Tuesday, January 3, 2012
10. Treatment ? part 2
Friday 30th December 2011, 09:00 AM
1st Oncology consultation, Guy's Hospital, London
My first visit to Guy's & St Thomas' NHS Foundation Trust Home, ENT Dept. I don't get to meet Dr Teresa Guerrero-Urbano, the head of my Oncology team.
Jo and I Meet Dr. Mary Lei and after a review of my medical history and quick examination of both the missing tonsil area, and the lumps, she explains to me briefly ( at least an hour or more ) what to expect from the treatment, side effects short and long term etc. I sign the consent forms.
Dr. Lei has two medical students shadowing her, they both took turns peering down my throat and fondling my neck too, I rather enjoyed the neck fondling. I should have asked Jo and nurse Annabel if they wanted a go too.
Special Sauce
Dr Lei asked whether I wanted children ( not specifically with her, I don't think ), after Radio Therapy I shouldn't have any, or father any, the radiation screws up your "special sauce". I said NO ! and then dithered and said "no absolutely not". Then a funny thing happened, she asked again, and again two or three more times just to make sure the "Junk Bank" was here in the building and it was easy to arrange. It occurred to me later that perhaps i was being dense and selfish and what with Dr Mary Lei, Nurse Annabel, the two female medical students and Jo in the room I should of asked whether anyone else wanted a splash of "Stuart's Special Sauce, while it was still fresh and viable". If any one else is interested you need to get your order in now, before its too late.
The Dentist
Before Radio Therapy, I'll need 10 years worth of preventative dental work done. RT makes such significant changes to the jaw that "below the gum line" dentistry must only be performed by specialist RT qualified dentists, both Dr Lei and Mr Terry went to great lengths to drum this in. The Dental Dept. of Guy's is in the tower and covers over 6 floors. The dental X-Ray took 30 seconds and was ready for viewing as i left the booth. I'll be back there some time in the next two weeks...
MRSA Test
I had an MRSA test as part of the Tonsillectomy Pre-Op. assessment a couple of weeks ago, blood and swabs. Hospitals these days don't take chances with patients importing infections. I've now given blood 3 or 4 times, maybe even 5, and I still don't like it ( Psychosomatic ). Every time I have it's been completely painless, a couple of times even 'almost' sensation free. So this will have been my second MRSA Test in 3 weeks. As always the nurse was very sweet, but boy did she take her time this time, faffing & fumbling about ( "come on woman just get it over with !" ) The highlight of this instance was when she asked "was Jo was my Mum ?", I laughed so much I nearly gave an involuntary urine sample too. "your not my 'real' Mum". Just to be clear ( & fair ) it was not because Jo looks 'old', It was because I look so youthful, boyish and vigorous etc. etc. etc.
Next, Chemo Therapy
Six weeks worth. Day one, 5 or 6 hours, 4 hours on IV hydration followed by 1 hour of Chemo.
Then 4 days of 24 hour per day of Chemo via a medication pump, lugged around in it's own little bag. Day 5 back to hospital to have the IV pump disconnected. 2 weeks off and then start again. 6 weeks in all. 1st session, probably either the 16th or the 23rd January i.e. two or three weeks time.
Then, Radio Therapy
One hour a day, 5 days a week, 30 days of treatment. 6 weeks start to finish. The list of RT side effects both short and long term is about over two dozen items long, overwhelming, daunting and grim. Even just the idea of having a neck so sore that I wont be able to eat and have to have a feeding tube put through my belly and into my stomach is bad enough on its own. Before all this there will also be a MRI Scan and a fitting at St Thomas' for a 'bespoke plastic mesh head cage', the eradication map is so specific that any movement will throw it off, even a change in body weight will change the body shape enough to throw it off.
RT is a huge worry and I'm not sure how I feel about it...
Edited by Jo W, with thanks
Monday, January 2, 2012
9. Treatment ? part 1
Thursday 29th December 2011, 11:00 AM
'back' to the Royal 'again' for the post op consultation
I see Mr Terry 'again' Jo comes straight in with me this time, "yes the left tonsil was the primary and now it is gone". Next step treatment, which will be handed over to Dr. Guerrero-Urbano and her team at Guy's & St Thomas' Hospital London. Mr Terry explains briefly ( at least half an hour ) about Chemo & Radio therapy, diet, dental work etc.
Our conversation about diet is, 'strained'. He's not overly impressed with the whole 100% Organic, Vegan / Vegetarian, near Macro Biotic 'thing', "just eat normally" he says, I think "I have been for almost 50 years, and now I have cancer". Even after being told that I'm not being held ransom to it and that over the Christmas & New Year period I eat meat, and cheese, and bread, and wine, and cake etc. His concern is weight loss, it's effects on recovery and it's impact on RT exposure mapping. So I get to keep my Panda Bear figure for a little longer.
We discuss "mental attitude" he tells me that one apparently significant factor in "expectancy & recovery" is attitude. Consultants deliberately avoid using the word "cancer", apparently far too many people are told they have cancer, give up and die of cancer. Not me. I tell him about Homer Simpson's 5 stages, see Chapter 3. I tell him that now I'm at the stage that...
