Walking can give you more energy" says the guide for this 2 mile walk.

With two Book Club friends completed this circular route today, finishing with nice lunch at the canalside cafe. Took about 1 1/2 hours, further than I have been for a while.

Stiffness diary
Completed the walk at 12 noon.

Took very very strong anti-inflammatory (that I'm not prescribed!) at 2pm.

8pm. Still fine. Let's see what tomorrow brings as judging by the Tai Chi experience this muscle stiffness is taking 24 hours to kick in.

8am Saturday. Awake 18 hours after taking the ant-inflammatory; no stiffness. Fall asleep again till 11am, minor stiffness in right ankle joint and left hand. Minor stiffness in neck. Apart from that very good 21 hours later.

Suggestive that a decent anti-inflammatory that wont harm my liver or re-activate my Hep B would keep my pain and mobility levels to relatively normal.

'Story' now online

Email from the British Liver Trust to say my 'story' has now gone onto their website.
www.britishlivertrust.org.uk/home/the-liver/liver-diseases/liver-cancer/real-story-fionas-story.aspx

For the last 4 months I've been a member of 2 online cancer forums and 2 online hepatitis forums.
I've met some lovely people amongst the 3,000+ members on the cancer forums, but though some have secondary liver tumours, nobody else has primary liver cancer.
On the hepatitis forums, which have around 2,000 members, I've been in contact with 2 people treated for HCC liver cancer - one in the US and one in Australia.
47,000 are diagnosed with breast cancer in the UK each year and many women write breast cancer blogs. Compare that to 3,400 diagnosed with primary liver cancer (about 1% of all UK cancers) and I've yet to find another blogger (although I do follow 2 transplant blogs neither are cancer patients).
In spite of the Liver Trust website there is relatively little patient experience information and support for HCC. Long term survivors telling their stories online seem to be rare. It seems a combination of no standard "chemo" or "radiation" treatments for HCC, like there are for other cancers, and the small number of survivors makes for a lack of information resources.

The success of treatment for all cancers is usually measured in 5 year survival rates, being the period at which it is less likely to return.
Of the 2 people I've 'met' online diagnosed with HCC one has survived 3 years but has a recurrence and the other has survived 5 years with zero recurrence. I've not yet met anyone online who is a >5yr survivor.

Survivor (1) had a resection in 2007 of a 6cm x 12cm tumour (about the size of a large pear). Sections 2 and 3 of their liver were removed (that's about 1/4). Like me they have compensated cirrhosis. Their AFP was elevated 20 months later but it was 3 years (2010) before identifiable new tumours appeared. By 2011 there are 5, and as they are spread throughout the liver resection is not an option. Treatment is TACE chemo.

Survivor (2) had a resection in 2005 for a 1.5cm tumour (grape size same as mine). All of section 6 removed. Compensated cirrhosis. Slightly elevated AFP consistently. No evidence of a recurrence after 5 years.

A 3rd resection patient on a cancer forum had surgery in 2008 for a 22cm tumour (Very large Fibrolamellor - longer than a banana! But not HCC)
Mets in lung 2009; Recurrence within 2 years in lymph node 2010; Removal of lymph node 2011.

Of 2 others whose blogs I follow. (1) has survived 3 years on repeated treatment for metastatic liver cancer (primary is colon). Current treatment regime is SIR Spheres (a form of radiation used in the US but not so common in the UK)

and (2) Has liver mets from a 2009 diagnosis of bowel cancer. Palliative.

Stiffness diary
9am. Legs ok but feeling a little weak. Neck more mobile. Shoulders and upper back ache slightly but not too bad. Thumb joints on both hands painful.

Evening: Have driven around 20 miles today. Also ate not very healthy slice of cream cake (with client) and small MacDonalds salty fries. Felt very unwell in bed - feverish and aching all over. Painful shoulders, knees almost completely seized up.

Woke up Friday morning and everything has cleared up!

Waiting 11 months for THE CALL

Since stealing his quote to put at the top of my home page I've been a follower of a London man waiting for a liver transplant. Today I logged on to my emails to find that he has blogged about receiving THE CALL. He posted at just after midnight that he expected to be in theatre from around 7am this morning for a liver transplant.
8pm: Update on David K's blog. Transplant successfully complete. Patient under sedation in ICU.

Stiffness diary
9am. Legs fine again after yesterdays Tai Chi. Upper back and shoulders quite stiff but bearable.
4pm. Neck and shoulders very stiff. Left side of jaw aches, difficult to open mouth. Puzzling over why, decide it's because this morning I used my teeth to pull off one of those plastic tear off security strips that go right round a lid to secure it before first opening.
8pm. Did some warm-up arm and shoulder exercises mid afternoon but am now pretty much seized up in my neck. Can turn a little way to the left but not at all to the right.

