I am very grateful for the volunteer driver program that is run through the Canadian Cancer Society. Some of the drivers are very flexible (one let me pick up a prescription and supplies for my home-care yesterday, then when he mentioned that he would be my driver again Friday I told him I have to cancel that one as I also need blood-work... He told me not to bother. That it doesn't matter whether he hangs out for one hour while I have my treatment or two hours, he will work around it!) So sweet :)
I've only had 3 treatments so far, but aside from the burning smells and headaches, I'm also noticing several very thin patches in my hair. Luckily my hair is very short now, and at least two of the patches are next to my surgical scars, but I really didn't think that I would be loosing hair so soon! Eeek!!!
The other (and hopefully final!) whiny issue I have today is about double bookings. On Monday when I began treatments, I spoke with one of the receptionists for the radiation therapy section. I explained to her that I am using the volunteer driver program (which means they are not allowed to change apt times last minute or book outside of certain hours, as they did twice for today, and only let me know while I was in yesterday!), and I told her about my home-care nurse who comes in Mon & Thurs to change the dressings & lines for my med bag. The way that runs, she has to come in after all doses have been given (around 11 am) and be finished before the next dose is programmed to start (1:30 pm). So when I got the schedule for next week from radiation, and both Mon and Thurs had 11:15 am apts, I got a wee bit upset (also have to call the drivers by Wed to book for Mon!)... The main receptionist was not at all helpful, she sent me to talk to the unit staff who told me that there were NO notes on my file, so come in at the previous scheduled time for today (too late to change the drivers' times!) but that she can't do anything about next week. I called in once home, spoke to three people, but FINALLY got it sorted for next week :-)
Hoping now that I can get my full treatment schedule when I go in today... As was asked for on day one!
Okay, whine-fest over! Still having fun sorting and trying to decide what I keep & what goes, but it seems like I am making WAY more mess that space! LOL A few more weeks and everything has to be done! LOL
Thursday, 29 October 2015
Tuesday, 27 October 2015
Radiation
Yesterday I began treatments. After the home-care nurse came in to change the tubes & dressing on my picc line a volunteer driver from the Canadian Cancer center came to take me over to the TBCC. It was a very different experience. I waited for nearly half an hour, but during that time volunteers went through twice offering snacks and drinks to everyone in the waiting areas. As far as I can see, having cancer gives people a strange form of privilege! Free rides, free food & drinks, free classes (if I ever get around to attending them!)... And a great deal of compassion & support from everyone (thanks all!)
The treatment itself was very different. The radiation therapists went over some of the side-affects of treatments - headaches, nausea, etc. They didn't mention the strange burning smells (which apparently half of the brain patients experience... makes me wonder when the nausea is going to hit since they DID mention that one...). They also did not mention that it was the bed itself that moved around, not the radiation machine. That was a very odd sensation as well, especially when I was trying to focus on the picture on the ceiling!
The good part is that it was a fairly quick procedure. Once I was in the room it took less than 15 minutes. Today I have my first weekly follow-up with my radiation Dr. after treatment. Only 32 more radiation sessions, 7 follow up apts with this Dr, 7 more rounds of blood work (for both the antibiotics and then for the chemo), 5 more home care nurse visits... The count downs are on!
Take care all :-)
The treatment itself was very different. The radiation therapists went over some of the side-affects of treatments - headaches, nausea, etc. They didn't mention the strange burning smells (which apparently half of the brain patients experience... makes me wonder when the nausea is going to hit since they DID mention that one...). They also did not mention that it was the bed itself that moved around, not the radiation machine. That was a very odd sensation as well, especially when I was trying to focus on the picture on the ceiling!
The good part is that it was a fairly quick procedure. Once I was in the room it took less than 15 minutes. Today I have my first weekly follow-up with my radiation Dr. after treatment. Only 32 more radiation sessions, 7 follow up apts with this Dr, 7 more rounds of blood work (for both the antibiotics and then for the chemo), 5 more home care nurse visits... The count downs are on!
Take care all :-)
Sunday, 25 October 2015
Sleepless Nights
I have had problems sleeping for my entire life. Right now I am so tired I feel like having a melt-down. The sleeping pills prescribed for me to take through treatments are not helping - I even took a second one around 2 am and still did not get to sleep last night. I haven't slept since Thursday night and am completely exhausted today.
I don't mean to complain, but I hate this feeling and the complete lack of motivation. I have less than two months to not only get through the first round of treatments, but also to sort, pack, sell, and donate everything in my apartment.
Okay... whine-fest over, time to go work on Rori's room... maybe ;)
Thursday, 22 October 2015
Seizures Redefined
I used to think of seizures as something obvious and fairly extreme. The full-on shaking, black out, and loss of bodily control that many epileptics experience (I have witnessed many of those in my life).