"if one of the gods wants me dead then they can come and get me themselves, the bunch of lazy, little, fucking cowards"
He smiles, he likes my positive attitude.
My first appointment at Guys is for 9:00 AM 'the next day', no hanging around I have Oropharyngeal Carcinoma ( Stage T2N2C ).
Edited by Jo W, with thanks
'back' to the Royal 'again' for the post op consultation
I see Mr Terry 'again' Jo comes straight in with me this time, "yes the left tonsil was the primary and now it is gone". Next step treatment, which will be handed over to Dr. Guerrero-Urbano and her team at Guy's & St Thomas' Hospital London. Mr Terry explains briefly ( at least half an hour ) about Chemo & Radio therapy, diet, dental work etc.
Our conversation about diet is, 'strained'. He's not overly impressed with the whole 100% Organic, Vegan / Vegetarian, near Macro Biotic 'thing', "just eat normally" he says, I think "I have been for almost 50 years, and now I have cancer". Even after being told that I'm not being held ransom to it and that over the Christmas & New Year period I eat meat, and cheese, and bread, and wine, and cake etc. His concern is weight loss, it's effects on recovery and it's impact on RT exposure mapping. So I get to keep my Panda Bear figure for a little longer.
We discuss "mental attitude" he tells me that one apparently significant factor in "expectancy & recovery" is attitude. Consultants deliberately avoid using the word "cancer", apparently far too many people are told they have cancer, give up and die of cancer. Not me. I tell him about Homer Simpson's 5 stages, see Chapter 3. I tell him that now I'm at the stage that...
"if one of the gods wants me dead then they can come and get me themselves, the bunch of lazy, little, fucking cowards"
He smiles, he likes my positive attitude.
My first appointment at Guys is for 9:00 AM 'the next day', no hanging around I have Oropharyngeal Carcinoma ( Stage T2N2C ).
Edited by Jo W, with thanks
8. How do I feel ?
Fine, bewildered, overwhelmed, trepidatious, incredulous and really fucking pissed off.
Physically I feel fine.
There is no pain or discomfort and apart from the larger of the two remaining tumors (right neck) no real visible symptoms at all. I say no discomfort, but due to the swelling the on the right side I am sometimes aware of a soft, dull, ache, but only very barely and not often.
There was some soreness at first with the right tumor as it had caused the Parotid Gland to become infected but the antibiotics took care of that weeks ago.
Psychologically, I'm all over the place.
My emotions range through feeling: bewildered, overwhelmed, trepidatious, incredulous, daunted, angry, morbid & morose, disappointed... I could go on and on but you get the idea.
A few times I have even cried.
First was when Jo and I returned from getting the biopsy results, that was just so overwhelming. I phoned a friend and colleague 'Clive Shaw' to seek his advice about posting this blog, we laughed and chatted and joked around, he was very help full, when we had finished our call I hung up, turned around and Jo was red eyed, puffy faced and wet cheeked, and that made me cry too. Once late night shopping in the supermarket, on my own and feeling sorry for my self. And one listening to "You can be special too" by Evil Nine. I welled up when I phoned my brother Malcolm to tell him. And a day or two ago I was searching for images of Cisplatin Pumps ( more about that later ) and found a picture of a nine year old boy hooked up to one, and the realization that there are people in far worse condition than me, and with far less experience to cope with it, but who still do, and that made feel ashamed of my self, and that made me cry too.
Peter Cottington the Production Director at Coley Poeter Bell, who has been a friend and colleague for at least 15, if not then 20 years asked "if i can help in anyway let me know" my reply was that "at the moment I'm just trying to be a brave little soldier", so brave little soldier it is.
Now mostly what I feel is...
"if one of the gods wants me dead then they can come and get me themselves, the bunch of lazy, little, fucking cowards" Stuart Flood
Physically I feel fine.
There is no pain or discomfort and apart from the larger of the two remaining tumors (right neck) no real visible symptoms at all. I say no discomfort, but due to the swelling the on the right side I am sometimes aware of a soft, dull, ache, but only very barely and not often.
There was some soreness at first with the right tumor as it had caused the Parotid Gland to become infected but the antibiotics took care of that weeks ago.
Psychologically, I'm all over the place.
My emotions range through feeling: bewildered, overwhelmed, trepidatious, incredulous, daunted, angry, morbid & morose, disappointed... I could go on and on but you get the idea.
What did I do to deserve this ?
I don't smoke, I don't drink excessively, I don't sun bathe, I have been a recreational drug user in the past, but I gave all that up years ago, so why me ? see Chapter 4.A few times I have even cried.
