Well here I am, at day 26 of 28 on chemotherapy. I feel the effects beginning to take its toll slowly on me now. I still feel like I have tons of energy throughout the day, but my body is starting to tell me to slow the train down! My wipe-out in the tub the other night was probably a good indicator that I need to dial it back a bit. My balance is one of a 2am drunk most days....probably shouldn't do the bath tub on my own but its my stubborn qualities rising to the surface again.
Still not sleeping worth a damn but I have cut back on my steroid (under my own advice) and hopefully that will help. Managing between 3 and 4 hours a night still. After this round of chemo, I have a follow up appt on May 3rd. From my phone conversation with the nurse, it SOUNDS like they may want to do another 2-28 day rounds of chemo and then not give me an MRI until June 20th. To me, that just sounds ridiculous. If I look at the timeline etc....Last good scan...Oct/10...2 tumours noticed in Feb/11 scan...another scan Mar/11 with confirmation that they had almost doubled in size in a month. Now the chemo...which wasn't helpful last time....then more chemo...and wait 3 months before we scan the head again????? Does not make sense to me. My head might blow off by then! lol I will certainly be discussing this with my Doc next week.
On a positive note, Angela continues to improve on a daily basis. They are putting her into Continuing Care as soon as possible to begin the re-integration into daily living. She has a road ahead of her but has by far exceeded any of our expectations, much to our happiness :) Ang will still need dialysis at least 3 times a week in London and that may be for life. Myself and the family are still closely involved with a Social Worker at the hospital to ensure that Angela continues to progress and attain the best quality of life possible. Oh, as a side note...Angela has a phone now so be prepared for calls!! lol Hope you all have a free hour ;)
All in all, Angela is doing better. I just pray to the Big Guy everyday, that she will remember where she has been over these past few months, and begin to live a fulfilling life once she is back in the land of the living :)
Thank you again and again to all that have supported Angela and our family during this very trying time.
Sincerely,
Ed
Saturday, April 30, 2011
Sunday, April 24, 2011
Easter Sunday Apr. 24/11
Had a good visit with Angela this evening. She has certainly got her appetite back and is officially off the feeding bag now! Physically, Angela still has quite a ways to go. Hopefully the hospital will begin a Physio plan for her on Tuesday. Her muscle mass has obviously taken quite a beating so, like I told Angela, her really needs to adhere to the regimen they set her up on to speed up her recovery in that area.
Mentally, Ang seems to show memory improvement in a lot of areas too but according to some info I was told, Angela will be required eventually to be tested to see if she can accomplish everyday household duties such as cooking, cleaning etc.Her current residence is a 2 storey with no facilities on the main floor, so once we establish what Angela's capabilities actually are...we will then review the options at that point. I told Angela that her main focus needs to be on re-establishing a "life" and all the other stuff will fall into place in due time. Visitors are more than welcome now. Angela seems to cope pretty good with visitors. I am still asking that the conversations be kept simple....she does not need to hear of any gossip or other subjects of conversation that may get her agitated. I am sure that Ang's brain is still going through a healing process so lets not mess that up!
Angela is also on a strict calorie intake regime, so please refrain from bringing in any "treats" at this point. (unless its peanut butter cookies of course) heh heh If anyone has any questions prior to visiting, please do not hesitate to contact any family member, including myself. Ang is on 5TH Floor Room 509.
Thanks for your support with everything :)
Ed
Mentally, Ang seems to show memory improvement in a lot of areas too but according to some info I was told, Angela will be required eventually to be tested to see if she can accomplish everyday household duties such as cooking, cleaning etc.Her current residence is a 2 storey with no facilities on the main floor, so once we establish what Angela's capabilities actually are...we will then review the options at that point. I told Angela that her main focus needs to be on re-establishing a "life" and all the other stuff will fall into place in due time. Visitors are more than welcome now. Angela seems to cope pretty good with visitors. I am still asking that the conversations be kept simple....she does not need to hear of any gossip or other subjects of conversation that may get her agitated. I am sure that Ang's brain is still going through a healing process so lets not mess that up!
Angela is also on a strict calorie intake regime, so please refrain from bringing in any "treats" at this point. (unless its peanut butter cookies of course) heh heh If anyone has any questions prior to visiting, please do not hesitate to contact any family member, including myself. Ang is on 5TH Floor Room 509.
Thanks for your support with everything :)
Ed
Thursday, April 21, 2011
April 21/11
Some good news today! Angela has been transferred back to the St.Thomas hospital to continue with her recovery. The frustrating part is now we have to through all the transfer of information from hospital to hospital. There has already been incidents this evening that could have become a problem because the Nurse did not bother to read Angela's medical history prior to starting her intake. Grrrrrrrr I have provided a minimum of 5 copies to University Hospital regarding important medical information already.....looks like I will have to do the same in St.Thomas. Its almost like they think Angela just came in off the street rather than having just spent 64 days in ICU in London. I have no time or patience for that type of incompetency of lack of compassion in your chosen field.
