Discharged

I was discharged from the District Nurses on Monday.  I still have a small open wound around my belly button that just wont close but they seemed confident that it would close eventually.  All of the deep wounds that were infected have healed well and closed over.  The scars, while over most of my central and right hand side of my stomach, will be quite narrow.  Abdominoplasty (plastic surgery on my stomach) was discussed and will probably come up again when I return to see the surgeon in February.  This is due to my stomach having some bumps around the joins. If I wear fitting clothes you can see gaps in my stomach were the joins are.  These joins have been improving so perhaps the surgery wont be necessary.  I'm not really all that keen on stomach surgery at the moment!

I am heaps better.  I am back to full reading strength from last week (once I managed to read a book in one day I knew I was back on track).  I'm weak physically, but am heaps stronger than I was even two weeks ago.  If I am tired and my internal and external scars are over it then I walk with a bit of a hunch - this is reducing though.  I am still prone to the odd period of deep exhaustion (last Friday at school pick up I couldn't follow the conversation with a friend - she took H and sent me home to rest)!

It has been a very strange five months.  It was three months yesterday since I went to the hospital for my first operation.  I've now read all of #1 husband's blog posts and it is interesting seeing his perspective and updates.  I was really sick.  I don't remember much of my first week in hospital at all.  I remember it took about three staff members to force me out of bed the day after my operation (they needed to coordinate all the drains coming out of me).  I can remember the day they took all the drains and pain relief out and spending the day in incredible pain.  It was horrid watching my Mum so upset about my level of pain.  A particular Registrar increased my distress that day by removing the last drain without my permission.  The other doctors with her were quite upset at her behaviour and my distress.  I've discussed this with the consultant.

I remember very little eating and drinking.  I needed a nasogastric tube four times - explosive vomiting and severe nausea (actually worse than morning sickness) indicated my bowel was obstructed.  I didn't realise that air could could cause obstruction. Nearly two months of barely eating resulted in a rapid 20kg weight loss. Now I can eat most things again (oily food isn't really worth eating) but get full very quickly.  Also, eating between meals isn't worth it because it results in more toilet trips!  I've learnt that water, quite literally, goes straight through me.  So I have to drink with meals or have electrolyte water.  Trying to drink 3L of water a day mostly at meal times reduces my appetite as well.  I take eight tablets a day to try to slow down and bulk out my bowel motions.  I also take a further two metamucil tablets to do the same thing.  To give some perspective on things, I would be lucky to get away with less than eight or nine toilet trips a day.  Over ten and I have to take extra electrolytes.

My first surgery was very scary.  I thought that #1 husband would be able to come through to the surgery waiting area with me.  So did he.  We were both rather upset to be walking together to surgery and to be told rather abruptly that he had to say goodbye to me there.  In front of the whole packed reception area.  So I started crying and didn't stop until, presumably, I was under anaesthetic. I walked into the theatre like I was off to be executed.  By the sixth operation I pretty much recognised everyone and was cracking jokes until I went under.  I became very good at timing how much conscious thought I had left between being injected with the first part of the anaesthesia and blanking out.  I just had enough time to think of each family member in turn.

As I expected, there were some things that were done really well at the hospital and some things that were not very good. Surgery and the recovery area were very efficient.  Nursing care on ward was very mixed - from fantastic and hard working to sloppy and uncaring.  Getting a great nurse was awesome - you had him or her for the same shift for three days.  Getting a bad nurse was lame for the same reason.  I remember being very pleased that one lame nurse was assigned to me for the overnight shift because I figured it was hard for her to screw up taking obs once overnight and getting my morning meds.  When I had her during the day it was a disaster.  The surgical nurses seemed to me to be run off their feet.  It was a very busy ward, and surgical patients seem to have lots of things to monitor.

Seeing the children in hospital was nothing like how I thought it would be.  Prior to my admission I thought that I would see them everyday.  This became too hard on everyone.  The youngest would wail 'Mummy, Mummy, Mummy' as she left, leaving everyone in tears.  It took a lot of my energy to be as well looking as possible when they visited.   Until this trip I had never been away from the youngest for longer than a day, and from the oldest longer than the few days I was in hospital after my caesarean.  I missed them both, but was too tired to see them.  After years of being immersed in the trivia of their day to day lives they rapidly became kind of abstract to me.  I didn't have the energy to think about them much at all.  I was so glad to be finally discharged from hospital so that they could get used to seeing me each day again.  I think my oldest daughter understands that I am back home now for good, the youngest still gets a bit worried if she comes home and can't find me.

