Another rescheduled day. Getting to be a habit now. This one was my fault though so I can't complain.
Gemcitibane today and again I had the acid pain up my arm which can only be described as excruciating. I only had to weather this pain for about forty five minutes as opposed to the three hours or so on the 25th.On the plus side I got my AFP results from the end of cycle 2 and the bugga's have dropped to fifteen. Which is a bonus really. Cycle 3, this cycle is not yet reported and theoretically we should have seen the AFP drop to less than 8 which is the Christie Hospital normal for this tumour marker.
I go into cycle 4 this week, starting the sixteenth and ending the twenty third with potentially a disease in remission and using this cycle to polish things off. Bargain!
I will update this blog on a regular basis as this is much to the history of this disease that I want to get out of my head. Suffice to say, there are one or two Doctors who may want to take legal action against me when I have finished commenting on their skills as physicians here.
Wednesday, 14 May 2008
April 25th:cycle 3, day 1
Due to what can only be described as 'administrative issues' my proper sequence of chemo days was fudged beyond belief and I was delayed until the 25th for my 3rd cycle of chemo. Since then I have been wrapped around a greasy ball of pain in my gut and haven't had the inclination to update this blog.
This was a combined oxalyplatin/gemcitibane day again and I encountered one of the more unpleasant side effects of the infusion process. I had been warned that there could be some vein pain from these infusions, but nothing had prepared me for how severe they could be. From the first minute of the oxalyplatin infusion I felt like someone was feeding me acid through the drip. This got worse with the gemcitibane element of the infusion and peaked with the saline flush. Apparently, the solution is to apply a hot compress pack to the area, which was done and offered virtually no relief. So, all in all, this was not a good day for me.
This was a combined oxalyplatin/gemcitibane day again and I encountered one of the more unpleasant side effects of the infusion process. I had been warned that there could be some vein pain from these infusions, but nothing had prepared me for how severe they could be. From the first minute of the oxalyplatin infusion I felt like someone was feeding me acid through the drip. This got worse with the gemcitibane element of the infusion and peaked with the saline flush. Apparently, the solution is to apply a hot compress pack to the area, which was done and offered virtually no relief. So, all in all, this was not a good day for me.
Thursday, 3 April 2008
April 1st:Cycle 2, day 2
Gemcitibane day today, which is the easiest chemo day to cope with to be honest. Saying that, the bureaucracy of just getting in, getting bloods drawn, getting to see the consultant and then getting the chemo infused is more than a little frustrating. Gemcitibane is a 1 hour treatment if you include the fifteen minute saline solutions either side. The whole process took from 1pm to 7pm and that didn't include driving time to and from the hospital.
I don't know about other patients, but for me I just want to get in and get on with it. Anything else just seems to be waste of time. My marvellous NHS seems to run on a system that defies rhyme or reason, it simply does what it wants to. The people who work at the Chrisite hospital are marvelous, the environment is okay, the systems are just so slow they make you want to scream.
I had a good chat about this today with Dr Aziz and he was actually quite sympathetic to my cause. See, I knew that I was being fitted in to the system as I am on my fourth episode of teratoma which is unusual in itself and there are no clinics in existence to cope with me. Accordingly, I was attached to a breast cancer clinic as that could accommodate me for treatment. Unfortunately I couldn't accommodate it as I have been getting home some nights at 10pm and later which is no good when you have school aged children and no-one in the family who can look after them and feed them at tea time. The good Dr Aziz has agreed to move my clinic and treatment day to a Friday as I will start my treatment earlier in the day with a view to getting home at something closer to a reasonable time.
This seems like a petty detail really, especially when you are getting potentially life saving or life increasing treatments but, even cancer patients have lives too you know and we get frustrated just like everyone else when a few hours at the hospital turns into a day long test of nerves.
Just because you have a life threatening illness doesn't mean you don't have a life and it doesn't mean that you are so grateful for treatment that you accept being left to hang around a hospital for hours on end because that's the way it all works. I wonder if any of the people responsible for designing the admissions and treatment systems at the Christie hospital have actually ever had cancer? The designers probably think it all works swimmingly.
Maybe the next time I'm at lunch with Gordon Brown we'll have a chat about the NHS and the services it delivers.
I don't know about other patients, but for me I just want to get in and get on with it. Anything else just seems to be waste of time. My marvellous NHS seems to run on a system that defies rhyme or reason, it simply does what it wants to. The people who work at the Chrisite hospital are marvelous, the environment is okay, the systems are just so slow they make you want to scream.
