04/25/15 - So, I decided to take advantage of the FREE counselling service available to cancer patients in my province. Ideally, I'd hoped for group counselling to further share experiences with others who've gone through this same journey. But, of course, as my tattoo declares, I am "one of a kind" or at least one of very few. Myxoid liposarcomas are so rare there are no in-person support groups available, only individual sessions. My stress levels decreased slightly since learning it appears NOT to have spread, so I nearly didn't go to the individual counselling...BUT...a conversation I had with a manager at the Canadian Cancer Society changed my perspective.
She mentioned that although I'm doing relatively okay right now (and I do mean relatively, every day is still a constant uphill battle), there will likely come a time where I feel the need for extra support beyond friends, family & online support groups. So, heeding her advice, I went to my appointment, and I'm glad I did. She gave me practical advice on dealing with work & insurance concerns I had, and she gave me a few brochures re: support services available in addition to counselling. For instance, there are courses cancer patients can take re: managing stress & relaxation, yoga, meditation, etc. She also mentioned that her door is always open, as the free counselling for cancer patients is available for eight years if needed. Be sure to check in your area to see if similar benefits are available. I am so glad I live in Canada!
To my delight, the first pamphlet is available online, so I'll post the link below. If I find any of the others online, I'll be sure to add to this list.
The Emotional Facts of Life with Cancer: A Guide to Counselling & Support for Patients, Family & Friends: http://capo.ca/docs/bookletREVISED.pdf.
As for the lack of group support specific to myxoid liposarcoma, I was eager to take advantage of Cancer Connection's detailed peer support matching program. Wanting to make the best of an extremely challenging situation, I figured it'd be the next best offline alternative outside the Facebook group I found, and I was right. What they do is get a few details about your type of cancer, the journey you've been on so far & your current situation, and then they do their best to match you with someone whose experience has been similar to yours in as many ways possible.
Ever the realist, I suspected they'd have a hell of a time finding even someone with ANY type of liposarcoma never mind the *myxoid* variant, and indeed this was the case. However, do not let this discourage you if you're suffering from one of these rare cancers no one's ever heard of. What they did instead, was find three volunteers for me to choose from, of which I chose two. The first one had sarcoma in their leg removed via surgery but no other treatment, while the second person had a sarcoma in their foot, surgery & radiation. Both sarcomas they had were also very rare. So, between the two of them, I was able to get a lot of questions answered & find commonalities despite having different types of sarcomas. And it wasn't just a quick chat either. Combined, I spent a good 2.5 hours of my Saturday afternoon chatting with them. Words cannot express how grateful I am to both of them for not only taking time to talk to me but for sharing a very difficult period in their lives. Once I've come out the other side of my sarcoma, I will seriously consider giving back by signing up to be a peer support volunteer myself.
*[NOTE: The title of this post was inspired by the Placebo track "Without You I'm Nothing" from their album of the same name.]
Showing posts with label counselling. Show all posts
Showing posts with label counselling. Show all posts
Saturday, 25 April 2015
Tuesday, 21 April 2015
A Million Little Pieces Come Together - Results Day #2.
04/20/15 - After much waiting & a week's delay, I finally got my consultation to discuss the results from all the many, many tests I've had over the past two months, especially those over the past two weeks. To my relief, the news was mostly good, though I'm not completely out of the woods yet. There was so much information covered today, there's no way I'll remember it all to share here. They estimated the consultation would take approximately two hours - we were at the hospital for nearly FIVE! That being said, here are some of the more important highlights. :)
First, I have a stage three 25x12x8cm tumour, which currently does not appear to have metastasized. [EDIT: I later learned speaking directly to my oncologist that the resident doctor screwed up, and I was actually stage 2B, GRADE 3, 25x13x8cm!] However, indeterminate spots WERE found in the bones of my abdomen & spine, plus another unusual spot was found on one of my ovaries. Now, before you panic - I sure did! - the abnormalities found in the bones of my abdomen & spine can also be found in people who do NOT have & have NEVER had cancer, BUT due to the fact that I do have cancer, they have to be vigilant. So, for now, my specialist is not overly concerned but will continually monitor them. As for the ovary, that's another story. Yep, here comes one more test (an ultrasound) to ensure it's nothing to worry bout. It's possible it could be related to surgery I had 10 years ago, so it may not be significant, but again, better safe than sorry. So, that'll be checked out prior to starting my treatment, which has been further delayed. Looks like it'll probably be another two weeks now. I'll also need to go in for a more in-depth radiation planning session, where they'll determine the best way to go about the radiation, such as position of my legs, etc.
