I finally got around to reading The Etiquiette of Illness: What to say when you can't find the words by Susan Halpern. It's a book I've been meaning to read since last May ever since I read about it in the End of Your Life Book Club by Will Schwalbe.
It was okay but I honestly thought it was going to be better. I'm not really sure what I was expecting but Schwalbe described it as providing helpful tips for talking to his mother about cancer so I guess I was expecting more of a 'how to'-type advice book. Instead, it was really a collection of very short (a paragraph or two, sometimes a sentence) stories. The upside of that format was that it was incredibly easy to read in spite of the heavy subject matter. The downside was that I could only read a chapter or two before tiring of so many short stories. I'm not a lover of short stories so reading so many at one time was a bit much for me.
I also found it was quite cancer focused. Halpern was a counselor for people with serious illnesses and had cancer herself it makes sense but I feel like a better variety of stories could have been helpful. There was one chapter about chronic illness but again, that was from the point of view of someone who got cancer and now has to realize that they have a chronic illness.
Maybe it's because I've been in the hospital system for so long or because I'm the one who is ill but I found like all of the advice from the book could be boiled down into one thing: communicate with each other (but that would be a really short book). Communication is important for all when it comes to illness. Not just for friends/ family but also for the person with the illness. Keep an open communication and everyones' stress will be reduced.
For example, no one is going to know if you want people around when your hospitalized if you don't tell anyone. Or as the friend/family member, you don't know if the person wants a visit if you don't ask. Or if you're worried the person will die without having their fiances or will in order, tell them. Everyone will be a lot happier if there is communication on both sides.
Good communication will help overcome a lot of the fears about saying the wrong thing (I covered most of that in my tips for talking to people who are going through a rough time
post). Honestly, if you don't know what to say to the person, just say
'I don't know what to say but I want to be here for you.'
One story that stuck with me was someone who didn't tell anyone, not one person, about their cancer. Their reasoning was that they didn't want anyone to worry. Since this is the complete opposite of my coping strategy of talking to everyone about all my concerns, I don't understand that desire at all. In the end, the person regretted their decision, not just because they found the process isolating, but because it also meant they had to celebrate their successes in silence. I guess after a certain point it would be even harder to announce to your family that "Surprise! Today is my 1 year remission date of the cancer I didn't tell you I had, must have slipped my mind while I was having surgery. Celebrate with me and don't ask any questions!"
Point of the story: talk to those in your support circle. Don't have a strong support circle? Find a good support group in person or online. Tell people about your fears and concerns and wishes. It's as important for both the person with the illness and as it is for the family/friends.
The only other tip that I thought was helpful from a family/friend side, is the importance of adding 'don't feel you need to respond' when sending sympathies or a 'thinking of you' message. As a friend/family, the desire to express that you're thinking of the person is valid and welcomed but it can also be incredibly overwhelming to the a person with the illness to feel as though they need to respond to all the messages. Most people who sent sympathies or well wishes cards or emails don't usually expect a response but telling the person that it's okay not to respond could help relieve some stress.
I guess the book might help some people who don't have much experience with illness or the medical system. Or for people who love reading about other peoples problems. Or for people who love short stories. Or if you have nothing else to read. If you are one of those people, this book is for you.
Monday, 7 July 2014
Sunday, 6 July 2014
Cellular Memory
I spent my evening doing Internet research on cellular memory after Amy texted me about a book she was reading that involved a woman receiving a heart transplant, only to start getting flashes of the donors life. Then it turned out the donor was murdered and now the woman has to solve the mystery before she herself becomes the target. Dun dun dun....oh the drama!
Amy texted to inform me that if I started getting flashes of a murder post-transplant and had to solve the crime, that I shouldn't go looking for the murder myself. Thank you for the concern big sister. It's all very dramatic and sounds perfect for a fiction novel, but I started looking online and there is actually a name for the phenomena (the recieving memory from an organ part, it doesn't have to involve murder).