I had a good chat about this today with Dr Aziz and he was actually quite sympathetic to my cause. See, I knew that I was being fitted in to the system as I am on my fourth episode of teratoma which is unusual in itself and there are no clinics in existence to cope with me. Accordingly, I was attached to a breast cancer clinic as that could accommodate me for treatment. Unfortunately I couldn't accommodate it as I have been getting home some nights at 10pm and later which is no good when you have school aged children and no-one in the family who can look after them and feed them at tea time. The good Dr Aziz has agreed to move my clinic and treatment day to a Friday as I will start my treatment earlier in the day with a view to getting home at something closer to a reasonable time.
This seems like a petty detail really, especially when you are getting potentially life saving or life increasing treatments but, even cancer patients have lives too you know and we get frustrated just like everyone else when a few hours at the hospital turns into a day long test of nerves.
Just because you have a life threatening illness doesn't mean you don't have a life and it doesn't mean that you are so grateful for treatment that you accept being left to hang around a hospital for hours on end because that's the way it all works. I wonder if any of the people responsible for designing the admissions and treatment systems at the Christie hospital have actually ever had cancer? The designers probably think it all works swimmingly.
Maybe the next time I'm at lunch with Gordon Brown we'll have a chat about the NHS and the services it delivers.
Friday, 28 March 2008
March 27th:Cycle 2, day 1
Frabjous joy, had my second oxalyplatin/Gemcitibane day today. Should have been on Tuesday of this week, but due to admission issues it was canceled and rescheduled for Thursday 27Th.
They gave my AFP result, which was drawn on Tuesday and followed 1 full cycle which had enjoyed two weeks of sitting in my system and making me feel less than good. Will I bitch about that? Hell no as the AFP has dropped from 210 to 79. So, bring the treatment on as Dr Welch's cytotoxic heavy artillery is doing its job. I may feel like I am in vomit hell, but my mind is doing cartwheels.
BARGAIN!
They gave my AFP result, which was drawn on Tuesday and followed 1 full cycle which had enjoyed two weeks of sitting in my system and making me feel less than good. Will I bitch about that? Hell no as the AFP has dropped from 210 to 79. So, bring the treatment on as Dr Welch's cytotoxic heavy artillery is doing its job. I may feel like I am in vomit hell, but my mind is doing cartwheels.
BARGAIN!
Wednesday, 19 March 2008
Just another day...
It's been over a week now since I had day two of my first chemo cycle and the anxiety begins to build. Is it working, is it worth continuing with the treatment, should I cut and run? Questions rattle around my brain like shrapnel from a bag of grenades.
I know there is no chance this treatment will have had any effect on the tumour markers yet. I know that, it's too soon. I know that the treatments are cumulative and it will take time for them to get a grip of whatever is happening inside me and slap it into submission, thereby buying me more time to live my life. I know this isn't a cure I am getting, it is a palliative treatment aimed at giving me more life. How much more life is anyone guess, but at least no-one has actually named an expiration date yet. So, unlike Philip K Dicks replicants from Bladerunner/Do androids dream of electric sheep, whilst I have an incept date for 1965 I don't have a shutdown date. I think I am grateful for that at least.
Anyway, I crumbled today and rang my consultant to find out what my latest AFP result is. I shouldn't have done it, I wouldn't have done it had I been thinking straight. All that shrapnel confused me for a moment and I picked up the phone. My AFP has risen to 210, from 190 over a seven day period. Damn!
Is that bad? No, it isn't, as the treatments aren't expected to strike to the heart of my rising AFP so quickly. But, you do foolishly hope don't you.
You have to sometimes.
I know there is no chance this treatment will have had any effect on the tumour markers yet. I know that, it's too soon. I know that the treatments are cumulative and it will take time for them to get a grip of whatever is happening inside me and slap it into submission, thereby buying me more time to live my life. I know this isn't a cure I am getting, it is a palliative treatment aimed at giving me more life. How much more life is anyone guess, but at least no-one has actually named an expiration date yet. So, unlike Philip K Dicks replicants from Bladerunner/Do androids dream of electric sheep, whilst I have an incept date for 1965 I don't have a shutdown date. I think I am grateful for that at least.
Anyway, I crumbled today and rang my consultant to find out what my latest AFP result is. I shouldn't have done it, I wouldn't have done it had I been thinking straight. All that shrapnel confused me for a moment and I picked up the phone. My AFP has risen to 210, from 190 over a seven day period. Damn!