During yesterday's education session the oncology nurse explained two other types of seizures. Apparently my experiences of not being able to speak for several minutes, while remembering everything and still having full control of movements, is classified as a "simple partial" seizure. Thankfully I have not had any of those episodes since being on the anti-convulsent medication that was given to me when I first went into hospital at the end of August, but it is still unnerving to realize that I could not recognize a seizure even while I was having them. Plus - what does this mean for me being able to drive again? I know I am not allowed to drive right now, but does that mean I have to wait the 6-12 months before I can? Yikes :(
During yesterday's education session the oncology nurse explained two other types of seizures. Apparently my experiences of not being able to speak for several minutes, while remembering everything and still having full control of movements, is classified as a "simple partial" seizure. Thankfully I have not had any of those episodes since being on the anti-convulsent medication that was given to me when I first went into hospital at the end of August, but it is still unnerving to realize that I could not recognize a seizure even while I was having them. Plus - what does this mean for me being able to drive again? I know I am not allowed to drive right now, but does that mean I have to wait the 6-12 months before I can? Yikes :(
Wednesday, 21 October 2015
Learning a New Language
First of all - thanks to everyone for the unending support and generosity.
I feel now like I am learning a new language. The language of cancer and treatments and options for care, personal directives and end of life care preferences... A lot of things that I had never felt the need to think about two months ago.
But along with that I am also learning about the purely selfless giving nature of so many people - along with friends & family donating $ and food (thank-you!), complete strangers providing care packages of things they feel would have been useful during their own treatments, the other person in attendance at the teaching session today who offered me a ride home (her daughter as driver) and waited while I picked up my homecare supplies for tomorrow's apt, the volunteer driver services receptionist who worked through my schedule of treatments for next week...
Yes, I get to start radiation therapy on Monday! I was told that they prefer to start chemo at the same time, but because of my antibiotics the chemo will have to wait until after Nov 13th. My choice - I told the chemo Dr at my apt yesterday that I plan to be back in ONT with my daughter for Christmas, so they need to figure it out around that. I was also advised that flying is NOT recommended as it has some major effects on the pressure in peoples' heads. I had been told many people fly back and forth for treatments between Calgary and Hamilton... Apparently just not people going through treatments for brain-cancer! So it will be a long drive :)
So now I am home and discovering that I can take care of myself and stave off boredom by doing many small things throughout the day, alternating with 'rest' times (AKA netflix! LOL). Yesterday I was out for 6 hrs for all of my apts and travel time, today was thankfully only 5 hrs because of the ride home. I'm not sure if I am looking forward to the treatments starting or not - 6.5 weeks, but I can at least arrange for rides most days and not have to take transit! LOL
Also, I'm glad that my baby has adjusted so well to life in Ontario - she already has a BFF and is at her birthday party this evening <3 I got to Skype with her while she was staying with another sister & the children she nanny's (whom Rori hung out with here before they moved to ONT a couple of years ago!) on the weekend, and she looks SO grown up! I can't wait to see her again, but knowing how well she is doing makes me very glad that I was able to send her off so quickly.
Hugs and love to all!
I feel now like I am learning a new language. The language of cancer and treatments and options for care, personal directives and end of life care preferences... A lot of things that I had never felt the need to think about two months ago.
But along with that I am also learning about the purely selfless giving nature of so many people - along with friends & family donating $ and food (thank-you!), complete strangers providing care packages of things they feel would have been useful during their own treatments, the other person in attendance at the teaching session today who offered me a ride home (her daughter as driver) and waited while I picked up my homecare supplies for tomorrow's apt, the volunteer driver services receptionist who worked through my schedule of treatments for next week...
Yes, I get to start radiation therapy on Monday! I was told that they prefer to start chemo at the same time, but because of my antibiotics the chemo will have to wait until after Nov 13th. My choice - I told the chemo Dr at my apt yesterday that I plan to be back in ONT with my daughter for Christmas, so they need to figure it out around that. I was also advised that flying is NOT recommended as it has some major effects on the pressure in peoples' heads. I had been told many people fly back and forth for treatments between Calgary and Hamilton... Apparently just not people going through treatments for brain-cancer! So it will be a long drive :)
So now I am home and discovering that I can take care of myself and stave off boredom by doing many small things throughout the day, alternating with 'rest' times (AKA netflix! LOL). Yesterday I was out for 6 hrs for all of my apts and travel time, today was thankfully only 5 hrs because of the ride home. I'm not sure if I am looking forward to the treatments starting or not - 6.5 weeks, but I can at least arrange for rides most days and not have to take transit! LOL
Also, I'm glad that my baby has adjusted so well to life in Ontario - she already has a BFF and is at her birthday party this evening <3 I got to Skype with her while she was staying with another sister & the children she nanny's (whom Rori hung out with here before they moved to ONT a couple of years ago!) on the weekend, and she looks SO grown up! I can't wait to see her again, but knowing how well she is doing makes me very glad that I was able to send her off so quickly.
Hugs and love to all!
