Just a quick note to get some stuff off my chest.
Good news is that I got my appointment with the ILD specialist and it is earlier than I expected (Oct instead of Nov). Hopefully I'll have some answers then. Just from the work up, I know already that she is going to be thorough. I have to go for blood work - tests I've never heard of before and there is one that the lab tech probably won't have heard of either. I also have to fill out a food diary as well as the usual list of medications, etc. Also, there will be a 30 to 60 min phone interview prior to the appointment which itself will take about 3 to 4 hours! Wow!!
The smoke from the B.C. fires has been weighing heavily on my ability to get out and do anything. Apparently on at least one day recently, the pollution index for Edmonton was as bad as that in China. They are forecasting rain in B.C. in the next few days so hopefully that will help settle the smoke.
I was going to go for a road trip. Was thinking of going to Ontario and the Great Lakes as I really want to go to the ocean but with the smoke, going west isn't a good idea. The Great Lakes, I figured would be a good option. I then decided that for my first trip with the oxygen, I wanted someone to come with me in case I needed help with something. Then I'd have a better idea of what I need to know to travel with the tanks and could strike out on my own. Couldn't find anyone to come with me so that idea was quashed. Then I decided that I would head out to MJ to see ME and maybe we could do a short trip from there. Not happening, at least not this weekend, as the smoke is thick there as well. Here the AC keeps the smoke out of the house for the most part and ME doesn't have AC so I decided to wait out the smoke here. Very disappointing that I had to cancel. I'm going stir crazy stuck here in the house!
I haven't been in a very good place mentally lately. Trying to wrap my mind around needing oxygen has been a tough one. It seems that every time I turn around, I'm coming up against something that I used to be able to do without batting an eye, that now I either can't do by myself or have to figure out a new way to do it. One of these things is my love of road trips by the seat of my pants. I love to go on a trip with a general direction in mind but how I get there (and if) all depends on whether I turn left or right at a corner. You never know where you will end up and what you will see on trips like this. Hotels are chosen at random and the stay may be one night or more if I like the area. No more can I do this kind of trip. Now I need to ensure that I know where the closest oxygen supplier is and can only go as far as what oxygen I have in the car. I suppose I could still choose hotels at random but if I know when and where I'll be on a specific day, I may as well pre-book so I can get a cheaper deal.
I recently read an article by a Dr. about transition periods for those with lung disease. He explained that there are 4 big transition periods for the person diagnosed with a disease. The first one comes with diagnoses, the second comes when oxygen is needed for exertion, the third is when oxygen is needed 24/7 and finally the fourth is when the oxygen needs become such that high flow is needed.
This totally makes sense to me. For example, when I was first diagnosed with the disease, I googled the heck out of it and was terrified by the results of my searching. After a while, I settled into a form of acceptance and got on with my life. Now that I'm on oxygen for exertion, I have to learn how to do things like travel in the car from point a to point b, how not to get the tubing twisted around things in the house, and the like. That part is, although a pain, something I can eventually adjust to (at least I hope so). The hard part is the loss of independence and the fear. I'm afraid to go out because I don't want to run out of oxygen while out, afraid that I will have one of my shortness of breath episodes in public, afraid (to a small amount) of what other's think of this old woman with the oxygen tank in tow. Loss of independence covers the gamut of needing help to get groceries. needing help around the house and the loss of the ability to pick up and go whenever I want. Some of this loss of independence is due to the fears previously mentioned but most of it is because I have no strength to do some stuff and other stuff makes me so short of breath it's scary. I can't imagine what it will be like when the third transition comes - I won't even contemplate it - I am having a hard enough time trying to get through this transition! As to the fourth, I'm not even sure what it is. If you are interested, here is the link to the article. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6045697/ Reading this made me feel like I'm not alone and others have had/are having the same difficulties as I am. I just wish I'd had a Dr. like him from the start.
Well, my short note turned out a bit longer than planned. It was just going to be a whine session but I added some education for you as well. Thanks for listening.
