Discharge 2.0

I'm being discharged tomorrow. It feels as though this will be an actual, permanent discharge. It involves an incredible number of people. I will need to keep my vacuum dressing on for probably a fortnight and have a continuous infusion of antibiotics. This means I'll be carrying around a noisy bag and something that looks like a soda stream bottle constantly.

I have mixed feelings about being discharged. I've never left hospital before being so debilitated. I'm seriously weak, my arms and legs look very scrawny. I am actually not fully capable of looking after myself.

The wound change involved serious narcotics, anti-emetics and lots of wincing. It went well, and I didn't have the same pain I normally get after the procedure. It was quite stressful though as a number of staff were involved and I was being grilled on discharge plans. Once they finished I had another anti-emetic which started my head spinning so I wisely decided to have a nap.

By the time I woke, had three hours of antibiotics, plus thirty minutes of a new antibiotic it was too late to be discharged.

I'll leave tomorrow. The first thing I'll do is go and see the surgeon in clinic!

Scared

The medical team decided to pass me by today because I was in the toilet. I thought that they were going to do my wound change with all the relevant drugs... Instead the nurse is about to do my first non theatre wound change. If it goes well (I don't scream the place down) then I will be sent home this afternoon.

Apparently district nurses will come at 10am and 10pm daily to administer antibiotics, then return three hours later to switch them off.

Inching closer...

I can taste discharge. It feels tantalisingly near.

Back to theatre today for my last wound dressing under anaesthetic. The most boring place in the world must be the inpatient holding area for theatre - a group of narrow bays, only slightly larger than the bed itself, with just enough space for a nurse to stand and ask you the same questions you've been asked five times before. Theatre staff love order and protocol. It is a good thing. But it is still a little frustrating repeating yourself. The omnipresent hospital curtains block you from at least looking out into the hallway.  On the wall, for entertainment, there is a laminated (so wipe-clean) picture of two baby black bears. 

Today theatre was fun because everyone I encountered I'd met before. It got rather jolly. I went under cracking jokes. There wasn't even time for them to give me the standard 'think of your happy place' talk.

After waking it was PICC line time.  This went to take the rest of the afternoon.  It wasn't so much technically difficult as dependent on other people and services to be available.  Unlike the first time I had a line inserted there was no assistant for the nurse.  This makes working in a sterile field challenging.  So she was forced to ask whoever was nearby for help.  An X-Ray is required to validate the position, this must be signed off by a anaesthetist - all of whom were in theatre.  There was an hour delay - and then no one could agree on if the line was in the right place.  They decided to make it 2cm shorter, then X-Ray again.  After five hours in recovery I finally made it back to my room.  Dinner had long passed and I was starving.  I think this is a good sign, as I haven't felt hungry in a while.  It took awhile to find food suitable for my current diet, I was though very glad for my banana, yoghurt and egg sandwich!

------
Saturday
There has been a lot of back and forth over weekend leave, discharge, the last minute requirement to have two weeks of IV Vancymycin and my wound vacuum arrangement.  I was supposed to have most of Saturday and Sunday at home, until it dawned on the nurses that it takes 3.5 hours to infuse the antibiotic.  For some reason, my day nurse started today's dose at 10am so it was well after lunch before I got home for a few hours.  I have to go back this evening for a further dose so will sleep over.  To be frank, I'm much weaker than I thought.  All I feel like doing is sleeping, but I miss the kids so much that I don't really want to do that.

The current plan is that the surgical team will now try and change my wound dressing on the ward on Monday.  They will get out the big gun pain relievers (morphine and fentanyl) in case there is a problem.  If they can change it without me being in too much pain then I will be discharged and the district nurse will do future changes.  I will have to come back to clinic appointments to review the wound.

It actually sounds like the next stage will be quite challenging: I'm so weak.  Going to appointments will be hard work.

Much like a typical NZ test innings.....

this will be short and lacking in intent.


Well well. Who'd have thunk it, huh?

She's well enough now to do her own updating herself, but I thought I'd chip in with some updates from the Outside. I've got to warn you though - don't get too excited, because although you might be expecting some substance to tonight's entry, I'll only provide a couple of flourishes to remind you what I'm capable of before I come to a tame, premature end.

Much like the innings of a NZ middle-order batsman.

(that was one of them)

The biggest news of course is the long-anticipated departure of Nana, a mere 2 1/2 weeks after she was expecting to leave. You know who to blame for that. The younglings have taken it in their stride (the littlest has tiny wee bouncing strides). What I'm really looking forward to is seeing how I cope with solo parenting over the next while. Tonight's dishes and laundry are done. Laundry on the rack. Off work again tomorrow.

As you may already have read there is much doubt over what's going to happen over the next few days. There could be an early discharge with heavy District Nurse input into wound/dressing care. There is talk of a 2-week course of IV antibiotics (vancomycin) which would again require DN visits (and another PICC line). And then there's my cycle holiday around Peru starting next week. I'm planning to tell her in the most sympathetic way possible.

Most interesting of all is the possibility that I might get to observe tomorrow's vacuum dressing change in theatre, so I know what to do if the DN runs into difficulty when she's home. Of course since she's on the acute list it might not happen until I'm not free, but I relish the chance to stand in the background in theatre, telling the Surgeons how I'd do it differently (and in a more generalised, holistic manner).

My dad is settling into his role. He says his ankle can go floppy. I told him to see his GP. Who was my GP from as far back as I remember. He must be 94 or something by now. And the land that the surgery's on must be worth a mint.

The bathroom is working out nicely, thank you.

#1 Husband

The low residue diet.

They gave me soy milk for breakfast and I couldn't work out why. It is part of the fun new diet I'm on as I heal. I appealed to the dietician and got milk restored.

I might be able to go home this weekend. I know I say this every weekend but this time people feel good about it. My blood results are looking really good and the last wee bit of wound on my stomach is showing excellent signs of healing. I kept down the food I was given yesterday and my bowel started working again. I spent much of the night in the toilet. It takes awhile for things to 'thicken up.'

