After feeling good and healthy yesterday it is great to feel the same today. I gives me a lift to think that I feel good now and the rest of the cycle has the potential to become easier.
I was surprised last night with a call from my GP. She is notoriously difficult to book an appointment with and it comes down to a Monday morning 8am scrum down on the telephone where you can book for the next two weeks ahead. The reason is simple, she's very good.
I missed the Monday morning opportunity and told the surgery, as she had suggested that I arrange an appointment ot "keep tabs" on my progess.
She listens to what you say and doesn't necessarily express outright opinons but is clever at guiding your thoughts in the right direction. I am lucky to have so many quality carers at so many different levels.
The only problem I had left was tinnitus, which is caused by one of the chemotherapy drugs (Cisplatin - the major one that takes 4 hours on the drip at the beginning of the cycle). This drug can be exchanged for another, so that is something to consider for the next cycle.
I took a visit back to the Canadian oesteopath because I have been treated successfully for tinnitus using cranial oesteopathy in the past (after having a DJing accident). Generally it is considered that you have to live with tinnitus and when I had it before it was very severe. I had an ear infection in both ears (in the middle ear) and the ears were also blocked, so having a screaming pitch sound in one of the ears for six weeks was disturbing. The worst aspects were that the tinnitus was waking me up in the night and I was also frightened that I had permanently damaged the ear (because of the volume that got shunted through it in the accident).
That puts a perspective on my current problem, which was mild by comparison.
I had a touch of tinnitus in the first cycle, but it didn't concern me because of what I had previously experienced. However, it has now been constant since day three of this cycle
The trip to the oesteopath has not cured it and perhaps that is asking a bit much as the problem is caused by the drug rather than by a mechanism. However, it has eased it significantly and enough so that it doesn't wake me up. I remember that last time I had the problem it took a couple of visits before it was remedied. Regardless, I am now in a much better place at night time and also have had an explanation of how the esoteric art of cranial osteopathy is mean to work (courtesy of the mad Canadian).
A good night's sleep and good health; all that is missing is a nice cold beer with condensation sliding down the outside of the bottle.
Thursday 29 April 2010
Wednesday 28 April 2010
Back Into the Light
On the 8th day there was light!
After a fairly difficult (but by no means disastrous) seven days the eighth day of the cycle has seen me back to a far better place.
I can taste my food without the all-pervading sense of chemotherapy and my energy levels are more controlled and less volatile. I did a day in the office and it passed without any difficulty.
I am hoping that I am through the worst that the cycle has to offer and can coast through the remaining thirteen days, ready to ramp it up one more time before the build up to the operation.
The last few days have been difficult, not because they were physically difficult, but because there was a desire on my part to stamp normality on the situation as quickly as possible (which can be a tad unrealistic). It ended in an outburst last night and I woke up feeling like a different person.
It's not a good thing to lose your composure, especially as it effects those close to you but a good part of this journey is psychological and I feel a lot lighter on my feet now that I have "Released the Beast".
After a fairly difficult (but by no means disastrous) seven days the eighth day of the cycle has seen me back to a far better place.
I can taste my food without the all-pervading sense of chemotherapy and my energy levels are more controlled and less volatile. I did a day in the office and it passed without any difficulty.
I am hoping that I am through the worst that the cycle has to offer and can coast through the remaining thirteen days, ready to ramp it up one more time before the build up to the operation.
The last few days have been difficult, not because they were physically difficult, but because there was a desire on my part to stamp normality on the situation as quickly as possible (which can be a tad unrealistic). It ended in an outburst last night and I woke up feeling like a different person.
It's not a good thing to lose your composure, especially as it effects those close to you but a good part of this journey is psychological and I feel a lot lighter on my feet now that I have "Released the Beast".
Busy Bee
First off, a happy birthday to Notoplip.
I had to think hard what to get him for his birthday. Perhaps I got it wrong. Perhaps it should have been a collagen injection? Anyway, Notoplip for the next four months you are the same age as me again!
Notoplip's birthday heralds a busy but relaxing weekend. First up, on Friday, will be a birthday meal out with SandD, Notoplip & Sushi, and Kitten.
On Saturday we are heading south towards Winchester to spend the day with "The Thatchers", who are the most congenial of hosts.
On Sunday it is BBQ time in the French Arrondisement at the "Coobees" followed by Monday's skate spectacular with the Italian clan.
Kitten will be making sure that I take plenty of time to rest too.
I had to think hard what to get him for his birthday. Perhaps I got it wrong. Perhaps it should have been a collagen injection? Anyway, Notoplip for the next four months you are the same age as me again!
Notoplip's birthday heralds a busy but relaxing weekend. First up, on Friday, will be a birthday meal out with SandD, Notoplip & Sushi, and Kitten.
On Saturday we are heading south towards Winchester to spend the day with "The Thatchers", who are the most congenial of hosts.
On Sunday it is BBQ time in the French Arrondisement at the "Coobees" followed by Monday's skate spectacular with the Italian clan.
Kitten will be making sure that I take plenty of time to rest too.
Monday 26 April 2010
Riding the Beast
My assumption that the second tranche of chemo would feel as if it had "layered" itself upon the first seems to be correct.
I say that without any degree of certainty but in the knowledge that things seem to be amplified.
Touches of tinnitus in the first cycle have manifested as being constant since early in this cycle (Friday). Difficulties with certain smells being overpowering have ramped up a few notches further. I opened the living room door and was hit by the smell of cleaning fluids from the bathroom in a way that even someone of the palate of Egon Ronay may not have experienced. Either that or it is a realisation of my own palate subdued for many years.
More than any one particular event the difference between this and the first cycle seems to be that the first cycle was like a big wave that washed over me but I stood firm and it passed. I let it go instinctively, but I immediately started preparing for the next wave because I knew that the only way to meet the next would be to travel with it.
Things still feel ok. Sure, the hair is looking flakey but I'm still looking and feeling robust. I haven't shaken off the chemical taste of the chemotherapy like I had at this point last time, but I am living with it well. My appetite is back and I eating well (even though it requires an effort) but the constant sense of chemicals does not promote the attractiveness of any particular food. I say "sense of chemicals" because it is not just the taste, there is a feeling throughout and particularly in the stomach. Swamped but swimming.
There are many other different facets to the experience, but what I have described probably gives an insight. None of it is particularly unbearable, but it is disorientating because it isn't part of my previous realm of experience.
I'll continue to flow with it but will be a little cautious about frittering away energy and I will continue to be very grateful that I have, so far, avoided any of the nastiness that is often associated with the treatment.
I imagine it will get tougher during the next cycle and some aspects of this phase may not be a joyride, but the healing process swirls on.
"The beast has taken a drink and is going up the mountain track".
I say that without any degree of certainty but in the knowledge that things seem to be amplified.
Touches of tinnitus in the first cycle have manifested as being constant since early in this cycle (Friday). Difficulties with certain smells being overpowering have ramped up a few notches further. I opened the living room door and was hit by the smell of cleaning fluids from the bathroom in a way that even someone of the palate of Egon Ronay may not have experienced. Either that or it is a realisation of my own palate subdued for many years.
More than any one particular event the difference between this and the first cycle seems to be that the first cycle was like a big wave that washed over me but I stood firm and it passed. I let it go instinctively, but I immediately started preparing for the next wave because I knew that the only way to meet the next would be to travel with it.
Things still feel ok. Sure, the hair is looking flakey but I'm still looking and feeling robust. I haven't shaken off the chemical taste of the chemotherapy like I had at this point last time, but I am living with it well. My appetite is back and I eating well (even though it requires an effort) but the constant sense of chemicals does not promote the attractiveness of any particular food. I say "sense of chemicals" because it is not just the taste, there is a feeling throughout and particularly in the stomach. Swamped but swimming.
There are many other different facets to the experience, but what I have described probably gives an insight. None of it is particularly unbearable, but it is disorientating because it isn't part of my previous realm of experience.
I'll continue to flow with it but will be a little cautious about frittering away energy and I will continue to be very grateful that I have, so far, avoided any of the nastiness that is often associated with the treatment.
I imagine it will get tougher during the next cycle and some aspects of this phase may not be a joyride, but the healing process swirls on.
"The beast has taken a drink and is going up the mountain track".
Sunday 25 April 2010
"Calmer"
Firstly, well done to Super Frank and Little John for their sterling efforts in completing the London Marathon today.
Super Frank, whilst you are whooping it up out on the lash, I do feel a certain sense of satisfaction in parting with my hard earned cash for you worthy charity cause. You will note that your time is just outside 10 minute mile pace (I'm afraid that is an earlier "running" gag covered on the page leading up to diagnosis), so I trust that you enjoyed your leisurely stroll through London :-)
Seriously though, well done to both of you. It is worth mentioning that whilst Super Frank did the marathon based on a well-executed and arduous training program, Litte John hasn't been able to train for the last seven weeks due to leg problems. Part of me wishes that he crawled over the line and he has the DVD to watch, but I can't see it as he is a resolute man.
Whilst I cannot claim to have headed to the giddy heights of running over twenty six miles today, I can lay claim to doing a bit of proper exercise. Teach's gentle ribbing about rollerblading with the Boogle prompted me to go ice-skating with her this morning and hopefully get back into some sort of regular routine. We enjoyed our time on the ice and it is one of those activivies that you don't notice how much energy you are expending. Being five days into a chemo cycle probably plays a part too. Whilst Little John was running in the marathon his wife ("Fifteen - Love") and children were spotted and engaged at the latter end of our skating session. It was good to see them before they headed to London to offer support to the man putting his body on the line.
That lunchtime activity paved the way to the end of my energetic outbursts this weekend but it was an articulation of a decent attempt to see out the first wave of this cycle, which has gone well. Sunday, afternoon I was allowed to fade into the background with a visit to Notoplip's and Sushi's for a BBQ. It is a great benefit to be able to chill without taking any responsibility for the kids for a couple of hours. Kitten will tell you that I do that all the time, but it is different being able to do that when you are out.
Not all aspects of being ill are unwelcome and one of the better things is that I am slightly removed from a life of getting up in the morning, jumping on a train, hiding in an office, jumping back on a train and going to bed.
I am still working but there is a little more time around the edges and just stepping into the garden in the morning to do some Chi Kung brings me closer to nature. On Saturday morning I had the family cat "Cookie" for company. He was sitting on top of the wooden frame of the childrens' swing, which is below our apple tree. He had been there only for a moment before he was joined by one magpie and then another. Watching the interplay between the magpies and Cookie passed the time, especially as it was a bit early for "my hoverfly" to put in an appearance.
Saturday, was a busy day for me and it was good to get out and about.
All in all, I am in a good place at the moment and the sadness that seemed to hang over the female members of my clan a couple of days ago has lifted. The energy returns quickly and with it the smiles.
I see the second phase of chemotherapy as being the most beneficial of the three pre-operative cycles. This is simply because the first is an acquaintance and the last is en-route to the big event. The second is the place to find the soul of this experience and crystallise it.
There cannot be a judgment on whether the future will dictate that reflection on these times will eventually reveal joy or sorrow, although the odds are stacked much more favourably with me now. I will stay as I am, happy and hopeful and will let nature exactly her ruthless and truthful judgment over the coming weeks, months and years.
After all, that is what she does.