Tai Chi

On impulse decided to join my neighbour Val at her weekly Tai Chi class this afternoon. Sadly it's not on a gorgeous beach like this, just our local Methodist church hall!

5pm. Back from an hour of my first Tai Chi. The warm up exercises are lovely, I can feel my shoulders and arms free from stiffness. But the routine of 'forms' has me completely lost! Trying to co-ordinate arm movements and leg bends is like that rubbing your tummy while patting your head thing. They do have lovely names, like 'parting the wild horse's mane'. Lower back and thighs ache by the time I'm home due to the bent leg posture but worth going again next week and checking out some You Tube videos of the exercises. Oh, and we did do something like that pose in the photograph, which might be called the Intercept and Punch.

Stiffness diary, Monday
Left shoulder where it meets the clavicle is stiff and painful when I go to bed Sunday. Painful in the night, still painful and difficult to move Monday morning. Soak in hot bath, no improvement.
1pm. Drove around delivering photo orders (long story, but see http://happy-valley.org.uk/discover/picarch1.htm if you want) Shoulder stiffness easing.
5pm. Feeling OK. Only residual pain in shoulder.
7pm : Pain back in left arm only this time in the area round the biceps. Lifted an averagely heavy skillet pan, but with right arm.
Night/Tuesday early morning: Right knee around what I think is the popliteal tendon. Left hand knuckle joints.
Tuesday. Stiff around the knee but otherwise ok.
4-5pm Tai Chi
10pm. Stiff legs and left shoulder, but not as bad as anticipated. Off to bed.

Apple cake

T was born and brought up in this house with large garden including the big apple tree, as in photo below.

The tree was substantial enough to support a swing. See below J at about 10 months with T's mum who he called Granne (Anne with 'g r' in front).

Every autumn the tree was harvested for its cooking apples. And every November 5th

(Gr)Anne would bake a cake with the apples known by the family as Bonfire Cake.

For many years I had a copy of the recipe, spreading further copies around friends as it was unusual and delicious.

Last Autumn we were briefly inundated with windfall apples from friends. Time to get baking. Could I find the recipe? Hell, no.

So we invented our own. It's definitely lacking some of (Gr)Anne's ingredients, as she included dried fruit and you couldn't distinguish the apple pieces. But we think ours still tastes pretty good. J likes it slightly warm with a cup of tea, and T likes it as a pudding with custard.

Apple Cake

Ingredients as for basic Victoria sponge;

4oz butter (I use cheap unsalted supermarket own-brand not margarine)
4oz caster sugar
4oz self raising flour
2 eggs
2 teaspoons bicarbonate soda
1 teaspoon cinnamon
2 medium Bramley cooking apples or 3 desert apples.
Demerara sugar for topping

Blend the butter and caster sugar until pale and creamy. Mix the bicarbonate of soda and cinnamon into the flour and then gradually mix the flour and beaten eggs into the butter/sugar. Peel and core the apples. Chop into sugar cube size bits. Fold into the cake mix until evenly distributed.
Grease a 10"x9" cake tin and spoon the mixture in. Sprinkle with a generous topping of demerara sugar. Bake Gas 4 (350 F) for 20-25 minutes or until the top is golden and a skewer inserted comes out clean. Cut into squares.

We've also made this with pears instead of apples. It's a bit 'wetter' and has a milder flavour. The quantity of bicarb might seem high but it helps raise the mixture like a sponge cake as the fruit makes it moist.
Yesterday my brain was thinking 'sponge cake mixture' as I prepared things and I absent mindedly greased my 2 shallow round Victoria sponge cake tins instead of the deeper rectangular one. I'd also started spooning in the mixture before my brain clicked into gear, so decided to carry on. It turned out well, and nobody minded the triangles of cake instead of squares!

Stiffness diary
Wake in the night and find my neck really stiff and throat painful. Sleep for 12 hours and struggle to get out of bed. Find it painful to bend to put socks on.
Take a painkiller.
Better by 11.30 am, background aches only.
12.30. Shopping trip to supermarket. T pushes trolley. Feel fine, only slight ache in upper back
3pm Rooting around in cupboard lifting out photo albums
4pm Legs stiffening
Typing on PC/cooking
6pm. Shoulder joints and left elbow painful.

Diary of a goldfish

Cleaned out the goldfish today. They are 12 years old, probably not a bad age for goldfish in a tank? The result of our first 'can I have a puppy', 'no, but you can have a goldfish/hampster/gerbil/guinea pig' conversation. Followed by a lifetime of Mum doing the looking after. Actually we never had any of the others though we did have a succession of 8 mice that many people can't stand but I became very fond of. One used to sit on my shoulder while I cleaned out the cage.
Truthfully T did all the heavy bucket lifting while I monitored siphoning the dirty water. Reminded me of T's suggestion to start a diary with the aim of getting a clearer picture of a pattern to these fluctuating aches and pains.

