The Britney Effect

Remember this?

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Britney Spears Shaving Head during Breakdown

 

Well, didn’t I laugh and judge and gossip about it. Although, I did admit, and still do, that she rocks the shaved head but I am honest in saying I was one of the many who judged this poor girl. I had no idea that something can happen in your life, in your brain, to create such a self destructive act, a cry for help.

Until now.

Everyone, including myself, thought that my life was just plodding along fine and dandy. What could be wrong now that I was now a ‘cancer survivor’, I wasn’t having any further cancer treatment. I had hair again, hair I could even style. Surgery was on the cards for a new boob, weight was being lost….. wedding plans were happening.

Now……… well,  here I am after MY Britney Breakdown.

 

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Photograph courtesy of Dora Stergiou – November  2016

It turns out that PTSD (Post Traumatic Stress Disorder) is a real thing following cancer treatment. PTSD symptoms are different for each person and apparently, they usually develop within three months of a traumatic event but can also occur several months, even years later. For me, it was six months following the end of the cancer treatment. One would expect, after that amount of time, me to be happy ‘its over’ and on the road to ‘getting back to normal’ now that I don’t have to have any further cancer treatment. These expectations are not the case. Here is how it all unfolded…..

MEDICATIONS

  • Aropax (Anti-Depressant and Anti-Anxiety Medication) 60mg
  • Tamoxifen (a synthetic drug used to treat breast cancer)  20mg
  • Avymys (works to decrease inflammation caused by allergy) 55 micrograms
  • Fish Oil (Helps to maintain strong bones)  1000mg
  • Duromine (Appetite Suppressant) 30 mg
  • Panadene Forte (Pain Killers)
    • Paracetamol 500 mg
    • Codeine phosphate 30 mg
  • Telfast (relieve the symptoms of hayfever) 180mg
  • Vitamin D Liquid (Strengthen Bones) 1000IU
  • Caltrate Calcium (Strengthen Bones)

 

Expectations (Beyond the normal day to day ones)

  • Lose a lot of weight in preparation for surgery – Breast Surgeon
  • Increase heart rate for a mininum of 30 days to prevent cancer returning – Oncologist
  • Stop smoking to prevent cancer coming back or developing a new one – Everyone (I did this one!)
  • Reduce or stop drinking alcohol to prevent cancer coming back – A lot of people
  • Reduce or stop sugar to prevent cancer coming back and to assist in losing weight – Some People
  • Continue to be strong – Me
  • Move on from cancer – Many people and myself
  • Stop talking about cancer – A few people
  • Have life return to pre cancer normal – A lot of people/myself

 

Upcoming Events Needing Thought and Action

  • Christmas gift buying
  • Surgery
  • Wedding

 

It seems I wasn’t coping with post cancer as well as I thought I was. I saw myself as a cancer patient, not a cancer survivor. I think I still do as a matter of fact but anyway, I was on a path of self destruction. Drinking too much, taking all of the above medication, I took up smoking (as previously discussed) and I wonder, did I do all of this to block out the self chatter in my head or to gain the attention some people feel I was seeking? I don’t know that answer but hopefully in time, I will find out.

The Day of my Britney Effect

I had a cold. No big deal right but it seems that it actually was a big deal. On top of all of the medications listed above, I was now about to add in 10 mls of cough medicine which would turn out to be the straw that broke the camels back (I am the camel).

My memory is vivid when I recall taking the small amount of medicine and within about 10 minutes or so, I became obsessed, almost manic in my thoughts. All I could think about was getting home from work, enjoying some sparkling wine (I had booked the following day off from work for some R&R) and not having to go to bed early. I knew I was meeting up with a lovely friend Nicole who was going to give my lovely locks a trim and then catching up with my 30+ year friend Tracey for a long overdue lunch.

I was only successful in one of my thoughts becoming an action and that was buying a bottle of my favourite Jacobs Creek Trilogy sparkling wine on the way home from work. I must say, that bottle disappeared real bloody quick and before I knew it, I was off to the bottleshop for another bottle.

This is where things get a little hazy. I vaguely remember saying goodnight to Sam when he went to bed. I vaguely remember playing some of my favourite games on facebook but then my memory is blank.

Before I know it, I am waking the next day and my hair is gone. I feel sick to my stomach and wonder what on earth happened. Where is my hair!? Somewhere deep in my brain I know it was myself that had cut it but why? How much did I cut.

