Doing More, Resting Better

On Friday, Patti and I went out in the morning to a couple of shops, mostly just browsing but also some food shopping. When we got home after about an hour, I set to work on clearing a storm water drain that had become clogged with silt. This took over half an hour, and whilst I could not do everything (eg getting the cast iron grill off) I managed to clean out all the sludge. I was of course helped by Zeke and Patti. I felt good doing this, although towards the end my muscles were shaking a bit. I was weary that afternoon and evening, but in a good way.

On Saturday I had another outing where I met up with a couple of friends to help reconstruct/reassemble a miniature stone temple that had been sent over from Nepal (a long unusual story behind this that I won't go into - the point being that I was out engaging in such an activity). I only stayed about an hour, and did not even attempt to lift the heavy stone pieces, but it was good to be there and be involved.

Sunday was even a bigger day. I walked up to an art exhibition which is held annually at my sons's school. I managed to look around all the artwork before walking home. I rested for a short time in the afternoon then was up for the rest of the day. After an extra special visitor, I walked with my family down to the restaurant that made the pineapple fried rice, which was the subject of an earlier post. We enjoyed a relatively quick dinner together (in and out in an hour) then I walked home. That evening some of my muscles were tired, but I did not feel as worn out as I had been on previous occasions, despite this being probably my biggest day yet. My energy levels are definitely on the increase and my weight has stabilsed.

A Good Week

About two weeks before I started my treatment I was given a blood test that, amongst other things, looked at how my liver was functioning. Two weeks after treatment began I had another blood test (with more, of course, to come in the next few weeks and months). Yesterday I saw my specialist, who showed me the results. There were, I think, 5 key indicators listed next to each other. I do not recall their names but have a general idea as to what they were measuring. Now I know that between the first of these blood tests and when my treatment started I had actually got quite a lot worse, so the first test results do not indicate how bad I was. However, what the two test results showed quite clearly is that things are on the improve. Some of the indicators are still a long long way outside normal range, but they have improved significantly from what they were. Furthermore, the nodes in my neck, as assessed by the specialist, are definitely smaller. Somewhat paradoxically, I am starting to get a "tan" - another consequence of the tumours in my body getting destroyed. There are also several other indicators, as assessed by the specialist, that the treatment is working. I knew I was on the mend, but to get it confirmed in this manner ...well it is difficult to explain the combination of emotions that I felt.

I continue to improve, but still have a long way to go. I require lots of rest, but can slowly do more virtually with each passing day. I was out for a walk (one of my longest) earlier in the week and a friend of Zeke's saw me. He had not seen me for a while and did not know anything about what had happened to me. Later that day he asked Zeke what was wrong with me as, to him, I had looked frail. Now I don't think I am that bad, but on reflection, compared to the old me, I probably do look and act a somewhat frail. That will change.

I am beginning to set myself more adventurous little goals. September 4th is Fathers day and I want to take my family to visit both sets of parents. This will be the furthest and longest I have ventured out but it is an outing I am looking forward to. I am also trying to keep much of my day visitor free (with absolutely no offense to any visitor) so that I can, in my own time and with no eye on the clock, venture out for a walk or some other simple outing with Patti. I am also thinking about re-engaging in some of the various meetings, events etc that were part of my normal life. That is still some way off but I can see it coming. I am not sure how to begin this re-engagement though. I do not want to be the centre of attention, and do not really want to discuss myself. However, I will look very different (my weight loss and "tan" two obvious indicators) so there will no doubt be questions and comments, if only from the people that don't know why they haven't seen me for a while. Even those that know why I have been away will want to know how I am. I do not yet have a strategy to deal with my gradual re-engagement but it is something I will be thinking about.

Rechargable Battery

Over the weekend I managed a couple more little outings. On Saturday I went for a walk to a friends place, who lives quite close, and stayed there for about half an hour. Not sure how long the walk actually was, but did go to a shop on the way to get some more vegetables, so I am guessing about 800m or so for the entire journey. It was good to actually go and visit someone for a change. On Sunday, Patti and Xanthe went out and left me watching a replay of the rugby (for non-NZ readers I won't attempt to explain, except to say this is our national game). Got myself some lunch that day (some cold baked chicken, plus some lowfat Pad Thai that someone had given my sister to give to me). I was about to have a bit of a rest and heard our poor cat getting bullied. She ended up being chased up a big tree, well beyond what she was comfortable with. That began a 1-2 hour drama of trying to get her down with ladders etc (with help from Zeke and some neighbours). She eventually got herself down, but not before I was well and truly tired. I did have a rest that afternoon, but not really enough. Later that day the family and I went round to one of our neighbours house for dinner. This was another first for me on my recovery and it was very nice again to be out, although we did not stay for very long (under 2 hours). The two weekend outings were events I could not gave done even a week ago. Today I went on another outing, driving to pick up Zeke's skis, went to the pharmacy and then the supermarket. It seemed easier than the last time I did this journey. I had hoped to be able to go to another shop in another shopping area, but I was beginning to get tired and I have learnt not to push things too hard.