I'm off to theatre tomorrow to have the wound cleaned out again. Everyone seems hopeful that the wound is getting better. Some infectious disease docs came today to evaluate if more specialised antibiotics are required. It was a lengthy and at times confusing consultation. I'll let the surgeons tell me what the outcome is tomorrow!

Hey, how about a longer stay?

Well yesterday was an unpleasant meltdown. I raged about being back in hospital. My behaviour was very negative:  I tried sleeping away the world, and finally I hid (found a meeting room). There was a lot of indulgent crying and finally I just got very stressed about the number of people in the room with me. It really felt as though the walls were closing in. I was also super weak. On one short walk with Mum I had to be wheelchaired back to the room. In the end I asked for a quieter room, a double or single. The four bedded was frazzling me. The shift coordinator took pity on me and before I knew it I was in a single room. A few deep breaths later, and more visitors and I felt normal again.

Thank you to everyone who visited, texted, wrote FB messages or otherwise helped me and my family yesterday. It was a low day and it all really, really helped.

(Slightly ashamed of yesterday's one woman pity party).

Last night I went back to theatre to have the right wound cleaned. This is the wound where the stoma was. Given that the stoma failed, it is no surprise that a lot of mean bacteria took root. There was a lot of pus under the skin, but thankfully not eating into the stomach wall. I have a vacuum dressing on the site now, this will remain until the weekend. It will need changing in three or four days so I will probably be in hospital until the weekend.

The other issue is eating. I haven't been holding down food. The bowel just declines to accept it, resulting in severe nausea and vomiting. The theory is that when the infection is under control the bowel will happily process food.  Tonight's dinner stayed down. Finger's crossed.

Morning update

It is all very familiar. I've been admitted back to the same ward, sadly in a four bedroom side ward. 

I had a CT last night which was kind of thrilling. I was kidnapped! An orderly turned up 30 minutes early to take me. I said to him that we were waiting to have a line put in my arm. My nurse also called over to tell him to wait. He ignored both of us. I got taken down to CT. However CT needs a working line in your arm, as well as consent. Since my veins have proved troubling, this is no small matter. The house surgeon had previously not managed to get a line situated; this time she got it on the second go: she did a happy dance!

The CT showed a rather annoyed bowel, called an ilieus. There isn't an obvious cause for this though. The theory is that there is a small wound infection on my right, this could be annoying the bowel. 

So.....back to theatre for more wound cleansing and another vacuum dressing. They will also test my ability to hold down food via my NG tube. So, another few days here.

Have kind of reached wits end now. It takes a fair amount of bravery each time I have to have anaesthesia and I really hate being in the hospital now. I am so sad for the girls: I told them last Friday I was finished with the hospital. They are both showing signs of having reached their personal limits. The oldest is clingy and the youngest is ill mannered: both not typical behaviours.

Back in paradise

I lasted longer this time, and at least had the weekend at home. But I've struggled with nausea and pain and it turns out that my bowel isn't really processing what I eat terribly well. It could be obstructed, or leaking. I don't know. All I know I'd that I've spent the day in ED and I'm off to the ward now. So lame.

At home.

I'm thrilled with being home. It is very tiring being around the kids though. They have quickly learnt that Mum is going to be lying on the couch and doing nothing. I move between the couch and bed. Today I achieved by including a shower in my couch/bed routine.

It surprises me that just before discharge I was still getting a lot of treatment. In the above photo I have an NG tube in my nose because I couldn't tolerate food. When I felt sick, they would use a large syringe to aspirate my stomach contents. The silver bag is my artificial nutrition - this was great as it gave me strength after a long period of not eating. I'm also receiving saline and my PCA (pain relief button is going). You can't really see but I also have two drains coming out of my wound.

The district nurse came today and removed the drains. For the first time in a month, there is nothing sticking out of me!

I probably had the PIC line pit in too late. My veins gave up receiving lines for fluids so this was the solution. It was quite good because they could take blood from the line as well as deliver medications.

------

I'm incredibly weak and my main focus at the moment is just getting stronger. I'm advised to eat high protein for wound healing. I also have to eat low fibre food generally and carb heavy. This is to help thicken my poo (tmi) and reduce the frequency with which I need to go to the toilet.

On my last day I got the lab results. It turns out that they didn't get all of the cancer in the first place and some was still in the colon. Since the whole colon was removed it shouldn't be a problem. Importantly, my lymph nodes were clear. I don't need any more treatment. So, apart from follow up appointments and district nurse visits I'm at the end of my treatment. It has been a strange experience, being a 'cancer patient' for twelve weeks. I recognise how lucky I am in comparison with others.

Actually, it's quite

nice to have her home.

#1h

she's home

"mummy's tummy is still sore" was a common refrain this afternoon, as there were many cuddles and attempts to climb on top of her. And don't get me started on the kids.

Food will be tricky for a while, as we figure out just what she can eat, and in what quantities. As she's barely eaten in over 3 weeks, she finds that the act of chewing makes her jaw sore. Mobility, as I suspected, is also an issue and our lack of electric bed will be a hindrance to grimace-free entry and dismount.

I forgot to mention yesterday that the pathology report said that the sample that they received was 1.1m long. Ouch.

Can you imagine a 3 1/2 week hospital stay without the internet?

This is the first time in, like, forever, that I've been at home in the mid-evening, and frankly I can't remember what I'm supposed to be doing. Of course she has been asleep since 8:30, so our usual evening banter has yet to return. I seem to have stopped watching evening TV in recent weeks and even though I'm not missing it, I look forward to sinking back into my flat-screen rut. And the Ashes start soon so there will be more GMT + 0 cricket that will continue to scramble my sleep cycle.

I started doing these blog entries to take the pressure off her while she recuperated. As she's back, it's time for things go back to normal and for her to come up with a couple of cricket puns for a change.

While I'm not quite willing to say goodbye yet, I guess I'll be stepping back now. All good things must pass.

Be the tap.

