Sunday, 25 September 2011

Same old Same old

It has been a little while since I have updated my blog. There are two reasons for that. The first is that nothing has really changed and the second is that my energy levels are extremely low so it is hard work to do this. At the moment I am lying on my bed with my iPad on my lap typing this up.
The fevers are a daily occurrence now. They come on around 4pm and last through to about 9am. In between those times I swing from being very cold to very hot. Some are much worse than others and I am getting better at controlling the huge temperature fluctuations that I feel. This is all very draining and I find myself very fatigued. I manage to get up for meals (dinner being the hardest one) but don't spend too much other time up. If the weather is nice I sit on the deck for lunch, but I cannot remember the last time I went for any sort of walk and left the property. I am sleeping several times a day - about on a three hour cycle from the end of one sleep to the beginning of the next.
Today I hope to have enough energy to watch the Fiji vz Samoa game. I could only manage half the game last night, and have not watched many others as it is too hard to sit up for that length of time.
So things are not the best at the moment, but it has to be this way. My body is both responding to the medication but also fighting hard to overcome the massive assault it is undergoing.
I have pulled back from having any visitors, except some close family, because I need to rest so much. That will change but in the meantime I thank people for their understanding in this regard.

Monday, 19 September 2011

The Tough Times Continue

I am taking things very much day by day. Things are still a bit tough with almost daily fevers although they don't always come on In the mornings now, but often in the evenings. I am also still very much underpowered as my body is putting so much energy into dealing with the dying tumors. I am getting much better at sleeping during the day, particularly in the mornings when I regularly get 1.5 hours sleep after breakfast. I am largely pain free and only suffer from some discomfort, which is more pronounced as I get tired. My main symptom at the moment is thus fatigue (and fevers) but I have repeatably been told this it to be expected.
I have managed to get up and watch a few world cup games, but cannot stay up to the end of a late game as I am simply too tired by then.
My appetite still remains and I continue to eat well. The evening meal can be a bit harder for me to deal with, largely due to fatigue, but breakfast, lunch and afternoon snacks all go down easily. My weight has yet to go up, but at least it appears to have stopped going down.
My wife has started back at her job, all be it very much part time (just 2 hours each morning, and I sleep a lot of the time she is away). It is important for her to keep her hand in, and it has made Xanthe much happier to have her mum back working at her school again. I make no predictions as to now long this current phase will last and, as I said at the start, I just take things one day at a time. There is a lot of damage that needs repairing, so I just have to be patient.

Wednesday, 14 September 2011

Blood test results

Today I went to see the specialist. He had in front of him 3 new sets of blood test results (plus the earlier ones). Just about everything that is being tracked that was out of range has improved significantly and consistently. Three of the five liver numbers he has been tracking have returned to their normal ranges. There are a couple of other indicators that have moved the wrong way, but that can easilly be explained by the pain weekend I had. So all in all very good news. The specialists departing words were " onwards and upwards". I am still very much underpowered and not as energetic as I was before the pain episode, but each day is a little better for me energy wise. I also wake up most mornings (actually often the very early morning eg 3am) with a fever. These have all gone after my morning sleep, but can be quite draining to go through. All part of the healing process though. I have been finding it tough to feel so weak and underpowered, but it is very good to get reassured by such positive blood test results.

Monday, 12 September 2011

The Journey Continues

Since my last blog post I have been largely pain free. I am of course taking a reasonable base dose of pain medication regularly and I am not sure how much pain I would be in if I stopped taking all that. But I have not had to take any extra pain meds since Thursday. I have a very tender liver where I believe the bleed occurred last weekend, and I have to be quite gentle with myself. I am also finding I am sleeping much more during the day than I have been - on Sunday I slept for over 4 hours in patches and I was very comfortable and relaxed.
I had wanted to go and see my son's weightlifting competition on Saturday, but I was feeling quite weak that day. However, I did force myself to go, and it turned out fine. Patti took a cushion for me to sit on, and I managed to watch Zeke's whole event in relative comfort. I was also surprised that when I got home I was not totally exhausted, like I have been so many other times. In total I was out over 2 hours, my biggest outing since my bad weekend.
I have been surprised at just how exhausted my body can become, and how quickly it can happen. I have, in years gone by, pushed myself pretty hard physically, both through sporting events and doing home renovations. I have worked so hard that it seemed every muscle in my body was aching, cramp was setting in and I was finding it difficult to continue. I have however never gotten to the point where I could not seem to put one foot in front of the other or not stand up on my own. This is what happens to me now, on a rather routine/daily basis. My body is clearly working hard on repairing itself, and I just have to accept my physical limitations at the moment, although this can be very hard.
I have enjoyed a very small number of nice visits over the last little while. As I continue through this low energy phase though it is difficult to commit a time to any particular visit as I could well be sleeping. I have also taken to unplugging the phone when I lay down just to ensure I don't get disturbed.
There are a number of things coming up over the next several weeks that would normally involve me. With the events of last weekend, and knowing that could happen again, I am taking things one day at a time. I cannot predict how long it will be before I can make firmer plans and participate in life more, but I know that day will come. I just have to ride this out and try to stay upbeat during the low times.

