Be prepared

The snow has arrived. Spoke to brother last week who lives in the North East. He had made it home on Thursday, but Friday, Monday and Tuesday his school was closed. (Update: the following weekend brother and family drove down the A1 to their new house. And promptly got snowed in. Text message on 7th Dec says they are still camping there - no furniture as they weren't planning to move in til over the Christmas holidays. Keep forgetting to ask where the dogs and cats and guinea pigs are, probably left behind in the care of neighbours at the rented cottage 60 miles away!)

Yesterday, Monday, I suggested to T we get ourselves prepared to be snowed in. We did a large grocery shop and brought in a pile of logs for the stove. Lucky we did, as the roads are now slippy and slidey.

The living room is toasty, but the desk area by the back door where the PC sits is cold. Today is 'lets move all the furniture around' day. Down from the office upstairs comes my Dad's antique knee-hole desk. This will go on an internal wall, near a radiator, and under two lights - a warmer spot for the PC user. First two shelving units (plus contents) have to be moved elsewhere to make room. Etc etc. In all, 5 pieces of furniture play musical chairs before settling in their new homes. Keeps you warm!

Wednesday

Weight: 9st again. Hurrah

New layout of furniture and computer works well. My exercise today was to clear the paths of snow and the car of its blanket of snow. Not that it's going anywhere, we live on a hill where the roads dont get gritted.

With the central heating off I'm staying perfectly warm and snug in front of the stove. Today it's burning a mix of smokeless fuel, free logs from the KRIV area, and bits of broken chair.

Off the blocks, jumped first hurdle

Revised appointment letter in post. I get to see the gastroenterologist on December 7th 2010 instead of April 1st 2011. (who wants an appointment on April Fools day anyway!) Hurrah for his secretary. Send her a big thank you.
Next hurdle: ensure by whatever means possible that my file at the North Manchester hospital which is part of the Pennine Acute NHS trust, and pathology findings which are somewhere within the HepatoBiliary team pathology unit, find their way, on time, to a clinic within the East Cheshire NHS trust at Congleton Memorial Hospital for 9.45 on 7th December.

Faites vos jeux!

Snug

Our energy supplier has an online tracker for our gas and electricity usage. Since I bought a wireless electricity monitor the electric use has gone down 10%. This October our gas central heating has gone up 25% because I'm at home all day with the heating on.
Today I decided there was no point having all the radiators on, even at a low setting, when I'm only using the kitchen and living room. It's easy peasy to use a laptop via wireless in a warm living room instead of the main PC near a cold set of French windows.
I've had logs (free from various sources) on our little stove and it's really snug, much more than the heating. Also among the items burning are four round feet of an old wooden toy box, a chopped up dining chair which broke, and bits of an Argos computer workstation desk we no longer had room for. Toastie!
Finished my NVQ unit on administering medication in the care setting. The next 2 x1,000 word assignments are 'Moving, handling and positioning individuals' and 'Prevention of pressure sores'. I'm not too good at the moving and positioning of myself at the moment - shoulders, neck and arms ache from the typing!

Back to the starting blocks

Weight: 8st 13. Lost a bit somewhere.
750 words done of my 1,000 word NVQ assignment on 'administering medication to individuals'. Right up my street but finding it difficult to find the right 1,000 words!
Walk: 3/4 hour with K and her dog Basil on Friday along the canal and through Tinkers Clough (above), some of it hilly. Drive T to his KRIV work (about 3 miles)
Saturday: Drive into Macclesfield (4 miles) and shop for 1/2 hour while J had a haircut.
My upper body aches like mad even after such a short drive.
Monday: walk 0.7 miles down a steep hill to the butchers and back up again. Workout for the thigh muscles.
I'm stiff and sore every evening, usually better once up and about in the morning.
Over the weekend, surfing the forums, someone said that the 'gold standard' of diagnosing liver disease is a biopsy. I didn't have one under Dr Caravan-a-nan's care as his view was that poking into the liver could spread cancer cells. I had a non-invasive Fibroscan instead. A sample of liver tissue is the best way to diagnose the type of hepatitis (or other condition) causing persistant inflammation. A forum poster suggests finding out if the hospital path lab still has the tissue sample slides. It's 2 months ago, so I'm not optimistic.
Call Dr Caravan-a-nan's secretary. Yes she is acting on my email asking for an earlier than 2011 appointment for a diagnosis. Sadly it seems another patient will have their slot inexplicably cancelled/delayed so that I can be squeezed in. That's dreadful. She doesn't know the workings of the Pathology unit at North Manchester but will ask O'Blimey's secretary to send over my file to Dr Caravan-a-nan. If nothing has progressed by the end of the week I may have to bite the bullet and ask my GP for a referral elsewhere, but his appointment diary is booked until December 9th by patients who already know they are going to be ill. There's a hepatologist at Manchester Royal Infirmary whose speciality is autoimmune liver disease.

