There are very, very few people on the Black List. My nearest and dearest are all amazing and roll with the emotional waves that come their way. I’m at heart a people pleaser, I doubt anyone will ever know if they are on the list. It’s just a list in my head that helps me to handle all the weirdness that people throw at me, when they try to handle me. To handle this.
Sunday, 27 April 2014
Back to the Story - In which I create the Black List
There are very, very few people on the Black List. My nearest and dearest are all amazing and roll with the emotional waves that come their way. I’m at heart a people pleaser, I doubt anyone will ever know if they are on the list. It’s just a list in my head that helps me to handle all the weirdness that people throw at me, when they try to handle me. To handle this.
Wednesday, 23 April 2014
I hate Pink.
* point, most definitely, to cancer.
Monday, 21 April 2014
I am Angry - this one carries a strong health warning
Once again I apologise in advance I am pretty much guaranteed to cause offence.
Someone once gave me a magnet with the catchy phrase “Remember you will never be given more than you can bear” or words to that affect. I used to throw it across the room at quite regular intervals. I’d have cut it up and fed it merrily to the sharks this week - had I not thrown it away years ago.
I don’t know what has happened.
I don’t know if writing shook loose some emotions I wasn’t expecting.
Or if the meeting with My Oncologist (MO) reminded me that my lumpectomy was but the first step on a rather arduous climb.
Or if it’s just that the healing process has reached a particularly sore and itchy point in proceedings.
Or undergoing treatment for cancer is just not all it’s cracked up to be.
I think it may be all of the above, it is a hundred different things or nothing at all.
Maybe everyone just has to go through this phase and try not to lose all their dignity and humour (I've failed spectacularly at the grace I have hoped to maintain).
I was Angry this week, I am angry.
Angry isn’t descriptive enough, angry doesn’t even come close. It is more like a cocktail of grieving, sulking, impatience, and confusion with a healthy pinch of moroseness stuck in for good measure.
I have not been good-hearted, I have been no fun at all, I would have nothing to do with the me this week, to those of you who’ve tried, the tiny sliver of human that is still in me, thanks you, for you are kind and wonderful people.
This Molotov of emotions has simmered away at a fevered pitch and even now threatens to boil up at a moments notice;
When people seem too concerned, when they don’t seem concerned enough. The people who you thought might be in touch and haven't been.
The worst seems to be when I know someone knows but they are simply ignoring the entire situation.
These people always seem to be the same ones who now, intently stare at my chest while they are talking to me. I know this is an age old problem for women but I have always been gloriously flat chested (more so now I can wear nothing but sports tops) and have never had to deal with this before.
I want to say “Even if you had X-ray vision, which you don’t - you can’t see the lump because it is gone. If you’d like to see the scars, the swelling, the stitches, the bruises and the hole left behind, Ask. It’s really not all that thrilling either but anything would be better than you not meeting my eyes.”
When people ask me how I feel and then put their own words in my mouth, or try to explain to me how I feel. When people try to use magnet quotes in a bid to comfort me, when I am not asking for comfort.
I want to say “I shall be whatever emotion bubbles up in me today. I will handle this however I choose. This may be different from minute to minute because at the moment I am just that contrary. Don’t ask me to choose between positivity and negativity. Unless you’ve been here and done this, at my age, I’d shut up if I were you. Just let me feel.”
When people have said they are praying for me -
I want to say “That’s great for you but please, please take a look at my last five years, when you are done with that, take a look at the world - then bake me a cake instead or learn to cure cancer. I don’t know what I believe, I honestly don't. I know I don’t believe in the integrity of organised religion. I want to point out that, if I were to believe in God or a higher power, I sure as hell wouldn’t be speaking to them at the moment.”
When people have told me to be strong or hang tough, I have wanted to say “Shit, let me write that down, I thought weak wasn’t working out for me so well.”
When people write on Facebook that life is hard because they’ve mislaid something or they have to work and the sun is out, or complained how unfair the world is for some pitiful and trivial reason. Oh, the things I have felt like writing.
When older men, and it does seem to be older men at the moment, have the right to prescribe what happens next to my younger and female body.
