It has been confirmed today that I do not have secondary cancer. The biopsy of the abdomen did not show anything malignant.
Just to re-iterate; secondary cancer is technically referred to as a Metastasis and refers to a cancer spreading from one organ to another. The transport happens via the body's lymph.
The key issue is that surgery was not an option had the biopsy shown evidence of secondary cancer. The outlook would have been bleak, but now that both of the doubtful sites (liver and abdomen) are clear it's likely to be no worse than a fortnight in the chalets at Butlins.
The route from here seems as follows:
I will have an endoscopic ultrasound (EUS) procedure at the Royal Marsden Fulham on 19th March (I was advised today). This procedure will confirm not just the length but the depth of the tumour - the length of the tumour has been known since the original endoscopy to test for ulcers and coeliac disease.
The following week (beginning the 22nd) I will meet with the team to discuss the results. The size of the tumour is important because it will determine the number of chemotherapy cycles I will have before the operation. The initial suggestion was 3 cycles, but this could be increased to as many as 6 cycles. The point is to reduce the tumour as much as possible to reduce the severity of the operation.
I have been advised that chemotherapy is likely to start at the end of the week commencing 22nd March or the beginning of the week commencing 29th March.
Naturally, I am happy that I don't have secondary cancer. I am, however, nervous about the length of time until the endoscopic ultrasound as I would rather we got on with the healing rather than the diagnostic process. When discussing the situation this morning with my case nurse she pointed out that if the cancer was able to metastasise in the meantime then they would probably not be able to contain the disease anyway.
Before today's news I was intending to post an article about the changes I am making and about getting the best out of the chemotherapy. I will post my thoughts this evening as this really is the next stage. There is research for me to do on the clinical trial but it is now time to focus on how I get my body to the operating table in the best possible frame. I feel that to be the primary factor in how my recovery shapes up.
Most importantly, assuming that I make it through this process I want to come out with the best opportunity of avoiding any future relapse. Right now I, and my close circle, are living in a shadow. I want there to be sunlight at the end of the journey.
Tuesday, 9 March 2010
Monday, 8 March 2010
Time to wind down
I guess that later this week I will have a definite answer as to whether or not the surgeon will be polishing his scalpel in readiness for me this summer. As many of you know, I have always treated my body as a holy place of worship so I will expect any instrument placed therein to give a "Colgate 'ting' and shine" before being expertly applied.
After another busy weekend it is time for me to start winding down. I've got plenty of work to do to make sure my role is covered at the office. I also want to do enough research on the chemotherapy options to have an informed discussion with the oncology team.
The most important thing though is to ready myself for the changes that are creeping up over the horizon.
On that note "Danny the Carpet Man" has been and gone this evening (good job Danny!). Kitten is either taking a restful bath (as she suggested) or she is upstairs stroking and nuzzling her newly acquired flooring.
The bedroom is coming together, so just the cupboards and the all important "World Cup TV" to go. How will I have any of my mates visit in the summer unless there is something decent to watch the footie on?
Mmmmmm, a Budweiser mini-fridge may be a negative though given the current circumstances.
After another busy weekend it is time for me to start winding down. I've got plenty of work to do to make sure my role is covered at the office. I also want to do enough research on the chemotherapy options to have an informed discussion with the oncology team.
The most important thing though is to ready myself for the changes that are creeping up over the horizon.
On that note "Danny the Carpet Man" has been and gone this evening (good job Danny!). Kitten is either taking a restful bath (as she suggested) or she is upstairs stroking and nuzzling her newly acquired flooring.
The bedroom is coming together, so just the cupboards and the all important "World Cup TV" to go. How will I have any of my mates visit in the summer unless there is something decent to watch the footie on?
Mmmmmm, a Budweiser mini-fridge may be a negative though given the current circumstances.
Sunday, 7 March 2010
Kitten Let Loose
Ah ha! Swordfish has invited moi to be on his blog team. This allows me to write my own interpretation of events - the truth!
