Thursday, October 24, 2013
Staples out!
Staples are out....all 42 of them! Thanks Daniella for driving me, holding me up while walking and holding my hair out of the way for their removal. My incision is over 9" long but is nice and clean and healing well. The sensation in my scalp is weird as nerves go from the front up and over your (and mine) head. Mine were cut (lots of them!). Also, my temporal muscle was cut, making eating, talking and general jaw movement painful. It'll heal but it'll be slow.
Sunday, October 20, 2013
What a blessing!
Yesterday, we were blessed to have The Trinity Western University work-day crew arrive with numerous helpers. Some were in the house and some were outside working with Dwayne in the yard. Leaves were raked, weeding done, garden beds ready for the winter and such. Inside, I had a list of things to get done as well. These students were amazing and so gracious as I was only able to sit and answer the occasional questions. Our kids were, of course, amazing at helping and being my greatest advocates.
What a gift!! Pizza and pop were supplied to the starving University students to end their 3hrs of work. Thank you TWU Spartans for blessing our family in such an amazing way!
Disclaimer: Kristin was right, she usually is.
As I've crossed the line at 14 days since surgery (which really isn't that long), my exhaustion level has kicked in even further. I could sleep all day and then some. Sometimes I just have to close my eyes in the middle of a short visit with a friend, I'm sorry if I've done that to you. The 4-6 months that I was initially told to get back to normal is clearly the right time line. I'm working having no visitors on certain days so I can recuperate further.
What a gift!! Pizza and pop were supplied to the starving University students to end their 3hrs of work. Thank you TWU Spartans for blessing our family in such an amazing way!
Disclaimer: Kristin was right, she usually is.
As I've crossed the line at 14 days since surgery (which really isn't that long), my exhaustion level has kicked in even further. I could sleep all day and then some. Sometimes I just have to close my eyes in the middle of a short visit with a friend, I'm sorry if I've done that to you. The 4-6 months that I was initially told to get back to normal is clearly the right time line. I'm working having no visitors on certain days so I can recuperate further.
Wednesday, October 16, 2013
Home for a week
Well, it's been a climb, to say the least (and I don't mean I'm even doing stairs yet!!).
When I came home my family and friends rallied to help with my adjustment to a weaker me. Furniture moved for new sleeping arrangements, as I couldn't lay down for the first few days home. I've since transitioned into bed and am finding new ways of sleeping that don't include my favorite ways of sleeping (as that's where my incision continues to). I've found out I have 42 staples and a 8- 9" incision that goes from the mid spot in front of my right ear all the way up and over to the outside of my left eye, far larger than I'd expected. Yesterday, I got to remove the dressings and wash my whole head! Yes, I've showered but only able to get the back of my head wet.
I have never enjoyed a shower so much!!!!
I'm getting on with rehab'ing my body now, oh how quickly the muscles forget what they're supposed to be doing! Yesterday, I walked to the end of the driveway, about 200', so I'm making progress. I'm still using a wheeled walker for stability but that's going to be gone by Friday, or so I'm determined. My face is still swollen with much bruising around and under my eyes as well as my forehead and down my right side. Today was another step down from my steroids, so I'm only at 2x a day (rather than 4x a day when I left the hospital). I'll be thankful to be off meds fully. Another 8 days of weaning off and then I'll be done!! Staples don't come out for another week but at least they're clean and easy to cover with my new hats and scarves.
Today, as I sit in my chair with sun beaming in the window, I'm so thankful for so much. My family that loves me, my friends and family who visit for tea and understand when I can't focus on what they're saying anymore, the amazing people who are blessing us daily with meals. I can't even describe what it's like to have a healthy dinner just arrive. Sarah doesn't need it be the Mama, Dwayne doesn't arrive exhausted from work and then have to figure out dinner, and Cam, well, we're all in a new state of normal. Maybe it's time for my own boundaries to change!?
Also, today and for many coming weeks/months, may I ask a favor. Please keep my friend
Kristin in your thoughts and prayers. Kristin is my dear friend. In a way I can't describe. She's the one who accompanied me to meet the neurologist the first time for my diagnosis, she's one of my 'people'. Kristin has been on a journey, and today her journey continues with chemo. Please follow her at canadiankristinconnected.blogspot.com, leave messages of encouragement or just uplift her when you can. This woman is amazing and I do so love her.
