Pauline's Diary - Page 3
Head & Neck Cancer Radiotherapy - The First Week of Treatment
On this Head and Neck
Cancer Diary page 3 you will find:-
Click on the links below to go to related pages:-
I started to write
this section as a diary, but fatigue soon took over and so after a week
two it's written in retrospect from hand notes I made.
Today was my first
session of actual radiotherapy to treat my occult primary head and neck
cancer (SCC). It's now 22.30 on a Monday night and I
feel kind of spaced out, even though I don't know really know what
feeling spaced out is like. Zombied and zonked is how I'd describe it.
A permanent feeling as if a fire alarm has gone off at 3.a.m. in a hotel
and you just want to crawl back to bed.
I don't feel myself.
In fact I feel very peculiar, slightly disorientated and I feel so fragile
almost frail. I think this may be
due to an overwhelming sense of nausea, yet I doubt if I could be sick.
It feels a bit like any motion or sea sickness and the thought of going
in the car for the second treatment tomorrow is grim.
I never expected the
metallic taste to occur on the first day. It goes with me everywhere.
Food that normally tastes good is already flat and vile.
In the early hours of
the morning I woke up and realised that the strange feeling I had
earlier yesterday and still with me was that the cheeks of my face felt as if
they were
being "cooked"!
Got up dreading going
for the midday radiotherapy session still feeling slightly disorientated and
nauseous, but gave myself a talking to and decided that if I felt this
bad this early in the treatment, the cancer cells must be feeling even
worse. Wondering if most people feel like this the first day or so and
then get used to it. Also decided to take it one day at a time rather than
contemplating six weeks of this. Feel very thirsty and throat is drying
out quickly.
It seems from what
the radiotherapist said I need to get some Johnson's baby soap or Simple
soap to wash my face with, rather than using cleansing products or just use water. I've tried to be really organised beforehand
getting in a juicer and whey protein for emergency nourishing food etc,
but this simple information would have been more useful before. One
reason for writing this diary is that I've found so little "female"
oriented information on the treatment I'm having.
Hmmm normally use
make up cleansing wipes or Decleor or Elizabeth Arden cleansing lotion
and sometimes wash with Dove cleansing bar for that scrubbed feel
without dryness, but as make up foundation is out now, it's no problem
to use just the baby soap once in the morning to wake me up.
They gave me
Chlorohexidene Gluconate as a mouthwash to use 4 times daily and also
gave me Aqueous cream to use liberally on the irradiated area of skin.
Applied the Aqueous
cream lotion they gave me to my face, neck and as far as my cleavage, the area
now hinting at redness, not forgetting the back of my neck which is also
getting treatment. The consultant who is wonderful, said not to use other
creams without checking with her as they might contain metals. I feel
she understands my vanity fears because she is a woman. She's been
really kind and patient with my questions particularly about hair loss.
She reckons it will occur in the radiation field at the nape back head
parallel from under cheekbones/mid ear down. We'll see.
It seems that metals
can interfere with the radiotherapy and cause more severe irritation,
hence the use of Johnson's baby shampoo instruction. For what it's worth
some internet cancer sites suggest you can only wash your hair once a
week. I checked with my oncologist and she said as long as I used the
baby shampoo and avoided excessive skin wetting I could wash my hair
daily as I always do. Frankly having spanking clean hair does so much
for your morale, that to limit people to once a week is ludicrous in my
opinion when it's the pH balance of the shampoo and metallic content
that's all important, rather than the frequency of washing.
The same problem with
metals of
course applies to make up. She has said I can wear lipstick and mascara when
not having treatment. Later the radiotherapists said I could wear
lipstick and eye make up during treatment as my lips and eyes were not
in the field of treatment. Someone I email who had radiotherapy to her breast said that using
deodorant caused reddening under the arms as there was an element of
"splash" in her treatment area. Deodorants of course often contain metal
salts such as aluminium. It's not a problem in my case, but obviously
splash does occur as yesterday they checked the amount of radiation
splashing to my eyes, and today said it was satisfactory.
Yikes! This is
serious stuff.
When I mentioned the
sickness to her she said I should be drinking 5 to 6 pints of water
daily. Which means I need to start drinking it early in the day. Again
circumstances were such yesterday on the first day of actual therapy
that we spent 5 hours out of the house without refreshment what with
getting to and from the hospital, a 50 minute re check in the mould room
on my face shell and even further checks before the first treatment,
along with a repeat of hearing information that would I feel have been
more memorable in a leaflet.
