- by Diane Williamshttp://blog.lungevity.org/2011/03/14/survivorship/
Survivorship means to me – living as well as you can, and enjoying life to the fullest, for as long as you are able.
I was first diagnosed in March, 1998 and again with a new lung cancer in November, 2008.
In 1998, I was diagnosed at stage 2A. I had surgery (left lung removed), and no chemo or radiation. I inquired about chemo or radiation, but was told by the doctors that it would not be a good idea.
In 2008, I was diagnosed at stage 3B. I had concurrent chemo/radiation. I started with Cisplatin/Etoposide, but could not tolerate it. Chemo was changed to Carbo/Taxol.
After surgery in 1998, I did very well with one lung. It took about a year to really adjust, but with only a few exceptions I could do what I had been able to do before.
In 2008, I had severe side effects with the Cisplatin. I did much better with the Carboplatin. My red blood cell counts got very low. I had a loss of appetite, but still managed to gain 15 pounds by eating lots of peanut butter, which seemed to be the one thing that agreed with me. Lost my hair, had severe fatigue, but got through it.
I was lucky. My husband was self-employed and so was able to take some time off. My daughter-in-law also was a great help. I don’t know how I would have managed without them.
There is no support group in my area, nor really any useful resources. The best resources I have found are LUNGevity and GRACE.
I would really like to have a lung cancer support group locally.
After I returned to work following surgery in 1998, one person told me that she had no sympathy because it was my own fault. Most people were polite enough not to come right out and say that, but you could tell that is what they were thinking. I have learned to basically ignore it. If they seem receptive, I try to point out that there are people dealing with lung cancer who never smoked, and that in the case of those who did smoke, the tobacco companies have a great deal of responsibility in getting young people (I was 13 when I started smoking) hooked on nicotine. I’ve found that with people who are not receptive and have made up their mind, there’s just not much you can say.
Lung cancer truly teaches you to live in the moment, enjoy today, and not worry so much about tomorrow. It also reminds you to be grateful for what you have, as you see so many who have it much worse.
For me, because I was a smoker, the worst thing has been seeing how my illness has affected my family. I can remember telling them that it was “my business if I wanted to smoke” – well that’s not true. It has affected everyone in the family, but obviously my husband the most. Although I am doing well right now, I know he worries about my becoming sick again. So the concern is always there. Also, my breathing problems have a definite effect on our lifestyle. He is active and in good health, so it really makes me feel bad that there are so many things we aren’t able to do.
I want to tell people that lung cancer can happen to anyone, and there needs to be much better screening methods, as well as more effective treatments. I want to make sure they understand that no one deserves lung cancer, and that it could be your sister, brother, husband or child. I want them to understand that many people who did smoke were addicted to the nicotine by the tobacco companies, and others only smoked for a short time years prior. You cannot blame anyone for their disease – it does no one any service. If smoking were the only cause of lung cancer, then all smokers would have the disease – actually the majority of smokers do not get lung cancer. I would point out the many environmental factors and the problem with Radon, which many people are not aware of.
Although we are doing more for cancer research all the time, it is still not enough. There needs to be much more research done because the survival rates of lung cancer have not changed much in the past 40 years and more people will die from this disease if we don’t make sure there is enough funding for more Research.