Pauline's Diary Page 2
CT, MRI and Ultrasound Scans - Making the Radiotherapy Mask and Mould
On this Head and Neck Cancer
Diary page 2 you will find:-
OTHER PAGES IN THIS DIARY
Wednesday 3rd July 2002
With the operation over I now moved onto a series of hospital
visits that investigated the whole of my body for suspicious masses. I took half the CT scan prescription the night before as
instructed.
Took the remainder of the scan prescription in the morning.
Went for the CT scan. It was not as bad as I had expected. I think I had it
confused with the MRI scan which came later. The CT scan was not intimidating,
but for all these scans you have to lie in a very precise way and keep very
still. A doctor injected a substance into me and a warm flush passed through my
pelvic region. It was a fairly simple set of scans compared to the MRI and most of the
time in there was spent in setting me up correctly.
I was glad to get home -
post op tiredness was setting in.
Saturday 6th July 2002
I spent the following days at home mostly in bed or pottering
around the kitchen in a nightdress. By Saturday I dressed. Everyday I felt better.
Sunday 7th July 2002
I woke up knowing my family were travelling up to visit me. So I
got up, bathed and washed my hair and put on make up for the first time in 10
days. I looked and felt better than I had for about 9 months. My skin looked
clear and fresh and my eyes bright. My hair fell into place and glowed with
health. I felt so much better now the lump had gone and the throat was healing. The scales revealed I'd lost about 12 pounds since my first visit to the
hospital.
Well eating had been off the agenda for some time, but on that
day I really looked forward to lunch. Eating for me was a slow experience, but I
enjoyed my food despite the throat still being a bit sore.
Monday 7th July 2002
Woke up about 6 am full of zest wanting to go clothes
shopping. Had a great time at the sales.
Woke up wanting to go shopping again <g>. But we had to go to
the hospital to have my dressing removed. The consultant said they found nothing
in the biopsies, but was alarmed that I had assumed that as the lump was removed
I was well, because I felt so well again. The word cancer still had not been mentioned,
but they continued to use the word carcinoma. So wanting everything
to be quite clear I said ' So what you're saying is that even though you've
removed the lump and I now feel so well, you think I still have cancer somewhere
in my body.
'Yes' he said 'and the CT scan has shown a small mass in the
region of your uterus and the mass is possibly a fibroid and I'll be contacting one of the
hospital Gynaecologists to examine you.'
He continued 'I want you to have an MRI head scan so we can
track where the cancer might exist as a primary site. The place it's most likely
to be is still the face and neck. It may be so small that its microscopic. It is
possible to have a microscopic primary site and a secondary larger site. I also want to arrange for
you see a head and neck radiotherapy oncologist in Cheltenham. I'll set all this
in motion' he said ' and see you in a month from now and write if we need to see
you before that if we have results.'
I left feeling devastated and crushed. I felt so well again,
this couldn't be so. My husband who could see the difference in me and my
vitality was convinced I was well. This is the problem, patients with
cancer often look very well.
I found myself again in the ENT room the following week with
about 6 people and the consultant. Some were dieticians, but the one I was to
see was from Cheltenham Oncology Department who explained about the
radiotherapy. She said I could have the radiotherapy on just my neck or on my
neck and face.
All the time I could see my ENT consultant observing my reaction. He
seemed anxious I thought, that I might reject this, as I am sure people sometimes
must do. I certainly hadn't agreed to anything yet, Google was going to be hit a
lot again. I asked the radiotherapy oncologist if she were having it done what would she opt for. She said both face and neck and explained that there was a good chance of a cure
when a person was healthy enough to cope with the radiotherapy early on rather than
have
radiotherapy in the late stages of disease.
As they both felt a microscopic primary site existed in the
neck or face they said there was a very strong chance that a noticeable primary
site would emerge within 5 years if the area was not treated now with
radiotherapy. In their experience this happened more often than not.
