Update and Happy Christmas

Had my latest 6-monthly liver cancer surveillance MRI on December 11th.  It partly seemed better than usual, as I couldnt 'taste' the dye at the back of my throat which tends to raise the anxiety level.  It partly seemed not so good as I was in the scanner for an hour which is much longer than usual.  A number of times we seemed to repeat parts of the process while they told me through the microphone that they were 'comparing' scans.
The MRI report is to be discussed at Mr O'Blimey's clinic on December 27th.  However to date it hasnt been written up by the radiographer at Macclesfield where it was done.  No point driving to North Manchester if there is no report to discuss (also they have been hit by the Norovirus like much of the UK, and I dont want that!)  Trying to postpone the appointment but not getting any response from the clinic secretaries as I write this.
Blood tests have been coming back ok.  Tumour marker is currently <1 which in my book means Zero.
Stamina or at least recovery rate after exertion has improved.  I've been coping with 11 hour shifts 2 days a week and 6 hour shifts at the weekend (OK I do get short breaks, but not much).  I make sure I go to bed very early.  My first shift is generally 7am which means getting up around 6am.  I get 3 days a week off (except when there is an on-call job that needs doing) which works much better than where I worked before as I can get home things sorted in advance for the work days and have full days at home to do whatever I want.  J is still at home on his year out, doing all his cooking for breakfast and lunch and helping out on my work days by organising our evening meal if Dad isnt at home.
I'm working Christmas morning and until late afternoon Boxing Day.  Then I get 2 days off - yipee!

Happy Christmas to everyone.

New job

After 3 years at my last job I've decided it was time to move on.
The lovely Human Resources lady who saw me through my sickness absence, and coaxed me gently back into work, has left.  Also the lovely scheduler who understood when I declined too many shifts/ evening work, has left.  None of the present office staff know me, and any form of training or development seems to have dried up.  So despite missing my lovely clients, I've moved away from a privately owned business to a corporate one. 

Pictured above is one of the 'Belong' homes.  They offer elderly care via a mix of 'household' living with 24/7 specialist care, 'apartment' living in self-contained flats joined to the supporting home, and 'home' living which is what I have been doing before - homecare for the elderly out in the wider community.

I'm going to be working with a small team of 10 (there were around 40 where I was before) looking after people in the apartments and in their own homes.

I've had a week of induction training and on Tuesday I start a week of 'shadowing' the senior care team round the mix of clients, before being launched on my own! 

Ultrasound

Ultrasound today.  The only u/s I've had, ordered by Dr S my gastro.  Not sure why.  Neither was the radiographer, who noted it had been requested as part of my HCC surveillance and, like me, was of the view that 6-monthly MRI scans will be monitoring me far better.

Anyway she reassured me that I had no ascites (tick), my liver is a bit lumpy and bumpy not smooth and shiny (tick), my spleen is fine (tick), and the blood flow through the portal vein is normal (tick).  She also reassured me that ultrasounds are very quick and therefore relatively cheap for the NHS and not to feel extravagant about unnecessary procedures!

Still undetectable while on reduced dose

Had my most recent viral load (VL) through the post today. Still showing my 'undies' at  <15 iu/ml, which classifies as negative.  So that's great news, as I've been on a reduced dose of the Tenofovir for 2 months.

Hopefully I can plod along with a 68% kidney eFGR.

I do have a slight problems with what the hepatologist calls lymphadenopathy. I have uncomfortable areas around lymph glands/nodes in the bit of your neck they call 'submandibula';  the 'posterior' - which is from your skull base down behind your ear, (both on the right side) and around the left armpit down my upper arm. Hepatologist assures me the Tenofovir doesnt affect the lymphatic system, so not sure what's causing this. Maybe a good time to get another FBC (full blood count) run to see what my immune system is doing.

Great North Run

Somewhere among nearly 50,000 runners is my brother, who completed the 13.1 miles in under 3 hours

Well done! And congrats for fundraising for your local hospice.

Not much to report from myself.  A couple of appointment c*ck-ups but that's nothing new.  Pharmacy at Salford could only supply 2 instead of 3 months Tenofovir, so had to re-arrange 3-monthly follow-up clinic to become a 2-monthly one.  The missing meds arrived a couple of days after my September clinic, but I chose not to drive the 3 hour round trip twice in one week for the sake of 1 bottle of tablets.  I'll get another 3 bottles in November instead.

Letter arrived booking me into an ultrasound at Macclesfield next month.  In spite of a letter from my surgeon to Macclesfield asking for an MRI, the same old same old as 6 months ago has happened again, where they try to downgrade the imaging to a US instead.  Waiting to get that changed.

Paralympics comes to Bollington

When J was at primary school, around age 7 or 8 I think, he had a friend called James who lived a few doors away. Here they are peeking through the glass of our back door.

Here is James yesterday, 2nd September (far right) at the Paralympics

James older sister Libby (22) is also a Paralympic athlete. Last night she broke the European record to win silver in the 100 metre T-12 to add to the silver medal she won in Beijing. For James (18) this is his first Paralympics.  He competes later in the week in both the 50m freestyle and 100m freestyle while Libby competes again in the 200 metre. Both have a congenital condition that causes their eyesight to deteriorate.

