"There's a myth that anyone who has a liver problem has brought it on themselves" This quote is from a Crohn's disease patient living with a blocked portal vein hoping for a liver transplant (Independent 31st Oct 2010)

Thursday, 26 April 2012

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.

Tuesday, 24 April 2012

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.
'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.

Wednesday, 18 April 2012


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!

Thursday, 12 April 2012


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.

Sunday, 8 April 2012

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...