Another year gone by ...

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.

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.

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

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

http://happy-valley.org.uk/discover/discover.htm

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.

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!!

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.

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!

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

:) 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.

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......

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/

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.