You may recall that towards the beginning of this journey SandD kindly gave me their tropical fish and tank.
The fish have taken residence in the living room in what is a focal place for the family and they settled in well.
Amongst the fish there was a group of three guppies who swam around together, but three became a crowd and it looked like one was getting constantly chased away. The poor soul seemed to be being bullied.
On our return from holiday the "bullied" fish had sadly passed away.
This evening (a couple of weeks later) our son "The Huffty" told Kitten that he had good news. Apparently the fish had not died but had shrunk. Naturally we were little dismissive of this claim but found not one but two "shrunken" fish. Shrunken to a child's eyes but little babies to our grown up eyes.
My parents popped up yesterday and were here to witness the introduction of the shrunken fish. At one point in the discussion my mother turned to me and said "It hasn't really shrunk, has it?" Of course she realised what she had said immediately; especially when I gave her one of those looks.
It was good to see the parents and the Enochians popped over to make it a full session of my immediate family.
My parents are on a "flying visit" and will be going home today. They have come up to show some support and it is appreciated. We haven't seen the Enochians for a while so it was good to catch up.
Wednesday 30 June 2010
Tuesday 29 June 2010
A Little Insight
Over the last few days we have had two meetings at the Marsden. The first, with the surgeon on Friday, was downbeat and then the meeting on Monday steadied the ship. However, Kitten is still all at sea and not enjoying the wait until next Monday.
Today I received an appointment time for the CT Scan, which will be at 3.55pm on Thursday. This will be compared to the scan on the 3rd of June and will be discussed by the Multi-Disciplinary team on Friday afternoon.
After the meetings we recieve a copy of any written communications and, on this occasion, the surgeon wrote to the head of oncology. The following shows an extract from the letter. The tone of the letter conveys the surgeon's message of the meeting, so I thought it would give an insight into "come down" from being eager and prepared for surgery in two weeks time. .
The letter goes on to request a CT Scan, but the above conveys the surgeon's message
Monday 28 June 2010
A Change of Mood
Personally, I feel much more comfortable after today's meeting.
The inference is that there is only a deviation from a curative approach if the illness has shown signs of moving outside the confines of control and the net of suggested control has widened.
Despite the fact that a combination of chemotherapy and radiotherapy would be "heavy artillery", I feel that if there is any doubt about surgery now then that would be my preferred option. It won't be a pleasant option but in some situations it is necessary to fight fire with fire. I haven't suffered enormously with chemotherapy and I am willing to take on real discomfort for the potential of a real result, though I would have preferred the easier option that seemed to exist a few days ago
Kitten is more apprehensive than me and does not enjoy the wait for a CT scan that has not taken place yet. The fact that the team will discuss my case on Friday afternoon but we will not be advised until Monday afternoon makes it more difficult for her. Of course, I will be apprehensive too, but whilst my optimism has returned I am always aware that there is no guarantee of a happy ending. It is this awareness that keeps me focused, keeps me moving forward and means that the environment can't keep me down for anything other than short periods. Bad moments are like "going to the well" to draw energy.
My calf strain is pretty much under control and there was a visit to the Mad Canadian for treatment before my visit to the Marsden. Apart from treating my leg, he is very helpful in enabling me to retain my focus. He was generous with his time in working on the tinnitus and some routine maintenance of the neck. My leg is feeling quite good now and so I will get back in the gym, though I will avoid running. If radiotherapy is part of the equation then I think it unlikely that I will be seeing to much of the gym in the near future but I plan to keep as active as possible in any eventuality.
The blogs I have written over the last few days convey the uncertainty that can arise if you are in this situation. Events having taken me to seeming certainty of surgery to the potential of only palliative care in very little time. It is nigh on impossible to micro manage the mood, so that it doesn't dip and it is natural to feel the uncertainty, but it is also helpful to feel more comfortable ground.
The inference is that there is only a deviation from a curative approach if the illness has shown signs of moving outside the confines of control and the net of suggested control has widened.
Despite the fact that a combination of chemotherapy and radiotherapy would be "heavy artillery", I feel that if there is any doubt about surgery now then that would be my preferred option. It won't be a pleasant option but in some situations it is necessary to fight fire with fire. I haven't suffered enormously with chemotherapy and I am willing to take on real discomfort for the potential of a real result, though I would have preferred the easier option that seemed to exist a few days ago
Kitten is more apprehensive than me and does not enjoy the wait for a CT scan that has not taken place yet. The fact that the team will discuss my case on Friday afternoon but we will not be advised until Monday afternoon makes it more difficult for her. Of course, I will be apprehensive too, but whilst my optimism has returned I am always aware that there is no guarantee of a happy ending. It is this awareness that keeps me focused, keeps me moving forward and means that the environment can't keep me down for anything other than short periods. Bad moments are like "going to the well" to draw energy.
My calf strain is pretty much under control and there was a visit to the Mad Canadian for treatment before my visit to the Marsden. Apart from treating my leg, he is very helpful in enabling me to retain my focus. He was generous with his time in working on the tinnitus and some routine maintenance of the neck. My leg is feeling quite good now and so I will get back in the gym, though I will avoid running. If radiotherapy is part of the equation then I think it unlikely that I will be seeing to much of the gym in the near future but I plan to keep as active as possible in any eventuality.
The blogs I have written over the last few days convey the uncertainty that can arise if you are in this situation. Events having taken me to seeming certainty of surgery to the potential of only palliative care in very little time. It is nigh on impossible to micro manage the mood, so that it doesn't dip and it is natural to feel the uncertainty, but it is also helpful to feel more comfortable ground.
A Nervous Wait
Today's appointment was not as revealing as I may have hoped but it did clarify some important issues.
Nothing can be decided until I have had another CT Scan. That will take place before the Marsden have their weekly "MDT" (Multi-Disciplinary Team) meeting on Friday afternoon. My case will be discussed then and an pathway forward will be established.
The CT scan will reveal if any secondary cancer has developed. If that were the case then treatment will be palliative rather than cure focused. The same might be said if the tumour has grown significantly since the chemotherapy finished and the last CT scan was taken on 3rd June.
Assuming that the tumour is still local and hasn't grown too much there will still be the objective of operating to completely remove the cancer. One of the following treatments will then be employed
Option 2 would represent the need for more aggressive treatment to get the cancer under control
Option 3 would mean that the oncology team had discussed the situation with the surgeon and it has been decided that operating now is viable.
The point about option 3 is that the oncology team do seem to have a higher opinion of how successful the chemotherapy has been than the surgeon has.
Nothing can be decided until I have had another CT Scan. That will take place before the Marsden have their weekly "MDT" (Multi-Disciplinary Team) meeting on Friday afternoon. My case will be discussed then and an pathway forward will be established.
The CT scan will reveal if any secondary cancer has developed. If that were the case then treatment will be palliative rather than cure focused. The same might be said if the tumour has grown significantly since the chemotherapy finished and the last CT scan was taken on 3rd June.
Assuming that the tumour is still local and hasn't grown too much there will still be the objective of operating to completely remove the cancer. One of the following treatments will then be employed
- More chemotherapy
- A combination of radiotherapy and chemotherapy
- Surgery
Option 2 would represent the need for more aggressive treatment to get the cancer under control
Option 3 would mean that the oncology team had discussed the situation with the surgeon and it has been decided that operating now is viable.
The point about option 3 is that the oncology team do seem to have a higher opinion of how successful the chemotherapy has been than the surgeon has.
Sunday 27 June 2010
Steadying the Ship
I have already blogged on Friday's meeting with the surgeon but I didn't mention the following, which gives an insight into our thoughts before tomorrow's meeting with the oncologist.
When the surgeon was explaining his reluctance to go ahead with the planned operation, Kitten asked the question "Have you had good results with many people who have been in the is situation?"
This question had to be put into the context that the surgeon is one of the very best in his field.
The answer was "No". There was an example of one patient where he had been able to increase the patient's life expectancy but not one of cure.
It should be remembered that he considered me to be borderline in the first place back in February.
That is the backdrop against which we are operating tomorrow.
Kitten and I have discussed the situation today. I think that we needed yesterday to let the dust settle. I would prefer any pathway, regardless of degree of aggression or risk, that would put me in a position where we can get this thing under control with the possibility of its complete removal. Whether that option is open is another matter.
We have to be guided by expert opinion but, needless to say, I have done a degree of homework and will question and probe as I see fit (as usual).
Times like these are real crossroads in lives and the fact that this is physical is not different from major events in others lives, regardless of the event's orientation. I will approach it with a cool head and let my heart guide my reaction.
When the surgeon was explaining his reluctance to go ahead with the planned operation, Kitten asked the question "Have you had good results with many people who have been in the is situation?"
This question had to be put into the context that the surgeon is one of the very best in his field.
The answer was "No". There was an example of one patient where he had been able to increase the patient's life expectancy but not one of cure.
It should be remembered that he considered me to be borderline in the first place back in February.
That is the backdrop against which we are operating tomorrow.
Kitten and I have discussed the situation today. I think that we needed yesterday to let the dust settle. I would prefer any pathway, regardless of degree of aggression or risk, that would put me in a position where we can get this thing under control with the possibility of its complete removal. Whether that option is open is another matter.
