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.

The photo to the left is Jock Dog - Jock Doggy Dogthing Dog to give him his full name actually. W and I got him January 1995. We'd moved up to Edinburgh the summer before, which should have been a big enough commitment for me; but no, for some reason I can't remember now, we needed a DOG to go with our new improved quality of life up north.

So we got Jock.

He came from an animal rescue shelter. We went in looking for a puppy, not necessarily a full breed - because come on, this is a rescued animal, and besides the best dog I'd ever had growing up was a mongrel anyways. Anyhoots, they showed us two tiny wee things, one of which obviously loved us, so we adopted him. All we knew about him was that he was male, "about 3 months old" and had been found abandoned.
Ahh cuteness. We had to name him there and then, and because an italian friend who was staying with us suggested it was lucky to give a dog a name starting with the same letter as the month he was born in, he was Jock.

So we took him all the way back to Edinburgh, and his tail never stopped wagging for the whole of the first day as we showed him our freezing cold flat, the local park, and our local pub.
And because the flat we were staying in was perishing (try getting through an Edinburgh winter with NO CENTRAL HEATING), he got to sleep in our bed - well it was only fair seeing's how we were sleeping in our clothes to keep warm anyways!
And because he was such a cute wee thing, and too young to train, he got away with murder..chewing his way through my walking boots, and W's trainers, joining us on the sofa for SNACKS, getting carried up the last flights of stairs to the flat...

And then I took him to the vets for his first immunisations.
And the vet said...."OK.... hmmm... uh huh How old did you say he was?"
"Three months"
"Oh no, I don't think so. Look at those teeth. They're all adult teeth grown in."
"......"
"Oh no, I'd say he's more like a year".

Yep. Jock dog has remained a puppy sized muppet all his life.

But wait, that's not the punch line.

All the time W and I were together we had a running joke, that he wanted a real dog, but oh no we got THIS one. He used to say that when we split up we would have a custody battle over the dog - as in "you take him...no you take him"

And yet when he moved out one of the first things he said was that he would take Jock.

Who'd have thought it? And hey now aged at least 15 years old, arthritic, blind, deaf and senile Jock dog's looking in better shape than W these days.

Sorry W, had to be said...

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.

"I grow old I grow old
I shall wear the bottoms of my trousers rolled"

Fine, but I bet J Arthur Prufrock never strolled off for the day leaving his patio windows at the back Wide Open.

Three times in a month.....

And yesterday when it rained all afternoon.......

Cheesetown stinks right now. With the harvest in, the fields have been dressed... what they have been dressed in, I don't know. But it smells like something that flooded out the back end of ruminants last month.....
There is no escape. Fields at the end of the airport have been done, fields at top end of village covered, fields on the Dalmeny estate ditto.
My only hope is to walk Ned up to the M9 barrier where we can inhale lovely car fumes for a change.

I am in the spare bedroom having a discussion with Ned about the state of the bed . He knows he's not allowed on the furniture, but our spare bed has mud on the duvet cover and keeps sprouting old dog toys under the pillows.

The Cherub interrupts "You talking me or our pets again?"

"Ned! .....And pets???? Ned's the only pet we have right now"

"Yeah, well Ned's got fleas - so I reckon we have pets"

"Pffftt Ned's had two flea shampoos, got frontline lotion AND we fleabombed the house. Remember???"

"LOL. Ned and his IMMORTAL fleas"

It's a bit like planning a surprise party really - umm except it's a funeral...

(And yes, yes , yes, I know what you're thinking - NO Macy, don't go there!!! There are some subjects which are NOT SUITABLE FOR BLOGGING. Well tough. I've used the "F" word already, so bear with me or return later)

So as I was saying, it's a bit like planning a surprise party, except there are two very key differences.
1. Party boy does know that the planning is ongoing (yes W is still with us, but Nurse Linda and I like to PLAN THINGS).
2. We do have to allow that the guest of honour is unlikely to see the great event itself - though of course you never can tell...

Anyhoots, like many good ideas, it all started with a discussion of money. And went from there to value for money... and the more I thought about it, the more stupid a conventional funeral seemed. W has worn only one suit in his entire life - this was bought from a thrift shop for a wedding, and was worn as a joke. It doesn't seem right, therefore, that he now be carried off by four hired men in suits.
Also W has never done anything by the book, has never subscribed to any religion, and it seems right that his funeral be about HIM. He has a lot of friends who are going to want to see the job done right.