Thursday, 8 September 2011

A Tough Week

This week has proven to be quite a tough one, but if I look deeper into what has happened, it is all for the right reasons. After the difficult weekend just gone, I ended up with virtually no energy. I struggled to get off the bed, and it was not until yesterday that I managed to go for a very short walk. However, as my specialist stated, my body is putting a lot of it's resources into rebuilding and repairing the damage left behind as the tumours shrink and die off. It would be nice to be up and about but I have to be more patient while by body is working so hard on rebuilding and repairing. This morning I awoke in some pain so I immediately took my extra pain medication, and have stayed on top of it all day. I have an attitude now when I get something like this of "another one bites the dust". Doesn't make the pain any less intense or anything like that, but it does reinforce to me that this is all healing pain and part of the journey I must travel.
On a different note, I did manage to sit outside and eat lunch the last couple of days. Patti made some wonderful chicken burgers and the two of us just enjoyed the fact that I was up and outside. Apart from one day at the weekend, my appetite has remained and my weight has remained stable for some time now (I am still pretty scarecrow like, but according to the BMI measure, I am in the normal range).
My son is competing at the National weightlifting competition (for high school kids) on Saturday and I would dearly love to go and see him compete. I cannot be confident though that I can make it and I know the cost of pushing myself too hard. I will have to wait to see how I am on Saturday before making any decision.

Monday, 5 September 2011

Speed Bumps

I had been warned there would be a speed bump or two along my road to recovery, and I hit one these last few days. To me it is actually good news, but what it meant was a rather difficult time with pain/sleep/fever, and me failing to get to see my father and father-in-law on Sunday. As I mentioned in my last entry I had even experiencing some new pains in my abdomen. I was quite uncomfortable on Thursday, and woke up on Friday in the same level of discomfort (which is unusual as I normally wake up feeling pretty good). The discomfort moved to pain fairly quickly and I eventually took one of my old pain pills (I had not taken one of these for weeks and had packed them away - I had resisted taking them because it felt like a step backward). I did manage to walk down to my daughter's school performance, but I was clearly in a bit of bother, which I am sure made a number of people seeing me for the first time feel even more concerned. I was driven home by a family friend, and then things began to deteriorate quite rapidly. A gastro surgeon (another family friend) came to see me around 5 pm and he described the most likely explanation for what was going on. I had probably had a bleed in/around the liver as a result of the tumor necrosis - there was a very focal spot for my pain. He explained what would most likely happen if I went to hospital (and there is no doubt I would be admitted if I went to the emergency room). We agreed that if I could hang out at home with the pain meds I had I would be more comfortable in terms of having Patti nearby and being in my own bed. So we decided to plan for the worst (get ready to go to hospital, letting one or two people know that I might be coming) and hope for the best. And if I did need to go then I was to call my surgeon friend immediately, irrespective of the time of night or day.
Thankfully I managed to get ahead of the pain that night, although there was not a lot of sleep. I was told, and can confirm for myself, that can quite difficult to get ahead of pain if you wait too long (as I had done) before starting to take any pain relief. That is a lesson learnt for me.
The next day the pain was properly under control but with so many drugs in my system, I slept for a lot of the day. I did get up for dinner and stayed up a couple of hours. Sunday was pretty good, a bit of pain so just a few of the extra pain meds, which meant I slept a bit more. Today I woke up with a fever (I have had a fever most days as well) but that seems to have gone now. I am really looking forward to my lunch - I had continued to eat during this speed bump but I did eat my normal amount until last night. So far today I have taken none of the extra pain meds as I have not needed them.
I consider all the above good news and just part of the journey I am having to go through. The tumors are breaking down and the body has some work to do get rid of them. I expect this may all happen again at some point. During this speed bump my energy levels never really dropped - I was feeling good within myself. I am not sure when I will be up and about again as I things are tender, but I don't expect it will be too long from now. After all, there are things happening at my kids schools that I want to go and watch.

Thursday, 1 September 2011

More Small Steps Forward

I am quickly losing track of what day it is and what I have been doing as the week progresses as each day I seem to be doing something new and different. Yesterday I went out to another shopping centre with Patti looking for some new clothes for Xanthe. We did not stay too long - I guess we were out less then 1.5 hours. My parents and brother came over for lunch that day as well, which is always nice. The next time I see my parents will be fathers day when I hope to drive to see them - a distance of about 20km. Today I walked down to see a morning movie in Newmarket with Patti and I then walked home again, just in time for another lovely lunch. As usual, I went for a rest after lunch. I have to go for a rest every afternoon, and ideally have a sleep. If I don't get to sleep then it makes the evenings quite tough for me as I get very tired just after dinner. I have never been a good sleeper, but I did manage to sleep this afternoon, although not for very long. There seems to be an unusually large number of helicopters flying around at the moment - I have no idea why, unless it is somehow associated with the world cup. We used to get the odd helicopter flying around, but this is happening every afternoon for extended periods, with many just making repeated wide sweeps around my area. I have become attuned to their noise (even through earplugs) which has just increased the difficulty of me getting to sleep. I am thus working on various relaxation techniques to help me (not that I know too many yet).
I am beginning to experience new pains in my body, but this is all good. As the tumors continue to shrink and die off, there is a lot of "reorganisation" that will be going on inside me. The swelling in the liver, for example, is subsiding, so some pain is to be expected.

My energy levels continue to increase, but a quick morning rest and a much longer afternoon rest are so vital to me.

Tomorrow my daughter has a school production in the afternoon, so I plan to go and see this. I expect to see a number of people there, both teachers and parents, that I know, some of whom have no idea what has happened to me. It will thus be another little test for me, and part of my re-engagement process.