We have to be guided by expert opinion but, needless to say, I have done a degree of homework and will question and probe as I see fit (as usual).
Times like these are real crossroads in lives and the fact that this is physical is not different from major events in others lives, regardless of the event's orientation. I will approach it with a cool head and let my heart guide my reaction.
Race for Life
Today was "Race for Life" day on the Epsom Downs.
This is an event which Kitten and Boogle, Sushi, Saucy Sue and Banana had planned to do since January and this being before any awareness of my illness.
Unfortunately Saucy Sue and her daughter "Banana" had to pull out. Our thoughts are with them as they have been having a difficult time of late.
So it was off to Epsom Downs on a beautiful but ferociously hot day. The 5K event can be run, jogged or walked and our super fit bunnies were walking. They did a marvellous job of raising a substantial amount for Cancer Research UK. I am not sure what the final total is but I believe it to be in the region between 800 and 900 pounds.
Well done girls.
In the spirit of anonimity and of the blog here is a picture taken after the event. I can assure you that in real life the participant's head is well and truly on their shoulders.
Unbelievably, considering today's heat, a couple of wags did the course in pantomime horse costume.
Apart from being there to cheer on the girls, my best moment was catching Notoplip in a moment of concentration. Whilst leaning down over the pushchair tending to his youngest the first of the runners were coming up the finishing straight. So I said, "quick, look. Here comes Paula Radcliffe". He stood up quickly and said "Where, where", before realising that I had caught him off-guard. A cracker. Needless to say that he got me back later when we were on our way to watch the England v Germany game.
This is an event which Kitten and Boogle, Sushi, Saucy Sue and Banana had planned to do since January and this being before any awareness of my illness.
Unfortunately Saucy Sue and her daughter "Banana" had to pull out. Our thoughts are with them as they have been having a difficult time of late.
So it was off to Epsom Downs on a beautiful but ferociously hot day. The 5K event can be run, jogged or walked and our super fit bunnies were walking. They did a marvellous job of raising a substantial amount for Cancer Research UK. I am not sure what the final total is but I believe it to be in the region between 800 and 900 pounds.
Well done girls.
In the spirit of anonimity and of the blog here is a picture taken after the event. I can assure you that in real life the participant's head is well and truly on their shoulders.
Unbelievably, considering today's heat, a couple of wags did the course in pantomime horse costume.
Apart from being there to cheer on the girls, my best moment was catching Notoplip in a moment of concentration. Whilst leaning down over the pushchair tending to his youngest the first of the runners were coming up the finishing straight. So I said, "quick, look. Here comes Paula Radcliffe". He stood up quickly and said "Where, where", before realising that I had caught him off-guard. A cracker. Needless to say that he got me back later when we were on our way to watch the England v Germany game.
Saturday 26 June 2010
Getting a Grip
Kitten and I have been coming to terms with yesterday's news.
Now that I am not in a good enough position to continue with the protocol treatment we have to hope that being in the hands of one of the world's best oncology teams will pay dividends.
I posed the question on Friday as to whether the trial drug bevacizumab may have been responsible for the tumour's rebound as this is a view that seems to be gaining credence in the treatment of other cancers. It is something to consider in greater detail when meeting the oncologist rather than the surgeon though.
The main thing now is to steady the ship. We have gone from having the security of an operation date and a clear channel ahead to not knowing how the cancer will treated and whether this is any likelihood of a complete cure.
I've always found that a clear head is best in difficult situations and the blog helps in that respect. Naturally, I have been talking with people who are close to me since yesterday but the blog is carthatic in helping me to consolidate what I am thinking and feelling.
Potentially disastrous events can often turn out to be more trivial or to be of benefit once the dust settles. We will have a better picture on Monday, but there will still be uncertainty. Even if we go the additonal chemotherapy route we will not know whether it has worked until it finishes and we see whether the tumour rebounds again.
I'm not flapping but it is difficult to avoid the same emotions surfacing as when I was first diagnosed, in relation to my children.
It is unlikely that anyone cruises through cancer, as it is a journey which is always destined to leave an indelible footprint. I don't mind a difficult ride, just so long as I get the right result.
A busy day tomorrow with the Race for Life event, England v Germany and Argentina v Mexico will make the time pass quickly before our meeting (not that I expect Kitten to enjoy the last two events!)
Now that I am not in a good enough position to continue with the protocol treatment we have to hope that being in the hands of one of the world's best oncology teams will pay dividends.
I posed the question on Friday as to whether the trial drug bevacizumab may have been responsible for the tumour's rebound as this is a view that seems to be gaining credence in the treatment of other cancers. It is something to consider in greater detail when meeting the oncologist rather than the surgeon though.
The main thing now is to steady the ship. We have gone from having the security of an operation date and a clear channel ahead to not knowing how the cancer will treated and whether this is any likelihood of a complete cure.
I've always found that a clear head is best in difficult situations and the blog helps in that respect. Naturally, I have been talking with people who are close to me since yesterday but the blog is carthatic in helping me to consolidate what I am thinking and feelling.
Potentially disastrous events can often turn out to be more trivial or to be of benefit once the dust settles. We will have a better picture on Monday, but there will still be uncertainty. Even if we go the additonal chemotherapy route we will not know whether it has worked until it finishes and we see whether the tumour rebounds again.
I'm not flapping but it is difficult to avoid the same emotions surfacing as when I was first diagnosed, in relation to my children.
It is unlikely that anyone cruises through cancer, as it is a journey which is always destined to leave an indelible footprint. I don't mind a difficult ride, just so long as I get the right result.
A busy day tomorrow with the Race for Life event, England v Germany and Argentina v Mexico will make the time pass quickly before our meeting (not that I expect Kitten to enjoy the last two events!)
Friday 25 June 2010
Bad News but Mixed Blessings
I attended my impromptu appointment at the Marsden this afternoon and the news was not good, so it is a good job that I am in the relaxed mood that I described earlier today.
I have mentioned that since finishing chemotherapy it has become harder for me to eat again and I discussed this with the oncology team on Monday.
This was fed back to the surgeon (in what seems to have been a slightly exaggerated manner) and, allied with the results of recent blood tests, it seems that the cancer is fighting back now that it has breathing space from the onslaught of chemotherapy. This is an unusual situation and shows the voracity and volatility of my cancer.
I have said in the past that when I was diagnosed I was borderline operable. First there was the worry that there was secondary cancer but also there is a significant amount of regional metastases i.e. bits of tumour outside oesophagus but not in remote parts of the body. This was highlighted when I had the endoscopic ultrasound report and explains why I was keen to get into theatre.
As a borderline operable case it was a concern to me that chemotherapy did a good job because long term survival is only likely with complete removal of the cancer.
The aim of the chemotherapy was to shrink the tumour, hopefully get rid of some of the regional "flotsam" and generally clear some of the little bits of cancer floating around in the bloodstream. Prevous discussions about the chemotherapy results were optimistic despite there not being any downward reclassification of the cancer.
My appointment today was with the main man on the Surgical team. Whilst the chemotherapy has been successful, to a degree, he was concerned about the results when taking into account the difficulties eating and also the tumour counts shown by the blood tests.
It will come as no surprise to some that we seem to have a "volatile fella" on our hands. The tumour counts fell drastically during treatments and now they are rebounding drastically.
So here's the issue; if the surgeon goes ahead with the operation as per the schedule then there is a real risk that cancer could fight back significantly between the operation and the resumption of chemotherapy 10 weeks later (the body needs this time after surgery to build its strength before chemotherapy). Also, given that the reduction in the cancer is not as much as we might have hoped for the surgeon may find it difficult to remove all of it. It is the surgeon's job to ensure that all of visible cancer is removed and the microscopic bits are dealt with by the chemotherapy.
So, the suggestion is that we need to go back to the head oncologist and see whether further cycles of chemotherapy are considered a viable path before surgery. We know that
If further chemotherapy is considered the way forward then it is likely to start next week and may be another 3 or 4 cycles before surgery. There will also be another CT Scan to measure the growth of the tumour since the end of chemotherapy. If we follow that route and the tumour still can't be held in abeyance then there are real problems. Similarly, if the oncologist does not feel that additional chemotherapy is the right route then there is also trouble ahead.
So what's the good news? The good news is that the problem has been discovered now rather than after surgery. It is a combination of factors that have caused the surgeon to question the performance since the end of chemotherapy not least the fact that my oncology appointment was delayed due to our and the oncologist's holidays. If I had the oncology appointment immediately after the end of chemotherapy then the eating difficulties and the tumour counts would not have been so pronounced and may have passed under the radar. Discovering a re-ignition of the tumour after surgery would have been a hammer blow and at least that has been avoided.
Kitten was upset and described it as the worst moment since I received news of the diagnosis, which is probably true. I have worked hard to take charge of my mental and emotional state and that has put me in a good place which, I believe, will help us approach this next phase in a more relaxed and collective way. That means that I will be less self-absorbed.
Another curry with Sushi and Notoplip was a good instant fix and we will move forward to Monday with an open mind and hopeful that the oncologist can see a clear path forward.
