December 19, 2009
Another big shift! A true celebration today. I am much warmer – literally. I have been constantly cold with the loss of 20 lbs., and not eating solids it is hard to stay warm in these temperatures. Joan (my sister) mentioned getting microfibre long johns sets. It worked, much warmer. What every person needs is someone who listens and comes up with ideas. I started eating little bits in the last two days. I had applesauce and a small protein drink. That is a huge step for me. It’s coming along.
I went to Knightsbridge Christmas luncheon on Wednesday to say hi to all the people I worked with. It was great to see everyone and at first I felt very nervous. How would everyone react as I have changed so much? With the weight loss and distorted mouth, the bandage around the neck and head tilted over and my voice going in and out? After hugs, I forgot all about those fear thoughts and just enjoyed hanging out. They were just delighted to see me again and encouraging.
I mentioned to someone I might pay for this the next day in recovery. Well I must watch my words, because that night my feeding tube got blocked and we could not get any liquids in at all. By the next morning nothing changed so we rushed to Princess Margaret Hospital. I spent the evening not being able to access the liquid food so come the morning I was quite weak. They flushed it out with a soda compound and reassured me it isn’t the first time. They also spent time with the hole in my neck and re-bandaged it. I had a heart to heart talk with two of the people on my team (both head nurses) who encouraged me and put some realistic timeframes in my healing process as well what to expect over the next while, including the trip to Montreal for Christmas.
The message was about being gentle, slow and patience. This is not just a day surgery and then you're back on your feet. I got a little shaken up and discouraged but grateful for the truth and reminders. Still stung.When I returned home I reached out to a few angels to continue filling my heart and inspiration.
This quote was sent to me among others and I thought was so appropriate.
You must be at the end of your rope. I felt a tug.~Author Unknown
On that note, it's time to relax and enjoy the Christmas holiday time. If you are reading this before, I do want to wish you a great Christmas and thanks for reading this.
It is with the hope that if you know someone who is experiencing something similar I hope I have offered some words of insight from my experiences.
Monday, December 21, 2009
Sunday, December 13, 2009
December 13, 2009
Already 11 days have gone by. Ok an update. It is Sunday morning close to noon. Julian has had a friend sleep over and there is some yelling and screaming between Dad and Julian. It is very hard for me to speak, however I am jumping in and saying no, he cannot talk to you like that or we are driving the friend home now. I am compelled to speak as I cannot stand the disrespect. While I am writing this in my office I am hearing directions being given out and follow through with resistance. So I jump in again.
Ok so this is what it is like to write while having a family life too. You can take some time off work to heal, but you really cannot take time off from parenthood. It doesn’t stop.
I am looking forward to Christmas. We settled on going to Morrisburg (Upper Canada Village) on route to Montreal, to spend it with Sandy (my cousin) and her family which is always good for many laughs then to Vera’s (my sister) in Rawdon to join the rest of my siblings then back to Tony’s place in Greenfield Park and then back home.
Christmas time has a wonderful warm feeling inside me and I so look forward to being with everyone. It is usually lighthearted. I just want to sit close to everyone and tell them how much I appreciate being with them and alive. Yes it has been hard and sometimes very scary. I wake up and my throat is so dry I cannot open my mouth and breathing is strained. I rinse it with baking soda that starts a gagging reaction, and then I pull out a bowl in case I vomit again. I wonder how much longer will this go on? Will it get better or worse? I finished radiation treatment on November 5th and it seems like it has been like this since then. Over a month to some it probably is not that long, but for me it does feel long. On another note, the trache tube is still out and the skin seems to be looking good around the neck. The hole is half healed. I clean the bandage regularly making sure I don’t blister the skin around it, so I am gentle around the delicate areas. They did tell me it may take awhile as the radiation made the whole area very sensitive.
Today I managed to sip some flat ginger ale with melted ice cubes and it went down. I mention these details because it seems to be an exact science of ingredients. However even at that, some days it doesn’t work and my mouth feels like it just went on fire.
I went to a funeral yesterday and earlier in the week attended a wake. December always seems to be a month of transitions. I seem to have a knowing that things will turn around for me and it is not my turn. Although difficult I know I will heal.
Yesterday’s service was very special. It was a former board president of our church. I didn’t know him well, but certainly after hearing many stories yesterday, he was quite a man. It was really a celebration of his life, who he was and how much he meant to so many people. It appeared he did many things in his life time and left an impact. He also had addictions, however made changes and then helped others change their life as well. There was a sadness but at the same time, many of us walked away reinforcing the message about how important it is to live life fully.
Already 11 days have gone by. Ok an update. It is Sunday morning close to noon. Julian has had a friend sleep over and there is some yelling and screaming between Dad and Julian. It is very hard for me to speak, however I am jumping in and saying no, he cannot talk to you like that or we are driving the friend home now. I am compelled to speak as I cannot stand the disrespect. While I am writing this in my office I am hearing directions being given out and follow through with resistance. So I jump in again.
Ok so this is what it is like to write while having a family life too. You can take some time off work to heal, but you really cannot take time off from parenthood. It doesn’t stop.
I am looking forward to Christmas. We settled on going to Morrisburg (Upper Canada Village) on route to Montreal, to spend it with Sandy (my cousin) and her family which is always good for many laughs then to Vera’s (my sister) in Rawdon to join the rest of my siblings then back to Tony’s place in Greenfield Park and then back home.
