Sunday, 18 December 2011
We're supposed to get enough Vitamin D3 from the sun each day. But after a lifetime of northern hemisphere climate, and no vitamin supplements, my first test in April 2011 was 21ug/L (or 21mcg/L). This is right down at the bottom of 'normal' lab ranges, and within the cancer and hepatitis communities is considered below normal.
My second test in November after 7 months of supplements was 81.4 nmol/L.
Two different laboratories using different values - aargh!
I got some help from the liver forum to convert the mcg/L to nmol/L in order to compare, and it seems the first test of 21 = 53nmol/L.
I'd been prescribed the recommenced daily allowance of 600IU per day of Vit D3 as Ad-cal, but this amount wasn't enough to raise the levels, so switched to purchasing my own Solgar product taken at a daily dose of 2,500IU per day.
Even at this level of well over the RDA my level of 81.4 is still below the suggested range of Vit D3 within the cancer and hepatitis communities, which is 100-150nmol/L, so I have increased to 5,000IU per day for a further 4 months to get within this band.
Gives some idea of how likely it is that most of us don't get enough Vit D3 from the sun, and that supplements do work!
Tuesday, 29 November 2011
So that's 14 months cancer free.
At the same time as starting this blog I chose to 'follow' some stories of other cancer patients. Some are in remission and have stopped blogging, or make only the occasional post.
For others the journey continues with further tests and treatment and changing prognosis.
Some have died.
Thank you to everyone who is following this blog.
Here's hoping I'm still blogging same time 2012!
Friday, 18 November 2011
Off to my 1 year cancer free check at North Manchester hospital next week.
Friday, 11 November 2011
I expected to have to wait in line for ages for the blood draw, but the department was surprisingly empty and I was seen immediately. Results of the straightforward ones will be back at the GP by next week, the AFP has to be 'sent away' so will take longer. Hopefully 8 working days is ample and I can go to my North Manchester cancer check up armed with up-to-date results instead of results that are 2 months out of date.
Tuesday, 1 November 2011
By a Dr R J St***. Who is he?
I look him up.
His speciality is lung cancer.
What is going on?
I don't feel like spending time and money ringing round trying to get to the bottom of this. So I've written to heppy doc asking him if he knows about it - his last letter to me clearly states that he will be organising CT scans as I'm under his care now.
And I've made an appointment with my GP to see if he knows what it's about, as I'm due to have some bloods taken anyway for the tumour marker and my Vitamin D levels.
GP is booked up for 3 weeks, so it will be a while!
UPDATE: Wrote to heppy doc (as above) and left message on GI doc's answerphone (secretary) - but a week later, no reply from either.
Thursday, 27 October 2011
Reporting that though the CT showed no cancer recurrance it was, as I suspected, of limited use because of the lack of contrast dye. The contrast dye shows tumours as bright white. Without it they become grey lumps, merging with an already 'lumpy' cirrhotic liver.
Also despite my having previous CT's at Macclesfield which the radiologist should have been given to use as a comparison, nobody had felt like sharing! So they had nothing to even help compare existing grey with suspicious new grey.
Heppy doc is going to discuss what to do about future CTs at the next Hepatobilliary meeting, which makes sense, as there's no point in wasting money on useless procedures.
We need to think of a better method of imaging without using iodine.
Any ideas anyone?
Thursday, 20 October 2011
Thursday, 13 October 2011
Baffled at first as to why the packet was so big and contained 21 pages? They've sent me the printouts from 2 previous clinics - doh. I have these already. I only asked for the September ones which run to 3 sheets. What a waste of their time.
As I suspected, things are having a bit of a wobble with results going slightly the 'wrong' way (albeit still within normal range)
I've been noticeably more tired and achey for a few weeks. This could be any of (a) tired of getting up at 7am and driving 30 miles a day for work and all I need is a holiday! (b) my immune system is having a burst of activity making me feel a bit off (c) the slight AFP rise means a new cancer is forming.
So the plan is do nothing at the moment but take another set in November and see what's what
Wednesday, 12 October 2011
I still have my fingers crossed that after 4 weeks somebody will finally send me the 2 or 3 sheets of paper that contain my last lot of blood tests.
So far the GP secretaries and I have tried to get them via phone, via fax and via email. Apparently the last 2 methods are 'not secure' and the first is too time consuming to read them out.
I find it difficult to believe that companies such as, let's say Apple, don't use the internet for it's communication despite the supposed risk of security lapses. Perhaps they always use couriers or carrier pigeon for any new product plans.
So now I'm pinning my hopes on Dr Al's secretary deciding to break with protocol and use 2 or 3 precious sheets of paper, an envelope and a stamp to send them to my GP.
The whole hassle has decided me to ask for the whole lot to be done again at the GP in November (which will be half way between my September clinic and the January 2012 clinic) so that I can get some up-to-date results within a week.
I'm not even considering asking about the CT results. There's little point in hoping anyone will contact me about it before January. Anyway without the iodine contrast dye the chance of it being any use at detecting tiny new tumours is low. Small non-enhanced liver tumours usually aren't visible in a lumpy cirrhotic liver, so we need a new plan B for the best imaging technique for me, which isnt non enhanced CT.
Thursday, 29 September 2011
It was very quick this time as I no longer have the iodine IV inserted. My notes say I'm allergic to it. I guess the image wont be as clear as one done with contrast dye, but hey ho here's hoping it's good enough.
Very tired when I got back. Had done 2 work shifts before I went and the appointment was slap bang in the middle of city rush hour, so the traffic was awful both ways.