First was when Jo and I returned from getting the biopsy results, that was just so overwhelming. I phoned a friend and colleague 'Clive Shaw' to seek his advice about posting this blog, we laughed and chatted and joked around, he was very help full, when we had finished our call I hung up, turned around and Jo was red eyed, puffy faced and wet cheeked, and that made me cry too. Once late night shopping in the supermarket, on my own and feeling sorry for my self. And one listening to "You can be special too" by Evil Nine. I welled up when I phoned my brother Malcolm to tell him. And a day or two ago I was searching for images of Cisplatin Pumps ( more about that later ) and found a picture of a nine year old boy hooked up to one, and the realization that there are people in far worse condition than me, and with far less experience to cope with it, but who still do, and that made feel ashamed of my self, and that made me cry too.
Peter Cottington the Production Director at Coley Poeter Bell, who has been a friend and colleague for at least 15, if not then 20 years asked "if i can help in anyway let me know" my reply was that "at the moment I'm just trying to be a brave little soldier", so brave little soldier it is.
Now mostly what I feel is...
"if one of the gods wants me dead then they can come and get me themselves, the bunch of lazy, little, fucking cowards" Stuart Flood
This is my war face, this is how i feel..
 |
| Takashi Murakami |
 |
| Takashi Murakami |
And grateful.
Too all the staff, in all the hospitals that I have come into contact with so far, they have all been quite lovely. And especially to Jo Widdowson ( the toy hider ), who has made every aspect of all this so much more bearable, just from being there to hold my hand when I needed it ( which has been quite often i.e. all the time ) She has looked up the information that I could not face, and allayed my fears when I have been ignorant. She has even embraced the bulk of the cancer hostile diet too. Bless her...
Edited by Jo W, with thanks
Edited by Jo W, with thanks
7. Diagnostic Surgery
Wednesday 14th December 2011, 07:45 AM
Alan Cummings Day Surgery Unit, the Royal
Scheduled for the 21st December, like everything else so far I receive a call from admissions office at the Royal Outpatients Day Surgery to offer me an earlier appointment, 14th December ( i.e. two days time ), "Gulp !"
Jo and I arrive at 7:45 AM and said our 'goodbyes', she'd be back to collect me some time around 4:00 PM. I unpack my day bag, there's a stow away. Jo had unbeknownst to me secreted into my holdall a small, soft, green corduroy crocodile, 'to cheer me up', it does ( it also makes me cry, so thanks for that Jo ). There's an hour or two of waiting around. I change into the hospital gown, I read my book, I rest my eyes, I play with my crocodile, I go to the loo ( 6 times ) nervous much ? yes !
Mr Terry's assistant nurse Jo ( different Jo same name ) comes to see me, we chat for half an hour. I read and sign the consent forms. I'm scheduled for the following procedures:
Examination of the Post Nasal Space
Examination of the Oral Cavity
Examination of the Palate
Examination of the Tongue Base
Pharyngoscopy
Biopsy
Tonsillectomy
Where is the 3rd mystery cancer ?
Mr Terry arrives, we chat, he's seen the scans, my left tonsil 'is' the primary site of the cancer ( Tonsillar Squamous Carcinoma ) it's days are numbered, its coming out today. He's perfectly charming ( I wonder if nurse Jo has said something to him about he previous "bed side manner" ? ).
Not sure when I came out of surgery, some time around midday, maybe 1:00-ish, maybe later. Jo's coming back to collect me at 3:00 PM, however, apparently I had a "small" seizure or fit of some kind on the operating table, so they keep me in for an extra hour or two, for observation, just in case. They wont let me out until I have proven that I can eat something, 3 McVitie's Digestive Biscuits. I eat most of one, and pocket the rest, I eat those a couple of days later.
Adult Tonsillectomy, just don't ask...
I can expect the discomfort to 'increase' for the first week before it starts to abate, NO KIDDING !
The most distressing post op symptom is that, as the rotten Tonsil is "hacked out" Mr Terry's words not mine, the site is left some what "ragged" a sensation akin to having small, wet, dead leaves stuck to the back of the throat, that do occasionally ( and far too often for my liking ) flop around, touch the back of the tongue or sides of the throat, causing a gagging reflex, and at this stage I could really do without coughing and hemorrhaging.
My diet was now Paracetamol & Ibuprofen, cold Coconut milk or cold Coconut water, and fruit smoothies. When I did get back onto solids "everything" is chewed, and chewed, and chewed. By the 25th December I was able to eat a full proper Christmas dinner, Yum !
Only had the Tonsillectomy in the end, none of the other procedures were required.
So what next ?
Edited by Jo W, with thanks
Alan Cummings Day Surgery Unit, the Royal
Scheduled for the 21st December, like everything else so far I receive a call from admissions office at the Royal Outpatients Day Surgery to offer me an earlier appointment, 14th December ( i.e. two days time ), "Gulp !"
