"There's a myth that anyone who has a liver problem has brought it on themselves" This quote is from a Crohn's disease patient living with a blocked portal vein hoping for a liver transplant (Independent 31st Oct 2010)

Tuesday, 28 December 2010

Elementary

In some posts, fascinating though it may be, I've got too bogged down with technical detail. It's time to simplify.

When O'Blimey operated to remove the tumour he found a 'not very healthy' liver. Where the soft healthy liver tissue had become stiff scarred tissue.



Any long term inflammation of the liver can cause this damage. For some people it's too much drink, for others too much fat. In my case the assumption is that the cirrhosis and cancer had been caused by the liver being under attack for many years by this colourful looking virus:-

However......

Clever blood tests have shown that I am, in medical-speak, an 'inactive carrier' of Hep B. Typically inactive carriers don't have inflammation. The odd thing is, O'Blimey's pathologist found evidence of 'persistent inflammation'.
There are 4 other kinds of viral hepatitis A, C, D and E plus one called autoimmune where your body thinks it has a virus and goes into defence mode against itself.
I've had all sorts of blood tests to see which kind I might have. Lots of the tests came back negative, except some that point in the direction ...

of autoimmune. I have symptoms that fit this too; fatigue, muscle aches and pains, feeling shivery without fever.

A definite diagnosis should be possible by combining blood tests with looking at tissue samples under the microscope. Don't Hepatitis A, B, C and D look pretty in pink!


Early in New Year, once things are
again, I hope to get some answers from the consultants so that I can get treatment.

Otherwise, my liver will end up looking like this

And I won't feel very well at all.

Sunday, 26 December 2010

A month of snow

Snow first fell on 30th November, almost 4 weeks ago. Most days it feels too cold for me to be tempted out for a walk, however attractive it looks.

Met Office forecast for tomorrow is for more 'light' snow, with temperatures falling below freezing again tonight


Photograph below was sent today by Janet. Hope you don't mind me reproducing it here, it's stunning. Family members will recognise it as Stenkrith. For those who don't recognise it, it looks like an abstract rather than a feature where the River Eden cuts through a limestone gorge creating a waterfall and rock pools.

Saturday, 25 December 2010

Traditions

Two Christmas Bollington traditions:

Carols round the tree on Christmas Eve

And the brass band at White Nancy on Christmas Day



photos by Bollington Festival photography

Friday, 24 December 2010

Family Christmas

Family Christmas 1983

Obligatory wearing of embarrassing paper hats!

For many years my Dad made home-made Christmas crackers. Including the paper hats. In between was spent collecting awful cracker jokes which I helped type up. He bought the 'bangers' mail order, and flat-pack boxes. Everything else was made from scratch. Boxes of crackers were given to family or sold to friends to raise funds for local charities.

Bad cracker jokes:

Q: What is Santa's favourite pizza? A: One that's deep pan, crisp and even.

Q: What do you call a man with brown paper trousers? A: Russell

Q: What do you call a short sighted dinosaur? A: A do-you-think-he-saw-us.

Happy Christmas everyone.

Winters past



BIG FREEZE CAUSES CHAOS ACROSS UK
Here are some archive pictures taken where I live. Some days it was tricky to get out of the front door. Or see out of the window.


Taking the dog for a walk .......

The bus still made it through ........


No this isn't a snow covered lane. It's the canal. Brrrrrrrrrrrr .......

All images reproduced by kind permission of Bollington Discovery Centre

Wednesday, 22 December 2010

Dear Santa ...


... in my stocking this Christmas I would like patience.
Dr W called today. He explained that referrals flow in a primary/secondary/tertiary sequence. He's the primary. Dr Caravan is the secondary. Dr Hepatologist is the tertiary.
Primary doesn't refer to tertiary. Secondary does.
Back to waiting til after Christmas.
He will renew my sick note for another 4 weeks until 24th January. Not until it runs out on 27th December though. When they are 'closed for Christmas' (see below). So I can't pick it up til the 29th. Ho ho ho.

Closed for Christmas

Spoke to the GP secretary this morning to check on referral of autoimmune query. Today is Dr W's 'admin' day, so he should process it, and update my sick note. "It is nearly Christmas" she chided me gently.
I'd just been down to our wee corner shoppy for some milk, and noticed their announcement they would be open for a few hours on Christmas Day. We live near sheltered housing, and the shop is a lifesaver for the elderly.
Came back and wrote a stroppy, whiny, moaning post about all the services that carry on over Christmas so why should my consultant and GP 'close for Christmas' in advance. Realised just how whiny it was so deleted it. But I've left Santa as I rather like the picture.

Saturday, 18 December 2010

Doctor. Please find my missing jigsaw piece


Since I went to the GP in May I've had enough blood samples sent to labs to do 76 tests. An x-ray, two CT scans and a MRI scan. That's an 80 piece jigsaw.

