Whilst week has been busy on the treatment front, it has been quiet on the children front.
The kids have been with my parents in South Wales, which has helpful in letting us strike into the new routine of daily treatment.
We miss the children a lot but we have also been able to spend a little time with each other. Effects of the treatment aside, the evenings have been more relaxed and yesterday we found some time to go for a stroll and a little time to indulge her with some shopping.
So, nothing particularly exciting but we have the weekend in front of us and as I pull out of the chemo-lag we will be able to enjoy some freedom whilst also looking forward to the childrens' return on Monday.
Saturday, 31 July 2010
Into a New Phase
After the melodrama of Wednesday it has just been a case of settling into a new phase.
At the beginning of this blog I talked about not seeing this journey as a "battle against cancer" rather as the cancer being an intrinsic element of me that must be overcome.
In my very first post I talked about the journey being one of finding some emotional silence. By this I mean smoothing out some of the rough edges of myself to find more peace and calmness in my life. I will never be completely even-tempered, or "Mr Chill Pill" because that is not my nature and it never is my business to try and change my nature. So, in many ways, Wednesday personified a reversion to type against a backdrop of proactive measures that I have tried to instill to make the journey smoother.
Of course, I have always considered there to be battles to be fought along the path, but rather than seeing them as battles with the disease I see them as battles with myself. It is no different to if you are trying to hit a major deadline at work or whether you are trying to get your children to school on time. In any such scenario there are events that can conspire to work against you and which you must overcome to assert your will.
In my mind that was what Wednesday was about. All roads leading to the next phase of combined chemotherapy and radiotherapy treatment but "no free entry by the gatekeeper".
Some of the circumstances would have seemed innocuous given the fact that I had previously strolled through much worse. For example, I teetered through a reduced chemotherapy session (one that was one and a half hours rather than the initial nine and a half hours) but the difficulties I experienced were a combination of a number of different factors.
The point of all this is that it is good for the psyche to come through a rough day but with everything on track.
Some of the decisions I made, such as not going ahead with the blood transfusion with a borderline haemoglobin reading, may prove not to have been in my favour but can be redressed as early as next week if needs be.
There are battles to be fought but there isn't a war.
What I have tried to do all of the way through the process is to try and get one step ahead of the game whilst acknowledging that the cancer was already several steps ahead of me upon diagnosis.
It is clear that my case is considered to the negative side of borderline. That is easily deduced from the fact that when my operation was "deferred" in July the surgeon asked for me to be considered as a locally advanced case. In a nutshell, that means that the results from the initial treatment were not good enough and the nodal infection (i.e. outside the oesophageal wall - e..g between the lungs) was not brought under control enough.
That said, I have always felt very positive about the introduction of radiotherapy treatment. It is a targeted treatment that whilst not effective on its own with oesophageal cancer may prove to be exactly what I need in taking the initial treatment further down the road.
The initial treatment may not have achieved the desired targets but it did create improvement in my condition and the macro trend is heading in the right direction.
At the beginning of this blog I talked about not seeing this journey as a "battle against cancer" rather as the cancer being an intrinsic element of me that must be overcome.
In my very first post I talked about the journey being one of finding some emotional silence. By this I mean smoothing out some of the rough edges of myself to find more peace and calmness in my life. I will never be completely even-tempered, or "Mr Chill Pill" because that is not my nature and it never is my business to try and change my nature. So, in many ways, Wednesday personified a reversion to type against a backdrop of proactive measures that I have tried to instill to make the journey smoother.
Of course, I have always considered there to be battles to be fought along the path, but rather than seeing them as battles with the disease I see them as battles with myself. It is no different to if you are trying to hit a major deadline at work or whether you are trying to get your children to school on time. In any such scenario there are events that can conspire to work against you and which you must overcome to assert your will.
In my mind that was what Wednesday was about. All roads leading to the next phase of combined chemotherapy and radiotherapy treatment but "no free entry by the gatekeeper".
Some of the circumstances would have seemed innocuous given the fact that I had previously strolled through much worse. For example, I teetered through a reduced chemotherapy session (one that was one and a half hours rather than the initial nine and a half hours) but the difficulties I experienced were a combination of a number of different factors.
The point of all this is that it is good for the psyche to come through a rough day but with everything on track.
Some of the decisions I made, such as not going ahead with the blood transfusion with a borderline haemoglobin reading, may prove not to have been in my favour but can be redressed as early as next week if needs be.
There are battles to be fought but there isn't a war.
What I have tried to do all of the way through the process is to try and get one step ahead of the game whilst acknowledging that the cancer was already several steps ahead of me upon diagnosis.
It is clear that my case is considered to the negative side of borderline. That is easily deduced from the fact that when my operation was "deferred" in July the surgeon asked for me to be considered as a locally advanced case. In a nutshell, that means that the results from the initial treatment were not good enough and the nodal infection (i.e. outside the oesophageal wall - e..g between the lungs) was not brought under control enough.
That said, I have always felt very positive about the introduction of radiotherapy treatment. It is a targeted treatment that whilst not effective on its own with oesophageal cancer may prove to be exactly what I need in taking the initial treatment further down the road.
The initial treatment may not have achieved the desired targets but it did create improvement in my condition and the macro trend is heading in the right direction.
Thursday, 29 July 2010
Peace and Quiet
First off, a happy birthday to my god-daughter who I have renamed as the milky bar kid due to her latest pregnancy fetish. Less than a month to go for her now!
Today, is as far removed a day from yesterday as possible.
After having a snooze yesterday evening I felt like a different man. It felt as if a lot of different roads had led me to yesterday. The start of the combined treatment of chemotherapy and radiotherapy is the big hope and so, in retrospect, it was a big day.
In my thoughts, at the time, it was just another day but the cocktail of events proved it to a real roller coaster. A better metaphor would be a bungee jump; up and down, sideways and spinning.
The beauty of being treated at a hospital like the Marsden is their willingness to react to a changing picture on the spot.
I was in a hallway when I bumped into my specialist nurse to ask when the the blood transfusion was still required and what time it would be. She said that because I was borderline (after the latest result showed the blood count had risen the cusp) I should really have one "but you don't want one do you". I told her that I was willing to have one but would prefer to do it when and if I fell below the requirement. She rang and cancelled the blood order and then rang the doctor to get approval for my chemotherapy to go ahead after the drastic reversal in my blood counts.
The point is that all this took place in a corridor. Everyone is at the Marsden for the same reason, so there is no reason to feel uncomfortable about scenarios like this. You know that everyone is doing their best for you and listening to what you feel about things and acting immediately.
In reality I probably should have taken the blood transfusion to make sure that I get the best out of the radiotherapy, but my bloods will be done again next week and I will be in better physical shape to take it on board.
I haven't got anything against taking others blood and will be grateful for it. Psychologically though I feel that I do not want to let go of that control. I want to get my blood better. I will not shirk though if things dip again.
On this note I should mention that there has been more than one family offer of blood since I made my original point. That is very generous and I am grateful. Pyschologically, it would be a much better option that taking a strangers blood, but the blood is carefully screened to today and there is a big pool to ensure that the match is as I need it at that time.
There is a general point here about the blog and peoples' reaction to it. On one level the blog is meant to act as a quick source of information when I have key appointments. On another level it is meant to be cathartic for me and is meant to be an honest and open account of what it is like to journey through this experience.
Days like yesterday though can be unnecessarily disturbing for those around me and my aim isn't to upset anyone. It is a difficult subject though and I try to write and deliver a message which is reflective of what I know or feel to be happening. The drama in the day was real and not a matter of conjecture or supposition and it shows how violently things can swing around.
Here I am a day later and I am feeling fine. I am a little bit queasy with yesterday's chemotherapy but there is no sickness and no bad back either (though I will still be paying a precautionary visit to the mad Canadian on his return). So if you take yesterday and the day before from today's perspective then yes it was up and down but ultimately it has gone to plan. I've started my radiotherapy and had my chemotherapy and everything is on track.
It's not quite "happy dayz", but it is in the modus operandus - Go Forward!
Today, is as far removed a day from yesterday as possible.
After having a snooze yesterday evening I felt like a different man. It felt as if a lot of different roads had led me to yesterday. The start of the combined treatment of chemotherapy and radiotherapy is the big hope and so, in retrospect, it was a big day.
In my thoughts, at the time, it was just another day but the cocktail of events proved it to a real roller coaster. A better metaphor would be a bungee jump; up and down, sideways and spinning.
The beauty of being treated at a hospital like the Marsden is their willingness to react to a changing picture on the spot.
I was in a hallway when I bumped into my specialist nurse to ask when the the blood transfusion was still required and what time it would be. She said that because I was borderline (after the latest result showed the blood count had risen the cusp) I should really have one "but you don't want one do you". I told her that I was willing to have one but would prefer to do it when and if I fell below the requirement. She rang and cancelled the blood order and then rang the doctor to get approval for my chemotherapy to go ahead after the drastic reversal in my blood counts.
The point is that all this took place in a corridor. Everyone is at the Marsden for the same reason, so there is no reason to feel uncomfortable about scenarios like this. You know that everyone is doing their best for you and listening to what you feel about things and acting immediately.
In reality I probably should have taken the blood transfusion to make sure that I get the best out of the radiotherapy, but my bloods will be done again next week and I will be in better physical shape to take it on board.
I haven't got anything against taking others blood and will be grateful for it. Psychologically though I feel that I do not want to let go of that control. I want to get my blood better. I will not shirk though if things dip again.
On this note I should mention that there has been more than one family offer of blood since I made my original point. That is very generous and I am grateful. Pyschologically, it would be a much better option that taking a strangers blood, but the blood is carefully screened to today and there is a big pool to ensure that the match is as I need it at that time.
There is a general point here about the blog and peoples' reaction to it. On one level the blog is meant to act as a quick source of information when I have key appointments. On another level it is meant to be cathartic for me and is meant to be an honest and open account of what it is like to journey through this experience.
Days like yesterday though can be unnecessarily disturbing for those around me and my aim isn't to upset anyone. It is a difficult subject though and I try to write and deliver a message which is reflective of what I know or feel to be happening. The drama in the day was real and not a matter of conjecture or supposition and it shows how violently things can swing around.
Here I am a day later and I am feeling fine. I am a little bit queasy with yesterday's chemotherapy but there is no sickness and no bad back either (though I will still be paying a precautionary visit to the mad Canadian on his return). So if you take yesterday and the day before from today's perspective then yes it was up and down but ultimately it has gone to plan. I've started my radiotherapy and had my chemotherapy and everything is on track.
It's not quite "happy dayz", but it is in the modus operandus - Go Forward!
Wednesday, 28 July 2010
Through the Mill - But Out Safely
I am not really sure what happened with the whole blood count thing and I don't think anybody is, but it is the result that counts.
Whether someone was praying with utter conviction to God, to Allah or holding hands naked in a circle around Stonehenge chanting "Swordfish, Swordfish, Swordfish", I don't know but the rise in white blood count was dramatic by any standards and the rise in haemoglobin to the "break even" point was equally odd.
There was more to the day than I previously articulated because when I woke up this morning my back had gone again (the last time was at the beginning of this process when I was redeemed by the mad Canadian osteopath). I couldn't sit this morning for shooting pains from my knees to the top of my head but, fortunately, I was able to lie down for the radiotherapy treatment.
The radiotherapy unit is only two years old and has clearly been very well designed in look, feel and function. It is underground but feels light and airy and is full of straight lines and sweeping curves. It looks absolutely spotless and, like the rest of the hospital, has exceptional staff. In short it looks like a place of healing should do.
