A drug, Nexavar – also known as Sorafenib, can prolong the lives of patients with advanced liver cancer by up to six months. but has been rejected for use in the NHS in England, Scotland, Wales and Northern Ireland.  Nexavar is routinely offered to cancer patients elsewhere in the world.

NICE, (The National Institute for Health and Clinical Excellence), or should that be “National Institute for Cost Effectiveness” because they have more to do with cost effectiveness than clinical excellence!  NICE, said that at about £3,000 a month, the cost of Nexavar was, “simply too high”.

Cancer Research UK’s chief clinician Peter Johnson said the decision was “enormously frustrating” because there was no doubt about the drug’s effectiveness.  Acknowledging that it is expensive, (define expensive),  he said: “There’s no alternative treatment and there are no other places for people to go”.  However, he pointed out that whilst the only issue is cost, the number of patients affected are probably only six or seven hundred patients a year.”

The decision was similarly condemned by Alison Rogers, chief executive of the British Liver Trust,  and Mike Hobday, head of campaigns at Macmillan Cancer Support.  Mike Hobday said, “It is a scandal that the only licensed drug proven to significantly prolong the lives of people with this devastating disease has been rejected, leaving them with no treatment options…”

Andrew Dillon, chief executive of NICE  said, “The price being asked by [the manufacturer] Bayer is simply too high to justify using NHS money which could be spent on better value cancer treatments”.
Like what? Prat! There ARE none!

And the group’s clinical and public health director, Peter Littlejohns, added the drug was considered “just too expensive” by its advisory committees.
Wrong! Look at your own remit.  It has a cap on affordability of £30k per patient for a quality year of life, but given that it only extends life by 6 months, then the cost per patient is half the £35k cost, £17.5k.

Dillon is reported as saying that he loves his job and says, “This is the best job I have ever had.”   Bollocks! You like the £130,000 salary you get!  He has been described as ‘… quiet, calm and understated, with all the apparent passion of a paperclip’.
Well Mr Dillon, you need to get a bit of passion, because you have condemed a few hundred people a year to an earlier grave and a poorer quality of life than possible and necessary.  For £130,000 a year!  You are not worth the blood that runs in your veins.

Here’s a thought; It costs 30,000,000 per year to keep NICE open.  There are about 46 employees.  How the hell does it spend the money?

So, how could you spend the money that extending my life is not worth?
You could pay a top footballer, say, Frank Lampard, to kick a ball of wind around for 35 minutes. (£630,000 per month).  No, let’s not go down that route, it’s too easy a target.
Let’s get real!

You could pay for a years supply of Methadone for just two drug addicts.  After all, there’s only 147,500 of them at £14,924,067 a year in the UK.  Source: Department of Health.
Actually, the effectiveness both medically and financially is questionable, but we have NICE to make those sorts of decisions don’t we?

You could lock up a drug dealer for his crimes for 12 months at a mere £31,106 a year.  Source: Scottish Prison Services (couldn’t find the UK figures).

You could remove 176 unwanted tattoos from people who have been a bit silly.   There were 187,086 in 2006 at a cost to the NHS of between £37,000,000 to £300,000,000 in 2006. (The NHS doesn’t know the exact figure but offers these as a guide). Source: House of Lords debates

You could employ Andrew Dillon, CEO of NICE for 3 months.  He gets £126,000 a year.  Source: Cabinet Office via The Guardian.

I have been a little anxious for a few days now.  I should have gone to Birmingham to get my Post Op Biopsy report but I cancelled it as I would rather speak with Mr Borley my original consultant.  This was this morning.

The bottom line is that there are no outstanding tumours.  They got everything that the CT scans, MRI scan and surgery revealed.  To all intent and purpose, I am clear!

Of course there is always a possibility that it can recur, although the longer time goes on the less the likelihood.  No Chemotherapy, nothing else to do.  I’m not out of the woods yet, but this is about as good news as I could possibly get.

I know I’ve said this many times before, but many thanks to everybody who has posted comments on the forum.  It really does make all the difference in the world to know that there are people out there sharing this with me.

I will continue to post updates on the cancer stuff, but I will switch focus a little to the more fun side of the site, so don’t stop visiting and don’t stop your comments.