I want to say “you have no idea what your decisions feel like to me, the choices you are giving me are not choices at all. How dare you sit and decided this for my body and then move on to lunch.”
I have silently railed against individuals. I have silently railed against groups. All ages, races, friends and foes have felt my inaudible wrath this week.
I think the kindest thing I can say about myself, is at least I have been an equal opportunity Anger Ball and at least I have bitten my tongue.
I was on the brink of writing a post called “ All my previous Posts have been Bullshit - it isn’t fair and I am not grateful for anything”
These are cruel, snide and hurtful things to think.
They have been Black and White things to think.
In short I've been an ungrateful cow, which then makes me more angry.
Still, these emotions have felt very true but they have not felt just. Emotions against my will.
The anger comes because I am lucky and loved and privileged and yet still I am angry.
Around and around it goes.
I don’t have anything tangible to be angry at. There isn’t a useful syphon for these emotions. I am a wounded animal. A baby. A mute. I cannot find the words for what I need, they do not yet exist.
It is made all the worse because of the sea of people trying to help, being so wonderfully kind but I am still lonely because really I am alone in all this and that makes me scared.
And so I am still angry.
Someone once gave me a magnet with the catchy phrase “Remember you will never be given more than you can bear” or words to that affect. I used to throw it across the room at quite regular intervals. I’d have cut it up and fed it merrily to the sharks this week - had I not thrown it away years ago.
I have not been good-hearted, I have been no fun at all, I would have nothing to do with the me this week, to those of you who’ve tried, the tiny sliver of human that is still in me, thanks you, for you are kind and wonderful people.
These people always seem to be the same ones who now, intently stare at my chest while they are talking to me. I know this is an age old problem for women but I have always been gloriously flat chested (more so now I can wear nothing but sports tops) and have never had to deal with this before.
In short I've been an ungrateful cow, which then makes me more angry.
The anger comes because I am lucky and loved and privileged and yet still I am angry.
And so I am still angry.
Wednesday, 16 April 2014
All my troubles seemed so far away
Tuesday 4th March
Today at 12.30 I found out I had cancer. Oh how I wish it could be yesterday again. As my friend TCP says “Well that's a bit shit.”
Practical things leap into my head. It's the state of fight mode I went into after mum died. That's how it feels.
I keep thinking how much I'd prefer it not to be this way.
Life can change on the roll of a dice, the flip of a coin - we all know this, all think we know this.
Then it actually goes and does.
You find yourself thinking “If it could only be an hour ago, two hours, a day ago, a week, a month, back when my biggest concerns were the regular, every day, garden variety worries of before. If only I’d missed the call, not responded to the text - I’d have had an another few hours of blissful ignorance. If I could just unlearn this piece of shit news. I would take more notice of what life felt like prior. Maybe I wouldn’t take timeout to smell the roses, maybe it would just be a work day morning like all those that came before, but I could try and capture how it felt, the not knowing”
You will think this on the drive to the hospital, where your brain is desperately trying to convince you that you misheard, or misremembered the news.
You will think this as you look out of the window, while MBS is explaining that sorry but you did hear correctly. Burt is not benign (MBS will not call him Burt), that he is a 17mm malignant tumour, Grade 3 of 3*. That tests will need to begin now.
You will mostly certainly be thinking it when you meet Breast Care Nurse 1 (BCN1) and subsequently create the black list**. You will think this as she fumbles her way through an explanation of treatments and fertility.
As you drive home.
As you begin to tell people.
There will be relief, numb relief, as Liam Neeson smashes his way through a middle of the road movie.
You will go to work the next day, where everything is different but nothing has changed.
You will wake up each morning, the sky won’t have fallen down and you will get out of bed, put one foot in front of the other. You will still worry about the little worries of life, be happy, be angry because this is now your new normal and slowly you will forget how it felt before.
The human brain is phenomenally good at rewiring, at surviving - at fight mode.
But then, when you least expect it, you will crash.
Please bare with me reader because just at the moment, just for a little bit, I have spectacularly lost my sense of humour. I think ! walked out of the room marked ‘Shock’ and in to the Red Painted Room of Anger and Pain. You had better believe I slammed that door shut too.
