Call me CRANKY PANTS... a massive rant
Having worked from home yesterday so I could have a bunch of doctor's appointments and various tests I have to go to work today and I so hope that after the frustrations of yesterday I do not snap and some poor unsuspecting colleague becomes collateral damage as I am bound to rip someone's head off today...
I know I have been a bit vocal on many blogs but this is the 1st time I am posting as I never wanted to post since I have been in a bit of a fog all this time in terms of where I am at and what is going on with me. The whole damn thing has been an experience in terror not because of the diagnoses but because of the amount of misinformarion and blunders which to a control freak like myself is kind of worse faith than just about anything else...
I will not bore anyone with too much detail so to summarise: I found a lump in my left boob in the last week of February and having had unpleasant experience prebiously asking for referrals for ultrasounds as I have had cysts there previously I booked myself in for a mamogram at breasct screen ckinic as I am 44 and now eligiblw for those... 2 days later they 'did me' and I knew even during self exam it was BC but seeing it on screen there brought it home. No mistake - it was BC. Radiologist said nothing but I knew. Went back to work as per usual and unsurprisingly the next morning had a call from svreening place asking me to come back on Monday for further scans and a biopsy.
Went to GP that evening to give him a heads up and poor fellow was floored. He offcourse proceeded to tell me not to presume it would be cancer as over 995 of lumos are not, no family history etc etc. Told him it was and I know he suddenly thought less of me for being so sure but I knew soon enough he would know too. He is a fabulous GP by the way so it did kind off dissapoint me he suddenly looked at me wirdly when I told him I was certain and I needed him to consider where to when the diagnoses came in on Monday. I just wanted to be prepared for the visit to the clinic so no time was wasted afterwarfs and so I do nothing wrong to adversely affect my treatment.
At the Breast clinic they took a crapload of mamograms - I mean seriously how many times can one's boobs be flatten like pancakes before we say "no more"... I know they have to do it but each boob 5 times ?! I can handle pain but the one with the cancer wasnhurting so much I was considering taking a swing at the poor radiographer when she said "not the best grip and we need this one again" ...
By the way I cannot fault the Breast screen clinic - they were fabulous so anyone going to the breast screen at RPA in Sydney do know they are just fantastic and made the whole thing so much easier.
Before the biopsy or ultrasounds I was told I definitely had BC but they had to do a biopsy to understand what type... I think they waited for me to freak out or somwthing but instead the Surgeon almost fell off his chair then looked at me like I had a screw loose when I responded with "Good, now we can do something about it".
This is my 1st gripe and somwtjing that has been driving me.insane since then... everyone is different so why am I expected to cry or sook or whatever and why do people think I am weird for considering this to be an illness that I talk about like any other. OK it is cancer, but it has been diagnosed, there is treatment so I plan to treat it and get on with my life.
Do not take me wrong, I get the severity of it - we all do. We all have to deal with being given this diagnoses and nobidy knows as well as we do how much of a shock it is and how scary it is. But why is it that perfect strangers even expect us to collapse in a heap every time we have to mention being diagnosed with BC... Sure, I cried about it but that is my business. Why do they expect me to cry in front of them? And why is it that if I do not they think I am either not getting the severity of it or that for that matter I am "handling it well".
Yes, if 1 more person tells me in this weirdly suprised and at the time condescending voice that I am handling it well I am going to punch them out !!!!!!!!!
I am handling it... that is all. There is no "well". We are all flilping "handling it".
There is no "well". What is "well" in this situation? Not crying when I talk to them? Not being hysterical in front of them? Asking the chemist to order me a bix of masks so they are ready when chemo starts as incosiderate pricks who have cokds and flu will continue to leave their homes sick and potentially infevt my husband and / or myself.... Continuing to take on extra load at work as I am going on leave as chemo starts and they are trying to get me to do 5 times the normal load as they are freaking out about my leaving? Yes the new idiot boss is tellkong me I am looking well and doing well even as I am in a middle of a coughing fit turning blue in the face as cannot get a breath as she does not want me to leave even earlier than planned... Returning to work 4 days post surgery... Continuing to work this past month since the surgery even tbough I have been sick as a dog with allergies and on steroids in coughing fits and with flu like symptoms the whole time...
That is NOT flipping 'well'. Why do they not get it that there is no good or bad way or "taking it". We do what we do and act how we act to survive. To make it through today. We all have days when we want to cry our eyes out... we all have days when we feel weak and fragile and want to hide in the bed under the covers and have someone else take the load... we all have days when we soldier on because we have to go to work, have to take care of the home, family etc... we all have days when we want to scream and when we want to puch someone out (well nearest warm body would do on some days - just really want to het that anger out somehow somwtimes...).
