Just realized I hadn't posted this. So it may appear out of the correct timeline.
Feeling pretty low today so thought I'd see if writing it down would help. Sometimes it does.
This waiting to hear if I have cancer or not is driving me to feel more and more depressed. I start thinking that I should get everything in order for should I croak in the near future. Maybe give away/sell much of my craft supplies and dejunk all my belongings to having only what makes me happy and is necessary for daily life. Thing is that I feel so low, that I don't really have the energy to do anything about it. I try to shake myself loose of this feeling but it keeps creeping back.
I know I should find something good to think about but all I can think about is the NSIP and the possibility of cancer. Both of these things can potentially end my life. I'm just not ready to die yet!
Thankfully, the wait for the biopsy will be over soon then I just have to wait to find out the results. I'm hoping the Dr. will call me asap to tell me yay or nay.
I say I'm not afraid of dying, and for the most part, that is true. I am afraid of being sick and dependent on others and part of me is afraid that if/when I do get close to the end, I'll be left alone as family and friends distance themselves from me to preserve themselves. I know how that works, as I've done it myself.
I've heard so much about the NSIP patients getting pneumonia from a simple cold and almost dying from it that I'm almost afraid to go out in public. On the cancer side, everyone knows how hard the chemo and radiation can be on the body. I don't want to be bald and I definitely don't want to feel or be sick.
I hate feeling like I'm in the dark about it all! The people on the NSIP pages I follow seem to know so much more about the disease than I do - I feel like the Dr. is avoiding telling me anything. Is this because he doesn't think I can handle it or because he doesn't know himself? If he doesn't know much about the disease, I would hope he would send me to someone who does. Maybe I should ask next time I see him. If I hear the stock answer that each case is different one more time, I think I'm going to scream! I'm not stupid so I realize that everyone responds differently to any disease but surely he can give me some ideas of what to expect in the future. Not telling me isn't going to make the disease go away and I don't think I'll start being a hypochondriac overnight.
At least the surgeon who I'm seeing about the possible cancer has been straight with me and has told me what my options may be and what the complications may be as far as he knows now.
Enough complaining for now. May enter more later but I do feel a bit better getting it off my chest.
Saturday, 24 February 2018
Cancer update
I've now been to the Cross Cancer Institute for my initial treatment plan visit. I have Stage 2 squamous lung cancer. This is a pretty common cancer and usually found in people who smoked. Unfortunately, I smoked for almost 30 years and I guess the 12 years I've been smoke free doesn't really count.
I don't understand a lot. For example, in all my research a single tumour that hasn't spread and is under 5 cm is a Stage 1b. If it has grown into certain parts of the lung, it becomes a Stage 2 but the Dr didn't say anything about that when I asked. Also the reports I have copies of say my heart warrants further investigation but nothing was mentioned about that or other things that were mentioned in the reports. I don't have 100% confidence in the Dr who told me the info as he is a resident and has yet to finish his specialty. I got the impression that he is fairly new at the Cross but I could be wrong.
Because of my NSIP, they have ruled out surgery as an option and the next step will be steriotactic radiation. They figure 4 doses of this mega radiation will kill the cancer - the percentage that was given to me is 80% that it will work. I'd much rather have been told 100% but you gotta take what you're given. All I can do is hope that it works and I don't have to go to the next step which I imagine would be chemotherapy.
I've been letting my family and long term friends know. I held off until I had a definite diagnosis. Everyone has been so supportive with many offers to help where needed. I'm feeling lucky to have such great friends and family.
A couple of people have told me to stay off Google but my need to know what to expect is too great and there is so much information out there! I know not to believe every word I read and hear but at the least it gives me the questions to ask.
Hopefully Monday I will have more answers than questions when I go for my pre-treatment appointment.
As to how I'm holding up. I had my crying jag when I got the final diagnosis and have been tearful a bit off and on but I'm glad the waiting is over. No one wants to hear they have cancer, but knowing is so much better than wondering. Now there is a plan of action and the Dr. sounded pretty optimistic about my prognosis. I've had periods where I'm mad as hell - mad at Howard because he isn't here to help me through this, mad at cancer research for seeming to drag it's heels at finding a cure, mad at myself for all that smoking, and just plain mad! A lot of time is spent in la-la land where I just sit and think without really thinking about anything. Guess I'm just absorbing the fact that I have cancer and that it isn't just a zodiac sign.
