Quite a bit has been happening in the past month.
First up, I went to the Doctor for my 3 month checkup. All OK except that I spoke to him about a persistent scab on my ear. He was 99% positive it was a Basal-cell Carcinoma and referred me to the Plastic Surgery clinic. I have an appointment at the end of this month to deal to it.
Then I tried reducing my Fluox (Prozac) with the approval of my GP. That was interesting, I reduced the dose to half and about a week later I just wanted to sleep all the time. People at work were getting concerned about me, I was really dozy most of the time, so I went back up to the normal amount.
As it was now about 12 months since my last surgery I thought I would be due for another CT scan and catch up with my oncologist, so I sent him an email. He confirmed that that would be a good idea and set it up. A week ago I had the scan and last Friday met with him. I was a bit apprehensive before the meeting, there was a 50% chance the cancer would be back, but no, I am officially clear of cancer at this time. Only another 6 years to go before I am considered cured, but right now it cannot get any better.
I also talked about the fatigue. There does not seem to be any post surgery reason for it and it looks like it may be one of the common side affects of long term Fluox use. He strongly suggested I discuss this with my GP. That will happen next week but in the mean time I am cutting back, but slowly. In Wellington last week I got through two days with no rest in the middle of the day, I am going to try it for the rest of this long weekend as well, it would be great to be back to full strength, and possibly losing some weight as well. My weight has been creeping up, which is great as far as the Doctors are concerned, but not for me.
However there has been a couple of negatives in the past month. Kate Murphy and the support group for colon cancer she led have provided me and many others with invaluable support and help. Kate died on 3rd October after a six month battle with a recurrence. I never met or spoke to her but she will always be a friend.
Thursday, November 8, 2012
Sunday, August 26, 2012
Change Is Good.
This blog post is a bit late, because google broke my blog (and many others as well). All better now though.
3 weeks ago I attended my annual colo-rectal checkup. Prior to that I had blood tests for CEA and Liver Function. I was ready for a flat or rising CEA, the statistics indicate I should be prepared for recurrence. But as usual the outcome was not what Doctor Reeves expected. CEA was down to 1.4 from 1.6 - a very positive result and strongly suggesting no active cancer recurrence. I am booked for another colonoscopy in 4 years, clearly the hospital thinks I am going to be around for at least that time.
What I also had not expected was that my liver function is not good, and the nurse noticed a potential hernia developing around my multiple wound site. The hernia issue may be due to over lifting, I was referred to the orthotic dept for a support belt (due for fitting next week).
The liver function is not too bad, considering the abuse my liver has had, but does not seem to be getting better and may be connected with my ongoing fatigue. I have stopped all alcohol (not that I have had more than the odd beer), increased my water intake, and lifted my walking. In another week or so I will have another set of liver function tests and see if I am making any progress.
I drove to Twizel a couple of months ago for work. I take my own car on these trips so that I can take a break when it suits me. Between Geraldine and Fairlie there is a nice twisty section of road that have always enjoyed, but this time I got thinking "what is I blew up this car and could get a new one, what would it be?" A sporty car, for sure. On the way back, I blew a head gasket (no, I was not trying to), I fixed it up fairly easily and sold it. Now I have one of these. I am looking forward to my next trip to Twizel ;=).
I am really doing well, and feel really good about life most of the time. I do get frustrated because I get fatigued after about 4 hours and need to have a lie down. Stress and conflict really gets to me, I have to be careful at work and need to back out of some situations. But overall life is good, I never thought I would get to be enjoying life so much.
Sunday, July 15, 2012
Getting There
It has been a while since my last post, mostly because cancer is now mostly not a part of my life.
Two weeks ago I had a 3 monthly CEA test, then I had 4 days of panic as I thought the cancer was coming back. But no, my CEA was 1.6 which was the same as last time. That flat result strongly suggests no recurrence, and certainly I am now officially No Evidence of Disease or NED.