Nobody chooses this and nobody regardless of how stoic they appear is doing "well". We simply do out best to cope with what is happening to us, handle all this stuff that is being done to us or that is yet going to be done to us and try to work out a way to make our bodies comply with what is being ask of them to take.
It is not like I can turn arround to someone and say "too much for me today - just take my cancer and you deal with it from now on"
We all bloody well have to deal with so many things that the brain is overloaded, body is overloaded and we need to be seen as 'normal'. I need people to treat me as a normal person in my normal everyday life. I get that I am the flipping cancer patient in medical serting. I may be the one with the cancer when talking to the husband or some of the close friends while trying to plan how best to cope with life and household during chemo. But at other times, when I go to work or shops or chemist or when I oay the bill at the Dr's office I am ME and need to be treated as a normal person like every other person is.
Why does everyone sees it is their right or obligation to mention my cancer and tell me I am doing well and when I brush ir off they insist on repeating it...
And that brings me to my other 2 phrases that I swear I will punch out the next person who dares say it to me. Why the .... do they feel they need to say "we are all given what we deal with for a reason" and " we are only given what we can handle". WTF makes people tjink they can say that to me !?!?!?!?!??!!? Had to deal with the receptionist in Dr's office telling me one and when I tried to change the topic politely she proceeded with the other and my ignoring her did not stop her as she bloody well went on and on and on and I had to bite my lip as I just knew I would not be able to controll myself had I opened my mouth....
Are they flipping insane... How can anyone think that to be an appropriate thing to say to someone going through this process and fighting to not just stay alive but to stay sane... those 2 bloody phrases are the worst thing they could say to anyone in this situation. I HAVE BEEN GIVEN CANCER FOR A REASON? What can that damn reason be? I am a bad person? I have not dealt with enough pain and mysery so I needed to be given cancer to 'learn'? I can handle it thus I must be given it?
Honestly she started my day off in a way that the rest of it just kept on building and when subsequently I dealt with an idiot who was supposed to take my blood and proceeded to rip every blood vessel in my left hand as she could not find the vein but refysed to pull the needel out and kept on moving it arround inside my arm until I screamed with pain drove it home "I am having to deal with it 'cause I can handle it" I told the cow I did not want my right arm touched as I would be starting chemo in 10 days so needed her to try the keft again to be told "well not an option as while trying she would have bruised the area so we have to go to the right" unfortunately had to have the blood test so now I have two severely bruised arms rhat normally take 4 weeks to heal and chemo starts in 10 days... YAY - but offcourse i am handling it "well" as I did not rip her head off.
And I handled it "well" when I went to the cardiologist for echo and she had to ram the ultrasound paddle into my left side where the surgery scars are and where all the bruising is. I know she had no choice so I bit my lip until it bled and tears were running down my cheeks but I had to keep my mouth shut as it had to be done. But hey I was only given that pain 'cause I "can handle it".... Then I proceeded to open a letter breast care nurse kindly sent me as the surgeon had not sent the final biopsy results to my GP and I wanted to have all the results on the record at the GP's office and that was the icing on the cake.
When I had the initial scans and biopsy at the breast screen I was told and results backed it up my "lump" was 2.8cm. Post surgery when the results were in the surgeon told me it was smaller than initially thought as it was only 2.5cm. That actually make me.sigh with relief as there was a 5 week wait between diagnosis and surgery and I was always fretting there was a cancer growing and spreading all that time.... yesterday I read the biopsy resulst The Breast care nurse kindly printed off and sent do that GP would have everytbing and the size read: 1cm x 2cm x 3cm.
Well I DID NOT HANDLE THAT WELL. Why did that SOB who may be a good surgeon but is a miserable damn excuse for a doctor have to lie to me? Why tell me it was smaller than it was?
That same idiot initially booked me into private hospigal even though I told him because of my other illnesses I had to stay in public as rhey have better fascilities. That pushed my surgery back 2 weeks as the moment immunologist found out he had me moved to public but by the time ge got o to the surgeon got it into surgeon's head WHY private is not appropriate the surgeon was going on leave the 1st day public could take me and by the time he was back it would be 2 additional weeks of delays... that same idiot who ignored my call 4 days post surgery when I noticed an infevtion so I had to get myself to my GP who confirmed it and then demanded surgeon takes his call rhen and there so he could treat it appropriately.... That same idiot then lied to me about the size of the tumor and gave me a referral for an Oncologist without explaining that meant going into private hospital and not being under a care of a multidisciplinary team. He knew I was too risky yet he showed me without explaining into private. So that meant 2 weeks until the appointment and $400 Consultation fee (I was NOT warned about in advance) later Oncologist's locum informed me I was too complicated to be treated by them and had to be moved to the public as they had more suitable fascilities and that I had to be under care of a multidisciplinary team. Well her initial words were "WHY DID PROF XXXX REFER YOU HERE WHEN HE KNOWS YOUR CONDITIONS?!"