Toothache

While the Tenofovir was busy messing with my kidneys seems it was also tinkering with my immune system response.  Dentist has diagnosed an abscess under a crown I had fitted 6 months ago and which had been causing lots of pain since last week.  She reckoned that it had flared to coincide with the dip in kidney function, something they often see is a dental problem if the patient is a bit below par.

So today I have the abscess drained and packed and then Thursday a root canal filling, and then fingers crossed no more pain.

I hate the dentist, not personally(!) but I hate being treated at the dentist.

Improvment

Got my latest kidney function result back today.  Improving again, back up to 73% and the creatine is reducing nicely.

It may be because I cut about 1/3 of the pill off before taking each day, reducing the dose.
It may be because I checked my water intake to make sure I wasnt dehydrated (I seem to manage about 1 3/4 litres a day which should be ok)
It may be because I'm drinking nettle tea, lol!
Whatever, I shall continue with the reduced dose of Tenofovir (which isnt protocol until you go down to an efGR of 50 - tut tut) and will risk a telling off by my hepatologist in September.  Decided I wasnt waiting til September and a crashing kidney function before any action was taken.

Cancer free - but at what cost?

33 years after being diagnosed with Hep B I started treatment in April this year with a drug called Tenofovir, designed to suppress the reproduction of the virus as long as I take it for life.

For the first time since surgery for HCC cancer in 2010, my alpha fetoprotein (AFP) tumour marker has come back <1 - which in my books is zero, so undetectable.

Good news.

But before I hang out the bunting, I've only been taking Tenofovir for 15 weeks and already its reduced my kidney function to a flow rate of 68%.

Not so good news, as I have to take this drug for life if my viral load is to stay undetectable and my risk of HCC recurrance reduced.

I've reduced the dosage, and will have another blood test in a few days to see if that has helped stabilise the somewhat dramatic fall in eFGR.

Nothing is straightforward with HBV! Tricky little b**ger!

Kidneys - how they work

As mentioned in my 29th March 2012 post, the possible downside of treatment with Tenofovir is the drug side effects. Significant long term ones are kidney damage and osteoporosis.

Since starting the drug, I've been tested every 3 months to see how my kidneys and bones are coping. My last 3 tests have shown the flow rate through my kidneys - the eFGR - dropping from 90% to now 68%. Laboratories use a blood serum test - creatinine - plus your age and sex to calculate the eFGR. My creatinine level has been rising in parallel with the eFGR falling. Creatinine is filtered out of the blood by the kidneys, so measuring levels is a good way to find out how well the kidneys are doing their job of filtering. If creatinine levels rise (as mine are) the filtering job of the kidneys is deficient.

I looked back at previous tests (it pays to keep copies of your blood test results for a long time), and T did a clever little spreadsheet which produced a colourful graph, showing clearly that from the time I started on Tenofovir the levels have changed quite quickly - in the wrong direction. We want the red line to go back up to around 90, and the blue line to drop back to around 60.
 

Spoke to Dr L yesterday, and he suggested reducing the dose of the Tenofovir. Normal protocol is not to reduce the dose until the patient's eFGR drops to <50 - but heck, why wait until your kidneys are at 50% efficiency? Makes no sense. What I'm doing is trying to stop the damage progressing any further than it has already! He also arranged to give me another eFGR blood test next week and then a further one at the standard 1 month date agreed with Heppy Doc.

A friend on the liver support forum recommended nettle tea as its good for your kidneys. Nettles are also packed with Vitamin K (something us with poorly livers get low on, it clots your blood), calcium, copper, iron, magnesium, manganese, phosphorus, potassium, selenium, sulfur and zinc, as well as loadsa B vitamins. With a slice of lemon, a sprinkle of sugar, and while holding my nose to avoid the taste (it tastes like I imagine eating grass or hay would taste) its just about palatable!

All done and dusted for 6 months

Within the space of 10 days have had my 3 month hepatology check-up (just waiting for current viral load result), my 6-month cancer check up (all clear for now, counting the days to 2 years post and then I will be over another hurdle), and an unexpected gastroenterology outpatients (havent seen him for about a year) where he gave me some paperwork for an AFP in 6 months and agreement to book another MRI in 6 months.

Despite our very un-summery weather, our strawberry plants have produced a bumper crop.  3kg picked in one day yesterday, in the rain!  So today is strawberry jam making day - yum

Also sending love and best wishes to my sister-in-law K, who was rushed into ICU a few days ago with pneumonia, but who has make a remarkable recovery and is on the mend.                                 

Am I serious?

To my earlier post on the source of the infection, anonymous asks "Are you serious?".  

Well yes.  Apart from having no idea how you check a mosquito to see if it is Hep B positive!  But if we can identify malaria in mosquitoes, I guess we have the technology.
Do a general 'google' search and you will find lots of articles with valid reasons why its not possible to spread via mosquitoes - to do with saliva not being a transmission route, the likely survival time of the virus in the mosquito, etc. 
But if Hepatitis B viral DNA can be detected in bed bugs up to six weeks after they feed on infectious blood, it makes you wonder, doesnt it?
Here's some research that was published in 1973 on HBV in mosquitoes:

Mosquitoes were fed on or inoculated with blood or serum positive for hepatitis-B antigen (HBAg) or allowed to feed on the arm of an HBAg carrier. Pools of mosquitoes were tested by radioimmunoassay at intervals up to 45 days after exposure to HBAg. HBAg was detected long after the blood itself would have been digested. The findings suggest persistence (but not necessarily replication) of HBAg in mosquitoes.