I have mentioned that since finishing chemotherapy it has become harder for me to eat again and I discussed this with the oncology team on Monday.
This was fed back to the surgeon (in what seems to have been a slightly exaggerated manner) and, allied with the results of recent blood tests, it seems that the cancer is fighting back now that it has breathing space from the onslaught of chemotherapy. This is an unusual situation and shows the voracity and volatility of my cancer.
I have said in the past that when I was diagnosed I was borderline operable. First there was the worry that there was secondary cancer but also there is a significant amount of regional metastases i.e. bits of tumour outside oesophagus but not in remote parts of the body. This was highlighted when I had the endoscopic ultrasound report and explains why I was keen to get into theatre.
As a borderline operable case it was a concern to me that chemotherapy did a good job because long term survival is only likely with complete removal of the cancer.
The aim of the chemotherapy was to shrink the tumour, hopefully get rid of some of the regional "flotsam" and generally clear some of the little bits of cancer floating around in the bloodstream. Prevous discussions about the chemotherapy results were optimistic despite there not being any downward reclassification of the cancer.
My appointment today was with the main man on the Surgical team. Whilst the chemotherapy has been successful, to a degree, he was concerned about the results when taking into account the difficulties eating and also the tumour counts shown by the blood tests.
It will come as no surprise to some that we seem to have a "volatile fella" on our hands. The tumour counts fell drastically during treatments and now they are rebounding drastically.
So here's the issue; if the surgeon goes ahead with the operation as per the schedule then there is a real risk that cancer could fight back significantly between the operation and the resumption of chemotherapy 10 weeks later (the body needs this time after surgery to build its strength before chemotherapy). Also, given that the reduction in the cancer is not as much as we might have hoped for the surgeon may find it difficult to remove all of it. It is the surgeon's job to ensure that all of visible cancer is removed and the microscopic bits are dealt with by the chemotherapy.
So, the suggestion is that we need to go back to the head oncologist and see whether further cycles of chemotherapy are considered a viable path before surgery. We know that
- The tumour responds to chemotherapy
- The tumour must be contained in order for me to have a fighting chance of successful surgery and a good long term outlook
- I have ridden the initial cycles of chemotherapy well and am of an age where we can be aggressive in the treatment
If further chemotherapy is considered the way forward then it is likely to start next week and may be another 3 or 4 cycles before surgery. There will also be another CT Scan to measure the growth of the tumour since the end of chemotherapy. If we follow that route and the tumour still can't be held in abeyance then there are real problems. Similarly, if the oncologist does not feel that additional chemotherapy is the right route then there is also trouble ahead.
So what's the good news? The good news is that the problem has been discovered now rather than after surgery. It is a combination of factors that have caused the surgeon to question the performance since the end of chemotherapy not least the fact that my oncology appointment was delayed due to our and the oncologist's holidays. If I had the oncology appointment immediately after the end of chemotherapy then the eating difficulties and the tumour counts would not have been so pronounced and may have passed under the radar. Discovering a re-ignition of the tumour after surgery would have been a hammer blow and at least that has been avoided.
Kitten was upset and described it as the worst moment since I received news of the diagnosis, which is probably true. I have worked hard to take charge of my mental and emotional state and that has put me in a good place which, I believe, will help us approach this next phase in a more relaxed and collective way. That means that I will be less self-absorbed.
Another curry with Sushi and Notoplip was a good instant fix and we will move forward to Monday with an open mind and hopeful that the oncologist can see a clear path forward.
Nice and Relaxed
My last post was about fear, primarily because it is a topic that raises it head as a question when I talk with people.
In truth I am probably nore relaxed now than I have been at any part of the process. No-one in their right mind would look forward to a heavy duty operation on physical level but it means that we remove all the significant bits of the cancer and then let the chemotherapy do the rest.
The World Cup is a great distraction and Sunday will be busy as not only are England playing but Kitten, Boogle, Sushi, Saucy Sue and Banana are participating in the Cancer Research "Race for Life". I will be going to wait at the finish line to congratulate them when they complete the course but will obviously have one eye on the clock for the beginning of the match! They have collected a tidy sum in sponsorship.
This morning I had a call from the Marsden to ask me to attend the surgeon's clinic this afternoon at 4pm and also a letter regarding admission for surgery. It seems that the admission will be on Monday 12th rather than Tuesday 13th (as I was advised verbally).
I had another visit (following on from the Friday before my holiday) to the osteopath this morning to try and sort out my "achilles" problem, which is actually a calf strain, so at least I am not hobbling about so much. The mad Canadian continues to pay dividends.
With the calf problem I have relinquished the idea of trying to get fit before the operation and prefer to just relax and stop pushing. When I get out of theatre I will be at "Ground Zero", so it will be good to get there from a lower level.
Things are moving quickly even if I am not.
In truth I am probably nore relaxed now than I have been at any part of the process. No-one in their right mind would look forward to a heavy duty operation on physical level but it means that we remove all the significant bits of the cancer and then let the chemotherapy do the rest.
The World Cup is a great distraction and Sunday will be busy as not only are England playing but Kitten, Boogle, Sushi, Saucy Sue and Banana are participating in the Cancer Research "Race for Life". I will be going to wait at the finish line to congratulate them when they complete the course but will obviously have one eye on the clock for the beginning of the match! They have collected a tidy sum in sponsorship.
This morning I had a call from the Marsden to ask me to attend the surgeon's clinic this afternoon at 4pm and also a letter regarding admission for surgery. It seems that the admission will be on Monday 12th rather than Tuesday 13th (as I was advised verbally).
I had another visit (following on from the Friday before my holiday) to the osteopath this morning to try and sort out my "achilles" problem, which is actually a calf strain, so at least I am not hobbling about so much. The mad Canadian continues to pay dividends.
With the calf problem I have relinquished the idea of trying to get fit before the operation and prefer to just relax and stop pushing. When I get out of theatre I will be at "Ground Zero", so it will be good to get there from a lower level.
Things are moving quickly even if I am not.
Wednesday 23 June 2010
Fear
Whilst I have considered the trauma that the operation brings it doesn't bring much fear.
The only fears (except one) that I have are fears that would be normal with any surgery and these are largely overridden by my desire to get on with things.
The issue of fear is a recurring theme for those close to me who want to scrape deeper, so I will try and be as open and honest as possible here.
The anaesthetic always gives me a little cause for concern because this is always a dangerous aspect of surgery, I have read that it is an issue with the type of surgery that I will undergo (The Ivor Lewis Oesophagectomy). I am always a little apprehensive about anaesthetic for the obvious reason that there is a possibility that I could be "lost", but any apprehension is diluted by the fact that I am in the very best hands. The fact that I have already undergone an anaesthetic at the same hospital in March gives me extra reassurance.
There is a little fear that the operation won't be successful; not in terms of removing the cancer but in terms of getting me back together. That is the most difficult part of the surgery and the one prone to the most likelihood of failure. Again, I am comforted by having the very best team of surgeons. My attitude is that if they can't manage it then I was f****** anyway. That may be blunt but it should be put into context that I have the mindset that I have been given another shot at life, as if my tumour had not been discovered when it was then I would probably have been a write off.
I don't fear any pain because I know that this will be transient and that I will be receiving good "pain management".
So what do I fear?
There is a weakness in my psyche and this was borne of my experience with the first endoscopy I had. I elected to have it without any anaesthetic. I did so whilst not knowing that I had a large tumour for the tube to navigate. It wasn't a pleasant experience and I had to fight feeling that had the potential to develop into a panic attack during the process. I took the same fear into the endoscopic ultrasound which was a similar but more intrusive process but with the glory of pethidine. So what is spooking me, not the large endoscopy tube but the a 5mm tube from my nose to my stomach for a few days after the operation.
I probably won't even feel it but I don't want to because I don't want to invoke my previous experiences.
The truth is that this is the least of my worries, but the mind can be a curious thing. Naturally, I am resigned to dealing with this head on and when I get there I probably won't even notice it. However, I may not have seen the end of the endoscopy tube, as I believe that it can be used a number of times to stretch the oesophagus months after the operation, if scar tissue restricts the passage.
Best get used to it.
The only fears (except one) that I have are fears that would be normal with any surgery and these are largely overridden by my desire to get on with things.
The issue of fear is a recurring theme for those close to me who want to scrape deeper, so I will try and be as open and honest as possible here.
The anaesthetic always gives me a little cause for concern because this is always a dangerous aspect of surgery, I have read that it is an issue with the type of surgery that I will undergo (The Ivor Lewis Oesophagectomy). I am always a little apprehensive about anaesthetic for the obvious reason that there is a possibility that I could be "lost", but any apprehension is diluted by the fact that I am in the very best hands. The fact that I have already undergone an anaesthetic at the same hospital in March gives me extra reassurance.
There is a little fear that the operation won't be successful; not in terms of removing the cancer but in terms of getting me back together. That is the most difficult part of the surgery and the one prone to the most likelihood of failure. Again, I am comforted by having the very best team of surgeons. My attitude is that if they can't manage it then I was f****** anyway. That may be blunt but it should be put into context that I have the mindset that I have been given another shot at life, as if my tumour had not been discovered when it was then I would probably have been a write off.