So in I walk.......
Everything about the process is explained clearly and when I walk into the treatment area it looks space age and its populace is four uniformed women. I am sure that I can hear "The Girl from Ipanema" piping through the sound system and padding of Kitten's feet just outside the door.
But oh, hang on a minute, I am here to have X-Rays shot through my lungs and hammer a rather large tumour in my oesophagus.
No word of a lie though, when the meticulous process of lining me up for treatment by the machine that rotates 360 degrees around my body has finished the treatment starts to the accompaniment of Abba "Take a Chance on me" piping through the sound system. There was a backlit blue sky and tree picture to look at on the ceiling too.
My back held it together for the 20 mins or so and that is as good as the day got.
I was feeling nauseas all day, which is very unusual for this stage of the process. It can perhaps be linked to a combination of not having eaten much this morning, the disruption caused by the back problem and also the fact that, on chemo, I cannot stand the smell of the hospital. As soon as I smell it I see bags of chemotherapy drugs and can feel and taste their slow "drip drip drip".
Chemo was at 3pm so Kitten and I came back to the house and I tried to get some "scram" down me to mask the nausea. Unfortunately, it didn't work and I walked straight into the hospital, straight into the toilets and was ill.
As soon as the chemotherapy process started when the saline went in I was ill again. The nurses were really gentle with me, but this wasn't the same man (or Swordfish) who breezed through nine and a half hours of chemo on his first outing.
I managed to hold it together for the rest of the process but came home looking greener than the finest welsh leek.
I've since had a good sleep and am back to reasonable form.
Once again, I have gone from saying how good I felt the other day right into a bit of turbulence, but I have got the right result and that is all I care about.
Kitten was a superstar today and she even tolerated me doing a couple of things for work despite hardly talking to her all day!
Thanks to everyone for the good vibes.
Now I hope that my back can hold out until its erstwhile saviour (the mad Canadian) is back in town.
Whether someone was praying with utter conviction to God, to Allah or holding hands naked in a circle around Stonehenge chanting "Swordfish, Swordfish, Swordfish", I don't know but the rise in white blood count was dramatic by any standards and the rise in haemoglobin to the "break even" point was equally odd.
There was more to the day than I previously articulated because when I woke up this morning my back had gone again (the last time was at the beginning of this process when I was redeemed by the mad Canadian osteopath). I couldn't sit this morning for shooting pains from my knees to the top of my head but, fortunately, I was able to lie down for the radiotherapy treatment.
The radiotherapy unit is only two years old and has clearly been very well designed in look, feel and function. It is underground but feels light and airy and is full of straight lines and sweeping curves. It looks absolutely spotless and, like the rest of the hospital, has exceptional staff. In short it looks like a place of healing should do.
So in I walk.......
Everything about the process is explained clearly and when I walk into the treatment area it looks space age and its populace is four uniformed women. I am sure that I can hear "The Girl from Ipanema" piping through the sound system and padding of Kitten's feet just outside the door.
But oh, hang on a minute, I am here to have X-Rays shot through my lungs and hammer a rather large tumour in my oesophagus.
No word of a lie though, when the meticulous process of lining me up for treatment by the machine that rotates 360 degrees around my body has finished the treatment starts to the accompaniment of Abba "Take a Chance on me" piping through the sound system. There was a backlit blue sky and tree picture to look at on the ceiling too.
My back held it together for the 20 mins or so and that is as good as the day got.
I was feeling nauseas all day, which is very unusual for this stage of the process. It can perhaps be linked to a combination of not having eaten much this morning, the disruption caused by the back problem and also the fact that, on chemo, I cannot stand the smell of the hospital. As soon as I smell it I see bags of chemotherapy drugs and can feel and taste their slow "drip drip drip".
Chemo was at 3pm so Kitten and I came back to the house and I tried to get some "scram" down me to mask the nausea. Unfortunately, it didn't work and I walked straight into the hospital, straight into the toilets and was ill.
As soon as the chemotherapy process started when the saline went in I was ill again. The nurses were really gentle with me, but this wasn't the same man (or Swordfish) who breezed through nine and a half hours of chemo on his first outing.
I managed to hold it together for the rest of the process but came home looking greener than the finest welsh leek.
I've since had a good sleep and am back to reasonable form.
Once again, I have gone from saying how good I felt the other day right into a bit of turbulence, but I have got the right result and that is all I care about.
Kitten was a superstar today and she even tolerated me doing a couple of things for work despite hardly talking to her all day!
Thanks to everyone for the good vibes.
Now I hope that my back can hold out until its erstwhile saviour (the mad Canadian) is back in town.
Smoke 'N' Mirrors - Back on Track
Sometimes drama just follows me around, today's events are a perfect example.
Yesterday my neutrophil reading was 0.44 and I cannot have chemotherapy below 1.00. My haemoglobin was 11.4 requiring a blood transfusion below 12.0.
I went to hospital today and was told that I would be having radiotherapy (which I have had) and that I would be having a blood transfusion and no chance of chemotherapy. The aim was simply to get me back on to tablet chemotherapy as soon as possible and have the intravenous as soon as my blood levels were back to some sort of normality.
By the time I came back from radiotherapy my blood test results were back from this morning.
My haemoglobin is up to 12.0, right on the borderline. So I don't need the transfusion though the probability is that I will need one next time as the trend is down.
My neutrophils count was bordering on the astonishing. It has gone up overnight from 0.44 to 6.11, which is the highest reading that I have had all the way through the process.
There is suspicion of a rogue reading, but the doctors have said that I can go ahead with my chemotherapy at 3pm.
Once again it can be seen that this process is constantly shifting and is full of smoke and mirrors, or at least, it is for me.
Yesterday my neutrophil reading was 0.44 and I cannot have chemotherapy below 1.00. My haemoglobin was 11.4 requiring a blood transfusion below 12.0.
I went to hospital today and was told that I would be having radiotherapy (which I have had) and that I would be having a blood transfusion and no chance of chemotherapy. The aim was simply to get me back on to tablet chemotherapy as soon as possible and have the intravenous as soon as my blood levels were back to some sort of normality.
By the time I came back from radiotherapy my blood test results were back from this morning.
My haemoglobin is up to 12.0, right on the borderline. So I don't need the transfusion though the probability is that I will need one next time as the trend is down.
My neutrophils count was bordering on the astonishing. It has gone up overnight from 0.44 to 6.11, which is the highest reading that I have had all the way through the process.
There is suspicion of a rogue reading, but the doctors have said that I can go ahead with my chemotherapy at 3pm.
Once again it can be seen that this process is constantly shifting and is full of smoke and mirrors, or at least, it is for me.
What's Going On?
So, it is off to the hospital shortly for blood tests.
Until I have those blood tests I won't have a clue as to whether I will have chemotherapy today. I am also unclear as to whether the radiotherapy will proceed unconditionally or whether I will need a blood transfusion first. I am assuming that it will go ahead, but I will ask on arrival.
The reason for the lack of clarity is that I was given the news of the blood tests yesterday and asked to go for a filgrastim boosting injection off the back of a telephone conversation with my specialist nurse. The questions I am posing above were not asked and I need to have a proper conversation with her or a doctor to find out what the plan is.
Until I have those blood tests I won't have a clue as to whether I will have chemotherapy today. I am also unclear as to whether the radiotherapy will proceed unconditionally or whether I will need a blood transfusion first. I am assuming that it will go ahead, but I will ask on arrival.
The reason for the lack of clarity is that I was given the news of the blood tests yesterday and asked to go for a filgrastim boosting injection off the back of a telephone conversation with my specialist nurse. The questions I am posing above were not asked and I need to have a proper conversation with her or a doctor to find out what the plan is.
Tuesday, 27 July 2010
Finding my Feet
It's obvious from my previous post that I didn't receive news about my blood tests very well.
On their own it is of no great concern, but it is the trend of news flow that is more important.
I am not particularly happy about the likelihood of blood transfusions and have been taking my iron tablets like clockwork to try and avoid them. I must admit to being surprised by the depth of the drop in my haemaglobin levels.
All that said, it is important to take these things on the chin and regain a sure footing quickly.
With my work internet down I cannot do anything on that front this afternon, so I have taken myself out into the garden and done some chi-kung an meditation for half and hour.
It is these moments where I find that something that drills the mind is very useful because it stops me from dwelling on the negative. A useful and constructive diversion.
As soon as Kitten gets back with the car I will be off for my injection. Here she is and off I go.
On their own it is of no great concern, but it is the trend of news flow that is more important.
I am not particularly happy about the likelihood of blood transfusions and have been taking my iron tablets like clockwork to try and avoid them. I must admit to being surprised by the depth of the drop in my haemaglobin levels.
All that said, it is important to take these things on the chin and regain a sure footing quickly.
With my work internet down I cannot do anything on that front this afternon, so I have taken myself out into the garden and done some chi-kung an meditation for half and hour.
It is these moments where I find that something that drills the mind is very useful because it stops me from dwelling on the negative. A useful and constructive diversion.
As soon as Kitten gets back with the car I will be off for my injection. Here she is and off I go.
More Bad News
There's no more appropriate title really.
If you read this blog regularly then you will know that I am optimistic by nature, but I also tell it how it is.
In simple terms the news is that my latest blood tests show that my next cycle of chemotherapy might be delayed and I may need a blood transfusion.
After the knock back of being pulled from curative surgery at the last moment I have began a new cycle of treatment and I am due to start the next cycle of chemotherapy tomorrow whilst initiating a new treatment programme of radiotherapy.
I have just been for blood tests and a consultation and my blood counts are not looking great.
The detail is that my neutrophils (white blood cells produced by the bone marrow to fight infection) stand at 0.4 and they have to be at least 0.5 to get into chemotherapy tomorrow. I will go to hospital later this afternoon to have an injection to see if we can get the count up tomorrow, otherwise the chemotherapy will be delayed. The neutrophil results are not a disaster because chemotherapy does take these counts lower and I have stood at 0.45 the day before chemotherapy before.
However, as if to exact a double whammy, my haemoglobin levels have also gone down below the level that is acceptable for radiotherapy. Haemoglobin is the element of the red blood cell that carries oxygen. Normal for a male is between 14 and 16. You may remember that upon diagnosis my level was 8 and went down further to 7.5, which is life-threatening and at transfusion levels. The haemoglobin levels have since rise back to normal and at the last count, on 5th July, stood at 13.8.
Radiotherapy requires that my haemobglobin levels are above 12 and below that I will need a blood transfusion. To be honest, I don't want anybody else's blood in my body but it looks as if I don't have a choice. My levels have descended considerably despite the fact that I am taking iron tablets every day. So it is "needs must when the devil rides".
The only good news I have had recently is that the treatment for my disease is still considered curable, but the rest of it is "drip drip drip" bad.
I guess that I will just have to dig deeper and harder.
If you read this blog regularly then you will know that I am optimistic by nature, but I also tell it how it is.
In simple terms the news is that my latest blood tests show that my next cycle of chemotherapy might be delayed and I may need a blood transfusion.
After the knock back of being pulled from curative surgery at the last moment I have began a new cycle of treatment and I am due to start the next cycle of chemotherapy tomorrow whilst initiating a new treatment programme of radiotherapy.
I have just been for blood tests and a consultation and my blood counts are not looking great.
The detail is that my neutrophils (white blood cells produced by the bone marrow to fight infection) stand at 0.4 and they have to be at least 0.5 to get into chemotherapy tomorrow. I will go to hospital later this afternoon to have an injection to see if we can get the count up tomorrow, otherwise the chemotherapy will be delayed. The neutrophil results are not a disaster because chemotherapy does take these counts lower and I have stood at 0.45 the day before chemotherapy before.
