First the cancer update
I've had my first 6 treatments of radiation and 2 more left next week. I don't remember if I mentioned that the original plan was for 4 treatments but this was changed to 8 at 1/2 of the dose of radiation. This is because my tumour is very close to the major vein and artery to my heart so they don't want to chance damaging them. Good idea, says I - I kinda need those blood vessels!
First treatment was last Friday then 5 treatments this past week. Once a day, every day. The first few treatments hit me really hard - extreme tiredness and after the first 2, extreme cold as well. Thank heavens the cold was only after the first 2 - it was hell! I'm also very grateful that the tiredness let up for the last 2 days. I still get tired after doing almost nothing but at least I'm not falling asleep every other minute. Only 2 more to go then I get to ring the bell.
I drove myself for the first 3 but after getting home on Tues, I knew I couldn't do it again - it was really hard to stay alert for the last part of the drive home. Luckily for me, Branigan wasn't working this week so he was able to take me for the last 3. I'm hoping the weekend off will rest me enough that I'll be able to drive myself next week but as I'm still easily exhausted it's not likely going to happen.
Another wonderful side effect (possibly partially the NSIP acting up) is the cough. Horrid, hacking, exhausting, breath-taking and sometimes gob producing cough. Sometimes I feel like I'm going to puke, sometimes I get a stomach cramp from the strength of the cough and sometimes I get a headache and/or a sore throat.
Poor Kayla just can't understand - she wants to comfort me when I'm hacking up my last breath but I can't abide her near me then.
That some of my friends and family regularly checked on my well-being and were available for me should I really need them really helped and I love them for it. I really need to find some way to show my appreciation.
With all the utter exhaustion and coughing, I've been varying from a little low to majorly low mood-wise.
Pity Party Time
This is where I get to feeling sorry for myself so fee free to skip this part, I really learned who my true friends are. I've only told people that I really thought were good friends and of course some of my family that I have cancer. But there are a some of those 'close' people who haven't contacted me since I told them that I have cancer and this hurts - a lot!
I'm thinking of doing a bit of an experiment after I finish my treatments. I'm thinking of posting a picture of the Bell of Hope and announcing that I rang that bell today (or whenever). I wonder if anyone (other than the few people who I know will) will congratulate me or if that announcement will fall on deaf ears as my little hints (some not so little) that I'm unwell have gone unnoticed.
As if my mood wasn't low enough, I was watching a YouTube video about final send offs and it made me wonder if anyone will remember me when I'm gone. Some of these send offs included hundreds of well wishers and mourners and I wonder if there will be more than a handful of people when they put my ashes in the ground. I really need to stop myself from watching videos like this when I'm already feeling down.
Pity party over - got cheese to go with my whine??
Love this blog - I get to vent my feelings to no one in particular and I always feel so much better afterwards. My mood now is SO much better!!
I believe alien life is quite common in the universe, although intelligent life is less so. Some say it has yet to appear on planet Earth.
Stephen Hawking
Saturday, 24 March 2018
Monday, 12 March 2018
Damn Everything!
Just a note to get it out of my system. Feeling low today.
Pissed off about everything and nothing. Damned cough that makes my throat sore, makes me pee a bit (thank heavens for pads!) and leaves me feeling exhausted. Damned NSIP for existing! Damned cancer! Sorry that others have to go through these dreadful diseases and that some don't make it. Damned CRPS and sorry my friend has to deal with the constant pain. Damned me that I can't do anything to help her or make these diseases disappear. Damned sun for shining when I feel like shit! Damned dog for barking at everything. Damn feeling out of breath when doing just basic things like getting dressed, making coffee, living. Damn Dr. for not telling me anything and damn me for not knowing what to ask. Damn God for allowing these diseases and all disease to exist! Basically just damn EVERYTHING!!
Being on the FaceBook support pages have been helpful in allowing me to vent without being judged and for teaching me different things about the diseases. But they are also depressing when I read how some don't survive and that some have way worse problems than I do. I suppose I should feel lucky that I'm doing better than some on the NSIP pages but instead I get scared wondering if this is what I get to look forward to. On the cancer support pages, I see that some have survived the disease for years beyond what the Dr's thought they would, some who are now cancer-free and these give me some hope. Flip side - those who don't make it, those who are very ill, and scariest of all is the reports from people who thought they had beat it only to have it reappear! I'm going to have to decide if the benefits of the pages outweigh the cons and if I should continue to visit the pages or leave them.
Regarding the cancer, I got my dates for the mock-up and first treatment. I go for the mock-up (dry run or, as my sister put it, dress rehearsal) on Wed and the first treatment on Fri. I wasn't particularly anxious about the treatments until I got the actual date then the anxiety set if. I'm nervous as shit! I will get the rest of the schedule for treatments when I go on Fri.
I really want Howard to be here with me as I continue on this journey but he was snatched from me and Branigan. (another reason to be pissed off at God). I also find myself wanting my Mom! Guess we can grow up but we never stop needing our mommy.
