Reason to become a donor - No 1.

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

Last 5 days

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

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

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

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

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

This time it's personal

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

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

Stars and sparkles

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

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

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

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

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

Weight

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

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

My big fat Greek diet

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

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


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

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

Homer Simpson yellow

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

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

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

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

Procedure failed

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

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

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

Clues

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

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

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

Transplant man

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

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

CT scan

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

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

New liver cancer leaflet

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

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

It's even in one of my favourite colours!

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

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