Is that bad? No, it isn't, as the treatments aren't expected to strike to the heart of my rising AFP so quickly. But, you do foolishly hope don't you.
You have to sometimes.
Wednesday, 12 March 2008
August 30th 1995
It's been 14 days since I was involved in that road traffic accident and on this day I woke at 4am in the most excruciating pain I have ever experienced in my life. I feel like somebody has stuck a red hot knitting needle in through my left testicle and out through my left kidney. The pain is so bad I can barely breathe, let alone cry out.
I lay there for over two hours, Rachel asleep at my side, unable to move and slowly the pain subsides to a level where I can get out of bed and go find some painkillers.
I'm up now, the painkillers have kicked in and I may as well get myself ready for work. Tea for the wife, bottle for the baby, breakfast for Richard. The routine masks the pain almost as well as the six co-codamol I swallowed. Over breakfast I talk to Rachel about the pain and she suggests I ring our GP, Dr Singh. That doesn't elicit the response she expected. Normally she'd get an outright 'no' as I loathe Doctors with a passion. Doctors treat sick people and malingerers as far as I am concerned, I am and never have been either. I cycle 110 miles a week for fun, I walk everywhere and I eat well. I used to run for my Regiment in Iron man events, cross country and orienteering events and I don't even get a sniffle during a flu outbreak. I don't do sick.
But, this pain has well and truly frightened me so I agree.
Two days later sees me in the company of my GP at a practice I have been a registered patient of for twenty five years. My GP has never seen me once in all that time. He's a nice enough fellow, asks a few pertinent questions and nods sagaciously when I tell him of the car accident some two weeks prior.
'Can I take a look at your testicles' he asks.
'OK' says I.
Well, he looks, asks where the pain was worse and then proceeds to roll the left hand lad around in his hand. I do consider punching him out flat and leaving as he seems all too comfortable with the time he is taking to roll once small ball (no pun intended) of flesh around in his hand.
He instructs me to get dressed and goes to sit behind his desk. In his opinion he can find nothing wrong with the structure of the testicle, but he thinks I may have squashed it when I was involved in the car crash. So, he suggests that I go and see a Urology Consultant just to set our minds at rest. So he gives me an admission letter to my local Accident and Emergency Department with instructions to go there once I have left his surgery. A bit sudden I think, but he tells me no to worry, it's just procedural.
Okay.
Upon arrival at A&E, I hand in my letter, answer a few questions and take a seat in the waiting room. The board on the wall says that current waiting times are approximately two hours so I figure I should just settle down and wait then.
Not five minutes later, my name is called and a severe looking woman in a nurses uniform escorts me into the strip lit bowels of the hospital. I am shown a stark cubicle with a basket and a washed out green gown, told to strip, don the gown and then go and sit in waiting area 'B'.
Okay.
Clutching my possessions to my chest as Harry Potter would his precious wand I sit nervously waiting in area 'B'. I have figured out that I can probably snap the neck of the receptionist with ease, knock out the few staff in the area and make good my escape in less that fifteen seconds if I set my mind to it. The plan is starting to move from the ludicrous to the down right attractive when my name is called again.
The young slip of a gel who summoned me introduces herself as a Doctor... even though she only looks sixteen years old, she wants me to believe she is a Doctor.
Okay.
I am taken to another anonymous, stark cubicle, with a bed in it this time. Told to leave my clothes on the lone chair in the corner, get on the bed and lay on my side. I am asked to describe my symptoms and the circumstances that led to them. I explain about the crash some two weeks ago, the current symptoms and my GP insisting I come to the hospital.
'A car crash' she asks. 'I presume you are seeking compensation for injuries suffered as a result of the accident then'.
'I've got myself a solicitor, yes'. I reply.
'I presume you'll wish to add this phantom pain to the list of injuries then'? She snaps.
'Phantom pain'? I query.
'Breathe in for me'. She asks.
She sticks her finger up my arse. None too gently either.
I manage to gasp and inform her that my balls are on the outside and at the front. She mutters something to the effect that her finger currently residing in my arse is merely a procedural thing.
Okay.
It's at this point that the curtain to our cubicle and my world of pain and misery is swished to one side and Mr M M Gammall enters from stage left.
From a face filled with too many white teeth and eyes that twinkled a tad too much for their own good rumbled a voice that commanded respect and judging by the look on the face of the young lady Doctor, fear too. Within a few mere seconds, he had established the cause of my appearance in his A&E department, caught up on the investigations so far, got me to lie on my back and with a look of thoughtful repose on his face he had my testicles rolling around in his hands before I knew what was happening.
