CT scan review

Letter in the post today from heppy doc. copy to GP.


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?

Splat

A few days ago a pigeon with a bad sense of direction flew into the window downstairs with an almighty bang.

Now we have an oily bird imprint on the glass.

Result!

Copies of blood test results done at Salford have arrived in the post. Gave the secretaries at my GP practice a box of chocolates.

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

NHS snail mail

Try as I might I dont understand the problem with sending information between different NHS trusts.

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.

CT scan

Had my 6-monthly CT scan checking for liver tumours at Salford hospital yesterday. Don't know when I get the results, I'm still trying to get copies of the bloods taken nearly 3 weeks ago.

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.

One year

One year today since the cancer surgery.
Another 4 to go and then I can say I'm on the right side of the 50% survival statistic.

And yes... I cleaned the fish tank! Happy fish.

I meant....

I meant to clean the fish tank on Tuesday, but went on 'Freegle' instead and recycled a mantle mirror that had been stored unused in our garage for years.

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.

Two letters

Two letters from the liver clinic arrived in the post:

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.

CT Scan

The time for my 6-monthly CT has come round again. Having it done at Macclesfield and the images forwarded to Salford and North Manchester hasn't worked.

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.

I shouldn't have had cancer

Three monthly check-up at Salford liver clinic yesterday. The spreadsheet of monthly blood tests over the previous 3 months looks optimistic - well MY copy does, as although both my GP and I forwarded our monthly copies to Dr Al nobody at Salford arranged to have the figures entered on his system. Monitoring will be reduced to 3-monthly. All now done at Salford. I'm sure this is an ok decision, but will be sorry to loose my easy access to results via the GP. Bet I never get sent copies from Salford. T suggested I ask my GP to do an intermediary set at 6 weeks, for my piece of mind. We just don't tell anyone else!

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'.
"In where?"
"Gut" ..............
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.

Visit to A&E

As a sucker for medical programmes I've watched via Channel 4OD the observational series "24 Hours in A&E" about London's King's College Hospital emergency room.
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'

'T' asked
Me and
I asked
the receptionist:
"Could we have some strapping for
Fiona's hurty leg?"
Reception asked the Practice Nurse,
The Practice Nurse
Said, "Certainly,
I'll go and get the bandage
Now
Before she goes to bed."

The Practice Nurse
She rang us
And went and told
'T'
"Don't forget the GP must
first check out the leg."
The Practice Nurse
Said sadly:
"You'd better tell
Fiona
That no nurses nowadays
Can bandage up
a leg"

The GP
Said, "Fancy!"
And thought it might
be broken.
She turned to Fiona, and
suggested instead:
"Best to get an x-ray,
Off to emergency,
and if its broken,
they'll put a cast on instead."

The Triage nurse said
"X-ray":
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,
"Deary me!"
And then he said,
"Not broken"
So I said, "Thank Goodness,
Can you bandage my leg?'
"Nobody,"
I pleaded,
"Could call me
A fussy one;
I only want
A little bit
Of bandage for
My leg"

The Doctor said,
"There, there!"
And went to
Get some bandage
The Doctor
Said, "There, there!"
And went to get some tape,
The Doctor said,
"There, there!
I can do a bandage,
Here we are
All fixed
I’ve bandaged up your leg"

(And you know, he did it exactly how T had been bandaging it)

Leeds Festival 2011

J and friends are at Leeds Festival today. Headliners on the main stage today are the Strokes. J will be particularly thrilled I'm sure if they play the same set as at Reading Festival yesterday. The set includes 'Someday' (click Replay, below) which J recorded for his multi-track/mixing task for last years AS level for which he got an A overall.

Accident

Missed a step and twisted my ankle today.


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.

Diet and liver disease

New edition of the British Liver Trust publication 'Diet and Liver Disease' is available as hard copy or to download online here: www.britishlivertrust.org.uk/home/order-publications/download-publications.aspx

Still in remission

AFP blood test results are back. This is my 4th cancer tumour marker test since surgery. Still at 1, well within the 'normal' range of 0-10.
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.

Cyber support

3-monthly AFP tumour marker blood test today. I have a love/hate relationship with this test. I want it done for the reassurance a good result gives, and I hate the moment of opening the envelope to read the results in case its gone up.

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!

July bloods - results today

Picked up the blood test results. An improvement again on June - hurrah. The ones that show inflammation have gone down again: less inflammation. The ones that show how my liver is functioning are balancing out even better within the normal range. Whatever I'm doing in the way of diet, excercise, health supplements, work/life balance seems to be working at the moment.

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!

July bloods

Third set of bloods taken. Nurse practitioner getting to know my history now! These are sent off to Salford for Dr Al, and I have a 4th set taken when I see him in August. Quite a spreadsheet building up.

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.

Reason to become a donor - Number 3

Someone said recently 'if you're willing to receive an organ, then you should be willing to donate one'.

Hear hear.

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'.

Work hours reviewed

Meeting at work last week to review my hours.

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.