We've learnt a
lesson, keep plenty of water and drinks readily available. When you have
an appointment and think you'll be called any moment, but there is a
delay, you kick yourself for not going to get food when a 45 minute wait
has passed by.
The head shell had to
be refitted before the treatment yesterday and today as apparently I had "relaxed" (who are
they kidding) and new measurements were required. From their comments I
believe they work to the nearest half millimetre. It all seems very
technical and as precise as they can get it. I really believe they are
doing their best to help me. Yesterday I realised 8 people dealt with me
as a patient and it occurred to me would there be all this investment in
treatment without some justification for success.
Desperately want my
facial skin to be ok as I've always had very good facial skin and people
still comment on how clear it is. The picture in the header was taken on
my 54th birthday 9 days after the neck operation in July 2002. Over the
years I have spent plenty of money pampering it, but feel it has been
worth it. Wish I'd had shares in Elizabeth Arden and Estee Lauder years
ago. I ask myself is the average vanity I've shown some kind of
punishment to be landed with a possible facial cancer, but know it's
just bad luck and living in a polluted environment that is now less
than perfect for everyone in society.
And hey what about
the effects of Chernobyl the weekend of April 26 in 1986? Is my cancer a
late effect of it in UK? Where was I that weekend? How could anyone
forget where they were. I was in both South Wales UK and Stoke on Trent in
Staffordshire. Heavy rain fell in both places. Can't help wondering what
the fallout was that weekend. Just looked it up in Google.com - oh
dear the main cloud fell over Wales...
I made fresh carrot juice with red pepper and
celery and as the juicer was out felt compelled to juice 3
apples at the same time. Washing the juicer is straightforward, and
really only takes a few minutes, but it's still a pain. However if my
desire to eat after treatment is as affected as it was yesterday I think
getting "any food, of any type" I can stomach first thing could be the
answer. All my great plans for healthy nutrition are flying out of the
window in the face of lack of appetite. Now I see why all the nutrition
advice seems superficial and frankly bad when you read any cancer help
pages. The healthy diet seems the only option in principle, but when it comes to the crunch,
any food, some food is better than no food.
The fact is I don't
fancy much in the way of foods. Foods I had mentally planned to eat from
a nutrition point of view either already taste like cardboard, or of
nothing, or totally different to usual or slightly metallic. Sweet food
tastes over sweetened and salted foods have no salty taste. I never
expected the effect to be so rapid - maybe after a week or two yes, but
not after 2 treatments. I can see what the problem is - lack of saliva
already. Faster than I expected. I knew, but never seriously thought
before how important saliva is to make food palatable. Until it actually
happens you have no idea how vital a bit of spit is to chew your way
through just about everything. Also I keep wondering if no ptyalin is
being released how does the food in my stomach get digested properly. To
get through a meal you need water or a drink.
We travelled to the
Oncology unit in Cheltenham and I found sucking just one mint Tic Tac made a huge
difference to my nausea. I've read about people holding ginger in their
mouth during treatment, but for me it's not an option as the head and
neck clear Perspex style shell is firmly fixed (bolted) to the treatment
table along with me under it and choking could be an issue. Kept sipping
from the water bottle as my mouth seemed tacky. Saliva has begun to
thicken up and my glands feel puffy.
Still the staff at
the Oncology centre are marvellous, so kind, so patient, so caring to
get the measurements perfect to the half millimetre. It's not a job I
fancy I must say. I know from the patience showed to me in the various
treatment rooms that the radiotherapists are doing highly skilled
measuring every minute you are with them. Waiting around is more of an ordeal
for any partner who goes with you. Was advised to take soluble paracetamol for
initial pain and they would upgrade the pain medication as pain
increased.
Food which has always
been one of my greatest pleasures is suddenly a pleasure no more. I know
part of the problem is that I no longer want to prepare it as I have no
appetite.
So we popped into
Marks and Spencer and I found myself buying several small ready meals of
"comfort" foods like cottage pie, spaghetti carbonara, corned beef
rissoles and a few other soft junk foods and bread and butter pudding -
the sort of foods I usually turn my nose up at, unless a gourmet version.
I really enjoyed that cottage pie. I got through eating it by
talking to my sister on the phone whilst trying to ignore how yucky it
was. It was only a teeny portion and it tasted like glue, but I was so
pleased I ate it all. I'm sure it usually tastes fine, but I realise
that after 1 tablespoon of food you need a fresh food as the taste
rapidly palls.
