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I’m not waiting anymore

I’m sick of being sick. It’s not just the cancer. My back problem makes the cancer seem merely inconvenient. The protruding disk is so big it’s almost completely blocking my spinal cavity, and it’s pinching the nerves in there. Bottom line? Severe nerve pain in my left leg, especially when I walk.

So I don’t walk. I lie on my couch, eating painkillers and anti-nausea drugs and anti-inflammatories. I sleep when I can. I read. I think. But mostly I just lie around, waiting.

Waiting for what? Well. This is the crazy part. I’m waiting to either get on a waiting list or to become permanently disabled as a result of waiting too long.

My doctor’s been trying to get me an appointment with either an orthopedic surgeon or a neurosurgeon, but she’s being told that here in Ottawa, orthopedic surgeons have two-year waiting lists. I’m not even on a waiting list yet.

My doctor says my situation is urgent but it’s not yet an emergency. I will be escalated to emergency status when I lose bowel or bladder control, or when I lose the ability to voluntarily lift my toes toward my knee (foot drop, it’s called, and it’s not as innocuous as it sounds).

It’s insane.

I’m going to end up addicted to narcotics because of this. The painkillers don’t eliminate the pain, they just dull it as long as I’m lying down. Walking is still excruciating. The painkillers are addictive, so I have to choose between addiction and constant severe pain. What kind of choice is that?

I’m probably going to lose my house. My severance package will not stretch to cover two years of unemployment, and I won’t qualify for welfare or disability as long as I have a house. I can work, but I can’t commute to and from a job. (I’m looking for work I can do from my couch.)

And then there’s the rest of my body. It’s just not healthy to spend two years lying down. My muscles are atrophying. I was never a triathlete or anything like that, but I’m not cut out for this slug-like existence either. Walking has been my primary form of transportation and exercise all my life. I do my best thinking when I’m walking. I love walking. I need to walk!

I also need to do something about this situation. I can’t just lie here for years, waiting for the health care system to get around to me. I don’t care if there’s a shortage of orthopedic surgeons and the population is aging and operating room time is limited. I need surgery. This is Canada. This is ridiculous.

I don’t believe in a two-tiered health care system, and I don’t believe in jumping the queue. It breaks my Canadian heart to tell you I’m willing to set aside my own values in order to get what I need right now.

If you have any suggestions about what I can do to expedite access to an orthopedic surgeon or a neurosurgeon, please let me know. Who should I be talking to? Politicians? Doctors? Health care administrators?

45 comments to I’m not waiting anymore

  • You could get it done in India.

  • I agree–this is insane. Clearly you’re in an emergency situation right now.

    A couple of possibilities. First (after waiting ridiculously long for an MRI) I was told to write to the head of the hospital involved (Riverside) with a complaint. I was scheduled for a week or so later. Give it a try: start with the telephone, then move to email. Go right to the top.

    Secondly, get the “Public Citizen” guy, Hugh Adami, at the Ottawa Citizen, involved. (publiccitizen@thecitizen.canwest.com)

    Third, find a way of getting admitted to hospital. With my late partner, once she was admitted, MRIs and other tests that people wait months or years for are given immediately, and surgery (in her case a celiac block) takes literally no more than a week to schedule and perform.

    Generally, MAKE A NOISE! Nothing like a little official embarrassment to get attention and results. Squeaking wheel. Grease.

    Best of luck. I’ll be checking in from time to time to see how you’re making out.

  • I agree, show up at the hospital.. When my ex was really sick with Crohn’s we knew who the best doctor in the city was, and he wasn’t associated with our community health clinic and there was no way to see him unless you had a referral and we couldn’t even get that – so we took friend’s advise and just showed up at the ER at the hospital he was associated with. It worked. Go to the ER, lie if you need to, intermittant incontinence (don’t tell them you drank 64 ounces of coffee before it happened). I know I told you a bit about my friend with the same issue – well the complications of the incontinence were – uterine bowel and bladder prolapse.

    Do what you need to.

