I Am Doing The Toronto Walk For Women's Cancer
I have made my commitment to the walk now. The dates of the walk are September 11th and 12th, 2010. I have created a team as well and I am currently recruiting team members, so if you care to join me on the walk you can sign up through my donation page to join the team.
There is a fund raising commitment you have to meet, but I will do my best to do several fund raising events for the team over the summer, so our team goal will be met by the group as a whole.
My intention is to ask for donations from anyone who cannot participate as a team member, plus hold at least one big fund raising event to help the team.
Personally, I will have a lottery for my donators. I will create some One-Of-A-Kind fibre art or Steampunk Jewelry pieces to be given as draw prizes for the donators. Every donation will give a person one ticket in the draw. There will be several prizes.
I will also have a lottery for those who sign up to be a team participant.
I posted the info on Facebook first, and the first person who made a donation through the link to my donation page won One-Of-A-Kind Collectible for being first! Congratulation Tere A for being #1!
My donation page has a mini blog on it and I tell my Cancer Survivor story there
Click the picture below to see it all.
Friday, April 30, 2010
I Am Doing The Toronto Walk For Women's Cancer
Thursday, April 29, 2010
It is Official I am Joining the Walk for Women's Cancers!
Below is a copy of a letter I just got announcing a discount in the fundraising requirement for those who sign up to do the walk BEFORE MAY 1ST.
If you are seriously planning to join me in the walk, I suggest you take advantage of this discount for your registration.
I will be setting up my fundraising site tonight or tomorrow and I have already made my commitment to the cause. If you want to be part of my team I will call it Motivated Motion. Please take advantage of the discount and sign by Friday night! Hope to see you on Sept 11 and 12th!
Thank you for requesting information about the Shoppers Drug Mart® Weekend to End Women’s Cancers™. We’ve expanded our mission to help fight all women’s cancers. That’s where we need your help by registering today to help fight these terrible diseases that affect us all. You’ll be part of something that’s changing the lives of so many people by raising critical funds and spreading awareness in your community. Even better, register between today and April 30th and we’ll give you your first $100 fundraising credit to help kick-start your campaign.
If you want to learn even more be sure to check out one of our Get In Step sessions – there you’ll also meet other walkers in your community and pick up your free t-shirt when you register. Bring your friends and family - all are welcome, and while you’re there be sure to get them on board with you! As part of our new incentive program this year, you’ll receive a $100 fundraising credit (up to a maximum of 5) for every new walker you recruit. That means you can earn up to $500 towards your goal.
Visit the link below or give me a call back to RSVP for one in your area today:
I look forward to speaking with you soon!
Wednesday, April 28, 2010
20 Days........And I am not Myself
And Find Out How I Got F'd Over by Ontario Healthcare!
My surgery was a piece of cake, and my recovery remarkable....yet......I don't feel too great.
Twenty days ago I had my right ovary removed in a two surgery, triple procedure.
I did really well right after the surgery and I healed up great too, yet I seemed to be plagued by a strange fatigue. Until the last couple of days I thought it was just me being older plus me also having my second surgery this winter as the reason I felt so low, but I am thinking now that it might be an infection....I just don't know if it is surgical or perhaps sinus.
My suspicions red-flagged when my blood sugar suddenly went up right after a week of barely keeping it up enough, so I will be heading for some tests today to see what is up, then I will see the Dr. on Friday to get a check once my test results come back.
I think that it is actually a residual infection from a bad environmental allergy attack I have been having all week, but I have to be a good girl and cover all the bases before I relax.
The fatigue I have is so bad that if I increase my activity level just a little my whole body will react with huge sighs. It is crazy! And yet I still have the same trouble as ever falling asleep, so I sit like always, up late at night on the computer, trying to stay out of trouble. LOL
Right now I am frustrated. I want to be training more for the walk for womens' cancer, and I want to be gearing up to re-open the shop, but I just don't have the energy.
So I think I will be playing it week-by-week for a bit longer, as I don't want to get the shop in full-swing, only to have to stop again because of a set-back. As much as it pains me to keep the shop closed longer, I think I need to really have a serious look at my situation and not rush myself back into the hospital because I went back to the fast pace of life too soon.
I am still not monitoring my feeds or emails too closely, so if you really need to get my attention to something, or you need a reply from me, I suggest you call and leave a message. Otherwise please be patient......................
We had to get nursing care for this recovery, as with the abdominal surgery and the frozen shoulder I am litterally trapped in bed when I wake up. So the nurse comes in and helps me get up and monitors my first meds and blood sugar stuff while I am groggy. She helps me get showered and dressed and keeps me safe in the first two hours of my day. I am not on any pain meds in the day, but my meds from bedtime take a while to wear off, and they make me forgetful at the crucial time when I need to remember that I took my diabetic meds, or checked my sugar. I think going under general anesthetic made the forgetfulness more prominent each morning, and I hope this situation is only temporary.