If anyone is planning on visiting Angela, please allow her a few days to adjust to her new surroundings. She still has some confusion going on and I think it is in her best interest to only have family and close friends visiting until after the Easter weekend. If you truly need to see her prior to that, please contact a family member first. Thanks in advance.
If anyone is planning on visiting Angela, please allow her a few days to adjust to her new surroundings. She still has some confusion going on and I think it is in her best interest to only have family and close friends visiting until after the Easter weekend. If you truly need to see her prior to that, please contact a family member first. Thanks in advance.
Tuesday, April 19, 2011
Angela Visit Apr 19/11
Took Angela's eldest son Brandon up today and we both visited with her. She was in very good spirits today and seemed to be eating some more solid food. I had a long talk with the Social Worker regarding after-care etc so I think I will be a busy boy for a while! Brandon took his mom down to the lobby Tim Hortons for a tea and a cookie and I think Angela has developed a passion for peanut butter cookies. lol Although, I am sure a bale of hay would taste good after 50+ days of no real food!! If Angela continues to improve, there is a POSSIBILITY of her being transferred back to the St.Thomas hospital. That would be awesome for everyone :)
I still sense the confusion in some of Angela's thoughts. Hoping that this will just continue to improve as she rids herself of the cobwebs that surely began to surround her world after such a lengthy hospital stay. The only disadvantage of Angela coming back to St.Thomas will be the dialysis treatments. She will have to be transported back and forth for those at least 3 times a week. I believe our local M.P. Steve Peters was attempting to gather some stats etc of the number of people who would benefit from having a Dialysis Unit here in Elgin County. Feel free to voice your opinion to him ;)
Overall, Angela has improved tenfold from her previous state. Our family is ecstatic with her progress and cannot wait for her to me "home".
I still sense the confusion in some of Angela's thoughts. Hoping that this will just continue to improve as she rids herself of the cobwebs that surely began to surround her world after such a lengthy hospital stay. The only disadvantage of Angela coming back to St.Thomas will be the dialysis treatments. She will have to be transported back and forth for those at least 3 times a week. I believe our local M.P. Steve Peters was attempting to gather some stats etc of the number of people who would benefit from having a Dialysis Unit here in Elgin County. Feel free to voice your opinion to him ;)
Overall, Angela has improved tenfold from her previous state. Our family is ecstatic with her progress and cannot wait for her to me "home".
April 19/11 Day 15 of chemo
Hi all:
Well I am officially over the halfway point with my first round of chemo. The effects have mostly been the inability to sleep for more than 3-4 hours at a time. And to boot, I am not even napping during the day. Damned drugs....I swear they'll kill me before the cancer does. Oh well, they say you can sleep for as long as you want when you're dead (insert snicker here)
It is a very odd time this round. I find that I am feverishly working almost around the clock trying to help people out in any way I can. I'm not sure if this is because I think this is the last round for me, or if its just a change in thinking and wanting to keep myself occupied so I do not dwell on the "other". I'm gonna sign up for the latter I think ;)
So after Chemo ends on May 2nd, I have a follow-up at the Cancer Clinic and we will determine the next course of action. Sad part is.....they have not even given me a date for a follow-up MRI yet to check on the progress of the tumours. Maybe this appt is just to "rub my back and tell me that all is gonna be ok" !!! Buggers!
I totally appreciate our Health System but come on....bringing me back to the clinic without any MRI prior to that??? Whats the purpose in that??
On a better note.....Angela is still improving. She is eating a bit better but is still on dialysis. Personally, I think this dialysis is going to be a long-term thing. I'm going to try to get to the hospital today to see her as well as talk to the Social Worker about after-care etc. We are not sure at this point if Angela can even live on her own or will require some type of facility care.....still so many unknowns. She is still experiencing a lot of confusion with her thoughts etc. We as a family, seem to have to be constantly reminding the Doctors and staff of this. At this point, Angela is really incapable of grasping a lot of events and other such things. Hopefully this improves with time.
With love and gratitude from the whole family to all that have supported us.
Ed
Well I am officially over the halfway point with my first round of chemo. The effects have mostly been the inability to sleep for more than 3-4 hours at a time. And to boot, I am not even napping during the day. Damned drugs....I swear they'll kill me before the cancer does. Oh well, they say you can sleep for as long as you want when you're dead (insert snicker here)
It is a very odd time this round. I find that I am feverishly working almost around the clock trying to help people out in any way I can. I'm not sure if this is because I think this is the last round for me, or if its just a change in thinking and wanting to keep myself occupied so I do not dwell on the "other". I'm gonna sign up for the latter I think ;)
So after Chemo ends on May 2nd, I have a follow-up at the Cancer Clinic and we will determine the next course of action. Sad part is.....they have not even given me a date for a follow-up MRI yet to check on the progress of the tumours. Maybe this appt is just to "rub my back and tell me that all is gonna be ok" !!! Buggers!