    Lots of love,

    mudmama

  • Always, when told something can’t be done ask to see the supervisor.
    Minions care nothing about you but they d care if their bosses are going to get involved.
    Call your mpp, your mp, your city councilor,mayor, news station anyone and everyone.
    Finally go ahead and jump the Q tell them you play for the Senators and you’ll be in before you can sneeze.

  • Oma

    Everyone is giving you the best advice, I think. People who are polite are loathe to make a scene … but you have to. People who are honest are afraid to lie to get what they need … but sometimes it is necessary. A friend whose father had early onset Alzheimer’s took the law into his own hands when the powers that be refused any kind of respite care for his aging mother who was wearing out under the strain. He took his father over to the Civic ER and left him there, walking out while nurses were calling out, “Mr. Y. … Mr. Y … You can’t just leave your father here!” They looked after him in the interim and arranged for regular respite care thereafter. Be a pain in the ass.

  • I wish I had some magic answer for you…it’s a very hard situation. Good luck and know that we are all pulling for you and ready to help any way we can.

  • Gillian

    I’ve heard that sometimes hospitals/doctors in other parts of the province have shorter wait times. I suppose you’ve been onto the website of the college of physicians and surgeons…www.cpso.on.ca. All the best.

  • XUP

    Hallelujah! You’re getting angry! At last. You totally need to be angry right now to get on with all the suggestions everyone has given you. Yell, complain, write and/or call anyone and everyone and if that doesn’t work show up at the hospital and demand to be seen NOW! Call hospitals in other cities. Nag your doctor 10 times a day until she gets you some action. Pay someone to fix you up. Just because they call you a patient, doesn’t mean you have to be.

  • Bonnie

    as per Gillians comment…my husband was referred to a specialist in Kingston when he had back problems. It only took a couple of months before he had an appt to see him.

  • It occurs to me that it’s difficult to “take action” when you are in extreme pain, though. How about forming a committee, so that you could outsource some of this work of writing, nagging, phoning, researching? You could even delegate the task of forming the committee.

  • Excellent ideas, thank you. Please keep ‘em coming. I’ve started with a letter to my MP, Paul Dewar (NDP, Ottawa Centre).

    Aggie, I like that….!

  • Delegate to XUP. She would scare the living crap out of anyone trying to give you a vague or unhelpful answer. You could pay her in deep fried tofu, even.

  • Laura Payton

    Don’t discount your MPP. Health is technically a provincial issue, so your MPP is an important contact.

  • Calz

    I am so sorry to hear that you have to go through this. Stand strong and keep fighting even when you feel like giving up. I heard of this hospital in NYC called Memorial Sloan Kettering. I know a few people who have had cancer who have gone there and they said its a great hospital.

  • I want to add my voice to those that say you should GO PUBLIC be loud and just generally make a nuisance of yourself.
    Also, lots of us who read and comment here regularly have blogs of our own and would be willing to help. Want us to organize a campaign on your behalf? Write letters? Go to the media? Seriously – I am sure I am not alone in saying that help is here if you want it.
    And I don’t believe in two-tiered health care either – but when it’s get personal we use the resources that are available to us. Don’t add feeling guilty to the mix.
    xoxo

  • Okay, I’ve written to my MPP, Yasir Naqvi, too. He and I disagree on the proposed SCAN legislation, but he has read my blog from time to time and our face-to-face encounters have been friendly and mutually respectful.

  • Laurie, thank you. If you or any other bloggers want to help me make noise, I’d be delighted.

  • Lana

    You can write, you can express yourself better than anyone I know. People listen to you, make a lot of noise, scream etc. When my husband was waiting and waiting and waiting for the cancer specialist, I started to make a lot of noise. When my friend could not get a special test done, i started to call hospital admin. Please dont just lay down and cry, fight for youself. I wish I could help you, even with some house chores, but I am in Toronto, but If you need to come and have some tests or app. in Toronto, just yell, I will help you. you can stay in my house and I can drive you around. I will even house Duncan, if you need to bring him too. (After all if my house is big enough for 3 cats, we will find a spot for yours too). As for the house, maybe you will have to sell it and move to a rented again, then you will be able to go on welfer if needed. Please look after yourself Zoom.Goodluck.