However, as if to exact a double whammy, my haemoglobin levels have also gone down below the level that is acceptable for radiotherapy. Haemoglobin is the element of the red blood cell that carries oxygen. Normal for a male is between 14 and 16. You may remember that upon diagnosis my level was 8 and went down further to 7.5, which is life-threatening and at transfusion levels. The haemoglobin levels have since rise back to normal and at the last count, on 5th July, stood at 13.8.
Radiotherapy requires that my haemobglobin levels are above 12 and below that I will need a blood transfusion. To be honest, I don't want anybody else's blood in my body but it looks as if I don't have a choice. My levels have descended considerably despite the fact that I am taking iron tablets every day. So it is "needs must when the devil rides".
The only good news I have had recently is that the treatment for my disease is still considered curable, but the rest of it is "drip drip drip" bad.
I guess that I will just have to dig deeper and harder.
Sunday, 25 July 2010
Getting Set
After a busy week we haven't done much this weekend.
Kitten and Boogle were both ill yesterday, so I took Huffy ice-skating and he had Boogle's lesson.
The Italian clan were there in full force. Happy birthday to "Superflo" for a couple of days ago.
With both chemotherapy and radiotherapy looming on Wednesday, my parents will be coming up from Wales tomorrow and taking the children back with them on Tuesday for about a week. That will allow Kitten and I to get the hang of things without distractions. I hope to be able to get a decent appointment time for my daily radiotherapy appointments, so that I can free up the day in the eventually that I am still able to operate at a decent level.
I am feeling strong going into this with only the increased eating difficulties being of cause for concern. This morning I felt very relaxed doing the chi-kung this morning and I will revisit an earlier analogy in explaining the relevance.
The simplest analogy for the initial benefits of chi-kung is to transform one's energy from what might be visualised as a "stormy sea" into calm waters, addressing the fragmentation of our daily lives. On the basis of that analogy then I am reaping benefits through regular practice.
A good frame of mind is the best thing that I can take into the next few weeks and getting plenty of rest is the best thing to add into the mix.
Kitten and Boogle were both ill yesterday, so I took Huffy ice-skating and he had Boogle's lesson.
The Italian clan were there in full force. Happy birthday to "Superflo" for a couple of days ago.
With both chemotherapy and radiotherapy looming on Wednesday, my parents will be coming up from Wales tomorrow and taking the children back with them on Tuesday for about a week. That will allow Kitten and I to get the hang of things without distractions. I hope to be able to get a decent appointment time for my daily radiotherapy appointments, so that I can free up the day in the eventually that I am still able to operate at a decent level.
I am feeling strong going into this with only the increased eating difficulties being of cause for concern. This morning I felt very relaxed doing the chi-kung this morning and I will revisit an earlier analogy in explaining the relevance.
The simplest analogy for the initial benefits of chi-kung is to transform one's energy from what might be visualised as a "stormy sea" into calm waters, addressing the fragmentation of our daily lives. On the basis of that analogy then I am reaping benefits through regular practice.
A good frame of mind is the best thing that I can take into the next few weeks and getting plenty of rest is the best thing to add into the mix.
Saturday, 24 July 2010
Shifting Sands
This session of chemotherapy has been interesting on a number of levels.
I have been working solidly throughout it and haven't really had a chance to rest much. That is about to change as it is time to ease back.
I have been a little more worried over the last week or so because the last three cycles of chemotherapy saw an immediate improvement in my ability to eat. On this cycle eating has, if anything, become more difficult. Of course, I am not on the trial drug any more so that could be a significator.
With the next cycle starting on Wednesday in conjunction with radiotherapy I need some positive action. The ability to eat in comfort is not the only gauge of what is going on but it is a ready made indicator, one that I can observe and feel.
In other ways things have been going very well. The fact that I have been able to work hard and efficiently shows that my energy levels are OK. Also the benefits of the chi-kung are starting to manifest. Finding tangible benefits from this can take a while and it requires a certain amount of faith that they will come.
When doing chi-kung this morning I noticed that was feeling in control. By that I mean that I felt relaxed and my mind felt quiet. This is a contrast to what I have had to do to get to this state. My normal state of mind is busy and it is difficult to quieten it and that is why I have been doing meditative "drills". It now seems that there is a certain amount of payback and the "monkey" is being brought to "heal".
I say that I need some positive action for my condition because the radiotherapy is the last thing that can be thrown at it in a medical sense in order to get me to the operating table. I have made many changes to my lifestyle but I still have the trump card of going onto permanent sickness from work as and when I need to. I hope that I don't have to do that until operation time as the work gives the mind a focus in its own right. I do have music as another "energy building" activity and my present to Boogle of DJing lessons as part of her birthday present have encouraged me to dust of the decks.
My DJ decks have remained in situ even though they haven't been used in earnest for a couple of years and there is something both therapeutic and energy building about working at mixing your favourite tunes. It will provide me with a trip down memory lane and an engagement with the soul in a different form. My day job is creative but it is logic based. Working with music is emotionally based and provides a useful counterbalance.
Every man needs a hobby!
I have been working solidly throughout it and haven't really had a chance to rest much. That is about to change as it is time to ease back.
I have been a little more worried over the last week or so because the last three cycles of chemotherapy saw an immediate improvement in my ability to eat. On this cycle eating has, if anything, become more difficult. Of course, I am not on the trial drug any more so that could be a significator.
With the next cycle starting on Wednesday in conjunction with radiotherapy I need some positive action. The ability to eat in comfort is not the only gauge of what is going on but it is a ready made indicator, one that I can observe and feel.
In other ways things have been going very well. The fact that I have been able to work hard and efficiently shows that my energy levels are OK. Also the benefits of the chi-kung are starting to manifest. Finding tangible benefits from this can take a while and it requires a certain amount of faith that they will come.
When doing chi-kung this morning I noticed that was feeling in control. By that I mean that I felt relaxed and my mind felt quiet. This is a contrast to what I have had to do to get to this state. My normal state of mind is busy and it is difficult to quieten it and that is why I have been doing meditative "drills". It now seems that there is a certain amount of payback and the "monkey" is being brought to "heal".
I say that I need some positive action for my condition because the radiotherapy is the last thing that can be thrown at it in a medical sense in order to get me to the operating table. I have made many changes to my lifestyle but I still have the trump card of going onto permanent sickness from work as and when I need to. I hope that I don't have to do that until operation time as the work gives the mind a focus in its own right. I do have music as another "energy building" activity and my present to Boogle of DJing lessons as part of her birthday present have encouraged me to dust of the decks.
My DJ decks have remained in situ even though they haven't been used in earnest for a couple of years and there is something both therapeutic and energy building about working at mixing your favourite tunes. It will provide me with a trip down memory lane and an engagement with the soul in a different form. My day job is creative but it is logic based. Working with music is emotionally based and provides a useful counterbalance.
Every man needs a hobby!
Wednesday, 21 July 2010
Children back in focus
We had one of our monthly visits to the child psychologist today.
She is still very pleased with how we are managing things and the kids seem to be as much at ease with the situation as can reasonably be expected.
They will be spending time at both sets of grand parents this holiday which will spare them some of the grind of me going to hospital five days a week.
The sessions still provide value in getting the kids to talk openly about what they are feeling and there is also an appreciation on both sides of the fence from Kitten and I.
Not only do we have to have differenct perspectives but the treatment plan keeps changing and the forum acts as a useful focal point for us to make sure that we have our act together before we go.
When I refer to different perspectives it is perhaps difficult to understand that comment from the outside, but it is easy to understand that there are always different priorities in any situation within a family. At the moment my first priority has to be my own recovery, but of course I still have to play my role in the family. Kitten perhaps has the tougher job of keeping the equilibrium on a daily basis. Naturally, the children don't understand the whole picture and their needs and my needs must be balanced out.
Then there is Kitten, of course. Her role is draining. She needs an appreciation and also and outlet. Joining a gym has been good for her because it takes her away from the house into some designated free time. As it happens she is out for an end-of-term meal with the school mum's tonight.
My years of party lifestyle mean that I have no great desires outside rehabilitation and day to day. I've been there seen it, done it and worn the t-shirt so am quite content (as much as a Swordfish can be).
I am happy to roll my social occasions into group events and, speaking of which, I have just got tickets for the Chelsea vs Manchester Utd Community Shield match at Wembley on Aug 8th for Notoplip, Sonic, Huffty and me.
Another good day out in the bag.
She is still very pleased with how we are managing things and the kids seem to be as much at ease with the situation as can reasonably be expected.
They will be spending time at both sets of grand parents this holiday which will spare them some of the grind of me going to hospital five days a week.
The sessions still provide value in getting the kids to talk openly about what they are feeling and there is also an appreciation on both sides of the fence from Kitten and I.
Not only do we have to have differenct perspectives but the treatment plan keeps changing and the forum acts as a useful focal point for us to make sure that we have our act together before we go.
When I refer to different perspectives it is perhaps difficult to understand that comment from the outside, but it is easy to understand that there are always different priorities in any situation within a family. At the moment my first priority has to be my own recovery, but of course I still have to play my role in the family. Kitten perhaps has the tougher job of keeping the equilibrium on a daily basis. Naturally, the children don't understand the whole picture and their needs and my needs must be balanced out.
Then there is Kitten, of course. Her role is draining. She needs an appreciation and also and outlet. Joining a gym has been good for her because it takes her away from the house into some designated free time. As it happens she is out for an end-of-term meal with the school mum's tonight.
My years of party lifestyle mean that I have no great desires outside rehabilitation and day to day. I've been there seen it, done it and worn the t-shirt so am quite content (as much as a Swordfish can be).
I am happy to roll my social occasions into group events and, speaking of which, I have just got tickets for the Chelsea vs Manchester Utd Community Shield match at Wembley on Aug 8th for Notoplip, Sonic, Huffty and me.
Another good day out in the bag.
Tuesday, 20 July 2010
It's All So Normal
Everything feels so normal at the moment.
Rather than working from home I have been into the office the last couple of days to help coordinate and drive a few issues into the ground. The accent now is on guiding others because I don't know how much the combination of radiotherapy and chemotherapy will hit me next week. There is still plenty of space for me to operate in but it will be useful to move away from deadlines and pressure because the next seven weeks are critical in me getting the result I need. I will only be allowed to go to the "treatment well" so often.
We had a lovely family anniversary and the kids made a real effort in helping prepare a meal. I should mention that anniversaries are rife at this time of the year. As well as Mr and Mrs "Butcher" celebrating their 40th last week, Sam the Eagle and his good lady celebrated last week and Showden is celebrating today. Congratulations to all of you.
So, life is normal, I feel good and I intend to enjoy myself before the next session starts.
I have noticed some change in myself and not all of it is good. For example, I walk past a pub just before I get to work and I have started to admire their hanging baskets. This hasn't happened to my up until now in my lifetime and I am not convinced that it is entirely normal for a boy from South Wales.
Seriously though, I am appreciating the simple things more like family, friends and sunny days.
When living life normally it is easy to constantly strive to change the things that you don't like which means that you can be hard on yourself and hard on those around you. I am beginning to see myself finding the enjoyment in things more and being pleased with completing tasks. Normally, I just dismiss the things I do (and sometimes others) because I am just focused on the next thing.
I guess that is what you call taking time to smell the roses.
So, if you hear of anyone getting arrested in London for sniffing hanging baskets outside a pub, you will now know who and why.