Those words were uttered on the 14th of March... I cannot fault her as she has now been working on getting the hold of the immunologist I see who went o'seas on the 14th.... not her fault offcourse but of the jerk who did not refer me where I should have been referred to and who did not tell me what his referral meant... now the poor Oncologist is consulting everyone in that team, sending me for all these tests and moving me to public. Looks like treatment is starting on the 16th (the 1st day my immunologist Is back as they plan to call him 1st thing when I am there to make sure they treat me pre chemo so my allergies do not kill me on the spot).
All in all - I am about to go to work and try very very hard not to murder some poor colleague today when they declare I am "handling it well".
Sorry guys for my rant. I had to vent and rant as I honestly feel like a vulcano that 2.5 months into this is about to blow.
I just honestly wish that the "by standers" to this whole mess realised there is no "good" way of handling this shit. Being stoic is no better than screaming and kicking and no better than anything else. We all have our moments when we are all brave and stoic and upset and sooks and hysterical and whatever else and those comments about our behavious or appearance or that we got it 'cause we can handle it or 'cause we sre going to learn something valuable from the 'experience' are really bloody NOT helpfull. Why can they simply not treat us as normal human beings with emotions and just deal with whatever the emotion is that day....
Comments
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That was a darn good rant. No really, heaps of what you said I have put on my poor old husband before since there's no one else to rant to at home. This forum is great and we all know the crap you are going through. You should post more often and we'll all support you. We get it.
Other people just don't know what to say. On the one hand they might envision you looking like you have terminal cancer with days to live. I know what that can look like and they have no idea there are varying degrees of cancer, some of which can show almost no outward signs at all. So they say you look good. Its just an uninformed comment so don't take that one to heart. On the other hand they might not want to delve too deeply into what you are going through for fear you may have reached the final straw that breaks the camels back and the tears of frustration start and they don't know what to say or do if that happens.
Ok, some hopefully positive things you can do to help. I started wearing masks but honestly they are dang uncomfortable so in the end I would suck an antibacterial strepsil before I entered any where there could be people to infect me. Touch wood, it has worked. I have not had any bad colds or flu to date. I could be just lucky but I think the Strepsils have helped.
I asked chemo if it was ok to take Centrum 50+ multivitamins as some they don't like you to take and they said that was ok. I don't take them all the time but if I need a bit of a pick me up I take them for a few days and I do feel a bit better. If you are trying to choof off the last of a cold and have that dry racking cough, make sure you switch to the dry cough medicines. Many people don't realise this. It can make a heck of a difference.
Can't help you with the work thing except to say you now what? No one is indispensable. The work place will not fall into a heap without you. It might run a bit wobbly by itself for a while but they will adapt in time. Any chance you can work from home just to keep in the loop of things until you are well and able to return to work without tearing some ones head off?
My hugz to you today and my prayers with them who know not what they say. Maybe no one will say a thing today? Anything's possible. XXXXX
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Do you really have to be at work? You're sick, so if you have sick leave you should take it, even if it's "only" for your emotional wellbeing. I had four weeks off work after my lumpectomy. I felt I needed that time to deal with the pain and difficulty of my wounded breast, to concentrate on healing and in order to do a lot of thinking and research on my current health issues and my future treatment. Fortunately my doctors agreed that I needed that time off. I think you really need time at home to deal with all the problems caused by your treatment team. What a horror story! You have really been let down by the health system. I hope things go better for you from now on.
Barbara
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I took long service leave between surgery and chemo and as I did have a reconstruction it took almost 6 weeks to physically recover. I've continued off work as chemo has been physically and emotionally difficult and rather than just pretend all is okay quite frankly I'd rather just retreat and take whatever time I need to recover. I was referred and stayed in the public health system and I still waited 5 weeks for surgery as I wanted reconstruction, had a bilateral and I think because it was small. Surgery though showed it a bit bigger and a higher grade than they first thought also. I started a cancer journey via facebook and have included some work friends. This gives me an opportunity to express what is happening and how I am feeling. I also showed my shaved head...my pre makeup chemo face...which is now washed out with black rings under my eyes...so they know why I "look so well" as I got fed up with the comment. I have just decided to not dwell on what people say as it just gripes me, and quite frankly I don't need any more stress.
So my suggestion is...take all the time you need. Work will survive without you there ...just think if you had a car accident tomorrow they'd have to carry on regardless. I've done the carry on thing myself and ended up off work with a major depression, and nobody thanked me for all those days working when sick, working back etc so with this new job I have I just decided I need to look after me as nobody else will.
Hope all goes well with chemo. It is hard work both physically and mentally but what choice do we have? Take care. Kath
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Hi! Sense your frustration but that is what we are here for! I think Brenda said earlier, post more often as writing it down helps to get some of it out!