Thursday 5th Sept 2002Realised this morning
that drinking the water is the possible key to controlling the nausea. I
definitely felt better on Wednesday than on Monday and Tuesday. Maybe it
takes a few days to get used to it. Am having a 2 hour nap everyday.
Tiredness seems to set in about 3 hours after treatment. How do
people carry on working. There is no way I could work during this.
Concentrating on getting through the day from a nutrition point of view
and having the treatment and cleaning and rinsing the mouth six times a
day and resting just eats it up, apart from feeling unsociable.
We went for a 9
o'clock appointment today, because I had to be at my local
Worcestershire hospital for
midday for a mammogram that the consultant radiotherapy doctor wanted
just in case it was one overlooked scan. My last mammogram was in
December 2000, this machine was different than that at the mobile unit
and whereas the 2 previous mammograms I'd had were comfortable this was
a new machine and it was different and frankly, really painful. Now I
know why some women have complained they find mammograms painful. Different types of
machine, different pain.
Having cancer is time
consuming. Hours are spent waiting in hospitals and in traffic jams and
thinking I must drink water to help detoxify, I must eat, I must clean
out my mouth and floss it, I must just
check this idea out in Google.....
My husband is
concerned about the nutrition so they've booked me in for a dietician
appointment next Tuesday. They weighed me today. I've lost about 14
pounds since mid June and no I'm not going to publicly write what I
weigh here. A woman's weight is a personal thing - very personal <g>. That
should give you a clue that I'm about 40 pounds overweight. It would be
great to lose it, but I'm being reminded every day "you must not lose
weight". Nutrition is needed to fight the cancer cells and rebuild those
good cells damaged by the radiation. I never thought I'd have to force
feed myself. I can tell you this is a big insult to me as I have always
been something of a gourmet. I've always so far thought in terms of live
to eat not eat to live!
Strange day. Whilst
waiting in the Oncology unit I actually felt cheered when I opened the
newspaper and read of two famous people having cancer. Both found
lumps in their necks and I suppose it made me realise that fame, money,
wealth mean nothing in the end as they will probably need to have a very
similar treatment to me. Further on the paper highlighted the story of
another well known person doing her best to live despite there being a
rather previous report of her death when she is alive although unwell.
Yes knowing more are in the same boat as me is heart warming.
Yesterday and today
had several great letters from people congratulating me on my website
www.fashion-era.com . It always makes it
all seem worthwhile. I really want to change the colour scheme and add
lots of ideas I have, but now is not the right time. This diary,
although out of place in the scheme of fashion-era will be the next
upload.
My Cancer Mantra
Friday 6th Sept 2002Went for the
radiotherapy.
After, when I applied my aqueous cream to the slowly reddening skin I
noticed a faint paler stripe of skin down the centre of my throat and
this is parallel to my spinal cord. I notice when they set the
machine to irradiate that area they spend ages angling two lead blocks
to prevent rays passing through in particular areas. One block is placed
centrally and falls over the centre of my throat protecting my spinal
cord and another one on
my right face side protects my lymph glands on the right. But the other half of the face has no lead block
protection and matches the side with the lump which is getting the
treatment. It really is all very precise. I do ask about 2 questions
everyday, but it takes a while to absorb the routine of it.
I've developed a way
of coping with the actual bursts of radiotherapy. I have a radiotherapy mantra that I
worked out for myself.
My cancer mantra is
important to me.
I wanted to make it memorable so during the radiation
treatment bursts and any other time I'm getting bored with all the
fitting I say to myself in a Dr.Who Dalek staccato style voice, "The
cancer cells are being eliminated. Eradicate, I say eradicate the cancer
cells. Eliminate, eliminate the cancer cells. All cancer cells are being
eliminated. I repeat eliminate the cancer cells. Eradicate, eradicate,
eradicate until all cancer cells are gone, all cancer cells must be
eliminated". I repeat a form of this whilst visualizing a Dalek
style shotgun black cloudburst in cartoon
style completely obliterating the lump that was there until it is a
black hole.
Sometimes I say a little prayer and thank God for carrying
me through dark moments and giving me the strength not to feel
claustrophobic and panicky in the shell which I do feel quite often. Repeating
phrases like " calm, calm, calm, calm " help a great deal. I
often feel panicky in the mask and realise that this whole thing is
based on trust that they will come back to release me. The fact that
there are always two or even 3 radiotherapists treating you helps a great
deal. My mind tells me at least one of them ought to remember to come
back to get me out. This sounds daft to someone not experiencing it, but
believe me when you are bolted down feeling the bolt withdrawn is
accompanied by a huge sense of liberation.