Super Frank, whilst you are whooping it up out on the lash, I do feel a certain sense of satisfaction in parting with my hard earned cash for you worthy charity cause. You will note that your time is just outside 10 minute mile pace (I'm afraid that is an earlier "running" gag covered on the page leading up to diagnosis), so I trust that you enjoyed your leisurely stroll through London :-)
Seriously though, well done to both of you. It is worth mentioning that whilst Super Frank did the marathon based on a well-executed and arduous training program, Litte John hasn't been able to train for the last seven weeks due to leg problems. Part of me wishes that he crawled over the line and he has the DVD to watch, but I can't see it as he is a resolute man.
Whilst I cannot claim to have headed to the giddy heights of running over twenty six miles today, I can lay claim to doing a bit of proper exercise. Teach's gentle ribbing about rollerblading with the Boogle prompted me to go ice-skating with her this morning and hopefully get back into some sort of regular routine. We enjoyed our time on the ice and it is one of those activivies that you don't notice how much energy you are expending. Being five days into a chemo cycle probably plays a part too. Whilst Little John was running in the marathon his wife ("Fifteen - Love") and children were spotted and engaged at the latter end of our skating session. It was good to see them before they headed to London to offer support to the man putting his body on the line.
That lunchtime activity paved the way to the end of my energetic outbursts this weekend but it was an articulation of a decent attempt to see out the first wave of this cycle, which has gone well. Sunday, afternoon I was allowed to fade into the background with a visit to Notoplip's and Sushi's for a BBQ. It is a great benefit to be able to chill without taking any responsibility for the kids for a couple of hours. Kitten will tell you that I do that all the time, but it is different being able to do that when you are out.
Not all aspects of being ill are unwelcome and one of the better things is that I am slightly removed from a life of getting up in the morning, jumping on a train, hiding in an office, jumping back on a train and going to bed.
I am still working but there is a little more time around the edges and just stepping into the garden in the morning to do some Chi Kung brings me closer to nature. On Saturday morning I had the family cat "Cookie" for company. He was sitting on top of the wooden frame of the childrens' swing, which is below our apple tree. He had been there only for a moment before he was joined by one magpie and then another. Watching the interplay between the magpies and Cookie passed the time, especially as it was a bit early for "my hoverfly" to put in an appearance.
Saturday, was a busy day for me and it was good to get out and about.
All in all, I am in a good place at the moment and the sadness that seemed to hang over the female members of my clan a couple of days ago has lifted. The energy returns quickly and with it the smiles.
I see the second phase of chemotherapy as being the most beneficial of the three pre-operative cycles. This is simply because the first is an acquaintance and the last is en-route to the big event. The second is the place to find the soul of this experience and crystallise it.
There cannot be a judgment on whether the future will dictate that reflection on these times will eventually reveal joy or sorrow, although the odds are stacked much more favourably with me now. I will stay as I am, happy and hopeful and will let nature exactly her ruthless and truthful judgment over the coming weeks, months and years.
After all, that is what she does.
Saturday 24 April 2010
A Motivational Image - Philosophy Corner
After my last post you could be forgiven for thinking that the mood is down, but that isn't the case. I have played my way nicely through the first difficult days of chemotherapy and the mood in the Swordfish camp is good and the smiles are back in all corners of the household.
I have been meaning to make use of the following image for quite a while as it connects with me on a number of different levels. I found it on the web when looking for an image to add colour to a concept. I have been given permission to reproduce it here by a very nice German man who took it on is holiday.
Personally, I think that it is a beautiful perspective of the Welsh mountain, Cadair Idris.
The fundament of the analogy that this piece is based on comes from an unusual source, which is dealing in shares. It was based on a discussion with the only person on the list of public followers of the blog who I have never met, "Barcap". You will note that his ID picture has a similar theme. Barcap's name is indicative of field that he worked in for many years and in recent times he has been making his own recovery from ill-health but has been going about it in an altruistic way.
I have been meaning to make use of the following image for quite a while as it connects with me on a number of different levels. I found it on the web when looking for an image to add colour to a concept. I have been given permission to reproduce it here by a very nice German man who took it on is holiday.
Personally, I think that it is a beautiful perspective of the Welsh mountain, Cadair Idris.
The basic tenet of the analogy is that sometimes things have to go down to find a base (support) from which to operate before going resuming an upward path. Our speak was "The Beast is going down to the river to take a drink and rest before continuing up the mountain path". I am sure you can imagine that this was elaborated on a lot with "frightened fishes" when the beast stuck his head under water (people selling unnecessarily) and all sorts of other whimsical deviations.- any excuse to wax lyrical. However, the analogy works for me in a number of ways.
When looking at the picture as an articulation of where I have been the last few days, or whether looking at it from the principle of the journey as a whole, imagine me as "The Beast" looking from the perspective of the first hill down into the lake.
If the perspective is of the last few days then the lake is the chemo; a necessary stop off which, whilst seemingly unwelcome, is an essential on the continuous path of healing; up the mountain track.
If the perspective is of my life then the lake is the cancer, which is bringing me to rest (or to "heel") to consider and re-evaluate the onward journey of my life; up the mountain track.
The image of Cadair Idris holds a special place for me. I walked the mountain many years ago when I was 15 or 16 with Gandalf, Bee and Bee's brother and remember seeing the view of the lake from up the mountain. It is a powerful and magnetic draw on the soul and is in many ways symbolic of the magical and mystical aura that has perpetuated around the mountain.
Legend has it that Idris, King of Meirionydd or Idris Gawr (Idris the Giant), was a giant and astronomer of Welsh tradition. His rock-hewn chair was supposed to mete out death, madness or poetic inspiration to whoever spent a night on it http://en.wikipedia.org/wiki/Cadair_Idris.
I finish the entry with this thought and a final note regarding "Barcap".
Barcap, has managed to to demonstrate an altruistic nature whilst recovering from illness (a time when it is easier to be selfish and introspective). His on-line financial website and PC software have generated charitable donations of nearly 15K for underpriviliged children via "Action for Children". His time has been given freely in all aspects of the project.
Friday 23 April 2010
Weeping Women
Chemotherapy is a cycle by its nature. A large proportion of the drugs go into your system intravenously and work their way through your system. There are the morning and evening Capecitabine tablets to take throughout the cycle (along with the other elements of the cocktail) but the bulk go in intraveniously at the beginnning of the cycle.
At the beginning of the cycle it hammers you and as you work your way through the cycle normality quickly returns in different degrees. As things progress the things that you felt on the inside manifest on hte outside e.g. hair loss doesn't start immediately but it is here with a vengeance now.:-)
With the extra week to my first cycle to recover from low white cell counts I was looking in good shape before starting the second cycle. The evening before going in for chemo I was out in the local streets and parks rollerblading with my daughter (Boogle bunny) and playing football in the garden with my son (The Huffty).
I knew what was coming the following day, but when you are looking from the outside it is a shock because you see someone in good physical shape one moment and then needing sleep, rest and suffering nausea the next.
I went to bed shortly after coming home from chemo on Wednesday and left kids who hadn't kissed their daddy goodnight and also found out the next day that I had also left a wife to weep downstairs.
My discovery was because I posed the direct question to Kitten yesterday of "Has it occured to you that I could die?"
Of course we have discussed all possibilities in the past but it is good to be so direct on the odd occasion to illicit an truthful respone and gauge the current feeling.
Kitten was honest in her appraisal and said that she had never really countenanced it before seeing me in chemotherapy on Wednesday when she felt that I had looked vulnerable for the first time. She had spent Wednesday night weeping and more the following morning when invited in from the playground for a chat at school.
Boogle bunny has also been suffering with the emotion of it recently and that is more difficult because she is of an age where she is old enough to understand the situation at some level, but still not fully conversant in expressing how she feels.
The whole point of this entry is to re-iterate what I have said before and that is that I am at the eye of the storm and it is easier for me to see what is going on with me and stay calm. It is not always so easy for those around and close to you and they need support.
I try and give support as much as I can and explain as much as I can about the process and how I feel, but at the first couple of days of the chemo cycle require you to be inwardly focused and selfish because you have to get through it. For me yesterday was difficult to get through because of he nausea, but I rested enough and was selfish enough to get through it without "wasting the drugs".
The women's tears may not have been welcomed by them but they were all part of the healing process, perhaps a few of them will have gently caressed my soul.
Following on from the post "Kitten Quips"......It's good to be loved.
I have added this line immediatly after finishing the blog because as soon as I published it (to the second) Radio 2 started playing an old song by Blue Oyster Cult called "Don't Fear the Reaper".
Clearly, I am back on the money today :-)
At the beginning of the cycle it hammers you and as you work your way through the cycle normality quickly returns in different degrees. As things progress the things that you felt on the inside manifest on hte outside e.g. hair loss doesn't start immediately but it is here with a vengeance now.:-)
With the extra week to my first cycle to recover from low white cell counts I was looking in good shape before starting the second cycle. The evening before going in for chemo I was out in the local streets and parks rollerblading with my daughter (Boogle bunny) and playing football in the garden with my son (The Huffty).
I knew what was coming the following day, but when you are looking from the outside it is a shock because you see someone in good physical shape one moment and then needing sleep, rest and suffering nausea the next.
I went to bed shortly after coming home from chemo on Wednesday and left kids who hadn't kissed their daddy goodnight and also found out the next day that I had also left a wife to weep downstairs.
My discovery was because I posed the direct question to Kitten yesterday of "Has it occured to you that I could die?"
Of course we have discussed all possibilities in the past but it is good to be so direct on the odd occasion to illicit an truthful respone and gauge the current feeling.
Kitten was honest in her appraisal and said that she had never really countenanced it before seeing me in chemotherapy on Wednesday when she felt that I had looked vulnerable for the first time. She had spent Wednesday night weeping and more the following morning when invited in from the playground for a chat at school.
Boogle bunny has also been suffering with the emotion of it recently and that is more difficult because she is of an age where she is old enough to understand the situation at some level, but still not fully conversant in expressing how she feels.
The whole point of this entry is to re-iterate what I have said before and that is that I am at the eye of the storm and it is easier for me to see what is going on with me and stay calm. It is not always so easy for those around and close to you and they need support.
I try and give support as much as I can and explain as much as I can about the process and how I feel, but at the first couple of days of the chemo cycle require you to be inwardly focused and selfish because you have to get through it. For me yesterday was difficult to get through because of he nausea, but I rested enough and was selfish enough to get through it without "wasting the drugs".
The women's tears may not have been welcomed by them but they were all part of the healing process, perhaps a few of them will have gently caressed my soul.
Following on from the post "Kitten Quips"......It's good to be loved.
I have added this line immediatly after finishing the blog because as soon as I published it (to the second) Radio 2 started playing an old song by Blue Oyster Cult called "Don't Fear the Reaper".
Clearly, I am back on the money today :-)
Thursday 22 April 2010
Kitten Quips
Yes that does say "Kitten Quips" and not "Kitten Quits".
On the way home from the Marsden yesterday I was chatting on the phone with my mother and was talking about my weekend close encounter with the squirrel.
I was saying that I just knew that he was going to jump on me and at the end of the day they are "horrible, diseased creatures"
Kitten quipped "just like you then".
It feels great to be loved.
On the way home from the Marsden yesterday I was chatting on the phone with my mother and was talking about my weekend close encounter with the squirrel.
I was saying that I just knew that he was going to jump on me and at the end of the day they are "horrible, diseased creatures"
Kitten quipped "just like you then".
It feels great to be loved.
Second Cycle of Chemo Underway
My second dose of intravenous chemotherapy went ahead yesterday as planned (There is a medical resume at the foot of the post for the Holby City and Casualty addicts and professionals).
Today, I will be learning lessons from he first cycle and taking things easy. I went to bed shortly after I arrived home yesterday because I felt very queasy and will be doing my best to avoid a repeat of the nausea that I suffered at the beginning of the first cycle. Last time I arrived home at 11:30pm, so going to bed more or less straight away was a given.
