Journey vs Ordeal
I am wondering if anyone else gets annoyed when others refer to breast cancer treatment as a journey. A journey may be described as moving from one place to another. However an ordeal is defined as a horrific experience, often painful and protracted. For me it's an ordeal. It will forever take up rent in my mind.
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Yes, you're not alone. Big thread about it here.
https://community.breastcancer.org/forum/102/topics/878375
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I am with you, it is definitely an ordeal!
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Another one here who agrees wholeheartedly, and I think you will find there are many, many, many of us. I do unfortunately find myself using that word "journey" once in awhile when talking to others who don't have or know much about breast cancer. I've called it my breast cancer "experience" before, but I like your "ordeal" much better, and think I will adopt that term.
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I have always thought of journeys as pleasant. The best I can say about 10 1/2 of stage IV bc? What long strange trip it’s been (thank you Grateful Dead!) .
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yeah, “journey” doesn’t cut it, definitely an ordeal and then some
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I guess technically you are moving from a Prior Life of Innocence to a New Life of Anxiety so if people want to call THAT a journey, they can knock themselves out. Sometimes I think using journey relates more to the pink brigade types who may not have as long an arduous road to endure or have really good long term prognoses and are all 'fighters'. When you are IV, its rather you are still going, you just picked up a crappy passenger in the backseat calling all the shots and taking you places you would never have otherwise gone (and for good reason!).
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Ordeal. I like that. Awful things can be journeys (the Bhutan Death March comes to mind) but I usually equate it with "trips" - like going to England, Spain. Fun!! Or maybe changing the way you deal with life -- like learning meditation or practising mindfulness. I do neither. Well - maybe mindfulness to a degree.
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Ordeal. From here, there isn’t anything pleasant to journey to. Who would want to take an unpleasant journey
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I think of it as an endurance slog. To me, ordeal is too much like using "battle" and that word makes me cringe. But it would depend on the stage and treatments and side effects and all kinds of things; it's certainly an ordeal for many people who had chemo and/or are higher stages.
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I think in the end you have to use the words that work for you but also understand that others might use the same or different word than use but not mean the same thing as you at all. Some people might like look at the word journey and think it should only apply to something of a positive natures. Others see a journey as anytime they are moving thru a different stage or situation in their life. It’s just like using the word battle or survival or fighting some people feel like it fits what they are doing and others don’t. Sometimes it’s more than one thing. It might be an ordeal and a journey for some. Everyone has the right to express themselves with words that match their experience even if it seems like others don’t feel the same way. I think it’s important we speak our own truth because you never know who else is sitting in silence wondering if anyone else feels the way
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When I was first diagnosed, I was introduced to the term "shit sandwich." That pretty much describes it IMO.
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Shit sandwich describes it perfectly. Singles, doubles, triples, whoppers. And sometimes extra sauce.
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I needed this thread so much right now, Gardengurl--thank you! I'm nearing 10 years out and the gift and journey speak is full blast outside my condo walls with the few people here (I relocated) that actually know what happened to me. I'm grateful to be here, but the pressure to be pollyanna positive because I got through this is just really hard when there's still so much that is different in my life now since diagnosis and so much that I still push through. There are a lot in my own circle who equate acknowledging pain/struggle/how hard it has been with being negative instead of being real and in the moment. I've had to work through some of my concerns about these reactions with councellors who are familiar with cancer treatments and also mindfulness and guided meditations has helped me. Ordeal definitely resonates so much more with me than journey. I also find it super hard when some family members and friends full blast credit their prayers and other spiritual rituals for my still being here and also for every diagnostic test outcome I've had since. I can't even imagine reciprocating that to another person. Quietgirl is spot on. There are words that work well for some and really don't fit for others. lw422 and alicebastable I could not agree more. Shit Sandwich 100%.
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I too want to thank gardengurl as well as bcat34! This is my third time being diagnosed with breast cancer. I had a feeling I had cancer again at the end of July when my mammogram was BIRADs 4 and the radiologist told me I needed a biopsy.