Jo and I arrive at 7:45 AM and said our 'goodbyes', she'd be back to collect me some time around 4:00 PM. I unpack my day bag, there's a stow away. Jo had unbeknownst to me secreted into my holdall a small, soft, green corduroy crocodile, 'to cheer me up', it does ( it also makes me cry, so thanks for that Jo ). There's an hour or two of waiting around. I change into the hospital gown, I read my book, I rest my eyes, I play with my crocodile, I go to the loo ( 6 times ) nervous much ? yes !
 |
| The stow away (left) and friend |
Mr Terry's assistant nurse Jo ( different Jo same name ) comes to see me, we chat for half an hour. I read and sign the consent forms. I'm scheduled for the following procedures:
Examination of the Post Nasal Space
Examination of the Oral Cavity
Examination of the Palate
Examination of the Tongue Base
Pharyngoscopy
Biopsy
Tonsillectomy
Where is the 3rd mystery cancer ?
Mr Terry arrives, we chat, he's seen the scans, my left tonsil 'is' the primary site of the cancer ( Tonsillar Squamous Carcinoma ) it's days are numbered, its coming out today. He's perfectly charming ( I wonder if nurse Jo has said something to him about he previous "bed side manner" ? ).
Not sure when I came out of surgery, some time around midday, maybe 1:00-ish, maybe later. Jo's coming back to collect me at 3:00 PM, however, apparently I had a "small" seizure or fit of some kind on the operating table, so they keep me in for an extra hour or two, for observation, just in case. They wont let me out until I have proven that I can eat something, 3 McVitie's Digestive Biscuits. I eat most of one, and pocket the rest, I eat those a couple of days later.
Adult Tonsillectomy, just don't ask...
I can expect the discomfort to 'increase' for the first week before it starts to abate, NO KIDDING !
The most distressing post op symptom is that, as the rotten Tonsil is "hacked out" Mr Terry's words not mine, the site is left some what "ragged" a sensation akin to having small, wet, dead leaves stuck to the back of the throat, that do occasionally ( and far too often for my liking ) flop around, touch the back of the tongue or sides of the throat, causing a gagging reflex, and at this stage I could really do without coughing and hemorrhaging.
My diet was now Paracetamol & Ibuprofen, cold Coconut milk or cold Coconut water, and fruit smoothies. When I did get back onto solids "everything" is chewed, and chewed, and chewed. By the 25th December I was able to eat a full proper Christmas dinner, Yum !
Only had the Tonsillectomy in the end, none of the other procedures were required.
So what next ?
Edited by Jo W, with thanks
6. PET Scan
Thursday 8th December 2011, 09:15 AM
This time, St Thomas' Hospital London
This time, St Thomas' Hospital London
My appointment for the exploratory/diagnostic surgery ( to look for the mystery 3rd site of the cancer ) arrived before the appointment for the PET scan. I phoned radiology at either Guys or The Royal I can't remember which, explained the situation and a day or two later had an appointment for a day or two later than that. Again everything happens quite quickly.
The PET 'bunker' is deep in the basement of St Thomas' Hospital, everyone was very friendly and sweet ( everyone, everywhere has been so far ). The PET image unlike the 3D still images taken by CT are of the body "in function" they take half an hour each. Like CT and some X-Rays they also require a marker dye to be introduced into the blood stream. However with PET the marker is "radio active". Introduced via IV it takes less than a minute to administer and is totally sensation free.
 |
| Not the 'actual' one I was in but very similar |
Its worth noting that the radio active marker is kept, transported and delivered from a heavy, sealed, lead container, wheeled around on it's own little trolly ( at arms length ). I couldn't help wondering what my super powers might be after all this.
It takes at least an hour for the maker to work its way through the system, so I got to have nap in a quiet, darkened cubicle prior to the hour or so of actual scanning. Jo wanted to stay with me ( bless her ) but the nurse said she couldn't "as I was too radio active" and then she left herself. This made Jo cry, we said our goodbyes, Jo would come back for me in a couple of hours time and off she went too. Seeing Jo cry made me cry too, not my first time by the way, I probably not the last either. Once you are dosed with the radio active marker no one stands too close to you, it's 'harmless' to an individual but if you are working with it all day they like to be on the safe side, only just slightly reassuring...
Imagine my disappointment to discover that having a PET Scan did not involve being gently frottaged with soft little kittens. They really should make that clear from the outset.
Imagine my disappointment to discover that having a PET Scan did not involve being gently frottaged with soft little kittens. They really should make that clear from the outset.
 |
| Not fair why does he get a kitten and I don't ? |
The only hard part about having the PET scan ( apart from seeing Jo cry ) was having to keep my arms above my head for half an hour. Why arms up ? Because, one of the scans is to look through the upper chest and as the beam enters through the side of the body the upper arm would be in the way.
So, so far...
Blood Test
Ultrasound Scan
Biopsy
CT Scan
Pet Scan
Next up, first surgery...
Edited by Jo W, with thanks
Edited by Jo W, with thanks
Sunday, January 1, 2012
5. CT Scan
Tuesday 6th December 2011, 12:15 PM
Back to the Royal for a CT Scan...
...actually two, arms up, arms down, easy in, easy out.
Back to the Royal for a CT Scan...
...actually two, arms up, arms down, easy in, easy out.