Well, that's the update for now.
Have a happy day with sunshine and fall colors!
Xo Diane
Tuesday, October 8, 2013
Home again, Home again jiggity jog!
Silence, the best way to get some sleep!
I was able to arrange a trip home yesterday from RCH, after seeing Dr M, physio therapy, and the social worker. Doc was a bit skeptical with my mobility and stability but physio had cleared me and after speaking to Dwayne, Sarah and myself, the social worker was convinced that my family was more than ready to be my primary caregivers. Fortunately, my family can also have a convincing argument about the existence of Unicorns, so they were well prepared for this discussion.
I was happy to give my bed and room to a new patient and allow them to recover with ease. The nurses on the neuro ward were (for the most part) amazing!!! I became mobile quicker than the others in the step-down area (extra special observation area for those of us that are extra special!!), so the nurses weren't needing to pay as much attention to me as some of the patients (one who had to be restrained as an example). I suppose that's a good thing.
Once I was released, it took me quite some time to get dressed and gather the strength to head home. Dwayne and Sarah got the paraphernalia organized and packed up. My nurse gave me the last of my medications and sent me on my way. No more free drugs.
The ride home was tough. Oddly, I was emotional and scared. Would my family be able to do this? Could I remember to ask for help? Would I try to go to fast? Would I want to see people or would I be able to say no when I really needed to? So many things to think about. Dear friend Daniella dropped off a walker (yes, I use a walker), shower chair and some other items for my home needs (provided by her mother-in-law,Wendy, from the Red Cross loan cupboard) by the time I got home yesterday. It has made getting around so much easier. Thanks D!
Dwayne and the kids had been anticipating my arrival and had moved furniture to accommodate my new sleeping needs. I can't lay flat for the first few days while my head/facial swelling is being resolved, so one of our large recliners is now in bedroom for restful sleep. My first night back was an adjustment for all of us. Dwayne was very attentive through the night, up whenever I needed anything or even moved to adjust a blanket. What a great guy!
Sarah spent the day with me today, attending to my every whim. Today was spent dozing, napping, and a brief visit with my friend Lisa, who dropped off some much needed fresh fruit, and snacky items. Kristin, my dear friend of constant support, and amazing listening abilities, also stopped by for a short visit.
At this point my days will be spent not doing much except working on my recovery. Visitors are welcome on a limited basis, depending on my pain and how tired I am. Please do not be offended if the answer is no, or just not right now. As the weeks go on, I'll be getting myself stronger and able to visit for longer and more.
Thank you again, from the bottom of our hearts for all of your love and support as well as the amazing meals that arrive nightly. What a blessing to be loved on like that so I don't have to worry about getting meals done.
Love and hugs,
Di xo
I was able to arrange a trip home yesterday from RCH, after seeing Dr M, physio therapy, and the social worker. Doc was a bit skeptical with my mobility and stability but physio had cleared me and after speaking to Dwayne, Sarah and myself, the social worker was convinced that my family was more than ready to be my primary caregivers. Fortunately, my family can also have a convincing argument about the existence of Unicorns, so they were well prepared for this discussion.
I was happy to give my bed and room to a new patient and allow them to recover with ease. The nurses on the neuro ward were (for the most part) amazing!!! I became mobile quicker than the others in the step-down area (extra special observation area for those of us that are extra special!!), so the nurses weren't needing to pay as much attention to me as some of the patients (one who had to be restrained as an example). I suppose that's a good thing.
Once I was released, it took me quite some time to get dressed and gather the strength to head home. Dwayne and Sarah got the paraphernalia organized and packed up. My nurse gave me the last of my medications and sent me on my way. No more free drugs.
The ride home was tough. Oddly, I was emotional and scared. Would my family be able to do this? Could I remember to ask for help? Would I try to go to fast? Would I want to see people or would I be able to say no when I really needed to? So many things to think about. Dear friend Daniella dropped off a walker (yes, I use a walker), shower chair and some other items for my home needs (provided by her mother-in-law,Wendy, from the Red Cross loan cupboard) by the time I got home yesterday. It has made getting around so much easier. Thanks D!
Dwayne and the kids had been anticipating my arrival and had moved furniture to accommodate my new sleeping needs. I can't lay flat for the first few days while my head/facial swelling is being resolved, so one of our large recliners is now in bedroom for restful sleep. My first night back was an adjustment for all of us. Dwayne was very attentive through the night, up whenever I needed anything or even moved to adjust a blanket. What a great guy!