Hepatitis A doesn't match the picture on the box. It's not a chronic condition and doesn't cause liver damage. Neither does E.
We have all the Hep B pieces to complete an old jigsaw, but no shiny brand new bits for those suspicious areas in the liver.
There are enough pieces to know that Hep C and D have been matched and tested and they came back negative for this jigsaw as well.
That leaves Autoimmune. I've got all the edge pieces, the corners and pretty much all the rest. I've even got a special piece, a piece I'm pretty sure is a positive autoantibody for autoimmune. But I need a hepatologist to check if it really fits. And I need Dr C to find that piece hiding in the biopsy material. Hurry up Dr and find it for me. Just in case the doctor with the missing piece doesn't spot the space for it, I've asked a new doctor, a hepatologist, to try and make the jigsaw fit too.
Sadly it looks as though, what with decorating their trees and last minute present shopping (all their Amazon orders are stuck in a snowbound warehouse somewhere) they haven't got time to finish the jigsaw before Christmas.
Raising a glass to GP coz who spotted back in November some signs of autoimmune (and she hasn't even seen me, the liver or the jigsaw).
And raising a glass to the British Liver Trust hepatologist who set me off on this detective trail by recognising from the pathology report that something is going on and it isn't the inactive Hep B.
Oh, and the raised glass is orange juice.
Cheers all!!

Tuesday, 14 December 2010

Sensitive to what people say

A few days ago I bumped into a work colleague at the supermarket tills. She knows why I’m off work. Visited me at home a few days after I had been discharged. She’s an ex matron, ex District Nurse, and in her 60’s is our in-house trainer as well as finding time for a few clients. We chatted for a while about my clients, returning to work etc. At one point she said ‘well, could be worse’ and I felt myself bristling with indignation. How could it be worse, what does she know. Bleakly I said “ weelll, there’s a 50% chance the cancer will be back in 3 years and I’ve got cirrhosis”. Then I thought, actually it could be worse. I could be on a palliative pathway, I could be on the transplant list, I could be coping on my own (as some bloggers are) without T and J, the friends who pop in, family and cyber bloggers.

Family know, but ‘followers’ don’t, that a few years ago I made a major job change and now work (well not NOW now as I’m off sick til the New Year) for a franchise specializing in non-medical care of older people in their own homes. I’ve re-trained; currently in my second year of college (last time at college was 1979). My clients have chronic illnesses and with chronic illness comes the shift from cure to coping. My clients have Parkinsons, Alzheimers, congestive heart failure, chronic lung disease, Atherosclerosis, rheumatoid arthritis, diabetes. No imminent cure. All require regular check-ups. Most mean a slow deterioration. Some are also ‘survivors’ of breast or prostate cancer, strokes or heart attacks.

So why should I feel I drew the short straw? Because of age? I’ve only just passed my half century whilst they are in their 70s and 80s. Because I feel I’m due more time to see J into adulthood? They have grandchildren not yet grown, who will miss them. Healthy people take for granted thinking of future career goals, dreams, holidays, grandchildren, retirement. We are as a society very future oriented; we don’t live in the moment.

When you can no longer assume a future you feel a little hard done by. And become sensitive to what people say.
My pet hates are (1) “Don’t worry” and (2) “You’ll be fine”.
Don’t worry
I know worrying gets you nowhere, just gives you something to do. So I’ll work on being Charlie Brown from the ‘Peanuts’ cartoon : “I've developed a new philosophy... I only dread one day at a time”
You’ll be fine

Particularly annoying if said just before some major procedure or test. Statistically I probably will be. But that’s not the same as you knowing in advance that I will be. If you are so sure I’ll be fine then whoop de doo I never need any more bloods drawn, any more canulas with IV, any more delicious drinks of iodine contrast, any tubes down my oesophagus.
3rd on the list is "hope you get well soon".
I didn’t have the flu or an attack of the measles. Christopher Robin had those:

"Christopher Robin
Had wheezles
And sneezles,"
…… …..
A A Milne, Now We Are Six 1927

Other bloggers pet hates:
Blogger/09531125606268748793
“The one I hate is 'You're so brave...' My ass. What other choice do I have? If I could just have said, 'Yeah, no thanks, I'm not doing the whole cancer thing,' I'd have done that. I didn't have a choice. I got out of bed in the morning. That's bravery? I wasn't brave. I was sensible. Nothing more. “

Blogger /11727438178278659080
“I absolutely love all my friends and family but can’t stomach another ‘you are an inspiration”
Maybe what they
just mean is they are glad it is not them, and they don't know how they would cope but neither did we until we had to, and really coping without choice is what we do.

Sunday, 12 December 2010

Arcade Fire - Wake Up (live at Manchester Central)



J was here last night, with his mate Cal. I saw Arcade Fire with J and T about 3 years ago at the MEN. It's not kool to go with your Mum any more!

Friday, 10 December 2010

Donor card

The quote at the top of this blog is by David Kallin, a marketing consultant living in London. David has been waiting for a liver transplant since March 2010 after being diagnosed with a blocked portal vein, following complications from intestinal inflammation and Crohn's disease. His diary "Chopped Liver" is at http://davidkallin.wordpress.com/

It's easy peasy to become a donor. I did it on 10th September, prior to surgery. On the grounds that if I didn't make it at least a few other people would. One donor can save the life of several people, restore the sight of two others and improve the quality of life of many more. Kidneys, heart, liver, lungs, pancreas and the small bowel can all be transplanted. Well ok, cross off liver for me (I might need yours, he he). And probably cross off heart cos of the faulty valve. But that still leaves a bit, including corneas, skin, bone, tendons and cartilage.