Saturday, 17 October 2015
Roller-coaster Ride
The past few weeks have been CRAZY! (and of course I couldn't figure out how to blog from my phone!)
When Lisa was here (now my Mum instead) she was pushing me fairly hard to get out and do 'normal' things. Like one Saturday we rode the c-train up to the mall to grab some groceries, and stuff them in a back-pack to bring home. Which is what I blamed my extreme stiffness and shoulder/neck pain on the next day. Until the Monday after when I started vomiting and could not keep water down.
Back to ER! I bounced around there for a couple of sleepless days/nights. Was treated to CT scans, spinal taps, and multiple attempts to get blood from my non-existent veins. Basically I became a very ill pincushion in the first couple of days before they decided to get me onto broad-spectrum antibiotics (I also had a great fever that made me fairly delirious).
The docs finally found me a room back up in nuerosurgery and decided that the MRI and CT scans showed that there may be a cyst of infection, and that the space where my original tumour had been removed was getting bigger instead of smaller, so yet another surgery was required.
This time around was much less difficult to get over than the first surgery. I have NO sense of time in the initial recovery unit when I woke up, but I was able to speak clearly with the nurses there, see what the room looked like, ask questions, etc. After the first surgery I was unable to name the month or open my eyes, so this time felt very good.
My hold up this time (I was in hospital for my longest stay yet - 2.5 weeks!) was a combination of the cultures they took needing to grow something so they could narrow down the number of IV antibiotics they sent me home with - I was on $7000 worth of meds/mo for ten days, no way could I afford that without any coverage (had to drop U of C so not covered there anymore)! All worked out though, am now on one affordable IV med (plus pills) and thankfully my status as a student & single parent for the past few years did qualify me for the Adult Health Benefits through the government here. Thank-you taxpayers!
From the time that they finally grew a bug (can't remember what infection I have, just that it stems from something commonly found on peoples'hair follicles!) it took 3 more days for me to get out. Talk about frustrating!!! BUT, at least I was able to get my radiation mask finished for TBCC treatments to start in a week or two (after they call with dates/time), have been taught how to change my med bags daily, and have a homecare nurse scheduled for 2x per wk.
It all just took a LONG time to sort out! Plus one of my pic line ports was blocked from the weekend until the day they let me leave (about 5 days I think), which is a huge no-no for sending someone home. Oh well.
Through it all I've had some great support, plus have been able to talk to my baby every couple of days. so proud of her and how well she is doing both in school and socially. I love her resilience and am so glad I have been able to raise such an awesome little girl :)
When Lisa was here (now my Mum instead) she was pushing me fairly hard to get out and do 'normal' things. Like one Saturday we rode the c-train up to the mall to grab some groceries, and stuff them in a back-pack to bring home. Which is what I blamed my extreme stiffness and shoulder/neck pain on the next day. Until the Monday after when I started vomiting and could not keep water down.
Back to ER! I bounced around there for a couple of sleepless days/nights. Was treated to CT scans, spinal taps, and multiple attempts to get blood from my non-existent veins. Basically I became a very ill pincushion in the first couple of days before they decided to get me onto broad-spectrum antibiotics (I also had a great fever that made me fairly delirious).
The docs finally found me a room back up in nuerosurgery and decided that the MRI and CT scans showed that there may be a cyst of infection, and that the space where my original tumour had been removed was getting bigger instead of smaller, so yet another surgery was required.
This time around was much less difficult to get over than the first surgery. I have NO sense of time in the initial recovery unit when I woke up, but I was able to speak clearly with the nurses there, see what the room looked like, ask questions, etc. After the first surgery I was unable to name the month or open my eyes, so this time felt very good.
My hold up this time (I was in hospital for my longest stay yet - 2.5 weeks!) was a combination of the cultures they took needing to grow something so they could narrow down the number of IV antibiotics they sent me home with - I was on $7000 worth of meds/mo for ten days, no way could I afford that without any coverage (had to drop U of C so not covered there anymore)! All worked out though, am now on one affordable IV med (plus pills) and thankfully my status as a student & single parent for the past few years did qualify me for the Adult Health Benefits through the government here. Thank-you taxpayers!
From the time that they finally grew a bug (can't remember what infection I have, just that it stems from something commonly found on peoples'hair follicles!) it took 3 more days for me to get out. Talk about frustrating!!! BUT, at least I was able to get my radiation mask finished for TBCC treatments to start in a week or two (after they call with dates/time), have been taught how to change my med bags daily, and have a homecare nurse scheduled for 2x per wk.
It all just took a LONG time to sort out! Plus one of my pic line ports was blocked from the weekend until the day they let me leave (about 5 days I think), which is a huge no-no for sending someone home. Oh well.
Through it all I've had some great support, plus have been able to talk to my baby every couple of days. so proud of her and how well she is doing both in school and socially. I love her resilience and am so glad I have been able to raise such an awesome little girl :)
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