* Burt is quite small and he got down graded to 2 (champagne all round)
** Explanation to follow.
** Explanation to follow.
Monday, 14 April 2014
Elephant 3
I feel really strongly about this Elephant (it also has a Baby Elephant along it), incase anyone has stumbled on to this blog and is worried about coping with cancer or anything actually. Can I state for the Little Blog Record:
Please be reassured that I am doing well. In the grand scheme, of all things cancer, I am super lucky - another reason why I can write Little Blog.
Current Red Nail Polish: Butter London's Chancer (like crushed Ruby Slippers)
Saturday, 12 April 2014
Testing, Testing…
+++ Please, if you are thinking - “Sheesh, this post is long”, just read the Mammogram section and the very end of the post - I am conducting an experiment++++
“You have pathological need for everyone to like us”
“Perhaps if I show them how good I can be at taking this test, they will think I am cool and want to be my friend.”
“Good Grief”
“They will talk, in the locker room, about this amazingly brave and cool girl who took a test so well”
“Really? You’re still talking?”
“Then one of the Hot Doctors from Grey’s Anatomy will…”
“Those are Actors you freak”
“….Will show up at my door”
“and A. will kick them out”
“Hey this is my fantasy…Wait? Have they finished it already?”
Elephant 2
So, to another Elephant. (My posts are getting longer, How do we feel about this?)
A lot and I mean a lot of the messages I’ve received start with the phrase “I don’t know what to say”, people will go on to apologise or worry that I might not want them to be in touch. They then go on to write something so kind and eloquent it blows my socks off*. There seems to have been a lot of deleting and re-writing of messages too and this all got me thinking.
Why is society so bad at teaching us what is the ‘right thing to say’. Is there not an Etiquette guide? There probably is, but is it any good?
I’ve just checked my copy of Debrett’s Etiquette for girls** (though it says ‘girls’ , there’s a woman’s figure on the front, I think the publishers are being a bit coy here) and I can’t see a chapter or even a section on the topic (I’m going to do more research on that, you can be sure).
I’ll try and be as honest with how I feel*** on the subject, based on this brush with cancer and losing my mum (which also seems to fluster people), I truly don’t mean to offend.
Firstly, I don’t think it’s entirely accurate to say there is ‘no right thing to say” because there sure is a wrong thing; if you tell someone they deserve to be ill, for instances - deffo not cool. (To be clear this has not happened to me). It is also not cool, Mr Doctor Man, to say, on hearing of my mum’s death “well the mind was strong but the body was weak” - implication of weakness in a dead loved one = bad. Also not brilliant, Mr Gentleman, was when you came up after my mum’s funeral (where I had just spoken) and said “I was at a funeral last week, where the daughter gave a truly inspirational speech.” So the over all tone of what you say should basically not imply blame (or dent my ego because I’ll remember it for years….)
Here’s one for the sick or bereaved - you do not have to tell someone, if you don’t want to; if you only have a few minutes, or you do not know the person very well, or you are either feeling very good that day or you are not very chipper at all. It may be all consuming to you, but move on with a smile and a cheery wave (is it slightly sick and wrong of me to think, as I do this, “well, you’ve just dodged an awkward bullet my friend”, and then want to kick them?) It’s not lying and it’s ok, it’s sometime better even, because -
And this seems very unfair sometimes but YOU, as sick or bereaved person extraordinaire, are going to have to take the lead when telling someone. You are basically punching them hard in the head and then, as they fall backwards, you will need to run round to catch them as well. You then need to remember, that people get a bit ‘spinny’ after head wounds. This is a metaphor, please don’t literally do this. It all takes precious, very precious, energy. If you don't have it or simply don’t want use it (which is totally fine) revert to a smile and a cheery wave.
For the friends - Do not worry too much about saying the wrong thing, likelihood is unless it’s specatularly crass (see above) we are going to move on pretty quick - got other fish to fry, if you know what I mean. The sentiment will remain long after your words.