The analogy I have been using to describe myself a bit is that I am like an interesting rechargeable battery. If I get a good nights sleep, then I wake up with fully recharged, with more charge than the previous day. If I have a very quick rest almost straight after breakfast (part of my routine now) then I will last to the early afternoon, and I can venture out further and further in the mornings. To recharge, I try and get a short sleep in the afternoon, and spend some more time just relaxing - something that I have been told (and I know) is so important to my recovery. I am then usually pretty good until bedtime. Food also helps me recharge. If, for any reason, I do not get recharged enough, then I can crash pretty hard, and pretty fast. At these times, by body seems to just stop - my battery is completely flat. Thankfully a short lie down can perk me up for a while, but I do not like getting to the "flat battery" stage. It is interesting (to me at least) that the tiredness I feel is completely different to what I was feeling before I started my treatment - before I could just not do anything, now I get worn out from doing too much. I take this as a good sign.

I was sent some statistics recently showing me how many times this blog had been viewed and how widely it had been viewed across the world. I had no idea at all that there were that many people out there looking at this. To reinforce how wide the readership is, someone emailed to ask whether we skied in Auckland, as I did not say whether Zeke's skis were for snow or water. It is humbling to know I have this wide a readership. As I get stronger and take more time for myself, I seem to be having much less time for any email correspondence, but I still read email at least daily.

My Little Outings

The weather during the first couple of days this week was not very inviting to venture out in, so I remained largely inside. I also had a few visitors on those days, which was nice. On Wednesday Patti had to go up pick up something from Zeke's school, which is literally only 5 minutes walk away. I decided to go with her, and we walked slowly up the little incline to the school, looking at the various house renovations on the way. I interacted with a couple of people (who do not know me) at the school, then we headed home. We walked a little further around our neighbourhood as well. All up we were probably out for 45 minutes. After that I had a wonderful lunch, cooked fresh by Patti as usual, and had a nice sleep. My body felt like it used to feel after a decent training session, and I felt very content and relaxed before falling asleep. It was a long sleep for me, all of about 30 minutes. I rested well for much of the rest of the day, and had good energy levels later in the afternoon and evening.
Today I went on a longer outing. Nothing more than one would describe as doing some chores, but it was a significant step up. With Patti at my side, I drove to a ski shop to drop off Zeke's skis to get tuned for some upcoming ski races trials (he hopes to make his schools ski team). I then drove to a carpark and walked to a bank, pharmacy and camping store before going shopping at the supermarket. I did have to sit down outside the supermarket towards the end, and whilst I did drive home, I was not much help in unloading the car. In the supermarket I took it slow as I looked at lots of food items wondering whether I could eat them not. It is difficult to describe the feelings I experienced during this outing, and I won't attempt to try, but I am sure some can imagine. All up we were probably out for at least 1.5 hours. This is not something I could have done even a week ago. I had another wonderful home cooked lunch (cold baked chicken, beef and tomato ravioli, and some stir fried veggies [with virtually no oil]) and then took my very weary body to bed for a wonderful sleep.
I had an oncologist, who I know, come and visit me earlier this week. He had just heard about my situation. His visit left me very happy. He gently reiterated to Patti and I much of what we already knew. The importance of positive thinking, good nutrition, a calm and stress free environment, focusing on myself and relaxing. I have been a bit of a slow learner in terms of focusing on myself, but as I enter this next stage of my recovery I am getting better at thinking about myself first. With a bit more exercise now, I am relaxing much better too.
As I relax, sleep and go out a bit more I have been spending less time answering emails. I do, however, enjoy those that I have been receiving from far and wide.
I have no idea how this blog reads - it often feels like a bit of a brain dump as I write. I don't think I have ever looked back at the entries and can't see myself doing that. I can only look forward and up. Who knows how fast I will bounce back but I have at least definitely started the bounce.

Two Weeks On

It has been two weeks since I began my treatment and life is definitely on the improve, albeit very slowly. Compared to where I was before all this happened, I would liken myself to a toddler - just beginning to walk around, but still in need of rest and sleep and someone to get me food.
I have been off my bed for most of the day Saturday, and Sunday was even better. I went for 2 short walks (very short- probably less than 400m) over the weekend, neither of which taxed me at all. I also drove myself to get my blood test today. I am experimenting with my own body to see what I can and can't do and eat, but I am a cautious experimenter. I am also craving foods more and more - my current craving is spaghetti and meatballs. Patti cooked some last night and I can't wait for some more. I have even started looking through cookbooks to see what appeals, but I am not yet prepared to experiment with baking or anything with much fat in it (and spicy foods are not even on the radar).
I actually had a wonderful weekend. We had very few visitors and it was very tranquil and peaceful. As much as I have enjoyed seeing people, this change was very nice. I will probably aim to have a few largely visitor-free days over the next little while which will allow me time to begin to reengage with family life and hopefully experience a few small outings with Patti. High on my list is going to the supermarket, strange as that may sound.
Zeke did not compete in his weightlifting this weekend due to some mixup with registration but I would have been able to make it if he had been there.