So click on http://www.organdonation.nhs.uk/ukt/ and see what you can do

Tuesday, 7 December 2010

:) Smiles=8 ....... :( Frowns=2

Appointment went very well. I’d been squeezed in to an alternative clinic at Congleton, whose ‘hospital’ is more of an outpatient and minor injuries extension to Macclesfield. As I sat down the previous patient came back saying “well he was really nice”, so I was buoyed up before we started! I was seen bang on time.

Caravan went through the pathology report with me. For the cancer recurrence he set up tumour marker and liver function blood tests for February and May (3 monthly)which can be done by my GP – excellent :) And arranged a CT scan for March, to be done at Macc – excellent again :)
He asked if I was aware I’m listed to go on a clinical trial if I need chemo post-surgery. This is the STORM trial, running since 2008. As there is still no proven chemo for Hepatocellular carcinoma, 2 pharmaceutical companies are testing patients taking Sorafenib long term. There is a known risk that 50% of patients who have undergone surgical resection will see a tumour recur within 3 years and 70% will see their tumours return within 5 years. Compare that with breast cancer where it’s more like 25% risk of a recurrence after 10 years and 33% after 20 years. For those wanting to be around long enough to raise their kids to adulthood 5 years sounds a welcome gift for 30%. As in one of my earlier posts, surgery only gives the chance of a ‘cure’ for a few years where the Childs Pugh score is A. Caravan confirmed I’m an A at the moment.


We went through my Hepatitis blood tests. He still feels that Hep B is the most likely cause of all the problems, including the persistent inflammation. It’s down but not out. My body has done well to suppress it without medication into a dormant state, :) but there have most likely been flares in the past and will be in the future. Clinically he treats when it’s active, so for now we rely on 3 monthly monitoring. All my tests currently show that I am ok, including my weight going back up, and there is no indication I need medication. :) The clinic scales logged 9st 3lb with shoes and winter woollies. Fatigue and muscle weakness come with the territory, :( and I must from now on pace myself.
Asking about work he recommended I have a phased return of a few hours each week increasing slowly.
He looked at the notes I’d made about autoimmune hepatitis but hadn’t seen the result of the ASMA test so wrote that into my file. I was relieved to hear him say that the pathology specimens will have been frozen and are kept ‘for years’. He'll get them and look at them himself, specifically for Hep B and autoimmune. This is excellent again, exactly what I was hoping for, as it means no need for a risky biopsy and we should get a diagnosis. :) That’s twice he’s shaken his head at the suggestion of a biopsy – he’s definitely the man! He'll write to me with his diagnosis when he has looked at the tissue sample.
He corrected what I thought he had told me earlier; I’ve not had Hepatitis C :)
I definitely don’t have Hepatitis D :)
He’s booking me in for an endoscopy :( I really don’t want to undergo this but will from now on be scheduled for one every 2-3 years. A life threatening side effect of cirrhosis that I know about, but have pushed to the back of my mind, is oesophageal varices. The cirrhosis scarring prevents blood from flowing through the liver. Extra blood flows through the veins of the oesophagus instead causing the veins to balloon. If these veins rupture, they can cause severe bleeding (hence the patients on House MD who spectacularly vomit blood!) There are treatments to prevent and/or deal with this. His speciality is endoscopy, he’s done 1,000’s, runs courses on them and has written a manual for nurses, but it will still be a first for me.

After a 20 minute run through everything I feel
confident he is the right person to be looking after me at the moment.


Monday, 6 December 2010

Flu jab

Flu jab today. T decided to have one too. This year the single jab is a combination of 2 vaccines, the seasonal flu and the swine flu. We waited for ages with others at the doctors. Then a nurse poked her head round the door and asked us to help speed things up by all having our arms ready - left arm for right handed, right for left handed. An arm hokey cokey - put your left arm out, your left arm in......

Saturday, 4 December 2010

Uncertainty

Haven't been sleeping so well these last few nights. Part of it is going over what I hope for the appointment on Tuesday. I've written notes in preparation but it still pops into my head in the early hours. It would be nice to hear that a 100% definite diagnosis of the liver inflammation can be made using the data we have already, and that some tried and trusted medication will deal with it and prevent the cirrhosis getting worse, but I know it won't happen like that!
I checked with O'Blimey's secretary last week to see what has been sent over to Dr Caravan. My pre-op CT and MRI scans, she said, giggling in an embarassed way when I reminded her Dr Caravan had arranged those in the first place. And my post op blood tests (which wont be any use as they are all normal). Once I'd gone into more detail as to why I had hoped for pathology material she was forthcoming and helpful. She thought it unlikely the pathologist would have been asked to look for hepatitis in the specimen as the focus was on assessing clear tumour margins. She suggests I get a referral to a specialist hepatologist. She could arrange for me to be seen within North Manchester, but sympathised with the distances involved and agreed I would be wiser to ask Caravan to refer me to the Manchester Royal Infirmary hepatologist.