So despite my node surgery it seems I was still a patient with occult (hidden)
primary head and neck cancer and my radiation treatment sessions would be
planned to take account of that.
We then planned and agreed the next stage. If the MRI scan
found any masses then they would do a radical neck dissection followed by radiotherapy. If the MRI scan was clear they would just do the radiotherapy. He was surprised that
I'd not been sent an MRI date so that was arranged then. It turned out there
were people on holiday and so the department was only working mornings. At this
time I discovered that there is a general shortage of radiologists and
radiotherapists in the UK. There is often high tech equipment available bought
by government or charities, but no one
suitably qualified to operate it.
Another visit to the hospital and a doctor took a detailed report of my gynaecological history
and whilst waiting for the consultant I happened to read the letter upside down
that had been sent to the gynaecologist. I was very taken aback that the small
uterine mass mentioned was not so small, but a whopping 8cm. I
suppose it's all relevant. I have heard that fibroids can be like huge
grapefruits size wise and my own GP said he had seen one the size of a newborn.
The gynaecologist examined me and was convinced the mass was a
fibroid. He promised a pelvic scan for confirmation, but said that he would
review me in 4 months as I had enough to worry about in the forthcoming weeks
with the radiotherapy on the horizon.
By now I had an appointment for a pelvic ultrasound scan in an
effort to double check the fibroid was a fibroid.
Ladies this was an experience! After the general external
ultrasound over the abdominal and pelvic area which most women have had during
pregnancy I was told to relieve myself for the vaginal ultrasound examination. I
have never ever read about this or heard it from other women which is why I tell
it here. Reader the sonographer produced a long tube like baton attached to a wire
linked to the ultrasound machine. It must have been about 14/15 inches long and
then she proceeded to cover it with an equally long condom and KY jelly. She
then gently wiggled this around inside me looking for problems on her monitor.
It was almost amusing. She said ' you're very quiet '. I said
' I was just thinking what funny job to have ' and she said ' I sometimes think
that myself ' and we laughed heartily.
The thing I've found interesting about this during both a
mammogram and radiotherapy treatment when asked to do things which may be
embarrassing for some patients is that others in the medical profession often
seem to have no idea that this type of internal vaginal ultrasound scan exists,
which on a scale of embarrassment rates very highly alongside a barium enema.
She confirmed she too thought it was a fibroid, but that my
ovary was hidden by it, so she could not comment on the state of said ovary. I was
concerned about ovarian cancer, but have since learnt that the cancer cell type
they are looking for is all important.
There is a good link here showing a picture of the tools used
for a
vaginal ultrasound.
The day of the MRI scan dawned. I'd received a leaflet with
the appointment advising me not wear any make up especially mascara as this
contains fine metal particles, so I decided not to wear any make up the day
before either.
I found this a frightening experience despite being told by a
friend about the noise level involved and having read the leaflet provided.
On arrival they removed my handbag from me as magnetic strips
on credit cards, bag fasteners etc., can cause a problem. I also had to remove
my bra, but was allowed to wear my soft jersey trouser suit without fastenings,
rather than a gown. If you can wear your own soft unstructured clothes I advise
you to do so. It can be a cool experience lying absolutely still in a gown.
I was very nervous and told them this hoping for an injection
to calm me down, but no such luck. The operator assured me he would put on music
whilst the scan happened and that it would be very noisy. If I felt panicky I
could press the buzzer and they would stop the machine straightaway. He said it
would be about 20 minutes or until they had enough scans.
I was given ear plugs and then had ear muffs placed on top of
them and then found my shoulders and head gripped firmly in a cage like
structure that locked to the bed and that prevented general movement, Hannibal
Lecter style. This locking in and having your face caged does create a panicky
feeling. The operator showed me the periscope style mirror which was angled
above me and in which I could see other operating staff from behind a windowed
office and would be able to see them on the periscope when inside the scanner.
Various wires like aerials were attached at my chest level.
