"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, 29 September 2011

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.

Saturday, 24 September 2011

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.

Friday, 23 September 2011

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.

Monday, 19 September 2011

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.

Friday, 16 September 2011

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.

Tuesday, 13 September 2011

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.