I don't fear any pain because I know that this will be transient and that I will be receiving good "pain management".
So what do I fear?
There is a weakness in my psyche and this was borne of my experience with the first endoscopy I had. I elected to have it without any anaesthetic. I did so whilst not knowing that I had a large tumour for the tube to navigate. It wasn't a pleasant experience and I had to fight feeling that had the potential to develop into a panic attack during the process. I took the same fear into the endoscopic ultrasound which was a similar but more intrusive process but with the glory of pethidine. So what is spooking me, not the large endoscopy tube but the a 5mm tube from my nose to my stomach for a few days after the operation.
I probably won't even feel it but I don't want to because I don't want to invoke my previous experiences.
The truth is that this is the least of my worries, but the mind can be a curious thing. Naturally, I am resigned to dealing with this head on and when I get there I probably won't even notice it. However, I may not have seen the end of the endoscopy tube, as I believe that it can be used a number of times to stretch the oesophagus months after the operation, if scar tissue restricts the passage.
Best get used to it.
Loose Ends and Planning
Three weeks is not a long time until "Bastille Day" and the fact that it falls in the middle of the week will make it appear to arrive much quicker, especially as I will be admitted on the day prior (Tuesday)
Whilst I continue to take a relaxed approach, I want to start shifting my focus to tying up loose ends before the operation and there also needs to be a degree of planning for the time I am in hospital and the subsequent recovery.
My approach continues to be "one step at a time" and it has served me well up until now.
All I will have to do after surgery is to lay in bed and whinge, so the focus is on how the family will function as normally as possible whilst constant hospital visits are not so easily served by the site being in central London.
I am, of course, very lucky to be treated at the aforementioned location but we will need help from my parents as well as my "outlaws". The mother-out-law is a nurse and I know that she will be "itching to go". The same can be said for the others and Kitten and I will be very grateful for the extra hands.
As both sets of parents live in Wales there will some organising to ensure that they can be here in London as and when they want be.
Whilst I continue to take a relaxed approach, I want to start shifting my focus to tying up loose ends before the operation and there also needs to be a degree of planning for the time I am in hospital and the subsequent recovery.
My approach continues to be "one step at a time" and it has served me well up until now.
All I will have to do after surgery is to lay in bed and whinge, so the focus is on how the family will function as normally as possible whilst constant hospital visits are not so easily served by the site being in central London.
I am, of course, very lucky to be treated at the aforementioned location but we will need help from my parents as well as my "outlaws". The mother-out-law is a nurse and I know that she will be "itching to go". The same can be said for the others and Kitten and I will be very grateful for the extra hands.
As both sets of parents live in Wales there will some organising to ensure that they can be here in London as and when they want be.
The "Ski Queen" and Her Entourage
Yesterday we had post work drinks with my ex-boss, who retired at a tender age to enjoy the wonders of nature skiing in the mountains.
It is a tough life for some and quite a few of the company's old hands joined with her to express our collective jealousy.
It was a jolly night with the some of the England boys in fine form. They seemed to have switched their allegiance from football to rugby off the back of Englands victory over Australia on the weekend, marvelling in the tales of the uber hero Martin Johnson and how he will win the World Cup next year. There didn't seem to be the same enthusiasm for today's football match but I wish them will and, personally, expect England to come good.
Apart from the main attraction "The Ski Queen", who was in fine form, there were lots of strong cameos. Sam the Eagle was in fine voice and Hoo Haa Johnny Boy was both passionate and vocal about expresssing how he believes that the English, Scots and Welsh should be living in peace love and harmony; a kind of giant Coca Cola advert. He gave us a heart-felt history lesson. Others sipped away whilst joining in the banter, including Jules, Big G, Super Frank and the Italian man (who was the only other sober member of the party).
Nights like these with so many characters that I have known for many years always have a humourous wind-up context but there is extra fun to be had when the main protagonists are slowly getting more and more lucid whilst I remain stone cold sober. My sobriety was ensured not least by the fact that I back on antibiotics to clear up a minor "cold" as quickly as possible.
So the Queen of Skiing will be walking in the summer firstly in France before moving on to South America.
Dr Schadenfreude put in a strong cameo performance (that reference is especially for him) and I ensured that Sam the Eagle found his way to the tube station before taking flight to Mrs Sam the Eagle in the deepest darkest England land of Essex.
It is a tough life for some and quite a few of the company's old hands joined with her to express our collective jealousy.
It was a jolly night with the some of the England boys in fine form. They seemed to have switched their allegiance from football to rugby off the back of Englands victory over Australia on the weekend, marvelling in the tales of the uber hero Martin Johnson and how he will win the World Cup next year. There didn't seem to be the same enthusiasm for today's football match but I wish them will and, personally, expect England to come good.
Apart from the main attraction "The Ski Queen", who was in fine form, there were lots of strong cameos. Sam the Eagle was in fine voice and Hoo Haa Johnny Boy was both passionate and vocal about expresssing how he believes that the English, Scots and Welsh should be living in peace love and harmony; a kind of giant Coca Cola advert. He gave us a heart-felt history lesson. Others sipped away whilst joining in the banter, including Jules, Big G, Super Frank and the Italian man (who was the only other sober member of the party).
Nights like these with so many characters that I have known for many years always have a humourous wind-up context but there is extra fun to be had when the main protagonists are slowly getting more and more lucid whilst I remain stone cold sober. My sobriety was ensured not least by the fact that I back on antibiotics to clear up a minor "cold" as quickly as possible.
So the Queen of Skiing will be walking in the summer firstly in France before moving on to South America.
Dr Schadenfreude put in a strong cameo performance (that reference is especially for him) and I ensured that Sam the Eagle found his way to the tube station before taking flight to Mrs Sam the Eagle in the deepest darkest England land of Essex.
Monday 21 June 2010
How's the Smell of Dog Food?
Nevermind the topic of surgery dates being finalised (see previous post and scheduled appointments page), there are serious issues to discuss
In yesterday's comments Notoplip poses the questions "How's the smell of dog food?" under his better half's alias "Sushi".
Anybody who has smelled pouches of dog food will know that they are pungent. To anybody who has just finished chemotherapy they might be described as super-pungent. So this is exactly when you need your mate to stroll past you (when your mind is elsewhere) and say "sniff this".
Rule number 1 - never trust your mates.
A casual sniff of an empty dog food pouch that has been strategically placed under your nose without you noticing is not a good thing.
Rule number 2 - don't get suckered with exactly the same trick the next day.
Rule number 3 - don't rely on the mercy of your mates to avoid being suckered on the 3rd day. I think he felt for me by then so I had a narrow escape.
Well done Notoplip you gave me a good dog food "caning".
I'd be grateful if you didn't do it whilst I am in critical care in three weeks time and I would also be grateful if you didn't carry out your threat to add an extra tube to my post surgery collection!
In yesterday's comments Notoplip poses the questions "How's the smell of dog food?" under his better half's alias "Sushi".
Anybody who has smelled pouches of dog food will know that they are pungent. To anybody who has just finished chemotherapy they might be described as super-pungent. So this is exactly when you need your mate to stroll past you (when your mind is elsewhere) and say "sniff this".
Rule number 1 - never trust your mates.
A casual sniff of an empty dog food pouch that has been strategically placed under your nose without you noticing is not a good thing.
Rule number 2 - don't get suckered with exactly the same trick the next day.
Rule number 3 - don't rely on the mercy of your mates to avoid being suckered on the 3rd day. I think he felt for me by then so I had a narrow escape.
Well done Notoplip you gave me a good dog food "caning".
I'd be grateful if you didn't do it whilst I am in critical care in three weeks time and I would also be grateful if you didn't carry out your threat to add an extra tube to my post surgery collection!
"Let's get it on"
I finished my last with the headline quote from the now retired boxing referee Mills Lane and that is exactly what is happening. The phoney war can be declared as being over.
Pre-operation assessmement Tue 6th July
Admission Tue 13th July
Operation Wed 14th July
At my meeting today it was confirmed that the chemotherapy had gone well and although the tumour is classified the same there has been significant shrinkage.
Just enough time to fit in the World Cup final on the Sunday 11th July.
Pre-operation assessmement Tue 6th July
Admission Tue 13th July
Operation Wed 14th July
At my meeting today it was confirmed that the chemotherapy had gone well and although the tumour is classified the same there has been significant shrinkage.
Just enough time to fit in the World Cup final on the Sunday 11th July.
Sunday 20 June 2010
Back from Holiday
After my last post on Wednesday, I promptly came down with a mild cold, probably just as a reaction to relaxing after what has been an interesting ta few months time.
I was left to my own devices on Thursday to give me some chill time and so my thanks to the rest of the group for giving me the space and for contributing much more than I did over the week
To be honest I didn't do much on holiday, but my energy levels weren't the best. We certainly all ate a lot, but that is what holidays are partly for. I drank a few beers with my meals and that felt good too. Everyone had a good time and the kids all got along too (as they always do).
What was less helpful and a bit more damaging from a psychological perspective was an increased difficultly in eating. I am looking forward to tomorrow's meeting to discuss my overall progress and get things in perspective.