The whole process only takes five minutes each scan, the only unpleasant part is the IV introduced marker, not that the IV hurts in any way, but as the dye is released into the blood stream there is a sensation of warmth that washes up through the limb, into the shoulder and neck, also a distinct metallic taste in the mouth. Both completely bearable but still a tad off-putting.
I can't remember the exact dates but suffice is to say although the CT was booked for a certain time and day, a day or two after having received the appointment letter ( your scan is in two weeks time ) I received a phone call from the Radiology Dept. offering me an earlier appointment "tomorrow if you are available ?", "yes I am". The sooner the better.
Everything stops for cancer treatment.
Edited by Jo W, with thanks
Edited by Jo W, with thanks
4. What to do now ?
Bugger all you can do once you have cancer, or is there ?
There seem to be 4 main factors that in varying amounts and combinations contribute to getting cancer:
1. Luck, just bad luck to get it, or good luck not to.
2. A genetic predisposition.
3. Life style, do you smoke, do you drink heavily etc. ?
4. Diet, is your diet cancer friendly or cancer unfriendly ?
I am definitely unlucky ( I have cancer ). I don't smoke, or drink ( too ) heavily. But ! my diet was definitely extremely cancer friendly. That is to say it was rich in highly acidic foods, meats, sugars, dairy, processed foods, breads & pastries, alcohol etc. i.e. a fairly standard western european/anglo american diet. The type of diet that has become the norm over that last 50 years, which is coincidentally exactly that same time frame that has seen a proliferation of cancers to epidemic proportions. Go figure.
So diet is the only thing that is easy 'easy-ish' to change, I will make my body as much of a hostile environment for cancer as I possibly can. This means 100% organic foods, Vegan / vegetarian, near 100% macrobiotic, alkaline biased, and heavily vitamin & mineral supplemented.
And if you were wondering NO ! the cancer hostile diet is absolutely nowhere near as fun as it sounds.
However I will say this, after having eaten 100% organic fruit & veg I will never go back to buying non organic produce again. Both Sainsbury's and Tesco's have fairly reasonable selections of organic fruits & veg. Waitrose however have such a poor selection it's not worth them having any at all, if there's not enough variety to prepare a whole meal then there no point in even trying.
Contrary to popular belief ( mine included ) all 3 proprietors of my local health food shops have not been 'lentil munching hippies' they have all been extremely friendly and helpful, and have offered a lot of very useful and insightful advice on everything from food & nutrition to to preventative & curative remedies.
I have also taken to a Sodium Bicarbonate regime, in the hope that by pushing my gross body pH values as far to the Alkaline as I can that this may actually retard or even reduce, possibly even kill the existing cancers and tumors. It's possible that this is just 'new age, hippy, mumbo-jumbo' but it can't do any harm, and it is me taking an active roll in my own treatment at the earliest possible opportunity. Also some of the anecdotal evidence is very encouraging.
I started with a dose of one quarter of a teaspoon of Bicarbonate of Soda mixed with half a teaspoon of Maple syrup 2, 3 and 4 times a day. I now take 1 teaspoon of Bicarbonate of Soda, 2 - 3 teaspoons of maple syrup dissolved in half a cup of warm water 3 times a day. It doesn't taste great so I always have a glass of water chaser. Not tap water, I wont drink or cook with tap water any more, I have been for almost 50 years, it has chlorine and fluoride in it, and now I have cancer.
Any effect ? I don't know. But at least I'm doing something. Also the smaller of the two tumors, the one that is on the left side, high and just below the jaw doesn't seem to have gotten any bigger.
Over Christmas and New Year I said to Jo "screw the diet" and let's have meat, and cheese, and wine, and Gin. We did, it was bloody delicious, and all the veg & fruit, and nuts, and meat, was 100% organic, even the bread I think. Yum, Yum, Yum.
Edited by Jo W, with thanks
There seem to be 4 main factors that in varying amounts and combinations contribute to getting cancer:
1. Luck, just bad luck to get it, or good luck not to.
2. A genetic predisposition.
3. Life style, do you smoke, do you drink heavily etc. ?
4. Diet, is your diet cancer friendly or cancer unfriendly ?
I am definitely unlucky ( I have cancer ). I don't smoke, or drink ( too ) heavily. But ! my diet was definitely extremely cancer friendly. That is to say it was rich in highly acidic foods, meats, sugars, dairy, processed foods, breads & pastries, alcohol etc. i.e. a fairly standard western european/anglo american diet. The type of diet that has become the norm over that last 50 years, which is coincidentally exactly that same time frame that has seen a proliferation of cancers to epidemic proportions. Go figure.
So diet is the only thing that is easy 'easy-ish' to change, I will make my body as much of a hostile environment for cancer as I possibly can. This means 100% organic foods, Vegan / vegetarian, near 100% macrobiotic, alkaline biased, and heavily vitamin & mineral supplemented.
And if you were wondering NO ! the cancer hostile diet is absolutely nowhere near as fun as it sounds.
