Life Changes - A Wake Up Call
A Cancer Diagnosis & Treatment
This web diary
is not about fashion, but about my treatment for occult primary head neck cancer
(Squamous Cell Carcinoma or SCC).
So be warned now, these pages may not be for you, or to
your taste and is indeed totally self indulgent and primarily written to
update
my relatives, friends and those who email me. It is also for others facing a similar life
threatening situation. You are welcome to read it, but remember it's not a fashion diary so please don't email
me complaining about that.
In a way this record will be about concepts of beauty
and how we as individuals cope with possible change to our personal
features literally in the face of facial illness. In my case this is having undiagnosed
(occult/hidden) primary
site head and neck cancer which is unusual in a lifelong NON smoker. I'm writing this because I have found the few
detailed diary style pages that exist about head and neck cancer, have
helped me come to terms with aspects of the treatment and to deal with
questions left unanswered by medics, or which seem almost too trifling to
enquire about. This page is a long preamble
about a side neck lump, my fine needle aspiration and SCC diagnosis,
followed by other pages on surgery, MRI and CT
body scans plus 3 detailed pages with
images of
radiotherapy events . The last page is about post treatment taste
problems. This page was initially
written on 8th Sept 2002. On this Head and Neck Cancer Diary page 1 you will find:-
Click below to go to other related pages:-
(This page is the original page written in 2002, although some facts have now
changed.)
At the end of 2000 I made a decision to build this website
fashion-era.com and spent most of the year 2001 writing and organising the site as
well as learning new software techniques. You can read fully about this in the
about us section. As the year 2001 passed I began to get tired. Anyone over 50 knows
this feeling, you begin to think 'I don't have the energy I used to have; nor
the inclination to do things that have been done before; the HRT is not working
as well as it used to and why can't I do anything with my hair and why does my
make up look so strange when it should look ok; I must be getting
older.........'. By November 2001 I felt more and more off colour and stopped
wanting to go shopping and window shopping, something I've always loved. By January 2002 the seasonal sales held no attraction and I found
it hard to get out of bed in the morning. I had always got up with my husband to
see him off to work. With daily commuter travel, he was rising early regularly at about 6 a.m., but that had never
been a problem for me before. Now it was taking me an hour to come round and
very often as he left the house I'd go back to sleep, something I'd never done
before. My sleep rates increased alarmingly from needing about 5 or 6 hours
nightly to 12 or 13 hours, plus a nap of an hour or two only a few
hours after rising. I was more than happy to be in bed by 8 or 9pm to
accommodate his early morning travel. To be honest it's only in retrospect that you see a pattern. I
really never took much notice of it as I work from home, working in our home IT
business and create new pages and e-books for fashion-era.com one of our
websites. Beats my old job of teaching <g>. I put most of it down to it being jaded through winter, which always makes the
arthritis in my neck vertebrae and residual jaw pain from a major dental
operation 21 years ago, more painful and sore. What happens is that one day you
feel off colour and the next day you feel just 1% worse, and the following day
just 1% worse again and you continue to do daily tasks somehow, but perhaps more
slowly or reluctantly, until you begin to think that how you feel is the way you
feel when you are well. If anyone asked me, I would say I felt well and I did
because I had forgotten what being really well and feeling full of vitality felt
like. Now I recall that I had about 4 nosebleeds in the past year, but just
thought my blood pressure was up again. This now turns out to be a possible
symptom in my case. Every symptom that might have pointed to the disease I saw my
doctor about in the 18 months before diagnosis. On their own the symptoms were
meaningless, but in the long term put together a pattern emerges. One
symptom was a pain in my armpit that began to wake me at night. A female doctor
examined my breasts, said they were ok, but nodular, but thought leaving off my
bra when possible might help with the armpit pain and it did for a short while.
I think now this was some kind of lymph gland warning.
»
Back in late February 2002 a few weeks after I launched the
fashion-era.com website I was sat one night at the computer having just had a
rather warm bath and was settling down to surf for an hour before bed, when I
noticed a small lump jump out from deep within my side neck and just below my
jaw line. It refused to be pushed back from where it came. When I say small, I do mean small, like a little firm mobile
lentil under the surface of the skin. As small as a Tic-Tac sweet. I was aware that lumps in the neck could be dangerous because
my father had had Hodgkin's disease which begins with lumps in the neck and
which culminated in Lymphatic Leukaemia some 45 years ago. My mother though told me
his lumps
were much much larger lumps and the specialist I saw later also confirmed this.
I observed the lump for some weeks and there came a point when I made a visit to
my local GP around Easter time when the lump was very slightly bigger. The
doctor I saw did not seem overly concerned, I was more concerned than him, but
he did arrange for me to have a blood test for a full blood count. The blood test revealed some evidence of "slight"
inflammation, but it was difficult to know whether the inflammation was related to the
osteoarthritis in my cervical vertebrae or some new problem. Without going into too much detail the lump suddenly doubled
in size, but it was about a further 5 weeks before a new young doctor at the
general practice
said he thought I should see an ENT specialist at the new hospital in
Worcestershire. That was a Friday morning. A few days later on the following
Monday morning I had a letter from the hospital offering me an appointment a
week later and then I really began to worry. I realised the doctor had
phoned for that appointment on the Friday because he too was very suspicious about it.