The drugs to treat both viral hepatitis (such as interferon, costly @ circa £4,000 per course of treatment) or steroids for autoimmune (Prednisolone @ 18p a pill for as long as it takes) are out there.

Email my Macmillan nurse as she is part of the Pennine hospital trust network to see if she will ask the Pennine pathology department about the specimen. She has an out-of-office reply until 29th November. Sigh.

Reviewer role

The fact that I get so stiff and achey after simple tasks still niggles. I'm determined to get a layman's interpretation of the 'persistant florid activity' in my liver. Cousin GP (thanks coz) has come across it in terms of autoimmune hepatitis. Looking back over past blood tests results I find that although I am now supposedly negative for Hep B I tested positive for anti-smooth muscle autoantibody (ASMA) which is a standard test for autoimmune hepatitis. At least the results say to a 'titre of 1:800' and normal it seems is 1:20. This was probably not taken further as everyone was focussed on the cancer surgery.
Before going back to the GP with this query I email the British Liver Trust as they have been helpful before and have a helpline. In a jiffy the reply comes back that they are forwarding my query to one of their medical advisors who are all senior hepatologists. Brilliant. And in a further jiffy back comes the response: "The persistent florid activity refers to the inflammation in the liver. In this case there is clearly a lot of inflammation which means that the HBV is active or that there is another cause of liver inflammation." What a service, and now I can go back to the GP and get this checked out.
Their patient enquiry officer Sarah asks whether I would consider helping them as a Lay Reviewer for the new edition of their patient leaflet for Liver cancer? They have it checked by hepatologists to make sure it is clinically accurate. Then they ask a number of people who have experience of liver cancer to read through to check it is clear, useful and reflects their information needs.
I said yes - how cool is that!

Is it better to be in the know?

My GP's 1st letter to a consultant included the phrase "Mrs S.. is a lady who likes to understand her medical conditions and investigations fully". I've not come across any reluctance so far to give me copies of test results and copies of letters between consultants, when I have asked for them. If there's a term I don't understand, I ask (thanks GP cousin!) or look it up.
On the 'chat' forums I've come across patients who have refused what they consider irrelevant procedures (i.e. a lady with pain in her appendix area given an appointment for an '...oscopy' that would probe a pain free area; another with cancer in both breasts only offered treatment for one).
Yesterday on one forum I 'chatted' with a lovely man, lets call him H. Having recovered from brain surgery following a bad car accident he was on medication for fits, which had damaged his liver and now he needs a transplant. He's being monitored at one of the 6 transplant centres. He's confident his team of medics will look after him and asks no questions. He told me didn't have cancer but had Child's Pugh disease so I replied it was a scoring system to assess chronic liver health and necessity of transplant, not a disease. He did think the word 'cirrhosis' sounded familiar. And he knew from a GP letter that he had legions (sic) on his liver, 5-8 sections of them. A right Roman Army! I said I thought he might mean 'lesions' on segments 5,6,7 and 8, livers having 8 segments.
He asked if I was Gregory House (Hugh Laurie 'House MD' tv series). That's the best compliment ever!
In passing he said he was tired much of the day yet had trouble sleeping at night. Might be anxiety, but if you read up on symptoms of cirrhosis a common one is sleep disturbance and needs a doctor's advice on how to best deal with it. Thinking you have Childs Pugh disease and not knowing you have cirrhosis could mean side effects/symptoms being missed and left untreated.
Wild wet day so no walk.
wii fit: 800 aerobic steps, 25 mins yoga. Cheeky thing now says my ideal weight to aim for is 9st 11lbs.

G.I. in the trash

Val my neighbour takes me to an out of town Marks & Spencer for a couple of hours. She needs flowers for a friend and I need to return the too baggy baggy pants. We browse the comfy trouser section and I try on two pairs that fit much better. Also get some treats for tea (it's parent's evening tonight so not much time for cooking) and something for Christmas stockings. I start looking out for these round about now as I think it's fun to open stockings in bed on Christmas morning.
Because cirrhosis affects the ability to store glycogen I've been researching the glycemic index, a list of high carbohydrate foods that break down slowly, releasing glucose gradually into the bloodstream. Low GI foods are good for slow release, high are bad. Yesterday I made a low GI recipe for the first time. It sounded ok - chicken and chickpea casserole. It was voted 100% disgusting by all of us, and went in the bin. Thanks goodness for our friendly Indian takeaway at the bottom of the road.
T's encouragement and persistance at exercise is beginning to pay off. We had a nice 1/2 hour stroll in crisp sunshine around local viewpoint Teggs Nose, and I didnt seize up with stiff muscles till 2am when I tottered to the bathroom.
Weight: 9st 1lb - yay I've cracked the 9st barrier
Walk: 1/2 hour
Wii fit: 1/4 hour stepping and 1/4 hour ski slalom