#1 Husband

much like the NZ cricket team at any knockout tournament....

she's coming home sooner than expected.

As in today.

When they make a decision, a decision sure does get made.

I'm still taking it in. Larger daughter is delighted, but we haven't told the other one yet. I think Nana is looking forward to someone else being at home.

Drains to stay in for a week, with district nurse visits. Her Surgeon doubts any new news will come from the histology. We've seen a copy of the preliminary result - interestingly, although the Gastroenterologist was confident he'd removed the tumour when he did the original colonoscopy (which feels like it happened about 8 years ago now) there was still a bit of tumour left at that site. Very interesting, no? I guess people knew what they were talking about when she was invited to choose to have the surgery.

I've gotta go - there will be much packing later today.

#1 Husband

ps - the house survived

She should never have told me how to do that.

much like on day 3 of a (5-day) test match involving NZ...

it seems like we're approaching the end already.


A veritable whirlwind of activity, today has been.

I can barely keep up. For the last 2 weeks I've effectively been telling you how little things have changed, but now I almost have to keep a list.

Most crucially, the team have discussed the end point. The are talking about a discharge - this weekend!. Personally I find a weekend discharge after this type of stay an interesting idea, especially if it's on the Sunday. Exactly who will be around to give that final check to confirm that all is well?

She is now free of her TPN feeding. Again, interesting timing. I acknowledge that I'm no expert in TPN, and I don't fully understand the (very specific) criteria for being on it, but in total she only had it for 2 days, and at the start was only on a very slow rate. The intention was to address the weight loss and relative malnutrition from the previous 3 weeks of eating nothing. Now, she is finally eating again, but it seems a lot of effort (including PICC line) for a couple of days of treatment.

She's eating again. Even toast. Not much, mind you - she says she ate about 1/4 of what seemed to be a meagre dinner. But things will have shrunk a bit and it'll take time for her capacity to eat returns to normal. Then there's the side issue of what she can and can't eat. She's been getting chummy with the Dietician, who tells her there'll be a bit of a list of yes/no food for the next month or so, and that she'll need to up her protein to assist healing.

PCA gone. At long last my nemesis Tom the button has been banished. As I warned her, any relationship that is based purely on one half supplying narcotics to the other is unlikely to lead to lasting happiness.

Naso-gastric tube gone. No more having her bile draining into a bag like she was the Queen of Prussia. Now miss lah-de-dah will simply have to vomit like the rest of us. "Let them eat cake" she said. Well, now she'll find that cake coming back up tastes like sugary chunder.

She has no more pumps or vacuums plugged into her. No whirring, no beeping, and no having to unplug them to go to the toilet. The room is eerily quite, save for the gentle sigh of uprooted trees slamming against the window.

She just showed me how to do that link thing with webpages.

I'm sure I won't become addicted.

She still has 2 wound drains, the PICC line, and the last IV line I put in on the 17th (I know it was the 17th because, as per protocols and best practice, I date them). She's sweating less. I presume that her bloods are reasonable.

My dad got out of hospital yesterday and is taking less pain relief than I think he should. I've told him to watch for signs of low blood pressure, because I don't want him to faint, fall, and do the other leg.

#1 husband

Night routine

7:30pm: the ward starts settling in for the  night. I take wee nap.

8-8.30pm: #1 husband arrives for blogging, chatting and exchange of clothes. Fingerprick test

9.30: no point going to sleep

10:00pm: meds, last obs from afternoon nurses.

10:30pm: try getting to sleep.

12:00: first round of obs for night shift.

2:00am: fingerprick test.

6:00am: fingerprick test, blood test, medications.

6:55am: kitchen staff enter to replace water jugs. The day begins.

In amongst all these there are toilet trips, and IV bag alarms going off - these usually need changing overnight as well.

No cricket pun. NZ team simply useless

Oh, wait - unlike the NZ cricket team....

she's had the sweet taste of success.

There you go.


4 Tblsp pumpkin mash
1/2 tub yoghurt

Place in mouth. Chew and swallow. Don't puke it up. This is the recipe for her first solid lunch since the stoma reversal a week ago

Dinner:

6 Tbsp pumpkin mash
3-4 florettes boiled cauliflower
2 Tbsp mashed potato

Method as above.

She's quite pleased with herself. When you include her impressive walking skills ("look - I can walk") she's almost intolerable. Tom the PCA button remains, but his influence is on the wane. In the next couple of days it looks like he'll stop sharing her bed.

When we drop the young one off at creche she usually kicks up quite a fuss, with tears and everything. At the very least she needs a direct transfer to a teacher. But today, I plonked her down on the floor only near one of the teachers, and she almost waved me away, such was her contentment. I suppose you'll tell me that's a good thing. I'd say she's missing mum, if the growing list of things that Nana's not allowed to do with/for her is anything to go by.

The other one claims sore throat so it looks like being a home day tomorrow. I don't think the shared room is working out for her so well - it seems junior is causing a bit of sleep deprivation. I can sympathize - well, I did sort of, at 1:30 and 5 this morning.

This finally looks like being that much-vaunted short post I keep going on about.

#1 Husband

As is possible in any cricket match involving India or Pakistan....

it's been a stitch-up. *


Progress. Finally. Sweet, sweet progress.

1) PICC line (long IV line that goes all the way up from the elbow, almost to the heart - lasts longer and less risk of infection) went in this morning. This will be used for TPN (total parenteral nutrition). This is not just a milkshake that they shove down the vein, rather is a very carefully manufactured and immensely expensive mix of nutrients in their most basic forms - amino acids, carbohydrates, fats. It is meant to imitate what gets absorbed into the blood after you've digested it.

She's had almost nothing to eat for 3 weeks and has lost weight at an unhealthy rate (in other words, at the rate any TV commercial or reality show would have you believe is normal). She's also as weak as a kitten that's spent the last 3 weeks in bed having had a feline total colectomy, so they need to bulk her up.

2) then they closed her up!