Rather than working from home I have been into the office the last couple of days to help coordinate and drive a few issues into the ground. The accent now is on guiding others because I don't know how much the combination of radiotherapy and chemotherapy will hit me next week. There is still plenty of space for me to operate in but it will be useful to move away from deadlines and pressure because the next seven weeks are critical in me getting the result I need. I will only be allowed to go to the "treatment well" so often.
We had a lovely family anniversary and the kids made a real effort in helping prepare a meal. I should mention that anniversaries are rife at this time of the year. As well as Mr and Mrs "Butcher" celebrating their 40th last week, Sam the Eagle and his good lady celebrated last week and Showden is celebrating today. Congratulations to all of you.
So, life is normal, I feel good and I intend to enjoy myself before the next session starts.
I have noticed some change in myself and not all of it is good. For example, I walk past a pub just before I get to work and I have started to admire their hanging baskets. This hasn't happened to my up until now in my lifetime and I am not convinced that it is entirely normal for a boy from South Wales.
Seriously though, I am appreciating the simple things more like family, friends and sunny days.
When living life normally it is easy to constantly strive to change the things that you don't like which means that you can be hard on yourself and hard on those around you. I am beginning to see myself finding the enjoyment in things more and being pleased with completing tasks. Normally, I just dismiss the things I do (and sometimes others) because I am just focused on the next thing.
I guess that is what you call taking time to smell the roses.
So, if you hear of anyone getting arrested in London for sniffing hanging baskets outside a pub, you will now know who and why.
Monday, 19 July 2010
Kitten and Swordfish 8th Anniversary
Today is the 8th Anniversary of Kitten and my Wedding.
I have made an early 6:00am dash from the house into the city to avoid the rush hour, given that I will currently be neutropenic (low immune system). So, I will be back early to celebrate eight years of marriage with the ever tolerant, ever forgiving, ever patient Kitten.
I have made an early 6:00am dash from the house into the city to avoid the rush hour, given that I will currently be neutropenic (low immune system). So, I will be back early to celebrate eight years of marriage with the ever tolerant, ever forgiving, ever patient Kitten.
Sunday, 18 July 2010
A Natural "Heir"
I took Huffty to a football birthday party for the "Little Dynamo" this morning and bumped into some of the usual suspects including Notoplip.
Notoplip, was surprised to see that my hair is pushing back thick and dark despite the recent chemotherapy and he told me that he wasn't happy about it at all!
I've given him comfort over recent months with my regular shaved thatch. Its unevenness whenever it goes beyond a week old must give him a sense of "hair empathy".
So here's the deal Notoplip. If for any reason I don't make it through this mess I promise to grow my thatch for a couple of weeks first and you can have me scalped and apply it as a generous coverage of your own bonce.
I won't be offended if you elect to take only parts and weave it into your own to give it a little more substance though I feel that the darker strands would rekindle the spirit of your youth and would keep my memory alive.
Of course, if there is such a thing as a spirit world, I would solemnly promise not to come back and,of course I wouldn't make it fall out utilising a stencil of a Welsh dragon whilst you were safely asleep. That sort of childish behaviour is well beyond me whether in this mortal coil or other
********* Reaches for book of magical incantations - Hmmmmmmm....Page 23 crop circles; there we go, Page 24 patterned hair configurations ************
I would bequeath my top lip to you too but I could also do with a collagen injection in that department.
Notoplip, was surprised to see that my hair is pushing back thick and dark despite the recent chemotherapy and he told me that he wasn't happy about it at all!
I've given him comfort over recent months with my regular shaved thatch. Its unevenness whenever it goes beyond a week old must give him a sense of "hair empathy".
So here's the deal Notoplip. If for any reason I don't make it through this mess I promise to grow my thatch for a couple of weeks first and you can have me scalped and apply it as a generous coverage of your own bonce.
I won't be offended if you elect to take only parts and weave it into your own to give it a little more substance though I feel that the darker strands would rekindle the spirit of your youth and would keep my memory alive.
Of course, if there is such a thing as a spirit world, I would solemnly promise not to come back and,of course I wouldn't make it fall out utilising a stencil of a Welsh dragon whilst you were safely asleep. That sort of childish behaviour is well beyond me whether in this mortal coil or other
********* Reaches for book of magical incantations - Hmmmmmmm....Page 23 crop circles; there we go, Page 24 patterned hair configurations ************
I would bequeath my top lip to you too but I could also do with a collagen injection in that department.
Sunday Philosophy
The following poem is close to my heart because the imagery is drawn from a childhood memory and because, although the poem is very simple, the philsophy which underpins it is not.
It written at the time of a lunar eclipse which is esoterically associated with new beginnings and change. It was written immediately after writing an equally simple but lyrical poem that I put on the blog in March The Spirit of Change
It written at the time of a lunar eclipse which is esoterically associated with new beginnings and change. It was written immediately after writing an equally simple but lyrical poem that I put on the blog in March The Spirit of Change
The imagery for the poem comes from an oak tree in a field where I lived in North London for a year during my childhood. I lived there from aged 8 to 9.
In the halcyon days when children weren't chaperoned to a battery of organised activities, we created fun from our own imaginations and physical experience in parks and fields and streams. A regular activity for boys (and also some girls) was tree-climbing.
The tree in question was an oak tree in a field adjacent to where I lived and, whilst it was easy to climb to a certain height, jumping was the only "safe" way back down.
I had become an expert on the smaller favoured tree in the park but the oak tree was for the older boys. Climbing it represented a quantum leap in progress and a willingness to risk getting hurt or stuck. As both children and adults we often face the challenge of taking a leap into the unknown. Adults often shy away unless circumstances convene to push them whereas children are often driven through the fear by the desire to achieve the end result.
Anyway, the foundations of poem are rooted in me drifting into sleep as a child dreaming about this tree and the prospect of climbing it. It is a memory of being in that twilight zone that existing between being awake and being asleep; that chasm where mythology lives.
The rest of it is simply about recognising that we all follow our own paths through life and the challenges that we face are unique in how they relate to our own experience. We don't always grow at the same rate and we often have diferent destinations. As the challenges come we either face them, adapt and overcome them and go forwards in life or we ignore them and at very best stand still.
The overriding sense is the concept of quantum change rather than the slow undulating change that can be absorbed into our lives. Change that requires courage, skill and an element of self-belief..
As regards more complex philosophy there are obvious parallels here with the "Tree of Life".
The Tree of Life is a philosphical concept that runs through many different religions (including Christianity). Some argue that it is present in ancient Egyptian mythology, but the fundaments of the Tree of Life that runs through modern philosophy have grown from its roots in Judaism, passing through the hands of the Hermetics into Christian society and then being adapted though magical societies that were rife in the latter part of the 19th century and early 20th century.
The modern day Tree of Life encompasses many different philosphies and religions and although I don't subscribe to any particular religion or philosophy I have found it very helpful in contemplating just about anything.
Father and Son - A Day Out
In the spirit of the last post, Huffty and I had a fabulous day out together yesterday.
Boogle was competing in a cheer leading competition in Nottingham so that left the doorway open for Huffty and I to spend some time together.
Being with both the kids is the norm but being in charge of just one of them makes life so much easier.
The car was in to have some work done, so Huffty and I took the train to the theme park and then rattled off one ride after another until our fast track tickets were exhausted. Standard queues for most of the good rides were in excess of an hour, so the fast track tickets did their job.
After three hours of Huffty's delight it was time to pick the car and a sizable bill to match.
I hit pain on the way home and had to rest so, after a brief snooze, I offered Huffty the choice of football in the garden or Shrek 3 in 3D. His choice of Shrek was an enlightened one. I have never seen him so engrossed in film before. It is a jolly romp that pays more than lip service to its 3D tag and I thought it worth watching just for the effects, which were stunning.
We shared the whole day just having fun and eating things that we shouldn't. It was a good opportunity to relax have fun and enjoy the father and son thing. In other words, I spoilt him rotten and feel no shame.
Meanwhile Boogle's team notched up another second place in the competition, well done to her and I hope that Kitten had as good a day with Boogle as I did Huffty. I get the feeling that mine was the better end of the deal though!
Boogle was competing in a cheer leading competition in Nottingham so that left the doorway open for Huffty and I to spend some time together.
Being with both the kids is the norm but being in charge of just one of them makes life so much easier.
The car was in to have some work done, so Huffty and I took the train to the theme park and then rattled off one ride after another until our fast track tickets were exhausted. Standard queues for most of the good rides were in excess of an hour, so the fast track tickets did their job.
After three hours of Huffty's delight it was time to pick the car and a sizable bill to match.
I hit pain on the way home and had to rest so, after a brief snooze, I offered Huffty the choice of football in the garden or Shrek 3 in 3D. His choice of Shrek was an enlightened one. I have never seen him so engrossed in film before. It is a jolly romp that pays more than lip service to its 3D tag and I thought it worth watching just for the effects, which were stunning.
We shared the whole day just having fun and eating things that we shouldn't. It was a good opportunity to relax have fun and enjoy the father and son thing. In other words, I spoilt him rotten and feel no shame.
Meanwhile Boogle's team notched up another second place in the competition, well done to her and I hope that Kitten had as good a day with Boogle as I did Huffty. I get the feeling that mine was the better end of the deal though!
Saturday, 17 July 2010
Time to Rally
I've got seven and a half weeks of treatment left before decisions are made as to whether I can be cured or not and things look and feel different in many ways.
There's no nervousness or anticipation of the unknown and no expectation.
A metaphorical climbing up three peaks with each one to represent each cycle of chemotherapy until I faced the "certainty" of surgery has replaced by another three hills.
This time when I get to the top of those hills I will not know what awaits me. It will either be the green pastures and the nourishing prospect of surgery and healing or it will be a climb into a deeper darker and more foreboding uncertainty.
None of this matters any more because climb I must and climb I will.
The treatment I receive will be no more than that. It is no longer the focus. For me the focus is on raising the spirit. It is important to me to do this climb with passion and hope and with joy.
Life is full of challenges and full of opportunity. Now is the time for me to enjoy what I already have and show a tenacity and desire to to more.
I know that it seems an odd thing to say but I enjoy the challenge. When considering that comment it is important to understand that I would not choose the pathway, but I accept that I am on it, so it is simply important for me to do my very best. In other words, I have "one of my heads on".
I cannot count on my body. The medical evidence has shown that its responsive is questionable, but I can count on the other qualities I have mentioned and my drive.
Up until now I have been pretty lucky with pain. Severe pain can sap the will and sap the physical strength.
Today has been unusual in that I have had to reach for the pain killers twice. I usually resist reaching for them at all because I figure that one day I might be needing them and the less they have been used the less the body will be au fait with them.
Pain only normally comes with tiredness and I have been busy today and this week, so perhaps it is time for some proper rest. When it comes it is an overbearing pain and one that I can tell could become so powerful as to be unlike anything that I have felt before. Naturally, I hope that it doesn't come to that.
So, I have come to a crossroads in my own mind. It is time to push towards the light and move away from the darkness of disease.
I've built a solid base camp and have plenty of "Sherpas" (they even change my duvet cover for me).
It is a bullish frame of mind because this is the time I have been waiting for along this journey to try and push through, it feels right and the timeframe of the treatment provides an arena for the event to take place in.
There's no nervousness or anticipation of the unknown and no expectation.
A metaphorical climbing up three peaks with each one to represent each cycle of chemotherapy until I faced the "certainty" of surgery has replaced by another three hills.
This time when I get to the top of those hills I will not know what awaits me. It will either be the green pastures and the nourishing prospect of surgery and healing or it will be a climb into a deeper darker and more foreboding uncertainty.