Hopefully your workplace issues will sort as your health is your focus at present! People say silly things because they don't know what to say or think they are being kind but we don't grab the message in that way!
Wishing you well with your treatment.
Take care
Christine xx
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That rant hit so many chords with me, and I can sympathise with you regarding the things people say.
As people on the cancer journey, we have all at some stage been "normal" people. That is why I remember myself making many of the those same comments to people I have known over the years who have been struck by this insidious disease. I cringe when I think of myself (as much trying to cover my own embarrassment as compliment my friend) dumbly saying over and over "you look fantastic, you really look fantastic", and congratulating myself on the fact that I had made her feel better because she was smiling back at me. I now know that there was a much bigger story going on behind that patient smile.
So now as someone going through this (I had my final AC chemo today and will be starting weekly chemo in three weeks time) I remember back to when I was "normal", blissfully unaware of the real story behind the scarves and the turbans, and I try to cut them a little slack, and hope that for them they will never have to know what we know, feel what we feel, make decisions that will never seem "right", or save tears for a safe private place in order to protect loved ones.
That's on my good days anyway. On the other days I just think "shutup arsehole what would you know"
I read your rant and I felt it all. I truly hope your journey is as smooth and trouble free from now on as it is possible to be. I am sure you are in the thoughts of the many people who read these blogs, and you are in my thoughts as well.
Jane
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OMG ..... You have had a bloody awful process to go through. Anybody would feel just as frustrated, frightened and concerned given the same set of circumstances. This is a good place to have a rant, as we understand, and we all have our moments when we need a vent. I know that most of my tears have been due to frustration, there is enough going on without having to deal with speed humps as well as having to work as well. Sending you a big cuddle, Trace ????????
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Hi There,
i agree with the other ladies. I felt every one of the emotions I have felt throughout this process reading your post. The thing is people know that chemo makes you sick and you lose your hair! That's what they think cancer is. They don't realise that it is so much more than that. I remember a friend who had not been supportive of me at all saying that she thought I was doing ok so she didn't bother. My answer to that was, I was fighting for my life, battling cancer. What in the world would make you think I was ok? Who's ok when they are going through this? People don't know what to say. We also tend to lose our tolerance for bs when we have been or are going through this. Rant away. We all get it. And as far as work goes, no one is indispensable. You will be amazed that they will survive without you. I worked throughout treatment, partly out of necessity, partly out of a need to have some normality in my life and partly out of a misplaced loyalty to my then employer. I didn't want to let them down as I was in a management position and was led to believe that they would struggle without me. 14 months into my 16 months of treatment, they sacked me. This is the time to do what's right for you. Put yourself first and do what you need to. Hang in there. Karen xox
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Thank you Ladies both for your understanding and your advice as you are absolutely right and I honestly needed to hear that.
I had a.complete meltdown emotionally the other day and must admit it has taken this long for me to finally come back to reread what I wrote and everyones feedback and get my head in order.
You are all absolutely right. I should stop bottlong things in until that proverbial 'straw' as it is so stupid off me to keep it inside for so long. Not like I am a damn superwoman that will manage to get through this without revealing she is human.
And I know that work will survive. It will be a mess and it will be difficult for them and to be honest I have been sticking it out as I do genuonly care for a couple of colleagues and I know their lives will be a misery if I just leave this way with nobody to hand over what I do but I have now come to the point of realising it simply has to be that way and my allowing myself to get this run down and this ill right before chemo will destroy me and still they will be stuffed as there is not much I can do when the GM has not organised someone for me to train on time.
I get it and have turned a new leaf. Today and the few days I am there next week I am going to take it easy.
I must admit that I do not think I will ever get used to comments of strangers telling that those that get were meant to as some part of grand plan or rhag being given cancer is a good thing as it will show me just strong I am or teach me that I have to look after my self better. BUT I reckon I can keep that to a minimum as going forward I come first so stuff the idiots... I can always walk away... Who says I need to politely smile at dumb statements. Dumb me worrying about their feelings over my own - Time for me to put myself first and spend my time and energy on those that count, those that are supportive and helpfull and to simply walk away from dimwits.
Again thank you ... reading your comments really helped ????????
Jel.
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Time to just look after you. Look forward to reading more blogs from you. And rant all you need. It really is a shit journey but we are all going for the cure or at least get as much time as we can cancer free. Somedays the stupid comments bother you more than other. Almost slapped someone yesterday who told me how well I looked. My comnent...clever makeup...but I didnt want to share with her I just had AC chemo and felt dizzy, tired and might even chuck on her if she didn't piss off. That's the trouble working at the same place as having chemo...always on show. So I politely thanked her and got home. Take cate. Kath x
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Thank you Kath ??. That is my plan - not wasting energy or being negative because of dumb comments any longer. time for me to think of what is important and those who are important and conserve my energy and emotions for me to get through this
Jel.
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