Tuesday, 28 December 2010
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:-
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 ...
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
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
Friday, 24 December 2010
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.
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.
Wednesday, 22 December 2010
Saturday, 18 December 2010
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.
Tuesday, 14 December 2010
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”.
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:
A A Milne, Now We Are Six 1927
Other bloggers pet hates:
“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. “
“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
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
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
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
Saturday, 4 December 2010
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."
Wednesday, 1 December 2010
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
Thursday, 25 November 2010
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
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
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.
Thursday, 18 November 2010
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
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
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
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
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
Thursday, 11 November 2010
Wednesday, 10 November 2010
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
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
Sunday, 7 November 2010
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.
Saturday, 6 November 2010
Friday, 5 November 2010
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
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
Sunday, 31 October 2010
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......?
Saturday, 30 October 2010
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
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
Tuesday, 26 October 2010
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
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
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
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
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
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
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
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
Friday, 15 October 2010
Wednesday, 13 October 2010
Tuesday, 12 October 2010
Monday, 11 October 2010
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
Friday, 8 October 2010
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
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.