Toodle-oo til next time.
Friday, 24 August 2018
Friday, 17 August 2018
OMG!! I've been negligent.
Just realized I haven't put anything on my blog since before the cancer treatments were over. My bad!!
Some changes have happened since then.
The radiation treatments were completed without a hitch and no real side effects except being extremely tired and possibly some more fibrotic tissue being formed. I was lucky to have 2 awesome people with me for the last treatment and they convinced me to ring the bell. Apparently, you are supposed to ring the bell away from any people - poor Laura got the damn thing rung almost in her ear and it was LOUD! Sorry, kiddo!
Continuing on the cancer theme, I slowly got over the tiredness and pretty much back to normal (I'll deal with the fibrosis later). In June I had my first follow up CT scan to see if the cancer has been beaten and it looks good! The tumour isn't being active and has shrunk somewhat (they didn't tell me how much it had shrunk and I didn't think to ask). Next appointment is in December.
Now to the NSIP which hasn't been behaving well. As I mentioned, there was likely some more fibrosis developed due to the radiation. As a result, I started coughing even more and getting short of breath with less exertion. This continued to slowly get worse over time.
Then one day in July, I went for supper with my friend and after supper I went to use the facilities. I don't know what they had used in the bathroom but there was a VERY strong chemical smell in there. I'm wondering if they hadn't fumigated or something as it wasn't really a cleaning chemical smell. After that, I had a huge coughing fit and my breathing declined more rapidly. I tried calling my pulmonologist on the following Tues as it was getting worse, but he never returned the call all week. Eventually, I took myself to emergency (mostly for another problem but to get my breathing checked as well). Long story short, I ended up going home with an oxygen tank that night and they set me up the next day with the home machine and tanks.
Now I'm trying to get used to having this darn tubing following me around in the house and trying to figure out how to work the tanks around any outings I go on. Grocery shopping, as with any shopping, has become a hassle and requires planning (how long will I be gone, how many tanks do I need, etc.) But on the silver lining side of this cloud is the fact that I can breathe SO much easier and my coughing has decreased to almost gone when I'm on the oxygen.
From beginning of July until next week, I've been attending Pulmonary Rehabilitation. This is a twice weekly program where for the first hour they teach us things like the importance of exercise, how to travel with oxygen, how to properly use inhalers and other meds, etc. It has been an informative program. The next 2 hours are spent in the gym using the equipment under supervision of the awesome staff. They teach us how to use the machines, push us to do more, help when we are falling behind. I've discovered that I really don't like the treadmill but like the stepper/bike thingy. Actually considering buying one for myself so I can work out at home. After the program, I'm totally exhausted!
I'm presently waiting to hear when I will get to see the ILD specialist. I requested a referral to her from my present pulmonologist (the one who didn't bother to call me back for over a week). I wasn't positive that the referral was sent so I called her office and was told that they had received the referral and I would likely have my appointment in November. Long wait, but not unexpected. I'm putting all my hope in this new Dr. as I've heard nothing but great things about her. Hopefully after seeing her, I'll be much wiser about this disease, the treatment options and prognosis. Everything I've read and everyone I've talked to (I'm on a couple of FB pages with others who have this and similar diseases) say there are treatment options to slow the progress of the fibrosis and to clear up the cellular component. To date, I haven't been offered any treatment options.
On a more exciting note, I'm planning a road trip after the program is finished next week. Hopefully I'll be able to head out on the weekend but still have a couple of hoops to jump through to arrange for oxygen along the way. There has been a lot of smoke in the air here for quite a while now which keeps me indoors. I initially wanted to go to Seattle area and the ocean but decided that staying in Canada would be much easier with the oxygen (I'd have to buy oxygen if I went to the US) and going east would get me out of the smoke rather than driving into it by going west. Also the altitude of the mountains might play games with my breathing. I'll leave that for future trips and keep my maiden voyage simple. I'm also hoping I can find a travel companion but it isn't looking like anyone can come with me.