We never did get CCAC. Basically the socialized homecare that was created to lessen the burdon of recovery time on the hospital, and bring the patient to homecare right away is now gone the way of the D0do. Now CCAC mandate as of December 2009 is only to provide homecare if you are over 65 and or near dead, and if you are dying they pass you off to hospice. CCAC tells you that Chats will help Aquired Brain Injury Patients with rides to therapy and care, but this too is untrue. Chats new mandate is only to help senior citizens now and no one else.
So what does this mean? It means that the Ontario health care system is no longer providing extended homecare to regular post surgical patients even though the Hospital system is still under the expectation that EVERYONE will get homecare for recovery at home-because the Hospital system has not made any provisional changes to their discharge program for post surgical care.
There is a CCAC points system and now some Senior Citizens would also not meet the points criteria for the new mandate, so they too will get no care.
Who gets homecare now? Refugees, Welfare Recipients, and Senior Citizens that have no savings. Who loses? The middle class family with two adults working making a decent wage for over 25yrs, or Senior Citizens that worked damn hard for their money and did a good job of saving money for retirement
We- the middle class get F'd over again. Almost 50 yrs combined of my husband and I contributing to the Provincial system to the maximum the Province can take ( with which Fed and Provincial taxes takes a total of 62% of our total gross income ). But those who did not contribute because they sat in Ontario housing forever and only worked long enough to collect the minimum unemployment benefit and were never productive members of society- and spent all their free time at the bar or the race track or in prison pass the points review from CCAC and get everything on a platter!
I retired from my great career for medical reasons and all I get is a CPP benefit of $564.72 a month. The part of my medications not covered by insurance is over that per month!
For years and years we paid the maximum anyone can pay into the system. I never even took a baby bonus or GST cheque or child tax credit EVER, and I get screwed by my own Province when I get sick. My husband and Sons are exhausted from trying to help me more and more since September when I injured my shoulder and then through the December and April surgeries, and I got nothing and no aid from an agency we have had to pay to through our taxes all these years to receive no benefit from them.
Guaranteed, when I get my energy back and I going to be the loudest one-ovaried bitch to ever walk into Queen's Park, and I am going to become the thorn in healthcare's side. As far as I am concerned CCAC is in abuse of patients coming through the hospital system since they changed their mandate, as there is no provision in place to do a step-down of care for a patient who is sent home within 24hrs of surgery from everything to ovary removal, cancer surgery, plastic surgery etc., and up until Dec 2009 there was.
Hear this! I had a cancer excision vulvectomy on Dec 2, 2009 and I didn't even qualify for an Occupational Therapist assessment after my surgery ( and homecare says all cancer patients get care-bullshit!). I was put on a waiting list from January until my second gynecological surgery in April 2010, when because of my abdominal surgery which only successfully removed one ovary when the removal of both was necessary. So I finally got off the OT waiting list only to continue to stay on the RPN requirement waiting list.
Who ever heard of someone having surgery and then be on a waiting list for post surgical care!? WTF!
When someone has surgery the need for homecare is immediate, it isn't dynamic! And if you require assistance to get up or take care of hygiene it is a NO BRAINER that the care needs to be established and in place at the hospital before the patient leaves. Now the hospital assessor comes and then says that they will get the ball rolling which means they will pass you off to yet another person who wastes an hour of your time asking the same questions as the other, yet carefully logs all of your answers into their own computer ( so they can get paid for wasting your time!). All of the assessors are more than happy to spend an hour with you asking about your inabilities because they get paid! Not because they are going to help. Nope...no help....just more fuckery to really mess with the patient and their exhausted family, and make yet another contact you can call to get no help.
So what did I get for 4 one hour pre-assessments?(BASICALLY SOMEONE GOT PAID 4 TIMES TO FILL OUT THE SAME QUESTIONNAIRE) I got tired.....
I also got an occupational therapist to come to my home to help me figure out how to
A) get out of bed without the risk of pain that will cause me to black out [which I have done 8 times in the last three months-and that was only counting the times I blacked-out and hit the floor. Many -a- day I black-out 4 times in bed trying to get up ]
B)get a bra on -the only answer to this was no bra, or a nurse as the tool to help is no longer available
C) wipe my ass without blacking-out cuz I can only do it with my bad arm......and that reach around for a sparkle clean sphincter causes a nerve pain so bad I will hit the floor writhing in pain, trying to breathe through the pain while swearing the worst loudest stuff ever!
So this pain issue with the shoulder escalated after the first Surgery on December 2nd, and I was wait-listed for that OT until April 9th when she came! How the fuck does CCAC think it is ok to put a patient through that!?
So what did I get from the OT?......nothin
I got suggestions of stuff I could buy and try! Yep.....buy. And I could not even order it through her. My care person had to leave my side when I was still recovering to go find medical supply stores that would have the stuff. Then he could order it.