None of this matters any more because climb I must and climb I will.
The treatment I receive will be no more than that. It is no longer the focus. For me the focus is on raising the spirit. It is important to me to do this climb with passion and hope and with joy.
Life is full of challenges and full of opportunity. Now is the time for me to enjoy what I already have and show a tenacity and desire to to more.
I know that it seems an odd thing to say but I enjoy the challenge. When considering that comment it is important to understand that I would not choose the pathway, but I accept that I am on it, so it is simply important for me to do my very best. In other words, I have "one of my heads on".
I cannot count on my body. The medical evidence has shown that its responsive is questionable, but I can count on the other qualities I have mentioned and my drive.
Up until now I have been pretty lucky with pain. Severe pain can sap the will and sap the physical strength.
Today has been unusual in that I have had to reach for the pain killers twice. I usually resist reaching for them at all because I figure that one day I might be needing them and the less they have been used the less the body will be au fait with them.
Pain only normally comes with tiredness and I have been busy today and this week, so perhaps it is time for some proper rest. When it comes it is an overbearing pain and one that I can tell could become so powerful as to be unlike anything that I have felt before. Naturally, I hope that it doesn't come to that.
So, I have come to a crossroads in my own mind. It is time to push towards the light and move away from the darkness of disease.
I've built a solid base camp and have plenty of "Sherpas" (they even change my duvet cover for me).
It is a bullish frame of mind because this is the time I have been waiting for along this journey to try and push through, it feels right and the timeframe of the treatment provides an arena for the event to take place in.
Friday, 16 July 2010
A Different Perspective
I have used the same picture of the Welsh mountain Cadair Idris many times on my blog to illustrate the concept of my journey, so it is time for a different one.
I have mentioned that I intend to walk the mountain when I am better (with anyone who cares to join me), my last and only prior visit being about 1980.
In 1980 I walked it with my uncle (mother's brother) Gandalf, his wife Bee and her brother "Beard" whilst on holiday in North Wales. What I didn't know, but have since learned, is that the mountain has a special place in the hearts of another of my mother's brothers "The Butcher" and his wife "Mrs Butcher".
Click on the picture to see it in all its glory. I am especially drawn to the reflective quality of the lake in this picture.
Special mention to all their families and the magic coat and arctic fox clans too.
I have mentioned that I intend to walk the mountain when I am better (with anyone who cares to join me), my last and only prior visit being about 1980.
In 1980 I walked it with my uncle (mother's brother) Gandalf, his wife Bee and her brother "Beard" whilst on holiday in North Wales. What I didn't know, but have since learned, is that the mountain has a special place in the hearts of another of my mother's brothers "The Butcher" and his wife "Mrs Butcher".
Click on the picture to see it in all its glory. I am especially drawn to the reflective quality of the lake in this picture.
It seems that Mr and Mrs Butcher are regular visitors to the village at the foot of Cadair Idris and they have taken this picture whilst staying there last weekend for their Ruby wedding anniversary. So, firstly I hope that you both had a lovely anniversary and secondly, thanks for letting us share your view of the mountain. Perhaps I should say "thanks for giving us a 'butcher's'" (cockney rhyming slang - google it, if you don't understand!).
Whilst there is a certain poetry about the picture there is a certain poetry about the fact that the butcher plied his trade for many years whilst 2 of his 3 siblings were vegetarians. He also holds the honour on my mam's side of being the only one of the siblings who isn't coeliac and it is a good job too because he is mightly attached to the odd slice of cake and a bit of trifle.
I haven't really mentioned my family in Wales much but there is a strong relationship with all of my mother's side and also with some members of my father's side - my father's family is a large and sprawling family.
Despite the fact that I have lived in London since I was six, we have always been regular vistors back. Also the fact that and my mother and father are the eldest of both their families means that during my years in Wales my uncles and aunties felt like older brothers and sisters.
There has been a lot of support for me over this recent period emanating from the family and my thanks are expressed for it.
Lindylu, Yorkshire boy and Gandalf and Bee are marked with icons on the blog, but The butcher (who incidentally also likes to bake - I wonder if he makes candlesticks too?) is also keeping tabs on me, presumably sitting at his computer with a nice slice of fruit cake. Of course, I speak with them too and my mother is a natural conduit.
Family has always been important to me and, whilst I have lived in London for a long time my roots are with my family.
Thursday, 15 July 2010
Weighty Issues
So, at the end of last summer I decided that I was looking "lardy" at about 12st 8lb and I set a target of 11st 2lb which I hit before Christmas.
I held the weight there but when I was diagnosed I was told that I had to put on weight for two reasons
Personally, I thought this to be bad advice and took it with a "pinch of salt". So, I kept the base of my diet healthy but then ate what I liked.
The end result was that I got up to 12st and then started to think I might quickly shoot up a lot more if I carried on. So, when I finished the chemo, I started to ease back and thought I would maintain the weight. After all, loss of one stone would take me back to 11st..
Then they told me that I wouldn't be having the operation, which left me having put on a stone for no reason having deliberately taken it off in the autumn of last year.
I decided to lose weight and hit a median weight of 11 and a half stone when I restarted chemotherapy.
I've lost five pounds in the first week and so am almost on target, but today I was told to maintain my weight because the radiotherapy is now prepared around my current body shape.
What a load of bother.
I held the weight there but when I was diagnosed I was told that I had to put on weight for two reasons
- Because I would not be able to eat properly immediately after the operation and would likely loose at least half a stone (possibly a stone)
- Because my stomach would be much smaller after the operation and I would find it hard to put on weight
Personally, I thought this to be bad advice and took it with a "pinch of salt". So, I kept the base of my diet healthy but then ate what I liked.
The end result was that I got up to 12st and then started to think I might quickly shoot up a lot more if I carried on. So, when I finished the chemo, I started to ease back and thought I would maintain the weight. After all, loss of one stone would take me back to 11st..
Then they told me that I wouldn't be having the operation, which left me having put on a stone for no reason having deliberately taken it off in the autumn of last year.
I decided to lose weight and hit a median weight of 11 and a half stone when I restarted chemotherapy.
I've lost five pounds in the first week and so am almost on target, but today I was told to maintain my weight because the radiotherapy is now prepared around my current body shape.
What a load of bother.
More of the Medical
Whilst I was at the Marsden today for the preparatory radiotherapy scans they also organised my first radiotherapy appointment.
My first appointment will be on the same day as my next chemotherapy session, which is Wednesday 28th July.
They initially presented me with a 9:30am appointment, which is the same time as I start the chemotherapy. Whilst that isn't possible they have still arranged for me to have the radiotherapy whilst I am having the chemotherapy, so that I don't have to go to the hospital twice in the same day.
What this means is that whilst I have the chemotherapy dripping into me, I will have to wheel my little "chemo trolley" through to radiotherapy and be smashed by both simultaneously.
Mmmmmmmmm nice. I'm looking forward to that one!
My first appointment will be on the same day as my next chemotherapy session, which is Wednesday 28th July.
They initially presented me with a 9:30am appointment, which is the same time as I start the chemotherapy. Whilst that isn't possible they have still arranged for me to have the radiotherapy whilst I am having the chemotherapy, so that I don't have to go to the hospital twice in the same day.
What this means is that whilst I have the chemotherapy dripping into me, I will have to wheel my little "chemo trolley" through to radiotherapy and be smashed by both simultaneously.
Mmmmmmmmm nice. I'm looking forward to that one!
Scanning Trial
Yesterday I visited the hospital to be invited to participate in a trial.
This time there are no drugs involved in the trial rather it is the pioneering of a a new type of scanner.
Radiotherapy involves delivering X-Rays to the tumour. The process must be accurate to target the tumour but a margin must be left to ensure that the targe is hit allowing for the fact that the tumour moves as the patient breathes.
The preparation process usually involves a CT Scan which provides a cross sectional image of the body; much like a sliced loaf of bread.
The new scanner gives a 4D image much like a video showing the movement.
I may benefit a little from the trial but, like all trials, the main beneficiaries will be those who a receive the treatment after the results of the trial are reviewed.
Today I received both the standard scan and the 4D scan and I now have three pin-prick sized tattoos so that they know how to position me when I start radiotherapy treatment on the 28th.
This time there are no drugs involved in the trial rather it is the pioneering of a a new type of scanner.
Radiotherapy involves delivering X-Rays to the tumour. The process must be accurate to target the tumour but a margin must be left to ensure that the targe is hit allowing for the fact that the tumour moves as the patient breathes.
The preparation process usually involves a CT Scan which provides a cross sectional image of the body; much like a sliced loaf of bread.
The new scanner gives a 4D image much like a video showing the movement.
I may benefit a little from the trial but, like all trials, the main beneficiaries will be those who a receive the treatment after the results of the trial are reviewed.
Today I received both the standard scan and the 4D scan and I now have three pin-prick sized tattoos so that they know how to position me when I start radiotherapy treatment on the 28th.
Boogle Strikes a Chord
Kitten had a conversation with one of the teaching assistants at school yesterday afternoon.
Because it is nearing end of the year the children in Boogle's class were asked about their hopes and desires for the next year.
Many said what you would expect from 8 and 9 year old children e.g. a nice summer or a Xbox.
Boogle answered "for my dad to get better".
Like I say, I don't need any motivation, it is already there. Overcoming this aggressive disease would make me the best role model for my children and allow me to return them to what they deserve; a carefree childhood.
Because it is nearing end of the year the children in Boogle's class were asked about their hopes and desires for the next year.
Many said what you would expect from 8 and 9 year old children e.g. a nice summer or a Xbox.
Boogle answered "for my dad to get better".
Like I say, I don't need any motivation, it is already there. Overcoming this aggressive disease would make me the best role model for my children and allow me to return them to what they deserve; a carefree childhood.
Wednesday, 14 July 2010
Sea Change
When you are diagnosed with cancer there is a lot to take in both emotionally and from the depth and breadth of the treatments and diagnostics that you have to go through.
However, there comes a time in any process where the "new world" starts to become the norm. I feel that I am close to that point now.
There is value in being driven and in being passionate about recovery and it is important not to let that passion diminish. It is also important to enjoy your life without your illness affecting your every moment. It is my opinion that it is also healthy to be able to focus away from the illness and still live and breathe your life.
The illness is, of course, firmly established as part of each and every day because of the constant battery of appointments, medicines and changed working routine. However, I have endeavoured from the very start to try and maintain normal life as much as is reasonably possible.
Although I am at the start of a critical few weeks I feel relaxed again; it should be remembered though that the last time I made such a claim was the very day my hope of immediate operation was withdrawn. Incidentally, the operation was scheduled to have taken place today.
Being ill does not only present obstacles, it also presents opportunties. Most notably in presents opportunties for personal growth as the emotional challenges can be harsh and demanding.
On several occasions I have made reference to the more esoteric pathway I have created for myself during this period. I have continued to pursue avenues such as meditation, chi-kung and more simple fare like writing the blog (cathartic in its own right). These activities have provided respite and growth through an evolving framework and help me in very real, practical and tangible ways.
I usually practice meditation as part of chi-kung and it is in invaluable in keeping me in a "go forward" frame of mind. The mediations I perform are simple but are my own and have been evolved from my past and recent experience into dynamic frameworks that act as "drills". The process of repetition is strengthening in its own right.
There are many parallels that can be drawn between working with meditation and working with music because the process is always evolving and there are tangible and measurable results. When I was DJing I would experiment and then evolve what I liked into someting tangible and set. I would then perform and take those set pieces and experiment with them again in order to make them dynamic. The music would constantly change with new records the dynamics of the night and the audience and my own feelings, but always moving forward. So it is with meditation.