The PICC line was done in theatre - it didn't look like there'd be time to do the main procedure today, but she was whisked back down around 3pm. They took off the vacuum dressing (she accidentally saw it today in the mirror and freaked out), and decided it was ok to close up the wound. After only a brief stay in Recovery she was lucid enough to be texting by 7. Her anaesthetic must have been so mild that even Michael Jackson could have survived it. Rather than giving a hospital anaesthetic in his lounge, that doctor of his should have learned to say "piss off" (see my previous post).

No word on likely discharge date, but frankly I don't want her home too early. You should see her shuffling to the bathroom. She'll need to be eating properly first anyhow, and the TPN will be going for a few days I'd say.

She continues to love Tom for medicinal reasons.

In other news my dad stayed in hospital today having had the odd dizzy spell - looks like he'll be out tomorrow.

I see the weather around the country will be crud for the rest of the week. Not relevant to this blog subject, but what is??

#1 Husband

* http://www.espncricinfo.com/infocus/content/story/infocus.html?subject=44;page=2

http://www.espncricinfo.com/indian-premier-league-2013/content/story/636201.html

much like a NZ batsman at any stage of their innings, or indeed the team at any stage of a tournament...

my dad is nearly out.


After only a couple of days in hospital and surgery this morning, I'm told that he might be discharged tomorrow. Imagine that - I didn't think you were allowed to leave hospital until you'd been in for at least a fortnight.

I don't envy my mum over the next few weeks.

Although oddly enough I don't envy me either. Who do I envy? I guess I envy any bowler who's playing against the NZ cricket team, because their career figures will look much better after the game.

Let me do exactly what I said I'd never do and tell you about a patient I had today.

She came in asking for my help (because that's what I do). She wanted a letter from me, that said that she had a medical condition that prevented her from continuing with her gym membership. Eh? I asked. Well, she took out a 12 month membership a couple of months ago, but at that time was planning to leave the country and cancel it when she left. But her plans changed and she's staying. She can't cancel the membership now, but can't afford to keep paying either. Of course she doesn't actually have a medical problem, but wanted me to say that she had - I didn't think that the stress of not having enough money to pay counted, given how freely she'd joined in the first place. So, in the most professional way possible, I declined to lie for her. I doubt I'll be treating her winter colds any time soon.

You will note that I have not given any identifiable information in the above story.

I have a list of blood results, for anyone who's interested (not from the lying patient, but from our real one). I'll just type it out and hope that the formatting holds when I save the post.

                  9/6         12/6          13/6          14/6           15/6         16/6

Hb             123        108            128            112             94            109
WBC          10.5       15.5           27.1           18.3           13.2          10.9
plts                                            799                                               581

CRP            21         76              320             303           140

Mg                                                                0.72           0.77         0.66
alb                                                                                   20             23


And for those of you lucky enough not to need to understand those numbers, I can assure you that the ones from 12 - 15th are rubbish.

Today she seems to have been ok - showering herself, walking a bit during the day. Even her bowels are starting to co-operate to some extent (very slight, but it's something). I suppose one issue is that I only turn up at the end of the day, when she's a bit wiped out. While I've been here she's had a bit of vomiting and so they had to aspirate the naso-gastric tube. She's nil by mouth for now.

Tomorrow they'll take her back in to re-do the vacuum dressing. She's asked me to bring some of the masses of DVD's we've been loaned.

Much like the NZ cricket team I'm done.

#1 Husband

This was meant to be a short one.

but the handles don't match the vanity

The record, held by NZ, for the lowest ever team score in test cricket will never be broken….

Unlike my father’s femur.

Yes, just when you thought there was chance that the country’s health budget might record a surplus this year, my family comes along and finds another way to spend our hard-earned health dollars. Why was he up a ladder pruning trees today in the rain? Who knows.  Do you think he regretted his decision even before he hit the ground? Probably. What are they going to hold him together with? An intramedullary rod.

Any chance now of my mum coming down to help out with our favourite cancer survivor’s recovery as planned? 

Not

A 

Hope,

Marvin.

He called to tell me while waiting for the ambulance. When he described where the break seemed to be I told him 1) don’t eat anything; 2) tell the ambulance staff if you get short of breath STRAIGHT AWAY. A normal son would’ve said something like “gee whiz dad, are you ok?”

I have no tether. Which is just as well, for I must therefore have no end to it. I’m not complaining, though. That’s for tomorrow’s blog. Ha ha.

My mum doesn’t drive, and they live in Auckland. So unless she’s going to use Auckland’s weekly bus route my sister will have to be the taxi service for a bit. Of course under normal circumstances I’d pop up to help out.

In several other ways today was actually quite nice. We gave the kids a visit this morning that only ended a little badly. Make-do-mum-in-law and I added to the glory that is now our bathroom with a snap decision that was the culmination of months of dithering. Elder one spent many wonderful hours with her friend (well, it was wonderful for us), during which time they attended some sort of science demonstration based on fireworks. 

In other more peripheral news, she’s had a rough day with tummy pain (which she now realises is partly due to the vacuum dressing). She’s just told me that the children are becoming a bit abstract to her – lucky, lucky thing. Her eating still isn’t fantastic. But my IV line from yesterday is still working fantastically. She accidently saw her wound today.

Three weeks tomorrow.

NZ play tonight but even I think I should get an early night.

#1 Husband

I am the cabinet

like an English cricketer and an Aussie cricketer who meet in a bar....

we thought it best to separate them today.


I didn't quite get this until much later in the day, but the reason why kid the older was acting like a perfect terror and refusing to come downstairs was because horror child the younger had woken her up at 5am and she hadn't been able to get back to sleep.

I did manages to coerce her out of her room with the promise of a visit to mum (her first for an uncertain number of days), and she did perk up a bit. Relatively. Later she and nana went, at her request, to the observatory for some leisure science while I carried the other one around town on my back, looking for the perfect pair of canvas shoes on sale.

I am the shoe.

