"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, 30 September 2010

Pain relief

This will be my 3rd night on the sofa. No marital tiff but my insides and incision outsides are too sore to sleep on my side as yet and the bed is no good for sleeping propped up. Well more accurately I'm sure I snore. It is nice to wake up to a late summer misty view of White Nancy.

It's 2 days since I stopped pain killers. I'm definitely a wimp so Mr o'Blimey was obviously as particular and careful as the staff said he was and has minimsed damage. I was supposed to have an epidural abdominal block for post op pain. When I came round in recovery it wasn't numbing the right bits. I had sensation on my abdomen but lost muscle control above the diaphram and in my legs and arms. Not helpful when you try to breathe or move! After a couple of attempts at with/without the epidural it was obviously not right so they took it out. Self inflating lungs - hurrah! After that total blank for about 4 hours. Whatever care I was getting it must have worked as I by-passed High Dependency and woke up in the evening on the ward. I got a PCA infusion pump with my personal morphine supply. 'It won't work more often than every 5 minutes' says the nurse. In my stupour I took that to mean I should press it at least that often. Didn't take long to twig that I could try leaving it as long as possible and was chuffed to be at 2 hourly after a short time. 'Did I use too much' I asked when the nurses took it off me. Nope, only the equivalent of us giving you one injection.

I did prefer it to oral codeine though. This left me spaced out, "sleeping", definitely with mouth open, drooling and with a squint. Goodness knows what adding a sleeping pill would have done to me.

I got in a right tangle with the lines. A nasal canula with oxygen battled with the jugular IV. Tubes from elbow, wrist and back of hands. Drainage tubes etc. PCA buzzer looped over my wrist (my choice, if I dropped that no-one would notice for ages) and nurse buzzer tucked under pillow. Plastic 'cat's cradle'.

Wednesday, 29 September 2010

Signing in

First day back toward normality. Normal food, normal sleep, normal functioning body parts!

The nurses were hepato-biliary trained. Two on duty with up to 20 patients, supported by 1 unqualified auxilliary. No general nurses. Really really busy. Excellent care for those being monitored by machinery the nurses knew to speedily respond to. Not so good if you just needed Florence Nightingale to mop your brow and take your pulse. The younger amongst us (yes that's still me!) tended to be more pro-active about asking for checks when things didn't feel right. I felt sorry for the elderley ladies who didn't want to 'make a fuss' and lay passively waiting to be attended to; because the machines weren't going to bleep until things had gone pear shaped.

Very noisy. The Victorian infirmary floors bounced as trolleys and running feet sped up and down, shaking the beds. Emergency care and activity went on 24/7. Declining to be doped into a stupour at night I plugged myself into the bedside TV headphones and slept with re-runs of Friends blotting most of it out.

The on-call doctors were rushed off their feet, bleepers going simultaneously with 2 or 3 nurses' station phones. The calmer morning round of consultant/entourage of registrars and house officers with clip boards more familiar to tv hospital dramas.

Onwards to discharge, after I'd convinced the physio i could walk without a granny zimmer and could manage some stairs. And after I'd been packed up with bags of pills, dressings and alarming looking giant staple removers to give to the district nurse in a week!

Tuesday, 28 September 2010

Home Sweet Home

T writing
Home at 9pm. F has had some porridge - says makes her realise how poor the hospital food was. She'll sleep downstairs for a few days. Tomorrow she will probably sign in here herself.

Monday, 27 September 2010


T writing

The latest news is that F (Her Majesty) may be coming home on Tuesday night. Today she has been taking orders from the physio.


T writing

Text this morning from F to say she is having breakfast.

Sunday, 26 September 2010

Baby Steps

T writing

J visited F at hospital with me for the first time today. We found her bed empty - in a good way - she was sitting on the bed of another patient. It was her mid-shuffle point on the way back to her bed - she is only up to making essential journeys at the moment. No longer on oxygen, still tired, mouse-like eating.

Saturday, 25 September 2010


T with update

I visited this evening. F able to walk with my help to the bathroom at the end of the ward but she is still very tired and still on oxygen. She'll be given a sedative to help her sleep tonight.
For some reason in this photo she has removed the dustjacket from Wind in the Willows. She has that teddy with her at the moment.

Friday, 24 September 2010


T with update
This evening F awake, able to talk, but very sleepy

Post op - Good News

It's T writing with this update

I spoke with the surgeon post-op. He said it went well, F is in the recovery room and they hope she will be able to go back to a general ward rather than to their high dependency unit.