The meditation acts as a bedrock for me and a reference point on the journey through the illness without needing to be directly linked. It's primary benefit, like music is that it is a medium which does not need words but works on a different and deeper level, a soul level.
I am not drawn to phrases such as "positive thinking" but what I do falls into that sphere without being able to be considered as blind optimism.
My point is that we all wish to fulfil our dreams and aspirations but the most essential commodity is to grow and become better people. The illness presents me with a passage through which to travel as well as immediate and sometimes harsh challenges.
Given the levels of treatment that I will now be subjected to, it is clear that there will be lasting damage to my body beyond that of a major operation and that I cannot guarantee my successful emergence from the disease.
What I can do is to remain confident about the outcome and, whilst I do that, I can continue to work to be a better man, husband and father.
Who knows; sometime in the future I may even be willing to put a duvet cover on!
However, there comes a time in any process where the "new world" starts to become the norm. I feel that I am close to that point now.
There is value in being driven and in being passionate about recovery and it is important not to let that passion diminish. It is also important to enjoy your life without your illness affecting your every moment. It is my opinion that it is also healthy to be able to focus away from the illness and still live and breathe your life.
The illness is, of course, firmly established as part of each and every day because of the constant battery of appointments, medicines and changed working routine. However, I have endeavoured from the very start to try and maintain normal life as much as is reasonably possible.
Although I am at the start of a critical few weeks I feel relaxed again; it should be remembered though that the last time I made such a claim was the very day my hope of immediate operation was withdrawn. Incidentally, the operation was scheduled to have taken place today.
Being ill does not only present obstacles, it also presents opportunties. Most notably in presents opportunties for personal growth as the emotional challenges can be harsh and demanding.
On several occasions I have made reference to the more esoteric pathway I have created for myself during this period. I have continued to pursue avenues such as meditation, chi-kung and more simple fare like writing the blog (cathartic in its own right). These activities have provided respite and growth through an evolving framework and help me in very real, practical and tangible ways.
I usually practice meditation as part of chi-kung and it is in invaluable in keeping me in a "go forward" frame of mind. The mediations I perform are simple but are my own and have been evolved from my past and recent experience into dynamic frameworks that act as "drills". The process of repetition is strengthening in its own right.
There are many parallels that can be drawn between working with meditation and working with music because the process is always evolving and there are tangible and measurable results. When I was DJing I would experiment and then evolve what I liked into someting tangible and set. I would then perform and take those set pieces and experiment with them again in order to make them dynamic. The music would constantly change with new records the dynamics of the night and the audience and my own feelings, but always moving forward. So it is with meditation.
The meditation acts as a bedrock for me and a reference point on the journey through the illness without needing to be directly linked. It's primary benefit, like music is that it is a medium which does not need words but works on a different and deeper level, a soul level.
I am not drawn to phrases such as "positive thinking" but what I do falls into that sphere without being able to be considered as blind optimism.
My point is that we all wish to fulfil our dreams and aspirations but the most essential commodity is to grow and become better people. The illness presents me with a passage through which to travel as well as immediate and sometimes harsh challenges.
Given the levels of treatment that I will now be subjected to, it is clear that there will be lasting damage to my body beyond that of a major operation and that I cannot guarantee my successful emergence from the disease.
What I can do is to remain confident about the outcome and, whilst I do that, I can continue to work to be a better man, husband and father.
Who knows; sometime in the future I may even be willing to put a duvet cover on!
Tuesday, 13 July 2010
Duvet duvet you're so groovey!
Many of you know that Swordfish has a great aversion to DIY, house work, gardening and general domestic duties but even I was was amazed - and that's an understatement - by his antics last night.
Perhaps I should say lack of antics.
With the weather being so good the bed linen was washed, dried and aired all in one day. No one likes to re-make the bed and the huge duvet cover is always a battle. I often find myself lost in the volumes of material.
Old Sworders had a long day at work and the first week of chemotherapy is always difficult, so he announced he was off to bed but asked me where was the duvet. 'In the bedroom as always' I replied knowing it had no cover on it and knowing he was prompting me subtly to put a cover on it.
I followed up a few minutes later and entered the room to be confronted by Swordfish, in his pants, laying on the bed without any covers and the quilt still folded on the floor.
He smiled, I smiled back - kind of!
I picked up the quilt and placed it on the bed. With him still on it you understand.
He didn't move. Actually, he did raise his arms.
He continued to smile as I struggled with the cover and the subsequent shaking, fluffing and puffing of the quilt.
The process took a good 3 minutes and he just lay there and smiled, well, smirked I think.
I grimaced back.
To be honest, it was quite funny and mildly entertaining and I almost laughed but couldn't.
Wouldn't!
Never!
Perhaps I should say lack of antics.
With the weather being so good the bed linen was washed, dried and aired all in one day. No one likes to re-make the bed and the huge duvet cover is always a battle. I often find myself lost in the volumes of material.
Old Sworders had a long day at work and the first week of chemotherapy is always difficult, so he announced he was off to bed but asked me where was the duvet. 'In the bedroom as always' I replied knowing it had no cover on it and knowing he was prompting me subtly to put a cover on it.
I followed up a few minutes later and entered the room to be confronted by Swordfish, in his pants, laying on the bed without any covers and the quilt still folded on the floor.
He smiled, I smiled back - kind of!
I picked up the quilt and placed it on the bed. With him still on it you understand.
He didn't move. Actually, he did raise his arms.
He continued to smile as I struggled with the cover and the subsequent shaking, fluffing and puffing of the quilt.
The process took a good 3 minutes and he just lay there and smiled, well, smirked I think.
I grimaced back.
To be honest, it was quite funny and mildly entertaining and I almost laughed but couldn't.
Wouldn't!
Never!
Sunday, 11 July 2010
Terra Firma
After the malaise of an unwanted early morning start I had some breakfast, went back to bed and managed to regain all the sleep that I had "lost".
The effect was dramatic as it now feels like I am more or less through those first few nasty days.
It's not like returning to "normal" but everything feels easier and much more in control.
I have just done half an hour chi-kung in the garden and the ability to stay still, relaxed, focused and controlled for that length of time gives a confidence of me being back in charge rather than the drugs.
In reality not a lot has changed but the world looks like a completely different place to the one at 6:30 this morning. I've experienced similar moments in all of the cycles of chemotherapy that I have been through and they have all led to feeling progressively better.
I assume that is just the way it works for me.
The effect was dramatic as it now feels like I am more or less through those first few nasty days.
It's not like returning to "normal" but everything feels easier and much more in control.
I have just done half an hour chi-kung in the garden and the ability to stay still, relaxed, focused and controlled for that length of time gives a confidence of me being back in charge rather than the drugs.
In reality not a lot has changed but the world looks like a completely different place to the one at 6:30 this morning. I've experienced similar moments in all of the cycles of chemotherapy that I have been through and they have all led to feeling progressively better.
I assume that is just the way it works for me.
Simple Example of the Effect of Chemotherapy
Before explaining what I am doing blogging at 6:30am on a Sunday morning I thought that I would relate an experience that defines how disorienting the first few days of chemotherapy can be.
Because of the hot weather Kitten has stocked up on some ices for the kids.
In the heat of yesterday she offered me a Magnum lolly and my first thought was "mmmmmm...cold", my second was accompanied by a shift of the head to side, a squirming of the face and the taste of synthetic chemotherapy and a picture of the intravenous drip bag from whence it came.
Kitten perserved. "What about a Fruit Pastilles lolly". Now we are talking, I thought. I could see it in my mind's eye, suspended in mid-air with its layers of different colour and the sight of frosty ice defying the heat.
I could taste the green and the purple and the orange and then, like a battering ram, the synthetic taste of chemo. The two perspectives slogged it out with one another for a few seconds and the chemo battering ram smashed the illusion.
Unless the kids get there first then the lolly still has my name on it and, in another moment, the lolly would have won but it gives a feeling of what the first few days of a cycle can be like. The example of something that is so desirable in the situation being overrun by the effect of the chemotherapy gives a window into what can happen to simple feelings and choices and how difficult it can be to have any direction.
So, what on earth am I doing blogging at 6:30am on Sunday morning?
Well hopefully I will be going back to bed to sleep in a moment but I have been awake since 4:00am and got fed up of laying in bed wide awake.
I know that for many people waking in the night is a regular occurrence, but I am generally a good and heavy sleeper.
Part of the problem is intravenous steriod injection and subsequent oral intake (for the first few days). The effect seems to kick in a few days later.
Because of the hot weather Kitten has stocked up on some ices for the kids.
In the heat of yesterday she offered me a Magnum lolly and my first thought was "mmmmmm...cold", my second was accompanied by a shift of the head to side, a squirming of the face and the taste of synthetic chemotherapy and a picture of the intravenous drip bag from whence it came.
Kitten perserved. "What about a Fruit Pastilles lolly". Now we are talking, I thought. I could see it in my mind's eye, suspended in mid-air with its layers of different colour and the sight of frosty ice defying the heat.
I could taste the green and the purple and the orange and then, like a battering ram, the synthetic taste of chemo. The two perspectives slogged it out with one another for a few seconds and the chemo battering ram smashed the illusion.
Unless the kids get there first then the lolly still has my name on it and, in another moment, the lolly would have won but it gives a feeling of what the first few days of a cycle can be like. The example of something that is so desirable in the situation being overrun by the effect of the chemotherapy gives a window into what can happen to simple feelings and choices and how difficult it can be to have any direction.
So, what on earth am I doing blogging at 6:30am on Sunday morning?
Well hopefully I will be going back to bed to sleep in a moment but I have been awake since 4:00am and got fed up of laying in bed wide awake.
I know that for many people waking in the night is a regular occurrence, but I am generally a good and heavy sleeper.
Part of the problem is intravenous steriod injection and subsequent oral intake (for the first few days). The effect seems to kick in a few days later.
Saturday, 10 July 2010
Things to Do
Chemotherapy or no chemotherapy, there are always things to do.
I have been busy working during the latter part of the week but had to call the shifts a bit short due to the heat and its effect. Concentration is fairly limited until after the first few days too!
I did get out with the Boogle this morning, to get her back into ice-skating lessons. Our regular rink in North London is opening again in a week or so but I believe that there aren't any lessons available until the autumn. So, I have got Boogle a series of six lessons booked at our closest rink.
I had a skate with her this morning and the mother-in-law came along, as a spectator too. All this whilst Kitten took Huffty to football.
As the in-laws have only previously been referred to collectively as "The Outlaws" (a pun on the film "The Outlaw Josey Wales" and "The in-laws from North Wales"), Kitten's mum should be given a singular term of address. I will call her "Kitey" but the explanation for that term is beyond the scope of the blog; as is the enigma, herself.
Of course, I do Kitey a great disservice whislt she has been doing wonders for our little family over the last week. Kitey has flighted a weight off Kitten's shoulders this week, making the house run smoothly, entertaining the kids and helping in all departments. I hope that she has enjoyed her stay.
At least I didn't hospitalise her this morning on our walk to the train station. It is a ten minute walk for me in the morning, but I allowed an extra five minutes to allow for the heat and the company. With Boogle complaining and stopping for everything on the way I had to go ahead an buy tickets and Kitey looked particularly wacked by the time we got on the train. Maybe, I should give it twenty minutes if there is a next time!