Next job is to try and work out a way to wrangle another holiday.

After a loooong wait, I finally had an Ultrascan which proved all clear.  No fluids, so the drain could come out.

We went up to the ward as per our arrangement we had made on Wednesday, but nobody knew of it.  The Sister was concerned that they would need a bed for me and that normally it requires me to be under observation for 6 hours before I could go home.  Also, they had no nurse available for 3 hours.

Eventually, a nurse called somebody who said they would see to me in 5 – 10 mins.  That stretched to 45 and I was getting more and more anxious.  Eventually, a Consultant arrived and ushered us into a side room.  He said that it seemed silly to wait 3 hours for a two minute job and that he would do it himself.

I asked if he did this often, “I take livers out for a living” he replied.  “Yes, but usually your patients are unconscious!” I said.  He told me not to be so anxious.  How the hell do you do that when the last time I had this procedure it was agony.

“Just snipping the retaining stitch”, he said, “Think of your favourite beach”.
“Sorry, you’re going to need more than simple diversionary tactics on me”, I said.
“Okay then, are you ready? he asked “,  “Yes, get on with it,” I said in anticipation.
“Get on with what?”, he said, waving the drain in his right hand, “It’s out”.
No 6 hour wait either, I could go home.

I couldn’t say that it was painless because that would imply I was aware that something didn’t hurt.  I just didn’t know he had even done it!  A total non-event. I was, and am still, gobsmacked.

It turns out that he was the surgeon that had done the operation in the first place.  Incidentally, I also learned that the radiographer that had done the Ultrascan earlier in the day was the same bloke who did the RFA on the liver during the operation.  Privileged or what?

The District Nurse came around yesterday and we spent an entertaining 30 minutes removing the clips from my chest.  Oh how we laughed!  God forbid there’s a next time, but I want Velcro if there is.

I got the Doc to come around as well because I was having a lot of pain from the site of the drain.  Out of proportion to what it is.  He gave it the all clear regarding infection, but confirmed that it was a waste of time as it wasn’t actually doing anything.

I called the hospital, who said that if I turn up on Friday on the ward, they will remove it then.  Once that damned thing is out, I can start to feel that I am on the mend properly.

The whole episode with the drain is farcical. When I was discharged from hospital, I was given a ‘portable’ collection bag.  However, they could not find an appropriate one so they used a 500ml Urine drain bag. That’s 100 times larger than it need be.  So in total, I have 12″ inside the chest which emerges at the waist.  (Incidentally, there is a hole in the tube as it exits the body, only spotted yesterday by the District Nurse).  This tube then is attached to another 12″ of tube on the bag, then 10″ of the bag itself, then 6″ of further tubing and tap.  Stood upright, the whole thing drags on the floor and therefore needs to be tied to the leg day and night. All this for a maximum of 5ml which stopped on day two out of hospital.

It was nice to have had a visit from a friend Richard Steele today, always makes me smile and always a gentleman.

I’ve been home 5 days now and have begun to realise the attractions of watching paint dry.  Firstly, it is infinitely more exciting than watching Formula One!  Secondly, it is less traumatic to watch than The Jeremy Kyle Show.  I’ve got to the point now where I’m trying to guess the date of Top Gear re-runs on ‘Dave’ from the length of Hampster’s hair.

The highlight of today was the district nurse coming around this morning to change dressings.  I am having the clips taken out on Wednesday.  I had a similar job done late last year and it wasn’t particularly painful.  The bonus is that I should be able to have a ‘proper’ shower.  Subject to the nurse being prepared to waterproof the drain and wait for me to have the shower.

I’m almost afraid to temp fate by saying I’m feeling a little more like myself, (albeit I realise there’s a fair way to go yet), but on my scale of ‘wellbeing’ I feel about 6/10 at the moment, compared with 4/10 when I came out.

I was looking for some link info to the blog earlier on and came across this old article from the ‘Echo’ last November.  (Businessman sets up project following illness).  They got my birthday wrong and it’s got a couple of minor inaccuracies, but it’s not far off. 

