Nothing really, as I found out the other day.
Because of my self-inflicted side-effect anything that needed lots chewing of had a tomatoey base caused me eating grief. So I gave up on my pasta with chicken one night, but rather than waste the left overs in the pan - I wondered about making a soup with it for lunch the next day. Clever, eh?
Simply add your solid ingredients to the stock and simmer until thoroughly heated, then liquidise to the desired consistency....yes, well, I thought I'd used plenty stock but it gradually turned to light red baby food no 3 before my eyes. Oh dear.
Still, it tasted of chicken and pasta and got a meal down without having to the resort to the direct to stomach route.
Thursday 28 January 2010
Chewing gum
As I'm sure avid readers know, one of the main side effects of radiotherapy to neck & throat chappies is that your saliva glands stop producing as much. This is why the dentistry work is done first to let gums heal before the zapping begins.
Which is all very good unless you bite your own gum by mistake, on the side you use for chewing since it was left with more teeth than the other side and the ulcer you cause yourself doesn't heal quickly and complains about almost anything coming its way.
The external side-effect is that I am currently having to chew like a squirrel and am taking about 40 minutes to eat a course that would normally have gone down too fast in giant mouth fulls.
Still, at least it got me another new variety of mouthwash to supplement my 6 times a day bi-carbonate solution. Its tasty too. Though just as well to deal with the morning 'glut', as one staff nurse put it. I'm waking with a mouth that feels like a yogurt has been cooked to the inside overnight and when I brush my teeth the reaction between the yogurt and the toothpaste forms a remarkably dense foam that I'm bottling to use for cavity wall insulation.
More side effects to follow. I'm sure of it.
Which is all very good unless you bite your own gum by mistake, on the side you use for chewing since it was left with more teeth than the other side and the ulcer you cause yourself doesn't heal quickly and complains about almost anything coming its way.
The external side-effect is that I am currently having to chew like a squirrel and am taking about 40 minutes to eat a course that would normally have gone down too fast in giant mouth fulls.
Still, at least it got me another new variety of mouthwash to supplement my 6 times a day bi-carbonate solution. Its tasty too. Though just as well to deal with the morning 'glut', as one staff nurse put it. I'm waking with a mouth that feels like a yogurt has been cooked to the inside overnight and when I brush my teeth the reaction between the yogurt and the toothpaste forms a remarkably dense foam that I'm bottling to use for cavity wall insulation.
More side effects to follow. I'm sure of it.
Wednesday 27 January 2010
Bags of blood
First weekly chemo is next after tubing
...my system still needs some poisonous lubing
But the real surprise during this short infusion
Was news that I needed a blood transfusion
What! I said, with some surprise
My slight alarm, I couldn't disguise
Oh, Mr Gowan, don't fret will you
The treatments can reduce your red cell count too!
So white cells down and now red ones to boot
Those platelets must be thinking they're jolly well cute
Though not for long as I'm back next day
4 hours of thick red stuff just flowing away
Another day and something else new
There are so many things that can happen to you
What comes next, I can't be sure
Though at least they always provide a cure!
...my system still needs some poisonous lubing
But the real surprise during this short infusion
Was news that I needed a blood transfusion
What! I said, with some surprise
My slight alarm, I couldn't disguise
Oh, Mr Gowan, don't fret will you
The treatments can reduce your red cell count too!
So white cells down and now red ones to boot
Those platelets must be thinking they're jolly well cute
Though not for long as I'm back next day
4 hours of thick red stuff just flowing away
Another day and something else new
There are so many things that can happen to you
What comes next, I can't be sure
Though at least they always provide a cure!
Sunday 24 January 2010
Tubeway Army
That's what it needed to tell me what to do with the feeding tube. (OK, yes, I was toiling for a heading.)
Though I forget all of the names, there was the lady who lives near me that who told me that it was her that arranged to bring the hundred weight of kit that goes with the tube, she also told me that someone else would be along to give me training. Then the usual suspects from the oncologist's team, the registrar and the clinical specialist before the lady from Nutrica who told me the in & outs before giving me details of my Nutricia nurse, the district nurse and the area dietitian. Fancy!