In other news she's had a bit of a down day. Bit tired and wiped out. I was here when her registarar came around this morning, and she confirmed that they'd be doing another dressing change in theatre on Mon or Tues, and she seemed doubtful that they'd be able to sew her up that early. She hunted down the preliminary results of the lymph node histology, and things seem ok so far.

In more positive news, she tells me that she's had a degree of control over her bowel motions today, but frankly who wants to read about that on the internet.

When I walked in she was watching TV on demand on her iphone. I reminded her that she does have a computer here, but she said it was too much work to get it out of the cupboard, what with all her tubes and such,. I've set it up for her now.

Unable to find today's bloods in her file (she has a big ringbinder), and I don't feel like logging on to find them. They've been going on about paperless labs, so maybe that's why there's no cumulative results sheet.

#1 Husband

much like the NZ cricket team from about 2003 onwards....

her progress has been a bit disappointing.


But there's a slim chance that things have taken a step forwards.

Today she had surgery #3 since her arrival a mere 18 days ago, when they did indeed take her to theatre to change the vacuum dressing. I got a call from the Registrar afterwards, telling me that they'd debrided some necrotic tissue from around the wound (ie - they cut out the dead stuff) and they were hopeful that this was the cause of her slow progress over the last few days.

For those of you who care, today her bloods were; Hb 112; WBC 18.3, Neutr 15.5, CRP 320

There doesn't seem to be a running list, so I don't know her recent results, but I think you'll agree that she's not left many CRP's for the other patients to share.

(for all you Normal People out there, that stands for c-reactive protein, and is a blood marker that tells you that there is some sort of inflammation in the body but not where it's coming from., So it'll be raised after any operation, or with an infection, or if you burned your hand. It should be less than 7. In GP land we get excited if it's much more than 20. Someone with an appendicitis might be 100-200. So you get the picture. Now that the dead tissue is hopefully out of her, it will be interesting to watch the trend over the next few days).

In fact, tonight she's seems more lucid and happy than she's been pretty much since she had to come back from ward leave on Sat. She remarked that after her previous general anaesthetics it took a couple of days for her head to come right. However she's still knocking back the PCA* and was telling the nurses that her pain wasn't too bad right now because it's only 4/10 intensity. The fan remains on, and her new favourite health consumables are the little sponges on a stick that look like lollipops and which she can soak and use to relieve the dryness in her mouth.

She has forbidden me to take a picture of the wound and vacuum dressing, which means that it's pending. But just in case, I can at least tell you that since the adhesive is clear, the fast that you can see some of the subcutaneous tissue (ie - the layer of tissue under the skin) makes it look like vacuum-packed meat at the supermarket. You don't see any flesh, but there's the soft orange colour of the fat layer that's under our skin.

Mother-in-law has scored another week of sick leave.

She's looking at me like she knows I'm typing something dodgy. There goes the soft chime of the PCA machine as Tom gets another gentle caress, and I can hear the whir of the pump - sounding like a distant Tardis - as she gets another hit of that sweet, sweet fentanyl/ketamine mix.

 #1 Husband

* the button's name is indeed Tom. "Ted" is the name she "accidentally" uses from time to time when she's high in bed. Don't read that last bit if you're related to her.

beautiful, beautiful creature

much like an Australian opening batsman....

she's putting up a fight but is in quite a slump (and has a weakness outside the off stump)*


I'm sitting in her toilet (which she's not using, for a variety of reasons), trying not to let my keys fall in. It's so I don't disturb her, but she's sleeping the sleep that only a fentanyl/ketamine PCA can give you, looking like Sleeping Beauty - if Sleeping Beauty had a naso-gastric tube coming out of her nose.

Oh yes - they replaced the NG tube and got 1100ml out. Hence her nausea yesterday. I popped in to see her after I dropped the little one at daycare, and conversation then was "languid". Her bowels are stirring, and I'll say nothing more on that.

I'm told that she's on the acute theatre list tomorrow, but only to replace the abdominal vacuum dressing. I thought it was a bit early to be sewing her back up - she's still on IV cefuroxime/metronidazole.

I have to move - blogging on the toilet is giving me a dead leg. The left one. Leg, that is, not the left toilet. There's only one toilet in this room. What do you think this is, the new Auckland Casino Conference centre that the PM sold out the most vulnerable for??

Ok I moved now.

But I disturbed her. She tells me that they'll have a look at things tomorrow and if things look fantastic they might sew her up then. I'd heard it might be under sedation, but the word is general anaesthetic (third one in 20 days - now that's her tax dollars at work. By which I mean it's my tax dollars at work) .

Older one was feeling under the weather and so had a home day - it's possible it was emotional > physical, but we'll give her that one. Someone else at my work (it's why I have tax dollars) gave us a meal for laters, which is nice.

Nana's travel plans (or lack of them) are starting to cause concern - she should have been away 4 days ago, and there's not really an end in sight.

So everything's ship-shape around here.

#1 Husband

* http://www.espncricinfo.com/icc-champions-trophy-2013/content/story/641109.html

much like the NZ cricket tourists of '94-95...

she's as high as a kite just now*

She and her best mate, Tom the PCA (morphine pump) button, are having a nap. Others have told me that the two of them have been quite inseparable.She sent me a text saying that she'd been sitting up, but I think she was just chasing the dragon.

This morning I decided to look at the dressing, and I've gotta say - that was a mistake. First time my medical poker face has fallen for a while. To be fair though, if you saw it I think you'd agree that at first glance the black gauze that's packing the wound looks a little like necrotic (dead) tissue.

I went for my first jog since before her op today. Pleasant if a little slow.

It's a bit late, and given how little she's done today I might leave it at that. Make-do-mum-in-law and I spray-painted the exposed edges of the vanity cabinet. I hope the kitchen door stayed open, or there'll be more than one druggie in the family.

The tap is a Grohe.

#1 Husband

* http://www.espncricinfo.com/wisdenalmanack/content/story/153261.html

esp start of 2nd paragraph

Reunited

Ted and I are back together again. Patient controlled analgesia is the best. I'm also sitting, which is my mandatory exercise for the day.