My experience has been that the UK National Health Service
works fast when it's worried and I see now that the NHS regards some illnesses
as very low priority when they affect the quality of life, rather than threaten
it. I fretted the whole week and made matters worse mentally by
spending hours keying phrases like 'side neck lump', 'neck gland swelling'
and 'neck cancer' etc into Google. This threw up every possibility and frankly very few
diagnoses were good.
Whatever this was, it would either be harmless or really bad news. It was about
85% likely to be bad news.
My husband was free to go with me to the hospital and I was
glad of this. I saw a doctor who was very quiet, but obviously as it turned out
very efficient. He sprayed my nasal passages with local anaesthetic and then
passed a fine camera about the thickness of a fine electric cable down my nose and throat.
This is uncomfortable rather than unbearable and my experience suggests that the
discomfort is in relation to who does this. He couldn't see anything untoward on
the computer monitor and
seemed mystified. I then heard him tell the nursing sister to arrange an FNA for the
afternoon. My heart leapt. I'd read about fine needle aspirations in my
Google researching and frankly I didn't much fancy it. It also meant I knew they
were looking for something sinister. This was reinforced by them being surprised
that I had not received chemotherapy for the removal of a so called benign
lymphoma on my clavicle some 17 years ago. There is no such thing as a 'benign lymphoma' I was told that
day, not once, but repeatedly. I could only tell them it was what I
had been told. It never gave me any trouble after surgery, but what worried
me now was the curiosity and genuine surprise shown that I had not received chemotherapy for it. The FNA was painful in my case. They apply a spray to freeze the skin,
but frankly you can feel something as they draw out fluid from the lump via the
needle which is not quite as fine as I expected! They do it not once, but twice
to be sure they get enough cells and to get the cells they wiggle it. The doctor
said some people find it more uncomfortable than others. Maybe I found it
uncomfortable because my lump was still quite small. And then you wait in fear for a week wondering
every possible thing imaginable. My instinct told me I might be spending more time in my
bedroom, so I used the week to go get fabric to make new curtains, buy new
matching bed linen and emulsion
to decorate the master bedroom a wonderful
soothing lilac colour.
During the week I had tried not to look at Google anymore and
I noticed my appetite was slowing down as the prospect of what it might be
dawned. I packed a small overnight case with all the things I might need if I
had to go to hospital quickly. I think I may have done it as a kind of insurance
policy hoping it would not be needed, whilst telling myself that my husband
would be like any man and be unable to find all the girly things a woman needs.
What woman can manage without her hair and face products peculiar to her skin
and hair type. My husband was working in Nottingham that day and so I went alone
to my 3pm appointment which was running about 2 hours late. In retrospect
I suspect they keep till last news for patients that's bad, so they can spend adequate
time explaining to you. I was called in to see the ENT consultant and was taken aback that
there were about 5 people in the room including a lovely motherly nurse
practitioner who kept
stroking my shoulder as if to comfort me. The consultant examined me with his
hands on my throat and with his
throat camera and I kept thinking why doesn't he tell me the FNA test was ok.
Then I realised he had asked me about 3 times if my husband was with me.
- Indeed was anyone with me?
- Did I have a friend with me?
- Did I have children?
- Questions like that make you wonder.
- You had a tonsillectomy at 21?
- And you have never ever smoked?
Then suddenly he said 'Unfortunately the fine needle
aspiration showed evidence of Squamous Cell Carcinoma and I'm going to operate
on you under general anaesthetic to remove the lump next Tuesday morning.'
He never used the word cancer once, but I understood fully the
implications of what he had said. 'Carcinoma, carcinoma, carcinoma' was what I
heard. The nurse practitioner asked me if I
understood and I nodded and then he said there was hope, sometimes the cells are
not what they seem in an FNA and only a biopsy of the lump can confirm the type
of cell. I asked what caused Squamous Cell Carcinoma and as a
generalization he said he about
90% was caused by smoking and they were indeed puzzled because I was a lifelong
non smoker and from the fact that I had had both a cervical smear and a
mammogram in the previous 18 months along with very clear skin, the consultant
implied it sounded as if I looked after myself from a health point of view. He
used the phrase 'unfortunate'. He went on to tell me that the cell type is associated with
the linings of the body and orifices of the head and neck in particular. He drew his fingers around his
face from his cheekbones to the base of his neckline. My lone visible lump was also unlikely to be the
primary site. The position of the lump indicated it was possibly a secondary
site and that the main site was elsewhere in my body. More than likely in my
face or throat and they would possibly locate it when operating, but could be at some other site where the same
Squamous cell type
sometimes appeared. I knew exactly the cancer he was talking of. A neighbour of my
mothers had some of her face removed some 25 years ago. She is still alive
today, but lives with facial deformity despite some corrective surgery. When I had my dental jaw operation an
elderly woman in the next bed also had the roof of her mouth removed and six
months later rebuilt. Her dentist had examined her the previous day and saw the
mouth tissue and sent her immediately to the hospital and they acted promptly.