So this is really a diary for me, starting yesterday:
Friday 4th: Lifted heavy old Kenwood mixer down from overhead cupboard and back up again, circa 3pm. (Made apple cake, yum)
10pm. Sharp pain in right wrist. Right arm very stiff and painful, can barely move it. Left arm fine.
By morning, all aches and stiffness back to 'normal' background level.

Saturday 5th. Raining all day, so sat around too much.
1pm. Legs stiff, backside aching from lack of exercise.
4pm. Cleaned fish tank, as above. Await onset of stiffness.
6pm. Evening meal
7pm. Upper shoulders stiff, probably from using laptop too much. Overcome with fatigue and crash out for 1/2 hour. Note to self: need for a nap after evening meal happens quite a lot now. Assume it's hard work for my liver. Makes me feel like a granny.
10pm. Stiff all over. Off to bed.

The biopsy that never was, ha ha

Got to my 9.30am appointment minus breakfast or cuppa tea to find it rescheduled to 25th Feb.
Dr C must have decided my suggestion to get the AFP tumour marker test result first wasn't such a bad idea. The consultant radiologist must have been cancelled and the bed cancelled - only Barbara forgot to cancel me too!

So poor T had to put his coat back on and come to fetch me again.

Sitting in the main corridor watching the hospital world go by, greeting the odd friend in passing, maybe a trolley in a corridor will be a good way to pass the 6 hours of bed rest! Lots of activity and people watching. I was quite content if a little hungry and thirsty.

Results back

As promised by Rachel, blood test results are back and my GP surgery has a printout for me.
The blood clotting ones I wanted to check pre-biospy are fine.

Of the ones that monitor the cirrhosis none are significantly 'better', some are stable, one or two slightly worse from 3 months ago. Two of the 'worse' measurements help me monitor the fluid balance in my body which can be an indicator of the dreaded 'ascites' or swollen beer belly tummy that is a cirrhosis side effect. They are only a teeny tiny bit different to last time, suggesting a bit of fluid build up somewhere, but not enough to notice it round my waist or in my ankles etc.

The AFP tumour marker wasn't taken after all. The results take longer to come back and wouldn't have been in time. Spoke to Dr C over the phone to clarify why. Seems I got our communications lines crossed (my lack of Hindu and perhaps a glitch in his English) as to why he had previously said to avoid a liver biopsy if at all possible. What he apparently meant was pre-surgery he wouldn't stick a biopsy needle in while there was a tumour in situ - obvious really! As long as Friday's biopsy needle is guided by ultrasound into the liver they can pick a spot with no sign of suspicious lumps or bumps. Also normal protocol would have been not to check AFP until May, but then I don't do things by protocol! For my own piece of mind I'll get my 'extra' 3 monthly AFP done as planned by the GP next week. I COULD postpone the biopsy until after that, but I suspect a single abnormal AFP (should it turn out to be so, let's hope not) wouldn't be enough to shout 'cancer' until another and probably another or even a CT scan had been done. I've already waited a long time for a result via biopsy in case it tells us anything new, so I'll go ahead.

Waiting on test results

Hospital appointment today to take bloods before the biopsy on Friday.

The appointment letter said allow 1 hour. That's 1/2 hour to find a parking space. 15 minutes to find Ward 9. Not so easy when the signage goes 7,8, .. 10, 11. My letter says 'Short Stay Unit' (I think they've directed me to the pay-and-display car park) but none of the signs do. I try the 'Day Case Unit' and the 'Assessment Unit' before being directed to the right set of doors. Remember those NHS days when there was a Day Room for each ward, that stank of tobacco and had one ropey TV in it? Now hospitals are non-smoking and in most wards each bed has its pay-as-you-go TV. What to do with the empty room? Fix another notice on top of the old Day Room one and call it something fancy!
5 minutes for lovely plump Rachel to confidently say in her Brummie accent 'Oi cun get bluud out ov a stown, me', and prove she is right. Then 10 minutes to get the heck out of there.

Rachel is my kind of can-do nurse. Yes she can include the AFP. Yes she can tell me which bloods she is taking. Yes they will be on the computer system in 4 hours. Yes my GP can log into the system or ring the path lab tomorrow and get the results. Yes they will send written results to my GP so I can have copies. Yay!
Of course whether this all falls into place is another thing entirely. Tomorrow I'll ring the GP and hopefully find out if my tumour marker is stable.
More waiting.