So, to the tube, first thing is to keep it clean. It needs a daily flush. Simply flip the lid, fit your syringe, undo the lock and flush before minerals and stains appear. For little top up feeds, one also needs to flush before and after; the feed is like a high protein milk shake - that goes everywhere if you forget to open the lock and the pressure means the milk shake shoots out of other valves. Sticky.
Top tip was to turn the tube round 360 degrees every day, as "this stop it sticking and makes sure that you form a nice round hole". Have to say that the first couple of days standing with the tube in in my hands and making the required twist called for some - mind over matter*.
Thankfully Anne was on hand to transport the gallons of full overnight feed, pump, syringes and various other accouterments because the staff nurse didn't think I was serious about needing a wheelbarrow.
*The Encyclopedia of Parapsychological and Psychical Research
Though I forget all of the names, there was the lady who lives near me that who told me that it was her that arranged to bring the hundred weight of kit that goes with the tube, she also told me that someone else would be along to give me training. Then the usual suspects from the oncologist's team, the registrar and the clinical specialist before the lady from Nutrica who told me the in & outs before giving me details of my Nutricia nurse, the district nurse and the area dietitian. Fancy!
So, to the tube, first thing is to keep it clean. It needs a daily flush. Simply flip the lid, fit your syringe, undo the lock and flush before minerals and stains appear. For little top up feeds, one also needs to flush before and after; the feed is like a high protein milk shake - that goes everywhere if you forget to open the lock and the pressure means the milk shake shoots out of other valves. Sticky.
Top tip was to turn the tube round 360 degrees every day, as "this stop it sticking and makes sure that you form a nice round hole". Have to say that the first couple of days standing with the tube in in my hands and making the required twist called for some - mind over matter*.
Thankfully Anne was on hand to transport the gallons of full overnight feed, pump, syringes and various other accouterments because the staff nurse didn't think I was serious about needing a wheelbarrow.
*The Encyclopedia of Parapsychological and Psychical Research
Wednesday 20 January 2010
A Ward Hoppers Tale
Last Tuesday was my latest admission foray
For my P.E.G. fitting the following day
Two nights they said I would be needing
For insertion of a tube just for my feeding
But after being for my daily radiotherapy
I encountered some unusual ward gallimaufry
Having reported as instructed to the usual ward three
I was surprised to find that they were not expecting me
It took a few minutes and a fast growing huddle
For someone from ward 4 to clear up the muddle
So I was on the list to be housed in ward next door
But please could I wait for she who manages the floor
I thought at he end it was well worth the wait
As the twin room she showed me really was great
Though she warned right away that I may not be alone
Should she need to find another patient a home
So I settled down with some quite easy sudoku
Until a quick return visit from the lady who knew
Who told me, sorry but I would have to scoot
As they'd someone, I think she said rather more 'cute'
No bother I agreed, to move right away
To another new bed for my 2 night stay
Ah - if only we had just one cute patient she said
It's a hike to ward fifteen for you instead
I wasn't too bothered, I was easy to move
But their system lacked such a simple groove
The welcome committee said go to room 7
There's beds to choose from in our peaceful wee haven
A confusing thing though was about to be seen
In that room 7 was also room 2 on ward 14
Don't worry she advised, as we know its our bed
But perhaps get out of dermatology for your shower she said
Telling my visitors how to find me was fun
A new ball of wool was going to need un-spun
This proved a problem for oncology staff too
As each arrived breathless, saying I couldn't find you!