 When the
radiotherapists have bolted me and the shell mask to the bed they spend
a lot of time aligning a green laser beam to marks drawn on my mask and to a
small pinhead dot tattoo they put between my breast cleavage. I hate
this spot because to me it looks like a blackhead and I wish they had used a
red pen so it looked more natural. They
measure with special rulers to the half millimetre, checking
measurements they have on a Computer screen monitor both in the room
with you and outside the treatment room at their workstations. The
measurements were done firstly in the planning stages in the simulator room.
First the huge
Linear Accelerator machine rotates to the left side face basically directed at my cheeks, but in
reality to the depth of the pharynx and when all is set, and that can
take some five minutes or more, they leave the room and press a buzzer.
The lead door slams! Warning lights come on everywhere. Outside they
have a monitor of the treatment room focused on the treatment bed embedded flat in their work
surface so your privacy is protected. Only the radiotherapist stood over it can see you in the room.
Then they set the treatment buzzer on the computer and the computer
records the dosage as the X ray treatment begins.
You have to keep
perfectly still when they measure you and when waiting for the radiation
beam. About a minute or two later after they leave the room the treatment area receives the
radiation as they coordinate their computer outside. The noise is loud and sounds like a deep, but resonating high
frequency. I hardly breathe when this happens and think only of my Dalek
like cancer
mantra. They say you don't feel
anything. Personally I think that on some occasions I've felt an
awareness that something was happening, particularly on day one when
there was a sensation of vibrating penetration. But they are right it
does not hurt during treatment, although there are post therapy feelings
that affect you after.
They come back and
that's the moment to wriggle if vital, believe me your foot, nose or lip
or eye always need a scratch just as they leave the room! Then they measure again and do
the right side and set the buzzer again and disappear. That noise starts
and when the treatment happens it's probably no more than 30 seconds.
I
get 2 Gy daily which I believe is the standard maximum for curative
treatment, whereas for palliative treatment for pain relief they give up
to 4 Gy, but in the latter case they are not concerned about long term
after effects only pain relief for a patient, hence the lesser dosage
for curative treatment. (Gy is pronounced gray)
For a third time they
come back, arrange the machine so it's over my head and arrange those
protective lead blocks. My frontal neck position to my cleavage line
gets treated. Finally they return and measure again for a fourth time and
then swing the machine around and under the treatment bed so it does my back neck.
Sometimes they take some 4 second X ray pictures to check the
positioning for the consultant to peruse, so that all adds to the treatment time. In all my husband
says it takes about 20 minutes before I emerge.
 In
the radiotherapy treatment room there are several shelves lined with all the
Perspex clear masks of people who are also having treatment in a similar
time span to me.
Head and neck cancer radiotherapy
masks can also be made from a diamond shape mesh like material. Both
methods are used. Sections from the clear Perspex
can be drilled away from the
mask and this is useful for mixed radiation treatment types such as
targeted extra electron treatment
Each persons mask is slightly
different as their radiation plan is personalized and tailored to their
known cancer positions. The theory is that the cancer is precisely targeted
according to each persons X-rays, scans and facial measurements, so only bad
cells are killed by the radiotherapy rather than good cells being destroyed.
Still finding food a
problem. I should know better about nutrition and having worked in a
Home Economics department for many years I do. But this is what I've
eaten today. I enjoyed very little of it, but at least managed to get it
down. Breakfast was a small portion of potato gratin from Marks,
followed by half a banana my husband had left for me. How sweet of him.
I doubt if I'd have peeled new one just for me right now!
After the treatment
at about 3 pm I had a small trifle from Marks and 2 tablespoons of
spaghetti carbonara. I think the trifle almost tasted normal, but again
slightly gluey after about half of it. I left all the bacon in the
spaghetti. Meat has no attraction. It has a cardboard quality. Chicken
breast is the worst with a pure kitchen roll texture.
Later I had a Marks
ready meal of potato topped mixed vegetables in white sauce followed by a bowl of
fresh raspberries with vanilla ice cream - excellent. I'm getting to
know what is palatable and what is not. Water biscuits and cheese are a
big no no with the saliva problem. The only food
failure today was when I made a crab sandwich. I had to run to the
lavatory to spit out the only mouthful I'd had. (Looking back on
these weeks I feel now how well I ate initially.)