Tapping

Dzbbnnnnn

much like the NZ one-day team up the middle of any tournament...

she's still alive, but only by net run rate.


What we thought was the long-awaited day finally arrived, when I got a text at 8:30am - "off to theatre now!". They had decided last week that the stoma wasn't going to cut it, and after the false start that was all of yesterday, it was her turn.

I've clearly not been trained as a Surgeon. First of all, the milk of human kindness has yet to be beaten from my weary soul. Secondly, I tend not to rush to IV Augmentin to treat a bit of a fever. Thirdly, I don't have a clue about the complexity of surgery. I was telling make-do-mum-in-law that this would be a quick sub-one hour nip and sew, that she'd be in recovery for a couple of hours and it'd be kippers and scones for afternoon tea. When I got the thumbs-up call from the surgeon to let me know that he was done, it was close to 12:30, which suggests an op time of 3 hours +. He then went on to tell me how tricky the procedure had been, but that they'd always known that this would be a hard operation. Furthermore, given how much stress the tissue around the stoma had been subjected to, they were worried about infection so they haven't actually sewn her up just yet - they'll leave it open but dressed, and assess in a few days and hopefully finally patch her up then. I'd be perfectly happy to do it myself at home under local anaesthetic - yet another blurring of the boundaries she tells me they used my IV line to induce her anaesthetic).

But despite all of that, at the very least the stoma is gone. I'd lost count of the number of times it had leaked, and even if she knew she'd never tell me. Apparently the skin surrounding it is quite unhappy, and that must be one reason to leave things alone for a bit.

I'm sure her dynamic power zap sports energy drink is simply Raro in a silver package.

Trust the NZ team to take a run-chase that should have lasted 25 overs and turn it into the director's cut of "the Great Escape".

Tonight was much fun. Oldest one chose not to brush her teeth. I "compromised" by making her brush her teeth anyway.

She had her colonoscopy exactly 2 months ago. It was a Tuesday - I'd taken the day off work because she was going to be sedated and therefore more stoned than usual. I'd have preferred to have spent the last two months practicing guitar or teaching the kids how to ride a bike, but there you go.

She sleeps.

#1 Husband

Waiting, waiting

I feel a little bit like a fraud staying here in the hospital at the moment.  I feel well enough to be at home, it is just that the stoma is so problematic.  Even the stoma nurse has not been able to control the leaking - the stoma is shrinking as it heals and is too small.  One of the nurses has hit on a solution to the leaking - excessively bandaging the area and using heaps of water proof tape. It lasted very well for twelve hours, but unfortunately it is at a cost - my skin is starting to breakdown.  All of this will be fine as soon as I can have the reversal surgery- hopefully tomorrow.

A big post-surgery change is diet and fluid related.  Food wise, I have to eat low-protein, high salt food.  This is a little trickier than you might think.  White bread, mashed potato and cheesy salty crackers are my new friends.  I also need to take electrolyte replacement - the equivalent of two or three sports drinks a day (sports drinks don't actually have that much salt in them, they aren't as good as the advertising has you believe).  My Mum found some good stuff at the supermarket.  I do need to drink round the clock though.  I no longer feel thirst - I go from fine to genuinely dehydrated in a snap.  It can be hard to talk because my mouth is so dry.  Because I don't feel like eating much at the moment/ can't take that great a volume getting all the fluid down is challenging.  Bleurgh.  I think that the water/ salt requirements will remain, but over time I should be able to introduce more foods.

Being nil by mouth today was therefore not fun.  I don't care about the food but not being able to drink is quite hard for me at the moment.  I asked for some IV fluids but my veins have become rather sick of IVs and the hand quite literally spat out the cannula.  I got an awesome swollen lump of fluid on my hand as it went.  The house surgeons continue having difficulty cannulating my arm.  They have asked me to get the anaesthetists during surgery to add an extra line just in case!

I was told that I could eat around 3.30 which turned out to be a mistake.  At 7.30pm the nurse came and told me that the surgeon had just finished his elective list and couldn't fit me in.  I wonder how impressed he would have been to call me to theatre to learn that I was eating?

Anyway, fingers crossed surgery tomorrow.  While I'm waiting I'm watching heaps of episodes of Homeland.  It just got very good!

Thank you all again for your emails, visits, Facebook messages, practical help and good wishes.  They all help to keep our family functioning at the moment.

Leave recalled

I tried to go on leave but it didn't work out. First, I had to promise to come back each day for anti-clot injections. Next, I had to come back for a stoma bag change. 

Yesterday morning I realised that the stoma bag was leaking. Down to the hospital. Back home for lunch and a three hour nap. Down to the hospital for clexane injection. Back home and I realise the bag is leaking. Back again. Bag change. Home again. Finally, at 11pm I realise the bag is leaking and there is a lot of blood. Back again.

I've also had some wound seepage so have felt quite disheartened at the mess my stomach is.

The stoma was always a horridly awkward thing and the surgeons are very determined to do the reversal surgery tomorrow. 

In the meantime I have a private room with shower and toilet so feel quite swanky! I'm very much looking forward to this being over.

Going home!

Got the wrong date - Colorectal cancer meeting is next week so my results will be discussed then. All results, both positive and negative go through the meeting.

I had my fluroscopy and everything is well healed. I've been granted leave from the ward so can go home this afternoon, returning Monday or Tuesday.  Yay!

An actual update

After the last post I've had a few enquiries as to #1 husband's mental health. He is fine! His creative juices seem to really flow in the blog format. 

I have a procedure today to see if everything joined well on the inside. If it is OK then I'll have surgery to reconnect everything on Monday or Tuesday and should get weekend leave! Home!

If not joined well on the inside then I'm not sure what will happen. The stoma made is really tricky - not one that I could actually manage to change myself. I guess I'll know more later.

Today is Friday and so oncology MDM day. We should learn after today what the story was with my lymph nodes. 