It all went well yesterday, but is a lengthy affair and I was at the hospital for two hours longer than the longest other person receiving chemotherapy in the Medical day unit.
It's a bit surreal that Kitten and I were dropping the kids off to school early yesterday before a nine hour session at the Marsden, but it is a clear indication that this is a family affair and not just my problem.
Kitten spent most of the day with me and Notoplip came up duing the lunchtime when Kitten had work to do. I even managed a half hour snooze this time too.
It is much easier receiving chemotherapy a second time because the mystique around it has been removed. I just chatted my way through the day, read a couple of newspapers and watched a film on the laptop with Kitten in the afternoon. We looked a right couple of charlies watching the film sharing a pair of headphones, but I think she liked it. Copious amounts of junk were consumed during this period
I've got a good handle on the drugs that I am being administered and here is a resume from the medics amongst you.
A Day in the Life of Chemo Chenisovich (A high-brow joke for a change)
8:45 am Arrived at the Medical Day Unit
10.15 am Got started with the saline and potassium / magnesium drip and a couple of tablets to "increase the flow of water" and a flush bag
11:30 am Anti-sickness and steriod injections
11:40 am start the bevacizumab (Avastin) - (Chemo but strictly speaking a targeted Drug)
12:55 pm Epirubicin drip from syringe (chemo)
1.15 Cisplatin drip (Chemo) and Mannitol drip (Diuretic)
5.10 Saline and potassium / magnesium drip and flush bag
6:15 Depart
Today, I will be learning lessons from he first cycle and taking things easy. I went to bed shortly after I arrived home yesterday because I felt very queasy and will be doing my best to avoid a repeat of the nausea that I suffered at the beginning of the first cycle. Last time I arrived home at 11:30pm, so going to bed more or less straight away was a given.
It all went well yesterday, but is a lengthy affair and I was at the hospital for two hours longer than the longest other person receiving chemotherapy in the Medical day unit.
It's a bit surreal that Kitten and I were dropping the kids off to school early yesterday before a nine hour session at the Marsden, but it is a clear indication that this is a family affair and not just my problem.
Kitten spent most of the day with me and Notoplip came up duing the lunchtime when Kitten had work to do. I even managed a half hour snooze this time too.
It is much easier receiving chemotherapy a second time because the mystique around it has been removed. I just chatted my way through the day, read a couple of newspapers and watched a film on the laptop with Kitten in the afternoon. We looked a right couple of charlies watching the film sharing a pair of headphones, but I think she liked it. Copious amounts of junk were consumed during this period
I've got a good handle on the drugs that I am being administered and here is a resume from the medics amongst you.
A Day in the Life of Chemo Chenisovich (A high-brow joke for a change)
8:45 am Arrived at the Medical Day Unit
10.15 am Got started with the saline and potassium / magnesium drip and a couple of tablets to "increase the flow of water" and a flush bag
11:30 am Anti-sickness and steriod injections
11:40 am start the bevacizumab (Avastin) - (Chemo but strictly speaking a targeted Drug)
12:55 pm Epirubicin drip from syringe (chemo)
1.15 Cisplatin drip (Chemo) and Mannitol drip (Diuretic)
5.10 Saline and potassium / magnesium drip and flush bag
6:15 Depart
Tuesday 20 April 2010
Chemo Brought Forward
I was due to have pre-chemotherapy tests tomorrow followed by chemotherapy on Thursday.
I went into work early this morning to avoid the rush hour and, before leaving the office for a customer meeting, I thought I would chase the Marsden as there was some doubt over the availability of a Thursday slot for me.
Sam the Eagle and I were on our way in a black cab going down the London Wall towards Bank when the phone went
"Can you come in for pre-chemo checks this morning as we have got a slot for you tomorrow".
I'm familiar with the saying "Never look a gift-horse in the mouth" and thought it applicable even if the gift is being drip-fed chemicals for nine hours.
So I made my apologies and diverted the cab to the nearest tube station.
The blood tests were all good so I am ready for some more rock and roll tomorrow. There are a few loose ends to clear up for work this afternoon though.
At least I am back on course with the treatment and that is the main objective.
I went into work early this morning to avoid the rush hour and, before leaving the office for a customer meeting, I thought I would chase the Marsden as there was some doubt over the availability of a Thursday slot for me.
Sam the Eagle and I were on our way in a black cab going down the London Wall towards Bank when the phone went
"Can you come in for pre-chemo checks this morning as we have got a slot for you tomorrow".
I'm familiar with the saying "Never look a gift-horse in the mouth" and thought it applicable even if the gift is being drip-fed chemicals for nine hours.
So I made my apologies and diverted the cab to the nearest tube station.
The blood tests were all good so I am ready for some more rock and roll tomorrow. There are a few loose ends to clear up for work this afternoon though.
At least I am back on course with the treatment and that is the main objective.
Sunday 18 April 2010
Close Encounters of the Squirrel Kind
Yesterday, I started the most gentle kind of exercise with a lunch time walk with my mother in Richmond Park. It was a chance to catch up as we have been bridging the gap between London and South Wales via Skype.
It was a beautiful day in London and I believe through most, if not all, of the country.
For those who know Richmond Park, we drove to the Pen Ponds cark park and walked between Pen Ponds up the hill towards Richmond Gate. The photos below show the view when walking back from Richmond towards Pen Ponds and, of course no visit to Richmond Park would be complete without some deer. I hasten to add for the photo buffs that these pictures were taken with a mobile phone!
It was a beautiful day in London and I believe through most, if not all, of the country.
For those who know Richmond Park, we drove to the Pen Ponds cark park and walked between Pen Ponds up the hill towards Richmond Gate. The photos below show the view when walking back from Richmond towards Pen Ponds and, of course no visit to Richmond Park would be complete without some deer. I hasten to add for the photo buffs that these pictures were taken with a mobile phone!
When we got back from the park I decided to do some Chi Kung in the garden, which I found very relaxing. Very relaxing until a squirrel decided to get in on the act.
The Chi Kung I am doing is very simple. It is called Zhan Zhuang and just involves standing still (like a tree). The whole time I was doing it there was a little hoverfly hovering right next to me. He was an expert hoverer, but had clearly benefited from a lot of practice (either that or he/she was a natural). I, on the other hand, looked like a man standing still in his garden. If the neighbours had been watching then perhaps they will be taking extra care to put the lock chains on their doors at night and their neighbourhood watch stickers in their windows.
Anyway, there I was standing in the garden, listening to the sounds of mother nature when a rather large squirrel hopped over the fence into the garden. He was about twenty feet in front of me, but as I was completely still I pretty much guessed what was going to happen next.
I knew that he was going to want to take a closer look at me and, sure enough, he scurried up the fence between my neighbour's garden and mine and ran along it until he was adjacent but slightly in front of me.
So, I had the hoverfly hovering on my left side and the large grey squirrel staring at me from my right (only about 5-6 feet away).
I'm a stubborn old git so I didn't want to finish what I was doing, but deep down I knew that if I didn't show some movement that the squirrel was going to jump off the fence and run straight up me.
Earlier that afternoon I had spoken to Sushi and Notoplip who were just coming off the beach in Bournemouth. When walking along the promenade a seagull had left a sizeable deposit on Sushi's head which Notoplip had busied himself cleansing with Wet Wipes. Sushi asked me whether it was meant to be lucky but I didn't give her any confirmation. Personally, I find it difficult to see where the luck is in having a bird come along and do a big shit on your head.
Having been left with Sushi's image I couldn't help but wonder what this squirrel might be capable of doing to me, so my imagination had a conversation with the squirrel that went something like this.
Mr Squirrel : "Hmmmm, don't think I've seen a tree like that before, no acorns. Any nuts?"
Me: "I'm a man standing still, Mr Squirrel not a ******* tree
Mr Squirrel: "I still want to run up you and shit on your head"
Me: "OK, I'm going to turn very slowly, so that you can see that I am alive"
Mr Squirrel: "Look at my face. Bothered?"
So I turned slowly towards Mr. Squirrel. He looked at me for a couple of seconds and then hopped and skipped into our neighbours garden.
He was rather a large squirrel, presumably with a lot of disease and not low immune system friendly. He still looked very fluffy and cuddly and part of me was pleased that he had been willing to get so close to me.
I couldn't help but feel that David Carradine would have dealt with it slightly differently in the Kung Fu box set. Perhaps along the lines of
"When you are at one with the squirrel, you will be at one with the trees and know how to store your energy for the darker days".
This was infinitely wiser than my take which was
"Don't get too close Mr squirrel, because I am worried that you might shit on my head or pass on one of your nasty diseases".
It seems that there is a gulf between a Shaolin priest's mindset and mine.
I will keep practising.
Saturday 17 April 2010
Medicine - The Best of Both Worlds
Although not having been able to have my second batch of chemotherapy on Thursday was a setback, by far the worst thing that has happened this week has revolved around my back.
I had problems with my back on the way back from North Wales on Sunday night, which had eased by the time I saw the doctor on Tuesday. I am seeing the head of the GP practice and I feel that she is an exceptionally good GP, probably the best I have come across. She considered the problem to be muscular and felt that it would continue to ease.
As the week went on my back did get better, or at least it did until I had my Laughing (Cow) fit on Thursday night. Whilst laughing one's head off is good for the soul I can tell you that it isn't necessarily good for one's back.
When I went to bed on Thursday night my back went back into spasm and after eventually getting back to sleep for two hours I awoke in excruciating pain. I spent the rest of the night either on my hands and knees or laying in the bath.
From my own experience and from the experience of a number of people I know the NHS is adept at solving back issues that require surgical treatment, indeed Kitten benefited from this only last year. However, other back issues whether on-going or spontaneous don't always seem to be met with a game plan other than anti-inflammatory tablets or gels (which I am not allowed to use anyway).
I first used osteopathy for treatment of a relatively minor back problem over 20 years ago, so I know that there are alternatives and osteopathy is now considered by many to be a mainstream practice. It probably stands apart from many other alternative practices (especially in the eyes of the British Medical Association) because it is legally regulated and requires a 4 or 5 year degree course to become a qualified practitioner. Less recognised is cranial osteopathy, which has become a popular treatment with mums for young babies. I have been treated successfully with cranial osteopathy for acute tinnitus, for which the NHS was not able to offer me any options.
Anyway, the point of that little ramble was that the gym that I visit at lunchtimes, when working in London has resident osteopaths and physiotherapists for the treatment of sports injuries. They work in conjunction with the gym trainers to provide remedial programmes in parallel with standard treatments.
I decided that I would go into the office as planned and see whether I could get an emergency appointment. The mistake that I consider most make when considering alternative treatments is that they consider them as a last resort when the conventional approach has already failed them, or they wait for ages for a GP to refer them. To my mind there are horses for courses; Cancer specialists are good for treating cancer and back specialists are good for treating back problems. The secret in any situation is to get the problem treated quickly before it "takes hold".
The gym is only a short hobble from the tube station and Kitten was gracious enough to get out of bed at 6:15am to give me a lift to start the journey nearby.
I haven't ever had any major problems with my back but have used treatment to deal with minor problems and sports injuries. Also, I haven't had any cause to have treatment for at least a couple of years and I found that my usual practitioner is off on maternity leave. Instead I had the pleasure of an early morning appointment with a mad but talented Canadian osteopathist.