Yep, all of it. Looking in the mirror when I got up was like a punch to the stomach. I could barely breathe, my hair had been cut in a drunken, manic manner. Some cuts were to the scalp and cuts were not so short and left tufts sticking out.

Me at the Lobethal Hair Studio 28/10/2016 - Thank you Lisa Grapentin for 'fixing it up' best you could. Sorry for the constant stream of tears....
Me at the Lobethal Hair Studio 28/10/2016 – Thank you Lisa Grapentin for ‘fixing it up’ best you could. Sorry for the constant stream of tears…. thank you for your amazing words of wisdom

 

Enter tears.

These tears continued for two days! TWO DAYS! I couldn’t focus, I couldn’t eat, decisions were impossible…..I couldn’t cope. And it really wasn’t even about the hair to be honest. I was so lost, confused.

I hit rock bottom.

I was suddenly aware that life wasn’t what I thought it would be after cancer. In fact, it was so much harder coping with life after cancer than it was during cancer. Do you think that is weird?

During cancer my life was taken care of by everyone but me.

  • GP – Tells me I have cancer and proceeds to book me in to see a surgeon immediately
  • Surgeon – Tells me he is the captain of the ship and it is his job to save my life. Then provides me with an Oncologist for the next step
  • Sam – Takes on all responsibilities of getting me too and from all appointments, provides my medications, fluids, foods, hugs and kisses. Cleans house, ensures I shower, sleep, wake, rest, laugh, changes linen on regular basis….
  • Mum – delivers flowers to my house weekly upon her visits
  • Nurses – Provide all of the compassion, caring and patience needed during hospital stays, chemotherapy treatments, radiation treatments, scans, blood tests,
  • Oncologist – Prepares a schedule of chemotherapy treatments, blood tests, herceptin treatments and provides me with a Radiologist
  • Radiologist – Schedules all of my radiation treatments, sees me on a weekly basis to check my radiation wounds, provide input on creams and treatments for healing
  • Radiographers – Tell me where and how to lay on the bed in preparation for treatment, count down via speakers for holding my breath when the radiation occurs, help me off the bed and have lovely chats with me about my dogs and life
  • Friends and Family – These amazing people do all of the visiting me, calling and texting and emailing me to check up to see I am doing ok, to fill me in on their lives, to make me smile and fill my house with flowers and cards and gifts
  • Private Health Insurance – Pays many of the bills received from having this disease
  • Income Insurance – Pays me 75% of my wage each month
  • The Bank – reduces the mortgage payments to assist in our treatment costs

 

After cancer – Where is everyone?

  • I was hugged and waved goodbye by the beautiful and amazing nurses at oncology on my last day of Herceptin
  • Hair grows back and I no longer look ill therefore, am expected to get on with life as normal
  • Normal doesn’t come along as easy as I thought
  • Banks and other billing companies are no longer so accommodating if bills are late due to ongoing financial burdens because, cancer treatment has finished
  • There are no more cards and flowers
  • No more nurses to make you smile and compare stories of the weekends with
  • There is nothing very interesting to talk about anymore
  • Fatigue and vagueness are still in my life
  • Surgeon is no longer so cuddly and caring but is now demanding and stern
  • I’m not skinny from cancer treatment like those in movies and TV shows
  • I am not needed by the cancer community anymore
  • People aren’t contacting me about their friends or family who have been diagnosed with this illness for me to help them, to talk to them, provide advice and friendship…..

Step 1 – Phone the Cancer Council day Friday 28/10/2016, 1 day after beginning of break down, and receive emergency counselling over the phone and book a face to face session. Confirm there is no risk of self harm and be unable to manage any part of a conversation without crying. Find out about PTSD, Survivor Guilt, Fear of Further Cancer, Loss of Identity…….. there are so many issues, mental heath problems, that can occur after cancer treatment has finished. It isn’t always easy to become a cancer survivor and ‘just get on with things’.

Step 2 – Phone Lisa at the Lobethal Hair Studio to fix the mess and destruction on my head. Find it impossible to stop crying the whole time I’m there. Listen to words of wisdom and good advice. Having someone who knows me so well that knows, it isn’t really about the hair……….. it is more than that.