The Lancet, Volume 302, Issue 7832, Pages 758 - 760, 6 October 1973

I've had 30 years to go over and over the different possibilites for how I was infected.

Here are the most common transmission routes:

Mother to baby:  Possible, but unlikely.  If my mother had Hep B (she too spent time in Kenya, but in the 1950s) I will never know, as she died in 1981.  If I had been infected by maternal transmission, then my brother most likely would have.  And he hasnt (as far as I know, sorry bro!)

Intravenous drug use:  I'm always asked about this.  Its a 'no'.

Unprotected sex with a Hep B+ partner: Again, no

Sharing razor/toothbrush with a Hep B+ partner.  No

Blood transfusion before screening was introduced in the UK:  No

Dental work in a country where equipment isnt sterilised:  No (unless my white middle class dentist in the UK in the 60's is a possible)

Tattoo: No

Piercings: Possible, if a white middle class hairdressing salon in the UK with piercing gun was high risk.

Where have I been where Hep B is much more prevalent than white middle class England.  

Kenya.

How many of the Kenyan population there are infected with Hep B: Hundreds of thousands.
And with my genotype?: 88%

Are travellers recommended to get the Hep B vaccination before travelling there: Yes.
Why? Are they all going to share needles with Kenyan drug users and have unprotected sex? I think not, so there must be other transmission routes that put travellers at risk.

Did I have a Hep B vaccination before travelling?:  No, it wasnt available in the early 1970s.

How many of the population there are bitten by mosquitoes:  Hundreds of thousands.

When a mosquito bites a human, it injects saliva and anti-coagulants. Could these carry Hep B?  Seems possible to me.

Anonymous said "I had no idea that mosquitos could spread hepatitis so easily".  Whoa, steady on.  If you 'google' the question, the answer will come back either its not possible or its not documented in medical literature that Hep B is transmitted that way.  But how many other viruses and infections apart from malaria do mosquitoes transmit?: Yellow fever, dengue fever, encephalitis, polyarthritis, Rift Valley fever, Ross River fever, West Nile virus.  So why not viral hepatitis, seems possible to me.  Hep B is highly infectious, 100x more infectious than HIV.  Doesnt take a lot of blood to transmit it.

Anonymous said "That is an extremely scary thought... since it is next to impossible to entirely avoid exposure to mosquitos"  But you can protect yourself 100% by choosing to have the Hep B vaccination.  Have it done now and you banish scary thoughts!

"I hope they automatically screen for hepatitis whenever they draw blood"  In the UK, the Blood Transfusion service have screened blood donors for many years now, for hepatitis, HIV etc.  That's how I was diagnosed - it was picked up when my donor blood was screened.

What they dont do is screen your blood when the doctor does a blood draw for a health reason.  Say, for example, you were having a blood draw for your thyroid, or diabetes, no they would not routinely screen that blood for hepatitis.  It would be an invasion of your privacy to do that, unless you specifically asked or gave permission.  The only time they DO routinely screen for Hep B (and HIV) is when you are pregnant.

Source of my infection

I had a check-up with heppy doc yesterday.
Amongst other tests taken 3 months ago was a test to 'genotype' my Hepatitis B infection. 
Hepatitis B has 8 subgroups which are prevalent in different parts of the world.  Diagnose your 'type' and you may be able to work out where you where infected, or by who.
I found out yesterday that mine is Genotype A
88% of Hep B positive people in Kenya are Genotype A.
I think that's my answer.
It seems unlikely now that a piercing parlour or a dentist in white middle class South West England in the 70's would have been my source of infection with an East African genotype.
It seems more likely now that something like a mosquito bite during a trip to Kenya in the mid '70's is the source.  I do remember feeling a bit rough for a couple of days, but was never jaundiced or really unwell.

Be a cancer mentor

If anybody reading this would like to be a mentor to someone else with HCC, please check this link out:
www.imermanangels.org
It's a US based organisation, but encourages people to link up worldwide, if not by phone, then by email or Skype

New place for support and information

For those who use Facebook there is a new site called Hepatocellular Carcinoma Companions at  http://www.facebook.com/groups/myhcc/358424547543935/

Primarily for those with HCC or those caring for someone with HCC, the founders of this site are also members of another group on Facebook for Fibrolamellar liver cancer.

The group hopes to develop a community for HCC fighters/survivors.  The more we engage with each other the greater the impact the group can have.