Ok, this one is controversial and very personal; I, myself, am not a huge fan of “I’m Sorry”, mainly because my automatic reply is generally “it’s not your fault” which then makes me feel like a tool (unless it is your fault - in which case, please take the pin out of the voodoo doll, I’ve learned my lesson). Really annoyingly, as I know myself, it’s the first thing you want to say, it’s reflex. I have said it in the last week infact, and I was sorry. It takes a minute to think of something to say without using the word Sorry….Which goes to prove what a contrary minx I am AND how difficult this mine field is. Perhaps we can declare ‘I’m sorry’ a neutral zone and I shall get over my self….
I do much prefer a “It’s shit” or ‘It’s rubbish” **** and a quick hug (hug is optional, depending on how tactile either side is, although if you are the reticent hug giver - man up and hug them for crying out loud)
Now, this ones important, friends of; even if it’s a huge shock, even if it’s a close friend - try not to cry, at least until you get the lay of the land. You are dealing with someone, who is probably spending a great deal of time and energy, trying not to cry, a lot of the time (in the early days mostly). Perhaps they need a good weep or perhaps they’ve done their makeup and really don’t, the truth is tears beget tears, so let them take the lead. And definitely don’t do sad eyes!
To both sides, while laying it out in an email or text is reprehensible when dumping some one. It is, I think, a good way to go in these situations. Tears can be shed in private, correct language used, long boring explanations of type and treatments put succinctly (and copied and pasted again and again - good tip there), minimal energy used, it’s win win. Or a good back up if you think you messed up the first time.
For the record, if you want to get the message across, in whatever way you want, then do, life is short. It really does feel good to know you’re being thought about and it sure breaks up the day.
You know what else is really nice? Letters, letters and cards that have news in them that have nothing to do with you, the sick or bereaved. I think it’s lovely to know what else is going on in the world. (Fist bumps to Miss S and Miss B. xxx)
Very last, final thing, and I find my self typing it again and again - it’s what my mother always used to say, so it must be important, be kind to each other. In fact, it is so important I’m adding to to the Little Blog Mantras - Just Be Kind.
* How lucky am I to be surrounded by such wonders of the human world?
** I do really own this book, I often need to look up the correct way to address an envelope to a Lord or which gun to use on safari….
*** Let’s please remember the 1 2 3 4 Mantras of Little Blog 1) I hope it doesn’t happen to you. 2) these are my own personal views 3) check your bits and bobs 4) everything is better with cake.
****I prefer ‘it’s shit’, the slightly aggressive edge buoys me on and this situation is, in fact, really shit.
Friday, 11 April 2014
The Voices In My Head - MRI Scan Edition.
This is why one of the Golden Rules is about being too cocky…. It’s written for Miss Z, who has been a great friend - she is smart and beautiful (she did not pay me to say this).
“Ha, as nice as she was, that nurse doesn’t know what she’s talking about. There’s no way I’m going to need this panic button, those people who’ve used it - did she say 2 in the last week alone? - they must be made of marshmallows compared to me”
“OOO, marshmallows, I love s’mores, OOO we should totally do that in the summer.”
“Yes inner-voice that is a very good plan - wait are we moving?”
“Holey-moley, we are really close to the top of this tube thing, it’s a good thing that we, unlike some, are not claustrophobic.”
“Don’t be too smug now, it isn’t nice.”
“You’re right inner-voice, so wise.”
“Thank you…. Have I told you I think we are rocking Cancer Chic at the moment?”
“Why no, but thank you, I think the Sweaty Betty yoga bottoms are a good way to go, practical and comfy…. It’s a bit cool in here though, imagine, the nurse said we probably wouldn’t need the blanket! Glad we insisted.”
“WHAT ? I CAN”T HEAR YOU, RADIO 2 AT THIS VOLUME REALLY ISN’T PLEASANT, WHY COULDN”T WE HAVE RADIO 4?”
“WHAT ARE YOU SAYING? I CAN’T REALLY HEAR YOU, IF THEY PLAYED RADIO 4 AT THIS VOLUME I’M PRETTY SURE WE COULD STILL HEAR IT, EVEN WITH THESE WEIRD BLEEPS AND GROANS”
(dear reader, please for both ours sakes, imagine that the rest of this monologue / stream of consciousness is all in CAPS because damn, if MRI’s aren’t loud)
“We’ve had one of these before haven’t we? On our deaf ear? I don’t remember it being like this. We fell asleep didn’t we?”