Not only was he able to identify the source of the problem but was also able to give me advice on how to avoid the problem going forward. He was generous with his time and used a combination of standard osteopathy and cranial techniques. He practices elsewhere and doesn't usually use cranial osteopathy at the gym because it is sports focused and much more aligned with skeletal manipulation, but he checked to see whether I was open to it. His reason for doing so was that it allowed him to work longer without putting my body under too much stress. My attitude to anything (medical or otherwise) is results oriented i.e. if it works for me at that time then that is all I care about.
When I left and as the day progressed the problem continued to ease but I was still left with the residual pain from all the muscle spasms that I had suffered overnight. I rang the hospital and spoke to my case nurse to see what types of pain killers would be appropriate (I cannot use anything that is Ibuprofen based and paracetamol would probably be strong enough). My logic was that I would need something strong if the problem came back and I also needed a good night's sleep to get me back to normal.
A visit to the GP yielded some Co-Dydramol and these and another soak in the bath were enough to promote a good night's sleep and I have gone from pure agony on Thursday night to being perfectly OK today.
The key point about the back problem was that I haven't been doing any constructive exercise since the outdoor ice-skating finished at the beginning of March (other than the Chi Kung that I have just started) and this is unusual for me. Because I have been working from home I haven't even been getting the regular walks back and forth to the station. The weather at the beginning of my chemo wasn't conducive to me getting out either.
The combination of an "alternative" therapy and regular drugs have got me back in one piece very quickly and I will now make sure that I am doing the stretching and general exercise necessary to keep me in one piece. I don't need additional problems as I progress through my treatment.
I had problems with my back on the way back from North Wales on Sunday night, which had eased by the time I saw the doctor on Tuesday. I am seeing the head of the GP practice and I feel that she is an exceptionally good GP, probably the best I have come across. She considered the problem to be muscular and felt that it would continue to ease.
As the week went on my back did get better, or at least it did until I had my Laughing (Cow) fit on Thursday night. Whilst laughing one's head off is good for the soul I can tell you that it isn't necessarily good for one's back.
When I went to bed on Thursday night my back went back into spasm and after eventually getting back to sleep for two hours I awoke in excruciating pain. I spent the rest of the night either on my hands and knees or laying in the bath.
From my own experience and from the experience of a number of people I know the NHS is adept at solving back issues that require surgical treatment, indeed Kitten benefited from this only last year. However, other back issues whether on-going or spontaneous don't always seem to be met with a game plan other than anti-inflammatory tablets or gels (which I am not allowed to use anyway).
I first used osteopathy for treatment of a relatively minor back problem over 20 years ago, so I know that there are alternatives and osteopathy is now considered by many to be a mainstream practice. It probably stands apart from many other alternative practices (especially in the eyes of the British Medical Association) because it is legally regulated and requires a 4 or 5 year degree course to become a qualified practitioner. Less recognised is cranial osteopathy, which has become a popular treatment with mums for young babies. I have been treated successfully with cranial osteopathy for acute tinnitus, for which the NHS was not able to offer me any options.
Anyway, the point of that little ramble was that the gym that I visit at lunchtimes, when working in London has resident osteopaths and physiotherapists for the treatment of sports injuries. They work in conjunction with the gym trainers to provide remedial programmes in parallel with standard treatments.
I decided that I would go into the office as planned and see whether I could get an emergency appointment. The mistake that I consider most make when considering alternative treatments is that they consider them as a last resort when the conventional approach has already failed them, or they wait for ages for a GP to refer them. To my mind there are horses for courses; Cancer specialists are good for treating cancer and back specialists are good for treating back problems. The secret in any situation is to get the problem treated quickly before it "takes hold".
The gym is only a short hobble from the tube station and Kitten was gracious enough to get out of bed at 6:15am to give me a lift to start the journey nearby.
I haven't ever had any major problems with my back but have used treatment to deal with minor problems and sports injuries. Also, I haven't had any cause to have treatment for at least a couple of years and I found that my usual practitioner is off on maternity leave. Instead I had the pleasure of an early morning appointment with a mad but talented Canadian osteopathist.
Not only was he able to identify the source of the problem but was also able to give me advice on how to avoid the problem going forward. He was generous with his time and used a combination of standard osteopathy and cranial techniques. He practices elsewhere and doesn't usually use cranial osteopathy at the gym because it is sports focused and much more aligned with skeletal manipulation, but he checked to see whether I was open to it. His reason for doing so was that it allowed him to work longer without putting my body under too much stress. My attitude to anything (medical or otherwise) is results oriented i.e. if it works for me at that time then that is all I care about.
When I left and as the day progressed the problem continued to ease but I was still left with the residual pain from all the muscle spasms that I had suffered overnight. I rang the hospital and spoke to my case nurse to see what types of pain killers would be appropriate (I cannot use anything that is Ibuprofen based and paracetamol would probably be strong enough). My logic was that I would need something strong if the problem came back and I also needed a good night's sleep to get me back to normal.
A visit to the GP yielded some Co-Dydramol and these and another soak in the bath were enough to promote a good night's sleep and I have gone from pure agony on Thursday night to being perfectly OK today.
The key point about the back problem was that I haven't been doing any constructive exercise since the outdoor ice-skating finished at the beginning of March (other than the Chi Kung that I have just started) and this is unusual for me. Because I have been working from home I haven't even been getting the regular walks back and forth to the station. The weather at the beginning of my chemo wasn't conducive to me getting out either.
The combination of an "alternative" therapy and regular drugs have got me back in one piece very quickly and I will now make sure that I am doing the stretching and general exercise necessary to keep me in one piece. I don't need additional problems as I progress through my treatment.
Hair Falling out
This week has been a difficult week for a number of reasons and I shall do a separate post to resume.
However, I thought it worth doing a separate post on the onset of hair loss as I know it is something that people immediately associate with chemotherapy.
Before I started chemotherapy my friend (who I shall call Napoli man) sheared my locks and took me from a normal haircut down to a grade 2 or 3. It wasn't too severe but meant that if my hair started falling out immediately then I wouldn't be waking up with big clumps of hair on my pillow. If you've been following the blog then you will see that this approach fits with the overall way that I am attempting to manage myself through the whole experience.
Anyway I popped in to see Napoli man a few days ago and he said "Right time to take it really short because you are due to start the second cycle of chemotherapy and your hair is unlikely to last". Now whilst Napoli man is a top qualified Toni & Guy stylist he is not a top qualified oncologist, so you might question his authority on the subject. However, he has the unfortunate experience of watching his daughter go through chemotherapy as a baby. I am pleased to say that is a tale that, whilst apparently miserable, has had a very a happy ending. She is now a bouncing and mischievous 5 year old in good health.
So off the hair came down to grade 1 on Tuesday lunchtime.
I must admit I noticed short stubbly hairs on my laptop on Thursday but didn't connect. All us men need a good wife though to announce that our hair is falling out. The hair on top of my head is going patchy and I don't think it will be long before it goes.
It's never been a big issue for me. I was asked whether I wanted a "cooling cap" to try and preserve my hair when I received my first dose of chemo. I have heard that cooling caps are not particularly pleasant and when I queried why a bloke would be that bothered I was surprised by the nurse's answer.
My attitude for my personal circumstance has always been that whilst I don't want to lose my hair, it isn't a major concern in the wider scheme of things. It may be simplistic but this is how I look at it
What surprised me about the nurse's response was that it is often young men who struggle the most. I must admit that whilst I know that you can get cancer at any age I hadn't considered a lot of cancer sufferers to be young, but she pointed out that there are a number of young men who have testicular cancer.
So all previous jokes about hair loss aside and now it is happening. Am I bothered? My attitude is the same as I anticipated; it is not something I welcome but it's not a big issue for me (D.A. Decorator I'm going to look like you soon, but without the chin).
However, I thought it worth doing a separate post on the onset of hair loss as I know it is something that people immediately associate with chemotherapy.
Before I started chemotherapy my friend (who I shall call Napoli man) sheared my locks and took me from a normal haircut down to a grade 2 or 3. It wasn't too severe but meant that if my hair started falling out immediately then I wouldn't be waking up with big clumps of hair on my pillow. If you've been following the blog then you will see that this approach fits with the overall way that I am attempting to manage myself through the whole experience.
Anyway I popped in to see Napoli man a few days ago and he said "Right time to take it really short because you are due to start the second cycle of chemotherapy and your hair is unlikely to last". Now whilst Napoli man is a top qualified Toni & Guy stylist he is not a top qualified oncologist, so you might question his authority on the subject. However, he has the unfortunate experience of watching his daughter go through chemotherapy as a baby. I am pleased to say that is a tale that, whilst apparently miserable, has had a very a happy ending. She is now a bouncing and mischievous 5 year old in good health.
So off the hair came down to grade 1 on Tuesday lunchtime.
I must admit I noticed short stubbly hairs on my laptop on Thursday but didn't connect. All us men need a good wife though to announce that our hair is falling out. The hair on top of my head is going patchy and I don't think it will be long before it goes.
It's never been a big issue for me. I was asked whether I wanted a "cooling cap" to try and preserve my hair when I received my first dose of chemo. I have heard that cooling caps are not particularly pleasant and when I queried why a bloke would be that bothered I was surprised by the nurse's answer.
My attitude for my personal circumstance has always been that whilst I don't want to lose my hair, it isn't a major concern in the wider scheme of things. It may be simplistic but this is how I look at it
- Getting a secondary cancer - That would be bad as death would be the likely outcome
- Having a large part of my oesophagus and stomach removed - bad but inevitable, short of a miracle
- Losing my hair - not my greatest concern
What surprised me about the nurse's response was that it is often young men who struggle the most. I must admit that whilst I know that you can get cancer at any age I hadn't considered a lot of cancer sufferers to be young, but she pointed out that there are a number of young men who have testicular cancer.
So all previous jokes about hair loss aside and now it is happening. Am I bothered? My attitude is the same as I anticipated; it is not something I welcome but it's not a big issue for me (D.A. Decorator I'm going to look like you soon, but without the chin).
Thursday 15 April 2010
A Barrel of Laughs - I Nearly Passed Out
I just came the closest that I ever have been to passing out through laughter.
My neck is still hurting, my back is still hurting but I have eventually managed to regain my composure.
Unfortunately the story is so crude that I can't share it, even though I consider myself to be very open and adept at tearing up boundaries.
Suffice to say that I will never be able to view Laughing Cow cheese in the same light again.
Laughter is one of the best healers there is.
My neck is still hurting, my back is still hurting but I have eventually managed to regain my composure.
Unfortunately the story is so crude that I can't share it, even though I consider myself to be very open and adept at tearing up boundaries.
Suffice to say that I will never be able to view Laughing Cow cheese in the same light again.
Laughter is one of the best healers there is.
Subcutaneous Curbs the Spontaneous
When Kitten and I visited the Marsden yesterday for the pre-chemotherapy meeting we went to the Medical Day Unit.
It was far from the relative quiet of the Ward on which I had my first batch of chemo being more closely aligned with a busy morning at Clapham Junction.
Whilst standing at Reception I peered into the room where people were receiving their drip-fed healing. It reminded me of the scene in the film The Matrix where the hero Keanu wakes up to the reality of living in a pod plugged into a machine being used a human battery. In other words it looked like a load of battery hens lined up.
I was in that room today, not for chemo (that will be next week) but for the subcutaneous (under the skin) blood boosting injections.
In fairness the room felt far less cluttered when inside, the view from reception was somewhat misleading and I must say that the chairs were very comfy.
There was some confusion from the nurses as to what I was doing there, so one of them asked me. There was a ripple of laughter when I floated idea that I had just been loitering outside and thought that the chairs looked comfy, so I thought I would come in and enjoy the view.