Timeline

Another letter arrives, this time from North Manchester hospital, telling me the MRI result.  I now have a better picture of the timeline from when the scan was done until the results have been agreed on by all interested parties. 
Scan: 20th April
Scan checked & report made: 24th April
Report checked and letter written to me: 4th May

(so that part went swimmingly.  Unfortunately where it then went awry is that the letter with results went to my GP who filed it away without comment.  Copies should have come to me, and presumably to North Manchester and the surgeon which would trigger a discussion at the next weekly MDT meeting.... but they didnt)

14th May: I start the search to find who has the results of the MRI
15th May: MRI report faxed from Macclesfield to North Manchester at my request
18th May:  I track down the 4th May letter at the GP - 14 days after I should have received it.
21st May:  I get a copy of the original MRI report that has been doing the rounds since 24th April.
30th May: North Manchester include me in a weekly Wednesday MDT meeting, and the surgeon gets the chance to look by video link at the scans.
30th May: letter from surgeon typed to me with results of that MDT meeting (so it took 40 days from the date of the scan for the surgeon to see a copy via video link)
8th June: letter arrives with me.
28th: I will get to discuss this with O'Blimey the surgeon
29th June: I will get to discuss this with Dr S, who had the results back in April!

My next 6 month scan will be due end of October.  Now I know to allow about 6 weeks from start to finish of the process, which in reality could be done in about 2 weeks. 

MRI gets the thumbs up

Random letter arrives from Dr S, the gastroenterologist, advising that I will continue to be monitored 6-monthly with AFP tumour marker and MRI.  This was approved at the MDT meeting, which most likely means that O'Blimey the surgeon had the casting vote on continuing with MRI scans and not demoting me to ultrasounds.  Good news

Two down one to go

Item 1) The letter from Dr S that was written on 4th May arrived in the post.  I'd already picked up a copy from the GP, as they'd had it for two weeks!  It's very brief, summarising the MRI report as 'no new lesions'.  Interestingly Dr S the GI informs me I will be monitored by 6 monthly AFP tumour marker tests - which I am, but not by him; he hasnt been involved in my care now for a year. 

Item 2) Photocopy of the clinical report written on 24th April, summarising the MRI itself.  Written by a Dr T, diagnostic hepatobilliary radiographer with a speciality in GI tract oncology.  Wow, that sounds impressive.


Dr T used as a comparison the scan taken in August 2010, when the HCC tumour was in situ.  I've had 3 CTscans since then but he didnt seem to look at those, even though 'surveillance' is meant to be a check every 6 months.  
From what I can translate from the 'medspeak', the area round the resected tumour is fine, with nothing showing as abnormal.  I'm not entirely sure if that applies to the rest of the liver, but have to assume it does.
He seems to have looked mainly at the liver around the site of the resection, noting that most of the segment where the tumour was found, remains.  So it sounds like hardly any liver had to be removed during surgery, and what has regrown around the tumour site is healthy.

The conclusion states: 'effective resection of segment 3 HCC'.  So I'm not entirely sure if it's a report on the overall health of the entire liver, or just the state of the resected area 2 years after surgery.
Something to ask when I see the surgeon in June.

Just waiting for item number 3).  A new appointment with heppydoc in time for refills of Tenofovir.  I've written a letter, sent an email, and rung twice, but so far no response.
Edit: new appointment now made.  Guess what, its the same date and time of the appointment cancelled by the book-in clerk back in March - June 25th!

One letter

Still no letters in the post, so I rang the GP and yes, Dr S did write a letter to me on 4th May with the results of my MRI.  It was sent to the GP, and has ben sitting on their files for 2 weeks. 

Hey ho.  The secretaries at the GP will take me a copy which I can pick up this afternoon.

I wonder who, if anybody, received my 'confidential' letter in the post!  (I doubt it was ever sent)

Still waiting for the copy of the actual MRI report.  And a new heppydoc appointment.

FFS (Text speak for ***)

Got back from work.  Nice email from surgeon's secretary assuring me the faxed MRI report has arrived and she's put a copy in the mail to me.  Hurrah.

Knock at the door and postie delivers a letter with hospital stamp on it.  Wow, that's quick, I think.  I bet that's the mysterious "4th of May" letter with a 14th of May postmark.

Nope.  It's a letter from Heppy Doc's hospital.  From their outpatient appointments people. Cancelling my 18th June appointment and re-scheduling to August.

FFS.  I run out of Tenofovir tablets on 18th June and Dr Al stressed it is imperative I see him and collect another 3 months supply on that date.  I cant stop taking the meds for 7 weeks FFS.  I have to take them every day without fail or there is no point in the treatment.

More stress, more grumpiness, Grrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrr

Asterisk, bleep, exclamation mark

So.... the Macmillan Nurse didnt call.
I rang the MRI department at Macclesfield, and they said the report went to Dr S on 24th April.  Thats 3 weeks ago and I'm still bl**dy waiting.  No news is NOT good news in this sort of scenario when nobody seems to know if anybody has even looked at the damn report, let alone looked at the images.
So I emailed his secretary and she said Dr S had written to me on 4th May.
Which he may have done, but the letter hasnt plopped through my letterbox.
What did plop through my letterbox on 4th May was an outpatients appointment to see him on 29th June  Well that's no eff**g good is it, ha ha.  That's two bl**dy months after the bl**dy scan.  If I had cancer but nobody knew as they hadnt looked at the images, I might be dead by June, ha ha.
(You can tell I'm cross).  And I'm already seeing the surgeon the day before, so what's the bl**dy point?