I have had better sessions with Boogle ice-skating because a dad a few days into chemo and a daughter who is exhausted from staying up for an awards ceremony she attended the previous night is not a great combination.
Sometimes you just have to make the effort and the reward was seeing her confidence flow back when we got around to her lesson at midday.
I also bumped into a chap ("Tigger" - due to his continual jumping style) who we saw regularly at our central London winter venue. Thanks for Boogle's sunglasses, Tigger!
Breathing a little confidence into her makes the world of difference. On reflection, not much different to her dad or, I guess, most people.
I have been busy working during the latter part of the week but had to call the shifts a bit short due to the heat and its effect. Concentration is fairly limited until after the first few days too!
I did get out with the Boogle this morning, to get her back into ice-skating lessons. Our regular rink in North London is opening again in a week or so but I believe that there aren't any lessons available until the autumn. So, I have got Boogle a series of six lessons booked at our closest rink.
I had a skate with her this morning and the mother-in-law came along, as a spectator too. All this whilst Kitten took Huffty to football.
As the in-laws have only previously been referred to collectively as "The Outlaws" (a pun on the film "The Outlaw Josey Wales" and "The in-laws from North Wales"), Kitten's mum should be given a singular term of address. I will call her "Kitey" but the explanation for that term is beyond the scope of the blog; as is the enigma, herself.
Of course, I do Kitey a great disservice whislt she has been doing wonders for our little family over the last week. Kitey has flighted a weight off Kitten's shoulders this week, making the house run smoothly, entertaining the kids and helping in all departments. I hope that she has enjoyed her stay.
At least I didn't hospitalise her this morning on our walk to the train station. It is a ten minute walk for me in the morning, but I allowed an extra five minutes to allow for the heat and the company. With Boogle complaining and stopping for everything on the way I had to go ahead an buy tickets and Kitey looked particularly wacked by the time we got on the train. Maybe, I should give it twenty minutes if there is a next time!
I have had better sessions with Boogle ice-skating because a dad a few days into chemo and a daughter who is exhausted from staying up for an awards ceremony she attended the previous night is not a great combination.
Sometimes you just have to make the effort and the reward was seeing her confidence flow back when we got around to her lesson at midday.
I also bumped into a chap ("Tigger" - due to his continual jumping style) who we saw regularly at our central London winter venue. Thanks for Boogle's sunglasses, Tigger!
Breathing a little confidence into her makes the world of difference. On reflection, not much different to her dad or, I guess, most people.
Start of a Tough Regime
So, on Wednesday I started another nine weeks of treatment.
The game plan has changed from
The heat that we have been experiencing this week (31-32 degrees Celsius) is magnifying the effects of the chemo in both the queasiness of it and the fatigue, so if the weather keeps up then things will be really tough by the time I get to radiotherapy. I am counting on our British weather not being capable of such momentum and, although many would wish otherwise, I hope that I am right.
The uncertainty of whether I was still in a potentially curable position has been removed and that is of great relief, but it is a bit like "out of the frying pan and into fire". The first few days of chemotherapy are particularly uncomfortable, so it is always good to try and stay focused on the wider prize, no matter how difficult that seems at the moment.
A couple of days and I will be through this malaise and in truth I would probably feel worse if I had a bad cold, so there isn't much to moan about. It is good to have a moan now and again though.
The game plan has changed from
- Nine weeks of chemotherapy
- Six weeks break
- Surgery
- Ten weeks break
- Nine weeks of chemotherapy
- Eighteen weeks of just the trial drug
- Nine weeks of chemotherapy (completed)
- Five weeks break (completed)
- Nine weeks of chemotherapy including six weeks of radiotherapy (starting after the first three weeks)
- Reassessment to see if surgery is possible
The heat that we have been experiencing this week (31-32 degrees Celsius) is magnifying the effects of the chemo in both the queasiness of it and the fatigue, so if the weather keeps up then things will be really tough by the time I get to radiotherapy. I am counting on our British weather not being capable of such momentum and, although many would wish otherwise, I hope that I am right.
The uncertainty of whether I was still in a potentially curable position has been removed and that is of great relief, but it is a bit like "out of the frying pan and into fire". The first few days of chemotherapy are particularly uncomfortable, so it is always good to try and stay focused on the wider prize, no matter how difficult that seems at the moment.
A couple of days and I will be through this malaise and in truth I would probably feel worse if I had a bad cold, so there isn't much to moan about. It is good to have a moan now and again though.
Friday, 9 July 2010
Boogle's Birthday
My daughter was 9 on the same day as I went in for chemotherapy. Not a great birthday present for her, but Kitten and I brokered the news in advance.
Boogle can't have too much to complain about though as she was spoilt with an iPod Nano and some lovely presents, vouchers and money from lots of generous people! Her and Huffty also had a visit to "Build a Bear" after school on her birthday then there was the obligatory birthday party yesterday.
She has had a great time but, unfortunately, she is much more aware of my situation than Huffty is. She thinks about it more, dwells on it more but does not communicate quite as openly as we might like on the subject.
The coincidence of my treatment and the day of her birthday was not the best timing especially as it made it impractical for me to attend her birthday party in a hot room with lots of school kids (not the best way to avoid picking up infection)
I have said before that I find there not to be such ready made activities to interact with my daughter as my son - simply because kicking a football around is enough to keep him more than happy.
Boogle loves music and her iPod was a timely gift. She already has her own log on and personal area on the house PC, so I have created her own iTunes library so that she can manage all her own songs and downloads. A simple activity to explain to her and continue to nurture a feeling of independence.
However, my trump card is related to DJing. My decks have largely been idle since I finished DJing regularly but I know that both of the kids have been itching to get on them. So, as part of Boogle's birthday present I created "Daddy DJ Vouchers" with each one entitling her to an hour's lesson. This will give us some personal time, other than the ice-skating, and haul her in from the periphery; which is often where she prefers to be.
I am also organising some ice-skating lessons for her so that she does not lose the skills that she has already built up. I dare say that I will join her on the ice but will let her have one-on-one lessons as I have taken her to a level where her youth will now quickly see our standards diverge.
Boogle can't have too much to complain about though as she was spoilt with an iPod Nano and some lovely presents, vouchers and money from lots of generous people! Her and Huffty also had a visit to "Build a Bear" after school on her birthday then there was the obligatory birthday party yesterday.
She has had a great time but, unfortunately, she is much more aware of my situation than Huffty is. She thinks about it more, dwells on it more but does not communicate quite as openly as we might like on the subject.
The coincidence of my treatment and the day of her birthday was not the best timing especially as it made it impractical for me to attend her birthday party in a hot room with lots of school kids (not the best way to avoid picking up infection)
I have said before that I find there not to be such ready made activities to interact with my daughter as my son - simply because kicking a football around is enough to keep him more than happy.
Boogle loves music and her iPod was a timely gift. She already has her own log on and personal area on the house PC, so I have created her own iTunes library so that she can manage all her own songs and downloads. A simple activity to explain to her and continue to nurture a feeling of independence.
However, my trump card is related to DJing. My decks have largely been idle since I finished DJing regularly but I know that both of the kids have been itching to get on them. So, as part of Boogle's birthday present I created "Daddy DJ Vouchers" with each one entitling her to an hour's lesson. This will give us some personal time, other than the ice-skating, and haul her in from the periphery; which is often where she prefers to be.
I am also organising some ice-skating lessons for her so that she does not lose the skills that she has already built up. I dare say that I will join her on the ice but will let her have one-on-one lessons as I have taken her to a level where her youth will now quickly see our standards diverge.
Wednesday, 7 July 2010
A change of Scene
I was clear from chemotherapy by half past one this afternoon.
There is no trial drug (bevacizumab) now and the change from cisplatin to carboplatin due to tinnitus on the last cycle has removed three hours from the process.
Chemotherapy isn't great but it is much easier to deal with certainty and implied progress than it is to deal with uncertainty or worse.
I am back in good spirits and that started from finding out last Friday that I would receive radical treatment. I have since learned that radical is just another term for curative as a opposed to palliative but it is all good.
I haven't mentioned the weekend but it fits with the mood and on Saturday I went ice-skating with Boogle then later on Kitten and I got out for a night out on a River Boat disco down the Thames.
I treated myself to the most beer I have drunk all year (3 bottles of Peroni). It was a good and relaxing night and virtually everyone came off the boat completely hammered. I shan't make any named references but, of course, you know the people who are omnipresent :-) Good spirits were the order of the day and it was fun to watch, especially as everyone had to catch the train home from Waterloo. Many were incapable of recognising their stop on arrival and had to be cajoled off the train. All good stuff.
The mood was fractious on Sunday which is indicative of moving from 5 weeks of freedom from treatment back into the sausage machine. We moved back into chilled mode with a BBQ in the afternoon following an invite on Saturday night from the former "Worcester Park Beast" and his less fearsome good lady wife. Needless to say the omnipresent Notoplip and Sushi were in close proximity at all times.
There is no trial drug (bevacizumab) now and the change from cisplatin to carboplatin due to tinnitus on the last cycle has removed three hours from the process.
Chemotherapy isn't great but it is much easier to deal with certainty and implied progress than it is to deal with uncertainty or worse.
I am back in good spirits and that started from finding out last Friday that I would receive radical treatment. I have since learned that radical is just another term for curative as a opposed to palliative but it is all good.
I haven't mentioned the weekend but it fits with the mood and on Saturday I went ice-skating with Boogle then later on Kitten and I got out for a night out on a River Boat disco down the Thames.
I treated myself to the most beer I have drunk all year (3 bottles of Peroni). It was a good and relaxing night and virtually everyone came off the boat completely hammered. I shan't make any named references but, of course, you know the people who are omnipresent :-) Good spirits were the order of the day and it was fun to watch, especially as everyone had to catch the train home from Waterloo. Many were incapable of recognising their stop on arrival and had to be cajoled off the train. All good stuff.
The mood was fractious on Sunday which is indicative of moving from 5 weeks of freedom from treatment back into the sausage machine. We moved back into chilled mode with a BBQ in the afternoon following an invite on Saturday night from the former "Worcester Park Beast" and his less fearsome good lady wife. Needless to say the omnipresent Notoplip and Sushi were in close proximity at all times.
Tuesday, 6 July 2010
Demons Confronted
I have used the analogy for chemotherapy of the beast climbing a mountain and taking a drink at the lake - in the analogy the beast is me the drink is taken from the lake at the foot of the mountain. The mountain pictured is Cadair Idris in Wales. Each of the three previous chemotherapy cycles was imagined as a journey up a separate leg of a mountain range. I make no apologies for using the picture for 4th time on the blog because it works for me on many different levels.
One of the myths of Cadair Idris is that if you sleep at the summit you wake up as either a madman or a poet. It is about meeting with your demons and that is what the last week and a half has felt like.
If you look at this period I have gone from the expectation of surgery on 14th July to being back into chemotherapy and into radiotherapy with the possibility of curative surgery. The overall shift is not so severe and may be helpful in ensuring cure. Where the "demon" aspect comes in is that there has been a moving picture with the outlook veering between the potential of no possible cure to likely cure. This has emanated from the Marsden but I am a great believer that your external reality is a realisation of your internal state.
There has been a shift and a short but tough emotional journey in this period, a bit like sleeping on the top of Cadair Idris and battling against a howling wind in pitch black to keep a tent in place.
I am through and those who are close to me and have also felt it are through and the sun is peering through after the darkest hour.
It is said that it is the darkest hour before dawn. In Egyptian mythology it is the scarab (dung) beetle that pushes the dung ball (sun) through night into daylight ensuring its safe passage - I can assure you that I feel I have moved my fair share of sh*t over this period. It goes with the terrain but it is character building!