Highs and a low

I have again woken up and felt like nothing was wrong with me, except I am
a bit slower at things. I imagine that this might be how some much older
people feel. That feeling lasted over an hour today -  the longest yet. I
felt I could do anything, albeit at a slower pace. Over the last few days I
have experienced some new highs but also hit a bit of a low on one
particular day,  Me being me, I carefully analysed what had been so good
and what had been not so good. Although there is a lot going on in my body
that I cannot control, there are things I can control that I am sure do and will make
a huge difference.

Thanks for the great emails
I have been receiving wonderful emails from students, colleagues,
relatives, and from long lost friends from my high school. With all my
visitors and my rest periods I have not been able to reply to them all,
and those that I have managed to reply to were not as long as I would have
liked. But please fabulous writers do know that I value these emails. And
what is it that I value so much about these emails? They talk about life -
what they are doing, how their work is going, what their new Bach
decorations look like, and what they have been doing since my old high
schooldays. They talk about the life I will be coming back to. There may
be an encouraging line or two in the email (which is very nice) but it is
the fact that in the email I am treated like a normal person, colleague,
relative or old friend.

My Aunty and Uncle's visit
I have had some very nice visits recently, one particularly uplifting and
joyous visit from one of my Aunties and Uncles. I had always known my
uncle was a bit of an old car enthusiast and since he retried I think he
is spending almost all his time working with his son on various
restorations. He bought around a range of photos of the various vehicles
he has and what he is working on, and we discussed some of the details of
what he had done and how he had done it.  Those that know me well know
that I am not easily impressed, but in this  case I was just amazed. He
does not have a full mechanical workshop, has no lathe or milling machine
or metal bender, yet he manages to restore WW2 era military vehicles to
original condition on a shoestring budget, and often with nothing more
than a photo of a particular part to go on (sometimes even less than
that).  The skill, talent, innovation and creativity required to do this
just amazes me. He has now just embarked on rebuilding an armored vehicle
- again with none of the heavy lifting tools etc that you would imagine
that you would need. Now I am not really a car enthusiast and I know relatively little about cars but I do admire
such amazing skill, and when I am stronger I am going to go around and see these
vehicles and what he is doing for myself. My Aunt and Uncle's visit was just so great and
I felt full of life - I am sure my eyes were sparkling!  I can't wait to see them again so I can see more, and
ask more on how he is doing particular things. On reflection I don't think
we ever once talked about me, and as far as I was concerned that was just
perfect.

Food cravings!
My lower point this week was an accumulation of a couple of things.  I did
try a pad Thai dish - Patti got it from a lovely little restaurant that we used to go
to. Unfortunately it was a bit oily and my system struggled to cope. I
loved the flavour, so we will just have to experience at home a bit more
how to get some of these delicious flavours in my meals. Someone may yet
find a recipe or place that makes such a dish virtually oil free and then
we will try that as well. My body is craving simples dishes with meat,
veggies, and rice/noodles all mixed together (something  Patti has been
diligently cooking for me almost on command).

What I like to hear and talk about
After a particularly long day I also got to the point of being too tired
to talk about myself anymore. Now I know visitors are concerned for me,
and want to know how I am getting on, how I am feeling etc. I do get it -
believe me I do. I have, up to this point, tried to answer all questions as
freely as possible. But, and now I am being selfish a bit I know,  those
are not conversations I prefer. On reflection,  my best and most joyous
visits, emails etc are about everything and anything except me. My new
approach is that I may talk to visitors about myself but more than likely
I may not. I am a person on the mend, and will update, as best I can via
the blog, how the mending is going. In direct conversation I want to hear
about the life that is going on whilst I am recuperating and the life that
I am coming back to.

Thank you again to all my readers. 