“Now that I’m really thinking about it, I think we were lying on our good ear, thus cushioning us from all this hideous sound”
“And that’s just the music”
“Ha, you’ve still got it, calm under fire, like always”
“Shhhh, I think the nurse is speaking”
“Did she just say that that was just one of the tests?”
Yes, it appears that is what she said”
“But it’s been ages and ages”
“You realise, it’s probably been about 5 minutes?”
“Shut up”
…………..
“OK, don’t shut up, talk to me. I don’t like this noise and the needle in my arm is making me a bit twitchy”
“Yes it is weird that they are going to inject things into us remotely”
“Weird? it’s down right creepy, Like H.A.L”
“You know, you shouldn’t really reference things you haven’t seen, it’s ok when it’s just you and me, but you may get caught out around others”
“Is this not like H.A.L then?”
“How would I know? We haven’t seen it?”
“Good point…............................I think it’s like H.A.L”
“Shall we go back to not speaking? Lets just try and listen to the radio over this din”
……..
“O.K, can we speak, the nurse just said we were getting an injection now and I’m a little scared”
“Let’s think about happy things, remember when we first met A.”
“Of course, he was building a quick-change area the size of a small apartment”
“I think he had on a the striped T-shirt he now wears on the allotment or the weird one about hair”
“It’s a good guess, it was probably one of those, he normally was. Can you remember your first kiss?”
“With A? I can, but as it was rather Gin sodden I’d rather not at the moment. This metallic taste in my mouth is rather unpleasant, like hangover mouth”
“It’s just from the injection, We stood in a bucket of paint didn't we?”
“Yes, but move it along please”
“Shall we think about the lovely view over the ocean at Friday Harbour, walks with Dad, the beach with a cup of tea? That was a really nice time, we are lucky”
“I do not feel very flipping lucky at the moment, I am in a tiny tube, topless, with my tits in a cage, I’m 34 and I have cancer!”
“Woah there missy, calm down, breath”
“I am too hot, the radio is too loud, the noise over the radio is off the scale loud”
“Those are all facts, but it won’t last forever, lets count to ten. One, two, three, four…”
“I don’t want to count to ten, leave me to my misery”
“No, as Meatloaf says, ‘I won’t do that’ ”
“ Have I told you lately…”
“Rod Stewart”
“…That you, are possibly the un-coolest, jackass in the world?”
“You know what? I’ve been trying to be kind to you but there is just no dealing with you when you are being like this”
“Hang on a minute, this is what they want. They want us to turn on each other, this is some torture device…”
“No, I’m pretty sure it’s an MRI”
“It could be used for torture, not that I approve of that kind of thing, but I bet this would be more effective than water boarding, I’d give up Dad, I’d give up A, hell I’d tell them anything they wanted to know.”
“Could you be more dramatic”
“Friends isn’t cool anymore”
“You’ve just quoted Meatloaf and Rod Stewart, and you haven’t seen 2001, A Space Odyssey - at your age - cool is a distant dream, my friend”
“Well, if you can’t handle this, your secret dream to be an FBI or CIA agent is laughable”
“Come to think of it, do you wonder why it’s an FBI or CIA agent? What’s wrong with MI5, like Bond?”
“That’s it I’ve had enough, I want out. I want out. I’m pressing the button”
“NOOOOOO! Remember what the nurse said, if we press the button we will only have to redo it. Just stay calm, it can’t be much longer”
“I’m sorry, I can’t, I’m so hot, I hate the metal tube, lying on my front and my own thoughts. I’m pressing the button”
“SHHHH wait, we’re moving, we’re going out”
“Oh thank fuck for that, that was the longest 45 minutes of my life”
Three Elephants in the Room, Part 1
- more on this in a later post, though, as I promised A., not with photos. Those can be purchased via the webshop…. I jest, I jest because that my friends would be a very different kind of internet site.
Thursday, 10 April 2014
Truth Speaking aka Golden Rules Vol. 1
- Try, if you can, to prep for your future by going on a roller-coaster, blindfold. This is what results days, tests day or in fact everyday will feel like, the highs and lows are “Cray Cray”.