In terms of my health, I am mostly feeling pretty good. I still get problems such as chest pain and nausea if I over do it, but I seem to be managing that quite well now. I do have to take a break early afternoon and have a lie down for an hour, and cold really gets to me, but either I am managing the situation better, or I am slowly getting better as I feel I am coping better with normal life.
I am not sure of the cause of the fatigue, it could be my liver rebuilding, in which case it should get slowly better over the next 6 months, or it could be caused by the chemo, in which case there is fair chance I will just have to live with it. I also have persistent random itching, but that may well be my liver rebuilding itself.
Overall I really do feel pretty good with my life. There is no question that the trauma of chemo and surgery was worth it. Without the medical treatment I would be in a really bad way now, or very stable.
Like everyone else, I have no idea what the future holds. If I start thinking statistics and probabilities I can get down, but right now life is great, I am feeling good, and have nothing to worry about that I cannot deal with, so worry is a wasted emotion.
I am eternally grateful for the support I have had, and am still getting, from Teresa, Christchurch Hospital, my employer (Meridian), extended family and friends. Without the contribution from them all I would not be in this great space.
Two weeks ago I had a 3 monthly CEA test, then I had 4 days of panic as I thought the cancer was coming back. But no, my CEA was 1.6 which was the same as last time. That flat result strongly suggests no recurrence, and certainly I am now officially No Evidence of Disease or NED.
In terms of my health, I am mostly feeling pretty good. I still get problems such as chest pain and nausea if I over do it, but I seem to be managing that quite well now. I do have to take a break early afternoon and have a lie down for an hour, and cold really gets to me, but either I am managing the situation better, or I am slowly getting better as I feel I am coping better with normal life.
I am not sure of the cause of the fatigue, it could be my liver rebuilding, in which case it should get slowly better over the next 6 months, or it could be caused by the chemo, in which case there is fair chance I will just have to live with it. I also have persistent random itching, but that may well be my liver rebuilding itself.
Overall I really do feel pretty good with my life. There is no question that the trauma of chemo and surgery was worth it. Without the medical treatment I would be in a really bad way now, or very stable.
Like everyone else, I have no idea what the future holds. If I start thinking statistics and probabilities I can get down, but right now life is great, I am feeling good, and have nothing to worry about that I cannot deal with, so worry is a wasted emotion.
I am eternally grateful for the support I have had, and am still getting, from Teresa, Christchurch Hospital, my employer (Meridian), extended family and friends. Without the contribution from them all I would not be in this great space.
Sunday, April 22, 2012
3 Months Cancer Free
For the past 3 months we have been living life without cancer, which feels really good. I may well not be cured (35% probability according to statistics) but for the past 3 months there has been no hospital visits, no cancer related medication and just getting on with life.
The last blood tests showed a flat CEA (1.6) so I get at least another 3 months cancer free.I still suffer from fatigue, and may forever, apparently. That is a normal side affect of chemo and is not a big deal as far as work (home and employment) is concerned, but for me personally it is quite frustrating. However if I had not gone through the surgery and chemo last year, I would be in a very bad place now, or resting peacefully 6 foot under, so I am quite happy with the treatment.
The blood tests did show a high GGT, I spoke to my GP about it, he said it was not unusual in otherwise healthy patients and nothing to worry about, considering the abuse my liver has had from chemo and surgery.
We are now settling into our new house, way smaller than the old place, but very comfortable for us and thanks to selling at a good price (above valuation) and buying at a good price (below valuation) we are in a comfortable position, come what may.
The whole sale, purchase and move process went well, all on time and under budget, a credit to good project management and two old pedants....
Work is also going well, I have reduced my accountability and am now focused on work which is close to my heart, I really am impressed with the support I have had from Meridian.
No news will be good news, there should be no updates for another 3 months.