Saturday, 24 September 2011
Friday, 23 September 2011
I meant to clean the fish tank on Wednesday but J invited his girlfriend for supper so I cooked a roast ham and made a macaroni cheese instead
I meant to clean the fish tank on Thursday but watched 'Educating Essex' on Channel 4 instead
I meant to clean the fish tank today but defrosted the fridge ... and then had a lovely bath using the last of my Arran Aromatics bath gel ... so went online and ordered some more instead ... just for me!!
Sorry fish. I'll clean your tank tomorrow.
Monday, 19 September 2011
1) a copy sent to my GP reviewing the July bloods done by the GP and seen by heppy doc in clinic. Heppy doc advises the GP all is well and they wont need to do monthly bloods. Monitoring to be reduced to 3-monthly, done by Salford clinic.
2) a copy of another letter typed up 2 days later - after the September bloods taken at Salford have been reviewed. Three important results are listed: a) my tumour marker; b) my liver inflammation and c) my immune system activity.
c) is stable. a) and b) have gone UP. Between 21st July and 12th September the downward/stable trend has reversed.
Darn it. Now I'll definitely get another set done by the GP in early November, as the liver clinic review in January is too far away for peace of mind.
Friday, 16 September 2011
Here's a thought - how come you, and I, and Joe Public, can send each other via email the most amazing photos and images. But hospital A cant send a picture to hospital B if they belong to different NHS trusts.
So we start again and I have my scan done at Salford, which is on the same computer 'system' as North Manchester. I had a mild allergic reaction the iodine IV last March and am nervous of it happening again. It left me shaky, so I want T to be around to hold my hand and drive me home after. Heppy doc carefully wrote on the CT request slip NOT TUESDAY OR THURSDAY (those are T's busiest work days).
Appointment letter arrived today ... yes you guessed ... Thursday.
Rang radiography and explained my concerns about the iodine. Helpful radiographer looked at my notes and said 'yup, says here you have an allergy, so no iodine IV for you this time'. That's good news, this will be a walk in the park now and I'll be ok to drive myself home. I asked whether the consultant would be informed before the scan, in case he said that an image done without contrast wouldnt be good enough. 'Should be fine', said helpful radiographer, 'we can use a different methodology to interpret the scan'.
Rang appointments to cancel Thursday and re-arrange. Explained how Heppy Doc had written NOT TUESDAY or THURSDAY on the request. Ah, she said, sometimes it has to be done on the day the specialist radiographer is available ... oh no, here we are, yes we can offer you Mondays or Wednesdays.
Ha ha ha.
Tuesday, 13 September 2011
It seems I have become a bit of an oddity. Heppy doc asked if I would give my permission for his team to write up a publication on me. He explained that it's usually patients with a chronic active Hepatitis B virus that progress to cancer. My virus levels have been undetectable for at least 17 years, and he explained it's unusual for a liver cancer to develop that length of time after a virus has become inactive. Also it's not common for someone with autoimmune hepatitis to develop liver cancer.
So I asked "what caused the cancer then?"
"That's what we'd like to know" he said.
He gave me paperwork to authorise them (it will a joint paper by him, his registrar, O'Blimey and Dr Caravan) to publish within the stable of BMJ (British Medical Journal) publications.
By now I'm feeling self-important, and barely caught his mumble about it being 'most likely published in mumblemumble'.
Yes, there is a journal called 'Gut'. Maybe it should become a guest publication on 'Have I Got News for You' alongside 'Drain trader'; 'Gas installer'; and 'World pumps'. All quite suitable digestive organ titles!
Ah well, that was the end of my 15 minutes of fame.
Wednesday, 31 August 2011
A backdrop to the high octane emergency cases are the mundane 'walk-ins' and time wasters, with their cuts and bruises that could be treated at home. Yesterday I felt like an A&E time waster.
After 10 days of patiently bandaging the persistant swelling and increasing pain in my sprained ankle T decided it was time to get a second opinion from a medic on the best strapping so I can carry on driving and working. The best place, I reckoned, was a quick visit to a nurse at my GP surgery. In and out, 5 minutes. No wasting the GP's time. But....
With apologies to A A Milne and his poem 'The King's Breakfast'
"Could we have some strapping for
Fiona's hurty leg?"
Reception asked the Practice Nurse,
The Practice Nurse
I'll go and get the bandage
Before she goes to bed."
The Practice Nurse
She rang us
And went and told
"Don't forget the GP must
first check out the leg."
The Practice Nurse
"You'd better tell
That no nurses nowadays
Can bandage up
And thought it might
She turned to Fiona, and
"Best to get an x-ray,
Off to emergency,
and if its broken,
they'll put a cast on instead."
The Triage nurse said
In X-ray they
imaged it, and sent me back to
sit by a boy who cut his head.
.... 4 hours later ....
The Doctor said,
And then he said,
So I said, "Thank Goodness,
Can you bandage my leg?'
"Could call me
A fussy one;
I only want
A little bit
Of bandage for
The Doctor said,
And went to
Get some bandage
Said, "There, there!"
And went to get some tape,
The Doctor said,
I can do a bandage,
Here we are
I’ve bandaged up your leg"
(And you know, he did it exactly how T had been bandaging it)
Sunday, 28 August 2011
Sunday, 21 August 2011
We didn't have a handy stick of rhubarb (looks more like a baguette to me!) so I'm hobbling around using an upside-down broom for a crutch.
Embarrassingly for J (and T)my trip was in full view of a room of prospective Music Technology students at the University of Keele open day.
Cant drive, so will have to cancel my 3-monthly check with Dr Al at Salford which was scheduled for Monday. It was to review the last 3 months of bloods, but as all is looking stable at the moment I'm sure I can re-schedule.