So we had to spend a lot of money to get me some aids, and the ass wiper is mediocre but can't be returned-obviously and cost almost $60.00! We had to rent a shower rail and seat, and we had to order a bed ladder which has apparently arrived at the supply store, but I can't drive to get it and my care givers(Hubby and Sons) are now back working so they don't get fired from their real-life jobs, and now cannot pick up until the weekend.
The OT also suggested we ask our personal medical insurance about private nursing coverage.
We got it!
Yep we got private nursing coverage supplied by Bayshore Nursing services. I get an RN or RPN for two hours a day, 5 days a week from a minimum of $25,000.00 to up to a Million dollars in coverage per year at 90%. It sounds fabulous!
Clinker is: I have to pay the service out of my own pocket first and then submit the paperwork to get 90% of it back. I am gonna assume it will be a horrible amount like $200.00 an hour!
That way of paying would be fantastic if I had not been medically retired since 2005 collecting my pittance from CPP exhausting all of our savings on previous medical care, physio therapy for my stupid shoulder, foot orthotics, prescription shoes, CPAP machines and supplies, diabetic meds, maintenance and supplies, stupid parking at hospitals like Southlake, Sunnybrook, Woman's College Hospital, Toronto General Hospital, Scarborough General Hospital, Toronto Western Hospital where I end up paying $18.00- $32.00 dollars to park each day, for monthly Specialist Appointments, medical procedures and surgeries.
And... we have two kids in post secondary Education to boot!
Could you do it? Do you have enough money in the bank to pay the bills our socialized medicine does not provide for any longer? Could you pay thousands of dollars of nursing fees out of your pocket first?
Does your current mode of Medical Plan cover all your meds? If your plan didn't cover a med you needed and had no alternative to get and it was $300.00 a month out of your pocket could you pay it? Could you continue to pay it for 5 or more years like me?
Since 2005 we have had to utilize over $200,000.00 of our savings because of my medical retirement. It is like the past 25years of savings never occurred. So our retirement will be some locked investments and equity from the house....that's it. It is that "Son-of-A-Bitchin', kick-you-in-the-ass-kind of, life-sucking" event that will definitely make you cynical
Sucked freekin dry!
I thought the benefit to working hard and honest and paying all the taxes was to have some benefit when I need it. Well I am very unsatisfied with the health services I have paid for within 62% of our yearly gross income going to taxes- ever since my first full-time job after graduating college. I never even got maternity pay, or baby bonus or GST or Child Tax Credit. We just paid and paid and got no socialized benefit at all!
I want a refund! And I will become the biggest thorn in the side of Ontario health care until they give me my refund! I have spent 46 years in gal training to throw me at their phone lines, and emails. I will become fucking loud! If you don't think your life could handle a huge hit to finances because of medical care issues, and there is no way you could afford to subsidize your life from your savings in a medical emergency then you need to get fucking loud too!
Ontario Healthcare has failed to provide me with the level of care I required for quality of life issues like hygiene, mobility and medicating for a chronic illness BECAUSE WE EARNED A GOOD HONEST LIVING AND ARE MIDDLE CLASS, so I want a refund for all of the years I paid into that service with an expected high rate of care and got zero care. I didn't get what I paid for......I want a refund!
Friday, April 09, 2010
I Am Home
I was released from the hospital on Thursday morning.
I dumbfounded the surgeon by requiring no pain meds after the surgery.
I was given a morphine pump and only used it one shot on the test of the pump and that was it.
I proved that the perfect pain management program can get a patient moving after surgery as well as treat a chronic pain issue.
It opened up a question in the Surgeon's mind about whether Lyrica may be a good pre op and post op pain med to deal with the terrible gas pains in the muscles of patients that get Laproscopic surgery. The gas permeates the muscles causing cramping especially in the shoulders and back.
This cramping makes it really hard for the patient to get up and move, thus making it hard for them to begin to get the anesthetic out of their system. Not moving puts patients at risk for blood clots and bruising.
I had no pain. None!
I was just a little stiff, and I was able to get up and walk really soon after surgery, and I was able to drink lots of water too which helped my kidneys stop bleeding.
So the surgery was long. About three hours.
I was fortunate to have a scope and they used 4 or 5 puncture areas on my abdomen.
There was a lot of scar tissue which was bonding everything together in the bowel loops.
The gynecologist was only able to successfully remove my right ovary. It had two cysts on it. The left ovary is really stuck to my bowel and ligaments of my back, and the Dr. felt it was really risky to go in after it as it would have taken at least two more hours of surgery to get it. The Dr. has the one ovary to get pathology on, but the look of the cysts did not indicate they were cancerous and they were not endo tissue which means I won't have to worry about any necrosis.