  • That is insane, I really wish I could do something to help

  • How frustrating and wrong. Together, I’m sure we can be very, very hard to ignore…

  • Demae

    Has your doctor tried to get you an appointment with someone outside of Ottawa. The hospitals in Perth and Smith Falls do orthopedic surgery and I think have shorter wait times than city hospitals?

    There are enough of us who read your blog and are willing to help that I am sure we can get you to a doctor anywhere in Ontario. Just get a referral and we’ll get you there.

  • Convivialiddell

    I’m going to say something that, on a less well behaved comment section, would get me trolled and flamed until the end of time, and I apologize in advance.

    My thing with the jumping the queue thing is that what if you’re jumping ahead of someone that needs the surgery slightly more than you do? If you’re waiting for 2 years, I’ll bet there’s someone on that list that has a small problem, but there is someone that is in that list that has a problem just under emergency status. Maybe that someone ahead of you in line has been trying so hard to make that last dollar stretch to make it to the surgery day, and then you jump, then they get bumped back, then they get to suffer more.

    I love your blog, and I think when I’m older and out of school, I want to be as involved in my community as you, but I’m not entirely sure if it’s “right” to skip ahead in the queue. I know that I probably feel this way because I don’t know you personally and I’m not sick and I’m in the US where you get what you can afford.

    If you really need to go somewhere, and you have the money for it, you can come over the border. It’s really expensive without insurance, but if you can afford it, doctors in the US can work it out for you without an excessive wait.

  • mu

    Convivialiddell, the thing is the waiting list to *see* an ortho has nothing to do with need, it isn’t like cancer treatment.

    Every single professional athlete in this city has a priority spot on that waiting list – the very same doctor employed by the Senators does time working at the Ottawa Hospital.

    I think this is EXACTLY what ER care is for. I’m not sick, and I don’t see using the ER as jumping any queue, no one has assessed Zoom’s need to even place her on a waiting list.

    Zoom, I know you haven’t seen Darkmirror in a while but talk to mom about the huge changes in him. I might still be waiting for answers about what is going on with him – or likely facing the kinds of stuff Tammy deals with wrt her son – if we hadn’t reached the end of our rope and gone to the ER after a horrible night.

    I can’t explain why the ER gets taken seriously and going through your FP doesn’t, but I tend to think it has little to do with gravity of situation and the more to do with how few people have a FP and the ER has become front line medicine, like if you were really sick you’d START there.

  • Go to emergency. I know people who have done that upon suggestion of their GP, in order to get the care that was needed right away. They can’t refuse to see you. AND I support XUPs idea. Let me know what I can do…

  • Oh, I just noticed someone else suggested ER. Two of us can’t be wrong…

  • Gillian

    Another thing is to take care of the finance side before it gets too big. Take a boarder (post a sign at Algonquin and find out what current rates are & for what in return), talk to the bank, tell your son it’s his turn to support you or at least to help. The theory is that by being pro-active, you’re showing that you’re not ignoring the problem.
    Other theme: it may be useful to talk to booking where the referral is. Riverside would be good. And your doctor may need to fax a new referral letter sending you to whoever is available first. (DH got to a specialist in another field really fast through discussion with booking. they were in the process of redistributing one specialist’s workload.)
    All the best.

  • Lana

    To Convivialiddell , it is nice to be so nice, it is not your body in constant pain, it is not your loved one in pain.Easy for you.
    Zoom go to ER, ask GC to take you, do
    not wait, you need to be pain free to be able to beat your cancer.

  • Kat

    I know it’s a 2 hour drive. . but have you thought of http://www.lowbackclinic.com/indexFlash.php. Sorry my linky abilities suck butt. I’ve heard that they are really good but do not know first hand. Maybe they can offer some help?!

    Good luck – and feel better!

  • Lana, thank you. And thank you to everybody who has put forth suggestions, offers and good wishes.

    Convivialiddell, I like it that you felt comfortable putting forth an opinion here that you suspected might not be popular.

    To some extent, I agree with you about jumping the queue. I don’t like the idea that if I am successful, it will be at somebody else’s expense – most likely somebody who is being more compliant and patient than me.