I emailed her back and said 'is it a personal letter?, cos all I got was an outpatients appointment'
Yes, she assures me today, its on its way.  Ok, I know the post is poor, but 2nd class post doesnt take 10 e**ing days. The Olympic torch bearer could get it to me faster.  I bet she's run off another copy and popped it in the post today.

She also told me she would fax the MRI report to O'Blimey the surgeon's secretary.
The one who passed the buck to the Macmillan Nurse to 'go fetch'
I've emailed the surgeon's secretary and asked her to photocopy the fax and send me the copy right back, oh yes, ... even email a copy if she's allowed.  Somehow I think not.  It's apparently safe for a letter to go in the post and take 10 or more bl**dy days to go astray.  But it's not apparently safe for an email copy of same to ping into your inbox within seconds. 

Fingers crossed I will get my own copy of this report that so far, nobody is owning up to either reading or having, and then I can see for myself if I do or do not have cancer, instead of having to wait another 6 weeks for someone, anyone, to tell me in person.  Jeez.

Exclamation mark !  Exclamation mark!

Rant over, feel better now.  Deep breath .... exhale.. ahhhh, sigh.  Smile.

How long does it take

Still waiting for someone, anyone, to tell me the results of my MRI scan done on 20th April.

Surgeon's secretary tells me the 'usual protocol' is the images from the MRI scan at Macclesfield would have been sent through to their MDT coordinator and discussed in their weekly Wednesday morning x-ray meeting.
Wednesday 25th April came and went, and nobody got in touch with me.
Two more Wednesdays came and went, and then I got in touch with her..... no reply.
A 4th Wednesday passed and I asked again.

Apparently my Macmillan Nurse has been designated the 'seeker' and will give me a call.

Waiting ... waiting ... waiting...

Side effects

Being a natural pessimist, and overly cautious, I spent a lot of time reading the side effects bits on the Tenofovir patient leaflet.

Common ones include headache, diarrhoea, feeling sick (none of these so far); and feeling tired.  (Oh and I just read the leaflet again and it says 'flatulence' - OMG better look for a windbreak).  For an illness where a major problem is feeling tired, its a bit of a bummer to have a treatment that makes you feel tired!

I've been on the meds nearly 4 weeks, and yes, they make me feel tired.  I started by taking my tablet at lunchtime.  With food, in the hope it would be kinder on the stomach.  With a glass of milk.  Within a few days I was overwhelmed by fatigue by 9pm each day.  Had to either go to bed, or lie on the sofa with one eye closed and the other half open watching but not taking in whatever was on the TV.

So yesterday I decided to change the timing and waited til tea-time (or supper or dinner depending on where in the world you live) to take the meds.  Yesterday I was fine at 9pm, and today I'm typing this at 9.30pm and still feel fine.

Cracked it ..... hopefully.

But off to bed anyway... night night

SPECT scan

Not me this time.
My friend Hannah is spending the day at Manchester Infirmary having a SPECT (stands for Single-Photon-Emission Computed Tomography) bone scan.
At least I think that's the scan.  Anyway she has to spend the whole day in the Nuclear Medicine Department.  She'll have a radioactive tracer injected and then a long wait of 3-4 hours while the tracer circulates.  During this wait she has to be isolated as she will be radioactive - arrgh!
Then the scan itself takes around an hour.of lying very still.
And then another wait til she sees her consultant late afternoon to get the results.
She's had some pain in her pelvic area post surgery, and this is to check it out.
Thinking of you Hannah.  Hope there are no bone problems and no suspicious areas.

Edit at 2.30:
Not in the clear yet.  Text message to say they found something... or maybe not.. so sent for a CT and then an x-ray.. and still waiting for the results.
Edit at 5.15.
Text message to say she has to stay til 7pm as they need someone more specialist to look at the scans
Edit at 7.00 
Diagnosis - it isnt a cancer spread its a bone problem.  Phew.  An exhausting day leaving her drained and at times losing hope.

Scan-tastic month

Another drive to Salford hospital today. For another bone density DEXA scan. I had one a year ago giving a diagnosis of pre-osteoporosis (or osteopenia). Since then I've supplemented daily with calcium, magnesium and vitamin D3, so it will be interesting to compare results a year on. This scan is quick and doesnt involved any claustrophobic feelings of being inside a machine.

Because the Tenofovir treatment poses a long term risk of osteoporosis, this scan will give an up-to-date baseline of my bone health.
Bit of a panic before setting off.  Read the letter again and it said, in bold, If you have had a Dexa scan within the past two years please ring the department.
So I did, because I have. 
 Don't come in' they said.
'Why?'
'The radiographer will refuse to scan you as there wont have been any significant changes in a year'.
'This isnt to look for changes', I said, 'It's to give a baseline because of the medication I've started'.  'Will it be harmful for me to have 2 scans within 13 months?' - No
'Is it a budget thing?' - No.
Hmm, well perhaps best to double check?
They did.  And rang back to say 'radiographer definitely wants you in'.
Just giving me enough time, well no not enough time, I was 10 minutes late due to waiting at home to find out if this scan was 'on' or 'off'.
After the scan I found a lovely quiet WRVS cafe in a previously undiscovered part of the hospital away from the busy outpatients area cafe.  Thank goodness for the WRVS ladies (and lads too now) and their cups of tea and snacks.