Step 3 – Attend GP for further emergency assistance. GP proceeds to take away ALL medications and alcohol except 20mg of Tamoxifen (1 tablet for assistance in preventing further cancer) each night and 10mg of Lexipro (Anti Anxiety Medication) each  morning. If I develop a headache at anytime, I am to take nothing stronger than panadol. GP books fortnightly catch ups but advises me to attend the surgery anytime between appointments if I fall apart or it gets too much again. The reason for the alcohol being stopped is because now I have no more hair, what happens if I ‘blackout’ again? I have no more hair to chop off and next time could be a lot more dangerous eg: getting in to a car, walking the streets (there are a few lakes and dams around Meadows) etc….

So, it has now been two weeks since this ‘all went down’. Some days I cruise through and other days, I am fighting to swim against my current of tears…… Nothing sets me off into the spiral of sadness and it is hard to find something to drag me out of it, try as I might.

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I am thankful for some incredibly amazing people who have made it their priority to ensure I know they’re there for me. I want to thank

  • my amazing managers for letting me blubber my way through some attempt at explaining what was wrong with me,
  • for my Bulldog Veronica for fielding all queries about me, shuffling people away from me, standing up for me, protecting me,
  • Vanessa who sends the loveliest words which are so genuine and kind, caring and thoughtful,
  • TK for becoming my ‘stalker’ by sending texts filled with ridiculous world laws, funny photos of her little man Zander, memes of feelings, all while struggling with her own illness and sadness’
  • Tamara, my amazing friend and cousin who has been there before, during and after all of the cancer bizzo sending me her ‘minimum of three things to be grateful/thankful for’ each day and for accepting mine.
  • My Mum for bringing flowers and smiles yet again for this new event in her eldest daughters life.
  • My incredible in laws to be for their hugs and understanding in a certain matter (they know what I am talking about) and for their constant undying love for me
  • John and Clare Mannion for listening and offering lovely words
  • My work colleagues for putting up with me shuffling around from floor to floor to hide from the world for a while
  • The Cancer Council of South Australia on Greenhill Road
  • My friends and family who have, and are, allowing me to cancel all dinner, party and catch up confirmations to deal with this issue
  • That incredible, amazing, loving, supportive, cuddly, funny, compassionate man of mine Sam. Yes, he was angry initially not knowing what on earth was going on with me and thinking  I’d gone on a bender looking for attention. That thought didn’t last long, he realised pretty quickly there was more to it. Sam was there for me taking me to the GP for emergency help and also joined me for counselling at the Cancer Council.

 

I will leave you with some bullshit comments that some people felt the need to say (weather to me or someone else)

  • What on earth did you do to your beautiful hair? It was looking really good! It really was so lovely and curly (my note: it was not curly ok!?) and so pretty. Why would you get rid of that?
    • My side note on this comment – This comment was made to my face by someone who is an associate, not a friend, not a family member but they felt they had the right and need to tell me that my hair looked terrible. I wonder, how would they feel if someone went to them and told them their recent hair cut looked terrible and why didn’t they just leave their hair as it was?
  • She is obviously just wanting more attention
    • My side note on this comment – Um, really? Thanks! I think most people would understand it goes a little deeper than this
  • Why on earth would she have ‘issues’? Isn’t her cancer finished? What is her problem now?
    • My side note on this comment – Firstly, cancer doesn’t FINISH. Secondly, unless you have had such a horrible, emotional, physical event such as this, do not assume you know what it is like ‘once the cancer has finished’ as you put it

The comments I LOVED and heard from a few people were

  • I’m not sure why you cut your hair but I LOVE IT! It really suits you
    • This comment was awesome because I didn’t have to explain why I cut my hair, I wasn’t made to feel ugly, stupid, crazy or weird.
  • I don’t meant to overstep any boundaries but I want to ask because I’m worried…. you don’t have cancer again/you haven’t started chemo again have you?
    • These questions were honest, real, true and there was no other meaning to them other than what was said.

To be continued ………………………..

brit

 

 

 

 

Merry Christmas – I’m Not Done Yet

7th of April I was told I had cancer.

8th of April my breast cancer was confirmed and the fact it had spread.

At this time, I’ll be honest, I did not imagine I would experience such a positive and wonderful Christmas.

Yesterday, I experienced a wonderful Christmas.