Current planning is, therefore, a woodside burial, cardboard coffin, transport in Sparkle's people carrier and a ceilidh afterward. His fellow beer drinker for the past 20 years, El Rocky, will give the address.
Sorted.

It's now my job to check which details party boy wants to approve beforehand - is he happy with a carboard box? Would he want us to draw on it? Would he like a wake? Is there anyone he wants BARRED?

So many details, so little time...

Macy : "Hi. Just bringing back the Nigel Slater.. and do you have the Natural Death Handbook?"

Librarian :" Oh I love Nigel too... lovely recipes. The Natural...?? have you had a look at the Health and Living section?"

Macy "Mmmm.. couldn't find it"

Librarian [going on computer] OK let's have a look. The Natural Deaf ... what was it?

Macy: "The natural DEATH"
Librarian: "The Natural Death??
Macy: Uh huh
Librarian: "The... Natural...Death... handbook was it?"
Macy: "Yes - the handbook"
Librarian: Oh... oh look, they've got one down at central.... will I reserve it for you?"
Macy: "Could you please? And when's it likely to arrive?"

Librarian "Oh.. are you needing it in a hurry??"

Macy: "No, no, we're probably OK for another couple of weeks yet."

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"

Being realistic and all, redundancy did come at a good time - what with me (a) not liking the job, the boss, the company, or the whole financial services industry and (b) wanting time to spend a LOT more time with W and Cherub over the next month or two.

Plan A was, therefore, to unwind, live FRUGALLY, help W out for however long we have, and generally wait for the recession to end sometime next Spring.

Because they'll need to know where to find me next Spring, I sent my CV out to a couple of recruitment agencies, specifying job type and location, and making clear I HAVE NO INTEREST WHATSOEVER IN COLLECTIVE INVESTMENT VEHICLES OF ANY KIND.

None.

Nopey.

No way.

Not playing.

Guess what?

Salaries in the financial services industry have Got Better in the past couple of years. I am having job specs run past me where the money is extremely good...b*gg@r. I am also being reminded that my CV suits only the FS.

Plan A - or Plan B; Frugality or Flash! Double glazing AND a decent holiday over Christmas for the Cherub??

Suppose these are the last jobs going ..... ? Suppose I can never find work outside the FS????

"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.

W has gone back to his own flat. He needed to simply because he cannot manage the stairs in my house. Also because he needs some peace within his own space in the time that he has left.

Last night he was getting no peace though. Excluding himself there were eleven adults crammed into his living room and seven kids bouncing off the walls.

We had all been called to a meeting by Nurse Linda (who is certainly exhibiting Management Skills these days). W's biggest problem right now seems to be that he has more volunteer helpers than he has jobs for them to do. Everyone desperately wants to be able to do something. A rota will stop a traffic jam at his door.

For the next two weeks, therefore, we have identified dog walkers, cooks, cleaners, taxi drivers, and odd job men. Whilst other specialists, such as myself, will practice their general chat-and hanging-around-in-the-morning skills.

W of course is feeling in need of less help rather than more, but as Nurse Linda put it "It's a case of him helping us; we have to do something".

A request from W this morning, can I get Alice a birthday card? It's her 50th.
A birthday card for Alice...
Some back history is needed here. Alice was the girlfriend before me. Alice had a kid with W while he was living with me. Without meeting her mind you, I have always hated the idea of Alice. The only good thing about Alice is that she lives a couple of hundred miles away.

Get a birthday card for her???

I never got a birthday card for MY birthday!!

Still not clear if this experiment is working. But then a weekly listing of things to be grateful for in the belief that it could increase levels of happiness and stamina can't hurt - can it?

So, this week in no particular order we have:-

1. There were TWO money off vouchers inside Ned's dog food, not one... £1 sterling, instead of the ten shillings promised.. HA!
2. We live in an area of outstanding natural beauty which also happens to be very conveniently located near a Poundland. Entirely possible that there is no better shop yet. Everything's a pound! DUR. Check out the bangles - Missoni inspired and £1 for three, yes not £1 each, but £1 for all three of them. Read it and weep oh ye outside of Cheesetown.
3. I have a voicemail from a recruitment consultant who wants to talk to me. It's entirely possible I won't phone at all, but just listen to the message "Macy, I'm extremely interested in your CV..." endlessly...
4. Being redundant means ever getting that Monday morning feeling.
   