One of the myths of Cadair Idris is that if you sleep at the summit you wake up as either a madman or a poet. It is about meeting with your demons and that is what the last week and a half has felt like.
If you look at this period I have gone from the expectation of surgery on 14th July to being back into chemotherapy and into radiotherapy with the possibility of curative surgery. The overall shift is not so severe and may be helpful in ensuring cure. Where the "demon" aspect comes in is that there has been a moving picture with the outlook veering between the potential of no possible cure to likely cure. This has emanated from the Marsden but I am a great believer that your external reality is a realisation of your internal state.
There has been a shift and a short but tough emotional journey in this period, a bit like sleeping on the top of Cadair Idris and battling against a howling wind in pitch black to keep a tent in place.
I am through and those who are close to me and have also felt it are through and the sun is peering through after the darkest hour.
It is said that it is the darkest hour before dawn. In Egyptian mythology it is the scarab (dung) beetle that pushes the dung ball (sun) through night into daylight ensuring its safe passage - I can assure you that I feel I have moved my fair share of sh*t over this period. It goes with the terrain but it is character building!
Today and Tomorrow
Today's radiotherapy meeting well.
Whilst tthe oncology team suggested that cure from chemotherapy and radiotherapy was very unlikely due to the bulk and location of the tumour, radiotherapy clearly see it as a possiblity.
I will have six weeks of radiotherapy and it will be administerted five days a week. This will take place after the initial intravenous and tablet based chemotherapy cycle of three weeks. I will also take chemotherapy tablets every day (capecitabine) whilst the radiotherapy is on-going.
I feel very good about getting back into treatment and the obvious aim is to get to a position where cure is possible. Anything more is a bonus, anything less is a disaster.
It was suggested that I might be very tired by the end of the radiotherapy and that blood transfusions will be administered if by haemaglobin levels fall below 12. At last count my haemaglobin levels were 14.3 which is in the normal male range between 14-16. This should be put into perspective against my lows with anaemia at the beginning of the year of 7.5.
So, it is straight in to chemotherapy tomorrow; there is no peace for the wicked!
A tough period ahead but let's just say it would good to put this beast under pressure - I refer to the cancer, of course!
Whilst tthe oncology team suggested that cure from chemotherapy and radiotherapy was very unlikely due to the bulk and location of the tumour, radiotherapy clearly see it as a possiblity.
I will have six weeks of radiotherapy and it will be administerted five days a week. This will take place after the initial intravenous and tablet based chemotherapy cycle of three weeks. I will also take chemotherapy tablets every day (capecitabine) whilst the radiotherapy is on-going.
I feel very good about getting back into treatment and the obvious aim is to get to a position where cure is possible. Anything more is a bonus, anything less is a disaster.
It was suggested that I might be very tired by the end of the radiotherapy and that blood transfusions will be administered if by haemaglobin levels fall below 12. At last count my haemaglobin levels were 14.3 which is in the normal male range between 14-16. This should be put into perspective against my lows with anaemia at the beginning of the year of 7.5.
So, it is straight in to chemotherapy tomorrow; there is no peace for the wicked!
A tough period ahead but let's just say it would good to put this beast under pressure - I refer to the cancer, of course!
Monday, 5 July 2010
Today's Meeting - The Next Phase
A number of issues were cleared up by today's meeting.
Firstly, I will begin chemotherapy on Wednesday.
The chemotherapy cycle of three week will be followed by a course of radiotherapy. During the course of radiotherapy I will continue to take chemotherapy tablets (capecitabine) but will not have any intravenous whilst the radiotherapy is on-going. So, the treatments will not be concurrent, per se. I will know more about the radiotherapy after tomorrow' s meeting.
Perhaps the most significant points to come out of today's meeting is that last week's CT scan did not show any major tumour growth since the scan on the 2nd June. It was considered that the scan showed some growth but that it was somewhat subjective. The reason that I will be receiving the additional treatment is because of the tumour markers (in the blood samples) and the anecdotal evidence I provided.
It goes to show that it is worth vocalising everything that is going on because if I had not mentioned the recent problems I have been having then I may have gone straight to theatre only for the cancer to return quickly.
It's not great that chemotherapy starts on my daughter's birthday, but "beggars can't be choosers".
Overall though, perhaps things aren't quite as bad as they were beginning to look.
Firstly, I will begin chemotherapy on Wednesday.
The chemotherapy cycle of three week will be followed by a course of radiotherapy. During the course of radiotherapy I will continue to take chemotherapy tablets (capecitabine) but will not have any intravenous whilst the radiotherapy is on-going. So, the treatments will not be concurrent, per se. I will know more about the radiotherapy after tomorrow' s meeting.
Perhaps the most significant points to come out of today's meeting is that last week's CT scan did not show any major tumour growth since the scan on the 2nd June. It was considered that the scan showed some growth but that it was somewhat subjective. The reason that I will be receiving the additional treatment is because of the tumour markers (in the blood samples) and the anecdotal evidence I provided.
It goes to show that it is worth vocalising everything that is going on because if I had not mentioned the recent problems I have been having then I may have gone straight to theatre only for the cancer to return quickly.
It's not great that chemotherapy starts on my daughter's birthday, but "beggars can't be choosers".
Overall though, perhaps things aren't quite as bad as they were beginning to look.
Things Move up a Notch
In this afternoon’s meeting with the oncology team I will likely discover the reasoning behind my new treatment programme and more detail about it. I will probe gently to get an idea of the different strands of discussion that allowed the multi-disciplinary team meeting to come to their conclusions. I will have a clear idea of the new regime of chemotherapy and as to whether it will include the trial drug bevacizumab. I can then move on to tomorrow’s meeting with radiotherapy to discuss and learn about that treatment.
In some ways all of this is slightly irrelevant as, whilst acknowledging that the treatment is crucial to my recovery, I am also starting to feel that the only person who can pull me out of this disease is me. If my body is still willing then the treatment, the force of my will and the love and support that I am gratefully receiving will combine to release me from the disease.
The standard treatment has failed to get the cancer under control, so that makes me realise that the odds have moved considerably against me but I am acutely aware that it is the individual not the odds that is important ultimately.
In some ways all of this is slightly irrelevant as, whilst acknowledging that the treatment is crucial to my recovery, I am also starting to feel that the only person who can pull me out of this disease is me. If my body is still willing then the treatment, the force of my will and the love and support that I am gratefully receiving will combine to release me from the disease.
The standard treatment has failed to get the cancer under control, so that makes me realise that the odds have moved considerably against me but I am acutely aware that it is the individual not the odds that is important ultimately.
Friday, 2 July 2010
Radical Therapy
I got a call from the Marsden this afternoon asking me to attend a radiotherapy appointment on Tuesday. So I found out that it will be radical treatment in advance of my scheduled Monday meeting. The treatment will have the aim of still getting me to surgery and the ultimate aim of cure.
I will be receiving chemotherapy (to start next week) and radiotherapy to be scheduled.
The details will be sorted out next week.
So the best possible news that I could hope for. I guess it is going to be tough but, given that the situation has become serious it is best to throw as much at the disease as possible. That is much better than the alternative of palliative care. Given that I am generally in pretty good fettle the conversation could have gone something like this if only palliative care had been offered (click on the play button below):
I will be receiving chemotherapy (to start next week) and radiotherapy to be scheduled.
The details will be sorted out next week.
So the best possible news that I could hope for. I guess it is going to be tough but, given that the situation has become serious it is best to throw as much at the disease as possible. That is much better than the alternative of palliative care. Given that I am generally in pretty good fettle the conversation could have gone something like this if only palliative care had been offered (click on the play button below):
Keeping it Real
I had the CT Scan yesterday and it is now down to the Multi-Disciplinary Team meeting this afternoon to decide what they are going to do with me.
There has also been another letter giving a summary of Monday's appointment and it is stated that further treatment is either radical or palliative. It is also stated that the situation is serious.
Whilst I can assess what the different parties have told me and the correspondence I have received the only true marker I have is my ability to eat and how I feel.
On the eating front things have deterorirated noticeably since chemotherapy finished, but are no worse than before chemotherapy. The pragmatist would observe that isn't a good place to be after over two months of heavy toxic treatment designed to get the disease under control.
Of course that isn't the full picture. The tumour that affects the eating is only part of the equation and it is the nodal disease (i.e. outside the oesophagus) that is just as important.
The best that I expect is to start over with either more of the same chemotherapy or a combination of radiotherapy and chemotherapy.
None of this holds any fear. Any anxiety is founded in the possibily that the results of the scan show the disease to be too aggressive to cure and that treatment will be palliative (care not cure) from here on.
We will find out on Monday.
Meanwhile life continues as normal. Off to the gym at lunchtime and ice-skating tomorrow with Italian Clan Man and Boogle.
There has also been another letter giving a summary of Monday's appointment and it is stated that further treatment is either radical or palliative. It is also stated that the situation is serious.
Whilst I can assess what the different parties have told me and the correspondence I have received the only true marker I have is my ability to eat and how I feel.
On the eating front things have deterorirated noticeably since chemotherapy finished, but are no worse than before chemotherapy. The pragmatist would observe that isn't a good place to be after over two months of heavy toxic treatment designed to get the disease under control.
Of course that isn't the full picture. The tumour that affects the eating is only part of the equation and it is the nodal disease (i.e. outside the oesophagus) that is just as important.
The best that I expect is to start over with either more of the same chemotherapy or a combination of radiotherapy and chemotherapy.
None of this holds any fear. Any anxiety is founded in the possibily that the results of the scan show the disease to be too aggressive to cure and that treatment will be palliative (care not cure) from here on.
We will find out on Monday.
Meanwhile life continues as normal. Off to the gym at lunchtime and ice-skating tomorrow with Italian Clan Man and Boogle.
Thursday, 1 July 2010
Kitten Does Zumba?
I know it would be easy to assume that I am a lucky boy, but I believe that Zumba is a Latin dance based exercise class that is sweeping the country.
Back at the very beginining of the blog we discussed it because one of our esteemed customer contacts "Marmot" has been doing it for months. Sam the Eagle and I were threatening to practice our moves on our desks at work so that we could get in the spirit of it at our next project meeting. We would think we looked like Ricky Martin but we would probably look more like Ricky Gervais.
Shortly after, Sam the Eagle reported that Mrs Sam was a Zumba addict too.
Well now Kitten is getting in the Zumba way. Shake Kitten Shake.
Oh, by the way, I had my CT Scan today.
Anyway as I was saying.....Swordfish likes Zumba, Zumba, Zumba
Think I could DJ one of these, plenty of Latin toons in the box.
"Senor, vodka con Fanta Limon y hielo, por favor para mi". Second thoughts I had better make that a "Zumo de manzana".
Back at the very beginining of the blog we discussed it because one of our esteemed customer contacts "Marmot" has been doing it for months. Sam the Eagle and I were threatening to practice our moves on our desks at work so that we could get in the spirit of it at our next project meeting. We would think we looked like Ricky Martin but we would probably look more like Ricky Gervais.
Shortly after, Sam the Eagle reported that Mrs Sam was a Zumba addict too.
Well now Kitten is getting in the Zumba way. Shake Kitten Shake.
Oh, by the way, I had my CT Scan today.
Anyway as I was saying.....Swordfish likes Zumba, Zumba, Zumba
Think I could DJ one of these, plenty of Latin toons in the box.
"Senor, vodka con Fanta Limon y hielo, por favor para mi". Second thoughts I had better make that a "Zumo de manzana".
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