You see getting online again is like the first day back at school! Just catching up with all the old faces you haven't seen for ages!
I'm doing the rounds, and catching up on the gossip - and then it's .. well it's bad news. The best science teacher ever isn't coming back.

Kaz is gone.

And I'm really upset about this.
Kaz was one of the first blogs I ever read - way back, way way back in 2005, before I even had a gmail account, never mind a blogger account, I used to check her blog daily.
Because she was funny
And she had attitude
She was brilliant.
She was a superstar.

And she died last month. Her blog was updated yesterday with the news. And all day long I've been thinking of her. Because that's what really great bloggers can do. They entertain, and inform, and eventually, they touch you.

And no. There's no punchline when a friend dies.
Unless of course her spam friend chooses to comment here. We might run to black irony today....

Some headlines I have to discuss with the cherub. Like this one

As, I pointed out to Cherub, it wouldn't have made a blind bit of difference to W. His cancer was a rare angiosarcoma, and although it affected his lungs it was incurable.

Also, maybe because we are in Scotland where everything is better (sorry, sarcasm...), or maybe because W was diagnosed at a quiet time for oncologists??.... well whatever, there were no delays I could see in his initial diagnosis.
Scans had followed the X rays which in turn had followed his GP visits so quickly that at the time I kept thinking all this for a false alarm. Ha! Hindsight!
The only delay was in diagnosing the tumour cells they removed from his lung. Which is fair enough when you look at how rare this sarcoma is, and what the diagnosis would mean...

Nope. From a very very small field sample of one, which I know doesn't make me a subject matter expert by a long chalk, the problem in W's treatment wasn't any delay in diagnosis. It was, and this I don't discuss with the Cherub, an apparent inability to treat the pain. As I think I've mentioned already. Endlessly.
Whether we need new drugs, better drugs, drugs that allow the patient to think coherently or remain mobile whilst under treatment; or whether W's doctors needed to improve their game plan sooner, I don't know.

But then there are no punchy headlines to be had in "Cancer patients suffer pain..." DUR

And probably good reasons for not making the news too public if you're trying to encourage the public to come forward for earlier diagnosis...

W died at 10:20pm on the 20th of the 10th.


Which is incredibly tidy for W.

My house has been sporadically filled with people, care assistants, friends to see W, the hospice doctor, W's GP, my friends, neighbours, district nurses (yes, they always travel in pairs...). Last night, for the first time I met the Church of Scotland Minister..... They want to care for, talk to, assess, pray for, administer to. Oh I don't know, for all I know they might just be here for the TEA and SHERRY.
W continues to breathe heavily and raspily through an oxygen mask. Sometimes he moans.

All the time, in the background, upstairs, or in the living room there has been The Cherub. The kid is 13 for heavens sake, and his daddy is dying.

He's been so good there in the background. Life continues to give this kid No Breaks. Typically for Cherub, at a time when he would be Let Off School, school is on half term break. So he doesn't even get bonus holidays.
Luckily the hospice sent out its best doctor, Dr K, to visit us. Dr K made sure that the Cherub understood that his daddy would be in no pain as he was under a lot of drugs which would make sure he would never wake up. The noises that we would hear were normal and didn't mean that W was in distress.
Dr K stressed to the Cherub that if he found it frightening or upsetting at all, he could let us know, and his daddy would go back to the hospice instead of staying here at home.
The Cherub was reassured that his dad would be having well freaky dreams, but could definitely still hear anyone talking to him.
Without wanting to sound too much like a New Age hippy here, I've made sure the Cherub got Priority Access through to his dad's room, where he has returned a couple of times now to spend some time with his dad talking and just holding his hand. I was re-assured last night when he told me he'd found it comforting being with him.

Apparently W has squeezed the cherub's hand in return.

Urm, title says it all I think. We've had a long night what with needing to call out district nurses three times in one night, get oxygen into the house, and Administer some Big Bang Drugs.

Currently W is semi conscious. The daytime nurses are here to insert a catheter, clear his throat, and monitor his breathing. Nurse Linda is fielding phone calls and updating the GP....And me? I am continuing to believe that a cure for cancer is approx 4 hours away; either that or W will have a miraculous recovery as we find he was misdiagnosed....Big Mistake..what do you know antibiotics will work after all.

Well everyone does what they can. And frankly without a cure or re-diagnosis I'm resigned to never hearing W speak again.

