Monday, 28 February 2011
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.
Saturday, 26 February 2011
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!
Thursday, 24 February 2011
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.
Wednesday, 23 February 2011
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.
Tuesday, 22 February 2011
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.
Sunday, 20 February 2011
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.
Thursday, 17 February 2011
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.
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'.
Tuesday, 15 February 2011
Sunday, 13 February 2011
We carry on so that I can have a look at the field boundary hedge-laying work T & fellow Kerridge Ridge conservation volunteers have been up to.
This ongoing project involves the conservation of natural and historic man-made features in the landscape including the repair and maintenance of rights of way and field boundaries and management of meadow and woodland. The volunteers, all previously unskilled, have been trained by the British Trust for Conservation Volunteers. I think the hedge looks pretty good and will last about 15 years before needing more work instead of the annual autumnal 'flail' cut from a tractor. A properly 'laid' hedge also gives much needed habitat for small mammals and birds.
Sunday am: Hands have swollen overnight, painful knuckle joints again. Neck, upper shoulders and collar bone area stiff again. Legs lacking muscle tone. Anti-inflammatory effects lasted about 36 hours.
Friday, 11 February 2011
Completed the walk at 12 noon.
Thursday, 10 February 2011
For the last 4 months I've been a member of 2 online cancer forums and 2 online hepatitis forums.
I've met some lovely people amongst the 3,000+ members on the cancer forums, but though some have secondary liver tumours, nobody else has primary liver cancer.
On the hepatitis forums, which have around 2,000 members, I've been in contact with 2 people treated for HCC liver cancer - one in the US and one in Australia.
47,000 are diagnosed with breast cancer in the UK each year and many women write breast cancer blogs. Compare that to 3,400 diagnosed with primary liver cancer (about 1% of all UK cancers) and I've yet to find another blogger (although I do follow 2 transplant blogs neither are cancer patients).
In spite of the Liver Trust website there is relatively little patient experience information and support for HCC. Long term survivors telling their stories online seem to be rare. It seems a combination of no standard "chemo" or "radiation" treatments for HCC, like there are for other cancers, and the small number of survivors makes for a lack of information resources.
The success of treatment for all cancers is usually measured in 5 year survival rates, being the period at which it is less likely to return.
Of the 2 people I've 'met' online diagnosed with HCC one has survived 3 years but has a recurrence and the other has survived 5 years with zero recurrence. I've not yet met anyone online who is a >5yr survivor.
Survivor (1) had a resection in 2007 of a 6cm x 12cm tumour (about the size of a large pear). Sections 2 and 3 of their liver were removed (that's about 1/4). Like me they have compensated cirrhosis. Their AFP was elevated 20 months later but it was 3 years (2010) before identifiable new tumours appeared. By 2011 there are 5, and as they are spread throughout the liver resection is not an option. Treatment is TACE chemo.
Survivor (2) had a resection in 2005 for a 1.5cm tumour (grape size same as mine). All of section 6 removed. Compensated cirrhosis. Slightly elevated AFP consistently. No evidence of a recurrence after 5 years.
A 3rd resection patient on a cancer forum had surgery in 2008 for a 22cm tumour (Very large Fibrolamellor - longer than a banana! But not HCC)
Mets in lung 2009; Recurrence within 2 years in lymph node 2010; Removal of lymph node 2011.
Of 2 others whose blogs I follow. (1) has survived 3 years on repeated treatment for metastatic liver cancer (primary is colon). Current treatment regime is SIR Spheres (a form of radiation used in the US but not so common in the UK)
and (2) Has liver mets from a 2009 diagnosis of bowel cancer. Palliative.
9am. Legs ok but feeling a little weak. Neck more mobile. Shoulders and upper back ache slightly but not too bad. Thumb joints on both hands painful.
Wednesday, 9 February 2011
8pm: Update on David K's blog. Transplant successfully complete. Patient under sedation in ICU.
9am. Legs fine again after yesterdays Tai Chi. Upper back and shoulders quite stiff but bearable.