I had determined (before the cancer made its appearance) that I was going to treat the NSIP as a just another unplanned road trip and accept whatever comes will have its own form of beauty and awe. With the cancer, I kind of forgot about that decision. I had acquired a sense of peace from making that decision and I really want to get that back but I'm having a tough time getting there. I guess I just need to get through the cancer treatments and go from there. Maybe I need a new analogy for this journey through life. Anyone have any suggestions?
Feeling a little better now that I've gotten my rant and fears out. Will talk again soon I expect.
Pissed off about everything and nothing. Damned cough that makes my throat sore, makes me pee a bit (thank heavens for pads!) and leaves me feeling exhausted. Damned NSIP for existing! Damned cancer! Sorry that others have to go through these dreadful diseases and that some don't make it. Damned CRPS and sorry my friend has to deal with the constant pain. Damned me that I can't do anything to help her or make these diseases disappear. Damned sun for shining when I feel like shit! Damned dog for barking at everything. Damn feeling out of breath when doing just basic things like getting dressed, making coffee, living. Damn Dr. for not telling me anything and damn me for not knowing what to ask. Damn God for allowing these diseases and all disease to exist! Basically just damn EVERYTHING!!
Being on the FaceBook support pages have been helpful in allowing me to vent without being judged and for teaching me different things about the diseases. But they are also depressing when I read how some don't survive and that some have way worse problems than I do. I suppose I should feel lucky that I'm doing better than some on the NSIP pages but instead I get scared wondering if this is what I get to look forward to. On the cancer support pages, I see that some have survived the disease for years beyond what the Dr's thought they would, some who are now cancer-free and these give me some hope. Flip side - those who don't make it, those who are very ill, and scariest of all is the reports from people who thought they had beat it only to have it reappear! I'm going to have to decide if the benefits of the pages outweigh the cons and if I should continue to visit the pages or leave them.
Regarding the cancer, I got my dates for the mock-up and first treatment. I go for the mock-up (dry run or, as my sister put it, dress rehearsal) on Wed and the first treatment on Fri. I wasn't particularly anxious about the treatments until I got the actual date then the anxiety set if. I'm nervous as shit! I will get the rest of the schedule for treatments when I go on Fri.
I really want Howard to be here with me as I continue on this journey but he was snatched from me and Branigan. (another reason to be pissed off at God). I also find myself wanting my Mom! Guess we can grow up but we never stop needing our mommy.
I had determined (before the cancer made its appearance) that I was going to treat the NSIP as a just another unplanned road trip and accept whatever comes will have its own form of beauty and awe. With the cancer, I kind of forgot about that decision. I had acquired a sense of peace from making that decision and I really want to get that back but I'm having a tough time getting there. I guess I just need to get through the cancer treatments and go from there. Maybe I need a new analogy for this journey through life. Anyone have any suggestions?
Feeling a little better now that I've gotten my rant and fears out. Will talk again soon I expect.
Tuesday, 6 March 2018
Just a Note and a Vent
Just felt like writing down what's up today.
Health-wise I'm OK, mood is a little down but manageable. I was able to get some stuff done around the house today without running out of breath big-time so I guess it was a good day.
My weight has been climbing again. Don't want that to happen so guess I should try cutting back on my intake a bit. (this said after eating pizza pops for supper lol).
Talked to the radiation oncologist today. He sounds very pleasant and was patient with me although I'm sure he has a lot of other things he could have been doing instead of talking to me. My chest discomfort on the left side is to be expected as the tumour is at the top of my left lung and may be pressing against the surrounding muscles, etc. He didn't know why I would have any discomfort on the right side.
The pulmonary hypertension he said I should discuss with my pulmonologist.
My dates for treatment were being discussed as we spoke and they are trying to figure out how to fit me into the schedule as my treatments will be a bit longer than most. (silly me, I didn't ask him why)
He said I should be able to book my trip around the end of April/beginning of May. Any side effects of the treatment should be over by then. I looked up the availability of travel at the end of April and it is all sold out so beginning of May looks more promising. I don't want to leave it any longer as the price hikes up a lot for the summer season.
As the evening progresses, I find my mood is getting lower. I can't help but think that I've been dealt a losing hand - first the NSIP which will eventually kill me as it has no cure, then the cancer. It's kind of funny that when I was told by my GP and then again by my first pulmonologist that 'at least it isn't cancer', my internal reaction was anger as at least there is a possibility of beating cancer. When I said as much to the Drs. they seemed surprised at my reaction. Low and behold, a year plus later and I'm told I have cancer. And it does seem that this cancer can be beaten with a few radiation treatments. The down side to the treatments is that they may cause the fibrosis caused by the NSIP to worsen.
I feel like I'm living on borrowed time and don't have any options to stop the clock! 100% mortality with the NSIP and a 20% chance the cancer won't be cured by the treatments. It is so aggravating that I don't have control over my future! I'm not ready to give up by any imagination but the specter of death is always hanging over me these days.
Yeah, I know....sucks to be me, now pull up the big girl panties and get on with life.
