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!