So, to better cope with all the endless waiting, stress & yet more delays, I've decided to take advantage of the hospital's individual & group counselling services, in addition to the closely-matched peer support volunteer available through the Canadian Cancer Society. They also gave me info on courses patients can take through our local cancer centre. Haven't had a chance to look through them yet, but once I have, I'll share more info if they seem useful. Speaking of which, one very useful service they have on offer is a volunteer driver service to get patients to & from appointments. It's not only free but it's more flexible than the city's shared ride service for people with disabilities, as you don't have to worry about missing your ride home, should your appointment run longer than expected.
In addition to meeting with my orthopaedic oncologist again, I also met my radiologist for the first time, along with the respective resident-physicians for both specialists. Think of the residents as extensions of your primary medical team who fill in the gaps when your primary specialists have other patients to attend to, etc. It was here where I started to get more answers re: treatment & its short-term & long-term side effects. Now, keep in mind, everyone's different, and not everyone gets the same dose of chemo or radiation, but this is what they're expecting in my case...
Chemo therapy - Despite the low dose & short duration I'll he receiving, there's still an 80% chance I'll lose my hair but only on top of my head. It is rare for patients to lose ALL their hair (eyebrows, lashes, etc.), although it can happen occasionally. Despite being well aware hair loss was likely, the high percentage rate sure threw me for a loop! They also expect fatigue to be an issue, in addition to bruising more easily, risk of infection, nausea, change in appetite & taste.
Radiation - One of the most significant side effects will be skin soreness, irritation & peeling comparable to that of a sunburn.... My skin will also become darker in colour & become tighter. Other side effects are likely include fatigue & mouth sores. Due to the many changes to the skin, they recommend regularly using powder, such as baby powder, in addition to a medically prescribed cream. Fortunately, they don't anticipate blistering in my case. Here's hoping they're right! Given the large size of my tumour, feeling as if I have a sunburn on the posterior & side of my thigh will be more than enough to deal with, thank you very much!
Long-term side effects to keep in mind after treatment will be an increased risk of fracture years down the road due to the tumour removal occurring so close to my bone, as well as the possibility of secondary tumours due to the radiation. They said these secondary tumours occur in 25% of the individuals, and if cancer were to reoccur, it would most likely be in the same site as my original cancer. For the first two years once I'm cancer-free, I'll have to be checked every three months. Then for each of the five years thereafter, it'll be every six months. While this sounds like a lot, I'm being assured that my work's insurance company will be required to consider this all as part of my original claim, and thus I won't lose a bunch of sick days over all those appointments. :)
Recovery time will largely depend on how well my tumour responds to radiation & how the surgery goes. It could take anywhere from one to three months to recuperate from the surgery alone. It is up in the air how much physio therapy will be required, as this will be determined by how much surrounding tissue they'll end up removing. What I do know, is regardless of this, a large chunk will be removed from my leg, and it'll look as though someone took a bite out it. Fittingly, the in scission will be large. They are going to do everything they can to preserve the nerves & muscle surrounding the area but it's impossible to say that this point what the outcome will be. That being said, I did ask about my eventual ability to once again stand for long periods of time at, say...a general admission concert gig. Come on, Y'KNOW this question had to be forthcoming! ;) The resident physician said although the muscles in that leg will always be weaker, chances were promising, but of course, no guarantees. Only time will tell! Better start compiling my physio-workout music playlist now, haha! 2016 20th Anniversary Tour, here I come!!! Even if I have to waddle like a duck, I'll be there, someway, somehow!!! ;-)
*[NOTE: Post title inspired by Placebo's song "A Million Little Pieces" off their 2013 album, "Loud Like Love".]