It seems so long ago now, I can’t believe so much has happened since.  Blimey. it’s only just over a year since we went to Brazil!  Doesn’t time fly when you’re having fun?

It’s all well and good being back home, but there’s only so much Jeremy Kyle the brain can take in.  I am itching to get on with things but I am still blowing hot and cold at the moment so I have to take it easy. 

I tried playing my old EKO acoustic this afternoon and it’s far to heavy for me to use at the moment, so it makes sense to get a new one sooner than later.  I have been making a mental list of stuff to sell on eBay in order to justify me buying the new LAG Tramontane 222 acoustic I’ve got my eyes on. 
(Click the image to see one seriously nice guitar!)

I am looking forward to being able to relax a bit more with Karan over the weekend, instead of her having to run the business, shop, clean and look after me.  D & S are coming round for tea & bickys tomorrow evening for a while and that’s something to look forward to as well.  I hope to catch up with Ivan on Skype sometime too.

I’m back home!

To be honest, I was not expecting it today as I had a bit of an upset stomach first thing this morning.  They are pretty hot on that sort of stuff but I was okay after about an hour.

I did a bit of prep work, washed hair, had shave, best clothes on, loads of ‘smellies’.

The Doctors came round, took one look and said “You’re going home”.  I’ve had to take the drain with me, but we’ll deal with that later.

Tomorrow, I shall spend a bit of time responding to all those posts I haven’t been up to responding to yet.

Please don’t stop your comments coming.  They are invaluable to my recovery.

We all know the rules.  Low, (not no), volume output, light in colour.  Okay? Agreed?

No!

Woke up this morning, (as all good blues singers do), and looked at my drain. Nothing, nada, ziltch, empty!

One of the doctors who does his rounds solo came around at 8.00am  ‘How are you doing Mr Nuttall’? ‘Very well’, I said, pointing at the empty bag. ‘Yes, but we will have to wait until it is clear’, he replied.  What?  Oh forget it!’

9.30 and the main team came around.  Basically, they are very pleased, but want to see what happens during the day.  Then tomorrow, it’s either, The drain comes out and I go home 6 hours later, or, they shorten the tube, give me a new bag, and let the district nurse look after it for a month.

Both I can live with, (no pun intended), but the first option is best for me.  The second one whilst seeming okay but has the drawback of removing the drain after it has been in so long.  The drain is a 3/8 inch tube entering at the waist and threading internally into the liver. It cannot be removed under anesthetic, local or otherwise and therefore something you don’t want to do very often.  When it has been in the body for some time it starts to integrate itself and is that much more painful to remove.

Patience is the name of the game.  It is played with two teams, ‘The Pros’ and ‘The Amateurs’, theoretically they are both on the same side but the ‘Pros’ have the advantage of being able to reposition the goalposts at any time.  They also have the whistle to signal the end of an otherwise undetermined length game.  Finally, they get to name the playing field.  A game best to avoid!

Bloody big setback today. The infection is no longer an issue. It turns out that it’s a ‘bile leak’.

The Doc said, ‘We just need to be patient’, which is a euphonism for ‘You’re not going home’. They have to wait until the drain slows down to an acceptable rate, (not far off), but most importantly, the colour must lighten considerably. If this hasn’t happened by tomorrow, then it’s a camera down throat. Then either keyhole or full surgery to repair the leak.

Not what we all wanted is it?

Sorry I’ve not been posting much new stuff. To be honest, I’ve not been up to it.

I took a bit of a nose-dive a couple of days ago and have been feeling pretty sorry for myself. I keep going dizzy and light-headed and breaking into a sweat.

They took me off the epidural on Friday and replaced it with Paracetamol and Oramorph, (Oral Morphine). Unfortunately, the Paracetamol is dispensed from the drugs trolley when it does the rounds. The Oramorph has to be requested by me and is then prepared by the sister who then dispenses it personally when the workload permits. Annoyingly, nobody told me this until this morning. The consequence has been that I have undergone one 12 hour period with Paracetamol as my only pain relief.

I have had all my tubes removed now except the large drain from the liver. It appears that I have acquired an infection in the site of the operation on the liver and they are monitoring that to see when the drain can come out.
However, I have been looking at a release date of around Thursday, but Karan asked the Ward Sister when I could be home. She said that providing that the Liver drain is clear, I can come home tomorrow. I was gobsmacked. In reality I think that Tuesday is more likely.