    However, like MU says, there’s been no triaging here. Nobody has assessed and arranged patients in the lineup according to our needs. If they had, I would be far less willing to attempt to jump the queue. I only want to jump ahead of people whose need is less urgent than mine.

    I’ve got to make this one body last me a lifetime, so I have to advocate on its behalf. I can’t sit back and wait for the nerve damage to become permanent and irreversible just because the system is broken.

  • Melinda

    I’m not going to tell you anything new, but I wanted to you to know I’m still reading and thinking about you.

    Short of going private, the ER is your best bet. They can’t ignore you. Tell them you can’t get to the bathroom quickly enough anymore because you’re in too much pain. They’ll have to check into it and you might get this done faster.

    As far as queue jumping is concerned, ask yourself if it will hurt society more for you to queue jump, or if society winds up having to support you because you couldn’t financially sustain prolonged illness on your own. I would bet most people would agree queue jumping is the lesser evil.

  • XUP

    YA! What Stella said – I’m totally down with it.

  • Re finances, you could monetize the blog. And when you get through all this, you could start a new career as a patient advocate, to help others in similar situations.

    This must be your year for one damn thing after another, Zoom. Hang in there – some good will come of it, one way or another.

  • Ms. Army Pants

    Going to Emergency may or may not help you get into the queue any faster but really, you have nothing to lose.
    At least it might be empowering that you went somewhere and tried something that could help.
    You may not jump the queue or get a needed test but they might have another suggestion about your medications or something else that you have not thought of that could improve your circumstances.
    Managing ‘the queue’ or the people in it is not your concern. (although it is admirable that you would think of others when you are suffering so much yourself) You should do what is best for you.

  • jay

    Hi Zoom, I am a friend of Robin’s and was introduced to your blog through him. I have been reading and enjoying it for some time now. Thanks for all your writing. I asked a friend of mine about your problem. She is a nurse who has worked in many different areas of the Ottawa Hospital. She said that going to the emergency department may get your MRI reviewed faster. Because you are not feeling well and won’t be the best person to fight for the best care, I think you should take someone forceful with you to make sure you are a very squeaky wheel. I know that my mother has always told me to pester and pester people and often they will see how important something is to you and get to you faster. My mother is also a nurse so maybe that tells you something.
    Another suggestion my friend was to see an orthopod. I think she meant an orthopedic therapist. She said that her friend’s dad suffers from something similar to your problem and that he saw an orthopod at the Queensway Carleton (not a surgeon) quite quickly. The orthopod’s specialty was managing the pain. She said that the orthopod did a special exam and was able to reduce her friend’s dad’s pain significantly on the spot.
    Sorry that the wait lines are so long for you. It is interesting that if you look at the Ontario Ministry of Health website, it says that the wait time for orthopaedic surgery at the Ottawa Hospital is 306 days (171 at the Queensway Carleton). If you look at the description of how the wait time is calculated however, it says “We track the time between when a surgery is ordered and when it is performed” If you can’t see a specialist for 2 years to get the surgery ordered then the wait times being displayed are not real and should they be allowed to display data that is skewed in their favour? I think this is when it is good for the media to become involved.
    Good luck!

  • Linda Anne

    Re: Jumping the Queue – Hi Zoom – I really feel bad for you – having all this pain etc. I know how slow the system works – I have been on a waiting list for almost a year for foot surgery, but my pain is a drop in the bucket compared to yours. I do know of one person who sort of beat the system. He was desperately in need of a hip replacement and was in terrible, constant pain. His wife would take him to emergency and they would sort him out with pain killers etc. and send him home. It was a nightmare for both of them. When he was being discharged one night, one of the nurses took him aside and told him that the only way he was going to get the surgery quickly was if he went home, waited a few hours and was brought back in to emergency. She told him all this in confidence of course. I guess the theory is that the squeaky wheel gets the grease. Anyways – they did just that – brought him back in three or four hours after being discharged. They were quite vocal that he needed surgery and it happened a few days later. I think that it would be worth a try, and I would not feel bad about jumping the queue. You have been through so much and need a bit of a break from the system!!