The injection was quite a little stinger and I must self-administer it for the next two days. So, now I really am in "Junky City" and will be "jacking up" on a regular basis at 4pm, so any hint of mid-afternoon spontenaity goes west. However, getting the immune system back up to scratch is the main priority so that I can resume my treatment.
The delay for the next round of chemo has its advantages; it means that I won't be operated on until after the World Cup final in mid-July. Perhaps I should get the Budweiser mini-fridge after all. If I get one tomorrow then could use it to store my pre-loaded injection needles.
In the meantime both Kitten and I are missing the kids, but it sounds like they are having a great time. There are advantages too, as we have just come back from a meal out together whilst Kitten also had the pleasure of awakening very gradually from her slumber this morning.
It was far from the relative quiet of the Ward on which I had my first batch of chemo being more closely aligned with a busy morning at Clapham Junction.
Whilst standing at Reception I peered into the room where people were receiving their drip-fed healing. It reminded me of the scene in the film The Matrix where the hero Keanu wakes up to the reality of living in a pod plugged into a machine being used a human battery. In other words it looked like a load of battery hens lined up.
I was in that room today, not for chemo (that will be next week) but for the subcutaneous (under the skin) blood boosting injections.
In fairness the room felt far less cluttered when inside, the view from reception was somewhat misleading and I must say that the chairs were very comfy.
There was some confusion from the nurses as to what I was doing there, so one of them asked me. There was a ripple of laughter when I floated idea that I had just been loitering outside and thought that the chairs looked comfy, so I thought I would come in and enjoy the view.
The injection was quite a little stinger and I must self-administer it for the next two days. So, now I really am in "Junky City" and will be "jacking up" on a regular basis at 4pm, so any hint of mid-afternoon spontenaity goes west. However, getting the immune system back up to scratch is the main priority so that I can resume my treatment.
The delay for the next round of chemo has its advantages; it means that I won't be operated on until after the World Cup final in mid-July. Perhaps I should get the Budweiser mini-fridge after all. If I get one tomorrow then could use it to store my pre-loaded injection needles.
In the meantime both Kitten and I are missing the kids, but it sounds like they are having a great time. There are advantages too, as we have just come back from a meal out together whilst Kitten also had the pleasure of awakening very gradually from her slumber this morning.
Wednesday 14 April 2010
Blood Boosting Injections
I was told today that although my blood counts were low, I would not receive blood boosting injections. This is not deemed to be part of the protocol. Presumably the protocols suggests that you have them if they discover the situation at the 10 day check.
However, what is refreshing is that my case was brought up with the Head of Oncology later in the day and he has decided that they are appropriate for me.
The blood boosting injections have their own side effects and complications but I feel more comfortable with this approach to just sitting and hoping that the cells will raise themselves to appropriate levels in time for next week.
So, I am off to the Marsden tomorrow where they will administer the first injection and then I will have to do it myself on the following two days. This will be necessary in each successive cycle.
The moral of the story........if you are taking a cocktail of drugs then it is never enough; just add some more
:-)
However, what is refreshing is that my case was brought up with the Head of Oncology later in the day and he has decided that they are appropriate for me.
The blood boosting injections have their own side effects and complications but I feel more comfortable with this approach to just sitting and hoping that the cells will raise themselves to appropriate levels in time for next week.
So, I am off to the Marsden tomorrow where they will administer the first injection and then I will have to do it myself on the following two days. This will be necessary in each successive cycle.
The moral of the story........if you are taking a cocktail of drugs then it is never enough; just add some more
:-)
First Setback
My pre-chemotherapy meeting involved first having an ECG and blood tests.
The results from the blood tests were not good in that my white blood cell and neutrophil counts are both low. Both are crucial to fighting infection and, if particularly degenerated can result in the body infecting itself.
There have been instances on the the clinical trial that I am participating in where these counts are low and the idea is to provide blood boosting injections where appropriate. That is one of the reasons for the 10 day check up but after 10 days my counts were still were still considered to be normal. They had halved from pre-chemotherapy levels but have since halved again.
The upshot of all this is that my next session of chemotherapy will be delayed by a week. I will go back next Wednesday for blood tests to ensure that these counts are back to acceptable levels. In the meantime I must not take the remaining Capecitabine chemotherapy tablets tonight or tomorrow. When I resume treatment the dose of Epirubicin will be reduced by 25%.
I have been told that there is no need to change behaviour e.g. working habits but should be cautious about possible infection.
My own feeling is that the last few days have been relatively hectic and that perhaps I should ease up a bit anyway. After all, this not a six furlong sprint but more of a Grand National.
Am I disappointed? A little, as it would be good to sail straight through, but I have not expected that and am only concerned with the end result.
The results from the blood tests were not good in that my white blood cell and neutrophil counts are both low. Both are crucial to fighting infection and, if particularly degenerated can result in the body infecting itself.
There have been instances on the the clinical trial that I am participating in where these counts are low and the idea is to provide blood boosting injections where appropriate. That is one of the reasons for the 10 day check up but after 10 days my counts were still were still considered to be normal. They had halved from pre-chemotherapy levels but have since halved again.
The upshot of all this is that my next session of chemotherapy will be delayed by a week. I will go back next Wednesday for blood tests to ensure that these counts are back to acceptable levels. In the meantime I must not take the remaining Capecitabine chemotherapy tablets tonight or tomorrow. When I resume treatment the dose of Epirubicin will be reduced by 25%.
I have been told that there is no need to change behaviour e.g. working habits but should be cautious about possible infection.
My own feeling is that the last few days have been relatively hectic and that perhaps I should ease up a bit anyway. After all, this not a six furlong sprint but more of a Grand National.
Am I disappointed? A little, as it would be good to sail straight through, but I have not expected that and am only concerned with the end result.
Tuesday 13 April 2010
Hair today.....
It's off! But this time it is so short that I really do look like a thug.
You can see the scar that goes all the way around one side of my head from an op.
You can see the scar from when a brick landed on my head when I was six (six stitches too and I was wearing a number 6 football shirt!).
You can also see the scar from when Notoplip pushed me across the room when we were p1ssed and I fell over a chair. When I woke up in the morning I was confronted by Kitten who wanted to know
"Why did you not come in until half past four"
"And before you answer that question, why is your pillow covered in blood".
Scars = memories. I feel like I could jump into the scene in Jaws where they all get drunk on the boat and compare their wounds. Mind you after this summer I should be able to compete with the best of them, as well as looking like a member of the Anthill mob
You can see the scar that goes all the way around one side of my head from an op.
You can see the scar from when a brick landed on my head when I was six (six stitches too and I was wearing a number 6 football shirt!).
You can also see the scar from when Notoplip pushed me across the room when we were p1ssed and I fell over a chair. When I woke up in the morning I was confronted by Kitten who wanted to know
"Why did you not come in until half past four"
"And before you answer that question, why is your pillow covered in blood".
Scars = memories. I feel like I could jump into the scene in Jaws where they all get drunk on the boat and compare their wounds. Mind you after this summer I should be able to compete with the best of them, as well as looking like a member of the Anthill mob
Monday 12 April 2010
Gearing up for 2nd Cycle Chemo
Most of Saturday was written off as I was awake at 5am having driven non-stop and arrived in North Wales just before midnight.
The source of the premature end to my sleep - an alarm on a talking pedometer!
Normally these interruptions can be shaken off, but you need everything to be just so, otherwise it is rest time. So, whilst it was just an afternoon walk on Saturday we managed to get out an about on Sunday.
The view from the restaurant whilst eating our Sunday lunch was clearly superior to anything to be found in South London
The source of the premature end to my sleep - an alarm on a talking pedometer!
Normally these interruptions can be shaken off, but you need everything to be just so, otherwise it is rest time. So, whilst it was just an afternoon walk on Saturday we managed to get out an about on Sunday.
The view from the restaurant whilst eating our Sunday lunch was clearly superior to anything to be found in South London
So the kids get to stay at the seaside for the week and we get some "peace and quiet", oh and the next cycle of chemotherapy.
To be honest it isn't a particularly daunting feeling, more uncomfortable. It's a bit like having a good feed at lunchtime. You feel satiated. Sitting there patting your belly, the thought of getting up from the table and going back to work is uncomfortable. You know that you have to get on with it.
First up is an appointment with my GP tomorrow. As I haven't had an major problems it is an appointment to catch up, but she is an excellent doctor so I will do my best to pick her brains as well as I can. It will be good to form my thoughts fully before the pre-chemo meeting on Wednesday.
A pre-chemo meeting takes place at the Royal Marsden on Wednesday and I assume (but don't know) that this will be to discuss how the first phase has gone. Because I am on a clinical trial there is a "Quality of Life" questionnaire to fill in but beyond that I don't know. I guess I am quite relaxed about it all.
Of more interest to me is why I have a bad back after driving from North Wales last night. Sam the Eagle and Super Frank were laughing in the kitchen in the office today because I was moaning about my back. Sam the Eagle said that I've been in the office with cancer for a few months and haven't moaned at all. I have a bad back for a day and I'm moaning.
I'm sure that my GP will be able to offer some help if it hasn't righted itself by then. Oddly, it started as I sat in the car and drove away from my kids.........Go figure.
I'm sure that my GP will be able to offer some help if it hasn't righted itself by then. Oddly, it started as I sat in the car and drove away from my kids.........Go figure.
Saturday 10 April 2010
Soul of the Sunshine
Kitten, the kids, "Grannyma" and I took Grannyma's dog for a walk in the woods this afternoon.
The sun was shining, the birds were singing and the mood one of jollyness.
Detaching from London, even if only for a short time, brings back a sense of reality and the beauty of simple pleasures.
As I strolled hand in hand with Kitten and took time out to have fun with the children the happiness also reminds you of what you stand to lose if things don't go your way.
My little boat is sailing with a fair wind, the sky is blue and the sun is shining but it is still sailing on a "sea of sorrow".
The disintegration of the past is where new beginnings come from. Now and again it is good to dive into that sea, climb back on board, relax and dry off in the sun. The occasional melancholic moment keeps things real and reinforces the desire to keep sailing in the right direction.
This post originally finished above, but as I began to sign off I checked my email and it is clear that Italian man has been immersing himself in the world of David Carradine's "Kung Fung" whilst on holiday. He made this observation, which seemed empathetic and sychronous with my post
The sun was shining, the birds were singing and the mood one of jollyness.
Detaching from London, even if only for a short time, brings back a sense of reality and the beauty of simple pleasures.
As I strolled hand in hand with Kitten and took time out to have fun with the children the happiness also reminds you of what you stand to lose if things don't go your way.
My little boat is sailing with a fair wind, the sky is blue and the sun is shining but it is still sailing on a "sea of sorrow".
The disintegration of the past is where new beginnings come from. Now and again it is good to dive into that sea, climb back on board, relax and dry off in the sun. The occasional melancholic moment keeps things real and reinforces the desire to keep sailing in the right direction.
This post originally finished above, but as I began to sign off I checked my email and it is clear that Italian man has been immersing himself in the world of David Carradine's "Kung Fung" whilst on holiday. He made this observation, which seemed empathetic and sychronous with my post
My favourite line from Kung Fu is in an episode where Caine has some dealings with a priest or something of the sort. They get to talking about religion and faith and when the priest learns that Caine is also a priest he asks him "What do you worship?". Caine seems to remain momentarily stuck for the right words for an answer, almost as if the question confuses him, then he simply replies "Life".
Friday 9 April 2010
A Weekend Away
I took the afternoon off to go and see the end of my son's week at soccer school, which seems to have gone very well.
