Hi Lisa
Sheina gave me your blog site on my last visit with her. I will be getting the DIEP soon.There is a problem trying to get VGH to give the OR time. I will have to contact my MLA and complain.We have a good surgeon waiting to do her best work and it's blocked by the fact they will not open the OR for the time needed. Also the surgery is needed within 4-6 weeks after my radiation and they can't get a date yet,it's frustrating and stressful.Anyway the reason I am contacting you is to thank you for your blog, it gave me information I would not have received any where else. Good luck in your recovery.
Colleen Carpenter
Doesn't that just frost your ta-ta's? Colleen has to wait for a date for surgery. This is invasive cancer we are talking about here people! Sheina was sent to learn this new DIEP procedure and now there isn't any OR time to perform it! It prevents numerous surgeries for the patient! If this is about money - one surgery vs 2 or 3 saves time and money for everyone. The recovery is half the time of the traditional TRAM and the results are phenomenal!
Now Collen has to contact her MLA?? Come on! Like she doesn't have enough to worry about! I am furious! Is there anyone who has any ideas to help out this cause? I have asked Colleen for her MLA's address and I think we need to write a few letters folks to assist her (and many others) to get the care they deserve!
4 comments:
In my inaugural guest-shot here, I ranted at length about the “Importance of the Team”. While I wasn’t happy with the way I finished the entry, the thrust of the argument applies: the “team” is important for dealing with the system – not the cancer.
(a) THE IMPORTANCE OF THE NETWORK I: Lisa had access to good medical care because her personal network put her in contact with an oncologist, a gynaecologist-oncologist and a plastic surgeon who are very highly regarded by the Cancer Community.
(b) SELF RELIANCE: The most common breast reconstruction procedure, the “TRAM-flap” robs the patient of her primary stomach muscles. No one told Lisa about the “DIEP” procedure aka “DIEP-flap” - she learned about it by researching the subject for hours so that she could be well-informed when she met with the plastic surgeon who, as it turned out, specialized in the procedure. Lisa went into that meeting armed to the teeth with questions. She knew what she wanted and she knew what her fall-back decisions would be if the optimum goal wasn’t available.
(c) THE IMPORTANCE OF THE NETWORK II: Lisa’s friend Chris opened up her home to Lisa for pre-op and post-op care. I mentioned once that Chris could get to VGH blind-folded. It’s true. Having someone in your network who already knows where to park, what corridor to go down and what door to go in goes a long way to keeping the anxiety at bay. Further, that Chris was so close to VGH alleviated a financial burden that many patients are saddled with as a result of their post-op care.
(d) THE IMPORTANCE OF THE NETWORK III: Lisa and I have spoken a lot lately about the disease defining the person. There are some people who can’t say the word ‘cancer’ without a furtive glance to one side or the other. In Lisa’s network, there are no hushed conversations. Cancer and topics such as chemo, radiation, ‘the girls’ mastectomy / reconstruction are all topics that have been discussed in full voice and eye contact. I think the approach is ver-r-ry healthy and one worth modeling. It’s a lot less stressful for the patient if she knows that she can talk about what she’s going through and feel like she’s being heard. It also allows the team to talk about their feelings as well.
I’m writing all of this not just because it’s late, which it is, but because of women like Colleen who are encountering their own hair-raising battles with the system.
Colleen, I can’t imagine what it must be like to process all the conversations with Doctors and specialists only to learn that that the one surgery considered essential to beating the disease is being held up because VGH can’t free up an operating room. I hope you are surrounded by a sound network of people who can be your eyes, ears and voice during those moments when you’re feeling too overwhelmed to concentrate. If you need some letter writing support, let me know. I’m happy to lend a hand.
- Norm
I can't imagine all this, it makes me crazy just thinking about the "system".
Think about all those who just sit back and do what they are told and don't take charge.
Phyllis
Thanks for the kind thoughts.I emailed my MLA Nicholas Simons yesterday.I hope it helps.
I did alot of research when I was diagnosed,I learned if you don't take charge alot of decisions can be made around you which may not be the best options.I could write a book on the stuff DON'T get me started!!
Colleen
I have worked in and around health care off and on for nearly 26 years. When I went through nursing we were taught to be the patient's advocate. Guess what? There is precious little time for that because they are over-burdoned and under managed, or shall I say poorly manange. We can't be our trusting grandparents who viewed health care workers as demi-gods who know what is best for you. Fully trusting the health care system to manage your illness is an archaic and naive mindset. You or one of yours has to advocate for you. What ever happened to the health ombudsmen?
I fought tooth and nail to get my dad the best care he could have during his long struggle with cancer. Luckily I wasn't the least bit deterred by the lords of healthcare.
Educate yourself and never stop asking questions. Take a friend or family member with you to all appointments so that when your mind goes blank from fear or you over-look something there is another voice there to harrangue the authorities.
What the health care system forgets is that it is primarily a service system that we have pre-pay for with our tax dollars. Could you imagine running your own business as lacsidaisial as doctors offices and hospitals run theirs? I certainly wouldn't have any loyal customers if I made them wait, gave them second-rate advice, and talked down to them. The unfortunate thing is that we can't vote with our tax dollars and say, "forget that noise, I'll try the next doctor, or OR booking situation at the next hospital." Or how about, getting the governing bodies to apply the principal of triage to operating rooms. That is, if you have cancer and you need a procedure stat to prevent the spread that will cause the eventual demise of a patient, they come first. Never-mind the someone who has had a facelift or non-life threatening surgical procedure booked. Get to the back of the line and let's treat the patient without the advantage of time.
And I didn't even have caffeine before this rant!!
Good luck Colleen. Get in their faces and be the squeaky wheel.
The Bead-lady, Laura
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