I consider myself very lucky that I was checked when I was.  Early treatment is life saving.  There is a smallish chance that the girls will also have the same problem as me - they will be offered colonscopies from their twenties.  If they do have the same problem (serrated polyposis syndrome) then finding out earlier makes it more likely that they will be able to avoid needing their bowel removed until they are much older (as they will be able to keep on top of polyp removal). I'm fortunate that my treatment is complete - I can't fathom getting through all that surgery and then needing radiation and chemotherapy.  For me, I will have an annual blood test and a rectal exam to make sure all is well.

This is my last post.  In a few weeks time I'm sure I will be back to full strength.  It is time to leave the medical world behind and get back into the details of my usual life.  Thank you all for reading, and for your support.  We received support from so many people, in so many ways.  Help with meals and childcare was awesome.  Well timed emails and messages of support were awesome.  DVD boxsets and hard drives packed with media were awesome.  Books and magazines - awesome!

And finally, my family - AWESOME.  My Mum spent six weeks living with us during all these surgeries.  This must have been tough on both my parents.  #1 husband - was very much #1.  He visited every night, and sometimes before work.  I felt bad for putting him through so much worry and extra work.  He did an amazing job.

Thank you and goodbye!

Childcare arrangements: Nanny interviews

Making childcare arrangements for the next few months is kind of a full time job at the moment.  The arrangements we've made include a nanny, childcare and <fingers crossed> after school care/ pick ups from friends.

I requested the help of one of the big childcare agencies and they (eventually) got back to me.  By the start of this week I had three CVs from them.  However, one didn't meet the criteria, one was overseas and non-contactable and the other didn't call back - until yesterday.  Luckily a friend happened across a woman keen on nannying during school holiday activities and collected her contact details.

I got a lot of good tips from friends about interviewing nannies:

• Judge not the presentation of their CVs.  Only one of the CVs I received looked like any kind of CV I've written before.  I would have been horrified had I not been prepared.  But I need to recognise the CVs I've written for jobs I've applied for need to present information differently than the CVs of people who professionally do childcare.
• Nannies may not engage well with you, but it is mostly how they engage with the children.
• Being a good employer is important - remembering that nannies can be quite vulnerable in their employment as they are often the only employee in the house, and might not be great at standing up for themselves.  We have tried hard to get good salary information so that we can offer a fair, liveable salary.

I've interviewed people for jobs before but this felt quite high stakes.  I was also once a manager for about six weeks during which the person required no particular management.  But having a nanny, an employee, looking after your kids and who you will be forced to spend a lot of time with while very unwell feels kind of high stakes.  Also, I really hated the two or three weeks that I used a nanny years ago via ACC when H was six months old (I sprained both ankles simultaneously in one of the weirdest ever accidents).  I resented the heck out of that nanny because I wanted to be caring for H myself, and not a stranger.  Also, we were just about oppositely sited on every single issue in life, including parenting.  When she started ringing at night for medical advice from my husband we realised that she had no particular perspective on our working relationship and we solved the problem with my ankles healing and no longer needing help.

I interviewed two women and I'm really hoping the first woman agrees to taking the job. She has varied interests, a mature outlook, good educational and practical experience and seems really, really keen.  She tried engaging both girls, had a fantastic CV (information and photos which worked well) and seems like she could deal with the unusual situation of one parent being at home but variously being able to engage with her child.

The other person I interviewed had a bit of a disaster interview.  She got really lost finding our house and I spent ages outside our house in the rain trying to work out where she was and guide her over the phone.  She has a nasty tooth infection and was in awesome bad pain.  I tried really hard to ignore these factors and focus on the interview itself.  I've learnt not to do a job interview in serious pain or ill health!

Finger's crossed the first nanny says yes!

After school care is proving tricky at the moment (they have a waiting list).  I've spoken with the Headmaster for his ideas and he has been very helpful.  There is a possibility of getting H into the programme and her teacher has offered to have H stay on a little later if necessary.  We are very grateful to the school for their kind help.  But it might only be a problem for a couple of weeks - between my Mum leaving and me being well enough to drive.  We might be able to wing it with friends/ playdates etc.