I'm following another blog. This one by a nurse in the US. A 9 year survivor of a rare cancer that starts in the appendix. Similar to Pseudomyxoma Peritonei or PMP which is treated in the UK by the Basingstoke team recommended to me at the time of diagnosis. I'm reading her blog not because of similarities in treatment but because of the words she uses to summarize what she calls being in the 'cancer community'. Here's one thing she says:
"As a member of the cancer community, I have become truly intrigued by the emotional turmoil cancer creates in us. Unlike other illnesses where you are treated, recover and move on, cancer is different. It does not just cause physical turmoil, but emotional turmoil as well...and I've come to learn that often the physical recovery is much easier than the emotional recovery, the living with fear and uncertainty after physical healing.
It seems no one uses the "cure" word nowadays, we are in "long term remission". That phrase makes it sound as if we still have cancer, that it just isn't active at the moment......implying that it can recur at any time. Implying that we can never move beyond cancer follow-up testing. My doctors keep checking...and checking...and checking my tumor markers. They've been checking them every few months for years now,
The testing goes on, and on, and on.....
We can't walk away and forever leave the scene of the trauma. We revisit the scene of the trauma with every CT scan, with every tumor marker test. In a sense, it is never over for us, we always feel vulnerable."

All blogs have a space for comments. Comments are good, but sometimes there is a helplessness at knowing what to say, resorting to the 'get well soon' of greeting cards. She writes:
Other peoples comments:
"Let's celebrate, you've recovered from surgery/chemo! Now you can go back to your normal before-cancer life , the tough part is over!'
Actually for most of us, after surgery or after chemo is when the tough part really begins. Those around us don't understand that, at first even we don't understand why we aren't happy and feeling great.
Chemo and surgery were our tools against the enemy, cancer. Now we are vulnerable and afraid, we know how quickly our lives can change and we don't trust the future anymore. We don't know if cancer is hiding and waiting to attack us again while we are defenceless."
http://appendix-cancer.blogspot.com/

Wednesday, 1 December 2010

Birthday

It's T's birthday. HAPPY BIRTHDAY.

Starts off with cards and presents. All fine so far. Off to work in the snow. He decides to walk to the station in the morning, about 45 minutes, as the roads are icy. I get a call later to say the trains were pretty much on time and Manchester clear of snow. Another call just before 4pm to say he's catching the 4.20 train home that stops in Prestbury and he'll walk back from there. He's left his mobile at home by accident so I dont expect to hear again.
Then at 5.45 a call from a payphone on Stafford station. The train was diverted without warning and he has to wait for a 6 o'clock back to Macclesfield. It's snowing in Stafford and the train only goes as far as a connection to Stoke on Trent. If all goes ok he should be back at Macc station by 6.45 but has no cash for a taxi. Walking home on icy pavements won't be fun.
What a rotten birthday.
Update. The train T hoped to catch was cancelled. And the next one. The first train running left at 6.30, according to the website a mere 3 minutes late despite coming all the way from Bournemouth! I'm hoping he got on that one, due into Macc at 7.15pm.

Tuesday, 30 November 2010

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.

Thursday, 25 November 2010

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!

Tuesday, 23 November 2010

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!

Monday, 22 November 2010

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.

Thursday, 18 November 2010

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!

Wednesday, 17 November 2010

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.

Tuesday, 16 November 2010

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

Monday, 15 November 2010

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.

Friday, 12 November 2010

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.

Thursday, 11 November 2010

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.

Wednesday, 10 November 2010

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.

Tuesday, 9 November 2010

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.

Monday, 8 November 2010

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.

Sunday, 7 November 2010

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.

Saturday, 6 November 2010

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!

Friday, 5 November 2010

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.

Wednesday, 3 November 2010

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.