MRI

The MRI that was, and then wasn't, and then was,.. is now Friday this week, at Macclesfield.  The last MRI I had was in August 2010, the last useful CT was in March 2011, so this imaging is long overdue.

My cancer buddy Hannah is coming with me to hold my hand and stop the nerves.  Well not literally hold my hand as she cant come further than the waiting room.  If you read this Hannah, hope you dont mind being referred to as a cancer buddy.  Hannah is the only other HCC patient I've met in person, though I do know a few via the liver forum.

Hannah gets sick to the stomach before her MRI's (and has them 3-monthly) and I get the nervous shakes and palpitations, so we will be a right mess!

Annoyed

My 6-monthly scan is due to check for cancer recurrance.  After the last one, which was a CT done without contrast dye due to my problems with the iodine dye, it was agreed by my surgeon and gastroenterologist to move me over to MRI scans which don't use the same dye.

As my clinic appointment with the surgeon approaches (May) and no appointment letter for a scan appearing, I did my usual ring round to check.  As I suspected, nothing had been booked but the gastroenterologist at Macclesfield agreed to  order the MRI.

Somewhere within the radiology department (reading between the lines, a decision made under 'budgetary restraints'), my MRI had been downgraded to an ultrasound.  Under HCC surveillance protocol, ultrasound isnt recommended as a scanning tool for cirrhotic livers, particularly within the first 3 years after an HCC resection.

Rang my liver surgeon's secretary, who is going to talk to the surgeon and see if he can over-rule that decision and upgrade me again to first class MRI.  I may have to admit defeat and make the journey to North Manchester to get this done, but it's worth the longer journey if it means a better result.

On treatment

Officially 'on treatment' as from today. Took the first of many blue Tenofovir tablets. Heppy doc said they had a bitter taste, and they do - bleuch! But bearable.

Had put off starting until after our trip south to Aunty Nora's 90th birthday party. Lovely to catch up with brother/sisters-in-laws, even if just briefly. We stayed in the hotel where the party was held, so very easy. Even so I was tired on return and slept for 13 hours last night.

Although the hotel overlooked the river at Richmond we were in the wrong place for the Boat Race and missed the drama.... swimming protester arrested, Oxford broke an oar, crew member taken to hospital with exhaustion...

A label

I've found the correct 'label' for the variant of Hepatitis B I now finally know I have.

It's Hepatitis B e Antigen–Negative Active Chronic Hepatitis B.

So now ya know! I'll tell my GP next time I see him. Bet he's never heard of it.

"You don't need this"

Driving along on the way to my hepatology appointment and what should play on the Editors CD in my car stereo but the track 'Bullets' with the lyric "You don't need this disease" (which by the way they repeat 37 times). This helped with the decision to say to my hepatologist 'Right, what's the plan then'.

My current viral load is 123copies. Normal treatment protocol for Hep B is not to treat until the viral load reaches around 2,000copies per mL. This is for patients with no cirrhosis and no history of HCC. Any measurable viral load is a risk factor for an HCC recurrence after the surgical liver resection I had. And cirrhosis makes me higher risk for HCC.

Opting for treatment under these circumstances was a no-brainer decision.

The possible downside of treatment is the drug side effects. Significant long term ones are kidney damage and osteoporosis. Because they know about these, I will be tested every 3 months to see how my kidneys and bones are coping.

I was asked by a poster on the liver forum "Can you change your decision later?" The answer is No. The drug is a type of anti-viral, or what are called nucleoside analogs. These control viral replication. They don’t eradicate the virus completely. So you have to take them for ever, as if you stop after you have started the virus will start replicate again.

I've the first 3 months supply of Tenofovir ready to start. Just waiting for baseline blood results and a Dexa scan to get a baseline for bone density.

And then we're off....

The day before Mother's Day

It's Mother's Day in the UK tomorrow, Sunday 18th.

The shops are full of obscenely large quantities of gaudy flower arrangements.

I've just heard the sad news that my dear 'cyber' friend Carole died last night. Surrounded by her family, her husband, her two sons, her parents, her brother and her sister.

Mother's Day will never be the same. As her sister said "she never gave up to cancer. It was just too big for her in the end"

Thanks you for so much Carole. Hope you are at peace.