Pineapple Fried Rice

The title of this blog entry may seem strange but it should become clear by the end.
After I posted my last update I explained the "newspaper test" to my son Zeke. I had got to the point of saying that the test was to see if the patients were sitting up reading a newspaper. His very quick witty response was to say "I wonder if it matters if the newspaper is upside down or not". I found that to be particularly funny.
In the last few days I have found myself thinking a lot about food. Patti has been fantastic cooking special meals for me at least twice a day but I wanted to give her a break and I had a particular craving for fried rice. So yesterday Patti went out to a little Malaysian cafe nearby and bought some Pineapple Fried Rice which we shared. It was a simple meal but never before has fried rice tasted so good. The taste remained with me all day and so I got it for lunch again today. Next on my food list is to try some freshly cooked Chicken Pad Thai which may happen Friday. I am surprised how much I am thinking about food now, and although I still suffer from nausea (more in the evenings than the morning) the meds seem to have this under control.
Yesterday I woke up and, for a very short time, felt like nothing was wrong with me at all, except I was slower and weaker. Today was similar. Today is not yet over so I can't say how I will feel by the end yet, but yesterday was my best day for a long time (on a normal scale of 1 to 10 I don't yet rate a 0, but from where I was it is huge).
I test myself just a little more each day and although progress is slow, there is progress. Still lying on my bed a lot of the day but in a very comfortable and relaxed state. My son has another weightlifting competition this weekend and I would love to get to see him compete, so that will be an aim for Saturday. It will be a big step up for me as I have not been out in a while but hopefully I can make it.

The Newspaper Test ; Time to Take Stock

My youngest sister has flown up from Dunedin to stay for the weekend. She is studying at med school down there, having begun this career after having 3 kids and doing numerous other jobs ( including being a high school teacher and an international Nanny). She is doing very well down there and I am very proud of what she has achieved (I am actually very proud of all 3 of my sisters and what they have achieved, having each led very different lives). Anyway, in one of her recent classes at Med School the students were asked how you can tell your patients are doing better. Of course lots of technical answers were offered related to oxygen saturation etc, but the simple answer given by the lecturer was to see if the patients are sitting up reading a newspaper! I find this answer to be particularly interesting and insightful. Very unscientific perhaps, but I understand it well. And for the record I have passed this test, having gone from having no interest in reading anything a week or so ago, to propping myself up on the bed and reading everything written in the newspaper.

Having been on the treatment plan for nearly a week now it is also probably time to take stock a bit of where I am. I have been very focussed on getting to a treatment strategy and not looking too far ahead from that. Now I am actually getting treatment I have begun to assess my own physical condition. I had largely resisted weighing myself or looking at myself too much in the mirror as I knew I was loosing weight. Recently I was described by a visitor who had not seen me for a while as being a bag of bones. So today I weighed myself and I can report that I have lost about 15 kg since the diagnosis, much of which has been muscle mass. It has surprised me how fast the muscle has gone, but someone likened it to how much muscle they lost after having their own leg in a cast for a few weeks. I don't know how long it will take to rebuild my body, but I am thankful that I did have a reasonable muscle base to start with. I think it is good sign that I am now getting hungry whereas before I was mostly forcing myself to eat to get some energy into my body. I am also having a variety of food cravings but am being very careful about what I eat because a number of foods can still be very unsettling. So having passed the newspaper test above I have drawn up a number of small goals in my head to aim for over the next little while. I hope to be spending more time up and around in the house, reading more, and even making the odd small outing (with a particular focus on being able to walk with Xanthe to school again). Small steps I know, but steps in the right direction.
Thank you again to all the readers if this blog.

On the mend - the beginning

It has been only 4 days since I started my treatment but I can feel things are changing in many small ways. Some of this is no doubt mental but I think there are too many little things for it to be just a change in mindset, although that no doubt helps. I am of course still quite weak and still spend a lot of time just lying around. However, those that have been visiting me often can see a change in me for themselves.
I am continually uplifted by the various comments/emails etc I get. I was particularly brightened by a long email from a couple of undergraduate students who had taken the time to write to let me know how the semester and various courses were working out for them and their class. I am also greatly looking forward to seeing photos from the bake-off that is happening next week. It is very humbling being the focus for something like that and I thank all of those involved.

On the family side it is a very busy time for my son Zeke as he works as a stage hand at the school production for the next couple of nights. He is also going to a couple of balls in the next little while which seem to have a whole suite of activities associated with each one (photos, pre-balls, after-balls etc). Xanthe is enjoying her final half year of primary school but she misses having her mum working at the school. Patti had been working in the office at Xanthe's school but has not gone back to work since the school holiday's finished. It is very nice having Patti at home as I recover, and she is doing a great job of cooking me wonderful meals during the day.

Treatment has begun

Today, August 1st, I received my first treatment. It was a special moment as I can now begin my recovery. I am not sure how long it will take, but at least it has finally begun.
The weekend saw more visitors, but many of them had to meet with we whilst I lay on my bed as my energy levels had been decreasing over the last little while.
My kids enjoyed a great weekend. Xanthe got to see more of her relatives and one of her Aunties took her iceskating which she really enjoyed. Zeke has been working hard as a stagehand preparing for the combined Auckland Grammar/Epsom Girls Grammar school production. That all comes to a head this week with evening performances later in the week.

I want to thank you all for the thoughts/txts/emails/prayers etc that have helped get me to this point.