Today saw two hours of travel (on this bright sunny and cyclone free day) to see my surgeon for the results of an ultrasound for the lumps in my side and armpit. It has been a long time between visits.
These “lumps” have grown since October when they were thoroughly assessed last year at my local hospital as scar tissue.
It’s hard not to be paranoid. So in light of the increasing size of these palpable lumps, and considering my oncologist is “da bomb” they were reviewed. Except this time this was done in the big smoke.
On arrival at my big smoke hospital, I waited another one and a half hours beyond my appointment time to be seen, which is the usual experience. Finally, I was called.
I entered the consult room and was greeted by a friendly registrar.
Today, my original surgeon who I have watched for much of the clinic time taking new patients into their consults happens to be too busy to see me. Sadly, the tide of newly diagnosed breast cancer patients keeps rising.
This not seeing my surgeon is supposedly a good thing. It must mean I don’t have cancer!
I am shown to a chair and the registrar begins.
“You were operated on Jan 2013 and also had a prophylactic mastectomy in August. Is that correct?”
It’s as though two years of torment can be neatly wrapped up into one teeny tiny sentence.
The registrar asks me how I am.
How am I? Does she really want to know?
I explain about the pelvis issues with Tamoxifen and my impending surgery. She asks me who is seeing me.
“Dr Claudia Karvin”.
She continues… “Well the good news is your ultrasound is unremarkable. It’s scar tissue!”
Bless me, I’m cancer free!
I strip off and my breasts are inspected. My armpits and the skin and nipples are checked since I don’t actually have breasts anymore. She runs her hands gently over the skin looking for lumps and irregularities. She palpates the lumps in my armpit.
“Oh good you’ve had reconstruction”… says the registrar.
“Yes I’ve got expanders” (I’m so lucky!)
I am supremely disappointed and I cannot hide it. The registrar can sense my displeasure for being stood up.
“I am a surgeon too!” she tries to reassure me.
“It’s not that, it’s about expectations and patient relationships. My surgeon and I… it’s been a long journey”, my voice wavered.
So I asked her … “Does it happen often that patients travel for many hours and then wait a long time and don’t get to see who they intended?”
“Yes, yes, all the time. It’s a good thing it really is!” she tries to provide further reassurance.
But I feel like I came all the way to the big smoke for lunch with an ex, and I got stood up, while they dined with someone else at the table opposite me.
I left the hospital feeling totally dejected.
I should be skipping down the street with this benign scar tissue news. But I’m not.
The total mind fuck of it all.
I contemplate that she didn’t want to see me. Or it’s not necessary to see me. She is simply too busy with other patients. My surgeon.
Deeply perplexed at what had transpired, I nearly walk in front of a moving car.
I don’t think anyone can understand what that feels like.
Letting go of one’s dependence on a medical expert who you viewed with such intensity, while they saved your life for well beyond a year is difficult. Releasing my vice like grip on my heroine.
Couldn’t she just look in for thirty seconds just to make sure I was okay?
Okay, so in the meantime, I will only be seen if I have the misfortune of presenting with a another tumour. If not, I will visit again in twelve months for review. I should have known it would end like this. It’s the way it plays out and I should be thankful.
I asked the registrar about the wait list for my exchange surgery.
The registrar said the list is now at two years from the previous estimate of eighteen months.
I’ve been looking forward to completing this journey in May. Now it could be November or beyond. By then, it will have been nearly three years with these painful, hard and ghastly things.
I sit and I watch women roll through this shittytittie journey. They have surgery, recon, chemo, rads. Whatever path it takes. It’s different for everyone. At the completion of their treatment they have reconstructive surgery if that’s the path they have taken. Some only have to wait months. Some years.
It’s hard not to get pissed about my own predicament.
Incredible friends have said go private! They would generously chip in. “Just go and have the pelvis and breasts completed so that you can get on with your life!”… they said.
But the idea of presenting the money to pay my way to a faster solution disgusts me. Healthcare (or the right to a good education) shouldn’t be about your financial position in life. It’s a philosophy I’ve always held dear.
So wait I will.
It shouldn’t be that way but it is. Do it for your sanity. Do it for the private hospital food. Do it for the benefits (many) of having one anaesthetic instead of two. Do it to choose your surgeons. Do it to put an end to this part of your shitful journey. Do it so it doesn’t clash with Iron Man Hawaii, because it will. Do it and move on. Just do it!
Do it for England! Lol
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I do think your Public Health Journey has been a very long one!!! Unfortunately we don’t have enough specialists in our country to deal with our expanding population, we don’t have enough people that want to pursue a career in a specialist field. It takes a minimum of 7 years after the 6 years of under grad medicine (or 4 years post grad Med) to become a specialist, so many chose to become a GP instead. It is a big ask. Their aren’t many other careers that require this length of training, and these specialists work around the clock. They are all doing the very best they can. Medicine does have it’s flaws just like everything, nothing is perfect.
Health care shouldn’t be about destroying your quality of life with pain and discomfort for months or years, though. The system is failing you- and that disgusts me. A system is just a system. Money is just money. They’re both inanimate. They don’t care whether you’re in pain or not.
But your quality of life- that’s everything. For you, for your family, for your contribution to the world.
But yay for scar tissue!
…and everything crossed that post surgery you only have to deal with scar tissue and Registrars forever!! I have noticed a terrible spelling mistake in my previous reply, and by the way your artwork is amazing. I am going to give painting a go in 2015 too.
Yes yay for scar tissue. My friend had the same reaction when it came to the last appointment for her sons oncologist…she felt like she had broken up with her secret boyfriend.
When I finally had the last appointment with my thyriod surgeon, I also felt weird. It makes sense, after all we show them our boobs…I mean our vulnerable side!
I totally understand your disappointment. I think your analogy about an ex who stood you up rings true in terms of the dejected feeling. I have a love-hate relationship with my oncologist and yet, I still feel stood up when I get the PA. I try to reassure myself that there are women who are far worse off who need her attention. I think you have every right to be upset (though you should be careful of walking out in front of cars), especially after driving and waiting all that time.
I agree with your perspective that you shouldn’t have to buy health care. That’s totally true. But it’s not like you are just jumping to the front of the line right off the bat. You have waited and been through so much. I agree with others that it might be good for you to just get it over with. Just create a GoFundMe account. I know there are lots of us out in cyberland who would happily contribute so you can move on. You’ve been through a lot and deserve a break.
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