Tuesday, 2 November 2010

Birthday wishes

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

Sunday, 31 October 2010

4.30am

Clocks went back so in old time, 5.30am. Achey and fidgety, disturbing T. Also having strange dreams, the last involved facing a tiger who jumped out of the hedge in our back field (damn you, codeine), so finally get up, come downstairs, make cup of tea (trusty British cure-all), slices of toasted tea cake (carboloading), and log on.
Muscle wasting and weakness was the sudden onset symptom that took me to the doctor in May. No medic has confirmed if it was the cancer, the cirrhosis or the hepatitis. Now I only have the cirrhosis left (or at best fibrosis with borderline cirrhosis according to my Fibroscan) it must be that. The effect is that when my muscles are used for something unaccustomed they react hours later as if I had run a marathon or climbed a mountain. At the same time, if I sit around too much I get twitchy and have to take some exercise, including during the night. So each time I wake (every 3 hours or so) I have to get up and walk somewhere (usually the bathroom). Maybe I should put my yoga mat down in the bedroom and do a Salutation to the Sun stretching routine every time I wake and call it a Salutation to the Moon! I've looked a number of times but haven't yet found a forum similar to the Macmillan or CRuk where people have cirrhosis or similar symptoms. Cirrhosis can be reversed if you remove the cause: alcohol, hepatitis. Accordng to my last blood tests taken by Caravan-a-nan, the hepatitis has been subdued again, so what now......?
Searches of PubMed online are interesting. I've found research publications by both my liver specialist and gastroenterolgist. Don't read the full articles, wouldn't understand the medical terminology, but the abstracts are a good enough summary for my pea-brain. Some research shows that patients with cirrhosis have metabolic acidosis after exercise (an accumulation of too much acid to you and me), which results in excess lactate, the 'burn' that athletes get. Not that I've ever run 100 metres against Usain Bolt, but this is the feeling I have been describing from day 1.
5.15am. Still here. Have just checked my email and found message about post op days from liver lady on Macmillan. She is monitored at Addenbrookes which has liver specialists. Quick online search reveals that Addenbrookes offer all patients with chronic liver disease support from a specialist dietician. Because: "Patients who have chronic liver disease have a range of nutritional issues" and "Muscle wasting can be reduced in patients with cirrhosis by eating starchy carbohydrate snacks between meals and at bedtime" How useful are these forums! Thanks so much Ess. Once I've had more sleep I'll check this out further. Have had no professional help or advice on diet so far so help/advice from fellow patients is really useful.
Back to bed zzzzzzzzzzzzzz

Saturday, 30 October 2010

Regressing a little

Had less pain over the last few days and also reassurance from Clare the Macmillan nurse that what I do have is normal 5 weeks after major surgery. Did a bit of desk tidying yesterday, some laundry, some photo printing for a Discovery Centre enquiry and a brisker than usual walk to the paper shop and back today, and felt fine. By 6pm the pain is back and reluctantly have taken a co-codamol. The first for about a week. I hate taking them as they make me feel queasy and woozy. So its comfort food for tea (fish fingers!) and watching Wallander on BBC4 later from under a blanket on the sofa.
And progressing a little. 8st 12lb - yay. A co-poster on Macmillan’s forum had a liver resection in October 2008. She had a 22cm tumour removed. (Yes 22cm; that's over 8 1/2" to us pre-metric oldies. Mine was 1.6cm!). She lost the whole left side of her liver and a small portion of the right. Her liver has fully regrown. She lost a lot of weight after the op. At 5ft 5” went down to just under 7 stone but now weighs about 9 ½. I’ll get there in the end, hopefully quicker than 2 years!

Thursday, 28 October 2010

Baggy trousers

My baggy trousers have arrived. To fit my size 16 tummy (with lunch-sized portion of Reggae reggae pasta chicken inside). With a small tuck they will fit my size 10 bum too! Wearing them now and feeling more comfortable.
Following the advice of blogger extraordinaire Dizzie on CancerResearch.uk I've been browsing and adding my name to 'follow' some other blogs. A few common themes appear:

the Waiting theme; "a large part of our lives on this cancer journey involves waiting, waiting in hospitals as the appointment system fails, waiting for treatment in said hospital, waiting for tests and then the long wait for their results, waiting for my scan results to come through in the hope that the cancer hasn't spread further, waiting for this, waiting for that and waiting for the other! - jazzcatx2"
The Food theme; everyone loses weight and spends blog time recording their weight or how much they ate or how horrid it tastes while on chemo (thankfully I have been spared that) or how sick/nauseous they feel not fancying food but aware of their weight loss and trying to eat.
8st 10 1/2 by the way, and 32" so I've lost a bit somewhere. Hope the above chicken was worth 1/4lb.
The Supplements: All of my work clients have their trays. boxes or packs of pills everyday. My job includes checking they've taken them each day at the right time, with or without food. I've joined in with my morning row of pills and potions. The measure of lactulose, the capsule of acidophilus, the multi-vitamins, the glass of tincture. I'm no good with pills so mine are all liquid. I slosh instead of rattle.
the Pain relief: It baffled me why post op, after being taken off morphine (Step 3 pain relief), I was given paracetamol (Step 1). I thought of it as a mild pain reliever; safe for teething babies, not something for surgery pain or cancer pain. But it seems common practice to give it alongside an opioid (Step 2) such as codeine. While others juggle opiods, morphine derivatives and analgesics for breakthrough pain I've escaped with nothing stronger than Step 2 for a few days. I'd like to avoid oral meds if possible as they are another thing metabolized by the liver. The only way to get round that would be suppositories (aaragh), under the skin or intravenous.
Sleeping: It's not unusual to find a blog or forum post written at 4am or similar wee small hour of the night. Chemo finds people sleepless and sweaty (again I'm lucky to escape that). I do have restless nights, waking up every 3 to 4 hours to move and stretch as i seem to be stuck in whatever position I have dozed off in. Still cant lie on my left side where the drain incision was and spend some of the night propped up at 45degrees.

Wednesday, 27 October 2010

New look


When I finished work at the pharmacy the girls gave me a voucher for a treat at our local hair & beauty salon. As one of them has been through a tough time with non-Hodgkins lymphoma she made the best choice of treat. Having felt I'd aged 10 years in the last 5 months I hope I've started to lose it again with new haircut.