At the last soccer school The Huffty won a trophy for "most improved player", this time was Notoplip's son's turn in the limelight. He was the penalty king and came away with an impressive trophy. Well done "Sonic".
When we got back I went straight to sleep....Mmmmmmmmmmmm power nap, I could get used to this life.
This weekend we are off to visit Kitten's parents. They live in a their seaside town in North Wales so, as well as being a chance to catch up, it will be a chance to fill the lungs with some sea air. If the weather keeps fine we may also manage a walk in the countryside.
Naturally, "Mr Tumour" will be making the journey with us. He goes everywhere with me at the moment but is a grumpy old sh1t. I told Notoplip to ask him how he was whilst at the football this afternoon.
Notoplip bent down and enquired "How are you Mr Tumour"?
"F*** Off" was the gruff reply that eminated from my chest.
Ah well, I guess that not everyone has a "Sense of tumour".
At the last soccer school The Huffty won a trophy for "most improved player", this time was Notoplip's son's turn in the limelight. He was the penalty king and came away with an impressive trophy. Well done "Sonic".
When we got back I went straight to sleep....Mmmmmmmmmmmm power nap, I could get used to this life.
This weekend we are off to visit Kitten's parents. They live in a their seaside town in North Wales so, as well as being a chance to catch up, it will be a chance to fill the lungs with some sea air. If the weather keeps fine we may also manage a walk in the countryside.
Naturally, "Mr Tumour" will be making the journey with us. He goes everywhere with me at the moment but is a grumpy old sh1t. I told Notoplip to ask him how he was whilst at the football this afternoon.
Notoplip bent down and enquired "How are you Mr Tumour"?
"F*** Off" was the gruff reply that eminated from my chest.
Ah well, I guess that not everyone has a "Sense of tumour".
Riding my Chemo Cycle
I am still pedalling away on my "chemo cycle" and thinking of adding a fruit and veg basket on the front to make a few extra bob on the way.
Yesterday was a very good day for me in a psychological sense.
I went into work to attend a project kick-start meeting in the City.
The sun came out in my honour which was great given the recent state of the weather. Brilliant sunshine lifts everyone's mood and the City seemed a happy bustling place.
It was just good to get out of the four walls for the day and the fact that the meeting was with somone who I had a close working relationship with in the past (The Milky Bar Kid) made the affair a very relaxed one.
I did the commute on an early train to avoid the risk of coughs and colds and Sam the Eagle and I took the precaution of taking a cab to avoid the rush hour tube from our offices into the City's heart.
The cab journey set the tone, as the cabbie was in fine form. I have to be careful what I say here, or I will have Notoplip on my case, but a lot of London cabbies are nice enough but "drier lunches" than their image portrays.
Suffice to say that we enjoyed a good ten minutes of banter and the mood carried on into the meeting, which was both productive and performed out in a jovial spirit. When discussing a recent leftfield claim that had been made for damage caused to a car by a baboon I took great pleasure in enquiring as to whether the problem had been fixed with a "mandrill" :-).
In contrast to the tiredness I felt with a couple of hours shopping on Monday, yesterday felt easy. I made it into the office early and left at 2pm when we got back from what was a lengthy meeting. I took a stroll with my laptop slung over my shoulder but the day was a breeze. A nod here to "End of Time" who I met on the way.
Today is chemo day 16 and next Wednesday will be the last day (21), so it is time to live as normally as possible before the bell rings for round two. Having so far negotiated round I successfully I don't know what the culmulative effect of another intravenous session will bring but right now I am in a good place.
Kitten and Sushi are scouring t'internet for somewhere for us to take a short break, with SandD possibly joining us for the weekend. The break will be in the window between chemo and operation and I will make a courtesy call to the Marsden today to see if it's ok. We are being sensible and not going too far. We will stay in the country but a short hop to the Isle of Wight is a possibility.
Yesterday was a very good day for me in a psychological sense.
I went into work to attend a project kick-start meeting in the City.
The sun came out in my honour which was great given the recent state of the weather. Brilliant sunshine lifts everyone's mood and the City seemed a happy bustling place.
It was just good to get out of the four walls for the day and the fact that the meeting was with somone who I had a close working relationship with in the past (The Milky Bar Kid) made the affair a very relaxed one.
I did the commute on an early train to avoid the risk of coughs and colds and Sam the Eagle and I took the precaution of taking a cab to avoid the rush hour tube from our offices into the City's heart.
The cab journey set the tone, as the cabbie was in fine form. I have to be careful what I say here, or I will have Notoplip on my case, but a lot of London cabbies are nice enough but "drier lunches" than their image portrays.
Suffice to say that we enjoyed a good ten minutes of banter and the mood carried on into the meeting, which was both productive and performed out in a jovial spirit. When discussing a recent leftfield claim that had been made for damage caused to a car by a baboon I took great pleasure in enquiring as to whether the problem had been fixed with a "mandrill" :-).
In contrast to the tiredness I felt with a couple of hours shopping on Monday, yesterday felt easy. I made it into the office early and left at 2pm when we got back from what was a lengthy meeting. I took a stroll with my laptop slung over my shoulder but the day was a breeze. A nod here to "End of Time" who I met on the way.
Today is chemo day 16 and next Wednesday will be the last day (21), so it is time to live as normally as possible before the bell rings for round two. Having so far negotiated round I successfully I don't know what the culmulative effect of another intravenous session will bring but right now I am in a good place.
Kitten and Sushi are scouring t'internet for somewhere for us to take a short break, with SandD possibly joining us for the weekend. The break will be in the window between chemo and operation and I will make a courtesy call to the Marsden today to see if it's ok. We are being sensible and not going too far. We will stay in the country but a short hop to the Isle of Wight is a possibility.
Tuesday 6 April 2010
Enter the Dragon
As I was winding up my work for the day, I was reminded that my body is harbouring a very large cancerous tumour. I shall refer to the tumour as "The dragon".
There have been a few rumblings of pain over the last few days but these have been from deeper in my stomach and more associated with eating. The pain I experienced this evening was similar to the pain I had before the chemotherapy started, but this time it was all-consuming. It seems that The dragon stirred in the cave, as if bothered by a small noise, before I assuaged him with the sacrifice of two paracetamol in his honour and the hypnotic journey of a short nap.
I got the feeling that I may only have experienced a docile flick of his tail and it would be a good idea to keep him sleeping until he battles with the English Master surgeon.
Continuing on the dragon theme, I had a text exchange with a good friend and colleague of mine regarding the 1970s David Carradine series "Kung Fu".
Italian man (who is English reared and of English and East German extract but married to an Italian and now full fledged in Italian culture and language - I said that in one breath, did you manage to follow it?) is on holiday in Switzerland, skiing and ice-skating. My friendship with Italian man dates back to the beginning of senior school and he is also director of the company we work for.
Over the years we have never "lived in each others pockets" but there has always been a "connection". We find it easy to communicate thoughts and ideas with each other and, whilst we don't by any means agree with each other on all issues, we always seem able to reach compromise through reasoned debate. In other words the personalities don't seem to get in the way. He is quick to think and slow to talk and I am quick to talk and slow to think, but we are generally on the same wavelength.
At the age of around 16 we took up martial arts together and were inspired more by the philosphy of the Kung Fu series rather than any naked ambition to rip lumps out of people. Those days are sadly gone and now I can just about lift my legs far enough to do the Hokey Cokey, but we do manage to go ice-skating together with our respective families. Kitten even tried once, but clung onto the sides like she was desperately clinging onto a lampost in a hurricane.
Anyway, he texted from Switzerland to say that having just skated on a rink the size of a football pitch he was back at the hotel and, with no TV available, he was catching up on my Kung Fu dvd box set.
"When you can take the pebble from my hand, it will be time to leave" he quipped. To which, I replied.
"I took the pebble many years ago, but it has been tossed into a lake and I must recover it".
The analogy has some recent significance as I have resurrected an old activity of mine Chi Kung. I practised the very basics of Chi Kung about 12 years ago and found it to be very useful in combatting a short phase where I experienced difficulty in getting to sleep. As a more progressive thing I found it useful as part of meditation; putting the body at one with the mind. I guess like a Chinese equivalent of traditional types of yoga (rather than Western yoga for fitness).
Before I continue on this thread the scientists amongst you may be interested that Chi Kung has been found to be helpful in the treatment of cancer in a clinical trial by the American Society of Clinical Oncology. Here's the link http://www.asco.org/ASCOv2/Meetings/Abstracts?&vmview=abst_detail_view&confID=65&abstractID=30347. The conclusion of the trial was that : This study suggests that MQ (medical Qigong) with usual health care can improve overall QOL, fatigue, positive mood status and reduce the side effects of nausea, sleep disturbance and inflammation of cancer patients. This study supports the use of MQ as an intervention for cancer care.
Now I hasten to add that pisses me off slightly because I lose the power to antagonise, but it is interesting that the West is now giving serious thought to ways from different cultures rather than the age old tradition of "it isn't ours so its nonsense".
Chi Kung (or Qigong) is practised by over 200 million Chinese and is engrained in their history and culture.
The way that I see what I have done in the past with Chi Kung could be summed up by an explanation I once read of getting to grips with the simplest posture. The analogy that was used was that in the freneticism of Western life our energy becomes fragmented and if we visualised our body as a sea of energy then it would most likely be a stormy sea. The idea of practising the basics of Chi Kung is to bring that sea under control so that the body's energy is more akin to mill pond. It's probably a shame that I didn't continu with this kind of practice but there is an awful lot of Jack Daniels to drink and parties to be had in the world.
I have considered practising Chi Kung from the beginning of this journey but I wasn't comfortable in my own mind because I viewed the "calming of seas" as being like a spreading of the energy. A bit like icing a cake with a knife, slowly smoothing. I considered that I only wanted to do that when the chemotherapy had started, as I wanted to spread the chemotherapy rather than the tumour.
This sort of philosophy is personal and not everyone's cup of tea but I feel comfortable with it in my little world.
There have been a few rumblings of pain over the last few days but these have been from deeper in my stomach and more associated with eating. The pain I experienced this evening was similar to the pain I had before the chemotherapy started, but this time it was all-consuming. It seems that The dragon stirred in the cave, as if bothered by a small noise, before I assuaged him with the sacrifice of two paracetamol in his honour and the hypnotic journey of a short nap.
I got the feeling that I may only have experienced a docile flick of his tail and it would be a good idea to keep him sleeping until he battles with the English Master surgeon.
Continuing on the dragon theme, I had a text exchange with a good friend and colleague of mine regarding the 1970s David Carradine series "Kung Fu".
Italian man (who is English reared and of English and East German extract but married to an Italian and now full fledged in Italian culture and language - I said that in one breath, did you manage to follow it?) is on holiday in Switzerland, skiing and ice-skating. My friendship with Italian man dates back to the beginning of senior school and he is also director of the company we work for.
Over the years we have never "lived in each others pockets" but there has always been a "connection". We find it easy to communicate thoughts and ideas with each other and, whilst we don't by any means agree with each other on all issues, we always seem able to reach compromise through reasoned debate. In other words the personalities don't seem to get in the way. He is quick to think and slow to talk and I am quick to talk and slow to think, but we are generally on the same wavelength.
At the age of around 16 we took up martial arts together and were inspired more by the philosphy of the Kung Fu series rather than any naked ambition to rip lumps out of people. Those days are sadly gone and now I can just about lift my legs far enough to do the Hokey Cokey, but we do manage to go ice-skating together with our respective families. Kitten even tried once, but clung onto the sides like she was desperately clinging onto a lampost in a hurricane.