The Isle of Wight was a delight and the visit was helped by the good weather.
Spiritually, the holiday served as a clear break from chemotherapy as the approach to surgery gains momentum and, whilst I am yet to be notified of a date for surgery, I have a pre-operation assessment scheduled for 6th July.
As the boxing referee Mills Lane used to say - "Let's get it on"
I was left to my own devices on Thursday to give me some chill time and so my thanks to the rest of the group for giving me the space and for contributing much more than I did over the week
To be honest I didn't do much on holiday, but my energy levels weren't the best. We certainly all ate a lot, but that is what holidays are partly for. I drank a few beers with my meals and that felt good too. Everyone had a good time and the kids all got along too (as they always do).
What was less helpful and a bit more damaging from a psychological perspective was an increased difficultly in eating. I am looking forward to tomorrow's meeting to discuss my overall progress and get things in perspective.
The Isle of Wight was a delight and the visit was helped by the good weather.
Spiritually, the holiday served as a clear break from chemotherapy as the approach to surgery gains momentum and, whilst I am yet to be notified of a date for surgery, I have a pre-operation assessment scheduled for 6th July.
As the boxing referee Mills Lane used to say - "Let's get it on"
Wednesday 16 June 2010
Where The Elements Meet
Today, I felt as though we found the spirit of our holiday.
We went off the commercial track and went to Compton beach.
I have a feeling that we might be visiting again.
We went off the commercial track and went to Compton beach.
An ice cream van and some "amenities" in a car park and a steep walk down to a quiet beach. No shops, no distractions and no hotels either (so my assumption is no pollution). Just great weather, good sand, some wetsuits for the kids, body boards and a couple of footballs.
Not sure what is with the wibbly wobbly camera work (I'll say it was windy).
Down on the beach it was warm and calm, any wind there was (which wasn't much) we were protected from by the cliff walls.
The kids had a whale of a time and everyone was relaxed.
Down on the beach it was warm and calm, any wind there was (which wasn't much) we were protected from by the cliff walls.
The kids had a whale of a time and everyone was relaxed.
A simple time, but a fun time.
Monday 14 June 2010
Is this what it's like?
I have been showing Notoplip the ways of the Dell webcam and he has been trying to train me up to be English.
Is this what it's like???
I've tried to capture that bulldog spirit and the merest hint of xenaphobia.
A Bit of Earthiness (Gruesome)
This is not for the squeamish. So, don't read if you are!
Because my tumour is long and thin rather than short and stubby I have avoided the more day to day gruesome aspects of this cancer. Those with short and stubby tumours often find it difficult to consume even liquids before operation and sometimes need a "stent" inserted into the oesophagus in order to keep the passage open.
Before I started chemotherapy I was having to take mouthfuls of liquid with most mouthfuls of food but, crucially, I was still able to eat anything, more or less.
After the start of chemo I was able to eat, pretty much unaided. It is obviously frightening to think that rather than your food getting stuck and swilled down with a few glugs of water that it might just get stuck.
Since chemotherapy has finished, I have noticed that eating is getting more difficult again and, on Saturday, I made the mistake of wolfing down a couple of sausages without concentrating on what I was doing. The result as that some sausage got stuck in my throat.
I got a glass of water to swill it down, but nothing shifted. I thought that water had come back out of my mouth but dismissed it and took another big glug of water and it came flying out of my nose.
I'm not one to panic and I thought it quite funny, but started to think that I might not be able to clear my pipe. The passage was blocked and had simply filled up like a glass when I had taken a drink.
I managed to clear it after a while but it is moments like this that make you realise that you are, at some level, "alone" in this journey. No matter how much support you receive this journey is ultimately a physical one of your own and it is clear that surgery and successful oncology is the only road to rehabilitation.
Hopefully, I will get to surgery without any major problems but I have been lucky in this respect. In some ways it is frightening to think that your body has failed to the point that it is unable to do the very basic thing of consuming food but at least I have not been hit harder (touch wood) in this respect.
Clearly I had a moment between me, the sausage, a glass of water and the kitchen sink but I took the lesson and stuck it in my back pocket. It was a timely reminder that after surgery I will have to sit down when I eat, chew thoroughly and adopt good posture.
F*** I am becoming a right boring old fart :-)
Because my tumour is long and thin rather than short and stubby I have avoided the more day to day gruesome aspects of this cancer. Those with short and stubby tumours often find it difficult to consume even liquids before operation and sometimes need a "stent" inserted into the oesophagus in order to keep the passage open.
Before I started chemotherapy I was having to take mouthfuls of liquid with most mouthfuls of food but, crucially, I was still able to eat anything, more or less.
After the start of chemo I was able to eat, pretty much unaided. It is obviously frightening to think that rather than your food getting stuck and swilled down with a few glugs of water that it might just get stuck.
Since chemotherapy has finished, I have noticed that eating is getting more difficult again and, on Saturday, I made the mistake of wolfing down a couple of sausages without concentrating on what I was doing. The result as that some sausage got stuck in my throat.
I got a glass of water to swill it down, but nothing shifted. I thought that water had come back out of my mouth but dismissed it and took another big glug of water and it came flying out of my nose.
I'm not one to panic and I thought it quite funny, but started to think that I might not be able to clear my pipe. The passage was blocked and had simply filled up like a glass when I had taken a drink.
I managed to clear it after a while but it is moments like this that make you realise that you are, at some level, "alone" in this journey. No matter how much support you receive this journey is ultimately a physical one of your own and it is clear that surgery and successful oncology is the only road to rehabilitation.
Hopefully, I will get to surgery without any major problems but I have been lucky in this respect. In some ways it is frightening to think that your body has failed to the point that it is unable to do the very basic thing of consuming food but at least I have not been hit harder (touch wood) in this respect.
Clearly I had a moment between me, the sausage, a glass of water and the kitchen sink but I took the lesson and stuck it in my back pocket. It was a timely reminder that after surgery I will have to sit down when I eat, chew thoroughly and adopt good posture.
F*** I am becoming a right boring old fart :-)
Sunday 13 June 2010
The Blue house
So here we are in the Blue House in the Isle of Wight. And what a place it is.
Chilled out and funky. The literature undersells it.
Ipod plugged into the sound system (which comes with Ibiza chill out CD). Kids in the garden playing cricket with Notoplip and Chelsea the dog. I'm off to join them.
Festival passes at the ready. Big G is already there with his Mrs S.
Our holidays have gone from the "White Isle" (Ibiza) to the Isle of White.
Chilled out and funky. The literature undersells it.
Ipod plugged into the sound system (which comes with Ibiza chill out CD). Kids in the garden playing cricket with Notoplip and Chelsea the dog. I'm off to join them.
Festival passes at the ready. Big G is already there with his Mrs S.
Our holidays have gone from the "White Isle" (Ibiza) to the Isle of White.
Surprise, Surprise
We are off on holiday today and the kids haven't "sussed it" yet. I have told them that we are going out for the day and Huffty is complaining that he won't be able to watch the football.
We had a good time at SandD's yesterday evening with the kids having been there in the afternoon for their daughter's birthday party.
It has been a disgrace that Huffty has recently been bought two England football shirts and was wearing one to the party yesterday. Not only that but when we sat down for the football he was proudly sporting an England hat and bazooka.
There are claims from my friends that he and my daughter are English, so I though that I would clear this one up for once and for all.
Where they have been born is a geographical accident but they came out of a Welsh woman's body and they got in there courtesy of a Welsh man. Their spirit is Welsh rather like a Bonsai tree that has been grown in England it still isn't an English tree.
I can see this debate raging for a while and it's quite funny. Just so long as Huffty doesn't come home one day, sit me down and say those feared words "Dad I want to support England at Rugby" then everything will be OK.
I am always a tacit "follower" of the English football team until they get to the quarter finals and then I get nervous! That's rather different from rugby where I support two teams 1) Wales and 2) Whoever is playing England.
For those who don't know me so well there is, of course, banter here. I have lived in London since I was six and but despite losing my Welsh accent (which I can still slip into) have never lost my roots. This being largely due to both of my parents being Welsh and there never having been any let up in a constant cycle of visits to Wales over the years to visit my family which has always been rooted within a small radius between Cardiff and Bridgend. Only my sister and I live in London. My parents have long since moved back.
It won't do Huffty any harm to support England because he has to learn how to lose at some point. Obviously if he supported Welsh football then he would have to learn to lose before the tournament starts!
I digress, as we are off on holiday and thoroughly looking forward to it. Yes I have English friends and we will be spending the whole week with them. I assume that at some point, Notoplip will be wearing the English away jersey that I bought for his birthday.
Our French "The Kubees"friends have turned up trumps as they have furnished us with passes for the last day of the Isle of Wight festival. Many thanks to them!
So all in all, I shall enjoy exploring a part of England with which I am not familiar. Regular visits to Wales have always meant that I am more familiar with the Welsh coastline (I come from ten miles from the coast and Kitten from a coastal town), so this will be a pleasant change.
I will be able to relax even more than I usually do giving up the hurly burly of London for a week, a "Soul Lent", if you like. That's an extraordinarily bad pun to finish on.