It's called cellular memory and the theory is that memories are not just made in the brain but that they can be made in other organs. Therefore, when those organs are transplanted, the 'memory' of that organ gets transplanted to that person. That person can then undergoes a personality change or diet chance because of experiences 'remembered' from the initial organ.
While the medical community doesn't support any of the personal claims of individual, there are news articles about this apparent phenomena documenting cases of this effect. The problem is that after reading more than two news stories 'reporting cases', I realized they are all repeating variants of the same three stories:
1) A woman who received the heart from an 18-year-old male who died in a motorcycle accident, reported having a craving for beer and chicken nuggets after the surgery. The heart transplant recipient also began to have reoccurring dreams about a man named 'Tim L.' Upon searching the obituaries, the woman found out her donor's name was Tim and that he loved all of the food that she craved.
2) An eight-year-old girl received the heart of a murdered ten-year-old and began having terrifying dreams about a man murdering her donor. Until then, the murderer had not been caught, but recollections from the girl's dream were so precise that police were able to track down the killer and he was convicted. (This is the one that everyone loves to share and is exactly like the book Amy was reading. Perhaps the author read the same news article)
3) Sonny Graham received the heart of Terry Cottle who had shot himself in the head. After the transplant in 1995 Mr Graham met Mr Cottle's widow Cheryl, falling in love and marrying her (I find that weirdest thing, apparently donor confidentiality wasn't a thing in 1995). Twelve years later, Mr Graham shot himself, leaving Cheryl a widow for the second time grieving for husbands who had shared a heart.
However interesting those stories may be, I don't think that three unverified stories on the Internet means that a phenomena is real. Some reports says there have been '70 cases' of this cellular memory effect but when you match that up against the number of transplants happening every year, 70 examples is not very many.
My Internet research did not come up with any scientific studies, it seems that any attempt to study the phenomenon (I found this on Wikipedia so not the best source) has been more about teaching worms or mice a trick and then feeding that animal to another worm or mouse and seeing if they can perform the same trick. They could not. It isn't quite the same as a organ transplant but it is interesting.
Personally, I side with the medical community (skeptic.com had some actual information) and think most of the changes post-transplant can be attributed to stress of major surgery, side effects from medication, or sheer coincidence. Major surgery is stressful, as is the stress of imminent death so it shouldn't be surprising if peoples personalities change post-transplant.
I think that it's also normal for people to want to feel a connection to their donor and if the anti-rejection meds happen to make someone crave more sweets, I can understand how that could easily be attributed to developing a personality trait of the donor. However, it's just a side-effect of the prednisone. I doubt it would pass a double-blind randomized control study.
So while I think cellular memory is an interesting theory and a fun idea for a murder mystery, when it comes to my list of transplant concerns, getting memories from the donor and having to solve their murder is not one of them.
Amy texted to inform me that if I started getting flashes of a murder post-transplant and had to solve the crime, that I shouldn't go looking for the murder myself. Thank you for the concern big sister. It's all very dramatic and sounds perfect for a fiction novel, but I started looking online and there is actually a name for the phenomena (the recieving memory from an organ part, it doesn't have to involve murder).
It's called cellular memory and the theory is that memories are not just made in the brain but that they can be made in other organs. Therefore, when those organs are transplanted, the 'memory' of that organ gets transplanted to that person. That person can then undergoes a personality change or diet chance because of experiences 'remembered' from the initial organ.
While the medical community doesn't support any of the personal claims of individual, there are news articles about this apparent phenomena documenting cases of this effect. The problem is that after reading more than two news stories 'reporting cases', I realized they are all repeating variants of the same three stories:
1) A woman who received the heart from an 18-year-old male who died in a motorcycle accident, reported having a craving for beer and chicken nuggets after the surgery. The heart transplant recipient also began to have reoccurring dreams about a man named 'Tim L.' Upon searching the obituaries, the woman found out her donor's name was Tim and that he loved all of the food that she craved.