He is standing behind me as I write, correcting my punctuation, spellings, grammar and also trying to dictate what I should write.
I will wait my turn!
He is standing behind me as I write, correcting my punctuation, spellings, grammar and also trying to dictate what I should write.
I will wait my turn!
Saturday, 6 March 2010
Standards of Care
The first thing to say is that
Living in the same borough as The Royal Marsden is a positive boon.
I should start by saying that I have never received poor health care from the National Health Service. In the main, I can impart good experiences. Where I have had gripes it is with how places are run rather than lack of care by medical staff. Having said that I can't say that my wife has always been as fortunate as I have.
Regardless of past experiences what I can say is that the care provided by the Marsden seems to be on a different level to anything that I have encountered before. It is clear that they receive a healthy sized chunk of the pie from the NHS but there is also clear evidence of investment in the process and that the investment is being appropriated responsibly and thoughtfully to make the patient experience better. There are many things that I can talk about regarding structure, processes and facilities but the overriding sense of the place is well run and, whilst "happy" would be an inappropriate word to use, in the context of the illnesses that the patients are suffreing, "contented" might not seem out of place.
In any organisation of such size I am sure that there are lots of problems behind the scenes, and my experience is not without its flaws, but here is a bullet point list of some of the good things that I have encountered. Some of the points are quite general but others are little things that I believe improve the patient's experience. Some of the points (such as pastoral care) are not as relevant in other aspects of medicine
Since I have been back to my GP I have also had great support from the head of the practice who has provided me with an "ear" outside the Marsden an has also done some research into the clinical trial that has been offered. She has suggested some incisive questions for me to pose. The area of clinical trials is perhaps the one aspect of my consultations which has left me less satisfied. There is a need to perform trials to advance care for all patients but, after the initial consultation I was left with feeling that a more vulnerable patient might have subscribed immediately without thought. I also feel that some relevant information wasn't provided. I will be discussing the issues with the team before making any decisions and will post my thoughts here later.
I have spoke with "annstonefamily" today and it is encouraging to get advice from people who are coming out of the other end of the "sausage machine". I have had a chance to ask about some of the challenges of the chemotherapy and the surgery from someone who has experienced it. I very much hope that they get the "all clear" in a few weeks time.
"If the NHS is a post code lottery then I have won it".
Living in the same borough as The Royal Marsden is a positive boon.
I should start by saying that I have never received poor health care from the National Health Service. In the main, I can impart good experiences. Where I have had gripes it is with how places are run rather than lack of care by medical staff. Having said that I can't say that my wife has always been as fortunate as I have.
Regardless of past experiences what I can say is that the care provided by the Marsden seems to be on a different level to anything that I have encountered before. It is clear that they receive a healthy sized chunk of the pie from the NHS but there is also clear evidence of investment in the process and that the investment is being appropriated responsibly and thoughtfully to make the patient experience better. There are many things that I can talk about regarding structure, processes and facilities but the overriding sense of the place is well run and, whilst "happy" would be an inappropriate word to use, in the context of the illnesses that the patients are suffreing, "contented" might not seem out of place.
In any organisation of such size I am sure that there are lots of problems behind the scenes, and my experience is not without its flaws, but here is a bullet point list of some of the good things that I have encountered. Some of the points are quite general but others are little things that I believe improve the patient's experience. Some of the points (such as pastoral care) are not as relevant in other aspects of medicine
- The hospitals are clean
- Cleanliness procedures seem to be followed as you would expect (no slapdash behaviour)
- You can see that an effort has been made to keep areas uncluttered (it helps them look physically sterile)
- Your case is handled by a team (all of whom seem to be well briefed)
- You have a case nurse who acts as a coordinator and reference point
- Staff are polite, well, informed, direct, honest in their appraisal and they LISTEN
- Care across different departments is coordinated removing duplication where possible
- Pastoral care is available as an integral part of your care should you feel that you would benefit
- You are advised if clinics are running late ( a large notice board in outpatients is a simple but very useful tool for keeping you at ease)
Since I have been back to my GP I have also had great support from the head of the practice who has provided me with an "ear" outside the Marsden an has also done some research into the clinical trial that has been offered. She has suggested some incisive questions for me to pose. The area of clinical trials is perhaps the one aspect of my consultations which has left me less satisfied. There is a need to perform trials to advance care for all patients but, after the initial consultation I was left with feeling that a more vulnerable patient might have subscribed immediately without thought. I also feel that some relevant information wasn't provided. I will be discussing the issues with the team before making any decisions and will post my thoughts here later.