Sarah spent the day with me today, attending to my every whim. Today was spent dozing, napping, and a brief visit with my friend Lisa, who dropped off some much needed fresh fruit, and snacky items. Kristin, my dear friend of constant support, and amazing listening abilities, also stopped by for a short visit.
At this point my days will be spent not doing much except working on my recovery. Visitors are welcome on a limited basis, depending on my pain and how tired I am. Please do not be offended if the answer is no, or just not right now. As the weeks go on, I'll be getting myself stronger and able to visit for longer and more.
Thank you again, from the bottom of our hearts for all of your love and support as well as the amazing meals that arrive nightly. What a blessing to be loved on like that so I don't have to worry about getting meals done.
Love and hugs,
Di xo
Saturday, October 5, 2013
Second day post-op
Today was a tough one. I vaculate between bored, lonely and tired. Mostly with tears in between all of those phases. I'm missing out on life, or am I? So thankful for friends looking out for my family so that they can look out for me. I had some visitors today, too! Sometimes I just close my eyes and listen while they talk or just sit there. I try to stay awake but I just can keep my eyes open.
I had all of my tubing removed today. My head drain (yup, between my skull and brain) was the last and it was unbelievably painful. Shortly after that, my pretty pressure dressing 'hat' was also removed. It's pressure dressing for a reason and now the effects on my face and incision site are being felt. I'm not able to lay down fully now for a few days as the swelling continues and then drains. Fun stuff!!! I'm now in possession of a gorgeous 😱 10-head (rather than a forehead) with 25-30 staples in it! Sarah has amazingly hooked me up with scarves and headbands to cover the area, thank you my girl for looking after me!
I walked a bit with the Physio yesterday and a bit with Dwayne today. The baby steps are frustrating for me, but, I must remember I just had brain surgery!
Thank you to my family, friends, neighbors and well wishers for holding us in your hearts. My tears and love of appreciation are not enough. Please know that I love you all!
Xo
Di
(That was a bit rambly...I blame it on the meds!!) 😜
Thursday, October 3, 2013
The Big Day
Dwayne, Diane's husband, is the guest blogger for today.
The morning started off early with nervous packing but no passport for sunnier climes needed. Diane spent much of the morning micromanaging food, football, and schedules in an effort to shift her focus away from the coming surgery. We arrived on time for our 7:00 am check in and by 8:00 the pre-op nurse came to get the family to see her off.
The nurse played a small joke on us; warning us to be prepared for her shaved head. Cameras at the ready, we were disappointed when she just looked funny in her blue gown. It was great to see humor so readily used by a high functioning confident team at RCH. By 8:30, after a few final FB posts, and a rash of texts, Diane was wheeled into the staging area for the 11 operating theaters. She was visited by her Anesthesiologist and Dr. M prior to her surgery, and the good Doc actually initialed her forehead before she went in. He was in good spirits and asked her if she would like a superpower installed while he was in there. I offered up super-model as an option, but no one thought that was funny except me. Oh well, tough room. I kissed her and told her I loved her and then just as she went through the door, I shared a comment that our good friend Bruce gave today "Don't worry Di, it's not like it's rocket science." She didn't laugh at that one either. She told me later that she was put under with little warning once on the table, and waking up felt like seconds later, not the 3 1/2 hours it actually took.
The thing that struck me the most in the pre-op experience was the confidence and competence displayed by all the high functioning teams that were coming in to take their patient to the given surgery. Names were checked, allergies double checked, and X marks the spot applied as required all the while a light humor permeated the conversations throughout the room. RCH has their act together.
While waiting in the hall we were greeted by a volunteer who offered us coffee, updates on Diane, and cheap parking tips. What service! More kudo's to RCH. We went and got some breakfast and were back in position before the surgery was over. Dr. M called me once he was done, and I went and met him in recovery where he explained what happened. In brief the tumor was confirmed benign (as expected) so NO CANCER to worry about! Massive relief to have that confirmed. He described the size of it - literally the size of a mandarin orange. He got it all, and Diane came through surgery as smoothly as possible. Now onto recovery.