We had a good time at SandD's yesterday evening with the kids having been there in the afternoon for their daughter's birthday party.
It has been a disgrace that Huffty has recently been bought two England football shirts and was wearing one to the party yesterday. Not only that but when we sat down for the football he was proudly sporting an England hat and bazooka.
There are claims from my friends that he and my daughter are English, so I though that I would clear this one up for once and for all.
Where they have been born is a geographical accident but they came out of a Welsh woman's body and they got in there courtesy of a Welsh man. Their spirit is Welsh rather like a Bonsai tree that has been grown in England it still isn't an English tree.
I can see this debate raging for a while and it's quite funny. Just so long as Huffty doesn't come home one day, sit me down and say those feared words "Dad I want to support England at Rugby" then everything will be OK.
I am always a tacit "follower" of the English football team until they get to the quarter finals and then I get nervous! That's rather different from rugby where I support two teams 1) Wales and 2) Whoever is playing England.
For those who don't know me so well there is, of course, banter here. I have lived in London since I was six and but despite losing my Welsh accent (which I can still slip into) have never lost my roots. This being largely due to both of my parents being Welsh and there never having been any let up in a constant cycle of visits to Wales over the years to visit my family which has always been rooted within a small radius between Cardiff and Bridgend. Only my sister and I live in London. My parents have long since moved back.
It won't do Huffty any harm to support England because he has to learn how to lose at some point. Obviously if he supported Welsh football then he would have to learn to lose before the tournament starts!
I digress, as we are off on holiday and thoroughly looking forward to it. Yes I have English friends and we will be spending the whole week with them. I assume that at some point, Notoplip will be wearing the English away jersey that I bought for his birthday.
Our French "The Kubees"friends have turned up trumps as they have furnished us with passes for the last day of the Isle of Wight festival. Many thanks to them!
So all in all, I shall enjoy exploring a part of England with which I am not familiar. Regular visits to Wales have always meant that I am more familiar with the Welsh coastline (I come from ten miles from the coast and Kitten from a coastal town), so this will be a pleasant change.
I will be able to relax even more than I usually do giving up the hurly burly of London for a week, a "Soul Lent", if you like. That's an extraordinarily bad pun to finish on.
Thursday 10 June 2010
Reflection
I feel relaxed after the good news last Friday. It was probably the most uplifting thing for me since dismissing the existence of secondary cancer back in March.
I've been working all week and have been in the office everyday except Monday. As we are off on holiday next week there are deadlines to hit and I have been putting a bit of graft in.
Kitten and I are off to the Isle of Wight for a week with Notoplip, Sushi and all of our children. We've got ourselves a really good place to relax in, so all we need is some half decent weather. Right now I can think of nothing better to do than relax with the family and the place we have is set in a couple of acres with private access to part of a beach. So, walks and sea and Chi Kung in the back garden with even more wildlife than ours.
The Chi Kung has been very useful to me over the last couple of months. It is something which is very simple to do and requires a quietening of the mind and body. Apart from helping me to keep physically strong through chemotherapy it helps me to keep focused in the moment. I supplement the Chi Kung with meditations and the constant repetition of the same themes provides a natural development and pathway of its own, a quiet road for the soul through the turmoil.
I intend to enjoy fully the time between now and the operation as there are no obvious obstacles only good things. Time to enjoy with the family on holiday and a football World Cup too.
The World Cup festivities start in earnest on Saturday as SandD are holding a birthday party for their daughter in the day followed by a viewing of the first England match in the evening. It's the end of April since we have all get together and there will be a big group, so an enjoyable time before kicking off to the IoW the next morning.
Meanwhile my efforts to get fit have taken a little knock as failure to warm up properly in the gym has resulted in a problem with my achilles, so it is back to the mad Canadian osteopath with a different ailment. First the back then the tinnitus, now the leg!
There's not too much to say because I am busy and I am happy. That feels like a good place to be.
I've been working all week and have been in the office everyday except Monday. As we are off on holiday next week there are deadlines to hit and I have been putting a bit of graft in.
Kitten and I are off to the Isle of Wight for a week with Notoplip, Sushi and all of our children. We've got ourselves a really good place to relax in, so all we need is some half decent weather. Right now I can think of nothing better to do than relax with the family and the place we have is set in a couple of acres with private access to part of a beach. So, walks and sea and Chi Kung in the back garden with even more wildlife than ours.
The Chi Kung has been very useful to me over the last couple of months. It is something which is very simple to do and requires a quietening of the mind and body. Apart from helping me to keep physically strong through chemotherapy it helps me to keep focused in the moment. I supplement the Chi Kung with meditations and the constant repetition of the same themes provides a natural development and pathway of its own, a quiet road for the soul through the turmoil.
I intend to enjoy fully the time between now and the operation as there are no obvious obstacles only good things. Time to enjoy with the family on holiday and a football World Cup too.
The World Cup festivities start in earnest on Saturday as SandD are holding a birthday party for their daughter in the day followed by a viewing of the first England match in the evening. It's the end of April since we have all get together and there will be a big group, so an enjoyable time before kicking off to the IoW the next morning.
Meanwhile my efforts to get fit have taken a little knock as failure to warm up properly in the gym has resulted in a problem with my achilles, so it is back to the mad Canadian osteopath with a different ailment. First the back then the tinnitus, now the leg!
There's not too much to say because I am busy and I am happy. That feels like a good place to be.
Monday 7 June 2010
Blood Test Results and A Visit to the GP
I asked for unscheduled blood tests on Friday so that I could gauge where I am in relation to be immune system capability and haemoglobin levels.
The haemoglobin levels are still pretty good. At 13 they are just below normal, which is 14-16 for men. I am still taking iron tablets to aid this as a counterweight to the effect of the tumour.
The neutrophils, which are key to fighting infection, are still low (at 2.6) but on their way up and reasonable considering I have just finished chemotherapy. So, it's not yet time to start jumping into swimming pools or catching the rush hour train, but I am heading in the right direction.
I managed to squeeze in a visit to the GP today. As I have mentioned before, she is probably the best GP I have come across and is blessed with the listening skills that were not bequeathed to me. The point of the visit was just to bring her up to speed, but I had not intended on going today. Her popularity means that there is a Monday morning "scrum down" for appointments with her and I keep on forgetting or being otherwise indisposed. So, I made the effort this morning to go to the doctor's first thing to make an appointment and was surprised when one landed at my feet for the day.
That's enough appointments for them moment, I have collected them like TVs recently, so I will concentrate on other issues.
The next few days before I go on holiday will be exceptionally busy, but I hope to find time to have a thrash around in the gym too.
The haemoglobin levels are still pretty good. At 13 they are just below normal, which is 14-16 for men. I am still taking iron tablets to aid this as a counterweight to the effect of the tumour.
The neutrophils, which are key to fighting infection, are still low (at 2.6) but on their way up and reasonable considering I have just finished chemotherapy. So, it's not yet time to start jumping into swimming pools or catching the rush hour train, but I am heading in the right direction.
I managed to squeeze in a visit to the GP today. As I have mentioned before, she is probably the best GP I have come across and is blessed with the listening skills that were not bequeathed to me. The point of the visit was just to bring her up to speed, but I had not intended on going today. Her popularity means that there is a Monday morning "scrum down" for appointments with her and I keep on forgetting or being otherwise indisposed. So, I made the effort this morning to go to the doctor's first thing to make an appointment and was surprised when one landed at my feet for the day.
That's enough appointments for them moment, I have collected them like TVs recently, so I will concentrate on other issues.
The next few days before I go on holiday will be exceptionally busy, but I hope to find time to have a thrash around in the gym too.
Thanks
Thanks to everyone for the calls, texts and emails over the last few days.
There were even a couple of comments on the blog!!!!!
There were even a couple of comments on the blog!!!!!
Sunday 6 June 2010
A Lighter Note
Whilst my focus has been on the CT Scan and the meeting with the surgeon in the last week, it is worth saying that there has plenty of other stuff going on.
Because the blog is about my health it is easy to assume that occupies most of what goes on, but the last week is a perfect illustration that life goes on.
On Monday we had another day out at the local theme park with Notoplip and Sushi but on this occasion there was a twist as "Acwaman" (so called because he sells scuba diving equipment) was over from the US of A with his wife and children.
We had a great weekend over there though it was all a bit topsy turvy as our short stay was fragmented by the time differential and our choice of staying out all night on the first night (US time) having travelled all day UK time.
The last video is topical because at the end of the day at the local theme park last Monday, I persuaded Notoplip, Acwaman and his son to go on a spinning cradle ride where it stops mid-air and you get soaked with water.
We sat centre ride where you get the biggest soaking and Notoplip was relieved that he was removed because the safety mechanism would not close over his Desperate Dan style shoulders. He was offered another berth towards the side, but politely declined whilst laughing his way back up at us to the safety of his family. The last time we went on this ride he had glanced sideways at me half way through (looking decidedly green) and declared that he was unlikely to make it the whole way through without dispensing with his Kentucky style chicken.
Anyway, a good day was had by all and, despite the fact that I have know Acwaman since the mid 90's I had not yet met his family. So that was a pleasure.