    Cheers – Linda Anne

  • Julia

    I have been thinking about this since I read the post and felt terrible for you. I see you have got lots of great advice. The only thing I can think of is to talk to someone like Dr. Arnaout who is aware of your disc condition and see if your future treatment for the breast cancer will be compromised by the disc thing. You haven’t got the full pathology back yet but if you have to have more treatment, it might have to be delayed or lessened because of the back thing. If you can get the back fixed first, then you will be ready for the treatment. I would use the key words “compromised cancer treatment” to get attention.

  • grace

    I think Julia offers great advice. ‘Compromised cancer tretment’ is weighty.

    Dr. Aranout is asscociated with the QCH? S’s third hip replacement was done there; it was a complicated affair and done with better than expected results. Though at this point you might go 500 steps in a cat carrier for a chance at surgery.

  • These things are interrelated – STRESS – emotional stress – has a profound effect on disc issues and on cancer outcomes.

    If it wasn’t for the stress of the breast cancer diagnosis and wait for treatment your back might not have gotten this bad so quickly.

    If it wasn’t for the back pain and wearing down of your immune system through chronic pain your breast cancer treatment would be easier to get through.

  • Nat

    Number of things…

    I’m not sure what kind of doc you need, but Ottawa’s wait times are not good. (In fact , they are consistently the worst in the province.) Certainly asking your oncologist to go to bat for you is a fabulous idea.

    With the emphasis on hips and knees, fewer other surgeries are being done. However, if you don’t need specialized care — leaving the Ottawa area might get you surgery faster. Check the site, if you go to a 250K you can see some pretty low wait times. (This is also dependent on the complexity of the case — if this straight forward a smaller community hospital might be able to handle it.) Smithsfall and Brockville are close-ish.
    http://www.health.gov.on.ca/transformation/wait_times/public/wt_public_mn.html#

    Now, the two year wait list does not apply to all orthopods, ask for a bigger list. There is no registry, so call around. Some newer docs can see you much more quickly. It sounds like your doctor doesn’t know how to navigate the system. I know former NDP candidate Marlene Rivier used to act as a “health care consultant” and help people navigate the system. (No contact info.) She might have some advice as well.

  • Crawl into the emergency room howling and crying. Truly.
    Get some attention.

  • XUP

    This is so great – all these suggestions. The common thread is “squeaky wheel”. I know that’s pretty far down on your list of personality traits, so be sure to take the squeakiest wheel you know with you when you go. Meanwhile, if you need it, someone on my blog posted a link to Trillium which is set up to assist people who do not have private insurance to pay for drugs; http://tinyurl.com/nokq4t

  • Thank you very much to all of you for your help. Excellent suggestions. The common thread does seem to be the squeaky wheel angle.

    At this point I’ve written to my MPP and my MP, but haven’t heard back from either of them.

    But there has been some small measure of progress. I got a letter from my doctor’s office yesterday. They’ve referred me to a neurosurgeon, who, apparently has accepted the referral. His office will be contacting me to set up an appointment (“Your patience would be appreciated,” the letter says, “as wait times vary.”)

    So now I’m waiting to get an appointment with a specific neurosurgeon. I have no idea how long his waiting list is, either for initial appointments or for surgery.

    I’ve learned quite a bit about wait times over the past few days. Each doctor has their own wait list. Wait times are calculated, as one commenter pointed out, from the day the specialist deems that you need surgery, until the day you have surgery. In other words, my waiting period hasn’t even started yet, even though I’ve had this problem for almost five months and have been seeing my doctor about it for four months.

  • Lo

    The system here is more than flawed. As I tell my American friends, we have ‘free’ health care at a cost-a cost of quality of life and in some cases and waits, it costs us our lives. Everyone is giving great info here.
    Exaggerate symptoms-you HAVE too
    Call people
    Show up and Exaggerate
    Try another province…

  • Lo

    what C said up above
    if you can get U.S. surgery and get reimbursed that would be good!
    Also, Many are jumping queue as I don’t even think the queue is that orderly and again, Ottawa has the worst wait so go elsewhere!

  • what Nat said – I know of someone who didn’t even bother with Ottawa and went straight to Smiths Falls with very little wait time.