Status Update

So where are things at the moment - overall, pretty good, progress is happening but it is very slow.  For the last few days I have gone out for shopping and lunch, today I over did it a bit and feel very tired now.

I have had no pain medication for 4-5 days and mostly have no pain at all, unless I am tired, but even then today there is no pain

Right now I have 3 issues:

• I cannot get through the day without at least 2-3 hours rest in the afternoon, even after actually getting up at 10:00 AM in the morning.  I am going to work on this, this week.
• Tingling and numbness in my fingers and toes, mainly toes.  This is most likely neuropathy or nerve damage caused by one of the components of my chemo treatment.  This is quite common, it may be permanent or may resolve over time.  At this stage it is not a big deal. 
• Not sleeping well, if at all, during the night.  This is normal following major surgery and I have experienced it before.  It will resolve shortly so I am not too fussed about it.

This week I will be doing some work from home and as soon as I am able to get through most of the day without a rest I will visit my GP to confirm I am ready to go to work.

Next big day is 1st November.  In the morning I have a chest X-ray followed by a visit to cardio-thoracic outpatients for a checkup.  Then in the afternoon I meet with the oncologist to start to think about further treatment (if any) and the ongoing monitoring strategy.

Anniversary, and Recovery

Last Thursday 13th October was the 5th anniversary of my original colon cancer surgery.  So I have made it as a 5 year survivor.   When I had the original surgery, 5 year survival was a significant milestone, these days 5 years of non-recurrence or NED (No evidence of disease) is much more significant.  Today I am one month NED!

Also last Thursday, I met with my liver consultant, he effectively discharged me but did say that I knew how to get in touch if I ever need to, however in the event of further mets in the liver further surgery would not be expected.  I am comfortable with that, the last 6 months have been hell and I really need to focus on quality of life.  An X-Ray I had prior to the meeting still shows some fluid buildup around my right lung, but this will hopefully clear normally.

Last Wednesday my boss called in for a social visit, that was good and he left a card with mostly helpful and supportive comments from my work mates.  He also gave me a copy of James Patterson's Private London.  I am about 1/3 the way though the book and  it is looking good, but I would have thought that this would be more relevant.

Friday after the two trips to the hospital (X-Ray plus consultant appointment) the day before, I felt quite ill, it would have been the outings plus quite a bit of walking on the day before.

Today (Sunday) I am feeling quite good, we went out to a hardware warehouse and I wandered around a bit, but had to have a wee lie down when I got home, mostly because I want to see the All Blacks vs. Wallabies Rugby World Cup semi-final match tonight.  But most importantly, I have gained weight over the last 3 days - only 0.2 Kg but that is a major change from losing 0.3Kg - 1 Kg a day as I have been since the liver surgery.

I had planned to visit my GP next week to assess my readiness for work, I looked back at my progress last time and found this post which is about the same date relevant to my first liver surgery surgery as now, and it fairly well represents where I am now at, at best.  It was a bit sobering, and realistically my expectation of spending some time at work this week is just plain wrong.

A Long Outpatients Visit

Last Friday afternoon we visited the surgical outpatients clinic for a checkup with the liver surgeon.  I was still not feeling great, and really struggled to walk to the clinic.  As usual we were early and as usual the surgeon saw us early, he seems to mostly work ahead of the clock.

The X-ray from the previous visit to the oncologist showed fluid build up around my right lung.  The X-ray result, plus my general condition was of real concern so I was promptly admitted to the Surgical Assessment and Review Area (SARA), a 12 bed unit attached to one of the surgical wards.  I must admit that I was expecting this and both Teresa and I were quite relieved that things were happening.

Very shortly after being admitted I had a chest and abdomen CT scan.  The scan showed the liver was recovering well but confirmed pleural effusion, a build up of fluid around the lungs, in my case it was a substantial build up around my right lung.  The indicated treatment was to insert a drain and let the fluid out.  Sounds easy so I agreed to the procedure.  This was done on my bed in SARA by a resident doctor assisted by nurses and watched by about 6 other people, including Teresa.  The drain would go in on my back, at the rear of the lung cavity.

I was told that I would get a local anesthetic, which would be the most painful part of the procedure, followed by a numb feeling and much pushing and pulling.  I don't know how many times I have been told that the stinging injection of local would be the most painful part of the procedure, and it was very wrong.  The initial puncture through to the pleural space was OK, but then the "hole" had to be stretched out to allow the drain tube to be inserted.  This proved to be very painful, I think the whole procedure took about 20 minutes.

About 2.5 litres of pinkish fluid was taken out and I was left with a drain attached.  I found my breathing was getting easier as the fluid came out, but there was some pain at the drain site and where my lung was touching the drain tube.  The time would now be about 6:00 PM, it had been an interesting few hours since I came in to the hospital.  Later that night I was moved to a general surgical ward

Over the next couple of days I started to feel much better and on Sunday afternoon I was released from hospital.  The most significant change in my condition was that I now have a real appetite, for the first time since my liver surgery, however my weight has still not stabilised.

Tomorrow morning I have a chest X-ray scheduled, then another follow up meeting with my liver surgeon, hopefully that will be a short out-patients meeting.

I am feeling much better now, but still low on energy.

Yet Another Visit To The Oncologist

First up, how am I feeling?  Not great actually.  Any activity is a bit of a struggle and I have been getting quite frustrated at the inability of my brain and my body to perform.  But I am actually making about the same progress as last time, particularly when it is is considered that I went into this surgery only a few weeks after the lung surgery, and still affected by the chemotherapy.  There is also another reson, that I found out about today......

Getting to the appointment was a bit of a struggle, I had to get up and shower at the ungodly hour of 8:45 AM.  We took a taxi due to the cold wet weather and the parking problems that continue to exist around the hospital post earthquake.

I had expected the meeting to discuss future treatment options, most likely based on chemo, but Dean (the oncologist) would have none of that.  He said he wanted to think of that in at least a month, once I was in a better stage of recovery.  I was very happy to hear that, I was dreading trying to work out the options and come up with the best result, but he seems really focused on my personal well being, rather than wanting to get his chemistry set out ASAP.

He also gave me a checkup and found that I have significant fluid build up in my right lung.  While is is a fairly normal consequence of my lung surgery, it will be setting my recovery back.  He scheduled a chest X-Ray once I had left him; no doubt the results will be discussed when I meet my liver surgeon for his checkup on Friday.

The oncologist also requested a battery of blood tests, but no CEA.  I asked for a CEA, he added it, but he was not particularly happy about requesting it.  He said that the outcome of the CEA test is irrelevant at this stage and there is no point thinking about, I said I wanted it as I had one about the same time after my other liver surgey and want to compare the results.

On the way out I had the chest X-Ray and blood tests, then got home at 11:45 AM, I was absolutely buggered and had quite a long sleep after lunch.  Feeling OK now after a good sized dinner, but looking forward to sleep tonight.