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.