Anyway, he texted from Switzerland to say that having just skated on a rink the size of a football pitch he was back at the hotel and, with no TV available, he was catching up on my Kung Fu dvd box set.
"When you can take the pebble from my hand, it will be time to leave" he quipped. To which, I replied.
"I took the pebble many years ago, but it has been tossed into a lake and I must recover it".
The analogy has some recent significance as I have resurrected an old activity of mine Chi Kung. I practised the very basics of Chi Kung about 12 years ago and found it to be very useful in combatting a short phase where I experienced difficulty in getting to sleep. As a more progressive thing I found it useful as part of meditation; putting the body at one with the mind. I guess like a Chinese equivalent of traditional types of yoga (rather than Western yoga for fitness).
Before I continue on this thread the scientists amongst you may be interested that Chi Kung has been found to be helpful in the treatment of cancer in a clinical trial by the American Society of Clinical Oncology. Here's the link http://www.asco.org/ASCOv2/Meetings/Abstracts?&vmview=abst_detail_view&confID=65&abstractID=30347. The conclusion of the trial was that : This study suggests that MQ (medical Qigong) with usual health care can improve overall QOL, fatigue, positive mood status and reduce the side effects of nausea, sleep disturbance and inflammation of cancer patients. This study supports the use of MQ as an intervention for cancer care.
Now I hasten to add that pisses me off slightly because I lose the power to antagonise, but it is interesting that the West is now giving serious thought to ways from different cultures rather than the age old tradition of "it isn't ours so its nonsense".
Chi Kung (or Qigong) is practised by over 200 million Chinese and is engrained in their history and culture.
The way that I see what I have done in the past with Chi Kung could be summed up by an explanation I once read of getting to grips with the simplest posture. The analogy that was used was that in the freneticism of Western life our energy becomes fragmented and if we visualised our body as a sea of energy then it would most likely be a stormy sea. The idea of practising the basics of Chi Kung is to bring that sea under control so that the body's energy is more akin to mill pond. It's probably a shame that I didn't continu with this kind of practice but there is an awful lot of Jack Daniels to drink and parties to be had in the world.
I have considered practising Chi Kung from the beginning of this journey but I wasn't comfortable in my own mind because I viewed the "calming of seas" as being like a spreading of the energy. A bit like icing a cake with a knife, slowly smoothing. I considered that I only wanted to do that when the chemotherapy had started, as I wanted to spread the chemotherapy rather than the tumour.
This sort of philosophy is personal and not everyone's cup of tea but I feel comfortable with it in my little world.
Monday 5 April 2010
Going to the Next Level
Kitten, the kids and I all went for a walk yesterday and the effects of the chemo are noticeable. We have also been shopping today and a couple of hours was all that it took to wipe me out; though I imagine that most fellas would claim to be in my camp on that one.
Let's just say that I am glad that I am not a self-employed manual worker. If you had to work through this in a manual job then I don't think it would help the chemotherapy to do its job. You have to be able to let it ransack your energy, do what it needs to do and keep yourself pumped full of food. I realise that it is different for everyone, but that is how it seems to be for me.
There is no doubt that with my team at the Royal Marsden I am receiving the best care that money can buy or indeed not buy (given that I am receiving this care courtesy of the NHS). So far they have done everything according to plan and I have done everything that has been asked of me.
The treatment is formulaic and procedural. There are obvious limitations to what medical science knows about cancer and how to treat it. An example of what I am talking about can be seen from the research that the Marsden are helping to pioneer i.e. genetically tailored treatment. Rather than having a proscribed treatment path patients will, sometime in the future, have treatments tailored to their genetic makeup and predispositions.
For now, I have the ST03 clinical trial http://thebookofsilence.blogspot.com/2010/03/down-to-business.html, including the might of the surgeon's knife.
Since diagnosis I have been living a healthy lifestyle and have made lots of changes that will do the healing process no harm. Also, remember that in the months leading up to Christmas I made concerted effort to reduce my weight and get fit, which meant that I was eating healthily, taking plenty of exercise and hardly drinking.
This year my total alcoholic intake is 3 glasses of wine and half a bottle of beer, despite not being diagnosed until the second week of February.
Other changes that have since been actioned include
Of course, going forward, there are some major unknowns, although I should state that I am perfectly relaxed and optimistic about them
Illness in my late 20's took me on a journey of introspection in my early 30's and I feel that it is time for me to make use of the things that I feel I learned during that period. Whether they will do me any good is difficult to measure because there isn't a control group. The same can be said of the medical treatment because let's say that the standard medical treatment did not achieve any shrinkage of the tumour before operation, would that indicate that the treatment had not worked or would it indicate that it had halted the growth of an aggressive tumour? These questions seem to be beyond even the best of our medical staff as the truth is that they don't know exactly
I feel perfectly relaxed about the whole process because I will not know what the pre-operation situation is until I am assessed again after chemotherapy. The most important thing between now and then is to stay happy, relaxed and otherwise healthy.
Let's just say that I am glad that I am not a self-employed manual worker. If you had to work through this in a manual job then I don't think it would help the chemotherapy to do its job. You have to be able to let it ransack your energy, do what it needs to do and keep yourself pumped full of food. I realise that it is different for everyone, but that is how it seems to be for me.
There is no doubt that with my team at the Royal Marsden I am receiving the best care that money can buy or indeed not buy (given that I am receiving this care courtesy of the NHS). So far they have done everything according to plan and I have done everything that has been asked of me.
The treatment is formulaic and procedural. There are obvious limitations to what medical science knows about cancer and how to treat it. An example of what I am talking about can be seen from the research that the Marsden are helping to pioneer i.e. genetically tailored treatment. Rather than having a proscribed treatment path patients will, sometime in the future, have treatments tailored to their genetic makeup and predispositions.
For now, I have the ST03 clinical trial http://thebookofsilence.blogspot.com/2010/03/down-to-business.html, including the might of the surgeon's knife.
Since diagnosis I have been living a healthy lifestyle and have made lots of changes that will do the healing process no harm. Also, remember that in the months leading up to Christmas I made concerted effort to reduce my weight and get fit, which meant that I was eating healthily, taking plenty of exercise and hardly drinking.
This year my total alcoholic intake is 3 glasses of wine and half a bottle of beer, despite not being diagnosed until the second week of February.
Other changes that have since been actioned include
- Cutting out all bad lifestyle habits
- Making sure I get plenty of sleep
- Creating a clear and uncluttered living, working and recovery area (courtesy of many helpers)
- Cutting out heavy exercise whilst keeping exercise levels up all through the winter
- Obviating the rigours of the daily commute (courtesy of my colleagues)
Of course, going forward, there are some major unknowns, although I should state that I am perfectly relaxed and optimistic about them
- How aggressive is the cancer?
- Will it respond well to the course of chemotherapy?
- Will the operation be successful?
- Will the subsequent cycles of chemotherapy remove any remaining traces of the cancer?
- Will the underlying problem that caused the cancer be dealt with by the treatment?
Illness in my late 20's took me on a journey of introspection in my early 30's and I feel that it is time for me to make use of the things that I feel I learned during that period. Whether they will do me any good is difficult to measure because there isn't a control group. The same can be said of the medical treatment because let's say that the standard medical treatment did not achieve any shrinkage of the tumour before operation, would that indicate that the treatment had not worked or would it indicate that it had halted the growth of an aggressive tumour? These questions seem to be beyond even the best of our medical staff as the truth is that they don't know exactly
- What has caused the tumour
- How long it has been present
- The rate at which it is growing
- The rate at which it is spreading
I feel perfectly relaxed about the whole process because I will not know what the pre-operation situation is until I am assessed again after chemotherapy. The most important thing between now and then is to stay happy, relaxed and otherwise healthy.
Sunday 4 April 2010
Taking Care of the Kids
I haven't written much about the kids on the blog, but they are of course always uppermost in Kitten and my thoughts and deeds. I had succumbed this year and, at the time I was diagnosed, we were planning a trip to Disney Florida. Our year now takes on a completely different light.
Kitten has many years experience of child-care experience, whether nannying for investment bankers in Hong Kong, looking after day nurseries or simply child minding. She harbours a great deal of knowledge of how to get the best out of children and how to cope with different situations. Parenting your own children brings its own challenges but dealing with the current situation is something that neither or us would have expected or anticipated.
In the initial phases of living with the disease it is inevitable that the focus has to be on the person who is ill. However, you do your best to help the kids and we started the process early. We discussed our approach with each other and we sought out guidance from professionals, via the hospital, because that help is there.
I am a person who generally believes that problems can be dealt with and kept within the family, but something like this is outside our experience and our children are still at very vulnerable ages (5 and 8).
I'm not one for support groups, and whilst I would support Kitten in any way she wished to approach the issue, the Marsden offered us help via their on-site child pscyhologist.
Before we saw the psychologist we had already talked to the children and told them all about my problem and about cancer. Children are perceptive and even if they don't know what is wrong, they know that something is wrong. We preferred to include them directly in the situation so that we could all pull together as a family.
Everybody's situation is different and there are lots of ways of addressing the issues but ours has always been one of openness. Of course, once you have brought your children in it then becomes another facet to the everyday parenting issues that you have to deal with. It is not nice to have to put something like that on your children and it also makes things more difficult when there may be other issues that you are aleady trying to manage with your children at the time.
The psychologist at the Marsden felt that we were already doing a good job and was very helpful. We have had two visits (the second being on the morning that I started my chemotherapy) and the sessions, which are yet to involve the children, have focused more on dealing with existing issues that may have been magnified by the addition of my disease.
Suffice to say that we have made a lot of effort to help our children, as has everyone around us including the childrens' school who have been very supportive.
Before I was diagnosed, our daughter was the cause of most of our headaches. She is a strong and willful character but also very sensitive and loving, it is pleasing to see that she has changed enormoulsy for the better over the last couple of months and is very helpful and considerate. She still has her moments, but there aren't many children who don't. The advantage of dealing with "Boogle" is that she will speak her mind, so you can undertand how she is feeling and you can help her.
Little Huffty on the other hand has presented different challenges. He has traditionally been the easy going "compliant" one. The problem for us was that he was ill with a nasty combination of infections shortly before I was diagnosed and his recovery seemed to concide with a more general opening of his imagination. His own situation has revolved around fear. He suddenly became not just afraid of the dark but every noise or movement that he sensed. This spilled over from bedtime into daytime with not wanting to go to a different part of the house on his own. It may be that his initial predicament has been exasperated by fear over his daddy's illness. We don't know that but it is unlikely to have helped the little fella.
Kitten and I struggled to get a decent night's sleep for a good couple of months at a time when we could have used it most, and that is difficult but things are now easing.
It was during this latest visit that it dawned on us that the problems that we were now dealing with were focused on Huffty rather than Boogle. The dynamic in the family seems to have changed. We were offered some practical advice on how to break down Huffty's fears step by step and we are using this to good effect in tandem with help that we have received from our family doctor.
We seem to be making good progress as a family unit and the fact that my body seems to be dealing with the chemotherapy will make it easier for us to continue to progress.
First and foremost the journey with cancer is about survival, but the cloesr you can get to normality, keeping the love rooted where it belongs the better. Ultimately, you may not have a choice in what your body decides to do, but I believe that one's state of mind will have an effect of sorts upon it.
Assuming that we all make it to the otherside "of the pond" the family will be a stronger unit and we will all be stronger people. I don't expect it to be plain sailing but we have much more cause to be optimistic than a couple of months ago.