I have spoke with "annstonefamily" today and it is encouraging to get advice from people who are coming out of the other end of the "sausage machine". I have had a chance to ask about some of the challenges of the chemotherapy and the surgery from someone who has experienced it. I very much hope that they get the "all clear" in a few weeks time.
Friday, 5 March 2010
The Power of Music
I've recently acquire an iPod (nice one BigG). I haven't bought into the MP3 player phenomenom up until now because years of constant exposure to music whilst DJing left me disinterested in listening during my spare time. Instead I've spent "downtime" like on the train to and from work reading or just relaxing.
I've realised that there will be periods where I am not going to be able to do much so I feel that music will help to fill this gap especially as I believe that it has an ability to touch the emotions and lift the spirit in a way that other media cannot. I consider music to be the "food of the heart and the word of the soul". It is not restricted by the linear format of words and, personally, I feel it also has a more direct and deeper connection to the emotions than visuals do.
I was brought up on rock music and this seems to form the bulk of my iPod selection rather than the dance music that I partied to and DJed for years. This is partly because the analogue (vinyl) based dance music I own doesn't make the transition to MP3 player so well, but also because I am enjoying taking "fresh ears" to the music of my youth.
That said, AC/DC and Led Zeppelin have been on hold during this last week or so, as I have been continously listening to a CD called the "Eternal OM", which contains exactly what it says on the tin. Sixty minutes of "Om" or "Aum" ing. Now whatever your opinion on the subject of meditation, tuning into the repetitive but resonant sound, whether as foreground or background music, has had a deeply grounding affect and has helped me adjust to what seemed to be a slightly surreal reality. It has helped me to concentrate my thoughts and stay focused. It has also provided a source of amusement for the kids who love it.
I put the iPod on "Shuffle" (random play) for the first time when walking from the station to work this morning. The two tracks it threw up before I arrived??
Gimme All Your Lovin' - ZZ TOP
Sick Again - Led Zeppelin
What price on that - perhaps the Aum has got further into my subconscious than I thought?
Rather than having a religion or set of beliefs I tend to adopt what I feel fits the occasion. I use whatever I feel stimulates my imagination to help me achieve my goals and I anticipate that there will be plenty of space for the esoteric on my journey as well as for the oncologists and the surgeon's knife. I am happy to use anything that I feel will be to my advantage.
I've realised that there will be periods where I am not going to be able to do much so I feel that music will help to fill this gap especially as I believe that it has an ability to touch the emotions and lift the spirit in a way that other media cannot. I consider music to be the "food of the heart and the word of the soul". It is not restricted by the linear format of words and, personally, I feel it also has a more direct and deeper connection to the emotions than visuals do.
I was brought up on rock music and this seems to form the bulk of my iPod selection rather than the dance music that I partied to and DJed for years. This is partly because the analogue (vinyl) based dance music I own doesn't make the transition to MP3 player so well, but also because I am enjoying taking "fresh ears" to the music of my youth.
That said, AC/DC and Led Zeppelin have been on hold during this last week or so, as I have been continously listening to a CD called the "Eternal OM", which contains exactly what it says on the tin. Sixty minutes of "Om" or "Aum" ing. Now whatever your opinion on the subject of meditation, tuning into the repetitive but resonant sound, whether as foreground or background music, has had a deeply grounding affect and has helped me adjust to what seemed to be a slightly surreal reality. It has helped me to concentrate my thoughts and stay focused. It has also provided a source of amusement for the kids who love it.