I’m looking forward to my own bed and my own telly and Karan’s cooking and sitting in the summerhouse, (the shed), and playing my guitars, and phoning all my mates up. In a funny sort of way, I’m also looking forward to looking at what has just happened, to be able to evaluate it all and to look to the future. One thing I can promise, it will be different.

They called a registrar out and even he struggled to get a line in, 2 attempts.  He took the bloods and the nurse got  the antibiotics in.  I’m boiling so need to get temperature down again.  No sleep tonight then…

Here we go again.night shift. New regime. New attitude.

Still no new canular, still no bloods taken. Both these should have been done before 8pm by the last shift. The new doctors came around about 10.30. First thing the man in charge said, ‘Good news, you bloods have come back clear’

I pointed out that I have not had any bloods taken. He said ‘ I meant those from your operation 2 days ago. I said it was on Tuesday, he said, ‘Yes, the 19th’

I pointed ot that the canular and the bloods still had’nt been dome

They changed my epidural anb now that has all but failed because they didn’t give me the paracetamol suppliment.

My temperature is back up through the roof and I feel like shit.

A nurse just came round and failed the most painful canula injection I’ve ever had.

I’ve slept pretty well the last couple of nights which is great. I’ve also been pretty much pain-free as well, which is even better.

I was allowed liquids this morning so I sent out for couple of pints of lager for me and one of the lads. (Alright I’m lying; blame it on the drugs). By dinner time I was eating. This afternoon I went for a walk with two nurses, by teatime I went for a walk on my own. (The nurses were washing their hair).

During the day I’ve had a small line and the central line removed from my neck. Two canulars inserted in my arms and both removed again because they failed.

There was one successful one inserted in my wrist and attached to the saline drip, which then removed an hour later because I no longer need a saline drip. They came to remove the canular and I said, please leave it in, you may be able to take bloods because it is a good ‘Pink’ line. So they took the canular out anyway and came back 30 minutes later to take ‘bloods’. Unfortunately, two attempts failed and I am now eagerly awaiting a senior blood taker. You couldn’t make this up could you!

One funny thing happened this morning. One of the doctors whilst doing his round, managed to trip over my catheter, (that’s the one that drains the… well you know…), we laughed! Later in the day, a nurse was washing me together with a nurse that had been with the doctor in the morning. She was relating the tale o the new nurse. We laughed. The new nurse commented, ‘What an idiot’, turned around and fell over my catheter line. We laughed

Hello again,

Went up to see Roger today and was very relieved to find him looking reasonably well and in quite good spirits, all things considered.  I knew he was going to be okay when he said “I’ve got my Whinge of the Week sorted”. 

However, when I returned after the visiting break, he was not happy.  The line in his neck which was used to take bloods and give all his medication through had stopped working and was leaking. This meant he has to have another canular put in, which he hates (they hurt and they don’t last two minutes).  His line would have lasted days, now he will probably be having several canulars put in.

But, the good news to end with is that the Nurse said that he would be going back onto the Ward tonight.  We were both surprised as last time he had two nights in HDU.  She reassured us that they would not put him back if he was not well enough and said he was ‘doing very well’. 

He’s given me several pages of notes to add to the 17th August entry of all the mishaps when he arrived but they will have to wait for tomorrow, sleep beckons.

Oh, Roger has just telephoned to say that he is now on the Ward and guess what, the canular that was put in earlier has not worked and they had to put another one in!

He also said he is reading his Blog at this moment so Roger, “Get some rest and and see you tomorrow!” XX

Hello,

Just to let everyone know that Roger had his operation this afternoon and came out at 6pm.  The Staff Nurse said he was comfortable but still sleepy from the effects of the anaesthetic.  I will leave him in peace tonight and go up tomorrow.

Roger was thrilled to find he has Internet access from his hospital bed and intends to update his Blog as soon as he’s back on the Ward, he’s obviously never heard of ‘Rest & Recuperation’.  He’s already got a few ‘stories’ to tell you from when he arrived yesterday.