Histopathology

Collected the print-out of my November 4th tests from the GP. The blood chemistry ones confirmed what had been read to me over the phone. Normal apart from one or two little blips - sodium low by 1 mmol per litre, teeny tiny amount. ALT 59 (upper normal is 35) which indicates damage by inflammation, i.e. hepatitis. ALT will always be high. Then on to the histopathology; the examination of the tissue taken at biopsy.
Tumour weight 10 grammes. How much is 10g? 2 Brazil nuts + 4 almonds! Not much help for visualization if you don't have nuts (!) so I eat them and weigh a £1 coin. Bang on 10g.
Tumour diameter: 16mm - same as a 5p.
Tumour cells present at margin: 0
Capsule: intact
Specimen size (including a decent margin) 34x33x21mm. That looks quite big when I draw it as a cube. I wonder if it's re-grown.
Tumour stage: T2; not so good, I thought it was a T1. T2 means involvement of surrounding blood vessels. It conflicts with the statement "no vascular involvement" further down the list.
Tumour grade (this is how aggressive it is): The Grades are 1 to 4, 1 being the least aggressive. Mine was G2/3.
Background liver; Fibrosis, established cirrhosis, hepatitis B. Then something I've yet to find a layman's definition for "persistent florid activity'. The closest I can find is that it might mean there is still evidence of hepatitis inflammation/activity.
So why am I interested in something that isn't there any more? Because the report gives an educated guide to recurrence. In academic papers this is divided into early recurrence (less than 1 year) or late (slower than 1 year). Significant risk factors for early recurrence in small HCC are:
(1) serum alpha-fetoprotein (AFP) level >100 ng/ml; mine was 152 at the time of the histology report. (2) lack of tumor capsule formation; mine was intact. (3) microscopic vascular invasion; mine was described as absent. (4) high Edmonson-Steiner grades; on a scale of 1-4 mine was G2/3.

Remission

Blood test results are back from my 6 week post op check. Everything is NORMAL! Hurrah.

AFP tumour marker is down from 152 to 3. The secretary printed it out and re-read to confirm that such a large drop was correct. Allowing for the cirrhosis I couldn't have expected any better. No cancer. All other liver functions are back within normal range including the important albumin and bilirubin. Clotting range is normal. It all adds up to 100% perfect for someone with cirrhosis and keeps me within the Childs Pugh A grade.

Wii fit: 10 mins of aerobic stepping (about 700 steps I think) + 10 minutes of snowboarding for fun.

11th of the 11th

Happy 81st Birthday Uncle M. Here you are age about 26 with my Mum, caught by breast cancer far too young.

Spend most of the morning working on a spread sheet of my 8 sets of blood tests taken between 2nd July and 4th November. Now I can see the 'out of range' ones more easily. Tumour marker AFP stands out as too high - hoping that will have dropped quite a bit post surgery. Of the liver function tests: Albumin (that's the one that balances fluids) was too low on 2nd July, then became normal, then too low again post surgery. ALT (indicates degree of damage to liver cells) was high, then normal, and then high post surgery. Globulin (high in cirrhosis) is high. Bilirubin normal at the moment but needs an eye kept on as is steadily dropping. ALP is normal. Called the GP and they have heard nothing as yet from the surgeon. Called the surgeon's secretary and she will fax the blood tests to the GP. Plan to call GP again Friday.

2pm: Wii fit aerobics 15mins.

3 x 1,000 word NVQ Health & Social care assignments arrive in the post from my assessor. That will keep me busy for a while!

Stiff and sore for the rest of the day and a bad night partly due to the aches and partly the stormy weather. Part of our neighbour's fence blows into our garden.

Major surgery

Fellow blogger Carole is out of her 10 hour surgery for rectal cancer and currently in a high dependency unit. I'm hoping that means she has skipped over the Intensive Care stage, generally a good sign. Thinking of you Carole.

