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!

One month out of hospital!

I'm thrilled that I have been home for four weeks. Home feels normal and the girls are becoming less concerned that I will just disappear back to the hospital.  I'm also less convinced that I will have to return to hospital!

The nurses visit daily to change the bandages on my stomach.  The wound has slowly been shrinking (both in depth and width).  I've learnt a lot of unpleasant wound related words: 'dehiscence' and 'slough' are two rather gross ones.  I've had fun calculating the cost of my treatment:

• $1000 per inpatient day
• $1000 per trip to theatre
• $80 per nurse home visit
• $100 per day for vac pump rental
• $15 per day for wound dressings, creams, medications and other equipment
• $160 per home infusion of antibiotics

I might come up with a total one day!  Thank goodness for state funded medical treatment.

I am very slowly regaining my strength.  I can't walk very far - about 200m one way at the moment, but I'm getting stronger each day.  I can walk far enough to get to second hand books and magazines, so figure my basic needs are being met!  I am BORED.  Until the start of this week I've not felt like doing much except read or watch TV (TV box sets were invented for the ill/ rehabilitating person).  I planned out the summer garden and ordered some seeds to fill in one afternoon.

I see the surgeon this coming week for what I assume is the last time.  I think we have covered off most topics related to recovery.  I'm still stunned that he brought up the topic of having plastic surgery on my stomach later on - but now that the wounds are getting close to being closed I can see his point - my stomach is lumpy and bumpy.  I'm still not keen to jump into more stomach surgery anytime soon.  I'm hoping to get his blessing to drive again.  Hopefully in a few more weeks I'll be up to doing the school run again.

I am annoyed by my diet and bowels on a daily basis - until I look back and realise that I've made a lot of progress in this area too. With medication I don't need to go to the toilet too frequently.  Gas no longer churns painfully through my bowel.  Food still travels very quickly through my system and it is this that I have a long wait to resolve.  I've started trying other food (basically because I need fresh vegetables).  Having not eaten onion or garlic for a long time it tastes ridiculously strong to me.  Hopefully in the next month or so I can start eating the skin of vegetables again.  I experimentally tried a small amount of fizzy drink with most of the bubbles stirred out.  Mistake.  Since flat soft drinks taste disgusting I think it will be a very long time before a Diet Coke crosses these lips!

This entire experience still feels unreal - the fact that I had cancer is strange.  I jokingly used the term 'cancer survivor' the other day but don't really feel entitled to it - I barely had cancer long enough to get my head around saying 'I have cancer.'  I am absolutely floored by the day to day courage of people who have cancer and experience months or years of treatment.  A lot of people with bowel cancer face surgery, radiotherapy and chemotherapy.  I can't imagine getting to the end of recovering from this surgery knowing that a gruelling course of chemo was ahead.

The very cold day.

I'm at home today and the temptation to drop by and hang at the hospital is high.  It is freezing cold here!

I did get my vacuum dressing off last Tuesday.  It is so much easier walking around with lots of bandages on your stomach rather than rock hard foam and a tube attached to a noisy machine.  The surgeon seemed pleased with my progress and we grilled him with many questions.  I also learnt that I have absolutely no rectum. This came as a surprise because we had assumed that only the portion where the cancer was had been removed.  No large colon, no rectum. This vastly simplifies my ongoing monitoring - I will probably only need an annual blood test to check my CEA (a cancer marker) and perhaps some kind of small test involving checking my anus?  But obviously no more colonoscopies and perhaps not even a sigmoidoscopy.  There is nothing to check.

The following day the antibiotics were discontinued and the PIC line removed from my arm.  I officially have no tubes in me!  I was so tempted to ask them to ditch the last batch of antibiotics but they told me that each tube cost about $160 and were personalised to me (so not returnable).  It made it easier to swallow that down and just take the last batch.

I feel a lot more human.

I'm just a bit weak still.  I can now get through most days without needing a nap. I still need to rest though, particularly if the girls are around. I have a little trouble sleeping and I need to take pain medication overnight or can get too uncomfortable to sleep. I have, overall, dramatically dropped the amount of pain medication I'm taking and have now had two wound changes narcotic-free!  The nurses are very gentle, and to stop my skin getting destroyed from all these wound changes they use this awesome stuff that dissolves the 'sticky' on plasters.  It is a fantastic invention.

Now the bit of my recovery that is less obvious but very time consuming for me.  My small bowel needs to get used to acting like a long bowel. Much like toilet training toddlers, I need to relearn what the various bowel sensations all mean.  At the moment it is typical to need to use the toilet around 10+ times a day.  This should settle down slowly.  Also, (and avert your eyes if you are delicate) I can't currently tell the difference between a bowel motion coming and gas wanting to pass so I have to go to the toilet in either case.  Gas travelling through my small bowel is quite sore in places - very churny.  I think it is worse over some of the surgical joins.  This should settle down, but some nights it is hard to sit still.  I've been given some medications, which help a bit.  I'm just worried about the long term situation.  There should be big improvement over six months, with the situation at one year likely to be permanent.  During this time I will also try and increase my diet - the 'low residue' diet continues to bore me!

So unless something dramatic happens I think that the blog updates will wind down a lot.  I don't think that there is a lot of great interest in returning bowel function, slowly increasing my physical strength etc.  I will though post when I can drive, and when my wound is finally healed!  I'm looking forward to that time.

Home

Home is going well. My day has a predictable routine of meals, pain pills, antibiotics (district nurse or Vincent) and naps. I think I'm getting a little stronger, but still got puffed showering and dressing the other day.

Today I return to my nemesis (the hospital) for two clinic appointments. This morning I'll see the surgeons to check my wound. I'm hopeful that the vacuum pump can come off. I'm really sick of dragging this thing around. Between my central wound and the current wound I've been dragging around vacuum pumps for three or four weeks.

In the afternoon I'm seeing the infectious disease team to see if I can stop taking my antibiotics. Having a 24 hour bottle of antibiotics infusing into my arm (in addition to carrying around the pump) is a real downer.

Lets hope for relief from one or both of my attachments!

The viewing gallery - watching the district nurse change my wound dressing!

Hospital in the home

It takes a lot. A lot to get me home. I'd bet that I'd be in hospital still if it wasn't for the fact that my infected wound is now less interesting to the medical team. From a nursing perspective, being in hospital makes sense. 

The district nurse couldn't come until the pharmacy couriered over my antibiotics (specially made up in Auckland and sent to the hospital).

When she arrived she told me she was further delayed due to trying to understand the discharge info and having to create a file with sections for my paperwork.

Then she bought in the stuff

This excludes the chilli bin of vacuum infusers containing vancymicin (it infuses over 24 hours) and the bag of vials with my other antibiotic.

The appointment took an hour, tomorrow it will probably take longer as I have a dreaded wound change.

The nurse is already trying to get #1 husband to administer the drugs one day in the weekend....apparently patients are often taught how to do this when it is a regular occurrence.

My uncool 24/7 companions. 

The house looks like a fricken hospital. 

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The children are getting used to me being at home. The youngest though felt like checking around 2:30am!

Home.

There is not much more to say. It is amazing reading my discharge summary how sick I was a week ago. The wound on my stomach was seriously infected. In order to get home I have had to agree to some hardware...

I have a diagonal body bag containing a 24 hour continuous antibiotic infusion. It will be replaced each day by a district nurse.

I still have the vacuum pump on my stomach which seems to me to be producing less fluid. The swelling and redness has diminished. I will have the wound changed by the district nurse, then in clinic over the next week.

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!