Thursday, 23 September 2010

Admission day

Thanks to everyone for their cards, phone calls, emails, texts, prayers and thoughts.

T will be updating this blog until I'm online again.


Tuesday, 21 September 2010


A long day at North Manchester hospital.
CT scan at 9.15 to check the cancer hasn't spread to the lungs. The radiographer is experienced at mammograms but hasn't inserted an IV for contrast before. She asks if I want the experienced radiographer to do it but I think go for it she has to learn on someone. She manages fine despite giggling with nerves. Scan over and done quickly but I have to sit for 20 minutes to make sure I don't keel over. At this stage neither Tom or I have had breakfast due to 7am start, so I'm a bit dehydrated.
Off to the cafe for some breakfast. Egg and beans on toast and tea - yum. The cafe seems good.
A short step away is the Macmillan office, so we call in there and pick up leaflets. The staff are great and give me contacts for support groups nearer home.
Now we have to find Cardio-respiratory for the echocardiogram at 11.15. It's at the other end of the hospital. I'm seen promptly and it seems there are no worrying changes to the mitral valve prolapse.
Back down the long central corridor to the cafe again, passing the car park office where we book a permit to save juggling small change in the pay and display machines. Thanks for that useful tip Ruth!
Buy some sandwiches and drinks and find
a suntrap with benches for lunch.

T spots a 'bridge' and whips out his camera.
In fact it's a walkway between two wings of what used to be the Manchester workhouse infirmary. In the photo you can see the Victorian structure, part of which is still in use.

Now we have to navigate to 'Outpatients E' (yes there are others A-D) for pre-op at 1pm. Again I'm seen bang on time. It seems the bloods taken on September 9th will suffice so no need for more. Just an MRSA swab up my nose, an ECG and a long check list of boxes to tick on pre-existing conditions. Apparently my blood pressure is low. By now I have the gel residue from the 'echo' and sticky stuff from the adhesive ECG electrodes so I fancy a shower!

Patient T has spent all day sitting around in waiting rooms but now he joins me for another informative chat with Clare the Macmillan nurse about 'operation day'. Perhaps finding out I will have 7 tubes (2 up my nose, 1 in my jugular, 1 in the back of my hand, 1 in my wrist/pulse, 1 in my spine (epidural for four days!) and a catheter - oh and a fingertip pulse oximeter) is too much information.

A last a final coffee in the cafe and a quick call to J to put the tea on to cook and we're off home again.

Saturday, 18 September 2010

Survival tips

Friends and family have promised to bring me treats to eat in hospital ........

...... and afterwards I won't be able to drive for a while

Friday, 17 September 2010

Family photo album

Visit by my brother. We look through family photograph albums dating back to 1951.

Here we are in 1958 ................................

........................ and in 2010

"I don't believe it"

Hep B virus
Good news arrives. My HBV blood tests which disappeared off to the Manchester Royal Infirmary on 4th August have come back - 45 days later. They show no sign of Hep B DNA, in fact no sign of the virus at all. The letter reassuringly says "this suggests you have cleared your hepatitis B virus".

"Jus like that" (Tommy Cooper)

So that means I've been clear since at least August and now all I have to conquer is the cancer

Wednesday, 15 September 2010

Lovely ladies

Have told my clients I'm going to be off sick for a while. None of them like the idea of having a new carer and are adamant they will be pestering the 'office' to have me back as soon as I'm fit again. It's very sweet of them, but out of our control as I'm not guaranteed the same work back after more than 2 weeks away.

Tuesday, 14 September 2010


Another day of chasing telephone calls.
My GP has the results of my HBV viral blood tests taken by Dr Caravan-a-nan the consultant who will treat the hepatitis. They are gobbledygook to her and she suggests I ring his secretary.
Either Barbara is chained to her desk or she walks round at the end of a long phone cord, as she always reassuringly answers the phone first time. Yes she has the results and she typed them into a letter on Friday. She'll remind Dr Caravan-a-nan to sign it and will post it post haste.
These results will give me an idea as to how active the virus is at the moment and what the anti-viral treatment might be.