Not a restful night. Feverish and achey until falling asleep at midnight. And that was after only 2x 1/2hr spells of exercise. Awake again at 6am, so after seeing J off to school went back to bed for a bit. Still aching but not so bad. If this is my muscles eating up their own tissue when I exercise it's not nice. Plan B is to eat carbohydrates while exercising and see if that helps! Porridge for breakfast and now off for 10 o'clock-ses (as opposed to elevenses) of boiled egg and toast.
10:30. 15 mins Wii aerobics while eating 1/2 banana! Let's see if that works.
4pm: 0.5mile walk
7pm: 15 mins aerobics while eating nuts and fruit.

Hunt the hepatologist

At my 6 week check it was suggested that I be placed under the care of a hepatologist. Hepatology is the branch of medicine that incorporates the study of liver, gallbladder, biliary tree, and pancreas as well as management of their disorders and is a sub-speciality of gastroenterology. Dr Caravan-a-nan is a gastroenterologist. I don’t know if he has a sub-speciality.
Step1: Ask my contact on the Macmillan website. Yes she sees a consultant hepatologist at Addenbrookes hospital. She got names from a poster on the chat forum, took them to her GP and was referred from there!
Step 2: British Liver Trust www.britishlivertrust.org.uk. Their Medical Advisory Committee are senior hepatologists and members of the British Association for the Study of the Liver www.basl.org.uk
Step 2A: Get sidetracked by a description of ‘compensated cirrhosis’. “Compensated cirrhosis means that the liver is still able to cope with or compensate for the damage and carry out most (sometimes all) of its functions. Cirrhosis ranges from mild (at the beginning) to moderate and severe. Severe cirrhosis can then progress to decompensated cirrhosis. In general people with compensated cirrhosis have normal liver function for serum albumin, clotting factors and bilirubin. But without treatment compensated cirrhosis does progress inevitably to decompensated cirrhosis where the liver is not able to perform its normal functions.”
11am Time to follow the British Liver Trust advice and go for a snack: “snack between meals to top up on calories. Cirrhosis affects your ability to store glycogen, a carbohydrate that gives you short-term energy. This means that your body has to use its own muscle tissue to provide energy and this leads to muscle wasting and weakness."
Snack time evolves into feet up on sofa time watching old episode of House MD, followed by lunch.
2pm Step 3: Find a 2010 survey of UK hepatology provision by the Foundation for Liver Research. There are 27 non-transplant centres in the UK and 6 transplant. The report says that in Cheshire there is one non-transplant centre at Stepping Hill hospital but so far I’ve been unable to confirm they have a hepatologist there. There is one hepatologist listed at Manchester Royal Infirmary, Dr Martin Prince. There is a Department of Hepatology at Macclesfield but it seems the consultants there are gastroenterologists without a sub-speciality in hepatology. There were no hepatologists listed for North Manchester but there are hepatobiliary surgeons. Soon after my diagnosis a GP cousin sent me the name of a consultant at Basingstoke, one of the non-transplant centres. I've come across references to the hospital quite often. They specialise in the treatment of Pseudomyxoma Peritonei (PMP) a very rare cancer that usually begins in the appendix. How confusing is this!
Time for some exercise.
Walk: 0.5 mile
Wii fit: 30 mins aerobics then later 30 mins yoga. Total = 1 hr
Kitchen: 30 mins Nigel Slater's bubble and squeak cakes
10pm. Even after a hot bath I am now seriously stiff, so totter off to bed. Night night.

I went skiing

Sunday

Weight: 8st 13

Waist: 32"

Walk: 1 mile

Wii fit: 20 minutes ski slalom

The Wii Fit tells me my BMI is 21 which is in the ideal range for my height.

I would have been sceptical about this except at my recent check the hospital scales worked out my BMI to be the same.

Monday

Walk: 0 miles - windy and rainy today.

Wii fit: 20 minutes of jogging with an annoying avatar that turns round and waves at me to follow it but if I run fast enough to overtake trips me up so I fall on my face! And aerobic 'stepping'.

Emphasis now on homemade meals and less reliance on salty convenience foods. Made Nigel Slater's 'squash and turkey bake' for tea - 1 1/2 hours kitchen time.

Surgery

Tomorrow, Monday, is hospital admission day for a fellow blogger. To have a laparoscopic abdominoperineal resection for lower rectal cancer. Six hours of surgery. Intensive Care for a day or two, then High Dependency Unit, then a general ward for 10 days. I’ll continue to check your blog for news of your progress Carole.

Today art critic Tom Lubbock writes in The Observer of his diagnosis in 2008 with gliobastoma multiforme or high grade brain tumour. He is in his early 50’s with a 3 year old son. Of his first surgery he writes “brain surgery: not worried about the operation; feeling excited, honoured, to be benefiting from, taking part in, human expertise at this level”. He then writes of the bliss (I wouldn’t use quite that word but I know what he’s saying) of waking in recovery and finding his mind is still working and his body parts functioning.