Christmas time has a wonderful warm feeling inside me and I so look forward to being with everyone. It is usually lighthearted. I just want to sit close to everyone and tell them how much I appreciate being with them and alive. Yes it has been hard and sometimes very scary. I wake up and my throat is so dry I cannot open my mouth and breathing is strained. I rinse it with baking soda that starts a gagging reaction, and then I pull out a bowl in case I vomit again. I wonder how much longer will this go on? Will it get better or worse? I finished radiation treatment on November 5th and it seems like it has been like this since then. Over a month to some it probably is not that long, but for me it does feel long. On another note, the trache tube is still out and the skin seems to be looking good around the neck. The hole is half healed. I clean the bandage regularly making sure I don’t blister the skin around it, so I am gentle around the delicate areas. They did tell me it may take awhile as the radiation made the whole area very sensitive.
Today I managed to sip some flat ginger ale with melted ice cubes and it went down. I mention these details because it seems to be an exact science of ingredients. However even at that, some days it doesn’t work and my mouth feels like it just went on fire.
I went to a funeral yesterday and earlier in the week attended a wake. December always seems to be a month of transitions. I seem to have a knowing that things will turn around for me and it is not my turn. Although difficult I know I will heal.
Yesterday’s service was very special. It was a former board president of our church. I didn’t know him well, but certainly after hearing many stories yesterday, he was quite a man. It was really a celebration of his life, who he was and how much he meant to so many people. It appeared he did many things in his life time and left an impact. He also had addictions, however made changes and then helped others change their life as well. There was a sadness but at the same time, many of us walked away reinforcing the message about how important it is to live life fully.
Wednesday, December 2, 2009
December 2, 2009
I was reviewing the blog and I made reference to the full moon on October 4, 2009 and this evening is another full moon. Comforting to know that there is a consistent mystery out there. In a strange way there is comfort there.
So much has taken place and I am still recovery from the treatments and all the apparatus. I have still not been able to eat or drink (now I have had the odd sips of water or bubbly. Sometimes it works and then other times I open a place up to vomit, which seems to have happened a lot over the last couple of days. I am told my stomach just has to get use to things. It seems that is taking a while to do that.
I went for a CT scan and meeting with the team on Wednesday to get further results and suggestions. This calls on a lot more patience as there has not been any change on the tongue and much discomfort. Using medication helps with the pain, but certainly creates a day of slow movement and lots of sleep.
I had a great weekend with Joan and Vera. Many laughs and tender moments with heartfelt joy. It was fun to have that family around and get some extra care. The three of us got to spend some alone time together, slept at Dave’s place (Joan’s friend) who loaned us space for one night. We each got a king size bed with silk sheets, what a treat.
I have attached more pictures. We created a ritual to burn the mask used for radiation. It was a lovely night and the fire was extremely hot so it got to burn well. Thank you Eddie. We added prayers and gratitude and Vera said this was our winter solstice saying goodbye to what we did not want and hello to what we want. Richard and I have done many solstice ceremonies over the years and I felt incredible love and awareness to have my siblings involved and Vera stepping up to add to the ceremony. Different generations there and we are role modeling to different levels. From a baby, 12 year old, 25 year old and 28 year old.
Kathy Tiovanen the minister from Erin Mills United Church (EMUC) came over to chat. We arrived at the conclusion some things are left to be in mystery or they end up in the same way they were created. Let go and let god. We spoke of that in reference to global warming and saw how similar it is to healing a major illness. One can spend days and hours searching for the why (where I go from time to time) and not be fruitful but more depressed. Better to accept what is and high priority of getting well.
A couple of cousins came by on Friday from Cornwall and Kingston. We had some good laughs and teasing. I was thinking we can do that because we know we can get away with it knowing the intent is in the spirit of fun.
I was reviewing the blog and I made reference to the full moon on October 4, 2009 and this evening is another full moon. Comforting to know that there is a consistent mystery out there. In a strange way there is comfort there.
So much has taken place and I am still recovery from the treatments and all the apparatus. I have still not been able to eat or drink (now I have had the odd sips of water or bubbly. Sometimes it works and then other times I open a place up to vomit, which seems to have happened a lot over the last couple of days. I am told my stomach just has to get use to things. It seems that is taking a while to do that.
I went for a CT scan and meeting with the team on Wednesday to get further results and suggestions. This calls on a lot more patience as there has not been any change on the tongue and much discomfort. Using medication helps with the pain, but certainly creates a day of slow movement and lots of sleep.
I had a great weekend with Joan and Vera. Many laughs and tender moments with heartfelt joy. It was fun to have that family around and get some extra care. The three of us got to spend some alone time together, slept at Dave’s place (Joan’s friend) who loaned us space for one night. We each got a king size bed with silk sheets, what a treat.
I have attached more pictures. We created a ritual to burn the mask used for radiation. It was a lovely night and the fire was extremely hot so it got to burn well. Thank you Eddie. We added prayers and gratitude and Vera said this was our winter solstice saying goodbye to what we did not want and hello to what we want. Richard and I have done many solstice ceremonies over the years and I felt incredible love and awareness to have my siblings involved and Vera stepping up to add to the ceremony. Different generations there and we are role modeling to different levels. From a baby, 12 year old, 25 year old and 28 year old.
Kathy Tiovanen the minister from Erin Mills United Church (EMUC) came over to chat. We arrived at the conclusion some things are left to be in mystery or they end up in the same way they were created. Let go and let god. We spoke of that in reference to global warming and saw how similar it is to healing a major illness. One can spend days and hours searching for the why (where I go from time to time) and not be fruitful but more depressed. Better to accept what is and high priority of getting well.
A couple of cousins came by on Friday from Cornwall and Kingston. We had some good laughs and teasing. I was thinking we can do that because we know we can get away with it knowing the intent is in the spirit of fun.
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