Friday, 19 August 2011
Monday, 15 August 2011
Sadly a fellow 'Nomad' with Hep B was diagnosed 5 weeks ago with a cluster of HCC tumours and given 2-3 months to live. That's how agressive these sly bu**ers are. Hence my frequency of testing.
For some reason a full set of liver function tests and full blood count were done at the same time - bit of a waste of NHS resources as I had them done 2 weeks before the AFP and only need them taken monthly.
Anyway, the test that measures liver inflammation went down again, in just 2 weeks! Its now 21 instead of in the 80's. 'Normal' is between 10-50. It may be explained as things continuing to calm down after surgery, but as that was 11 months ago I doubt it. My feeling is the improvement is down to a clever herbal supplement called Milk Thistle.
The seeds of the milk thistle have been used for 2000 years to treat chronic liver disease and protect the liver against toxins. I've been drinking it as a tincture since diagnosis.
Thursday, 4 August 2011
On the support forum I help administrate a member who has finally cleared Hepatitis B after a course of drug treatment has been diagnosed with multiple HCC tumours. He's waiting to find out if he can be assessed for a liver transplant. This tragic news came just after I'd posted my positive July blood results and I had to admit that his story will haunt me for a while. Within a few hours of my post, a knowledgeable HCC survivor wrote me this message:
"They excised segment 2 of your liver, apparently with good margins, and you had a single mass? Early stage 2? No lymphatic compromise? If that's the case then I wouldn't be stressing too much about the HCC coming back. It might very well down the track, perhaps a very long way down the track, but it's unlikely to be the same one. Given that you *didn't* have a cluster, and that everything remains fine, then I think your prognosis is good. Obviously I'm not qualified to make that call, but it's my (reasonably educated) opinion. Unresolved HCCs usually come back like a train. If it's been more than a year - and it has by now, surely - then you should be relaxing about it. Relaxing in this context doesn't mean not being vigilant"
Thanks Dallo, if you ever pop by and read this!
Friday, 29 July 2011
T and I came home on Wednesday after a lovely few days away. J on his way back from camping, sunburnt and hungry and no doubt with a rucksack full of smelly clothes!
Friday, 22 July 2011
June's lot were ok. I'll be interested to see these latest, as the last few weeks I've been extra fatigued. Looked at my diary yesterday and realised that since I went back to work in February I haven't had a holiday. Silly me.
Next week we are on our hols. J to Anglesey camping with friends, T and I driving down South to visit family and then have a couple of days to ourselves.
Have collected all the stuff J needs - tent, sleeping bag, sleeping mat (thanks for the tip Dave we now have a self inflating one), cooker, pan, gas canister, plate, mug, washing stuff, boots, socks, waterproofs, basic food rations, beach stuff, spare clothes. Look at the growing pile, look at the rucksack. No way is it all going to fit!
His friend Jack came round and they practiced taking the down the tent. It's a pop-up, so no 'putting up' required - it springs to fully formed in 2 seconds! Getting it back into the carry bag requires 8 extra long arms to hold one side while the other side springs open again. There is an excellent demonstration video on YouTube showing how to fold it up again, but Jack was convinced he could work it out - which he did, it just took quite a long time.
Sunday, 17 July 2011
J filled out his provisional driving licence form yesterday and ticked all the organ donor boxes. Not that I'm encouraging him to become a mangled wreck in a road accident, but 'Cheers J'.
Thursday, 14 July 2011
I'm now settled at around 10-12 a week, excluding the drive time to, fro and in between clients.
Ironically I'm now covering for a sick colleague who has been off for 2 months with a back injury and is likely to be off for another 2 months minimum.
Makes me feel almost normally fit!
I definitely need rest in between the work shifts. But as long as I eat ok and take naps, I'm then good to go til the evening.
Wednesday, 6 July 2011
Such as, walking the Lakeland fells
Climbing the highest mountain in the UK
Yes, that's me
Saturday, 25 June 2011
A well known supermarket has been running TV ads claiming that by shopping with them you can feed your family for £50 a week. My earnings have taken a hit, and my bank balance is struggling to fund the grocery bill, so I took up the challenge.
Their definition of a 'family' is probably 4, but as some student finance guides allow a budget of £35 a week for one impoverished student, I stuck to the £50 for the 3 of us.
Colourful menu pictures in the leaflet showed tasty dishes with pasta and rice. But a large proportion of menus had potato wedges homemade from 'Basics' potatoes. The £50 shopping list had 5 kilos of potatoes on it. This 'family' must be eating a lot of chips! It also had 3 mega sized loaves of sliced cheap bread - presumably for sandwiches/toast. Also 5 large bags of frozen veggies. Our freezer wouldnt take all this on top of what is already in it, and anyway I dont think cheap doughy bread is very healthy.
Once you've been diagnosed with cancer, the quality of the food you buy suddenly becomes more important. You become drawn (if you hadnt been buying it already) toward organic, free range, 'free from' products.
So that ruled out the Basics fruit and veg. And the battery farmed value chicken and eggs. And the fish that wasnt sustainably farmed or caught.
Things were going awry before I even put one item in my trolley!
So I substituted quite a few things, (oh, the list excluded milk, tea and coffee??) and cheated by using local butcher bought things that were already in the freezer. And cheated by using spinach, lettuce, strawberries and raspberries that are now lush in the garden.
I made it with an overspend of £12 (having excluded the food treats J took to a friends house one day).
What did we eat for our £50. Cereals or toast for breakfast (homemade marmalade - another cheat, oops!). Sandwich or salad meals for lunch - made with bakers bread and some salads from the garden. And pasta/bolognese/rice/curry (free range chicken)/burger/stir fry type evening meals with organic veg and fruit crumble or yogurt puddings.