I put the iPod on "Shuffle" (random play) for the first time when walking from the station to work this morning. The two tracks it threw up before I arrived??
Gimme All Your Lovin' - ZZ TOP
Sick Again - Led Zeppelin
What price on that - perhaps the Aum has got further into my subconscious than I thought?
Rather than having a religion or set of beliefs I tend to adopt what I feel fits the occasion. I use whatever I feel stimulates my imagination to help me achieve my goals and I anticipate that there will be plenty of space for the esoteric on my journey as well as for the oncologists and the surgeon's knife. I am happy to use anything that I feel will be to my advantage.
Thursday, 4 March 2010
Back to Life - Back to Reality
In order to ram-raid through the amount of tests I have just been through you have to be self-absorbed.
I have still been keeping an eye on everything and everyone around me and there comes a time when you have to reconnect and come to the surface and breath.
I've got work to ship and there are also plenty of events happening amongst my family and friends. "Roxy's" (my cousin's) pregnancy was announced about the same time as my illness was discovered (I hope that you are in fine fettle, Roxy) and another cousin (who I shall refer to as "Swelly Belly" - in reference to the affect of gluten upon her system) got married a couple of weeks ago and since discovered she is pregnant! Congratulations to her and her partner.
I spoke to Swelly Belly on the morning of her wedding and it was an emotionally charged conversation. One of the few times that I could feel myself "cracking". I couldn't make it to Wales because I wasn't feeling great and my daughter had only just arrived back from my parents. But Swelly Belly grabbed a drink and gave me a call from outside the evening venue whilst over-looking the River Taff, which was a nice touch and made me feel like I was there. The conversation was as relaxed as the morning's was not.
With only the endoscopy outstanding I am looking forward to a period of normality before, hopefully, starting route A of chemo / operation / chemo / return to good health.
I have still been keeping an eye on everything and everyone around me and there comes a time when you have to reconnect and come to the surface and breath.
I've got work to ship and there are also plenty of events happening amongst my family and friends. "Roxy's" (my cousin's) pregnancy was announced about the same time as my illness was discovered (I hope that you are in fine fettle, Roxy) and another cousin (who I shall refer to as "Swelly Belly" - in reference to the affect of gluten upon her system) got married a couple of weeks ago and since discovered she is pregnant! Congratulations to her and her partner.
I spoke to Swelly Belly on the morning of her wedding and it was an emotionally charged conversation. One of the few times that I could feel myself "cracking". I couldn't make it to Wales because I wasn't feeling great and my daughter had only just arrived back from my parents. But Swelly Belly grabbed a drink and gave me a call from outside the evening venue whilst over-looking the River Taff, which was a nice touch and made me feel like I was there. The conversation was as relaxed as the morning's was not.
With only the endoscopy outstanding I am looking forward to a period of normality before, hopefully, starting route A of chemo / operation / chemo / return to good health.
Wednesday, 3 March 2010
Now I know what it feels like to be "drunk" again
When I was coming around from the anaesthetic in the recovery room yesterday I remember trying to say something to one of the theatre nurses.
I think it was just a wisecrack but, whilst I was forming the words beautifully in my mind, things were going wrong somewhere between the picture I had in my head and the message reaching the nurse's ears.
Whatever I was saying was coming out as "bbbblllllbbbbllbllblblbbl".
I'm not one to give up easily, but I could see that by about the fifth time she was getting a bit sick of saying "I'm really sorry, but I can't understand what you are saying".
I just gave up, opting for a thumbs up sign and a gurning grin and I went back to snooze.
I was on the level where, had I been holding a kebab in hand, I could have had a meaningful conversation with the chaps in Chip Pan Alley last Friday night ( http://thebookofsilence.blogspot.com/2010/02/notoplip-shogun-and-kebab-frenzy.html )
I think it was just a wisecrack but, whilst I was forming the words beautifully in my mind, things were going wrong somewhere between the picture I had in my head and the message reaching the nurse's ears.