On Thursday W was discharged from the hospice. He's changed his stated preference of place of death from hospice to "home"; by which we mean my home in Cheesetown.

Suddenly there are A LOT of parallels with the film "Truly Madly Deeply" (and apologies for anyone who hasn't seen it, but bear with me anyway). The downside of the return of the "dead" hero to our heroine's flat entails a lot of re-arranging of furniture, rooms crowded with HIS friends, watching of HIS videos and old arguments. All to pretty good comic effect.

With the film being made in the 1980's of course, what it doesn't show is the effect on HER blogging habit.

So, sigh, Desk re-set up in living room....check
PC re-connected to internet...check
Patient sleeping, breathing and in no pain...check
10 minutes before morning drugs needed....check
Dogs walked and fed....check
No visitors, nurses, drug deliveries expected...check

OK BLOG.

Hello NHS 24. Can I have your name please?
Hi. This is Macy M...I'm phoning on behalf of W McH..he has terminal cancer of bone and lung, is in terrible pain, and we need someone to prescribe 150mg of diamorphine as soon as possible please.
I see. Can you give me W's full name?
W..R...McH
And his address?
xxxxx Queensferry, EH30 xxx but he's not there he's here at x xxxxx Cheesetown
And his date of birth please?
y July xxmm
Ah yes I'm looking at his records. Can you confirm his doctor?
He's registered at xxxx Queensferry, but his current medication is prescribed by the Marie Curie Hospice at Frogston Road.
Now I have to ask you some questions. Has he been in pain for long?
About 6 months. He's got cancer.
And is the pain worsening?
Yes because we have no DIAMORPHINE. We need 150mg asap
Right. Can I confirm your phone number?
0131 xxx ssss
And can I call you back on this number if we get cut off?
Yes yes yes
I'm going to put you through to the duty nurse. Hold on.
...
.......
....

Hello this is the duty nurse. Can I confirm that I am talking to Macy M....?
Yes.
And your phone no is.....
Yes
Can you confirm that you are calling on behalf of .....
YES BECAUSE HE'S IN TERRIBLE TERRIBLE PAIN AND WE NEED 150mg DIAMORPHINE.
Can you confirm W's date of birth?
xxxxxx
Now I need to ask you some questions.

Where is the pain he's feeling?
It's in his back. Where the bone cancer is.
And how long has he been in pain?
Since the current meds wore off...
And is the pain worsening?
Yes. He's almost crying. Can you please send a doctor?
Does he have difficulty breathing?
Yes. He has lung cancer
Is his breathing worse than normal?
As in normal for a man with one lung?
.....
Has he changed colour?
No
Are there any signs of swelling?
Only hands and feet due to Gabapentin. That's not new. He's had swollen feet since the intrathecal.
Can I talk to W?
Um, I'll see if he's able {W, can you talk?}
W - nnnn...yeah.....yeah...

W has authorised you to speak on his behalf.
OK good. What he's having trouble saying, is we desperately need a doctor please.

Can you confirm if W is taking any medication?
HE'S GOT TERMINAL CANCER!!!! {Deep breath. Settle Macy}. OK. He's on 4 Prednisolone, 1 Omeprazole, 12 paracetemol, 12 Gabapentin, per day. This is in addition to the 45 Diamorphine, 35 Levobupivicain and 15 Clonidine in the intrathecal, and Diclofenac and Medazolam on demand. But he's in desperate pain and needs DIAMORPHINE

Sorry, can you repeat that slowly...Pretis??
....Sigh....Prednisolone...Omeprazole, that's O-M-E-P-R-A-Z-O-L-E

10 minutes later. After a wee spelling bee.

Right. I confirm that you are phoning on behalf of W McH, who has been diagnosed with cancer of lung and bone, he is on the following medication (blah blah blah blah...), despite this he is in some degree of pain. I will request that a doctor be despatched to xxxxxx Cheesetown.

THANK YOU!

I cannot guarantee the time a doctor will be with you. It may be upwards of an hour. If you have any further problems please contact us again.

I know. I know, I know, I know, if anyone phones up a central helpline asking for enough controlled drugs to kill the average human, you would ask questions wouldn't you?

I just hate seeing him in pain.

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.

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"

It started at Maggies Centre this morning. Someone at our Friends and Family group mentioned that they didn't like the term remission....."Remission??? You don't like the word remission??? From where I'm sitting I love the idea of remission! I can only dream of anyone using the word remission around W, because it ain't going to happen. There is no remission, just this bloody awful rush headlong into a wall I can see coming..."