I've always had regular dental checks just for this examination, so it's another
frustration along with the having never smoked issue. Being aware of a problem
does not prevent you having a similar problem at some time in your life.
I did ask some questions, but it's all a blur really now. I
think they were about Hodgkin's disease and leukaemia, thinking there might be a
genetic connection via my father, but was told that both of those diseases would be more easily
treatable. I liked the man and felt confident that the multidisciplinary team
had acted quickly to assess my case. I was ushered to the nurse practitioner's room and she was so
motherly and so serious about it all (she knows more than me I thought) that it really hit me away from the male doctors and I found myself having a
weep. By this time it was 5.45pm and as I exited the hospital my husband drew up
outside the entrance. I was so glad to see him and whimpered in mental torture
rather than cried as we drove home. SCC - I had SCC was all I could think. When we got home I repeated exactly what I had been told. I
felt so sad for him as he is a lovely man. In the middle of the night I woke up
in alarm with the thought 'I have cancer' running in my brain. For days, even
weeks the thought runs in your brain and wakes you at night however much you
tell it to go away. I think I woke up like this on and off for a month or so
after being told. Some evenings I might just manage to forget about it and then
one of the few people who knew would ring me and I'd find myself reminded all
over again. For 3 or 4 days after the consultation I had no appetite at
all and could only drink the odd cup of tea or glass of water. Since the FNA,
the lump which had not been painful before had become sore and doubled again in size
from the FNA bruising. Even so it was still only the size of a grape externally and still not
protruding above the skin level so was barely noticeable to others unless I
pointed it out to them. Now I began to look unwell. So now there were
real physical symptoms appearing. Now I seemed to have a red rash all over my neck to
my thymus as well - I just wanted that lump out. Next Tuesday could not come
fast enough. The following day the ENT secretary rang to say my operation
ward was Beech Ward and to report there at 7.30am the following Tuesday,
starving myself from midnight Monday. Starving was not going to be a problem.
Food is the last thing on your mind when you get this diagnosis even if you love
food as I do.
˚
We arrived promptly and by 8.30 a.m. I was in my bed and the
consultant already on his pre op round was explaining to my husband the facts as
he had explained them to me. He also told us he would be taking some biopsies
from the mouth, nose and throat area in the hope of finding the primary site. To help them find
evidence of spread elsewhere, I was sent there and then for a liver ultrasound
scan and a chest X- ray. These revealed nothing of significance. I was
sent with my file on my lap as a porter wheeled me to clinics. The whole experience only served to upset me as it's difficult
not to take a look and seeing words like acute and urgent all over hospital documentation
throws you for six. He asked me if by any chance the lump had disappeared. I found
this an interesting question. Obviously such lumps must disappear in some cases.
But nope, mine was still very firmly hanging on in there. By 10.30 blood tests had been done and a bit later I was wheeled to the
operating theatre. The hospital is brand new and was opened in March 2002. I
don't know why it should, but a brand new clean hospital fills you with greater
confidence than an old Victorian workhouse building however great the care. When I woke up I had on an oxygen mask which remained on for
12 hours and I came around
faster than ever before after a general anaesthetic. It was 21 years since my
last general anaesthetic so I was amazed at how fast I came round. I also
noticed I was not given a pre-med injection as previously, so maybe lack of an
extra sedative helps you come around feeling less zonked. Since then I've
discovered that huge advances have been made in the administration of anaesthetic
drugs in the past 15 years. Later in the evening I
did feel dizzy as the effects came back, but recovery was swift. The consultant said they had taken 6
biopsies from the nose, mouth and throat and would have pathology tests back at
my next appointment. My throat felt very sore. On the side where the lump was
removed the soreness reminded me of a one sided tonsillectomy operation. Modern
materials were used to hold the bulk of the incision together. Only one stitch
was placed centrally, the rest held by tape. Weeks later I suspected some kind
of glue had been used as a fine hair like substance sometimes came away from it. The following afternoon I was discharged. On the way
out we picked up a prescription drink for me to have a CT body scan on the
coming Thursday. Once home I spent time immediately surfing looking up CT scans.
I felt very
wary of this procedure. Read more about the CT
Scan, the MRI scan and the Pelvic Ultrasound here. Read about
the
mould and mask for radiotherapy being made here.
Home - wonderful. I can tell you there is nothing quite
like your own bed for comfort.
Click below to go to related pages:-
Head & Neck Cancer Diary & Radiotherapy After Effects
Click below to go to other related
pages:-
Links
|