Okay, but he has that lad on the left rolling around far too much for my liking.
'I think' he says in that quite, comforting voice that Doctors have, 'That you have crushed your left testicle in that car crash as I can feel a small lump which I believe to be a haematoma'
'A what'? I ask.
'A small blood clot'. He soothes.
He summons the young lady over and asks if I mind in she just takes a moment to roll my testicles around in her hands.
He needs to ask?
He guides her slowly around the testicle (please God don't let me get an erection) and directs her around to the blood clot. She nods as she makes small movements of her hands to locate its exact location (I promise I'll be good for the rest of my life God).
Satisfied, she leaves my fondled lads alone as Gammall once again takes over.
'I don't believe this to be anything sinister, but I'd like to see you in my urology clinic next week. I'll get you an appointment now, you can go home and I'll see you then. Don't worry Mr Traynor, I don't think it is anything to be concerned about, I just want to be certain everything is as it should be'.
Okay.
I'll see you in a week then.
I'm off home.
I lay there for over two hours, Rachel asleep at my side, unable to move and slowly the pain subsides to a level where I can get out of bed and go find some painkillers.
I'm up now, the painkillers have kicked in and I may as well get myself ready for work. Tea for the wife, bottle for the baby, breakfast for Richard. The routine masks the pain almost as well as the six co-codamol I swallowed. Over breakfast I talk to Rachel about the pain and she suggests I ring our GP, Dr Singh. That doesn't elicit the response she expected. Normally she'd get an outright 'no' as I loathe Doctors with a passion. Doctors treat sick people and malingerers as far as I am concerned, I am and never have been either. I cycle 110 miles a week for fun, I walk everywhere and I eat well. I used to run for my Regiment in Iron man events, cross country and orienteering events and I don't even get a sniffle during a flu outbreak. I don't do sick.
But, this pain has well and truly frightened me so I agree.
Two days later sees me in the company of my GP at a practice I have been a registered patient of for twenty five years. My GP has never seen me once in all that time. He's a nice enough fellow, asks a few pertinent questions and nods sagaciously when I tell him of the car accident some two weeks prior.
'Can I take a look at your testicles' he asks.
'OK' says I.
Well, he looks, asks where the pain was worse and then proceeds to roll the left hand lad around in his hand. I do consider punching him out flat and leaving as he seems all too comfortable with the time he is taking to roll once small ball (no pun intended) of flesh around in his hand.
He instructs me to get dressed and goes to sit behind his desk. In his opinion he can find nothing wrong with the structure of the testicle, but he thinks I may have squashed it when I was involved in the car crash. So, he suggests that I go and see a Urology Consultant just to set our minds at rest. So he gives me an admission letter to my local Accident and Emergency Department with instructions to go there once I have left his surgery. A bit sudden I think, but he tells me no to worry, it's just procedural.
Okay.
Upon arrival at A&E, I hand in my letter, answer a few questions and take a seat in the waiting room. The board on the wall says that current waiting times are approximately two hours so I figure I should just settle down and wait then.
Not five minutes later, my name is called and a severe looking woman in a nurses uniform escorts me into the strip lit bowels of the hospital. I am shown a stark cubicle with a basket and a washed out green gown, told to strip, don the gown and then go and sit in waiting area 'B'.
Okay.
Clutching my possessions to my chest as Harry Potter would his precious wand I sit nervously waiting in area 'B'. I have figured out that I can probably snap the neck of the receptionist with ease, knock out the few staff in the area and make good my escape in less that fifteen seconds if I set my mind to it. The plan is starting to move from the ludicrous to the down right attractive when my name is called again.
The young slip of a gel who summoned me introduces herself as a Doctor... even though she only looks sixteen years old, she wants me to believe she is a Doctor.
Okay.
I am taken to another anonymous, stark cubicle, with a bed in it this time. Told to leave my clothes on the lone chair in the corner, get on the bed and lay on my side. I am asked to describe my symptoms and the circumstances that led to them. I explain about the crash some two weeks ago, the current symptoms and my GP insisting I come to the hospital.
'A car crash' she asks. 'I presume you are seeking compensation for injuries suffered as a result of the accident then'.
'I've got myself a solicitor, yes'. I reply.
'I presume you'll wish to add this phantom pain to the list of injuries then'? She snaps.
