6-15-1945 / Class of '96 / Type: solitary plasmacytoma
/ Last Update: 9/00
My name is Sandra Smith. I live in Tasmania which is a State of Australia. It
is a small island that lies of the southern coast of the mainland, next stop
I live in Devonport which is situated on the north west coast. My home has
large windows along the front and they all face out across Bass Strait and so I
am flooded with sunlight from the north which is the best position to be in down
under. I am a school teacher. At 52 yrs of age I have been teaching for 32 years
in a variety of situations ranging from the teaching of Adult Migrants through
to Early Childhood and infant classes where I am teaching at present in a small
three teacher country school. My husband, Adrian used to teach also but gave it
away a few years ago to take up Pest Control with his brother. (swapping one lot
of pests for another, so he says) While we both taught we managed to move around
from Australia, to Papua New Guinea (one of the world's last frontiers) to
Vanuatu (of James Mitchener fame) to the Northern Territory of Australia (as in
Crocodile Dundee) through other mainland states and finally home to the state of
my husband's childhood, Tasmania. I grew up in N.Z. and left there to come to
Australia as a 17 year old. I go back frequently but have never lived there
since the early 1960s.
I grew up in an orcharding and grapegrowing area. There would have been a lot
of sprays on the air. I have always been well and strong and have had very few
sick days in my working life. I have always been very allergic to insect bites
however and got a severe reaction to a paper wasp sting in the tropics which I
thought would take my life.
I had glandular fever when I was about 12 yo. Apart from that my surgical
adventures did not start until after I had my two children and all of them
related to the plumbing problems many women are forced to deal with in life.
(e.g. hysterectomy, cystectomies, cystitis etc.) the latter problem was ongoing
and involved LOTS of strong antibiotics.)
About 8 years ago (1989) I noticed that I was having a lot of trouble with a
blocked tear duct. I put up with it until I got sick of it and in 1993 I went in
to have it repaired. The Doctor seemed not to worry about why it was happening,
he just repaired it.
Three years later (1996) I noticed the lump was back in the same place.
However, this time when I pressed it, nothing came out of the tear duct. The
lump didn't hurt but was growing a little bigger over time and I decided I
should go back to the eye Dr to have it looked at again. The original Dr had
retired so a new Dr looked at it briefly and sent me of for a CAT scan. The
result of that was the following: Mass lesion with bone erosion in left inferior
medial aspect of left orbit, quite suspicious of tumour mass. 18/10/96.
I was then sent to an ENT specialist who wanted to operate immediately but I
was anxious for a second opinion and organised through my GP and a Dr friend, in
Sydney, to fly to there and consult an ENT specialist. In the meantime, I had an
MRI scan and that said the following -
Signal characteristics suggest that the lesion is solid rather than cystic.
CT and MRI features favour a benign process? granulomatous lesion however,
malignancy is not excluded and histological evaluation should be considered.
So, due to the fact I had a solid mass measuring about 1.5 cm between the
nasal septum and left eyeball and that bone erosion involving the inferior
aspect of left anterior ethymoid sinus, medial inferior wall of left orbit and
left side of nasal bone was evident and that the mass was noted protruding into
the left orbit, I was told I should present myself for a biopsy. I did this on
January 30th, 1997 at the Royal Prince Alfred Hospital in Sydney. I notice now
that Doctor Joshua is based there but at this time, of course, I had not heard
of him, nor of MM and was hoping for something far less sinister to be the cause
of my troubles.
However, that was not to be. They operated on the side of my nose, they
excised the tumour, sent it off for examination and the result was that I was
told I had a solitary plasmacytoma. At that time my Doctor friend sent me the
address of the Multiple Myeloma Foundation to which I wrote immediately and
found all of you lovely people out there in the ether who were JUST SO IMPORTANT
and PRECIOUS to me at that time because you all KNEW how I was feeling and you
also had heaps of good advice and encouragement and were so bravely baring up
under the burden of your own situations.
I was referred to an oncologist here in Tasmania. He is not an MM specialist
and as far as I know there isn't one anywhere but in Sydney. (two hours
expensive flying time from here) He referred me on to a radiologist / oncologist
who put me on a waiting list for 25 lots of radiation. I had to wait till the
week after Easter '97 to complete my treatments. I lived away from home through
the week because it was too far to drive back and forth every day and I didn't
want to bug people to take me.
I have spent all the time since the treatment finished trying to claw my way
back to normalcy. I found the treatment far more upsetting than I expected.
Apart from what it did to the skin on my face, the way my eyes swelled, my
eyebrows half disappeared, two great blocks of hair were blasted off the back of
my head, the skin fell off my nose in great hunks, the internal environment of
my nose became raw and bleeding and my sinuses all blocked up, I found I
couldn't stand the smell of the environment, I couldn't bear the taste of food,
made myself eat fruit, soups and vegetable stews for health reasons but even
those left me feeling unwell. I never actually vomited but felt nauseous all the
time. The psychological warfare of attending the radiation clinic in a public
hospital and being a blue card carrying member of the cancer club/cattle call
was horrendous. There was no psychological support offered. The radiologists
were run off their feet and made cursory enquiries as to one's health (but had
no time to listen to answers) the weekly visit to the Dr who was overworked and
harassed looking, didn't invite one to open up so the feelings of loneliness,
fear, isolation, panic, anger, etc were never really given a chance to be aired
and worked through. I felt so sorry to all the elderly and inarticulate and non
assertive fellow sufferers who sat on the yellow vinyl chairs with me, isolated
in their cocoon of suffering, who didn't have access to chatting to all of you
on the internet once a week, at that time like I did. I will write a paper to
the board of directors who run that particular unit as my gift to those who come
behind. Possibly they will see their way clear to offer some sort of counseling
support once a week for people???????
Sorry, I got sidetracked. Here in Australia we don't get access to our paper
I haven't tested the system yet by kicking up a fuss. We do have a Freedom of
Information Act, but it seems it doesn't include Doctors??? At this point I am
now waiting to go back to the oncologist and find out Where to now? My blood,
urine, bone marrow, skeletal survey revealed nothing before the treatment. What
will happen when I'm tested again I don't know but will keep the list posted.
August 22, 2000: So far so good? I think! With every subsequent blood and urine
test coming up clear I began to relax. I went and had a bone-marrow
harvest in the Royal Hobart Hospital in July 1998. After that I attended
a IMF Patient and Dr. Seminar in Sydney in October, 1999. It was great
to meet up with people who were just names or photos in the IMF Magazine.
As a result of that visit I felt that I would like to make contact with the
Haematologist/Oncologist in Hobart for a chat about 'Where to from
here?" I had to ask my G.P. for a referral. All I got for my
pains was a lecture about how I should let go of the past and live for today
and for the future. If I got any further symptoms I would be for the 'high
so why would I want to find out anything else. Apart from that, in his opinion
I would die of a heart attack before ever I died of Myeloma, due to the fact
that I have hypertension and am overweight!!!!
I felt somewhat devastated by this unexpectedly vehement attack and
determined to rid myself of his services. However, we have MM History
which I can't bear to go over with anyone else and it is TRUE I will probably
die of a heart attack so I have to confess that as of the year 2000 I have
adopted a head-in-the-sand attitude and am madly traveling and having a
wonderful time (which includes eating) and will try not to think about
reoccurrences until such time as I am forced to.