Whatever I was saying was coming out as "bbbblllllbbbbllbllblblbbl".
I'm not one to give up easily, but I could see that by about the fifth time she was getting a bit sick of saying "I'm really sorry, but I can't understand what you are saying".
I just gave up, opting for a thumbs up sign and a gurning grin and I went back to snooze.
I was on the level where, had I been holding a kebab in hand, I could have had a meaningful conversation with the chaps in Chip Pan Alley last Friday night ( http://thebookofsilence.blogspot.com/2010/02/notoplip-shogun-and-kebab-frenzy.html )
Tuesday, 2 March 2010
"Good Dope - It's a Gas"
Kitten and "The Huffty" (my son) collected me from the Fulham Royal Marsden at about 4:30pm and we arrived home a little over an hour later. I've been dozing since, courtesy of the general anaesthetic.
I hadn't done my homework on exactly what a laparoscopy entails as I understood it to be a fairly minor procedure and was more concerned about preparing myself for any news that might emanate from it.
The news was encouraging but not conclusive. Whilst the consultant did take biopsies of the abdominal nodes for further analysis he said that they did not give him cause for concern. He did not commit to saying that any growths were benign but the inference was that it was his expection that they would be.
It takes seven to ten days to confirm the analysis of a biopsy and the Marsden "gastro" team meet every Friday, so I imagine that I will find out what my treatment program will be after Friday, 12th March.
Meanwhile I am quite sore and a little drowsy. I knew that a laparoscopy involved having "a camera through the belly" but I chose not to do any homework as I was more focused on staying relaxed around news of the results. What I didn't realise was that "the abdomen is usually insufflated, or essentially blown up like a balloon, with carbon dioxide gas".
For those interested in the gory details, here is a useful Wikipedia explanation http://en.wikipedia.org/wiki/Laparoscopic_surgery
Time for another snooze.
I hadn't done my homework on exactly what a laparoscopy entails as I understood it to be a fairly minor procedure and was more concerned about preparing myself for any news that might emanate from it.
The news was encouraging but not conclusive. Whilst the consultant did take biopsies of the abdominal nodes for further analysis he said that they did not give him cause for concern. He did not commit to saying that any growths were benign but the inference was that it was his expection that they would be.
It takes seven to ten days to confirm the analysis of a biopsy and the Marsden "gastro" team meet every Friday, so I imagine that I will find out what my treatment program will be after Friday, 12th March.
Meanwhile I am quite sore and a little drowsy. I knew that a laparoscopy involved having "a camera through the belly" but I chose not to do any homework as I was more focused on staying relaxed around news of the results. What I didn't realise was that "the abdomen is usually insufflated, or essentially blown up like a balloon, with carbon dioxide gas".
For those interested in the gory details, here is a useful Wikipedia explanation http://en.wikipedia.org/wiki/Laparoscopic_surgery
Time for another snooze.
Monday, 1 March 2010
The Spirit of Change
Today is St. David's day so it seems appropriate to take a take a poetic, philosophical and musical slant to recent events.
The current period is obviously a period of great change for me and those close to me. Change can manifest in many different ways. I always liked the analogy of riding a bicycle where as you ride you constantly adjust. The constant adjustment is what keeps the bike in a straight line. This kind of change is snake like; a slow undulating transition. If you don't constantly adjust when riding a bike then you will carry on a straight line for a while but then the front wheel will start to wobble and you'll end up in a sticky heap on the floor. This kind of change is frog like. It appears to present itself in a quantum (just like a frog leaping) but in fact the energy has been accumulating over a period of time.
The moral is that if you do not go to change then it will come to you.
When change comes to you it can be difficult to deal with because it already has great momentum. I wrote the poem "The Spirit of Change" years ago to articulate this point. The poem was written on the night of a total eclipse of the full moon, an occasion which is viewed by many to be symbolic of great change. I was watching a football match on television when I had the central image of a stallion jumping through a wall and bricks flying everywhere. Football fans will remember the match because it was a hugely entertaining encounter between Liverpool and Newcastle (in 1996) which Liverpool won 4-3. Their victory effectively ended Kevin Keegan's attempt to win the Premiership with Newcastle.