Tuesday, 26 October 2010

A couple of slobs

It's half term and it's raining. T goes off to work and I slob around in bed til 10.30. My excuse is that J woke us up at 1am feeling sick and promptly fell asleep again leaving me restless for the rest of the night. J finally surfaces aroud 12.30 and we order a delivery of BOGOF pizza to be watched in front of an early episode of Greys Anatomy on DVD. Pizza is definitely on my 'not advisable to eat' list so I'll see how sick I feel after!
With Hugh Laurie and House MD episodes on the daily must watch list, and now a borrowed Greys Anatomy while we wait for House Series 6 from Amazon, what is this fascination with medical dramas? On a number of occasions during the 'diagnosis' we watch an actor throw up blood or turn yellow and we shout 'liver failure' at the screen!

5.30pm Managed 1/3 of the pizza at lunch with no ill effects but had to make a salad of couscous, avocado, cucumber and tomato to balance it out! J ate 1 and 1/2 pizzas before exploding.
I'd joined the Macmillan forum a while back but have switched allegiance to Cancer Research. The Macmillan one had become either a debate between the admin people and a group of posters who wanted to be allowed to name and shame hospitals and consultants or a sad roll of people who had died. Too depressing.

Monday, 25 October 2010

Other bloggers

Weight: 8st 10 3/4 lbs:
Same as 5 days ago.
Waist 32 3/4". Realised the reason my trousers were tight is the label says size 10! Ordered a size 14 and 16 of the same style off the M&S website. Trouble is my bum and thighs have wasted to a size 10 while my waist has grown to size 16.
Yesterday I ate: muesli, weetabix, banana, boiled egg and toast, baked potato mashed with Philadelphia cheese, ham, avocado cucumber and tomato salad, small portion of bread & butter pudding, fromage frais, drop scones (when T and friend returned from walk), pork stew with rice and veg, ice cream, cornflakes.
Not sure I have room for more in a day!
Achievement: having a 'sit up' bath on my own without needing to be hauled out. Lovely Champneys baths products - thanks pharmacy girls.
Found some links to other blogs on blogspot. Notice a number of similar themes:- the frustrations of waiting; for appointments, results, etc. The frustrations of having to chivvy and chase the aforementioned. The wonderful NHS support staff in particular the specialist nurses. The wonderful support of family and friends. The tiny achievements of a good day after bad ones. The surprise (to me) discovery that most people are taking supplements/vitamins etc as self help in between nasty chemo/radiation treatments (wheatgrass seems to be the popular one for colon or other digestive system cancers. Something to do with diets high in chlorophyll being good for colon cancer). Perhaps we've all realised our diets/lifestye hadn't been that healthy and now is a good time to improve. The determination for 'normality' while reading between the lines the knowlege that the C word is always there. It was there, it's temporarily gone, you are incredibly lucky if it never comes back. In most of the bloggers cases around 50% lucky.

Sunday, 24 October 2010

Supplements

Lovely sunny day. Bollington is in the midst of a 2 week walking festival event. T has gone on the 'Ridge Raider', an 11 miles, strenuous, mostly hill walking ramble through Harrop Valley, up to Rainow, down into Dunge Valley, up to Pym Chair and back via Jenkyn Chapel.

Having had temporary muscle paralysis during anaesthesia I'm not up to an 11 mile strenuous hill walk!

Along with painkillers I was discharged from the hospital with lactulose (to get digestive things ‘going’ again). Noticed on the bottle it’s also prescribed for a complication of liver disease caused by too many toxic substances in the blood normally removed by the liver including ammonia. It’s also considered a prebiotic because it enhances the good bacterial flora in the intestine. So I’ve carried on taking it, alongside a daily dose of acidophilus – the stuff in Yakult advert ‘I just want to be appreciated’ talking stomach (voiced, apparently, by Edward Enfield father of comedian Harry, as an aside of useless information).
At pre-op I was asked if I was taking any supplements and they didn’t seem surprised by milk thistle. So I’ve carried on taking that every day. Milk thistle has been a topic of clinical and pharmaceutical research for many years, it’s not a whacky health food store promotion. It’s known to have anti-inflammatory as well as anti-metastatic (metastasis is the spread of cancer cells) activity. It’s also been used for a number of years alongside other therapies to prevent or reduce chemotherapy.
And finally, vitamin deficiencies are common with cirrhosis because the liver is the organ responsible for converting vitamins into a usable form within the body, so I have a multi-vitamin supplement with A, D, E and K as these are the fat soluble ones stored in the liver.

Friday, 22 October 2010

Better news

Email reply from Clare my Macmillan nurse 5 days late! At our initial meeting she said she would always get back to me within 12 hours. Hey ho. Anyway the news is that because the resection was so small Mr O'Blimey doesn't think a CT scan prior to check up is necessary. I had a lot of radiation as part of the diagnostic process so I guess one less dose (and one less 3 hour drive) is a good thing.
I speak to Dr Caravan-a-nans secretary and she is anticipating I will be signed off from the North Manchester Clinic once I have had my outpatient appointment and that all future care (including scans and blood tests) can be done locally, which is a relief. I'm amazed she has my file on her desk. Apparently while there are loose ends she won't return the file to the hospital library. Having it to hand prompts her to keep a check on things she says. The post is unusually late today but late afternoon a letter from North Manchester Hospital drops through the letterbox with a check up appointment for 4th November. Coincidence or what?