I am incredibly fortunate that I  have such a wonderful network of people backing my health and the front runner of this wonderful network is Sam.

He made me promise not to buy gifts for each other this year as we simply couldn’t afford it and naturally, he didn’t stick to his word. I received such wonderful gifts and these were, a Game of Thrones colouring book, a gorgeous breast cancer pandora charm and a women’s health diary.

There is no way on this planet, in this life, that I want to live it without my Samuel Wilkinson.

After my gorgeous Dr Hands surprised me with my wonderful gifts, we then packed up and got ready for a full day of driving and visiting.

First up we traveled to the gorgeous and amazing property of Sam’s cousins’ house at Gummeracha –  Nikki McGrane and Braden Hutt, and wow, what a gorgeous home and setting for Christmas. Thank you so much for having us and I can’t wait to visit again soon.

Here I am with ‘Santa’ Darren!

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There were many laughs and bubbles (Thank you Auntie Susie not only for the bubbles but also for watching you go down the slip and slide heheheheeh) and then we were off to my Auntie Lyn and Uncle Phils house at Gawler.

As you can see, if you know South Australia, we had a bit of driving to do but it was very worth it. Thankfully, Dr Hands did all the driving which left me to drink all of the bubbles out of the Adelaide Hills 🙂

The Poo bit of it all is me. I have finished Radiation. Yay.

I have finished Chemotherapy. Yay.

But my cancer journey hasn’t ended and I do try to be all happy and positive with everyone but it isn’t all happy and wonderful.

Cancer doesn’t really end.

I still have 10 sessions of Herceptin. Ok, so there are no side effects from this and I only have it every three weeks….

Medication needs to be taken for the next ten years.

I have a 1 in 20 chance of getting cancer again somewhere in my body.

I stupidly said I would give up alcohol in January with no end date (I must have been drunk when I made this deal)

But, my point is, whilst the shitty sides are over, it isn’t over.

Another but, I love that I got to see another Christmas.

I Love that I got cuddles from my gorgeous niece Kally and nephew Jordan.

I got to see most of my family at Auntie Lyns house. With lots of laughs and food and drinks.

Many giggles were had at Sam’s family doo this arvo and my goodness, Santa Darren and Auntie Susie on the slip and slide almost had me doing a lady leak in my pants!

I love that I had another Christmas and I have the positive results to see many more to come.

Thankyou to all who have followed my journey so far. There is more to come so stay tuned.

I have loved today as I do with all Christmas celebrations. I can’t wait to celebrate many more.

He is a picture of Sam and I with our lovely neighbour John. (John is in the Middle)

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I do wish that everyone reading this had an equally amazing and happy Christmas as Sam and I had.

I will talk to you all soon, when I get over tomorrows hangover xx

14 ‘Burns’ to go

Yep, only 14 more radiation sessions to go. That includes my one today and the day I have to have 2 in the one day. This will ensure I will be finished with radiotherapy on Christmas Eve!

The burning has started. It is pretty sore, I wont lie. The calendular cream isn’t cutting it anymore so I have to use not only the calendular three times a day but I now have to use a steroid cream as well, three times a day.

These photos dont really do the burn justice but it is like a really bad sunburn. Even putting the cream on hurts the burn.

Apparently, I have to stay out of the sun and try to keep cool. I live in Adelaide and we are not known for many cool days during December!!

Thankfully that is the only burn I am getting so far. The collarbone and shoulder need radiation apparently as this is where the cancer can spread if there are any little bits left over from the mastectomy and chemo.

How anything could survive all of this stuff is beyond me so fingers crossed, there are no little nasties left in my body.

The fatigue comes and goes and is absolutely nothing like chemo. It will just be a day here and there. Or even a few hours where I need to just have a sit down and rest. To combat this, I sit down and rest a lot! They do say that Prevention is better than a Cure.

That’s me for now.

 

Plodding Along

The title says it all. I honestly feel like I am just plodding along through life and I feel lost. Each day (during the week) feels the same. Poor Dr Hands is really struggling to cheer me up and I want to cheer up but I can’t. I just feel down. I feel nothing. I don’t feel happiness.

I thought I would feel this through the recovering from surgery phase. I didn’t.

I thought I would feel it through chemotherapy. I didn’t.

Yes, there were times that I struggled here and there through each of the above but the feelings were so far and few between.

