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| Date Entered at Shared Experience: 07/21/2005 |
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UTERINE |
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Stage IIb (involves cervix), Type 1 (slow-growing, less aggressive) cells |
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none |
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Hysterectomy (uterus, tubes, ovaries and 23 lymph nodes)
Three internal, high dose radiation treatments |
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Physically, I have recovered from the surgery (6 months ago) and radiation treatments (2 months ago) very, very well. Although I went into the surgery quite depleted, for unrelated reasons, and although I found the surgery experience quite traumatic emotionally, I was walking the first afternoon, continued to get up and walk as much as possible, and was able to come home on the third day after the surgery. I continued to get as much rest as I needed (help with housekeeping) and to walk as able. Within six weeks I was back to my usual routines and exercise regimens. Now (6 mos. later) I am running about 4-5 miles 5 times per week without comlication. My scar was tender in a few spots for a while. It would get uncomfortable when I raked my yard, for instance. But now I barely notice it. Since I was not menopausal before the surgery, I continue to deal with hot flashes, which I find bothersome but not that limiting, and vagial dryness, which I have to say is somewhat of a relief after five whole years of constant blood and mucous. (I use KY jelly when needed.) Sometimes I worry about libido issues, but this is such a comlicated thing to figure out that I am not ready to say where I've landed yet.
The radiation therapy (2 months ago) was more uncomfortable and more traumatizing than I had anticipated, and I am experiencing some sexual side effects, despite the regular use of a vaginal dilator to prevent stenosis. During intercourse, my vagina simply feels more limited--either actually shorter, or at least much less elastic, and I am still struggling with some pain. My husband and I are patient and flexible, though, so I am quite hopeful that this will improve.
Emotionally, I can be quite fragile over the changes and struggle to feel "like myself." As I mentioned, I found the surgery experience to be quite traumatizing. I had never had any surgery before, and this may account for my not feeling prepared. As well, doctors may not have felt it necessary to prepare a 50-year-old as carefully as they might have a 5-year-old going in for a first surgery, so there were a lot of surprises for me. For instance, after the basic intake procedures, I was given Valium and the wheeled into a surgery waiting area, where I finally met the anesthetist. He was very nice, but I was barely awake, and he was asking me to make decisions about my pain medication. I opted for the least intrusive, since I hadn't been told to consider an epidural or other possibilities. I felt this was poor communication and management on their part. I hated being in a large room with about ten other worried people who were waiting for surgery. I desperately wanted more privacy. This was another thing I hadn't anticipated. And I didn't know I would still be conscious when they wheeled me into the actualy surgery. I found this disconcerting. It was weird having them fasten down my arms, while they talked to me through surgical masks. In retrospect, I think I should have asked to be unconscious before this. These were weird last images. I didn't know some of the routine procedures--like catherization, which I found very uncomfortable, and shaving, which really burned.
Hospital personnel were competent and kind, but I felt completely like a non-person while there and couldn't think about anything except getting home as soon as possible. The surgery has ended up feeling violent and terrifying to me, which made facing the intrusive procedures of the internal radiation really difficult. Sex has not been comletely impossible in the wake of all this, but it, too, suffers from these impersonal feeling intrusions. I am very, very protective of my body at this point. I have a long-trusted therapist who is helping me get back on track. I worry that another necessary surgery would be almost impossible to face unless I find a more positive way to see this experience.
The surgery and radiation have brought a lot of changes that I haven't quite integrated yet, and I'm not seeing the light at the end of the tunnel yet. I feel sad about leaving behind an old self--a child-bearing self, a self who was relatively carefree about sex, a self who had managed without a lot of medical intervention, a self whose maintenance routines were pretty basic and not that time-consuming, let alone the cancer-free self. There's just a lot of adjusting which I'm still in the midst of. |
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My surgeon gave me very good basic information. I did a lot of reading about the sudden hormone drop (Christianne Northrup--Women's Wisdom--for one). I called my ob/gyn about the hormones a couple of times to reassure myself before the surgery. I read a lot about the basic disease, the surgery and the radiation on the Internet. I tried to be careful to stick to respected resources. I started with WebMD a lot.
I tried to limit how much I took in. I didn't tell everyone I saw about my illness, because I knew I could be overwhelmed by other people's personal (let alone second hand) experiences. I told a few peole very close to me. I tried to stop reading when I realized anything was just scaring me. I found I had to limit the bad news stories. I knew I might get some bad news, but I just wanted it to be mine and not ten other people's. So just before the surgery, and until I got my surgery labs results, I stopped going to support websites where I would invariably run into discouragin stories. I think people who have easier experiences just never follow up with their tales in these places. It's the people who have a real struggle to survive who keep going there (and who should). So you get a kind of skewed picture. Along these lines, I did not appreciate the Hospice lady who routinely came around offering resources at the hospital. I just wasn't ready to think about this the morning after my surgery. Nor was I ready to have people with much more serious cancers than I had say to me "We are in the same boat." I know they meant well, and they deserve to be involved in encouraging people. It was just me. I wasn't ready to consider this possibility--that I would need Hospice care, that I would need chemo, that I would need a wig, etc. I think you have to know yourself and your tolerance levels and be ready to protect yourself from too much information if you need to. |
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My surgeon was a great doctor. He was thorough in all ways. He managed to be frank and positive at the same time. He respected our privacy and our intelligence and involved us in decisions at every stage. The frankness was sometimes scary, but once I got used to it, I thought it was better than the usual reassurance and pat on the back. I felt I knew everything--the seriousness of my disease and all the hopeful options. This calmed me down. |
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