What did I learn? That you can do a budget shop at a top range Supermarket. But that personally I wouldnt want to eat half of the budget range due to bulking with additives or the product not being grown/fed in a chemical additive free way.
Next challenge - see what J and I can buy and cook on the hob for one week of student 'quick' healthy easy meals for £35.
Friday, 17 June 2011
I'm not on any medication. I take a herbal liver supplement called Milk Thistle, Vitamin D3, a multi-vitamin and mineral tablet and some extra calcium and magnesium for 'dem bones. I eat no red meat, avoid saturated fats and vegetable oils and have cut right back on salt.
My 3rd and most recent lot of blood tests under this new monitoring regime are looking good.
The tests that monitor inflammation in my body have dropped further and are in the normal range. My liver tests are 'normal', which for me just means 'stable' as we know from the tissue biopsy that the liver isn't 'normal'.
The only thing way out of range is the tests monitoring my immune system, which show its still operating at twice the business it should be, trying to clear an imaginary disease. It needs a rest!
Monday, 13 June 2011
Friday, 3 June 2011
These blood tests will check my clotting, my levels of inflammation in my body, how well my liver is dealing with toxins and fluid balance, and how much it's managing to store in the way of vitamins and minerals to keep me healthy. We know at the moment that I'm low in Vitamin D, iron, calcium and sodium.
I've been added as a member of the Admin team on the hepatitis support forum mentioned earlier. A good excuse to be 'busy' while sitting down in front of the PC! There have been a few members with scary moments recently - one with liver failure, one with gastric bleeding, and one where ascitic fluid build up in the abdomen got infected. All examples of why liver disease needs close monitoring and decisive action from the medics if things start to go awry.
Had a lovely day on Wednesday when I met family for a day out here:
With an old fashioned steam carousel
Work has got busy. My hours have doubled for a couple of weeks, as they need cover for sickness and holidays within the care packages I'm part of. Should ease off again eventually.
Friday, 27 May 2011
Tuesday, 24 May 2011
This time I'm getting the same sedation as Part I, plus an anaesthetic throat spray, plus a drug called Fentanyl which I've only come across as strong pain relief for cancer patients - so not sure what the thinking is behind this last one.
I guess I'll be zonked senseless and sensation-less. I hope I can swallow as soon as I come round or it will freak me out.
At least it's at 8.30am instead of 5.30pm so I dont have to starve myself all day or get more and more anxious.
Will report back once home again.
Home again. Procedure completed this time. My GI consultant did the procedure himself, with the tube designed for babies - how cute!
No varices in the oesophagus. Signs of mildly dilated blood vessels in my stomach caused by the blood pressure changes. No immediate action needed, follow up in clinic.
So a relief to get that out the way and to know it doesnt need to be done again for 2-3 years.
I was heavily sedated with a variety of morphine based products so came home, had some porridge and went to bed for a few hours. I'm still 'not all there' and under hospital instructions not to cook (hurrah) for 24 hours as well as the usual no driving or using heavy machinery!
Have taken 2 days off work, so plenty of time to rest and be pampered.
Friday, 20 May 2011
HepCNomads are an online group of friendly people that have or had hepatitis C. Some of them have been through a treatment programme and cleared the virus, some have not. Some are supporters or carers of family/friends with the virus. Significantly, they provide a lot of online emotional support from people who understand what it is like to have hepatitis.
It's also an educational forum where people planning on starting treatment can learn about treatment, how to prevent side effects and how to maximise their chances of achieving treatment success. Those not going down the treatment route can learn how to care for their liver.
Nomads are well thought of by The British Liver Trust.
Having browsed the internet and not found a good online support forum for Hep B, I joined Nomads. And was welcomed into the community without question.
So if you are reading this blog because you have, or know someone who has, hepatitis click this link
Saturday, 14 May 2011
Wednesday, 11 May 2011
Letter arrived today telling me my 'T score' (whatever that is) is -1.9 and is in keeping with osteopenia. Which seems to be a sort of pre-osteoporosis. And that I must go to my GP for meds.
I hope I can treat it with extra Vit D (ha ha, already am) and calcium. I really really do not want to take bisphosphonates. They do horrible things to your oesophagus and digestive tract - not a good idea if your oesophagus is already compromised with the cirrhosis.
So more research into alternatives before going back to the Doc for his opinion.
Tuesday, 10 May 2011
He'd had time to mull over his original treatment plan for his diagnosis of ‘probable’ autoimmune hepatitis alongside the chronic inactive Hep B. He'd also had time to do what I did which is research existing/previous cases. And like me, only came up with 2 documented. So it's rare to have co-infection of Hep B and Autoimmune.
He spoke to his ex-boss and his mentor, both at the Freeman Liver Unit in Newcastle and between them they came up with 2 options:
1) no treatment but monitor more closely than I am being at the mo;
2) treat with a combination of drugs for the low level inflammation and some more drugs to protect againt the risk of the Hep B reactivating.
They've gone over both the 1st and 2nd biopsy, and all the blood tests, and tissue slides and it's still not possible to say anything more definite than there is some 'autoimmune' activity but not very much and difficult to quantify if it is stable or increasing.
Tom asked if either treatment plan would give any protection against the cancer recurring, and I asked if either would give a better life expectancy.
Heppy doc said neither would improve the statistics of a de-novo (new) tumour, and it wasn’t possible to say re the life expectancy.
So I opted for the choice that gives me the better current quality of life, which is option (1) as there will be side effects using immunosuppressants etc long term.