Being positive though it was a not bad visit
Made pleasant by Sarah, a nursing flibbertigibbet
Plus different patients with new ailments to share
And...weird skins conditions that really do scare
For my P.E.G. fitting the following day
Two nights they said I would be needing
For insertion of a tube just for my feeding
But after being for my daily radiotherapy
I encountered some unusual ward gallimaufry
Having reported as instructed to the usual ward three
I was surprised to find that they were not expecting me
It took a few minutes and a fast growing huddle
For someone from ward 4 to clear up the muddle
So I was on the list to be housed in ward next door
But please could I wait for she who manages the floor
I thought at he end it was well worth the wait
As the twin room she showed me really was great
Though she warned right away that I may not be alone
Should she need to find another patient a home
So I settled down with some quite easy sudoku
Until a quick return visit from the lady who knew
Who told me, sorry but I would have to scoot
As they'd someone, I think she said rather more 'cute'
No bother I agreed, to move right away
To another new bed for my 2 night stay
Ah - if only we had just one cute patient she said
It's a hike to ward fifteen for you instead
I wasn't too bothered, I was easy to move
But their system lacked such a simple groove
The welcome committee said go to room 7
There's beds to choose from in our peaceful wee haven
A confusing thing though was about to be seen
In that room 7 was also room 2 on ward 14
Don't worry she advised, as we know its our bed
But perhaps get out of dermatology for your shower she said
Telling my visitors how to find me was fun
A new ball of wool was going to need un-spun
This proved a problem for oncology staff too
As each arrived breathless, saying I couldn't find you!
Being positive though it was a not bad visit
Made pleasant by Sarah, a nursing flibbertigibbet
Plus different patients with new ailments to share
And...weird skins conditions that really do scare
Tuesday 19 January 2010
When's a PEG not a PEG?
When it's a RIG. Silly.
After zapping on Monday it was slipper time on Tuesday, as I was due in to have my PEG fitted after Tuesday's zap. Despite a bit of gallimaufry about wards during my visit (see A Ward Hoppers Tale) I was fairly quickly put straight about my PEG procedure. Yes it was still on for Wednesday, but it was going to be a Radiologically Inserted Gastrostomy and not a Percutaneous Endoscopic Gastrostomy. Whatever, there would still be a plastic tube sticking out of my stomach at the end of the week!
So, Nil By Mouth after supper on Tuesday, early zap on Wednesday then wheeled down for my procedure dressed like an old woman. Nothing else can describe the theatre gown that fastens up the back and just about covers the knee, before the porter tells me that it will be a little cool out and folds a wee blanket over me like a nice cosy shawl.
Introduced to a cast of around 10, I find out that it's a little sedative and a local anaesthetic around the site. Nice, that way I'm awake to chat to Steven the surgeon about what's going on. First though, which nostril would I prefer? You see the radiological part is the guidance system that goes down to my stomach via my nose. It must be like eating live insects on one of those daft TV shows, but without getting to chew first. Steve keeps asking me to take a big swallow, but its weird and very tickly on its way down.
Then I hear it "scalpel! says Steve" - though can't feel a thing except my skirt being lifted and someone with rubber gloves on massaging gel on to my stomach. There's wee bit of chat, but before I know it, the stitches (well, staples) that are holding my stomach up near the surface are in and Steve's trying to stop one of them from weeping blood, or something.
Then its all over and I'm pretty soon back to bed with instructions to buzz for morphine(!) when I need it - they seem pretty certain that it will be sore when the local and sedative wear off. Correct.
I have a peek later on and wonder if the name RIG was the chicken or the egg; its looks just like a wee oil rig with the main well centered on a round platform and three columns spaced out at points of the triangle with support cables running through them.
I pretty much woose out of movement on Wednesday and when I make it up on Thursday I find an immediate wee issue, I'm like a Dug with two d-d-dangly things. Where do you put it while you go to the loo I wonder? Eventually surgical tape saves the day and I waddle off to get my daily zap.
Home in time for tea and first public showing for the boys - wow they say, what do you do with that???
After zapping on Monday it was slipper time on Tuesday, as I was due in to have my PEG fitted after Tuesday's zap. Despite a bit of gallimaufry about wards during my visit (see A Ward Hoppers Tale) I was fairly quickly put straight about my PEG procedure. Yes it was still on for Wednesday, but it was going to be a Radiologically Inserted Gastrostomy and not a Percutaneous Endoscopic Gastrostomy. Whatever, there would still be a plastic tube sticking out of my stomach at the end of the week!