Thursday, 21 October 2010

Sigh!

It's now nearly 4 weeks since surgery and I've been expecting a letter advising when to go for my pre outpatients CT scan. This should be 2 weeks before the OP appointment so the consultant radiographer has time to write up a report and get it to the surgeon before I see the surgeon. I should see the surgeon at 6 weeks, so we've reached the 2 week cut off point.
I also need a raft of blood tests for the surgeon to compare with older ones:- AFP (my tumour marker), full blood count, liver function, kidney function, bone biochemistry and c-reactive protein.
So I call the surgeon's secretary. Lucky I did. Apparently the hospital should have booked these multiple appointments the day I was discharged but nothing has been done. It's too late now to get the CT done by my Macclesfield gastroenterologist so we will have to make 2 separate trips to North Manchester, but it's still possible to have the blood tests done at my GP practice. I rattle off the list of ones I reckon should be done and the secretary sounds a bit stunned! She says she'll double check on the computer in case I've missed any.

Wednesday, 20 October 2010

Bridget Jones

J has to write an English 'A' level homework in the style of Bridget Jones diary. Here's mine.
Weight: 8st 10 3/4 lbs. Hurrah.
Waist: Back up to 33". Boo.
Diet: Muesli,weetabix, tea, toast, boiled egg, more toast, macaroni cheese, ham, baked beans, sweetcorn, salad, no sugar apple& raisin cake baked by Ruth (yum, thanks Ruth), apple juice, apple, eccles cake (felt a bit queasy after that - 9% butter plus vegetable fat), local butcher's pork and apple burger, (lots of apple today) roast parsnip, mash potato, fromage frais, cornflakes.
Exercise: Walked 1/4 mile to the paper shop and back. Hurrah
Activity: Karen has introduced us to Sudoku and T wanted the Guardian to try the next level, hence the walk.
Completed 2 and 1/4 of my NVQ level 3 workbooks. Hurrah. Still have 1 3/4 to go. Boo.

Riverford Organics www.riverford.co.uk deliver a box of English apples, parsnips and carrots plus oranges, bananas and a large melon. They taste so much better than supermarket varieties. We don't eat enough English apples and orchards are in decline but this year's weather has produced particularly sweet fruit. Tempt J away from donuts to a lovely juicy orange as an after school energy boost. For someone claiming not to like 'bits' in juice he concentrates hard on squeezing every last drop from the orange halves.

Monday, 18 October 2010

Saturday headline

The Independent's front page headline is "warning over Britain's addiction to codeine".
20 million people have it prescribed and a further 27 million packs are sold over-the-counter in its multitide of forms: Panadol, Solpadeine, Nurofen plus, codeine cough linctus etc. In the pharmacy packs of co-codamol (8mg codeine/500mg paracetamol) were one of our fastest OTC sellers.
I took a 30mg codeine from my hospital discharge pack at 2am last night. Tried cutting it in half but it crumbled away. The drain area was painful again and my pack of co-codamol was downstairs and would have meant waking T. It was 2 hours before I got back to sleep and at 8.30 I woke with a hangover. Spent virtually all day crashed out on the sofa and the headache didn't go til about 5pm. I discovered from the news article that codeine is broken down into morphine by the liver. Maybe I feel so toxic because my liver's response is different.

Diet diary: muesli/whole weetabix, 1/2 teacake, soup&sandwich, 1/2 teacake, gammon/fries/peas/banana, cornflakes = weight + 1lb @ 8st 91/2.

Saturday, 16 October 2010

Recipe ideas please

Waist down another inch as fluid build-up continues to clear. Consequently I'm more comfortable and mobile. Lost about 3" since the surgery.
However this is revealing my true body weight, which is down about 1/2 stone. Not good. I've been reading up on nutrition. The recommendation seems to be a high carbohydrate diet of about 60-70% carbs, 20% dairy, low saturated fat. No red meat, no processed meat, not too much cheese. Low salt so limited processed foods.
A damaged liver doesn't store glucose well, hence tiring easily. It's recommended to eat 5-6 small meals a day, giving short term energy boosts as I can't store reserves.
The liver also stores Vitamin A, D and B12, so I could do with foods rich in these.
Friends have been bringing cakes, biscuits and chocolates for treats, but the high sugar/fat content won't give me the right balance of nutrients. However things like homemade banana cake, or cakes/biscuits made with honey not sugar, would be ok.

Recipe ideas gratefully received for light meals or snacks that are high carb, low fat, low salt, non-processed! The rest of the family still need their balanced diet, and J in particular is a big meat eater and enjoys his iron rich, high protein foods. So main family meals need to be a compromise between them and me, but my solo meals and snacks can be as different as you like. I like fruit, veg, pulses, pasta, rice, potatoes, couscous, nuts and dried fruit. My typical diet at the moment (which might sound ok but isn't putting back the weight) is:
Breakfast: Muesli, 1/2 a Weetabix, 1/2 banana, milk. Cup of tea
Mid morning: Boiled egg and toast, tea
Lunch: Yesterdays left-overs if rice or pasta, otherwise something like a baked potato, tuna and salad. Fruit juice or water
Afternoon snack: Tea cake or toast, or crackers. Fruit. Tea
Supper: Small portion of family meal. Water
Bedtime snack: Cornflakes. Water

SNACK RECIPE IDEAS PLEASE!!