First, I have a stage three 25x12x8cm tumour, which currently does not appear to have metastasized. [EDIT: I later learned speaking directly to my oncologist that the resident doctor screwed up, and I was actually stage 2B, GRADE 3, 25x13x8cm!] However, indeterminate spots WERE found in the bones of my abdomen & spine, plus another unusual spot was found on one of my ovaries. Now, before you panic - I sure did! - the abnormalities found in the bones of my abdomen & spine can also be found in people who do NOT have & have NEVER had cancer, BUT due to the fact that I do have cancer, they have to be vigilant. So, for now, my specialist is not overly concerned but will continually monitor them. As for the ovary, that's another story. Yep, here comes one more test (an ultrasound) to ensure it's nothing to worry bout. It's possible it could be related to surgery I had 10 years ago, so it may not be significant, but again, better safe than sorry. So, that'll be checked out prior to starting my treatment, which has been further delayed. Looks like it'll probably be another two weeks now. I'll also need to go in for a more in-depth radiation planning session, where they'll determine the best way to go about the radiation, such as position of my legs, etc.
So, to better cope with all the endless waiting, stress & yet more delays, I've decided to take advantage of the hospital's individual & group counselling services, in addition to the closely-matched peer support volunteer available through the Canadian Cancer Society. They also gave me info on courses patients can take through our local cancer centre. Haven't had a chance to look through them yet, but once I have, I'll share more info if they seem useful. Speaking of which, one very useful service they have on offer is a volunteer driver service to get patients to & from appointments. It's not only free but it's more flexible than the city's shared ride service for people with disabilities, as you don't have to worry about missing your ride home, should your appointment run longer than expected.
In addition to meeting with my orthopaedic oncologist again, I also met my radiologist for the first time, along with the respective resident-physicians for both specialists. Think of the residents as extensions of your primary medical team who fill in the gaps when your primary specialists have other patients to attend to, etc. It was here where I started to get more answers re: treatment & its short-term & long-term side effects. Now, keep in mind, everyone's different, and not everyone gets the same dose of chemo or radiation, but this is what they're expecting in my case...
Chemo therapy - Despite the low dose & short duration I'll he receiving, there's still an 80% chance I'll lose my hair but only on top of my head. It is rare for patients to lose ALL their hair (eyebrows, lashes, etc.), although it can happen occasionally. Despite being well aware hair loss was likely, the high percentage rate sure threw me for a loop! They also expect fatigue to be an issue, in addition to bruising more easily, risk of infection, nausea, change in appetite & taste.
Radiation - One of the most significant side effects will be skin soreness, irritation & peeling comparable to that of a sunburn.... My skin will also become darker in colour & become tighter. Other side effects are likely include fatigue & mouth sores. Due to the many changes to the skin, they recommend regularly using powder, such as baby powder, in addition to a medically prescribed cream. Fortunately, they don't anticipate blistering in my case. Here's hoping they're right! Given the large size of my tumour, feeling as if I have a sunburn on the posterior & side of my thigh will be more than enough to deal with, thank you very much!
Long-term side effects to keep in mind after treatment will be an increased risk of fracture years down the road due to the tumour removal occurring so close to my bone, as well as the possibility of secondary tumours due to the radiation. They said these secondary tumours occur in 25% of the individuals, and if cancer were to reoccur, it would most likely be in the same site as my original cancer. For the first two years once I'm cancer-free, I'll have to be checked every three months. Then for each of the five years thereafter, it'll be every six months. While this sounds like a lot, I'm being assured that my work's insurance company will be required to consider this all as part of my original claim, and thus I won't lose a bunch of sick days over all those appointments. :)
Recovery time will largely depend on how well my tumour responds to radiation & how the surgery goes. It could take anywhere from one to three months to recuperate from the surgery alone. It is up in the air how much physio therapy will be required, as this will be determined by how much surrounding tissue they'll end up removing. What I do know, is regardless of this, a large chunk will be removed from my leg, and it'll look as though someone took a bite out it. Fittingly, the in scission will be large. They are going to do everything they can to preserve the nerves & muscle surrounding the area but it's impossible to say that this point what the outcome will be. That being said, I did ask about my eventual ability to once again stand for long periods of time at, say...a general admission concert gig. Come on, Y'KNOW this question had to be forthcoming! ;) The resident physician said although the muscles in that leg will always be weaker, chances were promising, but of course, no guarantees. Only time will tell! Better start compiling my physio-workout music playlist now, haha! 2016 20th Anniversary Tour, here I come!!! Even if I have to waddle like a duck, I'll be there, someway, somehow!!! ;-)
*[NOTE: Post title inspired by Placebo's song "A Million Little Pieces" off their 2013 album, "Loud Like Love".]
Subscribe to:
Posts (Atom)