The good news for me is that heppy doc says my cirrhosis is very early stage and that my liver is performing well. O'Blimey the surgeon (who is the only one to have seen the state of my liver first-hand) had been somewhat gloomy and I'd assumed I was worse than it seems I am.
Heppy doc thinks that although I’m chronic inactive hep B I probably have a history of periodic reactivation that went unnoticed due to lack of monitoring. He plans to monitor my bloods monthly and have me back in clinic in 3 months. The idea is to build up a picture of everything that tracks the inflammation and spot immediately any deviation from my current 'normal'. The way things are at the moment my cirrhosis should remain fairly stable, but a flare would accelerate it.
As always when faced with a new path to follow I spend a lot of time mulling it over, consequently I'm a bit tired today. Also I had a long work shift this morning and am out at a book club meeting tonight. So I'm off to pull the duvet over my head for a few hours.
Friday, 6 May 2011
Asked for his advice on the different diagnosis and treatment plans on the table.
The 'do no treatment but watch for and deal with future symptoms and side effects of worsening liver damage' option versus the 'make an educated guess as to the cause and treat the liver inflammation with lifelong medication plus follow up checks to monitor any effect' option.
His advice was add to the mix your age, your current state of health, your personal circumstances and your family situation and ask 'which of these options gives me the best life expectancy'.
Thursday, 5 May 2011
Tuesday, 3 May 2011
Sunday, 1 May 2011
Things improved with a walk to see this lovely bluebell wood.
On return, slammed my finger in the car door - ow ouch! Steri-strips, paracetamol, arnica, ice pack and a cuppa tea (if only all our ills could be cured with a cuppa!) sorted that, but I'm fumbly typing with one hand.
For my finale, spilt a packet of sugar on the kitchen floor. Scrunch, crackle, crunch as we walk on it.
That's my 3 so should be safe now.
Thursday, 21 April 2011
A little early taking the test this time, but I have my 6 month cancer check-up with the surgical team at the beginning of May. What with Easter and then 'Will 'n Kate's' Bank Holiday I'm allowing plenty of time for these results to come back in time for Mr O'Blimey's appointment.
Hope everyone is enjoying the gorgeous sunshine. I have a bottle of 'Liquid Sunshine' in the fridge with a Vitamin D3 supplement in it. Research suggests that many of us in the northern hemisphere (and those in the southern who apply sunscreen) are deficient in Vitamin D.
I've been taking twice the recommended daily allowance for a while now and got my blood test back today. I'm 'normal', but low normal. Looks like I can up my daily intake again to more like x4 the RDA and still be 'normal'.
Anyone out there feeling a bit tired, or achey, for no particular reason, try taking extra Vit D3 and I'm pretty sure you will feel better.
Tuesday, 19 April 2011
Something to do with checking my bone density. The machine is very expensive and is in our private BUPA hospital. A deal is done between the NHS and BUPA to pay for the scan.
After lunch took J for a first appointment to a new homeopath. For his eczema. Which hadn't been too bad for a long time but flared up on his arms and neck when he got taken surprise by sunburn in March. He has 2 pillules and instructions not to use mint toothpaste for a week (mint destroys the delicate balance of the remedy) so it's fennel toothpaste instead - yuk. Also no caffeine.
Sunday, 17 April 2011
Thursday, 14 April 2011
Letter today from Dr Al, the heppy doc at Salford.
Reassuringly long, detailed and thorough.
"It is difficult to judge exactly what is going on"
"I am a bit reluctant to start treatment at this stage"
"I would like to look again at both biopsies from the cancer resection and the histology from February to look for further clues"
"I don't think we have all the information needed to make a decision and would like to discuss further at our next MDT meeting"
Tuesday, 12 April 2011
Sunday, 10 April 2011
Hep B has a definitive set of blood tests and definite look to tissue cells under a microscope.
There's no doubt that I do have hep B viral cells in my liver.
There's also no doubt that I have white blood cells actively bashing something in my liver.
Where the doubt comes in is what are they bashing?
Are they encircling the remaining hep B viral cells to stop them replicating and escaping back into my blood stream.
Or are they bashing an active autoimmune virus.
Unfortunately there is no definitive blood test for autoimmune. Its a collection of jigsaw pieces and an educated guess!
My GP cousin made an educated guess last November.
So did a British Liver Trust hepatologist.
So at the moment its 3-1 in favour of autoimmune.
4-1 if you count my gut feeling and insistence on the second biopsy.
I found some guidelines on the internet published by the American Association for the Study of Liver Disease and I score 14/17 or a 'Probable' diagnosis of autoimmune.
Having concurrent Hep B is very rare and makes it impossible to make 'Definite' diagnosis of autoimmune.
Should I start lifetime treatment, based on a rare probable?
Whether I do or dont, there will always be some white blood cell activity in my liver encircling the remaining Hep B cells, and slowly slowly progressing the cirrhosis.
Saturday, 9 April 2011
Saw Dr S in clinic yesterday.
He disagrees with Dr Al's diagnosis.
Dr S diagnosis is inactive Hep B with active polymyalgia
Dr Al diagnosis is inactive Hep B with active autoimmune hepatitis
Dr S treatment is no treatment for the Hep B and treatment if required for the myalgia
Dr Al treatment is suppress the Hep B while treating the autoimmune.
How do you get two consultants to agree?
Put them in a room with my GP as referee and let them thrash it out til they come to a consensus?
Thursday, 7 April 2011
I'm putting this on my blog for Steve, one of my followers, who is just over half way through his post surgery chemo for rectal cancer. Now that it's April May won't seem so far away.