Clare, the Macmillan nurse, rings with a series of 3 appointments on pre-op day Tuesday 21st. We'll need to be up and away early to beat the Manchester rush hour and get to a 9.15am CT scan at North Manchester General Hospital.
Then an echocardiogram at 11.15 to check my mitral valve prolapse.
Pre-op at 1pm to make sure I don't have MRSA etc.
And to round it off another chat with Clare to talk through what will happen during the 5 hour op and the 2 days in the High Dependency Unit. T & J need to prepare for tubes and beeping machines if they want to visit.
I ask her for the results of the blood tests done September 9th. My AFP is up again. From 0 to 42 to 152 now. It's the tumour that produces AFP.


Went to college today. Partly to collect my last years NVQ certificate. (I got it in June but the pass Units were wrong so they had to get a new one and it's ready to be collected). And partly to let the staff know I want to do the course distance learning. Disappointing I won't be up to being in class for 3 hours each week, as the group this year look like an interesting mix.

The car park is full and I have to walk a long way. Luckily I brought Granny Annie's stick which helps and also helps to get an instant lift pass to the classroom up 4 flights.

They can use last year's photo for this year's pass thank goodness. I manage an hour and then make my excuses and leave as I need to be home for a GP phone consult.

Monday, 13 September 2010

Sick Note

Break the news to work that as from Monday 27th September I'll be off sick for some time.
Pam doesn't sound surprised. I think word has been slowly spreading since July as I have missed the occasional shift in order to have a scan or blood test.

Sunday, 12 September 2010


A short walk near where we live on a sunny September day. The hill in the distance is Shutlingsloe, known locally as the Cheshire Matterhorn! We've walked up and down a number of times and J 'conquered' it as part of his Duke of Edinburgh. Can't manage it now though. Flat strolls are possible but hills leave me breathless.

Friday, 10 September 2010

Now you see him now you don't

After what seemed an age of a wait (2 hours) saw the liver surgeon at North Manchester General Hospital. T and I had taken stuff to do in the waiting room, but ended up entertained by a row of 3 closed doors. The centre one was where the consultant was rumoured to be but apart from a constantly changing stream of nurses and support staff going in and out, no patients ever seemed to pass through. The patients went into the 2 doors on either side, and sometimes came back out! Sometimes a nurse would go into room 1 and come out of room 3. Or come out of room 2 and go back into room 1. It was like a stage comedy farce where doors on either side of the stage have actors going in and out whilst just missing each other with perfect timing. Finally all was revealed when we were allowed to cross the threshold of Room 3. All 3 had interconnecting doors and the consultant was moving between all 3 without popping his head out into the waiting room.

He seemed nice and from a technical point of view said the tumour was in a good place for surgery. T overheard the nursing staff refer to him as 'Blimey O'Reilly'

We then had an hour or so with the specialist nurse who will look after me from now on. She confirmed it is definitely cancer - they could tell that from the MRI. A biopsy taken during surgery will determine the 'type' and whether I will need chemo.

I go for pre-op on Tuesday 21st which will include as an extra another CT scan to see if it has spread to the lungs and a heart echo as I have a mitral valve prolapse. A sort of buy one get one free.

Surgery will be on Friday 24th starting first thing. It takes 5 hours via laparoscope as they go slowly slowly and the workspace is pretty tiny! Better for me but worse for the surgeon. Apparently he pops everything into a little bag to make sure nothing gets away before retrieving it through the mini slit. Made me think of the Tesco checkouts where the machine says "do you have your own bag?" and adds green clubcard points to your receipt - "every liitle helps". Then I go to the High Dependency Unit for a couple of days. After that back to the ward and lots of prodding to get moving again. Apparently the liver should have regenerated in 2 weeks which is pretty amazing.

Around 5 days in hospital and then home for 6 weeks or so. If I need chemo that will be during the 6 weeks recovery period, hopefully at the Christie hospital which is closer to home. The treatment of the hepatitis may have to wait until after chemo.

And to clear my conscience I've registered with the NHS organ donor list. Apparently I'm still usable, inspite of the hepatitis

Saturday, 4 September 2010


Pharmacy work is too exhausting and I hand in my notice. I should work until 4th October, but with holiday and sick leave today will be my last day.

Thursday, 2 September 2010

At Clarence Mill cafe

Almost too hot to sit in the sun for a sandwich lunch outside the Waterside cafe. Discovery Centre is through the arch. I'll carry on printing photograph orders for them.

Wednesday, 1 September 2010

Another needle

I've worked out which person at the surgery is the best at taking bloods. I ask for an appointment with her for the clotting blood test. I think we'll become close friends over the next few months!
Results are 'normal'. Yay. I won't bleed over too many people in surgery.