The last blood tests showed a flat CEA (1.6) so I get at least another 3 months cancer free.I still suffer from fatigue, and may forever, apparently. That is a normal side affect of chemo and is not a big deal as far as work (home and employment) is concerned, but for me personally it is quite frustrating. However if I had not gone through the surgery and chemo last year, I would be in a very bad place now, or resting peacefully 6 foot under, so I am quite happy with the treatment.
The blood tests did show a high GGT, I spoke to my GP about it, he said it was not unusual in otherwise healthy patients and nothing to worry about, considering the abuse my liver has had from chemo and surgery.
We are now settling into our new house, way smaller than the old place, but very comfortable for us and thanks to selling at a good price (above valuation) and buying at a good price (below valuation) we are in a comfortable position, come what may.
The whole sale, purchase and move process went well, all on time and under budget, a credit to good project management and two old pedants....
Work is also going well, I have reduced my accountability and am now focused on work which is close to my heart, I really am impressed with the support I have had from Meridian.
No news will be good news, there should be no updates for another 3 months.
Sunday, February 19, 2012
How I Really Feel
From feedback to my last post, it is clear that it was not seen as a very positive one. Bear in mind that the whole point of this blog is to record my journey for my records and to give others who go down this path an idea of what to expect.
Since the visit to the oncologist we have decided to take a break from cancer for two months (until my next blood test). This is actually not hard to do as we are in the process of selling our house, I am not actually affected by any cancer and I have challenging work to do at my place of work.
The great majority of the time I feel great, both within me and with life. I am in a pretty good place, possibly better than many others, and surrounded by very supportive people. The only time I feel a bit down is when I am frustrated from lack of energy, however I think I am learning how to deal with that, it may also be getting better.
Finally, I have real proof that I have many more years of life left. Recently I have got very interested in a red Porsche. If that is not a diagnosis of a mid-life crisis I don't know what would be, so I still have around half of my life to run.
Since the visit to the oncologist we have decided to take a break from cancer for two months (until my next blood test). This is actually not hard to do as we are in the process of selling our house, I am not actually affected by any cancer and I have challenging work to do at my place of work.
The great majority of the time I feel great, both within me and with life. I am in a pretty good place, possibly better than many others, and surrounded by very supportive people. The only time I feel a bit down is when I am frustrated from lack of energy, however I think I am learning how to deal with that, it may also be getting better.
Finally, I have real proof that I have many more years of life left. Recently I have got very interested in a red Porsche. If that is not a diagnosis of a mid-life crisis I don't know what would be, so I still have around half of my life to run.
Tuesday, February 7, 2012
All Normal
Teresa and I met with the oncologist today, for my scheduled check up. Prior to going I updated my "symptoms".
Current status:
I was not actually seen by the oncologist, but by one of his medical doctors. She reviewed my case and current situation. My head MRI shows no suspect tumours, and my CEA is 1.5, which she considered normal. Normal next step is a checkup and further CEA test in 3 months, it could be done at the oncology unit, I said I felt it best for my GP to do it, she was quite happy with that.
So all normal, and apparently good - but I don't think so.
There has always been a 65% chance the cancer would reoccur after surgery, so normal is reoccurence. My CEA, while in the normal range has crept up for the 3rd time. The CEA result is closely following the previous levels after my earlier liver surgery, only difference is that this time it did not drop to my normal level of 0.8.
Most likely in 3 months my CEA will be significantly up, in 6 months from now the medical team will be looking at some form of intervention, likely chemo. At this stage it looks like I have 6 months of good living left, before we have to confront some hard decisions again.
This may not sound so good, but it is the normal progression for someone with my cancer. Unfortunately my cancer looks to have mutated (as normal in about 50% of cases) to one which is hard to knock out with surgery and chemo won't kill it.
At the moment I don't feel great about the situation, but I know I will get over it.