'Phantom pain'? I query.
'Breathe in for me'. She asks.
She sticks her finger up my arse. None too gently either.
I manage to gasp and inform her that my balls are on the outside and at the front. She mutters something to the effect that her finger currently residing in my arse is merely a procedural thing.
Okay.
It's at this point that the curtain to our cubicle and my world of pain and misery is swished to one side and Mr M M Gammall enters from stage left.
From a face filled with too many white teeth and eyes that twinkled a tad too much for their own good rumbled a voice that commanded respect and judging by the look on the face of the young lady Doctor, fear too. Within a few mere seconds, he had established the cause of my appearance in his A&E department, caught up on the investigations so far, got me to lie on my back and with a look of thoughtful repose on his face he had my testicles rolling around in his hands before I knew what was happening.
Okay, but he has that lad on the left rolling around far too much for my liking.
'I think' he says in that quite, comforting voice that Doctors have, 'That you have crushed your left testicle in that car crash as I can feel a small lump which I believe to be a haematoma'
'A what'? I ask.
'A small blood clot'. He soothes.
He summons the young lady over and asks if I mind in she just takes a moment to roll my testicles around in her hands.
He needs to ask?
He guides her slowly around the testicle (please God don't let me get an erection) and directs her around to the blood clot. She nods as she makes small movements of her hands to locate its exact location (I promise I'll be good for the rest of my life God).
Satisfied, she leaves my fondled lads alone as Gammall once again takes over.
'I don't believe this to be anything sinister, but I'd like to see you in my urology clinic next week. I'll get you an appointment now, you can go home and I'll see you then. Don't worry Mr Traynor, I don't think it is anything to be concerned about, I just want to be certain everything is as it should be'.
Okay.
I'll see you in a week then.
I'm off home.
March 11th 2008:Cycle 1, day 2
Had my Gemcitibane cycle today, which is given in the absence of the oxalyplatin element to keep the cytotoxic pressure on the cancer. Blood works following the combined Gem/Oxy treatment last week (cycle 1, day 1) show that my blood has stayed fairly normal given the kicking my system has taken following the first Gem/Oxy infusion. Which is encouraging.
I must confess that I have had a lot of bone pain since he combined infusion, which I am told is only going to get worse as the cycles progress. I know this of old as I am on my fourth round of chemo in the last thirteen years now, so you kinda know what to expect. Doesn't mean I am looking forward to it though. Sometimes too much knowledge IS a bad thing.
Something I never picked up on, which I should have jumped on, was this. Bloods were drawn prior to this infusion today and reported to the Doctor prior to the infusion commencing. Okay, makes sense. What passed me by completely was a comment made about my AFP tumour marker. Apparently,since infusion 1 my AFP has dropped by ten points. How did I miss picking up on that one?
So, it appears the treatment may well be working according to Dr Welch's divine plan.
BARGAIN!
I don't really have a lot to say about this infusion really. It went off quite smoothly and in the last twenty four hours I haven't felt any worse than at any point in the last week. That's good I suppose.
I did complain of oral thrush from infection, dry skin, aching bones and piles at my consultation for which I was given tablets, creams, unguents and pineapple sized suppositories. I know they say the way to a mans heart is through his stomach, but is it true that the way to the rest of him is through his arse?
If you can answer that, drop me a line please.
I must confess that I have had a lot of bone pain since he combined infusion, which I am told is only going to get worse as the cycles progress. I know this of old as I am on my fourth round of chemo in the last thirteen years now, so you kinda know what to expect. Doesn't mean I am looking forward to it though. Sometimes too much knowledge IS a bad thing.
Something I never picked up on, which I should have jumped on, was this. Bloods were drawn prior to this infusion today and reported to the Doctor prior to the infusion commencing. Okay, makes sense. What passed me by completely was a comment made about my AFP tumour marker. Apparently,since infusion 1 my AFP has dropped by ten points. How did I miss picking up on that one?
So, it appears the treatment may well be working according to Dr Welch's divine plan.
BARGAIN!
I don't really have a lot to say about this infusion really. It went off quite smoothly and in the last twenty four hours I haven't felt any worse than at any point in the last week. That's good I suppose.
I did complain of oral thrush from infection, dry skin, aching bones and piles at my consultation for which I was given tablets, creams, unguents and pineapple sized suppositories. I know they say the way to a mans heart is through his stomach, but is it true that the way to the rest of him is through his arse?
If you can answer that, drop me a line please.
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