Then he pressed a lever and my body slid in. He had given me
one bit of advice beforehand and that was to keep my eyes shut. Well they were
shut and as I slid in I felt fine, but I made the big mistake of opening them to
check the periscope images and then I realised how enclosed I was in that tube.
Readers if you are to have an MRI scan soon keep those eyes tightly shut.
My heart began to beat very very rapidly at that point and I
wondered then if the wires on me, were monitoring me for a heart attack because
believe me it would not be difficult to have one when trapped in that tube!
The noise of various banging sounds was quite incredible and
beyond description. It's very, very, very loud and very, very close to you. Far
louder than you can ever imagine the noise to be. Try to imagine heavy clanging
of a dinner gong right next to your head in various pattern sequences that last
for what seems like minutes at a time. Another comparison would be like having a
road drill, drilling into metal very close to you echoing a metal sound that
heavily drones the word knock.
I kept telling myself to be calm, calm, calm and that I could
get through this. I thought be calm now just this once and they might say it had
gone well and it wouldn't have to be repeated for a fair while other than to do
scan comparisons. You learn to be as cooperative as possible so that a procedure
is done once only.
It seemed to last forever and when released and back in the
waiting room my husband said I had been over 45 minutes. Well I suspect that for
30-35 minutes I had been in the MRI machine as putting me in it had been very
quick. I can confirm it all felt like a very bad dream and I really was glad it
was over.
As for that music he forgot to put it on - so do take your own
CD so at least the operator thinks about it. I'm sure it would have helped to
create a time frame whilst lain down.
Of course one merely moves onto the next stage of the living
nightmare then, wondering what if they find something, what if they don't!
Scan Result - Tuesday 6th August 2002
This visit was my one month appointment I'd been given the
week after the surgery.
I don't believe they were expecting me as usual. The scan result wasn't
ready as a formal letter and so the consultant looked up the scans on the
computer. He was gone for about 20 minutes, but came back to feel my neck again
and said 'I think that's a vein, but if the report shows anything different I'll
write to you'.
The next stage would be radiotherapy probably in September.
Friday 9th August 2002
I had pondered this appointment at the back of my head all
week and on Friday I got a letter asking me to attend the following Tuesday. I
was concerned. Had they found something on the MRI scan and not immediately
interpreted it.
Saturday 10th August 2002
I had kept the news of cancer to myself and major family
members, but when an old schoolteacher former colleague and friend rang, I found
myself asking her to call round so we could chat better off the phone.
Once I had told her I knew the right decision was to tell
other people on my Christmas card list!
She seemed to think I was so accepting and calm about it.
I was not.
But by then I had known about if for some weeks and had become
used to the knowledge. It was hard not to cry with her. I valued her friendship
and I realised it was wrong to deny people the
opportunity to help when it would help them too.
What I had not bargained for was that some friends would tell
other ex colleagues and acquaintances and frankly I wish they hadn't. I felt
they broke the bounds of my confidence. In retrospect I would advise anyone in
this position to tell friends and advise them of mutual friends that know the
information, but ask them not to tell every single person they know. Phone calls
from people you've not seen in 10 years can be an inconvenience when you feel so
unwell and you are at a stage when it's hard to talk even to the close people
you want to speak with.
The next stage was to be radiotherapy and the same friend
travelled with me for an appointment where the radiotherapy consultant told me
that there would be great intense throat pain, a very dry mouth and poor saliva flow
as well as burning of the neck during treatment.
I came away with the impression that whilst the external
burning would look like bad sunburn, the internal burning would be severe and
affect my taste buds and saliva flow. She was reassuring in that she thought
hair loss might be minimal. When your life is in jeopardy it might seem vain to
worry about hair loss, but worry I did. I think every woman does and many men
too.
That day they made my mask shell. My husband was with me and if
you need a mask to be made, if possible do take someone close to you, with you. Having the mask made is very
unpleasant experience. It is of course tolerable, but that did not make me like
the experience.
