Tips
The following are some tips that I learned during the
course of my treatment. Some I learned from friends and
fellow sufferers, but mostly they were learned through
experience and good old fashioned trial and error. I've
written them down here in the hope that they will
benefit others and help them to cope a little better. If
you're currently in the the process of receiving
treatment or like me have come through it and have some
tips of your own that you would like to pass on, then
please email
me and I'll add yours to the list. Thanks
SOYA MILK
If you are dairy intolerant as I am, it is a good thing
to remember that soya milk interferes with the
absorption of Thyroxine. I always take my Thyroxine
tablets during the night, as the stomach is empty and
they will be absorbed better. However, at breakfast time
I make sure I use oatmilk when I prepare porridge, as
this does not interfere with the absorption of Thyroxine.
TIPS FOR A LOW IODINE DIET
Avoid eating the following:
Dairy products (including chocolate due to the milk
content)
Egg yolks
Anything with red food colouring in it (E127) such as
glace cherries, tinned strawberries, spam or salami, or
pink cakes or sweets.
Any fish and seafood
Sea salt
Iodine-containing vitamins and food supplements
Potato skins (the inside of the potato is fine to eat)
Soybeans and soybean products such as tofu
Bakery products containing Iodine or sea salt
MY DIET
My diet consisted of chicken, turkey, shepherd’s pie
made with turkey mince, turkey burgers, a little red
meat, lots of vegetables, wholemeal bread (but made sure
there was no sea salt in it), fruit and fruit smoothies,
salads, and herbal and fruit teas (they don’t need any
milk added). As I have an allergy to cow’s milk I
didn’t eat dairy produce anyway, but I did find it
hard giving up salmon and trout for a fortnight. I was
told a little bit of soya milk would be ok, so I used to
buy the Alpro soya yoghurts. For breakfast I used to
have (and still do) porridge made with oatmilk and a
little honey added.
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HAIR WASHING
You may well find it useful to arrange for someone to
help wash your hair once you've had the thyroidectomy or
neck dissection. I found it very painful for a while to
lift my arms much above shoulder height after I'd had a
neck dissection, and for both operations I could not
move my neck much at all afterwards..
SEAT BELTS
Depending of course on which side of the neck your
operation was done and on which side of the car you sit,
you might benefit from a seat belt cover. They're
usually pink and fluffy and sold in the
"go-faster" section of the motor spares shop.
They're great for sore necks.
LOOSE FITTING NECK LINE
Make sure the top that you take into hospital with you
that you intend to wear for the journey back home has a
low or loose neck line. The last thing you'll want is
anything that rubs on your new scar.
MAKE USE OF A PILLOW CASE
It is common with a neck dissection (and sometimes with
a thyroidectomy) to have drains fitted for a few days to
allow excess fluids to be drawn off and prevent
swelling. I had two large drains after my neck
dissection. The pillow case comes in handy when you want
to escape the confines of the hospital ward or room and
have a walk round. The drains can fit nicely in the
pillow case and be tucked under your arm. This then
enables you to walk around without attracting too many
unwelcome stares.
ITEMS TO TAKE INTO THE RAI ROOM
Plenty of reading material, crosswords and puzzle books,
an MP3 player, and if you can lay your hands on a
portable DVD player and some DVDs, it'll help while away
the hours. Also some loose change might come in handy.
While I was in Addenbrooke's in Cambridge I had a lovely
lady by the name of Ann who took the money at the
beginning of the week and then each morning would buy me
a news paper and pass it in to me. Thanks Ann if ever
you read this.
Also take an old pair of slippers or bed socks that you
won't mind leaving behind. Each day you will of course
shower and have a change of clothes but the chances are
you'll wear the same slippers for the duration of your
stay. Come the time for you to leave it's highly likely
that the slippers will have become contaminated with
radiation and you'll not be able to take them home. So
unless you want to make a return trip you might just as
well let the the hospital dispose of the slippers.
FREE NHS PRESCRIPTIONS
Once you've had your thyroid removed and are dependent
therefore on thyroxine you are entitled to be exempt
from NHS prescription charges on the basis that you
condition is classed as a long term chronic illness. I
presume this also applies to those with an under active
thyroid. It's funny how no one in the health profession
will actually inform you of this! I found out by chance.
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RADIATION AND EYE PROBLEMS
A year after my last radioiodine treatment I started to have frequent eye infections and
watery eyes. Symptoms were investigated by several ophthalmologists
who all said the same thing; it was blepharitis and I
needed to clean my eyes with Bicarbonate of Soda, and
then all would be well.It wasn’t !
By asking my oncologist (instead of the GP) to refer me to an ophthalmologist, I
eventually found one that took my symptoms seriously and
actually wanted to find a cause for my watery/infected
eyes. The ophthalmologist investigated using the internet, and
found a link between radiation treatment (especially
radiation given to the upper body) and blockage of the
naso-lacrimal ducts, the main drainage channels for the
eyes that allow tears to drain into the nose and down
the throat. This was confirmed when he tried to syringe my tear duct on
the left and found it blocked.
By speaking to other cancer patients who had undergone radiation treatment, I found
some of them had the same symptoms as me - constant
watery eyes and conjunctivitis-like symptoms, which are
most unpleasant. The constant infections do nothing to help the blockage, and
actually make it worse. Steroid/antibiotic eye drops help for a while,
but for the main relief of symptoms the cancer sufferer
will need to undergo yet another operation – a
dacryocystorhinostomy. This is where the surgeon creates another duct
for the tears to drain into by (in my case) making an
incision in the side of the nose, taking out a small
piece of bone, and forming a new duct. Stenting tubes are left in place for a month
afterwards to keep the new channel open, and the patient
needs steroid/antibiotic eye drops also for a month
following the operation. With some patients the surgeon can perform the
operation internally via the nose if there is enough
room for him to work, so no incision needs to be made on
the outside. Relief of symptoms come with the removal of the stenting
tubes, allowing tears to drain properly through the new
channel.
I had my operation on July 14 on my left eye. It
was an external dacryocystorhinostomy, so I had an
incision and stitches. There was quite a bit of bruising and swelling
for the first week afterwards and tenderness around the
incision, but no real pain. I was not allowed any hot drinks for two days
afterwards, and I was not allowed to blow my nose for a
week in case of causing nosebleeds. I returned to work after two weeks, and was back
in the gym after three weeks (again, because of the risk
of nosebleeds no vigorous exercise for three weeks
afterwards).
Some patients who have not had an external
dacryocystorhinostomy and had their operation via the
nose, find that within a couple of years the symptoms
return. I have been told by my ophthalmologist that the external
(rather than the internal) dacryocystorhinostomy is the
‘gold standard’ and symptoms should not return. I will hopefully be able to confirm this in two
years’ time!
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