"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)

Monday, 21 May 2012

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!

Friday, 18 May 2012

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.

Tuesday, 15 May 2012

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.

Monday, 14 May 2012

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...

Tuesday, 1 May 2012

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