The rest of the week was mundane but normal. I worked in the office Tuesday and Thursday and worked from home Wednesday afternoon and Friday morning to allow for the hospital appointments.
After the trials of Friday we had a jolly BBQ with the missing top lips and also spent Saturday around the pool with them at their local health club. Saturday's also involve me taking the Huffty to football in the morning and today he has been for a trial for an under sevens' side (no prizes for guessing who is running it). We are loafing around this afternoon and I have been playing darts with him as Kitten has taken Boogle to a cheer leading competition in Bournemouth where she is taking part.
As an update, it is the first time that her team competed and they came second. Boogle has just come home with the team's trophy, so she is very pleased.
All this and gym visits show that life is as normal as it can be at the moment and is a welcome "Night Porter Scene" (a reference to Macbeth for the Shakespeare buffs).
Because the blog is about my health it is easy to assume that occupies most of what goes on, but the last week is a perfect illustration that life goes on.
Acwaman went to school with Notoplip, Billy the Fish and D.A. Decorator and moved to the US in his teens. He is usually over here every year, but the last time we saw him was when Notoplip, Billy the Fish and I joined him in the States for the Ricky Hatton vs Floyd Mayweather fight in Las Vegas two and a half years ago.
We had a great weekend over there though it was all a bit topsy turvy as our short stay was fragmented by the time differential and our choice of staying out all night on the first night (US time) having travelled all day UK time.
There were some good moments on the trip and I have a couple of videos from mobile phones, which I thought I would share.
We stayed in the MGM hotel where the fight was based. If you haven't been to Las Vegas, like Kitten :-), it is difficult to comprehend the scale of these hotels. To put things into perspective, whilst we stayed at the MGM they had Tom Jones performing in one auditorium within the hotel, the Circque du Soleil in another and the boxing in yet another arena that held 16,000 people.
The video below is only remarkable for the fact that, whilst filming, Notoplip gets the words wrong to the simplest chant in the world (listen closely).
You can get a taste of what the atmosphere was like over there in what was the biggest influx of Brits since the days of the Beatles.
The Americans are always good hosts but don't take too kindly to having their national anthem roundly booed, especially on their own soil by people who they consider to be their friends. To be honest that element was embarrassing and it wasn't a minority either. You have to realise that about three quarters of the 16,000 capacity were from our shores. The incident was front page both here and there but it was more in keeping with the cartoon style wrestling atmosphere that came with the hype of the fight rather than being malicious. Some might say that it is about time they yanks had their bubble burst a little, naturally I wouldn't subscribe to that theory :-).
Anyway, I digress but before moving back to my week it is worth mentioning that there was another funny video moment.
I was sharing a room with Billy the Fish whilst Acwaman shared with Notoplip. On one morning Acwaman decided that it would be funny to through a cup of water of the sleeping Notoplip. Now there is a saying that "revenge is a dish best served cold", so Notoplip took it on himself to up the karma stakes.
After Acwaman had retired from a lengthy drinking session Notoplip filled up a bath full of freezing cold water, carefully removed Acwaman's laptop, mobile phone and any other materials that might not recover from a damned good soaking and got hold of a nice big bucket. The results are only astonishing for the depth of sleep that Acwaman must have been in. Either that or Acwaman's business means that he has built up a natural resistance. Not the greatest quality video, but you get the picture (even if you do have to look at it sideways).
The last video is topical because at the end of the day at the local theme park last Monday, I persuaded Notoplip, Acwaman and his son to go on a spinning cradle ride where it stops mid-air and you get soaked with water.
We sat centre ride where you get the biggest soaking and Notoplip was relieved that he was removed because the safety mechanism would not close over his Desperate Dan style shoulders. He was offered another berth towards the side, but politely declined whilst laughing his way back up at us to the safety of his family. The last time we went on this ride he had glanced sideways at me half way through (looking decidedly green) and declared that he was unlikely to make it the whole way through without dispensing with his Kentucky style chicken.
Anyway, a good day was had by all and, despite the fact that I have know Acwaman since the mid 90's I had not yet met his family. So that was a pleasure.
The rest of the week was mundane but normal. I worked in the office Tuesday and Thursday and worked from home Wednesday afternoon and Friday morning to allow for the hospital appointments.
After the trials of Friday we had a jolly BBQ with the missing top lips and also spent Saturday around the pool with them at their local health club. Saturday's also involve me taking the Huffty to football in the morning and today he has been for a trial for an under sevens' side (no prizes for guessing who is running it). We are loafing around this afternoon and I have been playing darts with him as Kitten has taken Boogle to a cheer leading competition in Bournemouth where she is taking part.
As an update, it is the first time that her team competed and they came second. Boogle has just come home with the team's trophy, so she is very pleased.
All this and gym visits show that life is as normal as it can be at the moment and is a welcome "Night Porter Scene" (a reference to Macbeth for the Shakespeare buffs).
Saturday 5 June 2010
After the News
The news yesterday really was that there wasn't any news. Everything is still on course.
There was, however, a sea change.
The effect on both Kitten and me is that we can see a clear path through. Naturally, there will be twists and turns, but we can see daylight.
What was pivotal for me was the frank and positive attitude of the surgeon. He seemed very confident of achieving the best possible results. There was also further praise for me from the way that I was approaching things, my general levels of health and how well I had come through chemotherapy. There was surprise that I was back in the gym, but it was encouraged. I was also given a physiotherapy test of pacing between cones placed 10m apart where I did 4 times better than anyone else who had taken the test that day. I have to smile though, because I don't think that the competition will have been too hot.
The salient points from this are that I am well positioned to get myself in a good frame to approach the operatoin and, whilst I am not dependant on praise, these are unchartered waters so praise has a supporting and uplifting effect.
We talked with the surgeon about the operation yesterday and I was given fact sheets about both the procedure and the recovery. It doesn't make for pleasant reading, but it is a means to an end.
I will post information about the operation process at a later date but wil shelve thoughts about it for a while and concentrate on enjoying the gap in treatment and looking forward to our week's holiday (starting Sunday 13th). There is also the World Cup to enjoy and plenty of work to catch up on.
All in all, the next six to eight weeks should fly by, before we get down to the real business.
The Path of Self-Healing
Woods that part to beckon us in
Trees that bark the wolves howling winds
Banshees who cry in a cacophonous din
Rains that lash through the thickest of skins
A sword of steel can temper your fears
A majestic stallion can bring your home near
A rising sun brings the path into view
But confronting your pain is the quickest way through
There was, however, a sea change.
The effect on both Kitten and me is that we can see a clear path through. Naturally, there will be twists and turns, but we can see daylight.
What was pivotal for me was the frank and positive attitude of the surgeon. He seemed very confident of achieving the best possible results. There was also further praise for me from the way that I was approaching things, my general levels of health and how well I had come through chemotherapy. There was surprise that I was back in the gym, but it was encouraged. I was also given a physiotherapy test of pacing between cones placed 10m apart where I did 4 times better than anyone else who had taken the test that day. I have to smile though, because I don't think that the competition will have been too hot.
The salient points from this are that I am well positioned to get myself in a good frame to approach the operatoin and, whilst I am not dependant on praise, these are unchartered waters so praise has a supporting and uplifting effect.
We talked with the surgeon about the operation yesterday and I was given fact sheets about both the procedure and the recovery. It doesn't make for pleasant reading, but it is a means to an end.
I will post information about the operation process at a later date but wil shelve thoughts about it for a while and concentrate on enjoying the gap in treatment and looking forward to our week's holiday (starting Sunday 13th). There is also the World Cup to enjoy and plenty of work to catch up on.
All in all, the next six to eight weeks should fly by, before we get down to the real business.
The Path of Self-Healing
Woods that part to beckon us in
Trees that bark the wolves howling winds
Banshees who cry in a cacophonous din
Rains that lash through the thickest of skins
A sword of steel can temper your fears
A majestic stallion can bring your home near
A rising sun brings the path into view
But confronting your pain is the quickest way through
Friday 4 June 2010
Happy Dayz
I had my appointment at the Marsden today and the news is good news.
They are confident that all of the tumour can be removed and that I am in a good position to make a solid recovery.
There was no re-staging of the tumour as such, I was told that they would only do that on biopsis, which is different to the experience of "annestonefamily". However, the main issue is that they believe that the cancer can be completely removed.
I will soon receive a date for the operation, which will be in the middle to the end of July.
The operation is a little more severe than I though in terms of how much will be removed, he indicated about 7-8 inches with the stomach hoisted up to the chest. To be honest, that is the least of my worries the main thing is that I can see daylight through the forest.
Time for a BBQ.
They are confident that all of the tumour can be removed and that I am in a good position to make a solid recovery.
There was no re-staging of the tumour as such, I was told that they would only do that on biopsis, which is different to the experience of "annestonefamily". However, the main issue is that they believe that the cancer can be completely removed.
I will soon receive a date for the operation, which will be in the middle to the end of July.
The operation is a little more severe than I though in terms of how much will be removed, he indicated about 7-8 inches with the stomach hoisted up to the chest. To be honest, that is the least of my worries the main thing is that I can see daylight through the forest.