However I will say this, after having eaten 100% organic fruit & veg I will never go back to buying non organic produce again. Both Sainsbury's and Tesco's have fairly reasonable selections of organic fruits & veg. Waitrose however have such a poor selection it's not worth them having any at all, if there's not enough variety to prepare a whole meal then there no point in even trying.
Contrary to popular belief ( mine included ) all 3 proprietors of my local health food shops have not been 'lentil munching hippies' they have all been extremely friendly and helpful, and have offered a lot of very useful and insightful advice on everything from food & nutrition to to preventative & curative remedies.
I have also taken to a Sodium Bicarbonate regime, in the hope that by pushing my gross body pH values as far to the Alkaline as I can that this may actually retard or even reduce, possibly even kill the existing cancers and tumors. It's possible that this is just 'new age, hippy, mumbo-jumbo' but it can't do any harm, and it is me taking an active roll in my own treatment at the earliest possible opportunity. Also some of the anecdotal evidence is very encouraging.
I started with a dose of one quarter of a teaspoon of Bicarbonate of Soda mixed with half a teaspoon of Maple syrup 2, 3 and 4 times a day. I now take 1 teaspoon of Bicarbonate of Soda, 2 - 3 teaspoons of maple syrup dissolved in half a cup of warm water 3 times a day. It doesn't taste great so I always have a glass of water chaser. Not tap water, I wont drink or cook with tap water any more, I have been for almost 50 years, it has chlorine and fluoride in it, and now I have cancer.
Any effect ? I don't know. But at least I'm doing something. Also the smaller of the two tumors, the one that is on the left side, high and just below the jaw doesn't seem to have gotten any bigger.
Over Christmas and New Year I said to Jo "screw the diet" and let's have meat, and cheese, and wine, and Gin. We did, it was bloody delicious, and all the veg & fruit, and nuts, and meat, was 100% organic, even the bread I think. Yum, Yum, Yum.
Edited by Jo W, with thanks
3. Results
Monday 28th November 2011, 03:15 PM
Bad News Day 'or'
Things are not looking good for our hero...
Bad News Day 'or'
Things are not looking good for our hero...
Jo and I arrived at the hospital for an 11:00 AM appointment to see Mr Terry, my consultant at the ENT. Dept, of Princess Royal Hospital, Farnborough and dead on 11:00 AM the nurse called my name. As the nurse & I walked to the consulting room she asked whether Jo was my wife or my girlfriend ? I reluctantly admitted she is the latter ( Ed. by Jo "Gee, thanks!" ), stepped into Mr Terry's office and his 1st words were...
"Are you here alone?"
No, I'm here with my girlfriend.
"Well, let's get her in here too",
and the first thought that went through my head was Uh-Oh, this can't be good.
We all sat down. Jo and Mr Terry introduced themselves to each other. He leant forward, looked me straight in the eye and said...
"We've got your results. I'm afraid it's bad news."
OK, how bad?
"Very bad".
Very bad?
"Yes, very bad".
OK. There are varying degrees of 'very bad': Very bad; very-very bad; really very bad indeed; or as really very bad as very bad could ever possibly get.
"At the moment just very bad".
But it is possible that this could be as very bad as it could ever possibly get?
"Yes, but at the moment just very bad".
So then the three of us had a discussion, and by 'discussion' I mean that Jo & I sat there while Mr Terry spelled out what would be happening over the next few weeks. i.e. CT Scan, PET scan, diagnostic surgery etc. He asked many times "Did we have any questions?", "Did we have any more questions?". He took great pains to make it clear that there would be a significant amount of support for me including home help, counseling, specialist Head & Neck Team ( one of the few local authorities in the Country to have a dedicated Head & Neck team ), Macmillan nursing, etc, and that all of my test results would be assessed by the 28 person review board based at Guys & St Thomas's prior to treatment.
In all this time he only used the word cancer once ( just slipping it into the middle of one sentence, almost unnoticed ), and the word tumor only twice. They just don't like using the 'c' word.
One thing that he also pointed out was, that "as the two tumors are bilateral ( i.e. either side of my body ) but are asymmetric ( i.e. in slightly different locations ) and different in size that there was almost certainly an unknown 'third' that would be the 'primary' and that would need to be tracked down and dealt with too. This would likely to be in the upper pallet, or sinuses, or under the tongue, or the tonsils etc.
He made a point of telling us not to look it up on the internet ( "It won't do you any good" ) and not to bother talking to my GP about it ( "He won't know anything about it, and we'll send him copies of all the paperwork in due time anyway" ).
He made a point of telling us not to look it up on the internet ( "It won't do you any good" ) and not to bother talking to my GP about it ( "He won't know anything about it, and we'll send him copies of all the paperwork in due time anyway" ).
And that was that.
The consultation was 'apparently' over. Mr Terry turned away and in hushed tones he started whispering into his dictaphone. No goodbye, no pat on the shoulder, no "Don't worry, We'll look after you", nothing. Jo and I stood up, looked at each other, shrugged and left. Back out in the car park I had to ask Jo...
I do actually have cancer don't I ?"Yes, he said it was definitely 'not' benign."