Kitten has many years experience of child-care experience, whether nannying for investment bankers in Hong Kong, looking after day nurseries or simply child minding. She harbours a great deal of knowledge of how to get the best out of children and how to cope with different situations. Parenting your own children brings its own challenges but dealing with the current situation is something that neither or us would have expected or anticipated.
In the initial phases of living with the disease it is inevitable that the focus has to be on the person who is ill. However, you do your best to help the kids and we started the process early. We discussed our approach with each other and we sought out guidance from professionals, via the hospital, because that help is there.
I am a person who generally believes that problems can be dealt with and kept within the family, but something like this is outside our experience and our children are still at very vulnerable ages (5 and 8).
I'm not one for support groups, and whilst I would support Kitten in any way she wished to approach the issue, the Marsden offered us help via their on-site child pscyhologist.
Before we saw the psychologist we had already talked to the children and told them all about my problem and about cancer. Children are perceptive and even if they don't know what is wrong, they know that something is wrong. We preferred to include them directly in the situation so that we could all pull together as a family.
Everybody's situation is different and there are lots of ways of addressing the issues but ours has always been one of openness. Of course, once you have brought your children in it then becomes another facet to the everyday parenting issues that you have to deal with. It is not nice to have to put something like that on your children and it also makes things more difficult when there may be other issues that you are aleady trying to manage with your children at the time.
The psychologist at the Marsden felt that we were already doing a good job and was very helpful. We have had two visits (the second being on the morning that I started my chemotherapy) and the sessions, which are yet to involve the children, have focused more on dealing with existing issues that may have been magnified by the addition of my disease.
Suffice to say that we have made a lot of effort to help our children, as has everyone around us including the childrens' school who have been very supportive.
Before I was diagnosed, our daughter was the cause of most of our headaches. She is a strong and willful character but also very sensitive and loving, it is pleasing to see that she has changed enormoulsy for the better over the last couple of months and is very helpful and considerate. She still has her moments, but there aren't many children who don't. The advantage of dealing with "Boogle" is that she will speak her mind, so you can undertand how she is feeling and you can help her.
Little Huffty on the other hand has presented different challenges. He has traditionally been the easy going "compliant" one. The problem for us was that he was ill with a nasty combination of infections shortly before I was diagnosed and his recovery seemed to concide with a more general opening of his imagination. His own situation has revolved around fear. He suddenly became not just afraid of the dark but every noise or movement that he sensed. This spilled over from bedtime into daytime with not wanting to go to a different part of the house on his own. It may be that his initial predicament has been exasperated by fear over his daddy's illness. We don't know that but it is unlikely to have helped the little fella.
Kitten and I struggled to get a decent night's sleep for a good couple of months at a time when we could have used it most, and that is difficult but things are now easing.
It was during this latest visit that it dawned on us that the problems that we were now dealing with were focused on Huffty rather than Boogle. The dynamic in the family seems to have changed. We were offered some practical advice on how to break down Huffty's fears step by step and we are using this to good effect in tandem with help that we have received from our family doctor.
We seem to be making good progress as a family unit and the fact that my body seems to be dealing with the chemotherapy will make it easier for us to continue to progress.
First and foremost the journey with cancer is about survival, but the cloesr you can get to normality, keeping the love rooted where it belongs the better. Ultimately, you may not have a choice in what your body decides to do, but I believe that one's state of mind will have an effect of sorts upon it.
Assuming that we all make it to the otherside "of the pond" the family will be a stronger unit and we will all be stronger people. I don't expect it to be plain sailing but we have much more cause to be optimistic than a couple of months ago.
Saturday 3 April 2010
Ten Day Check Up and Important Issues
The ten day check up went well.
All my body immune system tools are at normal levels and my haemoglobin levels are virtually back to normal (now 13.6 against normal range of 14-18). Remember that my haemoglobin levels dropped as low as 7.5, which is a "life-threatening" and transfusion level. Whilst I am still not feeling like climbing Everest I am feeling and looking a whole lot better than a few months ago and absorbing the chemotherapy without distress.
I had plenty of time to kill whilst I was waiting for a doctor to come on the ward so I visited Naughty Norman who was in the bed next to me when I had chemotherapy. When I saw him a week ago he was looking in rude health for someone who was 84 let alone someone who was 84 with cancer. He was poorly yesterday, but I sat and we chatted for half an hour.
When I eventually spoke to a doctor it was just to ask if I was ok, which I seemed to be, so dashed over to Notoplip and Sushi's picking up Kitten, Boogle and The Huffty "en route". Notoplip had paused the Manchester Utd v Chelsea game (ah the wonder of Sky +). What a beautiful victory.
Before all you Reds start going on about offside, what about Machieda's handball eh, I haven't heard any of you banging on about that!! The injustice of the offside was fantastic especially after the blatant penalty that should have been given against Neville for taking out Anelka but it's just great thinking about Sir Alex Ferguson spitting his tea everywhere.
Talking of football, we went as a family to Notoplip and D A Decorator's club yesterday for a 5 a side family day. The rain lashed down for the duration of the tournament and when we went home the sun came out.
Notoplip, D.A., Deano and "Badly in Need of a Haircut" were disappointed to finish runners up but quality can't always shine through when the pace has dropped to "running down the road trying not to drop your kebab levels". It was a dad's five a side competition and I guess that there were a few achey dads around today. Whilst Notoplip and I were watching the football today he had to get up off the sofa and walk around the room at regular intervals to ensure that complete seizure did not visit. As for me I was an interesting guest, spending most of my time dozing on the sofa.
What I didn't say in yesterday's post was that Kitten "expressed her displeasure" on Thursday evening because she feels that I have done too much. I promised to start taking it easy now that I have established a pattern.
Nearly time to help the kids eat their Easter Eggs. Calories are king
All my body immune system tools are at normal levels and my haemoglobin levels are virtually back to normal (now 13.6 against normal range of 14-18). Remember that my haemoglobin levels dropped as low as 7.5, which is a "life-threatening" and transfusion level. Whilst I am still not feeling like climbing Everest I am feeling and looking a whole lot better than a few months ago and absorbing the chemotherapy without distress.
I had plenty of time to kill whilst I was waiting for a doctor to come on the ward so I visited Naughty Norman who was in the bed next to me when I had chemotherapy. When I saw him a week ago he was looking in rude health for someone who was 84 let alone someone who was 84 with cancer. He was poorly yesterday, but I sat and we chatted for half an hour.
When I eventually spoke to a doctor it was just to ask if I was ok, which I seemed to be, so dashed over to Notoplip and Sushi's picking up Kitten, Boogle and The Huffty "en route". Notoplip had paused the Manchester Utd v Chelsea game (ah the wonder of Sky +). What a beautiful victory.
Before all you Reds start going on about offside, what about Machieda's handball eh, I haven't heard any of you banging on about that!! The injustice of the offside was fantastic especially after the blatant penalty that should have been given against Neville for taking out Anelka but it's just great thinking about Sir Alex Ferguson spitting his tea everywhere.
Talking of football, we went as a family to Notoplip and D A Decorator's club yesterday for a 5 a side family day. The rain lashed down for the duration of the tournament and when we went home the sun came out.
Notoplip, D.A., Deano and "Badly in Need of a Haircut" were disappointed to finish runners up but quality can't always shine through when the pace has dropped to "running down the road trying not to drop your kebab levels". It was a dad's five a side competition and I guess that there were a few achey dads around today. Whilst Notoplip and I were watching the football today he had to get up off the sofa and walk around the room at regular intervals to ensure that complete seizure did not visit. As for me I was an interesting guest, spending most of my time dozing on the sofa.
What I didn't say in yesterday's post was that Kitten "expressed her displeasure" on Thursday evening because she feels that I have done too much. I promised to start taking it easy now that I have established a pattern.
Nearly time to help the kids eat their Easter Eggs. Calories are king
Friday 2 April 2010
Easter Break
A 10 day clinical trial check on Saturday morning precludes a journey away this weekend.
Even so, it will be great to spend some decent time with the family.
Whilst I have been getting myself working from home, Kitten has been doing her chores outside the house in order to give me space.
I've done a lot more this week than perhaps I should but it means that I now have environment where all possibilities can be accommodated going forward.
The kids have been off since Wednesday afternoon and they spent that afternoon and all day Thursday at the local theme park - We're getting good value for our annual passes and the kids are having fun! Yesterday was one of Notoplip's son's 2nd birthday so that will have added an extra dimension to their day.
There was some good news for another friend "Mr Baboon" yesterday who's baby was born premature a couple of weeks ago. Baby is doing very well and should be home in a couple of weeks - RAAAAA (he will understand that reference).
I will be taking each day as it comes this weekend but hoping the weather is good so we can all get out and about.
I'm still feeling good and the only negative thing to report is that, despite eating like a horse over the last few days, I have lost a few pounds. I now weigh 11st and I was hoping to build myself up to 11 and a half pre-op but that looks less likely now. I'm enjoying my food so I will keep eating and also start to introduce some exercise again.
Since the City outdoor rink closed in early March "Boogle" and I haven't been ice-skating. Our regular venue on the other side of London is currently being reconstructed and may not be open for a few weeks.
In the meantime I will look to walking (assuming that the weather improves) and I may buy a bike so that I can strike out a little. Unfortunately, I am not feeling fit enough to start training for my four mile running race against "Super Frank" yet. I hear that he is suffering with his knees a the moment, so by the time I get to him he may be completely crocked.
There seems to be a few Easter Eggs around the house and I don't think that the kids should eat them all - YUM.
As a final note, today could signal the end of an era in our house. I am thinking of taking down my record decks in the "Music Room" (which looks more like a kids play room), so that the kids have somewhere for themselves. I haven't DJed for over a year and don't intend to, so it makes sense but there are still a good few memories there.
Even so, it will be great to spend some decent time with the family.
Whilst I have been getting myself working from home, Kitten has been doing her chores outside the house in order to give me space.
I've done a lot more this week than perhaps I should but it means that I now have environment where all possibilities can be accommodated going forward.
The kids have been off since Wednesday afternoon and they spent that afternoon and all day Thursday at the local theme park - We're getting good value for our annual passes and the kids are having fun! Yesterday was one of Notoplip's son's 2nd birthday so that will have added an extra dimension to their day.
There was some good news for another friend "Mr Baboon" yesterday who's baby was born premature a couple of weeks ago. Baby is doing very well and should be home in a couple of weeks - RAAAAA (he will understand that reference).
I will be taking each day as it comes this weekend but hoping the weather is good so we can all get out and about.
I'm still feeling good and the only negative thing to report is that, despite eating like a horse over the last few days, I have lost a few pounds. I now weigh 11st and I was hoping to build myself up to 11 and a half pre-op but that looks less likely now. I'm enjoying my food so I will keep eating and also start to introduce some exercise again.
Since the City outdoor rink closed in early March "Boogle" and I haven't been ice-skating. Our regular venue on the other side of London is currently being reconstructed and may not be open for a few weeks.
In the meantime I will look to walking (assuming that the weather improves) and I may buy a bike so that I can strike out a little. Unfortunately, I am not feeling fit enough to start training for my four mile running race against "Super Frank" yet. I hear that he is suffering with his knees a the moment, so by the time I get to him he may be completely crocked.
There seems to be a few Easter Eggs around the house and I don't think that the kids should eat them all - YUM.
As a final note, today could signal the end of an era in our house. I am thinking of taking down my record decks in the "Music Room" (which looks more like a kids play room), so that the kids have somewhere for themselves. I haven't DJed for over a year and don't intend to, so it makes sense but there are still a good few memories there.
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