2) An eight-year-old girl received the heart of a murdered ten-year-old and began having terrifying dreams about a man murdering her donor. Until then, the murderer had not been caught, but recollections from the girl's dream were so precise that police were able to track down the killer and he was convicted. (This is the one that everyone loves to share and is exactly like the book Amy was reading. Perhaps the author read the same news article)
3) Sonny Graham received the heart of Terry Cottle who had shot himself in the head. After the transplant in 1995 Mr Graham met Mr Cottle's widow Cheryl, falling in love and marrying her (I find that weirdest thing, apparently donor confidentiality wasn't a thing in 1995). Twelve years later, Mr Graham shot himself, leaving Cheryl a widow for the second time grieving for husbands who had shared a heart.
However interesting those stories may be, I don't think that three unverified stories on the Internet means that a phenomena is real. Some reports says there have been '70 cases' of this cellular memory effect but when you match that up against the number of transplants happening every year, 70 examples is not very many.
My Internet research did not come up with any scientific studies, it seems that any attempt to study the phenomenon (I found this on Wikipedia so not the best source) has been more about teaching worms or mice a trick and then feeding that animal to another worm or mouse and seeing if they can perform the same trick. They could not. It isn't quite the same as a organ transplant but it is interesting.
Personally, I side with the medical community (skeptic.com had some actual information) and think most of the changes post-transplant can be attributed to stress of major surgery, side effects from medication, or sheer coincidence. Major surgery is stressful, as is the stress of imminent death so it shouldn't be surprising if peoples personalities change post-transplant.
I think that it's also normal for people to want to feel a connection to their donor and if the anti-rejection meds happen to make someone crave more sweets, I can understand how that could easily be attributed to developing a personality trait of the donor. However, it's just a side-effect of the prednisone. I doubt it would pass a double-blind randomized control study.
So while I think cellular memory is an interesting theory and a fun idea for a murder mystery, when it comes to my list of transplant concerns, getting memories from the donor and having to solve their murder is not one of them.
Friday, 4 July 2014
Sharpie Pointillism
I haven't had much time to do any new watercolour paintings but I have been doing some more of the sharpie pointillism pictures. They are fun to do as I don't feel I need to complete the entire thing in one block of time. I've been spending more time out on the terrace and it's easier to take out my book and sharpie than trying to set up paints outside. It also helps that if I mess up an area, I just add some more dots.
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| I was trying for a 'balloons dispersing into the sky' effect. |
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Thursday, 3 July 2014
Where is my transplant....
Well, as you can tell, June has passed and all is still quiet on the transplant-front. To be honest, I'm discouraged and am getting somewhat disheartened. For some reason, I really thought that June was going to be my month.
I'm not really sure why I thought it would be June, it just seemed like it would be the perfect month. I would have been recovered by the time the hot summer heat/humidity arrived, so I could really enjoy the summer. Plus, if I had the transplant last month, my three month recovery would have ended just as the apartment lease ended. As well, not to be insensitive, but I thought that there would be an increase of drinking and driving accidents by teenagers at graduation parties which would mean more donors that are closer to my body size. Obviously, we can all agree that it's good that teenagers are not getting into fatal accidents around graduation.
The lack of transplant in June means that the timeline I had imagined when I moved to Toronto is gone. I hadn't really anticipated getting a transplant before May but I thought that I would at least have one by the end of June. I was so good with the waiting bit when I didn't think the surgery was going to happen. However, now that June has come and gone, my waiting anxiety has increased. I feel as thought I should create a new hypothetical timeline but I wouldn't even know which month I would guess at this point. I should start taking bets on it, 6/1 odds on August anyone?
Just for everyones information, according to the Trillium Gift of Life Network, as of July 3rd, in Ontario, there are 84 people waiting for a lung transplant and there have been 51 lung transplants so far this year. At least transplants are happening!