I try to get my mind off it by doing some crafts but my attention span is a bit on the short side. Everything I do, say, hear, and see has the potential to make me think about the cancer. Talk about a 1 track mind!! I've pretty much come to terms with that and it's OK if I think about it a lot. It is a big deal and I'm allowed to wallow a bit here and there. Only for another month or so though. Once the radiation is done, I can get back to normal (well not totally as I'll have to wait a couple months to find out if it worked)! I just hope my friends and family can understand this and not stay away because I talk about the cancer so much. Talking about it makes it seem less threatening somehow.
I'm on a couple of FB pages for people with lung cancer and have been getting lots of information and support there. I know that everyone's story is different and we all react differently to treatment but it is heartening to hear that someone else has gone through the same thing and is now cancer free. On the flip side of that are the sad stories of someone who has lost the battle with the disease. Even these stories teach something.
Well, I think I've rambled on long enough for today. I'll post again when I know more.
I don't understand a lot. For example, in all my research a single tumour that hasn't spread and is under 5 cm is a Stage 1b. If it has grown into certain parts of the lung, it becomes a Stage 2 but the Dr didn't say anything about that when I asked. Also the reports I have copies of say my heart warrants further investigation but nothing was mentioned about that or other things that were mentioned in the reports. I don't have 100% confidence in the Dr who told me the info as he is a resident and has yet to finish his specialty. I got the impression that he is fairly new at the Cross but I could be wrong.
Because of my NSIP, they have ruled out surgery as an option and the next step will be steriotactic radiation. They figure 4 doses of this mega radiation will kill the cancer - the percentage that was given to me is 80% that it will work. I'd much rather have been told 100% but you gotta take what you're given. All I can do is hope that it works and I don't have to go to the next step which I imagine would be chemotherapy.
I've been letting my family and long term friends know. I held off until I had a definite diagnosis. Everyone has been so supportive with many offers to help where needed. I'm feeling lucky to have such great friends and family.
A couple of people have told me to stay off Google but my need to know what to expect is too great and there is so much information out there! I know not to believe every word I read and hear but at the least it gives me the questions to ask.
Hopefully Monday I will have more answers than questions when I go for my pre-treatment appointment.
As to how I'm holding up. I had my crying jag when I got the final diagnosis and have been tearful a bit off and on but I'm glad the waiting is over. No one wants to hear they have cancer, but knowing is so much better than wondering. Now there is a plan of action and the Dr. sounded pretty optimistic about my prognosis. I've had periods where I'm mad as hell - mad at Howard because he isn't here to help me through this, mad at cancer research for seeming to drag it's heels at finding a cure, mad at myself for all that smoking, and just plain mad! A lot of time is spent in la-la land where I just sit and think without really thinking about anything. Guess I'm just absorbing the fact that I have cancer and that it isn't just a zodiac sign.
I try to get my mind off it by doing some crafts but my attention span is a bit on the short side. Everything I do, say, hear, and see has the potential to make me think about the cancer. Talk about a 1 track mind!! I've pretty much come to terms with that and it's OK if I think about it a lot. It is a big deal and I'm allowed to wallow a bit here and there. Only for another month or so though. Once the radiation is done, I can get back to normal (well not totally as I'll have to wait a couple months to find out if it worked)! I just hope my friends and family can understand this and not stay away because I talk about the cancer so much. Talking about it makes it seem less threatening somehow.
I'm on a couple of FB pages for people with lung cancer and have been getting lots of information and support there. I know that everyone's story is different and we all react differently to treatment but it is heartening to hear that someone else has gone through the same thing and is now cancer free. On the flip side of that are the sad stories of someone who has lost the battle with the disease. Even these stories teach something.
Well, I think I've rambled on long enough for today. I'll post again when I know more.
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