Addendum:
This credit to Carole was added today by the moderating team on the Cancer Research 'Chat' forum, where Carole was very active and well loved:
Thanks so much Sarah for having kept us updated in the last few weeks when you yourself had so much to deal with. Even though you prepared us well for what was to come and we knew that Carole's days were counted, it is still very much of a shock to everyone. Tributes to Carole are pouring into this thread as I write this which shows just what a wonderful caring woman she was and the countless friends she made here. She posted about 1400 messages on Cancer Chat and was therefore a constant presence here, always keen to help others and be there for everyone. It is hard to imagine the forum without her contributions, the great manner she had with people and her great sense of humour.
As her son wrote in a very moving post in her own blog, "we can take solace in the fact that she is no longer suffering" and that she died peacefully. He also wrote - and I could not put it any better than him - that it is "nice to think she could create some sort of legacy to encourage others to talk openly and help each other, just letting someone else know you are thinking of them or giving them the opportunity to have a rant is a wonderful help. Nobody should have to face these struggles on their own so please help each other."
I will end simply by sharing again Carole's blog which I think is the best tribute to her - an expert and passionate blogger she was - you can read it over and over again here. Even when she was not feeling well at all, she still kept her blog updated until shortly before she went on her final journey and then her son James kept all her followers updated after she moved to the hospice. She called her blog 'What a Pain in the Bum!'and I will add, What a Pain in the Bum that she is no longer with us but I'd like to imagine her resting without any pain in the beautiful Epping Forest Burial Ground, a place she chose because she wanted a place people would look forward to visiting. And part of me would also like to imagine her still blogging to us from wherever she is now.
Carole/ Dizzie you will be deeply missed on
Cancer Chat as well as I am sure everywhere you have been.
We are thinking of all those who got to meet this amazing lady, her husband Rab, her two sons, her lovely sister Sarah and all the other members of her family who must be truly devastated at the moment.

Apologies for silence

To family and friends who check this blog and may be wondering why the long silence, my apologies.

I'm finding it difficult to use 'Blogger' at the moment.
My lovely cyber friend Carole is in the final stages of rectal cancer. Surrounded by her loving family she has maybe days, maybe weeks, nobody knows, in a peaceful hospice.

Carole held my hand as a newbie on cancer support forums, and guided me through the early stages of blogging. Her surgery for Stage 3 cancer was in November 2010, not long after my surgery. Sadly she didnt have my luck going into remission. Spinal mets were diagnosed in October 2011 and by January this year there was further spread in her pelvic area.

Her blog, and her thread on Cancer Chat have many many posts by people who have been touched by her warmth and unique way with words. At the moment things are in limboland, and despite the warm wishes on her blog it distresses me to read it. So sorry while I stay away from blogging for the moment.

Treatment

More letters from heppy doc today. Now that he has a longer medical history for me, he has been able to consider everything he knows about my hepatitis carefully. The last two clinics I had with him he took a blood test to detect my hepatitis B viral load (thats a measure of how much of the virus is detectable in my blood). Both have come back detectable, albeit very low. This contrasts with one I had done in 2010 which came back Undetectable. Prior to that nobody had ever taken a viral load test as far as I'm aware.

So he wants to discuss starting me on treatment, probably Tenofovir those lovely blue pills in the picture above, if I am agreeable. So I go to see him on March 26th (our wedding anniversary, that'll be easy to remember if I do start treatment!).

Having had this for 30+ years and never been on any medication for it, at the moment this feels like a major step. Backwards or forwards I havent yet decided.

Happy Birthday

Hepatitis support meeting - March

On March 8th the British Liver Trust is holding a one-day meeting at an hotel near Macclesfield.

There will be a presentation by a North West hepatologist about new treatments for hepatitis, and a presentation by a Specialist hepatitis nurse from a North West treatment centre. Both presentations will be followed by an opportunity to ask questions.
After that there will be 'workshops' for the delegates to find out about where to go for support and how to make themselves feel better.
During the 'Where do I go for support' session I'm giving delegates the opportunity to log on to the online support forum I use (and help administrate).

If anyone with hepatitis in the North of England reads this, I'll post the details here in case you are interested in coming along. It's a chance to meet others face-to-face, have a chat, lunch and tea, and ask questions to the professionals.

The date is March 8th, and it's at the Shrigley Hall Hotel, Macclesfield, Cheshire from 11am to 4.45pm. Contact Charlotte Bowen, Regional Support Group Co-ordinator , Tel: 01425 481320 or Mobile: 07738982558 if you would like to go.

See you there!

Marmalade

T is making home-made marmalade. Nothing odd about that. Except it's -4 degrees outside and with the kitchen window open a blizzard is blowing in instead of the steam blowing out.

Lovely smell of oranges and lemons though.

Remember those old support stocking you got post op. from the hospital? Dont throw them away. With a knot in one end they make a handy bag for the fruit pips so that pectin can be added to the mix! Very attractive indeed.

January clinic results

Emailed heppy doc's secretary on Monday 30th, to remind her I had been waiting 2 weeks for test results that should have been available within days.
Got an out of office reply which said she would be back 31st Jan.
Got an envelope in the post today (1st Feb) postmarked 8.23am 31st Jan with paper copies of the test results.
Yay! She got into work early then!

Immunoglobulins ok. IgG still a little high but continuing to come down. This is the one that fits with my autoimmune diagnosis.
Anti-nuclear antibody - 1:100 weak positive. This also fits with my autoimmune diagnosis
Smooth muscle antibody - 1:40. 1:20 is normal, but this level of 1:40 is nothing to panic about, just fits with the autoimmune again
Mitrochrondrial antibody - 1:40 (1:160 would be a problem, but 1:40 is ok)
ESR - this was to see if I was having a polymyalgia rheumatica flare. Came back within normal range, so that's good
HBV DNA viral load - detected @ 123 iu/ml. It means I have 123 of the little critters in a particular measure per mil of blood. Treatment wouldn't be indicated until a level of 2,000, so we plod along watching this low detection level at a safe distance.
Full Blood Count all win normal range.
No Liver Function results and no tumour marker AFP. I'm fairly sure heppy doc said he was taking an AFP, but its been steady at 1 for a while now, so not bothered about that. I should get it done again in April.
No letter as yet to my GP about all this, but no doubt that will plop through the letterbox all in good time. If not, back to the email reminders again!
So that's me done and dusted.