Diane spent the balance of the day in recovery and then up to post neuro surgery observation where she will be watched over by 2 nurses all night, while being woken every hour to check vitals - much as you would with someone who suffered a massive concussion. Di struggled to remember things from moment to moment, often asking the same question - with the same reaction each time. She got excited and happy after hearing The Mandarin was cancer free three different times. I think this was mostly a drug induced short term memory issue rather than anything else. Cam had to leave to participate in his JV football team's league game. Diane was insistent that he win for her, since she had won for him today. I'm happy to report the team, led in part by Captain Cam, was true to her request, winning by 2 points over Lord Tweedsmuir.
By the time we were asked to leave about 7:30 pm, she was doing much better and even cracked a few jokes and generally started to sound more like herself. She wanted me to leave her phone behind, but there was no way her light sensitive eyes needed to try and stare at a screen.
We will be back in the AM and will offer an update at the end of the day Friday. She will not likely take visitors while at RCH, preferring to focus on recovery rather than being entertained. But Diane being Diane, that may all change and a party might break out any time.
Thanks for all of your best wishes, prayers, and love - it means the world to Diane and all of her family.
Cheers,
Dwayne, Sarah, and Cam
The morning started off early with nervous packing but no passport for sunnier climes needed. Diane spent much of the morning micromanaging food, football, and schedules in an effort to shift her focus away from the coming surgery. We arrived on time for our 7:00 am check in and by 8:00 the pre-op nurse came to get the family to see her off.
The nurse played a small joke on us; warning us to be prepared for her shaved head. Cameras at the ready, we were disappointed when she just looked funny in her blue gown. It was great to see humor so readily used by a high functioning confident team at RCH. By 8:30, after a few final FB posts, and a rash of texts, Diane was wheeled into the staging area for the 11 operating theaters. She was visited by her Anesthesiologist and Dr. M prior to her surgery, and the good Doc actually initialed her forehead before she went in. He was in good spirits and asked her if she would like a superpower installed while he was in there. I offered up super-model as an option, but no one thought that was funny except me. Oh well, tough room. I kissed her and told her I loved her and then just as she went through the door, I shared a comment that our good friend Bruce gave today "Don't worry Di, it's not like it's rocket science." She didn't laugh at that one either. She told me later that she was put under with little warning once on the table, and waking up felt like seconds later, not the 3 1/2 hours it actually took.
The thing that struck me the most in the pre-op experience was the confidence and competence displayed by all the high functioning teams that were coming in to take their patient to the given surgery. Names were checked, allergies double checked, and X marks the spot applied as required all the while a light humor permeated the conversations throughout the room. RCH has their act together.
While waiting in the hall we were greeted by a volunteer who offered us coffee, updates on Diane, and cheap parking tips. What service! More kudo's to RCH. We went and got some breakfast and were back in position before the surgery was over. Dr. M called me once he was done, and I went and met him in recovery where he explained what happened. In brief the tumor was confirmed benign (as expected) so NO CANCER to worry about! Massive relief to have that confirmed. He described the size of it - literally the size of a mandarin orange. He got it all, and Diane came through surgery as smoothly as possible. Now onto recovery.
Diane spent the balance of the day in recovery and then up to post neuro surgery observation where she will be watched over by 2 nurses all night, while being woken every hour to check vitals - much as you would with someone who suffered a massive concussion. Di struggled to remember things from moment to moment, often asking the same question - with the same reaction each time. She got excited and happy after hearing The Mandarin was cancer free three different times. I think this was mostly a drug induced short term memory issue rather than anything else. Cam had to leave to participate in his JV football team's league game. Diane was insistent that he win for her, since she had won for him today. I'm happy to report the team, led in part by Captain Cam, was true to her request, winning by 2 points over Lord Tweedsmuir.
By the time we were asked to leave about 7:30 pm, she was doing much better and even cracked a few jokes and generally started to sound more like herself. She wanted me to leave her phone behind, but there was no way her light sensitive eyes needed to try and stare at a screen.
We will be back in the AM and will offer an update at the end of the day Friday. She will not likely take visitors while at RCH, preferring to focus on recovery rather than being entertained. But Diane being Diane, that may all change and a party might break out any time.
Thanks for all of your best wishes, prayers, and love - it means the world to Diane and all of her family.
Cheers,
Dwayne, Sarah, and Cam
It's today!!
We are all up early and getting the truck packed with all sorts of items (for me and withe Cam's football gear).
