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Sandra Smith
09.01.00
Devonport, Tasmania; sasmith@smallbusiness.net.au

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 Antarctica.

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 work.

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 jump' 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.


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