Hepatitis follow up

Letter from Dr Al today. He sums up where we are much better than I, so here is what he said:

"I reviewed Mrs S in clinic today. She is doing well from the liver point of view. She is complaining of aches and pains in the muscles that are similar to previous symptoms that at the time responded to steroids and a possible diagnosis of Polymyalgia rheumatica (PMR) was made. ... the clinical picture she is describing today might be PMR. ..... I would like to do an ESR (erythrocyte sedimentation rate - its a way to measure inflammation in tissue) before committing her to a course of treatment"

He also says he will repeat my Hep B viral load, take another set of liver function tests and alpha-fetoprotein tumour marker and let the GP (and me) know the results as soon as.

Hepatology clinic

Had my 3-monthly check with Dr Al on Monday 16th. He's the doctor checking on the state of my liver. We looked at last September's test results, and he's happy they all look stable. Then I have 5 new vials of blood taken to test them all again. Logic tells me it would be more sensible to have bloods done a short time before clinic so that we are not reviewing out-of-date results, but who am I to advise on running NHS clinics!

Important results such as the tumour marker and the liver function results will be sent to my GP next week in a letter (copy to me). But the full set won't be sent out as standard. If I want those I will have to wheedle them out of his secretary.

He gave me the results of my Hep B viral load which was taken last September. The viral load measures the number of copies of the virus floating around in your blood stream. Patients with an active virus typically have 1,000's or even millions of copies. I have exactly 177 apparently! In the 30+ years of having the virus nobody has ever tested my viral load. I wonder why not. Dr S at Macclesfield once told me it was 'undetectable' but all that means is the testing equipment is only sophisticated enough to get down to a certain level. I will always have some virus in my system but it's only possible to measure smaller quantities as the measuring equipment becomes more delicate.

I told Dr Al about my symptoms of aches and pains which have come back after an absence of about a year. He said it sounds like the polymyalgia has flared again, and took an ESR test which measures inflammation in tissue. I'll get the result of that next week and if its not normal then I get the green light to take some low dose steroids again.

Apart from the fact that a 20 minute appointment in Salford takes nearly 5 hours out of my day, it went ok. It was nice to be seen by Dr Al again, as last time it was his registrar Dr B. Dr B is writing up the research article on my case, for publication by the British Medical Journal. But apparently his first draft didnt get an A* in Dr Al's view so he has to do his homework again.

Here's to blogging

Last week I met Hannah, who had come across this blog, and as someone also diagnosed with HCC has hopefully found it useful.

Here's to blogging!

Hope your check-up goes well Hannah. Meet up again whenever you want!

Fiona

Story of a legacy

Browsing iPlayer yesterday I came across a short programme about a young girl, Nicole Dryburgh. Nicole was diagnosed age 11 with a tumour on her spine. Her story is here
http://www.teenagecancertrust.org/get-clued-up/young-peoples-stories/nicole-dryburgh/
She died in 2010 at 21.
I'm not sure why her story was on iPlayer at the end of 2011, but she raised a lot of money for the Teenage Cancer Trust and won many achievement awards.
Not only was she beautiful, but she came across on camera as a very positive and compassionate person, in spite of her circumstances.
Her mother was interviewed talking about her, and it struck me that the mother positively glowed with the memories of her daughter.
It seemed that part of Nicole's legacy was not only to leave behind tangible evidence of herself - she raised over £74,000 for a Teenage Cancer Trust unit at the Royal Marsden Hospital in Surrey and £43,000 to fund ‘Nicole’s Sweet’, a paediatric neuro-rehabilitation suite on Lion Ward at King’s College Hospital - but she left behind extraordinary and happy memories for those who loved her.

I follow a number of cancer blogs, and pop in and out of cancer forums. Many cancer patients use war analogies in their stories. They 'battle' against cancer. They declare confidently they will 'win' over the tumours. They 'fight' for each day, frightened it might be their last. Nicole herself didnt use these words, though after her death her family did. Yes she had been angry in the early stages (she had periods of remission). Instead she described her illness and treatment in a straightforward matter of fact voice. She had wit, she had humour, she had a positive attitude, she was determined.

Fellow blogger Carole http://caroleandcancer.blogspot.com is in a bit of a bleak place at the moment. Diagnosed with stage 3 rectal cancer in April 2010 mets in Carole's spine were then diagnosed in October 2011.
Carole, like Nicole, is fundraising. Carole, like Nicole, has a special way with words. Carole, like Nicole, envelops those around her with warmth and love.
So here's to Carole and the knowledge that through your blog, your input to the cancer forums, your fundraising, there will be always be a right Pain in the Bum legacy nobody will forget!

Happy New Year

A bit late, but Happy New Year to all