Friday, 15 October 2010

Bed at last

Back to sleeping in bed. Dosed self with painkillers as recommended by GP and T and settled down propped up on pillows and cushions. Had a good night, only stirring twice to stretch and change position. Don't think I disturbed T too much. He was exhausted after a days countryside volunteer work with KRIV. Working with a team of 14 restoring a Victorian mine ventilation shaft built in the style of a castle turret. It's become a local folly in the grounds of our local GP's home. It's visible across the fields from our back windows, so I was able to wave through binoculars when they were sitting having picnic lunch.

Wednesday, 13 October 2010

Building up

Had a bath with the lovely Champneys products the pharmacy girls gave me, and a hairwash, this morning. Followed that by some light dusting in the bedrooms (supervised!) while T stripped the beds and hoovered. Helped with 3 loads of laundry including pegging some out in the sunshine. Plus a bit of pottering in the kitchen washing up and making meals. Watched a 2nd episode of 'Bones' on DVD and then crashed out to sleep on the sofa. Now I feel a bit fragile so T waiting for J to come in from school before he goes to the shops. I've probably overdone it but need to build up strength too. Bit of a balancing act.

Tuesday, 12 October 2010

Home visit


Dr came round. Sorted out my worries. Everything looks fine but he reminded me (as does everyone else) that I mustn't forget I've had major surgery. Also that I should go back on the painkillers at bedtime to make sure I get a good night sleep. Seems I'm an impatient patient.
He forgot to bring my sick note. Hey ho, T will have to go fetch it after all.
Val my neighbour took me for a walk in the sun but I feel a lack of exercise today, so swept the floors downstairs. Probably not on my 'allowed to do' list. T working late today so J doing tea for us both. We make a hash of it and burn what's under the grill. Luckily we need to empty the freezer for defrosting so take out a second batch 0f convenience foods. May watch an episode of 'Bones' from an old DVD as it would be a shame to watch House MD without a full house.

Monday, 11 October 2010

Sick notes etc

Work called this morning to see how I'm getting on. My hospital sick note has been posted backwards and forwards a couple of times and has only just arrived at the office. It ran out on 5th! Luckily my GP makes a home phone consult today and 'backdates' a 6 week note to the 5th.

The fluid in my abdomen hasn't drained. I still have pain in the drain area which radiates through to my back when I lie down. Over the weekend I started to get discomfort eating, though have a good appetite and no indigestion. This morning I woke with oedema in my feet again. The GP is calling tomorrow to make an assessment. I thought he might put me on diuretics but he thinks a scan will be the best diagnostic tool to see if it's blood or fluid from the surgery.

Saturday, 9 October 2010

Tennis


Played a few games of tennis with J today.

OK, not really. Wii tennis! Sitting down. Got my arms, shoulders and back muscles exercised.

Friday, 8 October 2010

The Bollington network

An advantage of living in a small(ish) community is many people are within 'two degrees of separation'.

I need a sick (or Fit For Work) note from the GP but the doctor who had been looking after me was covering maternity leave and has left. I call the surgery for advice and a familiar voice but not a regular receptionist answers. It's Carol, one of the practice managers, who by chance is covering reception. We've known each other from pre-school playgroup days. She sorts out my 'fit' note and organises for my case notes to be the responsibility of one of the 7 doctors so that I won't have to repeat myself if I need an appointment.

It's a balmy day, and Val my neighbour takes me for a walk down the road. Past 8 houses and back this time, it was 6 before!

Thursday, 7 October 2010

Good news

Late Wednesday evening I get a call from Clare my Macmillan nurse. It's good news. The biopsy shows that although it is a hepatocellular carcinoma its small size and no spread of cancer cells into surrounding tissue mean I won't go on to have chemotherapy. Of the multitude of blood tests taken 3 days post op all but 2 are back within normal range. My albumin levels (see older post for ascites) are a tad low. A c-reactive protein level which measures post operative stress is a little high but still within normal range which means Mr O'blimey did what was needed with minimal trauma.

Because I am not now to be passed to an oncologist my post op care is back in the hands of mr O'blimey. After my initial 6 week check I will return to North Manchester for regular scans and blood tests. There will be close checks for recurrence.

T is working late today, so when just before tea-time a dripping tap suddenly bursts into flood (washer gone) I flap. Hot water is flooding the utility sink and all I can do without bending. stretching or lifting is turn the hot water setting on the boiler down to cold to stop the house turning into a sauna. Rod next door comes round to show J how to grovel under our sink and turn off the stoptap. Rod is 70+ and can't get into the small space while J is flexible like a snake and manages it! Luckily other neighbours are also our plumbers, and within seconds of returning home Tim comes over and replaces the washer. Phew, panic over.