4pm. Neck and shoulders very stiff. Left side of jaw aches, difficult to open mouth. Puzzling over why, decide it's because this morning I used my teeth to pull off one of those plastic tear off security strips that go right round a lid to secure it before first opening.
8pm. Did some warm-up arm and shoulder exercises mid afternoon but am now pretty much seized up in my neck. Can turn a little way to the left but not at all to the right.
Monday, 7 February 2011
5pm. Back from an hour of my first Tai Chi. The warm up exercises are lovely, I can feel my shoulders and arms free from stiffness. But the routine of 'forms' has me completely lost! Trying to co-ordinate arm movements and leg bends is like that rubbing your tummy while patting your head thing. They do have lovely names, like 'parting the wild horse's mane'. Lower back and thighs ache by the time I'm home due to the bent leg posture but worth going again next week and checking out some You Tube videos of the exercises. Oh, and we did do something like that pose in the photograph, which might be called the Intercept and Punch.
Stiffness diary, Monday
Left shoulder where it meets the clavicle is stiff and painful when I go to bed Sunday. Painful in the night, still painful and difficult to move Monday morning. Soak in hot bath, no improvement.
1pm. Drove around delivering photo orders (long story, but see http://happy-valley.org.uk/discover/picarch1.htm if you want) Shoulder stiffness easing.
5pm. Feeling OK. Only residual pain in shoulder.
7pm : Pain back in left arm only this time in the area round the biceps. Lifted an averagely heavy skillet pan, but with right arm.
Night/Tuesday early morning: Right knee around what I think is the popliteal tendon. Left hand knuckle joints.
Tuesday. Stiff around the knee but otherwise ok.
4-5pm Tai Chi
10pm. Stiff legs and left shoulder, but not as bad as anticipated. Off to bed.
Sunday, 6 February 2011
Every autumn the tree was harvested for its cooking apples. And every November 5th
4oz butter (I use cheap unsalted supermarket own-brand not margarine)
4oz caster sugar
4oz self raising flour
2 teaspoons bicarbonate soda
1 teaspoon cinnamon
2 medium Bramley cooking apples or 3 desert apples.
Demerara sugar for topping
Blend the butter and caster sugar until pale and creamy. Mix the bicarbonate of soda and cinnamon into the flour and then gradually mix the flour and beaten eggs into the butter/sugar. Peel and core the apples. Chop into sugar cube size bits. Fold into the cake mix until evenly distributed.
Grease a 10"x9" cake tin and spoon the mixture in. Sprinkle with a generous topping of demerara sugar. Bake Gas 4 (350 F) for 20-25 minutes or until the top is golden and a skewer inserted comes out clean. Cut into squares.
We've also made this with pears instead of apples. It's a bit 'wetter' and has a milder flavour. The quantity of bicarb might seem high but it helps raise the mixture like a sponge cake as the fruit makes it moist.
Yesterday my brain was thinking 'sponge cake mixture' as I prepared things and I absent mindedly greased my 2 shallow round Victoria sponge cake tins instead of the deeper rectangular one. I'd also started spooning in the mixture before my brain clicked into gear, so decided to carry on. It turned out well, and nobody minded the triangles of cake instead of squares!
Wake in the night and find my neck really stiff and throat painful. Sleep for 12 hours and struggle to get out of bed. Find it painful to bend to put socks on.
Take a painkiller.
Better by 11.30 am, background aches only.
12.30. Shopping trip to supermarket. T pushes trolley. Feel fine, only slight ache in upper back
3pm Rooting around in cupboard lifting out photo albums
4pm Legs stiffening
Typing on PC/cooking
6pm. Shoulder joints and left elbow painful.
Saturday, 5 February 2011
Truthfully T did all the heavy bucket lifting while I monitored siphoning the dirty water. Reminded me of T's suggestion to start a diary with the aim of getting a clearer picture of a pattern to these fluctuating aches and pains.
So this is really a diary for me, starting yesterday:
Friday 4th: Lifted heavy old Kenwood mixer down from overhead cupboard and back up again, circa 3pm. (Made apple cake, yum)
10pm. Sharp pain in right wrist. Right arm very stiff and painful, can barely move it. Left arm fine.