When I wrote the poem I developed the image in my mind as if the horse had been frightened by a fire in the stable and had reared and kicked before bursting through the door and into the fields, galloping against the backdrop of a full moon.
If you find it difficult to read the text then click on it and it will appear in a larger window.
When I read the poem now it seems to me that my illness is somewhat like the "Spirit of Change" and that is why I don't view the situation as a fight. The horse has already bolted and it requires craft to bring it under control.
Bringing the cancer under control is my "The Horse Whisperer's" job. I have to keep myself happy and focused, to narrow the angles for the horse and bring it to heel. If I have to use some brute force then I will, but I also have the medics to handle the gory stuff!
The current period is obviously a period of great change for me and those close to me. Change can manifest in many different ways. I always liked the analogy of riding a bicycle where as you ride you constantly adjust. The constant adjustment is what keeps the bike in a straight line. This kind of change is snake like; a slow undulating transition. If you don't constantly adjust when riding a bike then you will carry on a straight line for a while but then the front wheel will start to wobble and you'll end up in a sticky heap on the floor. This kind of change is frog like. It appears to present itself in a quantum (just like a frog leaping) but in fact the energy has been accumulating over a period of time.
The moral is that if you do not go to change then it will come to you.
When change comes to you it can be difficult to deal with because it already has great momentum. I wrote the poem "The Spirit of Change" years ago to articulate this point. The poem was written on the night of a total eclipse of the full moon, an occasion which is viewed by many to be symbolic of great change. I was watching a football match on television when I had the central image of a stallion jumping through a wall and bricks flying everywhere. Football fans will remember the match because it was a hugely entertaining encounter between Liverpool and Newcastle (in 1996) which Liverpool won 4-3. Their victory effectively ended Kevin Keegan's attempt to win the Premiership with Newcastle.
When I wrote the poem I developed the image in my mind as if the horse had been frightened by a fire in the stable and had reared and kicked before bursting through the door and into the fields, galloping against the backdrop of a full moon.
If you find it difficult to read the text then click on it and it will appear in a larger window.
Bringing the cancer under control is my "The Horse Whisperer's" job. I have to keep myself happy and focused, to narrow the angles for the horse and bring it to heel. If I have to use some brute force then I will, but I also have the medics to handle the gory stuff!
Tomorrow's the big day
The scheduling of an endoscopic ultrasound is being delayed for a simple reason. That is because it is not worth doing one if there isn't going to be any major surgery.
Tomorrow the laparoscopy will be performed and the surgeon will know immediately whether I have secondary cancer. If he finds something then a biopsy will confirm the situation but, as I understand it, he will know pretty much straight away.
Either I am clear in the abdomen and we can deal with the already diagnosed tumour at the junction of the oesophagus and stomach or I have secondary cancer and there will not be an operation.
I don't know when I will learn of the surgeon's findings but it is the nature of this game with everything moving so quickly. Until this test is done I don't know whether the odds are stacked with me or against me. That is the plain truth of the situation.
Regardless of what the surgeon finds he is only discovering what is already there, so I will do my best to relax and hope for Lady Luck to shine on me once more.
Tomorrow the laparoscopy will be performed and the surgeon will know immediately whether I have secondary cancer. If he finds something then a biopsy will confirm the situation but, as I understand it, he will know pretty much straight away.
Either I am clear in the abdomen and we can deal with the already diagnosed tumour at the junction of the oesophagus and stomach or I have secondary cancer and there will not be an operation.
I don't know when I will learn of the surgeon's findings but it is the nature of this game with everything moving so quickly. Until this test is done I don't know whether the odds are stacked with me or against me. That is the plain truth of the situation.
Regardless of what the surgeon finds he is only discovering what is already there, so I will do my best to relax and hope for Lady Luck to shine on me once more.
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