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

I had just relaxed after my mini hospital disaster earlier in the week when I got a call from the familiar 'blocked' number.  After being assured that there was no hurry to get my blood tests done it seems that there was, in fact, a hurry to get them done.  I took advantage of having the nurse on the phone to go over the prep instructions (I think these should be written down for all ops, not just the routine ones with prepared brochures). In an embarrassing moment I forgot the word for enema and had to describe the process while my brain tried to catch up! 

-----------

I'm assembling my emergency bag of books.  Since I read quickly I need a lot of books around to satisfy my reading habit.  I've trawled through the annual library book sale and the cheap bins in book stores.  If I get a huge stack from the library before going in to the hospital I should be OK.  My next plan is to download/ borrow a lot of DVDs.

_______

An oncologist friend has suggested that I self-refer to the Cancer Society and I think I will do it.  I've been trying to minimise the 'cancer' part of all of this - after all, it is probably gone and the surgery is more of a preventative need rather than a cure.  But they do have great written resources and a lot of support (bowel cancer doesn't really have any kind of glamorous support organisations/ foundations, just some sensible information booklets and kind people acting as peer support).

Bluergh

I think that the health sector, and hospitals in particular, work really hard to be patient centred and deliver good service. But I'm not feeling that much at the moment, I'm sure mostly due to the acuity of the situation. Everything is urgent and hurried and I'm feeling rushed along. 

It is still less than a month since my colonoscopy and bad news and I'm three weeks away from major surgery. I've had so very many appointments and they keep coming. This morning I had anaesthetic pre-assessment which in the past meant a lot of waiting to see the registrar before demonstrating that I could open my mouth widely and put my head back. Today's anaesthetic pre-assessment was therefore a shocker:

• Meet the nurse taking my weight, BP, height and who performed an ECG. My height and weight were the same as last week, my BP slightly lower and I've never had an ECG before.  I thought that it would take ages, but it actually took longer to put on all the sticky connections than get the print out. 
• Meet the anaesthetist who went through all notes from previous operations, listened to my chest and confirmed I could open my mouth. Lots of questions and discussions re pain relief.  Those anaesthetists have some nifty tricks I'll tell you what.  There seems to be just about nowhere that they can't stick in an epidural or similar and pump you full of morphine.  Good to know.
• The 'enhanced recovery' something nurse who went over the hospitals 'expectations' of me while I'm in hospital. Very little lounging around will be allowed! They also went through a check-list to see if I had made sufficient arrangements to be out of action. This felt patronising, although I get it is important. Given I spend most of every day at the moment making arrangements for the care of the girls, I was unimpressed with their query.  In the end I just said it was covered.  I have a little book that I am supposed to fill in each day in hospital detailing my eating, drinking and time up (up means sitting up at least in bed). 
• The stoma nurse. This was sobering. She did have heaps of good written info, pictures and knowledge about life between surgeries and after the second one. I got an inappropriately cheerful free 'gift bag' of stoma stuff. I need to drink more water and eat more salt after the operation.  I asked about resources to explain the stoma to kids, she will look into it.  Stoma look dreadful and alarming - they are bright red. I'm not currently inclined to let the kids see it.
• The first nurse came back in and gave me an enema pack for the morning off the operation and some yellow carb drinks for the morning of the op. The nurse sounded as though she didn't quite believe the reasoning behind the drinks.  It sounded kind of 'pseudo science' to me - but then the drink is produced by Nutricia, and I'm still kind of anti them from my breastfeeding days.
• A House Surgeon and Trainee Intern then came in to ask me every single question I'd just been asked again. At this point I got annoyed with the repetition and started explaining where they could find the info rather than giving it again.  This was kind of pointless as it made things longer, but the duplication was starting to seriously annoy me. The TI listened to my chest, got all excited when she thought she heard something, and looked a little crestfallen when the House Surgeon disagreed.  The Anaesthetist listened longer and more thoroughly than either of these guys so I was not bothered by this.

Each of these talks required moving between identical rooms and returning to reception. There was no good reason for shuffling us between the different rooms other than clinician preference. Notes were kept at reception so it wasn't even because the notes or materials were in specific rooms. I was so over it that I felt like asking my daughter for some good tantrum tricks.  I was supposed to have a whole bunch of blood tests, but they are just a formality so I'll do them another day.