So, Nil By Mouth after supper on Tuesday, early zap on Wednesday then wheeled down for my procedure dressed like an old woman. Nothing else can describe the theatre gown that fastens up the back and just about covers the knee, before the porter tells me that it will be a little cool out and folds a wee blanket over me like a nice cosy shawl.
Introduced to a cast of around 10, I find out that it's a little sedative and a local anaesthetic around the site. Nice, that way I'm awake to chat to Steven the surgeon about what's going on. First though, which nostril would I prefer? You see the radiological part is the guidance system that goes down to my stomach via my nose. It must be like eating live insects on one of those daft TV shows, but without getting to chew first. Steve keeps asking me to take a big swallow, but its weird and very tickly on its way down.
Then I hear it "scalpel! says Steve" - though can't feel a thing except my skirt being lifted and someone with rubber gloves on massaging gel on to my stomach. There's wee bit of chat, but before I know it, the stitches (well, staples) that are holding my stomach up near the surface are in and Steve's trying to stop one of them from weeping blood, or something.
Then its all over and I'm pretty soon back to bed with instructions to buzz for morphine(!) when I need it - they seem pretty certain that it will be sore when the local and sedative wear off. Correct.
I have a peek later on and wonder if the name RIG was the chicken or the egg; its looks just like a wee oil rig with the main well centered on a round platform and three columns spaced out at points of the triangle with support cables running through them.
I pretty much woose out of movement on Wednesday and when I make it up on Thursday I find an immediate wee issue, I'm like a Dug with two d-d-dangly things. Where do you put it while you go to the loo I wonder? Eventually surgical tape saves the day and I waddle off to get my daily zap.
Home in time for tea and first public showing for the boys - wow they say, what do you do with that???
Monday 11 January 2010
Zappy new year!
Things are hotting up on the treatment front with the initial zap hitting home at lunch time today.
My chief zapper, or Radiologist in hospital speak, is called Laura - didn't ask if she had an uncle Frank. Though did ask what the team called the mighty machine that spun round to zap both sides of my neck. I don't think they shared my sense of the absurd though - so its Linear Accelerator No 3. Today therefore its no nonsense and science instead.
The linear accelerator uses microwave technology (like radar) to accelerate electrons inside the machine which then generates high-energy x-rays. The high energy x-ray beam is then directed at the tumor.. The patient lies on a moveable treatment couch and lasers are used to make sure the patient is in the proper* position. Radiation can be delivered to the tumor from any angle by rotating the gantry and moving the treatment couch. Science over.
*the patient is also pinned in place by their mask, which Laura did say is subject to shrinking and may therefore get tighter! Oh goody. Since it was only 10 minutes I thought I'd be fine, but a quick look in a mirror showed that my giant forehead looked like a meshed potato.
Only 34 zaps to go.
My chief zapper, or Radiologist in hospital speak, is called Laura - didn't ask if she had an uncle Frank. Though did ask what the team called the mighty machine that spun round to zap both sides of my neck. I don't think they shared my sense of the absurd though - so its Linear Accelerator No 3. Today therefore its no nonsense and science instead.
The linear accelerator uses microwave technology (like radar) to accelerate electrons inside the machine which then generates high-energy x-rays. The high energy x-ray beam is then directed at the tumor.. The patient lies on a moveable treatment couch and lasers are used to make sure the patient is in the proper* position. Radiation can be delivered to the tumor from any angle by rotating the gantry and moving the treatment couch. Science over.
*the patient is also pinned in place by their mask, which Laura did say is subject to shrinking and may therefore get tighter! Oh goody. Since it was only 10 minutes I thought I'd be fine, but a quick look in a mirror showed that my giant forehead looked like a meshed potato.
Only 34 zaps to go.
Friday 8 January 2010
Pegging
Question, is it:
a) a technique for attaching clothes to an external drying line;
b) a memory technique to help prompt yourself in presentations;
or,
c) fitting a tube directly into your stomach for feeding?