Am amazed that
carbohydrate is the only food that tastes good. The thing is I ate food
and that's what matters. They hint that about day 14 the throat will be
raw and burnt so need to eat now whilst I can despite the taste factor.
One week (well 5
days) of therapy over. Hurrah!
Just noticing a strange burning sensation on the
tip of my tongue.....feels like I've had hot chillies... tingling,
burning tongue tip....no amount of fluid or water can quench this thirst
of feeling on fire.
Saturday 7th Sept 2002Got up and throat
very dry. Managed cornflakes in creamy milk for breakfast. Had to let
them soak for 5 minutes, but they tasted almost normal.
Going into Worcester
in a short while to see Jenny the Chinese doctor at the Imperial Herbary
in the Hopmarket.
Have washed my hair
in my usual shampoo and my it looks so much better than with the baby
shampoo which leaves the hair in my opinion limp and lank - yes just
like limp baby hair. I put Max Factor Lipfinity lipstick on my mouth -
so that will last all day, shaped and contoured my eyebrows and used
mascara. I feel any residue will be cleaned off by Monday and I can use
the aqueous cream they gave me as a cleansing product. What a relief not
to have to go today. I feel human again and almost normal apart from the
mouth taste and burning tongue tip. The make up makes me feel as if I
have my life back, even if only for the weekend. The rigor of the daily
visit is demanding mentally.
Went to see the
Chinese doctor again.
She was really
helpful and sympathetic about the appetite, dry mouth, poor saliva
production and metallic taste problem. She said my tongue was burnt on
the tip, confirming my suspicions last night, but much less greasy than
her diagnosis last week. She agreed that eating any food was better than
no food so was adjusting the prescription to contain a herb that would
stimulate appetite. As a lifelong weight watcher I find this
hysterically amusing, never ever having needed my appetite stimulating
before. I was always ready for more gourmet food before. She also added
2 herbs to increase saliva production and another to help with the
burning in my mouth.
She adjusted the
prescription to begin on Monday to now include Codonopsis root, Lilyturf
Root, Snake Gourd
Root and Hawthorn Berry whilst keeping the original base of Astragalus
Root, Skullcap Root, Gardenia Fruit, Self-heal, Tuckahoe, White
Atractylodes and Oldenlandia. Being me I have of course looked
everything up on the internet and am amazed at her understanding of my
situation. She prescribes herbs that are ideal I would say for the
condition. Hmmmm noticed that sometimes now I call this my condition as
calling it my cancer is hard when it is supposedly microscopic and no
one
knows where it is other than somewhere in the region of my face and neck.
I was really pleased
when she said I could brew it every 2 days. Brewing it daily is
demanding on top of everything else.
When we came home I
did some more simple cooking preparing a few soft foods for tomorrow,
which included cabbage and mashed potato into which I added some cream.
Tomorrow I'm going to have bubble and squeak, but meat holds no desire.
They are hardly the foods of foodies, but they are what I can probably
stomach at this time. One thing that generally tastes good is fruit. I
think it must be the sweetness and softness element. I'll not try a dry
water biscuit again in a hurry.
I've been rubbing the
aqueous cream in about 4 times a day and she thought the redness
was not too bad which pleased me. Have also used it tonight to cleanse
off the mascara and Lipfinity, which wonderful as it is, is still on!
It's been a great day
compared to last Monday. No nausea and I've managed to eat a few things.
I'm not sure if it's because I don't need therapy for 2 days or I've got
used to it. Jenny the Chinese doctor said I would feel much worse
without the medicine. I know she has a vested interest, but my energy
level today is almost higher than normal.
I spoke/wrote too soon
-
by week 2, once treatment started again, I found it far too difficult to
sit daily at the PC so the remainder of this record will be written in
retrospect.
Footnote :- The unit of radiation measurement is
the Gray (Gy) Other units include the centiGray (cGy) and the rad. One cGy
equals one rad. One hundred cGy equals one Gray and so, 60 Gy equals 6,000
cGy. Although the term rad isn't used now, 6000cGy equals 6000 rad which is
why people who have had radiotherapy refer to it as having had rads. The
radiotherapy is delivered in fractions. For example I had 30 days of
treatment of 2Gy or 200cGy for 5 days a week which totalled over the six
weeks (minus rest weekends) 6000cGy or simply 60Gy.
Click here to go to the immediate
weeks after radiotherapy, many photographs of the burns and taste
recovery
Click here to go to weeks 2 to 6 of
radiotherapy and initial photos of the burns and mask pictures.
Head & Neck Cancer Diary & Radiotherapy After Effects
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