I do understand that medical practitioners need to be careful not to be unnecessarily dramatic, I really do. I mean on walking into a doctor's surgery with a bad cough, you don't need to be told immediately "Oh my god, this could be lung cancer! It might have spread through the chest cavity already! Or even be a SECONDARY site! Cheeses! Get the CAT scan! Alert Oncologists and palliative team! Who is your next of kin??

Yep. Because that would be alarmist.

And I mean likewise, when they need to open you up to remove any tumour, and then, em don't. Well there's no point admitting that this is conclusively bad news. Better you tell the relatives "We need to wait on the biopsy", than admitting "Christ on a bike! the tumour's HUGE. You're going to need as much strength as possible for the chemo! And even then there's no hope"

And even if your consultant does find that a rare form of cancer has arisen in the lining of your blood vessesls, affecting soft tissues throughout your bones and chest cavity, the news is still tempered. Oh yes, they say it can be treated. Yep, as Nurse Linda pointed out to us later, treated, not cured..

Tumours will be treated aggressively with chemotherapy: tumours in the lung they mean. They can't do that with the ones in the bone.

Pain relief can be given. We get an intrathecal - this will cure pain. And we were told that "some people can experience some loss of mobility". Some people... not "you will loose all sensation in your legs, crash to floor and need to be hoisted"

Having had enough of the softly softly gradual disclosure approach, Nurse Linda and I did ask point blank as to how W will die of this cancer and had an almost beautiful death described. W will float out of life, having become more and more fatigued. You know, I really did have a picture of Millais' Ophelia! HA!

Yeah right. Last week W's consultant, who obviously hasn't been advised of the tiptoe around the bad news approach, asked him how he would cope with the loss of mobility. Understandably, this got W really scared; and we were scared, and at this point I tried to make it as clear as possible to the hospice that, stuff the gradual-disclosure-on-a-need-to-know basis, we really need to know the worst now.

So a meeting was called with the palliative care team, and a list of questions sent in advance, including "what does loss of mobility mean?", and "what did the scan show?"

Nurse Linda and I left a meeting with the palliative care team shaken, but reassured.

In an old person they said, they would guess that W had a couple of weeks, but with young, otherwise strong people the route of the disease is less certain. W has had major rallies already. And you know there is no clot on his lung. Oh yes, the scan showed some spread of the disease, but entirely as to be expected. For the tumour on his lung, Midazalan will ease the breathing, and he will be in no fear, pain or panic. No he won't need oxygen.

Um....Yes, OK, he will become immobile, and yes we are close to that point, but again, the fatigue will mean that he doesn't resent or even notice this.

Hurrah!

Yeah, well it looks like every carer needs an informant. So big thanks to Steve who phoned on Sunday. W has been having bad nights (nobody at the meeting told us about these! He can't remember when he comes round), oxygen has been administered, Steve is worried how we will cope with this at home. Especially as W is now functioning on what's left of one lung.

One damaged lung?? Nobody told us about one damaged lung. And the pooling....

And this Midazalan? it takes awhile to kick in. So yes he is having very bad nights indeed.

And I'm pretty sure we have not been fully informed.

So the scan showed no clot on W's lung - it's just continued deterioration of lung and chest cavity...Okaa-a-ay someone somewhere will know if this is good or bad news. All I know is that ordinarily no one would hear they had deterioration of lung and chest cavity and go "Yippee!" So, you know, we'll just move along for now.

And on Thursday, God did his best to make amends. The sun was splitting through a clear blue sky and Sparkle has arranged a day out at the beach. As well as collecting W plus wheelchair from the hospice she has laid on sticky toffee cake, and cucumber sandwiches - with no crusts. Because, bless her, Sparkle really can do posh.
We have three dogs, a picnic, a deserted beach on the edge of Dalmeny estate and three ostensible adults pretending they are on an Enid Blyton field trip.

On Friday I have a meeting with W's palliative care team, doctors, OT, pharmacists and social workers; it won't be fun. So I'm enjoying the sun while it lasts.

Yesterday I got a text from W
"Going 4 ct scan 2mw at royal. Im scared - give my love 2 cherub and 2 yrself. xx"

W's scared???
Last time W was scared he was being washed out on a rip tide in Thailand 1990.

CT scan is because they believe there is a clot in his lung. The night before the (healthier looking) 70 year old in the next bed died due to breathing difficulties.

Now we're all scared.

I hate hospices.

Since last Wednesday W has been back in the hospice. The idea being that under close supervision they can ratchet the pain control up to the max, then bring it down to try and even out the side effects like, er an inability to walk or think clearly.

Weekends, though there are no doctors to experiment further with pain relief, so given my new expertise in administering drugs intravenously and otherwise, there's now reason why W can't get a 24 hour pass out the hospice to have a Saturday night out in Cheesetown... yay we are stoked! We like Saturday nights, and we have loads of stuff we need to cram into the one night.

Man wants a roast dinner. ..As a recovering vegetarian I've never done a roast in my life, however I will throw myself on the mercy of the butcher at Morrisons, who explains how it all works, and where the ready made yorkshire puddings are. My roast is brilliant - I know, I know, but don't take my word for it, ask W or the dogs....

Getting carried away now, I've also done a peach and almond crumble. It's brill, with double cream and everything.

We have the closing episodes of The Wire series one to get through. This is crucial because, as every fule kno, series 4 is the best, so we need to get working through all the episodes before that. Tonight's episodes are cracking stuff - the wipe out of Wallace and arrest of D'Angelo.

Other Saturday night attractions include:-

• Aloe Vera heat lotion for back massages
• Cherub on hand to display latest x box game
  
• Plenty TEA and BISCUITS for chats into the wee small hours

See, it's not exactly furthest edges of rock and roll or anything, but we can do good times now and again in Cheesetown.

And if party boy can't last all the way through, but needs rushed back to the hospice on Sunday, at least Saturday night was a break.

So having convinced the hospice that W's pain really does need sorting out, it was arranged that
he would be re-admitted to the hospice later in the week.
W is ahead of the game though. Yesterday morning saw him translucent, shaking and in more pain that ever before. He had finished his 24 hour allotment of diamorphine in 12 hours. A series of calls to the hospice, and our excellent GP meant that he was re-admitted to the hospice with immediate effect.

The trouble is W doesn't want to go to the hospice; since getting his intrathecal he has the notion that his next re-admission will be his last one. He's in no rush to get to the hospice thanks.
I have the opposite notion. With him folded into the front seat of the Mazda, I'm breaking all speed limits to get him to the hospice before the painkillers wear off completely; before he does that scary shaking and hallucinating thing.

W is insistent that there is no rush to get to the hospice. He says we should be slowing down to listen better to the CD he's started playing.

I'm arguing that you can't slow down to listen to Bruce Springsteen - dammit, we're "...Sprung from cages out on highway 9, Chrome wheeled, fuel injected and steppin out over the line..
woooahh
..tramps like us, baby we were born to ru-u-un..."

I can't do Bruce at speeds appropriate to road conditions...
And anyhoots, why the sudden liking for Bruce Springsteen now? He always hated him.

No, there's one good song Bruce did, but he can't remember what it was...

So we slow down on the way to the hospice, and W put on Darkness on the Edge of Town, and for some reason, even at sedate speeds, it worked to lift the mood. Because Bruce is cheese. Pure cheese and ham sliced thick.

Three hours later though, when I got back to the car to go home alone, it was just Bruce and me....and it's not funny, it's not funny at all howling your eyes out to a song as tacky as "Badlands"