By morning, all aches and stiffness back to 'normal' background level.
Saturday 5th. Raining all day, so sat around too much.
1pm. Legs stiff, backside aching from lack of exercise.
4pm. Cleaned fish tank, as above. Await onset of stiffness.
6pm. Evening meal
7pm. Upper shoulders stiff, probably from using laptop too much. Overcome with fatigue and crash out for 1/2 hour. Note to self: need for a nap after evening meal happens quite a lot now. Assume it's hard work for my liver. Makes me feel like a granny.
10pm. Stiff all over. Off to bed.
Friday, 4 February 2011
Dr C must have decided my suggestion to get the AFP tumour marker test result first wasn't such a bad idea. The consultant radiologist must have been cancelled and the bed cancelled - only Barbara forgot to cancel me too!
So poor T had to put his coat back on and come to fetch me again.
Sitting in the main corridor watching the hospital world go by, greeting the odd friend in passing, maybe a trolley in a corridor will be a good way to pass the 6 hours of bed rest! Lots of activity and people watching. I was quite content if a little hungry and thirsty.
Wednesday, 2 February 2011
The blood clotting ones I wanted to check pre-biospy are fine.
Of the ones that monitor the cirrhosis none are significantly 'better', some are stable, one or two slightly worse from 3 months ago. Two of the 'worse' measurements help me monitor the fluid balance in my body which can be an indicator of the dreaded 'ascites' or swollen beer belly tummy that is a cirrhosis side effect. They are only a teeny tiny bit different to last time, suggesting a bit of fluid build up somewhere, but not enough to notice it round my waist or in my ankles etc.
The AFP tumour marker wasn't taken after all. The results take longer to come back and wouldn't have been in time. Spoke to Dr C over the phone to clarify why. Seems I got our communications lines crossed (my lack of Hindu and perhaps a glitch in his English) as to why he had previously said to avoid a liver biopsy if at all possible. What he apparently meant was pre-surgery he wouldn't stick a biopsy needle in while there was a tumour in situ - obvious really! As long as Friday's biopsy needle is guided by ultrasound into the liver they can pick a spot with no sign of suspicious lumps or bumps. Also normal protocol would have been not to check AFP until May, but then I don't do things by protocol! For my own piece of mind I'll get my 'extra' 3 monthly AFP done as planned by the GP next week. I COULD postpone the biopsy until after that, but I suspect a single abnormal AFP (should it turn out to be so, let's hope not) wouldn't be enough to shout 'cancer' until another and probably another or even a CT scan had been done. I've already waited a long time for a result via biopsy in case it tells us anything new, so I'll go ahead.
Tuesday, 1 February 2011
The appointment letter said allow 1 hour. That's 1/2 hour to find a parking space. 15 minutes to find Ward 9. Not so easy when the signage goes 7,8, .. 10, 11. My letter says 'Short Stay Unit' (I think they've directed me to the pay-and-display car park) but none of the signs do. I try the 'Day Case Unit' and the 'Assessment Unit' before being directed to the right set of doors. Remember those NHS days when there was a Day Room for each ward, that stank of tobacco and had one ropey TV in it? Now hospitals are non-smoking and in most wards each bed has its pay-as-you-go TV. What to do with the empty room? Fix another notice on top of the old Day Room one and call it something fancy!
5 minutes for lovely plump Rachel to confidently say in her Brummie accent 'Oi cun get bluud out ov a stown, me', and prove she is right. Then 10 minutes to get the heck out of there.
Rachel is my kind of can-do nurse. Yes she can include the AFP. Yes she can tell me which bloods she is taking. Yes they will be on the computer system in 4 hours. Yes my GP can log into the system or ring the path lab tomorrow and get the results. Yes they will send written results to my GP so I can have copies. Yay!
Of course whether this all falls into place is another thing entirely. Tomorrow I'll ring the GP and hopefully find out if my tumour marker is stable.