Water shortage

Our water went off yesterday. A frequent enough event for us to keep 3x 5litre bottles of drinking water in store and a water butt in the garden for filling buckets for loo flushing etc. In 1896 when the first boreholes were sunk to supply the town the population was c. 3,000. Current population is 7,300 and although we now have local feeder reservoirs in the hills the supply uses much of the same Victorian pipework, so suffers from frequent leaks and stoppages.

UK Environment Agency figures say that each person uses, on average, 150 litres (33 gallons) per 24 hours. By comparison the charity Water Aid's figures for developing countries is 10 litres (2 gallons) per person.

Long view

Drove out to look at the hedge T and his KRIV (www.kriv.org.uk/) colleagues will be 'laying' next week. Back along Long Lane. Stopped for a short walk and the long view west across the Cheshire Plain. Can you see those rain showers approaching in the distance? My first walk back in the countryside instead of along a pavement. Felt fine, but I know by this evening I will have seized up. No proper diagnosis for this muscle atrophy yet so the plan is to just keep walking!

Dream on....

J has not been sleeping well recently, could be his cough or his feeling overwhelmed with 'A' level work. For a few days now he has brought a guitar up to his bedroom in the evenings. I go to bed before the others and it's been a relaxing treat to drift off to the strains of whatever his current acoustic favourite is. He also has 2 electric guitars and an electric bass, but I don't think Radiohead's 'Paranoid Android' at amp level 10 would be as soothing! He would like a Rickenbacker (see above) but at £1,700 .... dream on!

6 week check

It was my 6 week check-up yesterday. The good news is that (barring suspicious blood test results – remember they forgot to arrange them before the appointment so there were none to review?) I'm being referred back to the care of Dr Caravan-a-nan. Instead of taking 6 hours out of a day for a 15 minute appointment I can go 15 minutes down the road. The hospital policy is to run checks every 6 months where some NHS trusts or specialist centres check 3-monthly. On T’s suggestion I asked the GP if he would do tumour marker and liver function tests in the 3-monthly gaps between the hospital checks and he said yes, so I’m happy about that.
The not so good news is the liver is cirrhotic. The histology report indicates a Child-Pugh grade of A. In gastroenterology the Child-Pugh score is used to assess the prognosis of cirrhosis. It takes a combination of liver function blood test results, your clotting rate, whether you have ascites (fluid in your abdomen) and whether you have hepatic encephalopathy (confusion caused by an accumulation of toxic substances because the liver can’t remove them). You can be A, B or C with a score of 5-15. I score 5 at the moment so I’m an A. 5’s and 6’s are eligible for resection. Above that and I won’t be eligible if it’s needed in the future. My bilirubin (an increase causes jaundice) and albumin (a protein that helps keep fluid pressures in the body stable) only have to go slightly above or below the norm to attract 2 extra points, a motivation to stay on a healthy diet and keep fit.
I didn’t ask about prognosis. There are too many variables. Hepatitis medication seems to suppress the virus for about 4 years (I don’t need it at the moment). HCC tumours can reoccur as soon as 6 months. Cirrhosis can either stay the same or get worse. If you stay as ‘A’ by year 2 survival rates go from 100% to 85% so a statistician can work that out longer term. I don’t know when my Year One started.
More good news was that on the return journey I felt really hungry. The first time since the surgery. We got a takeaway from our favourite Bay Leaf restaurant and I managed a decent size portion followed by pears and ice cream.

Out & about

Tuesday was a feeling rough day. Had an unsettled night, partly spent in the kitchen eating toast and sleeping on the sofa from 4am. Ruth took me out for tea and cake at the Waterside and despite feeling below par it was a boost to get out of the house and have a chat. We tried out the new self serve facility in the library - I had to renew my NVQ coursework book. I've finished all 4 compulsory unit workbooks - yay! My assessor is sending me some 'assignments' (very MI5) in the post. Spent the rest of the day with a blanket wrapped round my sore tum!
Much better night last night, in fact slept so well I really didn't want to move when the alarm went. Today my ex-colleague and cake maker supremo Lulu had to deliver a cake order to one of our care clients and kindly took me along for a surprise visit. With very bad luck and bad timing this lady has two of her five carers undergoing cancer treatment at the same time. Nice to be badly missed! On the way home stopped off at a new Waitrose (not my normal outlet) and bought some delicious organic stoneground bread which was asking to have a large chunk torn off, spread with strawberry jam and downed with a cup of tea. I'll be going back for some Christmas treats.

Birthday wishes

HAPPY BIRTHDAY

Happy birthday sister-in-law. This is one of your Muker walks with your bro.