I totally appreciate our Health System but come on....bringing me back to the clinic without any MRI prior to that??? Whats the purpose in that??
On a better note.....Angela is still improving. She is eating a bit better but is still on dialysis. Personally, I think this dialysis is going to be a long-term thing. I'm going to try to get to the hospital today to see her as well as talk to the Social Worker about after-care etc. We are not sure at this point if Angela can even live on her own or will require some type of facility care.....still so many unknowns. She is still experiencing a lot of confusion with her thoughts etc. We as a family, seem to have to be constantly reminding the Doctors and staff of this. At this point, Angela is really incapable of grasping a lot of events and other such things. Hopefully this improves with time.
With love and gratitude from the whole family to all that have supported us.
Ed
Friday, April 15, 2011
Sleep?
Sleep, oh sleep.....where art tho?? Here we go again. The steroids I am taking for brain swelling/headaches are certainly up to their old tricks again. They do not allow me to sleep very long. I've ran myself ragged with working ang keeping busy throughout the day in hope that I'd be able to get a good solid sleep but nope, not happening.
Late yesterday afternoon, Myself, my precious daughter Faith, and Jacqui went to an information session at the Cancer Clinic. It was designed for teaching kids about "When a Parent has Cancer". They split the kids into appropriate age groups and they were shown a video and had a gab session with the councillor. The parents were taken into another group and shown the same video and had an open Q&A type of meeting afterward. I highly reccommend it for the kids and spouses of someone fighting this disease. Admittedly, I cried when I was watching the video. It was so hard to listen to these kids talking about their feelings on it. WOW
Physically, I am feeling out of sorts with all this chemo medication and stuff again. My poor body does not know what it wants to do anymore. My appetite is poor, my energy level is high throughout the day....and yet I cannot sleep for more than 5 hours. Crazy stuff!! Today is day 11 of chemo....only 17 more to go! (UGH)
Angela has been moved to the floor from ICU now. Unfortuately I did not get to speak to any of my family yesterday, but I guess no news is good news.I am still working with her son Brandon, trying to assist him on his life path. Hopefully there will be a shining light at the end of these long dark tunnels I seem to be peering down into as of late.
To my friends that are currently going through this dispicable battle of cancer, my thoughts are ALWAYS with you....and to my friends that have passed....you will never be forgotten.
Ed
Late yesterday afternoon, Myself, my precious daughter Faith, and Jacqui went to an information session at the Cancer Clinic. It was designed for teaching kids about "When a Parent has Cancer". They split the kids into appropriate age groups and they were shown a video and had a gab session with the councillor. The parents were taken into another group and shown the same video and had an open Q&A type of meeting afterward. I highly reccommend it for the kids and spouses of someone fighting this disease. Admittedly, I cried when I was watching the video. It was so hard to listen to these kids talking about their feelings on it. WOW
Physically, I am feeling out of sorts with all this chemo medication and stuff again. My poor body does not know what it wants to do anymore. My appetite is poor, my energy level is high throughout the day....and yet I cannot sleep for more than 5 hours. Crazy stuff!! Today is day 11 of chemo....only 17 more to go! (UGH)
Angela has been moved to the floor from ICU now. Unfortuately I did not get to speak to any of my family yesterday, but I guess no news is good news.I am still working with her son Brandon, trying to assist him on his life path. Hopefully there will be a shining light at the end of these long dark tunnels I seem to be peering down into as of late.
To my friends that are currently going through this dispicable battle of cancer, my thoughts are ALWAYS with you....and to my friends that have passed....you will never be forgotten.
Ed
Wednesday, April 13, 2011
Angela Apr 13/11 Day 56
Just another quick update on Angela. She was supposed to me moved out of ICU a day or 2 ago but had a minor issue with sodium, potassium and electrolyte levels so they kept her there for more monitoring. Dialysis seemed to have cleared up the issues. And last I heard yesterday, they we just now waiting for an available bed to open up.
The stories about hospital bed shortages are soooo true. There are people in the E.R. hallways waiting for beds. Very sad!
As for me......headaches still seem to be a minor issue and the steroids I have began taking are not allowing me to sleep very much. Oh well, like the saying goes...."you can sleep when you're dead". heh heh
Take care
The stories about hospital bed shortages are soooo true. There are people in the E.R. hallways waiting for beds. Very sad!
As for me......headaches still seem to be a minor issue and the steroids I have began taking are not allowing me to sleep very much. Oh well, like the saying goes...."you can sleep when you're dead". heh heh
Take care
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