I didn't sleep great but that didn't surprise me. I wish this trip included a passport! Sarah says I can take it but won't need it...thanks kid!
Dwayne or Sarah will be updating the blog and my facebook with post surgery info.
Have a great day everyone!!
xoxo
I didn't sleep great but that didn't surprise me. I wish this trip included a passport! Sarah says I can take it but won't need it...thanks kid!
Dwayne or Sarah will be updating the blog and my facebook with post surgery info.
Have a great day everyone!!
xoxo
Wednesday, October 2, 2013
Pre-admin done and time for surgery
This was from Monday and I'd forgotten to publish it while sitting at the hospital. Oh well, here it is now!
Another step in the 'it's this week'! Mom and I spent the morning at RCH getting acquainted with the hospital (due to lots of waiting!).
Another step in the 'it's this week'! Mom and I spent the morning at RCH getting acquainted with the hospital (due to lots of waiting!).
Got lots of information for Thursday and beyond. I won't find out until Wednesday when my actual surgery will be and my patience is taking its turn being fine tuned!
Sarah and Cam are having a tough time with logistics. I'm the 'band leader' and the keeper of the plan, usually. This time I don't know the plan until I hear about timing. It's got us all wondering.
On Tuesday morning, as soon as they opened, I got the call from the neurologist office. My time to show up at the hospital is 7am, Thursday. TOMORROW!!!! That means that I have a 9am surgery. I'm happy to be first on the docket and get on the road to recovery. Dwayne and the kids will accompany me to the hospital very early and then they'll stick around to wait for me to come out of recovery. Cam has to be at a football game in Cloverdale at 2:45pm so Auntie D has graciously offered to come and get him at the hospital and get him to Lord Tweedmuir (where I believe they will have a huge win, as it's a clearly a winning day for our family!). He likely won't see me after surgery but he just wants to be with Sarah and Dwayne while they wait.
Dwayne will update the blog and FB when I'm out of recovery and into the neuro department. Thursday night will be a rough one as they will wake me every hour to ensure I'm ok. Friday morning will be spent sleeping. Dwayne and the kids will stay at home on Thursday night and come in about noon on Friday.
I have no idea what the days in the hospital will be like as far as wanting visitors. Please text (or pm on facebook) Dwayne or one of the kids if you're wanting to come and they'll let you know if it's a good time or not. Long way to drive to be turned away at the door. My bulldogs are good ones!
Thank you for the notes, prayers, happy and positive thoughts, pixie dust and rainbows that people are sending my (our) way. We are so thankful for all of them!
Thank you to everyone who is providing meals for our family. I can't tell you how much I appreciate the love and kindness you've shown us. What a blessing!
Have a happy day everyone!!
xoxo
Di
PS Happy Birthday Charlyn Friesen!!
On Tuesday morning, as soon as they opened, I got the call from the neurologist office. My time to show up at the hospital is 7am, Thursday. TOMORROW!!!! That means that I have a 9am surgery. I'm happy to be first on the docket and get on the road to recovery. Dwayne and the kids will accompany me to the hospital very early and then they'll stick around to wait for me to come out of recovery. Cam has to be at a football game in Cloverdale at 2:45pm so Auntie D has graciously offered to come and get him at the hospital and get him to Lord Tweedmuir (where I believe they will have a huge win, as it's a clearly a winning day for our family!). He likely won't see me after surgery but he just wants to be with Sarah and Dwayne while they wait.
Dwayne will update the blog and FB when I'm out of recovery and into the neuro department. Thursday night will be a rough one as they will wake me every hour to ensure I'm ok. Friday morning will be spent sleeping. Dwayne and the kids will stay at home on Thursday night and come in about noon on Friday.
I have no idea what the days in the hospital will be like as far as wanting visitors. Please text (or pm on facebook) Dwayne or one of the kids if you're wanting to come and they'll let you know if it's a good time or not. Long way to drive to be turned away at the door. My bulldogs are good ones!
Thank you for the notes, prayers, happy and positive thoughts, pixie dust and rainbows that people are sending my (our) way. We are so thankful for all of them!
Thank you to everyone who is providing meals for our family. I can't tell you how much I appreciate the love and kindness you've shown us. What a blessing!
Have a happy day everyone!!
xoxo
Di
PS Happy Birthday Charlyn Friesen!!
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