Beautiful flowers from West Australia family. The arrangement has been much remarked on due to the smell and mix of luxury flowers. Yesterday I took it over to my sick neighbour so she could have a close inspection and a smell of beautiful air.

I have the best visitors. Even if I did have to take morphine after this exuberant visit.

The night blogger. He comes when I'm nearly asleep and taps away, chuckling to himself.

#1 Husband putting a line in my arm. All my veins gave up and despite a number of tries, no one could put one in. #1 Husband is actually super good at doing lines so made a house call. Given the alternative was a PIC line inserted by anaesthetists I'm glad he did it! He is held in awe by the house surgeons and students in the surgical team.

I'm the tap.

I'm not a real tap, of course. That would be inSANE.

Rather, I am the personification of that perfect tap that he has been seeking for these last few days and weeks.

I am like a filling.

I am an amalgam:

I am traditional and I am modern. I am a mixer. I am either mains or mixed pressure, but not both. I'm more square than those found on most bathroom vanities, but not so square that you could caress me with your cheek in the hope of the perfect morning shave. But if you want to caress me, I wont' say no.

No, no, no....

Turn me left and I am hot, turn me right and I am cold. Turn me on and I am yours.

I know there is a basin waiting for me. He knows the basin is waiting for me. I am out there, somewhere - when will he find me?? Will my base be square or round? Of what base metal shall I be made? The best of us all, the most base of us all - they are indistinguishable through the dull lens of time. And that she be our legacy.

Sing my song.

A lost soul shall hide my tears
A founding thought of looming fears
Unreachable, but take me now
Alone and all alone

Hey time
Hey days
Hey undefined displays
Refined away,
Away.


I am the tap.

The third neighbour.

I barely noticed my neighbour the first night, just deduced her presence from the sighs and snores. The next day it was her occasional off colour remarks and scores of visitors that broke through my near consciousness. The racist comments about the staff got to me, as well as her inclinication to give out my medical history to her visitors when she thought I was asleep. In desperation I asked the nurse for a pen and scribbled a note, asking the shift coordinator to consider a room change. The next day was my severe pain day and as luck would have it, the woman was discharged.

As a reward for bad pain day I then got moved over to the window spot. Shortly after my new roommate arrived.

-------------

I should note at this point that the room next to mine is very cheerful. There were two guys in there, who would listen to the rugby on their respective TVs and chat animatedly. I wanted to have a cool room.

--------

The second neighbour arrived with her husband and settled in to her spot. She was not pleased to be here. Her husband was not pleased that she was here. Together, they were not pleased. At first I thought it was charming bickering but it was not. This was not the private hospital she had signed up for, and therefore the room, bed, nurses, TV, food and service were all wrong. She was scathing.

In my head she looked like Margarrt Thatcher. Her voice was coldly imperious in her pleasant exchanges and harsh in her angry ones. I kept to myself, maintained a low profile and hoped like heck one of us would leave soon. On her last night my drip alarm woke her: "just get it" she snapped. Startled, I reached to silence the alarm and she directed "just get the phone X." She thought she was at home. At that point I got a little sad for her - she was quite disoriented, afraid and feeling lonely.

Neither of us were particularly sad when she departed to become a floater patient on another ward.

I had the room to myself for eight, hedonistic hours.

----

My third neighbour introduced herself to me once she was conscious, around 4:30am. We've had raucous chats, enjoyed 'sunbathing' in our deck chairs during the mandatory post breakfast chair time, swapped dry mouth horror stories and talked about our gardens. I've been formally introduced to her very kind and caring husband and I suspect tomorrow, when she is capable of staying awake longer than ten minutes, we will enjoy some more chats.

Eating in the hospital

Eating in the hospital, a photo essay. Must run, don't want my broth and pills to get cold!

   

               

much like a NZ test innings....

... this will be brief, directionless, and will leave you feeling unfulfilled*


Today has been quite good, even though I didn't have time to look at more taps. They've finally taken out the naso-gastric tube and she's coping ok. Her intake is improving, although we're getting conflicting advice about her permitted diet. The info from the dietician suggests a period of quite strict restrictions (low fat, low fibre, limited range of vegetables), whereas the surgical team seem quite relaxed about her eating anything she wants. We're erring on the side of caution but it would be nice if we didn't have to spend a month feeding her nothing but rice, potatoes, skinless chicken, and soft carrots.

She managed a couple of visitors and even tolerated the children for a while. I was only working a half day and so was able to pick the fuzzy-haired one from school (in a few weeks this will be my new normal). I brought her to mummy and left her here while I went to get the noisy one from daycare. I'm told that while I was away she took great delight in caring for mum (pushing the IV pole as she went to the toilet etc). The presence of both kids has taken it out of her, especially physically. There may have been a bit too much leaning on mummy's tummy and making her shuffle around. Having said that, I just watched her walk to the toilet and she didn't need to lean on the wall and had minimal swaying.

At the late ward round they gave a tentative time-line: on Fri she'll have the fluoroscopy that will tell them if there are any leaks from the anastamosis (the join bit). If that's healing well enough, they would look to do the stoma reversal early next week to free her of the bag. This would give her her theoretical final plumbing layout, but would also be the start of the hard bit as her digestive system finally has to cope without the colon.

I read on the BBC website that only 3% of Indians pay income tax. Weird, huh?

http://www.bbc.co.uk/news/magazine-22772391

The massive stack of books that she brought remains untouched. She doesn't think she'd even have the energy to watch TV, so it's just as well we're not spending $8 a day on TV access cards. We're using her cellphone as a modem for the computer, but if she didn't feel like paying or having security she could hook into the signal from the motels across the road. For almost the whole day she

* I told you so

#1 husband

it only hurts when she laughs...

so I haven't been talking much about the cricket.

I think my blog posts are more interesting than her blog posts. Her ones have fewer than half the cricket puns, and don't quite convey my own magnificence.

Since we're talking about me, I can tell you that I went back to work today. Funny thing though - I called up this morning to offer my services for part of the day, only to be told that I was down for a full day already, was almost fully booked, and in fact had someone waiting. I won't tell you how many minutes after my official 9am start time I was calling - suffice it to say it was 1.