Steve this is to cheer you up as I know you like photos of lil ol' England!
T took the photo whilst supervising a group of Undergrads who are there learning practical, in the field, surveying. He's gone back again today, and goes a 3rd time next week. There are so many students they have to do it in shifts
Monday, 4 April 2011
In December I saw Dr S in clinic, and voiced concern over my continuing fatigue, aches, pains and occasional feverishness. I’d made notes about autoimmune and highlighted some of my blood tests. On my blog of 7th Dec I wrote "We went through my Hepatitis blood tests and he looked at the notes I’d made about autoimmune. He still feels that Hep B is the most likely cause of all the problems, including the persistent inflammation".
He ordered a second biopsy, the one I had in February. This was discussed at the medical team meeting on 9th March. I scrounged the report from the GP last Friday and it was the reason for today’s appointment with Dr Al, the new hepatologist at Salford.
He read the reports and underlined bits, so I asked him what he was underlining. He said my history, including the speedy response to steroids plus the biopsy evidence of inflammation in the liver is suggestive of autoimmune hepatitis, and that was why I was there.
That left me speechless! I’d put autoimmune to the back of my mind and had been told by O’Blimey’s secretary that the referral was for cirrhosis.
Dr Al took another bucket load of blood tests – just to be doubly, trebly sure. I’ve had about 8 vials taken today, as I’d been to the GP in the morning to have Vit D and iron levels checked. Sore arms – argh!
It’s back to see him in a month to get the results and confirm treatment.
Co-infection with autoimmune and viral hepatitis is tricky. Standard treatment for autoimmune is immunosuppressants – just the ticket for bringing those pesky little hep B cells trapped in my liver back to life . Dr Al’s method is to give me an anti-viral to keep the hep B down, at the same time giving me immunosuppressants to treat the autoimmune. For life – b**ger.
The good news is, yes there is good news, that Dr Al doesn’t think the liver damage is too bad and that treating the autoimmune will stop its progress. It’s the Hep B, he thinks, that triggered the cancer.
Sunday, 3 April 2011
First; what they didn't find. The biopsy ruled out 9 different things. Did that mean 9 tests on this sliver?
It ruled out 'mass cell death' - that's got to be good!
It ruled out in 3 different ways evidence of pre-malignancy or abnormal cells suggestive of HCC cancer.
It ruled out iron overload (common in liver disease)
It ruled out Wilson's disease and primary biliary cirrhosis, 2 other forms of liver disease
It ruled out choleastis which is a blockage of the bile ducts
Second; what it did find.
It found evidence of cirrhosis - no surprises there - and categorised it as 'moderate' disease progression, in most but not all sections.
It went on to stage the cirrhosis by 4 different scores for inflammation.
I won't categorise the types of inflammation as they are gobbledygook, but think of it as 4 exam papers where the marks total 18, but you want a low not high score. I score 2/4; 0/6; 2/4 and 3/4 which totalled 7/18.
My guess is that when you reach 18/18 your liver is a gonner.
It found evidence of bile duct destruction (you need bile to digest food) which is reflected in my 3 out of 4 score, above.
It found evidence that the liver was having trouble digesting fats.
The above 2 findings re-inforce my belief in a healthy, low fat, easy to digest diet.
It found 'patchy positive' evidence of hepatitis surface antigen HBsAg - this is the marker that says 'this person has or had hepatitis B'.
What will be significant, is if the tissue tells whether the hepatitis is ACTIVE or INACTIVE. I've not fully understood this.
The good news is:- there is no evidence of a cell called a 'ground glass' cell (because of the way it looks). The presence of ground glass cells says WARNING: acute infection.
There is 'occasional' or 'patchy' evidence of various white blood cells. White blood cells are part of our immune system, and get busy when there are bugs invading us. Finding white blood cells in my liver might mean they are the remnants of Dads Army (see post 'War is Over') still knocking out any stragglers of hep B. Or it might mean they are attacking a new uprising. I dont know and it's on my list of questions for the hepatologist on Monday.
The good news (I think) is there is no evidence of something called 'granuloma' which is when the immune system encircles its enemy. Think John Wayne and a wagon train being encircled by indians.
Summary: Question to ask hepatologist - is the evidence of hep B in my liver cells suggestive of active or inactive hepatitis.
If the answer is inactive, good, I guess we continue to monitor.
If the answer is active, the next question will be 'what are we going to do about it before it makes the cirrhosis worse'.
Now that the February liver biopsy report (more on this in another post) has been looked at by the MultiDisciplinaryTeam responsible for my care, the decision has been made to refer me to a hepatologist - AT LAST.
A new clinic has opened at Salford Royal hospital, which is about 20 miles away.
It's led by a hepatologist transferred from the Freeman Hospital in Newcastle, a specialist liver transplant unit.
I'm hopeful he brings with him expert knowledge and it's a joint post with North Manchester hospital where my surgical team and the MDT team are based.
The appointment came as a shock. The MDT met and made this referral on March 9th, but forgot to tell me. Hey ho, why should I presume I matter!
A Salford hospital appointment lady rang out of the blue on Friday 1st April to check I was available on Monday 4th. April Fool of course.
Me: 'appointment, what appointment? You must have the wrong patient'
Her: 'Can I check your date of birth, yes that's correct'
Me: 'appointment, what for?'
Me: Panic - do I have to go to Salford for the second attempt at the endoscopy? Oh no, I don't want to do that.
Me: 'Who made the appointment?'
Her: 'Mr O'Blimey'
The fog starts to clear and I call his secretary, who explains. Phew.