So, I have cancer. ( Tonsillar Squamous Carcinoma )
Edited by Jo W, with thanks
2. Biopsy
I did not enjoy this, it was not fun, I don't want to do this again.
The first thing to say about the biopsy was how very sweet both the doctor and nurse were during the whole procedure. The doctor ( Andrew or Anthony Thomas, I can't quite remember ) was quite chatty, constantly reassuring and persistently apologetic for the obvious discomfort I was in. The nurse was very sweet and very tender towards me, also a little cheeky and playful. She asked me if I would like to have small or large wound dressings - "the large ones get you more sympathy".
They performed two types of biopsies, both conducted under local anaesthetic and with the aid of Ultrasound imaging, and on both sides of my neck.
The Doc had a good old look in my neck first with the scanner, then 2 or 3 jabs with the anaesthetic needle, which 'does' feel like being stuck in the neck with a sharp needle a few times. Then in for the F.N.B. ( Fine Needle Biopsy ). I don't think 'fine' refers to the 'actual' size of the needle. I'm sure it is a comparison i.e. a needle that is say 'finer' than plumbing pipe.
As a sample of cells are required it is necessary to 'swish' the needle about in the neck. You can feel it happening. I didn't like that at all. I was quite squirmy and from time to time I whispered out a little "meep" noise, all the time critically aware that there was a needle in my neck, right next to my carotid artery.
He performed this procedure twice, continuously saying "sorry, sorry" and with the nurse stroking and patting my arm to 'soothe' me, bless her, and him.
Next, the Core Biopsy. This sucked, really-really sucked. A Core Biopsy needle is bigger than a F.N.B. needle, and is inserted through a small incision. It is plunged into the tissue and with a loud 'Click!' a "core" of meat is snipped off with it's small blade. The difficulty comes from that fact that glands have tough outer layers, almost completely impervious to needles, particularly biopsy needles. Imagine chasing the last oily olive around the plate armed with only a blunt cocktail stick on which to impale it... same thing.
Both types of biopsy are performed with the aid of the scanner to pinpoint exactly where to sample, and to avoid sensitive areas like the arteries. The trick seems to be to trap the gland using both the US wand and the fingers, and pin it against the wind pipe and then 'jab' the needle into the gland ( at one point I thought he was going to get his foot up there on my throat to pin the bugger down, like Ahab harpooning a miniature whale ). He was so pleased to finally get the needle in "got you you slippery little bugger" I thought he might just stab it a few more times for good luck. There is a loud "click" and its all over.
Well not quite all over... Same thing again in the other side of the neck, and this time with 'two' core biopsies.
I chose the biggest wound dressings they had in stock.
Jo was quite intrigued by the colour of my skin when she came to scoop me up off the gurney in the scanning room. She supported my wobbly progress to the hospital coffee lounge to top up my obviously depleted blood sugar levels and was fascinated to witness my colour change from it's greeny, ashen hue back to a more familiar "shaved panda" pink.
So far, so good.
After all, Pleomorphic Adenoma are 'almost always' benign.
Edited by Jo W, with thanks
After all, Pleomorphic Adenoma are 'almost always' benign.
Edited by Jo W, with thanks
1. "I think I have Cancer"
October 2011
I'm going to get it in the neck for this...
I say 'think' because so far all the medical professionals that have been diagnosing & treating me have avoided using the actual word "cancer". It's as if actually saying the word would conjure up the Bogie Man. So, the "C" word must never be uttered aloud for fear of invoking a malevolent, demonic phantom... The Reaper.
I think I have Cancer, I think I have two malignant tumors in my neck.
One day I found a small lump in my neck, half way down and between the wind pipe and the carotid artery. I was only about the size of half a Malteser, it didn't hurt so I didn't give it much thought.
Two or three weeks later the lump was about the size of half a quail's egg, it still didn't hurt, and so I didn't give it much more thought.
Two or three weeks later the lump had become about the size of half a Cadbury's Cream Egg, it was tight and sore to the touch, like a deep zit, so I went to see my GP.
I said to my doctor " what's this big, ugly, lump on my neck ? He said "your head"...
Dr Pattaplola examined me and thought that it was in all probability that I had a blocked channel in my right Parotid Gland ( Saliva Gland ). This had caused the gland become infected, this is called a Pleomorphic Adenoma and in "well-over" 90% of all cases is almost always benign. I was put on a course of antibiotics, sent for a blood test and warned that should it turn out as expected I would need surgery to remove the blockage.
The swelling reduced and the soreness ceased.
The lump did not go away.
The Blood test was so easy that I was both embarrassed and a little ashamed of myself for having been even just a little 'wussy' about having it taken in the first place. Dr Pat gave me a green slip, I drove straight to Beckenham Hospital, which by the way has just been completely refurbished and looks like a set from "Scrubs". The Blood Test Dept. ( Hematology ) was completely empty of all other patients so I went straight in, sat down, absolutely no sensation of the needle going in, the blood being drawn, or the needle coming out again, nothing. I had to ask the nurse "so is that it ? are we all done here ?" It was not just totally painless, but devoid of any sensation at all what-so-ever, phew!