Current status:
- Short of breath after moderate exercise - Still there, but way better
- Blue lips fairly frequently - Still noticeable, but I am doing more activity
- Chest pains - Rare now
- Fatigue - A real issue. One hard day of work stuffs me for 2 days, need to take a break after lunch most days to keep functioning
- Joint Pains - Not noticeable
- Not able to concentrate and cannot multi-task at all - Still a real issue. I have to be very careful and aware when driving etc.
- Fingers and toes numb - Fingers 70% better, toes/feet about the same. Cold makes it worse
- Sometimes abdominal tenderness - No longer there.
I was not actually seen by the oncologist, but by one of his medical doctors. She reviewed my case and current situation. My head MRI shows no suspect tumours, and my CEA is 1.5, which she considered normal. Normal next step is a checkup and further CEA test in 3 months, it could be done at the oncology unit, I said I felt it best for my GP to do it, she was quite happy with that.
So all normal, and apparently good - but I don't think so.
There has always been a 65% chance the cancer would reoccur after surgery, so normal is reoccurence. My CEA, while in the normal range has crept up for the 3rd time. The CEA result is closely following the previous levels after my earlier liver surgery, only difference is that this time it did not drop to my normal level of 0.8.
Most likely in 3 months my CEA will be significantly up, in 6 months from now the medical team will be looking at some form of intervention, likely chemo. At this stage it looks like I have 6 months of good living left, before we have to confront some hard decisions again.
This may not sound so good, but it is the normal progression for someone with my cancer. Unfortunately my cancer looks to have mutated (as normal in about 50% of cases) to one which is hard to knock out with surgery and chemo won't kill it.
At the moment I don't feel great about the situation, but I know I will get over it.
Sunday, January 8, 2012
Moving On
I have not updated for a while, mainly because cancer is not right in front of me most of the time - I am getting better.
The visit to the Oncologist on 30th December went fairly well. The course of oral chemo I had finished 2 weeks earlier had been fairly uneventful but towards the end I was getting really tired and needed a rest most afternoons. Blood test results were good, apart from increased bilirubin, this is most likely due to a condition I have, Gilbert's syndrome, and is not a cause for concern.
I took a list of current issues, mostly fairly minor, but I wanted to make sure the Oncologist had a full understanding of where I was at.
The List:
We meet again on 7th February, prior to then I have more blood tests and an MRI scan, just to make sure we are under control.
Since 25th December I have had a brief trip to Auckland, tiled the ensuite bathroom and taken a long trip to Milford Sound and Alexandra to catch up with friends. Over 1600 Km of driving and I got better every day, had a fantastic time.
I am really feeling great and starting to enjoy life, long may it continue.
The visit to the Oncologist on 30th December went fairly well. The course of oral chemo I had finished 2 weeks earlier had been fairly uneventful but towards the end I was getting really tired and needed a rest most afternoons. Blood test results were good, apart from increased bilirubin, this is most likely due to a condition I have, Gilbert's syndrome, and is not a cause for concern.
I took a list of current issues, mostly fairly minor, but I wanted to make sure the Oncologist had a full understanding of where I was at.
The List:
- Short of breath after moderate exercise - but getting better
- Blue lips fairly frequently - resolved by deep breathing
- Chest pains - not strong but brought on by any stress
- Fatigue - normal due to chemo and liver surgery
- Joint Pains - possible side effect from 5FU chemo
- Not able to concentrate and cannot multi-task at all - more than a male thing, and is a concern
- Fingers and toes numb - normal side effect of Oxaliplatin, part of chemo
- Sometimes abdominal tenderness - likely just bits getting back into position.
We meet again on 7th February, prior to then I have more blood tests and an MRI scan, just to make sure we are under control.
Since 25th December I have had a brief trip to Auckland, tiled the ensuite bathroom and taken a long trip to Milford Sound and Alexandra to catch up with friends. Over 1600 Km of driving and I got better every day, had a fantastic time.
I am really feeling great and starting to enjoy life, long may it continue.
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