First your hair is wrapped in clear plastic cling film to
protect it from the plaster. Then you lie on a medical couch and icy cold damp
mobile dental plaster is poured all over your face. Remember to shut your eyes
fast. I was holding my husband's hand and he squeezed it often which helped
soothe me. As the thick dental paste which is a bit like thick, viscous, very cold
emulsion paint runs over your face, the radiotherapists manipulate it by hand so
that it does not go into your nostrils or over your lips/mouth. Somehow when its
happening to you, you can't help feeling it will enter the orifices - and it is
claustrophobic thinking it will fill the very holes you breathe through.
My mask came well down over my collarbone and over my cleavage. When the dental paste part is complete they then dip plaster of Paris bandage lengths into
water and place those over the dental plaster which has taken on your face
shape. They gradually build up the plaster strips whilst moulding them to your
facial contours. The plaster of Paris begins to heat up and it gets quite warm
as it hardens. The weight of the mask begins to feel heavier and heavier and
quite solid. It really is not pleasant, but it is tolerable. I kept telling
myself to be calm and be still - after all it's best to suffer once rather
than fidget and need it doing twice. I would compare the experience as
unpleasant as having the MRI head scan - both undesirable moments in life,
although both quite different.
I whimpered frequently like a child during this procedure and
I never ever want it done again. They threatened to make a new one about my
fifth week because I had lost so much weight and it wasn't fitting so well on my
bust, but I made it clear I would refuse. Having this mask shell made was one of
the most claustrophobic experiences I have ever experienced. You might find it
quite ok, but most people I met were glad it was likely to be a one off event.
I
don't want to frighten anyone - it is tolerable.
After a total of about 20 minutes the mask mould hardened and
they simply lifted it off using strong pressure. What a great relief that was. The therapists then proceeded to set my mould up over a sink and pour plaster
into the negative area where my face had been. That would produce a plaster
image of my face that they could mould a thin Perspex type clear plastic
material around the negative image to make
my clear mask that would fit over my face and décolleté.
I hated this procedure, but forewarned is forearmed. Have
someone hold your hand and chat to you or insist that someone from the
department can be beside you to comfort you and keep chatting that everything is
ok for you and that you are doing well just like a dentist does when he treats
you. You feel very cut off from the world when that mould is on you. It seemed
to me at this point that having Cancer takes away all your control.
~
 My mask was made and I went to be fitted for the measurements
on the simulator machine. The clear Perspex mask has eye holes, nose and mouth
cut out and that does help a bit with the claustrophobia. Notice the small bolt
at the mask side and which screws to the table.
Left - Picture of clear head shell for radiotherapy When you lay on the simulator bed it's a good idea to put your
hands under your bottom, that way you don't fiddle or move so easily. The mask
is then bolted to the bed. Don't try to rise up in the mask - you just get
nearer the Perspex shell not free of the mask!
When on the simulator bed you have to lay super still, so that precise measurements to
the half millimetre can be made. In my case this took about an hour on all three
occasions, because half way through, the measurements had to changed as things
were not working quite right with the laser beam and the mask. Believe me that
is a very long time to have your head bolted to a hard table and have to lie
still too.
The simulator replicates the X ray treatment machines, but can
take X-rays for diagnostic purposes. They take loads of X-rays using little lead
strips of metal to get the placement of the mask marking exactly so. Marks are
made on the mask in felt pen. Meanwhile they record
measurements on the computer to retain accurate radiotherapy sessions every time
when on the real machine.
2 weeks later my radiotherapy treatment actually began. On
that day I had to have the mask re-measured all over again as they said I had
relaxed!!!
Several days later they did exactly the same thing again! You
just have to tell yourself that it really is for your own benefit and that the
therapists are trying to give you the most accurate placement of X-ray dosage. But believe me an hour on that table is like a lifetime. Have a drink of water
beforehand and go to the lavatory first.
Footnote 1:- 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.
Head & Neck Cancer Diary & Radiotherapy After Effects
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