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

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!

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.

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.

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.

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.

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.

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?

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.

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.

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.

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!!

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.

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.

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.

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.

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.

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!

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.

Staple remover

11am. District Nurse - who spots MIL's landscape (above) and has a father who lived in Kirkby Stephen! - comes to take out the staples. Almost painless.

My abdomen is slightly swollen and though it's most likely from the surgery she recommends I take a waist measurement every 2-3 days as I need to check for a common side effect of liver disease - ascites. My blood serum levels of albumin - which have been normal up to now - are a tad on the low side. Albumin is a protein made in the liver. It maintains the amount of blood in the veins and arteries. When levels are low fluid can leak from the blood vessels into surrounding tissue causing swollen feet and ankles. In more severe cases it leaks into the abdomen - ascites.

My waist is 1" more than pre-op, but that could be the inaccuracy of our only soft measuring tape designed to plot dimensions of IKEA furniture!
Weight is 4lb down on pre-op. So the challenge is to put on weight but lose it from my waist ... mmm. Measure T's waist too. The IKEA tape is only just long enough! He wants to lose both weight and inches so throws out all the chocolate biscuits. I don't eat them anyway. Immediately we have a fancy for chocolate cake.

Feel well enough this evening to make everyone pasta bake and eat a hefty portion myself. Poor J suffering with horrid cold so he follows the old maxim 'feed a cold to starve a fever'.

Sneeze

I sneezed yesterday evening and tweaked something. Spent an uncomfy night while 30mg codeine spaced me out and made me feel sorry for myself instead of keeping me pain free. Spoke to the District Nurse today and she suggested switching to co-codamol 8/500 which seems to work better.

Short walk

As it has been a gorgeous sunny day T took me for a tiny walk along our road.

Friday Saturday Sunday

Quite a few visitors over the last few days. All much appreciated. (An anonymous visitor left 2 books in a Tesco bag hanging on the door handle - 'Brick Lane', and '80 years of the Guardian crossword'. If it's you, let me know via email so I know where to eventually return). Very tired afterwards, at least I only have to topple sideways to go to 'bed' as I'm still on the sofa. Watched 2 episodes of Cranford "where gossip is a national treasure" on DVD - perfect for some gently amusing viewing (I can't risk side splitting laughter) ....thanks Ruth.

Made it up the stairs for a bath. Well a variation of, i.e. me sitting on an unpturned plastic box in our bath and T pouring lovely hot soapy water over me. Changed the dressings - everything looks healthy.

T has been working hard as cook, cleaner and care assistant, so this evening

we're going to have a takeaway curry and watch an episode of House MD.