5. The sun is out over Lothian. Repeat THE SUN IS OUT.

Yes really - never let it be said I never get round to the Big Subjects...

I have a friend, let's call her Sparkle. Sparkle has also been through a couple of Hard Times, three kids, and a husband confined to a wheelchair for the past couple of years. Sparkle tells me she has found much solace in prayer. She can see it was absolutely predestined that I should move back from Glasgow to be with W at this time. It can't be just coincidence that W, Cherub and I should be reunited.

I have refrained from pointing out that in order for this happy reunion to take place, W should die, the Cherub lose his father, and I break up with the Dybbuk.
AND in order for W to die at home, it seems that both Nurse Linda and I need to be made redundant first.

Not wanting to rain on God's big plan or anything, but any fule can see a winning lottery ticket would have been easier all round...

And so the "bounce" (cf. Nurse June) continues...W's recovery is currently bouncing off the charts, and he is all set and ready to come home again. On Monday Dr K broke the news to Linda and me that with proper medical care it was not impossible that he could last for months. Months??? as of last Sunday we were thinking in terms of days. Two beaming faces was obviously not what Dr K was expecting on breaking her news. She warned us that Christmas "could be problematic". Christmas!! Jeez we didn't think we'd be discussing Hallowe'en!

Dr K accepted she was dealing with a couple of smiling idiots, and continued to outline what was going to be needed in the immediate future: viz Monday, Wednesday and Friday drugs will be dropped off for W. Every morning a district nurse will attend to change the intrathecal which is currently pumping class A drugs into his spine; and every Tuesday W will return to the hospice for a check up and to get the intrathecal pump cleaned.

Simples.
W is ready to return.

Except that he can't. Because the district nurses can't cope with changing the intrathecal. This is outside their current field of expertise. They will need training.
No, we don't know how soon training can be completed. So, you know, we are back to W being stuck in limbo in the hospice again.

Luckily for W, Nurse Linda was a staff nurse in her past life. She ran teams of nurses. She's not letting some lily-livered district nurses dictate where and when W can be treated. She has experience of intrathecals already; apparantly it's not rocket science. Two other friends of ours also have nurse training. Drawing on their nursing backgrounds, and my own incredibly useful accountancy training( ...) she has pulled together an alternative nursing corps. We will all receive training on intrathecals from the hospice and care for W until such time as the district nurses can catch up with us!

Ha!

Nurse Macy...obviously the junior nurse in such robust company but just watch me learn to wield the needles!

Behold the classic 2002 Mazda MX5! To quote Jeremy Clarkson it's "the ultimate driving experience". Get the specs on this

• 1,839 cc 1.8 liters 4 in-line front engine with 83 mm bore, 85 mm stroke, 10 compression ratio, double overhead cam, variable valve timing/camshaft and four valves per cylinder
• Multi-point injection fuel system
• 142 HP @ 7,000 rpm; 125 ft lb , 170 Nm @ 5,000 rpm
• Wishbone front and rear suspension with stabilizer bar independent with coil springs
• Coefficient of drag: 0.38
• Leather covered steering wheel
• Wind deflector behind seats

In other words it goes fast and is a blast to drive.

BUT

As a two seater, it can just about hold myself, cherub and Ned. What it cannot do is

• Accomodate cherub + one other pal
• Accomodate two dogs
• Allow easy access and exit for anyone with stage 4 bone cancer. To do this, you need to take the roof down and sort of drop them into the seat.

Memo to self, get job, get new car.

So on Sunday when I was sat down and talked through some very likely, and very bad outcomes, the one bit of hope offerred from June the hospice nurse was that "sometimes the young can bounce back for a wee while".

And we do indeed have a bounce...

After a night in quarantine, a battery of tests, and samples taken to check for c-difficile or other complications, it's..well it's as if someone has switched on the lights again.

The cherub and I got to the hospice last night to find W sitting up in bed bantering with the nurse. Since lunchtime he'd had two visitors, been texting and receiving calls, been out of bed, albeit attached to a drip, and when we arrived was joking about the pipe band music wafting down the corridor.

He has no memory at all of Sunday, tremors, stomach upsets, semi consciousness and my trying to wake him. Being manhandled downstairs and into my car never happened.

As of today he is free to leave the hospice on day release again. So here we are - back where we started Friday night.

We're not on a "journey", we're on a bl**dy roundabout.