Reason to become a donor - No 1.

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

Last 5 days

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

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

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

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

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

This time it's personal

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

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

Stars and sparkles

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

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

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

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

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

Weight

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

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

My big fat Greek diet

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

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


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

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

Homer Simpson yellow

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

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

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

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

Procedure failed

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

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

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

Clues

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

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

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

Transplant man

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

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

CT scan

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

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

New liver cancer leaflet

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

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

It's even in one of my favourite colours!

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

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

X marks the spot

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

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

Ow, ouch, zzzzzz

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

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

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

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

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

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

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

Now the going gets tough

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

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

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

Positive blood test results

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

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

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

Bloods today

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

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

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

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

Discovery

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



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

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

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

Doctor's diagnosis

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

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

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

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

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

Still in remission

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

Three months later it's dropped further to 1.

Great news.

Stiffness diary

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

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