It was a case of terrible scar tissue and two trapped cysts on an ovary that has seen better days.
The Dr.'s were very receptive to me using hypnosis to help walk through the surgery process step by step and envision low blood loss and quick healing and balanced blood pressure and heart rate. They talked to me when I was out to tell my subconscious my BP and Heart Rate, and I kept them both calm and steady the whole way through.
It is funny about the kidney hemorrhaging.....I had a vision about it when I started the self hypnosis that day.
The bladder repair is not giving me any trouble. So if anyone is toying with the idea and is nervous.....it does not feel bad to pee at all. I feel bruised in my groin and in the joints of my legs. My lower back is a bit tender, and my bladder feels a bit bruised. Not a bad pain bruise feeling, just a bit sensitive bruised feeling. Also this surgery was my first experience with a bladder catheter, and it was not a horrible experience. It actually takes a lot of stress off the patient because the urgent need to pee after surgery is removed which improves the patient's morale greatly and takes away a huge stressor: the need to pee badly and no strength to get yourself to be able to move independently to a washroom is a horrible stressor post-op.
The Dec cancer site was re-biopsied and that came back clean this time so for now I am once again a success story.
Today I was exhausted by the trip home. Which is like a 5 min car ride...
I slept most of the day, and missed dinner with the family.
I ate mozza ball soup and italian wedding soup today.
I have had lots of tea and mineral water too.
So you know I am alive and that it was a tough surgery but not the worst case scenario......so a positive end.
We will figure out how to deal with the left ovary if it becomes an issue. If the cysts are just poly cystic type cysts then if the left ovary is a pain the another surgery is a risk at the time, we could probably just give me an estrogen blocker like tamoxifen to throw the ovary into full menopause and shrink it.
I find I get sore if I sit or lay in one position too long so I probably won't be doing much, and whatever I will feel up to do will be in spurts. I even took a nap in the middle of posting this LOL.
I have restrictions on what I am allowed to do for a month.
Posted by Lynn at Friday, April 09, 2010
Tuesday, April 06, 2010
Watch the Facebook Feed and the Twitter Feed Here to See Hospital updates from my Cell Phone
Posted by Lynn at Tuesday, April 06, 2010
Well on Wednesday morning at 6AM I will go under the knife once again.
I am sure I have broken some record for number of abdominal surgeries in a lifetime.
I am sure too that I have definitely made it into a top squad for Gynecological surgeries.
On Wed I will go into hospital for at least over night to have my ovaries removed, two stints put into my kidneys', and to have my bladder repaired, and to have the cancer site re-excised.
I cannot believe that I have to go in again!
This time we have no idea what to expect when the team of Dr's go in, as I have some serious medical issues to deal with as a result of having so many abdominal surgeries. I had endometriosis in the past, plus I build scar tissue really badly, so a simple procedure can turn really messy with me.
It seems that my ovaries are a mess. It is a guarantee one ovary is coming out and it is possible the second is too. Why there are questions as to what will happen......is because the surgeon just does not know if he can get both ovaries and keep my bowel and kidneys in tact.
Best case scenario is they go in and can get the ovaries out with a scope no problem.
Worst case scenario is they could go in and find endo tissue messin up everything, and that could mean losing part of my bowel and one or both kidney's, plus a scrapping of the scope for an big slice down my belly.
What we think is going on is a really bad case of poly cystic ovarian disease, as my ovarian cancer screening test came back fine.
None-the-less my ovaries are really cysty and enlarged. I have been having back pain to the level of back labour since 2008. The delay on this situation was because a pelvic ultra sound in May of 2009 revealed nothing, but we think now it was a botch, as two recent ones after an alarming back MRI which found the cysts showed both ovaries a mess.
Most likely I am dealing with chocolate cysts, which are endo tissue growing on the ovaries causing them to go lumpy.
I told the Dr last year that it felt like I had an abscess on the inside of the bone of my pelvis at the back. It was a bit higher than regular gyne pain so I thought it might be my kidney. What I didn't realize was that my ovaries have moved to my back and up high nestled into my bowel loops, as a result of having a hysterectomy in 1993.
I have closed my Etsy shop until April 20th, and I want to also warn folks that I may not be returning email until that time either.
Cam will do his best to update my facebook and this blog as soon as there is anything to say.
Keep your eye on my twitter feed and facebook feed on the sidebar here for updates from my phone. If I think about it I will put the facebook and twitter widgets on the next post....just before I go to the hospital.
I will be at Southlake Hospital in Newmarket for one to four nights.
If I am in for more than one night, it means the surgery was extensive and very complicated and my condition could be grave, so I would rather folks talk to Carl before they decide to head over to the hospital, as I may not be well enough to have visitors.
I could have lots of tubes in me and I could be on dialysis.
Here is a crazy basketball sized ovarian cyst removal!
Posted by Lynn at Tuesday, April 06, 2010