Answer. All three. But I'm not putting it here because I've been hanging washing out or practicing a speech, its because after ironing my face when I got home, I got a call from the Western to confirm that they had a date for me pegging. Oh great, I thought, I was hoping that they'd decided I wouldn't need it since I've been a model patient.
Dream on...peg, or feeding tube it is for when my throat complains and I potentially can't swallow. Need to keep my weight constant you see, so that my mask is nice and tight.
So two nights in next week while they check me out then staple this thing into my stomach and teach me how to use it. Wonder if it'll be OK to slip a glass of wine down with my liquidised steak?
a) a technique for attaching clothes to an external drying line;
b) a memory technique to help prompt yourself in presentations;
or,
c) fitting a tube directly into your stomach for feeding?
Answer. All three. But I'm not putting it here because I've been hanging washing out or practicing a speech, its because after ironing my face when I got home, I got a call from the Western to confirm that they had a date for me pegging. Oh great, I thought, I was hoping that they'd decided I wouldn't need it since I've been a model patient.
Dream on...peg, or feeding tube it is for when my throat complains and I potentially can't swallow. Need to keep my weight constant you see, so that my mask is nice and tight.
So two nights in next week while they check me out then staple this thing into my stomach and teach me how to use it. Wonder if it'll be OK to slip a glass of wine down with my liquidised steak?
Meshy business
Well, after mask fitting its been all quiet on the Western front, until this week when I enjoyed a spot of simulation with three nurses whilst pinned down to a bed.
I'd thought it was just going to be a quick lie down with my mask on whilst I was introduced to the Zappatron 6,000 and they checked that it would hit the spot marked X, but no, its more scientific than I'd realised!
Yes, it did feature my very own mask, but rather than wheeling in the Zappatron - it was all done with lasers, new stickers for my mask and coloured felt pens! My quick overview told me that this would be the longest I'd have the mask on; 20-25 minutes! and that they'd leave me in the dark whilst they moved the bed around to get me lined up accurately, and "you might find the mask quite tight". Spot on.
At first I was back to thoughts of suffocating, but decided to appear brave and as breathing through my mouth was possible I gave them a them a thumbs up to proceed before relaxing to Fleetwood Mac (Rumours). Gradually I was spun, calibrated and had my nose drawn on as they marked up the mask and chatted odd numbers - yes, 10.2 to 10.4? Agreed. And, the bed was on the move again...
Wasn't too bad on reflection and me and my mask were then taken to the place I've to report to on Monday for the real thing. Her parting shot was not to be too concerned if I looked in the mirror soon, as having the mask on for so long leaves a nice mesh effect for a while!
Next it was upstairs to see the dentist who confirmed that I did indeed have a meshy face and cleaned out the small cavern left by my multi-molar extraction.
I'd thought it was just going to be a quick lie down with my mask on whilst I was introduced to the Zappatron 6,000 and they checked that it would hit the spot marked X, but no, its more scientific than I'd realised!
Yes, it did feature my very own mask, but rather than wheeling in the Zappatron - it was all done with lasers, new stickers for my mask and coloured felt pens! My quick overview told me that this would be the longest I'd have the mask on; 20-25 minutes! and that they'd leave me in the dark whilst they moved the bed around to get me lined up accurately, and "you might find the mask quite tight". Spot on.
At first I was back to thoughts of suffocating, but decided to appear brave and as breathing through my mouth was possible I gave them a them a thumbs up to proceed before relaxing to Fleetwood Mac (Rumours). Gradually I was spun, calibrated and had my nose drawn on as they marked up the mask and chatted odd numbers - yes, 10.2 to 10.4? Agreed. And, the bed was on the move again...
Wasn't too bad on reflection and me and my mask were then taken to the place I've to report to on Monday for the real thing. Her parting shot was not to be too concerned if I looked in the mirror soon, as having the mask on for so long leaves a nice mesh effect for a while!
Next it was upstairs to see the dentist who confirmed that I did indeed have a meshy face and cleaned out the small cavern left by my multi-molar extraction.
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