I did make it in the end and to be honest I felt a bit like a stunned mullet (but I'm sure I was giving the right answers). Learning that I had been right about a woman in whom I had suspected ovarian cancer was oddly unfulfilling. I'm just going to do half days for the rest of the week. One of my colleagues ordered me to go for a run tomorrow. Others have given us frozen meals. This is nice.

I entered the larger child in the kids' Miracle Mile for the upcoming marathon. Mum made me order her the t-shirt. I'm looking forward to taking her in to pick up her race pack - I always find it a very validating experience. It's still tricky to find a good time to take her running, so a few half days will be useful.

Junior had a good day with the nanny and at toddler gym. Nana had a good day away from Junior.

I almost know what tap I want to get for the basin, only I don't want to pay $400 for it.

I think I must increase her metabolic rate. Having been free of temperatures since midnight last night, I've turned up this evening and pushed it up again. It's only 37.5, but for most of the last two or three days it's been a touch over 38. She's doubled her range of foods she can eat - she's now up to red AND green jelly. She was very pleased to have walked around the corner to the neighbouring part of the ward today (she got a photo), and when she feels like showing off she'll walk - unassisted* - to the bathroom. Less pleasing was how the nurses ignored her warning of her dangerously full stoma bag. She did tell them so.

This is now day 8 post-op and if I told you she looked well, my pants would combust. What worries me most though is how little TV I've watched recently. I haven't even seen the final of Dr Who yet.

#1 Husband

* she still need to lean on the IV pole. Less interesting than other poles she could be swaying net to. Don't read that last sentence if you're related to her.

My favourite things.

Tom, my patient controlled anaesthesia unit ( we slept together).

#1 husband, I always forget how beautifully he writes. #1 of ? Is a thought that comes to mind....!

Our family, friends and well wishers. My brave Mum who looked after me yesterday and woke me for the good stuff (Look Ems it is a dog) (SPCA visits here), the rest of the family sending support via emails, phone calls and visits, our friends, led by the indomitable Ceri (we are trying to suss out a suitable thank you gift but got stuck at statue in honour/ island) and everyone who supports the carers so that they can help us. Loving funny/ snarky texts and pictures. 

Thanks guys. Xxxx Emma 

Update

I have a common post surgical lung infection that I can't spell. The solution is deep breathes and antibiotics. I have another infection whose origin is unknown which gives me fevers. The last few days are a bit hazy because of been hallucinating with tiredness (true) and the fevers leave you feeling crap. It is hard to believe that it has been a week since I walked into this place.

I had a CT scan today and it showed a frozen bowel. Now that I can sit up and move, this should help. Once unfrozen I can process food and go home.

all these false hopes and setbacks....

1) suggest there's some sort of one-day tournament around the corner


I think that Martin Guptil is not so much red-green colourblind as red-red colourblind. You put him in a test team and you wonder why they chose him in the batting line-up instead of, say, a constipated anorexic heroin addict, such is his inability to produce runs. But replace the red ball with a white one, and voila - he's Martin "Lara-Tendulkar-Bevan-Sewag" Guptil. I suppose we should just be grateful that there's someone in the team can still occasionally impress us.

Hmm? Oh yeah - the other thing.

Well it's been a couple of days since I last updated. She thought she felt better so asked for the laptop to watch DVDs on. It meant that when I tried to log on to this blog either on my pad or the work computers here at the hosp I was asked for the security thing which needed access to her cellphone. Also I figured that if she was well enough to watch DVDs*, she'd be ok to write a four-line update herself and let me get on with my busy long weekend.

* she wasn't.

Much has happened and for irrelevant reasons I haven't slept as much as I might have recently, so the my time lines are fuzzy. But I'll have a go.

At some stage the naso-gastric tube came out then went back in again. The current one went in smoothly and is sitting more comfortably than the last one. I've always spoken of bilious or bile-stained vomit, but to be honest I never knew how stunningly green bile was until today. It reminds me of how they draw gloopy radioactive waste on "The Simpsons". She's effectively nil by mouth, but can have sips. She was allowed to have an ice block and the nurses very kindly soursed her a Kapiti Ice Cream bar, but she couldn't have it because a) she can't currently have dairy, and b) it was passionfruit and she's not allowed seeds. So I've been asked to remember, for laters.

The rectal tube was the source of much unhappiness (which surprised me - I don't know about you, but I've always associated rectal tubes with nothing but joy and happiness in both professional and social settings). When they decided they wanted it out (fevers, so all tubes out), they had trouble removing it. The Reg simply came by and yanked it out. Someone was not impressed.

Unfortunately after everything came out she continued to spike temperatures and was sore. They found something in the urine and started antibiotics, but the word on the street is that the Infectious Diseases consultant was not convinced this was the cause of her problems. And I suppose he's been proven right by the lack of response (for those of your who care, the antibiotic they chose to try first was.... Augmentin).

Last night she developed a new upper right abdo pain, worse with inspiration (no cough and no-one mentioned her oxygen saturations so let's say it ain't a clot on the lungs). They've bitten the bullet and she's just come back from CT scanning, looking for any leaks/pus. They had the wrong sized IV line so once again I fulfilled my deepest fantasy and got to stick it to her (some people find her veins tricky and I felt sorry for the House Surgeon on-call on a Public holiday. Also overnight they needed three goes to get her current small one in). I've actually been most helpful this morning, above and beyond my usual helpful comments and friendly criticisms).

And so here we are now. I need to be off - nana is just about to lose the kids (but only figuratively, unfortunately). Yesterday was hard, and to de-escalate things I had to take the little one out in the car to provide everyone with breathing space. They're still mostly fine, but as you can imagine things are delicate.

Ok - finally caught up. The net one will be sooner and shorter.

#1 Husband

ps - again, for those who care, her CRP is 170 (up from 150) and her white cells are around 11.

pps - of course we're going to lose the net match by 80 runs or 6 wickets