I'm not really sure why I thought it would be June, it just seemed like it would be the perfect month. I would have been recovered by the time the hot summer heat/humidity arrived, so I could really enjoy the summer. Plus, if I had the transplant last month, my three month recovery would have ended just as the apartment lease ended. As well, not to be insensitive, but I thought that there would be an increase of drinking and driving accidents by teenagers at graduation parties which would mean more donors that are closer to my body size. Obviously, we can all agree that it's good that teenagers are not getting into fatal accidents around graduation.
The lack of transplant in June means that the timeline I had imagined when I moved to Toronto is gone. I hadn't really anticipated getting a transplant before May but I thought that I would at least have one by the end of June. I was so good with the waiting bit when I didn't think the surgery was going to happen. However, now that June has come and gone, my waiting anxiety has increased. I feel as thought I should create a new hypothetical timeline but I wouldn't even know which month I would guess at this point. I should start taking bets on it, 6/1 odds on August anyone?
Just for everyones information, according to the Trillium Gift of Life Network, as of July 3rd, in Ontario, there are 84 people waiting for a lung transplant and there have been 51 lung transplants so far this year. At least transplants are happening!
Wednesday, 2 July 2014
Transplant Clinic
I had a doctor appointment with the Transplant Clinic team today and much to my surprise, I was out of there in 30 minutes. It was a very pleasant surprise.
The doctor reviewed the results from the Echo and CT scan I had done in early June. The CT scan showed an increase of mucous in my lungs, particularly my left lung, since last year. The doctor recommended that I increase the frequency of my chest compressions to try to dislodge some of the buildup. It's not surprising that there is more buildup since last year considering everything that has happened in the past year.
The surprising part of the visit was that my Echo showed that I have a small murmur in my left pulmonary vein. At least I think it was the pulmonary vein, the doctor rambled off the information so fast that I didn't really catch it all. He called it something that had a really long name, I think it was cardio-something-scary-sounding-osis. However, I was told not to worry as my echos have always been normal so he thought it may be that the technician was being over cautious. He is going to check with the cardiologist to get a second opinion. I foresee a repeat Echo test in my future.
Other than the Echo and CT scan, there was nothing to talk about as once again, the doctor couldn't find any of the information from my appointments with the CF team.
For those who have asked me recently about the record wait time for a lung transplant, I tried to get the answer from the doctor but he refused to answer. Instead rambled on about how the average wait is 6 months (it's a different average from every person), and that since I'm level one, the wait can take longer (obviously). I repeated my question three times but he just kept repeating that the average wait is 6 months. He could have just said he didn't know.
The doctor reviewed the results from the Echo and CT scan I had done in early June. The CT scan showed an increase of mucous in my lungs, particularly my left lung, since last year. The doctor recommended that I increase the frequency of my chest compressions to try to dislodge some of the buildup. It's not surprising that there is more buildup since last year considering everything that has happened in the past year.
The surprising part of the visit was that my Echo showed that I have a small murmur in my left pulmonary vein. At least I think it was the pulmonary vein, the doctor rambled off the information so fast that I didn't really catch it all. He called it something that had a really long name, I think it was cardio-something-scary-sounding-osis. However, I was told not to worry as my echos have always been normal so he thought it may be that the technician was being over cautious. He is going to check with the cardiologist to get a second opinion. I foresee a repeat Echo test in my future.
Other than the Echo and CT scan, there was nothing to talk about as once again, the doctor couldn't find any of the information from my appointments with the CF team.
For those who have asked me recently about the record wait time for a lung transplant, I tried to get the answer from the doctor but he refused to answer. Instead rambled on about how the average wait is 6 months (it's a different average from every person), and that since I'm level one, the wait can take longer (obviously). I repeated my question three times but he just kept repeating that the average wait is 6 months. He could have just said he didn't know.
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