I still don't have the Biopsy report, or the CT report, and would very much like to be up-to-date with myself (!) before I see this new guy. Hence my rush to the GP and the secretaries, yet again, coming up trumps by printing everything off for me, including a copy of the referral letter I never got.
These ladies are due some Easter egg treats.
Friday, 1 April 2011
"There is no evidence of hepatocellular carcinoma" - Hurray
"Lung bases clear" - Hurray hurray
"No evidence of renal obstruction. Bone review negative" - Hurray hurray hurray
PS I also got the biopsy report, but that is 7 paragraphs of scientific and medical jargon which will take me all weekend to translate. However, the last line says "appearance is not considered diagnostic of autoimmune hepatitis" - cautious hurray.
Thursday, 31 March 2011
Monday, 28 March 2011
I've put on a couple of lbs weight while trying to stick to mainly 'mediterranean' foods. I've only managed one walk and had a few very tired days when I've had to go to bed for a few hours. I've worked more and done extra driving, so that might be causing the fatigue.
Monday I did 2 shifts back to back, covering for a colleague with a medical appointment. The second shift was with a favourite client, a 97 year old lady who I worked with before for 18 months but then 'lost' while off sick. It was lovely to be with her again and a neighbour made a point of stopping to congratulate me on making it back, which was nice.
Wednesday and Thursday I did routine shifts. My Thursday client insists we sit and chat over a cuppa and a cake, usually a cream cake. As she is blind I can serve myself a tiny morsel without her noticing, as cream or high fat cakes are off my menu.
J had a mock English AS level exam.
The Spring sunshine has prompted me into housework and window cleaning away the winter filth, though T has done the first weeding, lawn mowing and vegetable plot digging of the season.
Sister-in-law came over from Yorkshire for the day on Friday, which was lovely. She and I had a pub lunch but I excused myself from the 6 mile walk that followed with T.
J came home early from 6th form with a nasty flare up of eczema, so whizzed him down to the doctors for the end of Friday surgery. A course of antibiotics and some fresh steroid cream is beginning to calm things down. He's now £98 poorer, having bought a ticket for Leeds Festival, and is looking for a job!
Saturday was our 29th wedding anniversary.
Saturday and Sunday I worked shifts. A new client, currently struggling with sudden hearing loss. It takes 10-15 minutes to get into the house, as he can't hear the door or the phone. The neighbours must think me mad, knocking on the window and flapping my arms to attract his attention! I do have key access, but I think I would terrify him suddenly appearing in the room. It's slow work communicating by writing everything down or using signs.
British Summer time and clock changes confuse the older clients and I have to work out fast how to change their digital clocks, heating systems, microwaves and anthing else with an electronic timer!
Oh, and the water went off again today so I looked back through the blog and it last went off 7th November.
Wednesday, 23 March 2011
Physically it's slightly easier than before, as my employer has been careful to assign me jobs that don't need manual handling or heavyweight household tasks. Emotionally I'm finding it harder than before because of the nature of the clients health. Alongside age related dementia (which I dont find a problem) I've ironically been allocated cancer patients so this time round it's more personal!
Tuesday, 22 March 2011
"Tonight all, I'm going to be 'reviewing Burnt Shadows by Kamila Shamsie."
Our monthly Book Club meeting is at my house this evening. Better tidy up. There's enough food debris under the sofa seat cushions for an army of mice and what I find on the floor under the sofa itself is indescribable. OMG there are dust cobwebs drifting across the ceiling. 2 of the ladies have dust allergies and it's embarassing if it's your house that makes them sneeze! Anyone else bought these magic cleaning e-cloths that claim 'perfect cleaning with just water'. Why use magic e-cloth? It will save you time, money (at £5 a cloth??) and give better results with a sparkling smear free finish. I'm taken in by this vision of sparkling smear free windows letting in the sparkling Spring sun. They forget to add that you still need someone with elbow grease. Better wait for my servants to get home from school/work.
The book we've all read moves from Nagasaki 1945 to Delhi and Indian independence and partition, to Karachi, to Pakistani-Afghan training camps and thence to New York after the 9/11 attacks ending with a scene at Guantánamo Bay. With the current affairs in Japan no doubt tonight will include some debate about the nuclear industry.
Next month's book is "The Anatomy of Ghosts" by Andrew Taylor.
PS. 9 out of the 10 book club ladies came, an excellent turnout. Lynette I hope your husband has forgiven you for forgetting it was his birthday the same day! Oh, and nobody sneezed.
Sunday, 20 March 2011
He's 5ft 10" and was down to 8 stone 7lbs after half-term. This was caused by lying in bed until lunchtime, thereby missing breakfast, and then lying on the sofa for most of the day in a teenage-sort-of-way instead of getting meals from the kitchen. Since then he has been force feeding himself currys and pizzas and fruit crumbles and donuts and all sorts of pretty unhealthy stuff (no fruit crumble does NOT count as one of your 5-a-day, nor do the tomatoes on a pizza). After 3 weeks of such hardship (not) he is now 9st.
I'm 5ft 6" and 8st 12lbs. I can eat vegetable currys and tiny bits of pizza but fruit crumbles and donuts are a no no. I cant see pictures of them in my Mediterranean pyramid. After 3 weeks of grains and fruit and veg and rye bread I've put on 1/2 lb - yay!
Tuesday, 15 March 2011
Left to myself I researched a bit, and asked around a bit. The majority of cirrhotic patients on the hepatitis forums are in the same boat. No advice and making it up as they go along. The consensus seems to be: frequent small meals and snacks instead of 2 or 3 large meals. Plenty of low GI carbohydrates, plenty of fruit and veg, protein mainly from non red meat sources, low salt, not too much saturated fat. Pretty much fits the Mediterranean way of eating.