He has asked me to say a BIG thank you to everyone who’s posted messages to him on the Blog, it really cheered him up (don’t stop!).

I too would also like to say a big thank you to everyone for your well wishes and support.

Karan

This is getting very silly.  The Doctor finally arrived last night at 11.30pm.  At 12.30am she returned to insert a (very painful) cannula.  She took bloods and left. (BTW she was very nice and no problem).

At 1.30am they woke me for an X-ray.  I told them that I had recently had X-rays; a CT scan and most importantly an MRI scan specifically of the liver in anticipation of this.  They did not have them, hence the X-ray.

I was surprised when a nurse came round to take observations (obs) and told me they had still not found my notes, lost about 7pm, 2 hours after admission.  They still hadn’t found them at 7am, 12 hours later.

Then, for me, the biggy.  The doctor, who had originally taken bloods last night, came round at 7.30am to take more bloods.  I asked if there was a problem with them.  "No" she said, "They’ve lost them".  By this time, my confidence is through the floor.  I am seriously considering discharging myself.  If I do, I die in 4-16 months.  If I don’t, then I am putting myself in the hands of a system that can’t keep control of a piece of paper, my obs, and my bloods.

The Doctor returned after 20 minutes and said she had traced them in one lab, but the other lab wasn’t answering.  I had a long talk with the Doctor and felt a little better.  Then I saw the Anaesthetist, who did reassure me a bit more with the pain relief.  Finally, Sister (Suzanne) came and had a chat.  Okay, I am going ahead with it.

I do not believe this!  The second lab has lost my bloods.  I have had to have them done again.

It is good to have some nice nurses about, but it still amazes me how quickly and how easily things can go wrong.

I arrived at 5pm and after a bite to eat an auxiliary nurse started my admission registration.  At 9pm the doctors were supposed to arrive.  It’s 10pm and I am still not registered in.  They have lost my papers!  I’m not being picky but so far every time I have been in hospital they have lost my records.  My medication to relieve anxiety has started to wear off and I’m getting quite nervous again.

Unfortunately, the nurse says that the doctor cannot prescribe because I’m not on the computer yet!  I brought my own tablets to take but I’m not allowed to because they need to be prescribed by the doctor whilst I am under their care.  I pointed out that strictly speaking I’m not under their care yet.  I’m not on the computer, I haven’t been formally admitted and I haven’t seen a doctor yet!  So, if I take my tablet, what will happen?  Will they pump my stomach?  "What is it?" she asked.  I showed her and she said "okay".  It doesn’t give much confidence in the system though does it? 

God these places are so depressing.

On a lighter note, a massive big thanks to all you people who have left me comments.  Brilliant!  You can’t imagine how much it matters and makes a difference.

Well I finally got conformation this morning that there’s a bed for me later today.  My operation is scheduled for tomorrow.

I’m terrified but need to get it over with.

Pray for me please.

It was nice to see the MacMillan nurse, Diane again this morning.  Even if it was a 8am!

Not a lot to report although it was suggested that I put down in writing the issues I had with the after care last time and seek assurance that everybody would try to avoid a repeat.  I’m not convinced.  When I mentioned the issues verbally to the surgeon last time we met, he said he couldn’t guarantee it wouldn’t happen again. Great bedside manner!

I am getting quite anxious now so I think it’s about time I had some tablets to help me over the next few days.  I don’t like that approach, but if you have a broken leg, you need a cast on it for a while…

I’ve got a workshop to deliver for a client tomorrow in Stockport.  It’s a job I enjoy for a client I like, so I hope I can lose myself in that.

Accepting all the forthcoming surgery and recovery would have been a lot easier if I actually felt ill.  It is hard to accept that I am choosing to submit myself to all the invasive procedures and the pain that follows.  If I were in pain or felt sick, couldn’t walk, had difficulty breathing or anything else that you associate with being ill, then I could look forward to the relief from those symptoms.  But with nothing to look forward to, I find it difficult to justify what I am doing.

I am risking my life to save my life.  I am undertaking pain to stop pain that hasn’t manifested itself yet.  I am going to be made to feel physically sick in order that I don’t feel sick at some time in the future.

Weird.