Quick rundown of my cancer: 2003, pre-menopausal, IDC, treated with two lumpectomies (second one for clean margins), chemo and radiation. I call it being mutilated, poisoned and burned, which sound like a horrible way to describe it, but in reality, it was just that. When I say burned, I mean burned, not just red skin and painful! I had jellybean size blisters on top and the underside of my breast skin actually sloughed off! This is abnormal, doesn't usually happen like this, but it happened to me. I also had 24 lymph nodes removed, all negative, which caused immediate lymphedema in my left arm. It is twice the size of my right arm. That is a long story I won't go into here.
In November of 2018 I had pain in my breast. My gynecologist ordered a diagnostic mammogram and US. I had a biopsy which revealed ILC in the same breast. In January of 2019, I had a single mastectomy because I was refused a bilateral mastectomy on the grounds that this highly respected cancer hospital policy was not to remove a healthy breast. Apparently having a mother and sister who had breast cancer (another sister was diagnosed about two months after my surgery) and the fact that this was my second rodeo with the beast, wasn't good enough! I had DIEP reconstruction. I was on Letrozole for six months but didn't like the side effects, so I stopped it. I am pretty much anti AI/Tamoxifen for me. (I am not against others taking it, I am only talking about me for reasons I won't get into.) I did go through genetic testing with a counselor, and I do not have any defective genes of the 54 they tested.
Fast forward to this past summer and here I am again! At first, I felt mentally okay, I wasn't in shock as I was with my first two diagnoses, and surgery in October seemed light years away.
I did write to someone at the cancer hospital where I was treated the last time to let them know that because I was denied a bilateral mastectomy, I am now facing another mastectomy. I let them know in a very professional way, how many people are being affected now, including the special education students I work with who will be without support while I am out on disability. They sent me a response and said they were looking into it and will get back to me in writing within 30 days. They sent it certified mail, which indicated to me that they are doing something and might be concerned about a lawsuit? I just don't want another woman to go through what I am now, because of their antiquated philosophy. I want them to at least have a conversation with their patients and not just say no! * Ironically, what sparked my letter to them was receiving an invitation to a survivor event on the very day of my upcoming mastectomy!
My co-workers keep marveling at my positivity, and I give them the "politically correct response of, it is what it is, I survived this before, I will do that again."
It is true, but I leave out all the turmoil and mental anguish I feel. I am not bothered by the terms journey, or ordeal. I don't care how anyone labels it, it sucks!
I am going to call my nurse navigator and ask for a referral to meet with a social worker or therapist for mental support, because I am not in a good head space going into this surgery. I am very thankful I transferred my records to my local hospital and met with their breast surgeon, prior to this recent diagnosis. In many ways, my local hospital is way more progressive than the cancer hospital was. My plastic surgeon specializes in lymphedema! No one at the cancer hospital specialized in that! I chose my doctors this time, unlike the last two times when I was assigned doctors, so at least I have established a trust in my doctors.
Still, I feel as if I am a mental mess. I saw my PS this past week for my pre-surgical eval and was surprised that my mastectomy with tissue expander is an outpatient surgery. I immediately felt as if that this means they don't think it is a big deal, not important enough for a hospital stay. Crazy right? I can't shake that feeling. I already decided if anyone calls between being released and seeing my PS for my follow up visit, I am not answering the phone. I feel as if they are really interested in how I am doing, they should keep me over night! After a lot of thought, I realized I would rather be home than there anyway, but I still won't answer the phone if they call. They can leave a message. I also won't call them unless I think I am going to die. Then I still wouldn't call them, I would go to the ER. I can't shake the feeling that I must be tough and any pain I get I need to suffer through. Why??? I don't know where these thoughts are even coming from.
I think because this is my third time, I think everyone thinks I am a pro at this and don't need the support that first timers get. I don't want to go through all this again! If I say that to anyone (family members) they just tell me to be thankful that I have great doctors, etc etc. Why do people think "being thankful" for something in the counterbalance for fear and anxiety? Sometimes I think they don't know what to say or feel either.
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