Anybody with tasty recipes that dont need more than 5 or 6 ingredients, have protein from mainly non animal sources and around 20 mins preparation/cooking time, please send. I get peckish but quickly bored in the kitchen!
By coincidence I've been asked to help on a second British Liver Trust leaflet. This time their 'diet and liver disease' one.
On the health front:
The biopsy results are back but have been passed on to a hepatologist for a second opinion. I've been told verbally that they confirm chronic Hepatitis B and established cirrhosis. Nothing we didnt know already. The second opinion is to look for evidence of active hepatitis.
The CT scan was 2 weeks ago, but not heard anything on that. Probably give it another week before I ring to check.
The gastroscopy I have to wait for a new appointment through the post.
My GP is writing to the consultant to get his opinion on the use of steroids should I have a myalgia flare. He's also telling him about my anxiety over the gastroscopy to see if they will consider a general anaesthetic.
He's ordered another complete set of blood tests (to be done on March 29th) including iron (with liver disease you can store too much) and Vitamin D3 which I'm currently taking as a supplement.
Wednesday, 9 March 2011
NB: Carole:- This comes nowhere near the if-you-don't-laugh-you'd-cry level of your "Hello...where is the wound on your finger?" nurse. For those not in the know this will explain http://caroleandcancer.blogspot.com/2011/02/just-quick-rant.html
For yesterdays (non)procedure I'd been sent a pre-appointment questionnaire covering current state of health, medical history (am I likely to have a heart attack or go into a diabetic coma), allergies, current medications, etc. You give this to the clerking-in nurse, and then she takes out her own sheet and asks you the same questions all over again (Why?) She asks if I understand what procedure I'm in for. I say yes, I've got cirrhosis of the liver and it's to check for possible esophageal varices. She looks at me quizzically and says 'you don't look like a drinker'. Then points at a Sharps bin (Carole knows about these too) and says 'most of our cirrhosis patients look more that colour'
I should have taken in that British Liver Trust leaflet. The one that lists the 19 different liver diseases, of which alcoholic liver disease is but 1/19th of the sum. The one that explains people at risk of cirrhosis are not just those who drink but those who have any long-term liver infection; those who have an inherited liver disease, such as haemochromatosis; those who have an immune system problem that leads to liver disease and those with a fatty liver.
PS. Despite the procedure failing, I can't fault the professional, patient and sympathetic treatment by the specialist nurse and her assistants.
Today Dr S rang me to say I would be booked in for a second attempt and this time he would do it. Also he has the results of the biopsy but has asked for yet another opinion from a hepatologist.
Tuesday, 8 March 2011
I've never been good at the dentist probing the back of my mouth. I was also unable to tolerate the naso-gastric (or NG) tube after my liver resection surgery.
So I was pessimistic about the success of this procedure, which involves a tube the thickness of a biro down your throat and into your stomach. I had a long chat with the endoscopy nurse.
We decided to go for it on the understanding that she would stop if it became clear I was distressed. Into my veins went a nice big dose of midazolam sedative and I drifted off to sleep. The last I remember of a normally 5-10 minute procedure was the teeth-guard about to go in.
45 mins later I wake up back on the ward to find they had been totally unable to intubate me. Despite being completely out of it on the drugs I had reacted in some way that they got no further than my mouth, let alone my throat or oesophagus. Hope I didn't swear or hit anyone! I don't know, because the amnesiac effect of the drug means I have no recollection at all.
My notes now say 'Mrs S was unable to tolerate the procedure. For discussion at HpB MDT meeting tomorrow with scan and biopsy results'. So, I don't know where we go from here. It's possible another scan instead of the endoscopy. I should get a call Wednesday afternoon.
Friday, 4 March 2011
T & I used to go to festivals, not music festivals but orienteering festivals. In 1983 our then 'club' was responsible for the car parking of an annual international event called the JK or Jan Kjellstrom http://www.jk2010.co.uk. Around 4,000 runners attend this most years. Here is a little yellow VW at the start of the day.
As a student I also use to drive one of these (below)for the university team. BUSF stands for British Universities Sports Federation. They had an annual event too.
That's me! And T peeking out of the back.
After last weeks 'fasting' day for the biopsy, and this week's 'fasting' morning for the CT I've lost 2 lbs in weight. I'll have to pig out over the next few days to regain the lost lbs as I have another 'fasting' day next week when it's Nil by Mouth on Tuesday.
1 1/2 hour walk with K and Basil-the-dog
Thursday, 3 March 2011
Everything goes ok apart from (1) first radiographer can't get IV in so second radiographer tries on my other arm. Pincushion time. And (2) for a few minutes after the IV hits the back of my throat my mouth, tongue and throat go fuzzy and tingly which is disconcerting as a classic sign of early allergic reaction. Once the IV stops flowing it eases a little, and with plenty of fluids after I feel ok again. Last time I had an upset tum, this time tingles. Hope I'm not building up an allergy to the stuff as this is on repeat twice yearly for the indefinite future. 2 weeks for the results.
Tuesday, 1 March 2011
Once on the site you can click on 'Download Liver Cancer LCZ 0311.pdf' to view.
It's even in one of my favourite colours!
They've kindly sent me multiple copies and some other leaflets to take to my GP surgery.
Cleaned out woodburner.
Spent some time squished behind the TV cabinet sorting out a tangle of plugs and cables. TV plug, aerial cable, freeview box plug, DVD plug, CD plug, ipod docking plug, Xbox plug. Abdomen a bit sore for a while later, but not too bad and no stiffness
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!