OK, this has turned out to be a long yammer so I'll stop boring you now.
Will write a note when I get home from my trip.
Just breathe!
Some changes have happened since then.
The radiation treatments were completed without a hitch and no real side effects except being extremely tired and possibly some more fibrotic tissue being formed. I was lucky to have 2 awesome people with me for the last treatment and they convinced me to ring the bell. Apparently, you are supposed to ring the bell away from any people - poor Laura got the damn thing rung almost in her ear and it was LOUD! Sorry, kiddo!
Continuing on the cancer theme, I slowly got over the tiredness and pretty much back to normal (I'll deal with the fibrosis later). In June I had my first follow up CT scan to see if the cancer has been beaten and it looks good! The tumour isn't being active and has shrunk somewhat (they didn't tell me how much it had shrunk and I didn't think to ask). Next appointment is in December.
Now to the NSIP which hasn't been behaving well. As I mentioned, there was likely some more fibrosis developed due to the radiation. As a result, I started coughing even more and getting short of breath with less exertion. This continued to slowly get worse over time.
Then one day in July, I went for supper with my friend and after supper I went to use the facilities. I don't know what they had used in the bathroom but there was a VERY strong chemical smell in there. I'm wondering if they hadn't fumigated or something as it wasn't really a cleaning chemical smell. After that, I had a huge coughing fit and my breathing declined more rapidly. I tried calling my pulmonologist on the following Tues as it was getting worse, but he never returned the call all week. Eventually, I took myself to emergency (mostly for another problem but to get my breathing checked as well). Long story short, I ended up going home with an oxygen tank that night and they set me up the next day with the home machine and tanks.
Now I'm trying to get used to having this darn tubing following me around in the house and trying to figure out how to work the tanks around any outings I go on. Grocery shopping, as with any shopping, has become a hassle and requires planning (how long will I be gone, how many tanks do I need, etc.) But on the silver lining side of this cloud is the fact that I can breathe SO much easier and my coughing has decreased to almost gone when I'm on the oxygen.
From beginning of July until next week, I've been attending Pulmonary Rehabilitation. This is a twice weekly program where for the first hour they teach us things like the importance of exercise, how to travel with oxygen, how to properly use inhalers and other meds, etc. It has been an informative program. The next 2 hours are spent in the gym using the equipment under supervision of the awesome staff. They teach us how to use the machines, push us to do more, help when we are falling behind. I've discovered that I really don't like the treadmill but like the stepper/bike thingy. Actually considering buying one for myself so I can work out at home. After the program, I'm totally exhausted!
I'm presently waiting to hear when I will get to see the ILD specialist. I requested a referral to her from my present pulmonologist (the one who didn't bother to call me back for over a week). I wasn't positive that the referral was sent so I called her office and was told that they had received the referral and I would likely have my appointment in November. Long wait, but not unexpected. I'm putting all my hope in this new Dr. as I've heard nothing but great things about her. Hopefully after seeing her, I'll be much wiser about this disease, the treatment options and prognosis. Everything I've read and everyone I've talked to (I'm on a couple of FB pages with others who have this and similar diseases) say there are treatment options to slow the progress of the fibrosis and to clear up the cellular component. To date, I haven't been offered any treatment options.
On a more exciting note, I'm planning a road trip after the program is finished next week. Hopefully I'll be able to head out on the weekend but still have a couple of hoops to jump through to arrange for oxygen along the way. There has been a lot of smoke in the air here for quite a while now which keeps me indoors. I initially wanted to go to Seattle area and the ocean but decided that staying in Canada would be much easier with the oxygen (I'd have to buy oxygen if I went to the US) and going east would get me out of the smoke rather than driving into it by going west. Also the altitude of the mountains might play games with my breathing. I'll leave that for future trips and keep my maiden voyage simple. I'm also hoping I can find a travel companion but it isn't looking like anyone can come with me.
OK, this has turned out to be a long yammer so I'll stop boring you now.
Will write a note when I get home from my trip.
Just breathe!
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