- You will come away from every appointment with a saplings worth of paperwork, proving that cancer is not just bad for you, it is bad for the environment.
- You will not be able to comprehend how far reaching a cancer diagnoses will affect your life, present and future -
- - this is a very good thing.
- Lymphedema may prove to be a bigger nemesis than cancer. Grrr.
- You will worry about money, especially if you are a freelancer. You will then realise that there are people a lot worse off, that you have options and that you are, once again, luckier than most.
- Conversely, money worries will probably not stop you spending extravagantly on crazy things because a) it makes you happy, even just for a minute b) why the hell not? Try really hard not to go too wild because…
- ….You will still have to do everyday, normal things like paying bills - the bank does not know you have just been put on a mental rocket to Mars.
- Final note on shopping, try not to internet shop while high on morphine. I, apparently, have a Turkish bath towel winging it's way to me - from what I remember, it really seemed like the most important purchase of my life at the time. (If I'm being kind to myself I could see it has a defiant shout - that I'll be swimming again soon). A. once bought a vegetable peeler when coming down from sedation, we already had 2. So I guess we've got off pretty lightly, as long as we don’t mention the shoes….
- It will take more than breast cancer to convince Dad and A that you should be allowed a French Bulldog - not even when you bat your eyelashes.
- Your Doctors (and all NHS staff actually) are titans but they may not know everything at the very moment that you may wish know it. Like your parents before them, they may seem God-like but like you, they are human. They are the best kind of human because they spend their days breaking the worst kind of news. Always keep this in your mind.
- The above, is why you will spend you days at BCC trying to get the gruff, scots receptionist to like you.... heres still hoping.
- The hospital will suggest you bring someone with you to your appointments, to help remember what is said. However, you wouldn't take someone who didn't love you, but because they love you, they may forget too. Don’t worry, between you both, you can cobble it together. BRING A NOTEBOOK.
- You will realise just how vain you really are.
- You will feel guilty, about a shed load of odd things. This will at times annoy and exasperate your loved ones.
- When used judiciously the phrase “who wants to talk about cancer” can bring levity to a situation.
- Following on from the last point, only use your C-card for good, preferably funny reasons.
- You will promise yourself you will not use your C-card to gain the advantage - with great illness comes great responsibility.
- At some point, in a fit of pique, you will break this rule. Don’t be to hard on yourself when it happens.
- You will find a lot of humour in life with cancer, just don't push yourself - it's surprising how quickly darkly funny can turn simply dark. Advise others of this too.
- Medical Professionals are not allowed to find your illness funny. Case in point; when asked about your alcohol consumption (which you will be several times a visit) your answer probably shouldn’t be a) right now? yes, Gin please or b) I am now an alcoholic (delivered dead pan)***. But they must have a a sense of humour or else they wouldn’t make you wait for the Breast Nurse in front of rows upon rows of boxes of fake boobs….
- You will start a bucket list (or if that's too bleak a Life ‘to do list’) when you read it back you will discover a) you will need to be a millionaire b) you are generally a lot shallower than you’d hope and c) you are obsessed with food.
- The first 3 questions you will want to ask, upon finding out, will probably surprise you and possibly the BCC nurse you are speaking to. Asking if you can swim while having Chemo as your opening gambit for instance….
- You will become a walking cliche, this will piss you off.
- Your body will no longer belong solely to you.
- Do not be cocky about any test or hospital visit - karma will bite you on the ass.
- People will spend a lot of time telling you - you are young. Sometimes this is a good thing, sometimes a bad but because you are so vain it will always feel nice.
- This goes for anything to do with your BMI too.
- No one will know how to react when you tell them something like this, you wouldn't have known a week ago, this will sometimes annoy you.
- You don't suddenly become any better at handling other peoples bad news. You will forget the phrases that annoyed you and use them on said people. At some later point, this will really peeve you too.
- Always thank your medical team, your loved ones, friends, blog readers and supporters.
** Let’s please remember the 1 2 3 4 mantras of little blog 1) I hope it doesn’t happen to you. 2) these are my own personal views 3) check your bits and bobs 4) everything is better with cake.
*** Not least because they've probably heard it before. Several times.
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