Sigh

Later another rant featured my favourite subject - the District Nurses. "What ARE they good for? I asked Petal. First they can't change an intrathecal until they have two weeks training. Then they can't carry drugs. W is completely dependent on friends who can collect from our pharmacy as needed. They can apparantly only visit the house in twos, and have yet to show one single ounce of initiative if needed. Let me illustrate:-
Intrathecals late in arriving from the hospital? "Yes", they say , "you'll need to find out why".
Incorrect prescription issuedby our GP? "Yes", they say, "you'll need to get a new one"
W is having a suspected heart attack? "Yes", they say, "you'll need to phone a doctor"
Can you see my point here?

My point as to their general uselessness was shown at the hospice today, where in a room of four district nurses being trained in intrathecal changovers (yes, yes, of course training is ongoing....trained district nurses cannot train others. All training must be form the hospice) W needed a backup injection and guess what? No they aren't authorised to do that. In a room of four nurses at the hospice today, I had to administer the drugs.

I kid you not.

So when I met the Doctor at the Hospice today I was in fine form. Key questions were asked

• Since W's cancer is so rare, do you really know how to treat it?
• If you do know how to treat it, why is he in such pain he can't talk for most of the morning....?
• What level of pain do you consider reasonable?

Coming back in the car W checked, "you were civil to them weren't you?"

Yeah, whatever, I got them to agree there is a PROBLEM.

Today's "Reasons to be Cheerful" list is going to be restricted to one HUGE reason to be grateful. Maggies Centres Don't take my word for it, go see the website and see how fantastic and supportive they are. Maggie's : Welcome to Maggie's

9 months ago I'd never heard of them either. It was Nurse Linda who suggested I go in and see what support there was for the cherub and myself. Now at the time W wasn't talking to me. Communication was via short sharp texts only. And since I was the ex partner, I didn't see what the hell I was meant to be doing looking for "support". Anyhoots, feeling like a major Drama Queen, I slunk in under the guise of "looking for support for the cherub".

And they were lovely.
Did anyone say "Um hello... you don't actually have cancer Ms Macy..."
Or "What the hell are you doing being so upset about someone you finished with five years ago?"
Was there anyone on a reception desk sucking her teeth and booking me an appointment for five weeks hence?

Nope. Nope and No.

I was sat down immediately with a lovely counsellor person, who supplied coffee and tissues, and listened, and reassured me it was completely OK to feel as though I'd been dropped down a deep well. Once I'd sniffled my semi-coherrent way through the main points, she got the Cherub enrolled on the next kids open day, and arranged for me to join the weekly friends and family support group.

And because of my meetings with Maggies I've been able to reach out to W, and apologise, and help myself through helping him.

And because of all the support we've both been getting there, we're spending some last quality time along with the Cherub.

And I can't thank them enough

Macy
xx

Nurse Linda has explained her concerns over W's drug intake.

In her day in the acute wards, they would give 5mg of diamorphine to post operatives. So, just to stress it here, if you had a leg amputated, or kidney removed they would inject 5mg. If you had major major pain, (oh I don't know, open heart surgery?) they would give you 10mg.

OK W is getting 150mg of diamorphine - four times a day. Oh plus the intrathecal into his spine.
Nurse Linda is concerned what the top level of drugs actually is. Because she would never in her wildest dreams think of giving anyone this level of diamorphine.

I have related this to W. And told him to stop whinging - how the hell can he be in pain with that level of drugs? Shape up or ship out W!

Love Story's a great film! It was one of my all time favourites as a kid (which maybe tells you more than you need to know about my formative years....) But it's got Everything a teenage girl needs. SHE's so skinny - and her clothes are great. And SHE gets all the good lines. And they overcome Parental Disapproval to MARRY. Gosh. And She Dies Young (and even skinnier!!). When They Have Their Whole Life in Front of Them.... what's not to like??? Pass the hankies.

Chiz, and if you are going to get cancer, this Hollywood cancer has got to be the best one to catch. No chemotherapy, no hair loss, no amputations, no post surgery scars. Not an intrathecal or trachetomy in sight. Ali McGraw never sufferred from constipation and huge farts as the laxatives took hold. I don't see her bloated with steroids, or twitching in a foetal position as the diamorphine wears off.