As someone who has developed hospital forms, and audited them, I can't think of a solution to this problem.  Everyone wants there own clearly identifiable form, and everyone wants the form filled in using the most current information (usually from the patient).  But there needs to be some consideration of the patient experience as well, and it is hard to have confidence in the system to communicate when information in consecutively completed forms is substantially repeated.

No parking ticket thank goodness - even though I was more than an hour past the maximum time.

I'm still kind of stunned at how much the appointment took out of me.  I found it gruelling, and got very close to tears for reasons I can't quite work out.  I'm glad it is done, and at this stage I have no notice of any more tests/ appointments/ imaging/ procedures.    The surgery is still on for 27 May.

MRI, a surgery date and telling the children

I had an MRI last night.  The hospital has such a backlog in radiology that they are doing imaging in the evenings.  I was hemming and hawing about getting the offered sedation....but they would have had to call the radiology registrar or house surgeon and I decided to just go for it.  I'm a touch claustrophobic, but only if I feel stuck.  You are allowed to take along a disc to play so I went through the paltry options from my iPhone and made an MRI mix.  I decided to make an upbeat, silly mix because maudlin music would be unhelpful.  It never occurred to me that the MRTs would hear it as well.....and I'm quite embarrassed about the first choice, 'Tubthumping' by Chumbawamba.  In my (small) defence I got the melody of this stuck in my head for a couple of days back in my youth, and I thought that it might be nicely distracting.  The MRTs were quite chuffed, they said that Country and Western music was the most common music people brought in to play.

If you have never had and MRI, but have small children I can probably explain the noise to you.  There is an ongoing drill like noise.  It is punctuated by what is best described as a two year old hitting the same electronic keyboard low note rapidly, on full volume, while stuck on 'harpsichord' function. For variety, there is also a noise that sounds like Pacman eating at great speed.

-----

Today I was called with a surgery date.  I'd hoped that it might be six weeks or so, but when the colo-rectal surgeon says four weeks, I guess it is four weeks.  Weirdly enough my first thought was that I would have to cancel my tickets to Handmade 2013.  Going to Handmade has been like my 'Mum continuing education' the last two years so I am disproportionately angry that I will miss it.

I renewed efforts to get the childcare sorted out.  It is amazing how many people say that they will email you straight away, and do not.  My baseline politeness level is dropping.

-----

I used to love getting 'blocked' calls on my cellphone.  It is usually my husband calling from one of his workplaces.  Now it is always the hospital with another appointment.  I had a circular conversation about why 8.50 am appointments on a school day are difficult to make, followed by being offered the same slot a week later.  Sigh.

-----

And for the bit I'm dreading writing.  I sat down with our daughter this evening to let her know what is going on.  We have spent a lot of time thinking what to say and this is what we came up with:

• Mum has a disease in her bowel (bottom).  The disease will get worse if I have no treatment.
• The best treatment is for Mum to have her bowel removed.
• It is a very serious operation.
• Mum will be in hospital for five days (this is when she started crying).
• Dad and Nana will take care of her, and put her to bed. She can call me to say goodnight on the phone.
• We might have a nanny help out a couple of days a week.
• Mum will not be able to lift anything, or drive the car.
• After I get better, I will need another operation.  I will return to the hospital, hopefully for a shorter time.
• I will need to recover again.
• She will continue to go swimming and go to playgroup.
• The operation means Mummy will be sick for a long time, but will be better in the long term.

I did not mention cancer.  As it stands, it is very unlikely that I have cancer as everyone is sure that they got the cancerous lesion.  The CT was clear, and hopefully the MRI is as well.  The surgeon will confirm this during my surgery by sampling lymph nodes. He is 90% sure that there will be no cancer cells there.  As things currently stand, I will not require oncology treatment.  I think it is best not to mention cancer unless it is necessary.  I've discussed this with a few people, and I'm quite comfortable with this decision, there is more likely to be heightened worries and misunderstandings if I tried to explain the current situation more accurately.

----

I'm not sure there is much I can do to prepare my youngest.  I'm focussing on telling her that the hospital is a place for sick people and pointing it out whenever we drive past.