Hello,
My name is Marilyn, and I'm from British Columbia, Canada. A few weeks ago I was a happy professional woman (an ex-smoker )looking forward to a few more years of work and then an adequate retirement with hopefully some travel. I, however, had a nagging persistent cough which led to a series of misdiagnoses, including, sinus, GERD etc. At MY insistance, a lung XRAY was taken, and my carefully planned world fell apart. Within a couple of weeks I was told I was "terminal" and should get my affairs in order: Stage 4 Non Small Cell (Squamous) Carcinoma. My scans read like nightmares: A 2x3 mass at the right lung apex and a subadjacent
1x2cm mass joined by 10-12 subtissue densities within the right upper lobe and including the upper margin of the right hilium and upper anterior mediastinum. There is atelectasis at the medial right upper lobe with involvement of the right pulmonary artery. A 2.2 cm mass within the adrenal gland and 2.0 cm mass in the right femur were picked up, and firmly placed me at Stage 4.
In British Columbia, there is tight control and direction provided through the BC Cancer Agency with its strict protocols. I am stamped with the label "palliative" and there are platitudes about my "quality of life".
I had to leave a demanding job,and since I live alone suffer from loneliness.
To date, I have received radiation for my right femur at my insistance, and two weeks of radiation to reduce the tumour in the right lung and palliate my cough. I have begun 4
cyles of chemo (carboplatin and vinorelbine). I am lucky so far in that side effects are few except for terrible FATIGUE. I attend a support group once a week, go to an acupuncturist once a week, and have begun work with a clinical psych. once a week- all at my expense.I have done internet searches for alternative therapies and my head is spinning, just spinning. The oncologists here are opposed to naturapathic and alternative medicines.
The statistics are horrible: 20% live a year, median survival time for stage 4 is 8 months. I would like to do well despite the terrible odds and buy as much good time as possible. The Doctors Doom and Gloom feel its their duty to level with us on the dark side, particularly if any of us appear to look hopeful. It is devestating to meet with one of them.
Why would I go through unpleasant therapies if there is little hope???
So here I am, looking for hope and any helpful information people may have.
Thank you so much for reading this.I look forward to hearing from you.
Marilyn (mguttman@shaw.ca)