Not even a death rattle as she faded out of "Preppy's" life, with the commode and mouth swabs tastefully out of sight.

I need to get this film onto my LoveFilm wish list fast. W and I could do with a good laugh.

More and more it feels like I'm abandoning W when I leave him alone in his flat for the night. All I can do is make sure he's settled into his recliner with a DVD in the machine, a phone within reach, water and drugs to hand and old Jock dog in charge on the sofa.
Big hugs are out of the question with terminal 4 bone cancer (it hurts too much), and I'm sticking to some received theory about being upbeat with the patient. No Tears. Ever.
I leave sharpish.

Likewise W also avoids amateur dramatics whenever possible, but he did call out last night as I was leaving:-

"Macy, you've been a been a star as always. Thanks for everything"

"...Yeah, well you know me - I'm only doing this for the KARMA. I'm needing a major karma reversal or something these days"

"Don't worry. Come Easter I'm going to be sending you down all the karma I can"
........

"{deep breath} Yeah? Big Karma? The kind of karma that gets you a good job and everything?"

"The biggest there is"

Thanks toots.

Dear Sirs
Yesterday the Saturday Grauniad gave away a full size copy of the "Jackie Magazine" from Feb 1975! Fantastic! and to think I let my mother throw away three years' worth of this magazine back in the 1980's!
And there I was emoting through the Cathy and Claire problem page, and snickering at the letters to the Editor and the Beauty Doc, when it hit me:

There Is a Gap in the Magazine Market...

Think on it. Back in my teens there was the Jackie. I had years of advice on a weekly basis on how to deal with spots, kiss boys, get dates, and cope with rejection when I had only daydreams of David Cassidy to console me.
Moving on through my late teens and twenties, Cosmo and Marie Claire kept me informed as to how to get the sex life, job, and any man I wanted all through correct Power Dressing.
For weddings there's Scottish Bride, Brides Today, etc etc etc For pregnancy and after there's Practical Parenting, Mum and Baby, Cherubs Today yada yada yada.
For every big life event, I've had years and years of forewarning through nice trashy magazines.

So where's the advice on Death and Palliative Care when you need it? Strikes me there's some great articles and features to be written:-

• Christmas - The Cruelest Month. We look at alternatives to staying home over that first festive season.
• Burial Places - New Ideas from the Natural Death Society
• Funeral Dressing -Can there ever be an alternative to Black?
• Non Resuscitation Orders - Breaking the news to your loved one
• The Drugs Don't Work - Limits to Prozac's effectiveness. Homeopathic alternatives
• Celebrity Report - We look at Farrah Fawcett's last resting place

You want more? I can riff on this for ages. By all means bulk up magazines like Red or Psychologies with articles on palliative care and stress. Add a feature on garden burial to Homes and Gardens. Just do something. Because right now I feel like I'm drifting into uncharted territory.

Thank You

Macy
xx

Sometimes I'm reminded of the old Woody Allen joke ( in Love & Death one of his funny films).

Wife "How long's he got?"

Doctor "Oh with proper medical care and attention, about ten minutes"

"But Macy, does W have a faith? You know I offered up a mass for him last Sunday; and the kids did too...

"You know when you are a believer, you have to think of the moment of death as being one of the most glorious things. I really do believe he's going to be on the trip of a lifetime. There'll be his Maker, and all his loved ones on the other side waiting for him. I'm almost jealous....

"I did actually see my father five days after his death.... I ran past him, and there he was, and he wasn't suffering anymore. He was at peace just wearing the old brown jacket he used to wear...

"We gave him a fantastic funeral, we had all bits of different faiths, and he was cremated with all sorts of things we thought should be in with him, letters, gosh bits of dog hair....all sorts

Seriously. I am having this conversation at the side of Tesco's cold meats section.

But equally seriously I do love Sparkle - I left Tescos almost jealous of W myself.

Here's one way the doctors in hospices measure their patient's likely remaining lifespan .

First they compare the his condition today with his condition last month. Then they compare his condition today with his condition last week. Finally they extrapolate forward to the end of the following month, assuming same rate of change as in last week.

Well it made sense when Dr K explained it.

(For those who want to try doing predictions, last month W was able to travel between Dublin and Edinburgh, today he can't stay awake more than three hours, or walk more than 100 yards slowly. His inability to do stairs started in the past week).

Tempus fugit guys, tempus is certainly fugiting.