At the end of the first course of antibiotics, and with the lump still evident I returned to my GP. Blood work was all A-OK. So off to The Princess Royal Hospital Farnbrough for a Ultrasound Scan. By this time a small lump had also appeared in the opposite side on my neck.
I chatted to the scanner operator as he viewed through my neck. It's the same gear that is used to view fetuses so if you crane your head around you can also see the images too. He didn't seem to think there was much wrong apart from the obvious bubble of fluid which was the infection.
Back to GP, more antibiotics. Plus a referral to the ENT Department ( Ear Nose & Throat ) at the Royal ( The Princess Royal Hospital, Farnbrough ). We hear nothing from Farnbrough for two weeks. Back to the GP. The NHS has a "Choose and Book" system. They get in touch with you and you get to 'choose' the time and day for your appointment and 'book' the same over the phone. You need a password, I didn't have one, nor did my GP, NHS Choose and Book had never heard of me, my referal had not made it into the system. My GP wrote me out a second referal, I delivered it by hand, myself, to the ENT Dept at the Royal.
Time Line
6th October 2011, G.P. prescribes Antibiotics ( Amoxicillin )
12th October 2011, Blood test at Beckenham Hospital
20th October 2011, G.P. prescribes Antibiotics ( Doxycycline )
26th October 2011, G.P. prescribes Antibiotics ( Doxycycline )
26th October 2011, Ultrasound at the Princes Royal Hospital Farnbourough
Edited by Jo W, with thanks
I'm going to get it in the neck for this...
I say 'think' because so far all the medical professionals that have been diagnosing & treating me have avoided using the actual word "cancer". It's as if actually saying the word would conjure up the Bogie Man. So, the "C" word must never be uttered aloud for fear of invoking a malevolent, demonic phantom... The Reaper.
I think I have Cancer, I think I have two malignant tumors in my neck.
One day I found a small lump in my neck, half way down and between the wind pipe and the carotid artery. I was only about the size of half a Malteser, it didn't hurt so I didn't give it much thought.
Two or three weeks later the lump was about the size of half a quail's egg, it still didn't hurt, and so I didn't give it much more thought.
Two or three weeks later the lump had become about the size of half a Cadbury's Cream Egg, it was tight and sore to the touch, like a deep zit, so I went to see my GP.
I said to my doctor " what's this big, ugly, lump on my neck ? He said "your head"...
Dr Pattaplola examined me and thought that it was in all probability that I had a blocked channel in my right Parotid Gland ( Saliva Gland ). This had caused the gland become infected, this is called a Pleomorphic Adenoma and in "well-over" 90% of all cases is almost always benign. I was put on a course of antibiotics, sent for a blood test and warned that should it turn out as expected I would need surgery to remove the blockage.
The swelling reduced and the soreness ceased.
The lump did not go away.
The Blood test was so easy that I was both embarrassed and a little ashamed of myself for having been even just a little 'wussy' about having it taken in the first place. Dr Pat gave me a green slip, I drove straight to Beckenham Hospital, which by the way has just been completely refurbished and looks like a set from "Scrubs". The Blood Test Dept. ( Hematology ) was completely empty of all other patients so I went straight in, sat down, absolutely no sensation of the needle going in, the blood being drawn, or the needle coming out again, nothing. I had to ask the nurse "so is that it ? are we all done here ?" It was not just totally painless, but devoid of any sensation at all what-so-ever, phew!
At the end of the first course of antibiotics, and with the lump still evident I returned to my GP. Blood work was all A-OK. So off to The Princess Royal Hospital Farnbrough for a Ultrasound Scan. By this time a small lump had also appeared in the opposite side on my neck.
I chatted to the scanner operator as he viewed through my neck. It's the same gear that is used to view fetuses so if you crane your head around you can also see the images too. He didn't seem to think there was much wrong apart from the obvious bubble of fluid which was the infection.
Back to GP, more antibiotics. Plus a referral to the ENT Department ( Ear Nose & Throat ) at the Royal ( The Princess Royal Hospital, Farnbrough ). We hear nothing from Farnbrough for two weeks. Back to the GP. The NHS has a "Choose and Book" system. They get in touch with you and you get to 'choose' the time and day for your appointment and 'book' the same over the phone. You need a password, I didn't have one, nor did my GP, NHS Choose and Book had never heard of me, my referal had not made it into the system. My GP wrote me out a second referal, I delivered it by hand, myself, to the ENT Dept at the Royal.
Time Line
6th October 2011, G.P. prescribes Antibiotics ( Amoxicillin )
12th October 2011, Blood test at Beckenham Hospital
20th October 2011, G.P. prescribes Antibiotics ( Doxycycline )
26th October 2011, G.P. prescribes Antibiotics ( Doxycycline )
26th October 2011, Ultrasound at the Princes Royal Hospital Farnbourough
Edited by Jo W, with thanks
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