Time for a BBQ.
Thursday 3 June 2010
Emotional Impact - Take II
After yesterday's attempt to explain my emotional state I thought that I would have another stab at it.
I remembered what I said in my first post of this blog
" Just as this condition developed by stealth I expect to have to find a strong centre of inner peace - "emotional silence"
In my mind we learn from everything that we do in this life and my physical journey is also a mental, emotional and spiritual journey.
The way that I think of it is that I am up to my neck in it. Imagine standing up to your chin in water, what would you prefer? Would it be
I remembered what I said in my first post of this blog
" Just as this condition developed by stealth I expect to have to find a strong centre of inner peace - "emotional silence"
In my mind we learn from everything that we do in this life and my physical journey is also a mental, emotional and spiritual journey.
The way that I think of it is that I am up to my neck in it. Imagine standing up to your chin in water, what would you prefer? Would it be
- For the water to be choppy and for you to be constantly taking it on board, not knowing where the next wave is coming from?
- To create a calmness that allows you to hold things still until the sun comes out or you get swept away.
Wednesday 2 June 2010
Emotional Impact
A few people have suggested, or said directly, that they think "I am putting on a front" or not being entirely open with my emotions. The latter comment comes from Kitten, so it is worthy of consideration and discussion. We had a chat about this last night.
The fact is that whilst I am by nature somewhat volatile, I have worked hard in the last 15 years or so to control and understand my temperament (with a degree but by no means complete success!). When you are "in moment" your nature takes the ascendency, which explains why so many people behave like animals behind a steering wheel.
Where I believe that my temperament has always been sound, and where it continues to improve, is how I control my behaviour when the stakes are high. In these situations I feel that my understanding of my own behaviour helps me to keep calm.
The situation I find myself in is beyond my control, so there are a number of things that I can do to keep focused and calm.
Friday, is a big day for me. Whilst I expect to gain a clearer picture of where I am, I do not have an expection of guaranteed answers. It may be that I have to wait until surgery. The way I approach this is simply to manage my expectations.
I have an underlying belief that I will come through the illness and that is a good starting point. I also accept that the road to recovery is unlikely to present itself in a straight line, so I can ride the knocks as they come.
Until there is any significant news to the contrary I will continue to keep that mindset.
I do have moments when I feel the full brunt of what's happening and that is usually when I am with my children, but rather than dwell on the obvious I draw motivational strength from those moments.
It is inevitable that there is an underlying current of worry and anger. I have always found anger to be my main motivational force. Without it I would be completely lazy and the trick is to channel it constructively. Where my emotions have been least controlled have been in the first few days of each cycle of chemotherapy where the cocktail of drugs (including steriods) creates an emotional maelstrom. Even so, apart from one or two angry verbal outbursts, these periods have seen nothing worse than snappiness or grumpiness and an element of withdrawal.
The absence of pain also helps but that may not continue as I move away from the chemotherapy towards surgery. Plenty of rest is probably the best way to avoid the return of pain as it appears when tired.
As I have mentioned before, a lot of weight has been taken off me by the support around me and the fact is that my general feeling of health is much better than what must have been a steady but harsh decline into anaemia and cancer last year and the beginning of this.
There's plenty more of the journey to go but I will continue to practice what works for me and keeps me happy, whether that is doing Chi Kung in the garden whilst running the gauntlet of the squirrels, working, meditating or socialising.
The other weapon is distraction and I have probably accumulated more electrical equipment than I originally set out to :-)
The fact is that whilst I am by nature somewhat volatile, I have worked hard in the last 15 years or so to control and understand my temperament (with a degree but by no means complete success!). When you are "in moment" your nature takes the ascendency, which explains why so many people behave like animals behind a steering wheel.
Where I believe that my temperament has always been sound, and where it continues to improve, is how I control my behaviour when the stakes are high. In these situations I feel that my understanding of my own behaviour helps me to keep calm.
The situation I find myself in is beyond my control, so there are a number of things that I can do to keep focused and calm.
Friday, is a big day for me. Whilst I expect to gain a clearer picture of where I am, I do not have an expection of guaranteed answers. It may be that I have to wait until surgery. The way I approach this is simply to manage my expectations.
I have an underlying belief that I will come through the illness and that is a good starting point. I also accept that the road to recovery is unlikely to present itself in a straight line, so I can ride the knocks as they come.
Until there is any significant news to the contrary I will continue to keep that mindset.
I do have moments when I feel the full brunt of what's happening and that is usually when I am with my children, but rather than dwell on the obvious I draw motivational strength from those moments.
It is inevitable that there is an underlying current of worry and anger. I have always found anger to be my main motivational force. Without it I would be completely lazy and the trick is to channel it constructively. Where my emotions have been least controlled have been in the first few days of each cycle of chemotherapy where the cocktail of drugs (including steriods) creates an emotional maelstrom. Even so, apart from one or two angry verbal outbursts, these periods have seen nothing worse than snappiness or grumpiness and an element of withdrawal.
The absence of pain also helps but that may not continue as I move away from the chemotherapy towards surgery. Plenty of rest is probably the best way to avoid the return of pain as it appears when tired.
As I have mentioned before, a lot of weight has been taken off me by the support around me and the fact is that my general feeling of health is much better than what must have been a steady but harsh decline into anaemia and cancer last year and the beginning of this.
There's plenty more of the journey to go but I will continue to practice what works for me and keeps me happy, whether that is doing Chi Kung in the garden whilst running the gauntlet of the squirrels, working, meditating or socialising.
The other weapon is distraction and I have probably accumulated more electrical equipment than I originally set out to :-)
Chemo Finished and Scans Done
Today is not an eventful but insignificant day.
I took my last chemotherapy tablets prior to surgery this morning and I also had a CT scan and MUGA (nuclear heart) scan.
So plenty of laying in machines. The heart scan is a precautionary measure in relation to the bevacizumab (Avastin) trial drug that is part of the chemotherapy treatment.
Although I was being scanned today the real event takes place on Friday when I will meet the surgeon again. Between now and then my scans will be assessed and it is the CT scan that will show how well the chemotherapy has worked. I have set my expectations at "no change", but obviously I hope for some improvment as per my post At the Junction - back to the analysis the key to the process is whether the surgeon can get a clean shot at the tumour and get the whole thing out. Any less and the future will not look so rosy.
In these situations my approach is to set my expectations low because the fallout from disappointment is not desirable. Upside will be greeting with cheer but feet still firmly on the ground. In other words I will continue to maintain the status quo and be boring
As this is a blog about my journey through cancer my next article will be on the emotional journey because it is a subject worthy of discussion and has been raised by a few people.
Thanks to everyone for the calls and texts of support it is good to know that you are thinking about me.
I took my last chemotherapy tablets prior to surgery this morning and I also had a CT scan and MUGA (nuclear heart) scan.
So plenty of laying in machines. The heart scan is a precautionary measure in relation to the bevacizumab (Avastin) trial drug that is part of the chemotherapy treatment.
Although I was being scanned today the real event takes place on Friday when I will meet the surgeon again. Between now and then my scans will be assessed and it is the CT scan that will show how well the chemotherapy has worked. I have set my expectations at "no change", but obviously I hope for some improvment as per my post At the Junction - back to the analysis the key to the process is whether the surgeon can get a clean shot at the tumour and get the whole thing out. Any less and the future will not look so rosy.
In these situations my approach is to set my expectations low because the fallout from disappointment is not desirable. Upside will be greeting with cheer but feet still firmly on the ground. In other words I will continue to maintain the status quo and be boring
As this is a blog about my journey through cancer my next article will be on the emotional journey because it is a subject worthy of discussion and has been raised by a few people.
Thanks to everyone for the calls and texts of support it is good to know that you are thinking about me.
Tuesday 1 June 2010
Putting the Anaemia into Perspective
It was anaemia that triggered the path to diagnosis and the following puts some perspective on it.
It the three months up to December I was training regularly in the gym and ice-skating.
When I tried a run I could barely run a 10 minute mile and after a few runs I managed two miles in around nineteen and a half minutes. Pitiful when considering that I was light (at just over 11 stone) and when I was younger I could have run 4 six and a half minute miles without problem.
So today after three cycles of chemotherapy and nine pounds heavier with no proper training all year I ran two miles in less than nineteen minutes and without really making much effort. I started slowly and built it up.
It's a basic but encouraging start to getting fit before operation, but it has no meaning in the context of the results of tomorrow's CT scan. That is an different ball game.
Feet on the ground time.
It the three months up to December I was training regularly in the gym and ice-skating.
When I tried a run I could barely run a 10 minute mile and after a few runs I managed two miles in around nineteen and a half minutes. Pitiful when considering that I was light (at just over 11 stone) and when I was younger I could have run 4 six and a half minute miles without problem.
So today after three cycles of chemotherapy and nine pounds heavier with no proper training all year I ran two miles in less than nineteen minutes and without really making much effort. I started slowly and built it up.
It's a basic but encouraging start to getting fit before operation, but it has no meaning in the context of the results of tomorrow's CT scan. That is an different ball game.
Feet on the ground time.
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