Venting here is always cathartic for me. I used to be a little bit sad that no one ever read this blog but now I'm happy that they don't. That way I can feel like I can write whatever I want without hurting anyone's feelings. I can be as bitchy or tearful as I want.
Enough for today. Talk again maybe tomorrow or whenever.
Health-wise I'm OK, mood is a little down but manageable. I was able to get some stuff done around the house today without running out of breath big-time so I guess it was a good day.
My weight has been climbing again. Don't want that to happen so guess I should try cutting back on my intake a bit. (this said after eating pizza pops for supper lol).
Talked to the radiation oncologist today. He sounds very pleasant and was patient with me although I'm sure he has a lot of other things he could have been doing instead of talking to me. My chest discomfort on the left side is to be expected as the tumour is at the top of my left lung and may be pressing against the surrounding muscles, etc. He didn't know why I would have any discomfort on the right side.
The pulmonary hypertension he said I should discuss with my pulmonologist.
My dates for treatment were being discussed as we spoke and they are trying to figure out how to fit me into the schedule as my treatments will be a bit longer than most. (silly me, I didn't ask him why)
He said I should be able to book my trip around the end of April/beginning of May. Any side effects of the treatment should be over by then. I looked up the availability of travel at the end of April and it is all sold out so beginning of May looks more promising. I don't want to leave it any longer as the price hikes up a lot for the summer season.
As the evening progresses, I find my mood is getting lower. I can't help but think that I've been dealt a losing hand - first the NSIP which will eventually kill me as it has no cure, then the cancer. It's kind of funny that when I was told by my GP and then again by my first pulmonologist that 'at least it isn't cancer', my internal reaction was anger as at least there is a possibility of beating cancer. When I said as much to the Drs. they seemed surprised at my reaction. Low and behold, a year plus later and I'm told I have cancer. And it does seem that this cancer can be beaten with a few radiation treatments. The down side to the treatments is that they may cause the fibrosis caused by the NSIP to worsen.
I feel like I'm living on borrowed time and don't have any options to stop the clock! 100% mortality with the NSIP and a 20% chance the cancer won't be cured by the treatments. It is so aggravating that I don't have control over my future! I'm not ready to give up by any imagination but the specter of death is always hanging over me these days.
Yeah, I know....sucks to be me, now pull up the big girl panties and get on with life.
Venting here is always cathartic for me. I used to be a little bit sad that no one ever read this blog but now I'm happy that they don't. That way I can feel like I can write whatever I want without hurting anyone's feelings. I can be as bitchy or tearful as I want.
Enough for today. Talk again maybe tomorrow or whenever.
Saturday, 3 March 2018
Changes
It's pretty amazing how quickly my health changes. I had a couple of days where I had trouble breathing and was really cranky. Then suddenly I felt much better! Well enough to go grocery shopping with my son. I overdid it a bit though so I am very appreciative that he helped me a lot. He packed the groceries at the store, brought them into the house and even put most of them away for me. Love that young man! After the shopping, I had a 2 hour or so nap and still went to bed fairly early for me.
Today I feel great! Breathing isn't too bad and my mood is really good. Today I really feel like I'm going to beat this cancer!
Working on the cards for my sister's Red Hat Society group. When I started doing these cards, I thought they would bore me to tears doing 24 of the same cards. But once I chose the colours to work with and decided how I was going to go about colouring them it became really easy. Even fun with the extra decorations I put on each card. The reason I bring up the cards today is because they have been a good thing for me. No thinking involved but the action of colouring the ladies on the cards got me away from thinking about the cancer all the time. Something I really needed and I even ended up making more cards than requested!
Now the cards are nearing completion, I'm trying to think about what project I will take on next. I should be done the cards in the next couple of days and still have another week or so before treatments start. I don't want a project that will take a ton of thinking but something similar to what I was doing for my sister. Maybe I'll start working on some boxes of cards for Christmas/birthday/whatever gifts. I really liked the ones I made at Christmas so may make more like them.
It really feels good to be in a great mood today. Here's to hoping the mood continues!
Today I feel great! Breathing isn't too bad and my mood is really good. Today I really feel like I'm going to beat this cancer!
Working on the cards for my sister's Red Hat Society group. When I started doing these cards, I thought they would bore me to tears doing 24 of the same cards. But once I chose the colours to work with and decided how I was going to go about colouring them it became really easy. Even fun with the extra decorations I put on each card. The reason I bring up the cards today is because they have been a good thing for me. No thinking involved but the action of colouring the ladies on the cards got me away from thinking about the cancer all the time. Something I really needed and I even ended up making more cards than requested!
Now the cards are nearing completion, I'm trying to think about what project I will take on next. I should be done the cards in the next couple of days and still have another week or so before treatments start. I don't want a project that will take a ton of thinking but something similar to what I was doing for my sister. Maybe I'll start working on some boxes of cards for Christmas/birthday/whatever gifts. I really liked the ones I made at Christmas so may make more like them.
It really feels good to be in a great mood today. Here's to hoping the mood continues!
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