Recovering from surgery was ok because I was inundated with such lovely visitors, love, flowers, gifts, medication etc.

Chemotherapy I had Sam feeding, drugging and watering me. People (my mum) visiting and the neighbours caring for me. Medication to make me feel better and there seemed like a kind of purpose to it all.

Now, I am having radiotherapy and I am all twisted in the head. Is it possible that radiation brings you down? I have struggled with anxiety disorder for many years and I wonder if the radiotherapy has cancelled my medication out?

Or, is it the drive to and from the city each day, sitting in a waiting room that is depressing and full of very old people that brings me down?

Maybe it is the Radiotherapy clinic I attend that brings me down.

The oncology unit I went to for chemo was always upbeat and all of the staff knew me and smiled and hello’d me. Some would ask me about my blog and if Sam wasn’t with me they would ask about him by name.

The radiotherapy unit is different. The receptionists (except one) are grumpy and not at all friendly. The patients in the waiting room are all elderly and so frail looking. I want to feed these people and make them smile but they wont look at me let alone talk to me.

There is a big difference between oncology and radiation.

And another thing. Have I told you that I have lymphodema? Well, I had my first lymphodema massage two weeks ago and oh wow, it was amazing. I loved it. One hour of left arm and left side massage was incredible.

Well, I had another of these appointments today and it was shit. There was no lovely massage but it was some kind of laser therapy. I dont want that. This laser thing just flashed and beeped for an hour as the lady ran from room to room changing all the laser thingies on each of us but it sucked. I wanted my massage. Where was my massage?

The massage/laser lady said that there had been a slight improvement in my elbow crease but the rest of my arm had remained the same. All of my own personal massage and squeezing of the memory foam thingy had done nothing. I want my massage back.

This laser therapy was so much like having my car tuned. I pay a fortune but can’t see or feel any difference.

Then, I had my radiation appointment which was 2 hours and 20 minutes after my crap laser therapy so I took myself out for lunch which was amazing. I went to a city cafe and they made me a gorgeous, gluten free and tender chicken tenderloin salad with a hint of sweet chili and balsamic salad. Amazing!

I had been told that the whole of South Terrace (where my clinic for radiotherapy is) would be closed off today so I made sure I had at least an hour and a half to find some where to park (imagining a two block walk) only to find that the entire of South Terrace was not blocked off at all. The work men had resurfaced the road on the weekend instead so, I ended up parking right in front of my clinic in a two hour spot and at my appointment one hour and twenty minutes early! FFS.

Blow me down with a feather but they had a free spot that someone had cancelled (it was hot today so the patient couldn’t come in) and I went in and was zapped in no time. Quick hello to Professor Borg (he is monitoring my treatment and wont let me lose any weight until after radiotherapy) and I was on my way.

Driving home I said to me,

“Me, I think you should have an alcohol free day today”

I was home for 10 minutes before getting back into the car to drive to the local bottle shop to get some bubbles. No, I do not think I am an alcoholic. Yes, I love the bubbles fizzing on my tongue hehe. AND it is nice on my sore radiation infected throat. It is medicinal!!!

As anyone knows, I do not like the words side effects but use the word ‘feelings’ when it comes to something that has occurred during treatment.

Here are my feelings with radiotherapy.

  1. Burnt throat. It feels like tonsillitis. When I eat or drink it hurts and feels like the liquid or food has to go through a big lump in my throat to get down. The Professor has recommended taking two pandadol before each meal. This is silly because apparently you are only supposed to take a maximum of 8 panadol a day. Has he seen the size of me? Obviously I eat more than three times a day!! Not anymore.
  2. Redness on my shoulder, front and back. So, I am being zapped not only on the ‘bomb site’ but also my collar bone and shoulder because of being HER2 positive and the cancer being known to pop into these areas. The bomb site, where my lovely leftie boobie was taken from, is slightly itchy but nothing too bad.
  3. Depression. I’ll work out why that is occurring and will get back to you.

As usual, Dr Hands is on call for cuddles, kisses and love. He is worried about me, I can see this and I am trying so very hard to make this easier for him but it is hard. He has known me too long and can see straight through me.

If you are new to this blog, Dr Hands is my fiancee Sam and he doesn’t read this blog (Phew).

The recent highlights are

  1. My gorgeous and amazing daughter, Accalia-Jayne, came with me to my herceptin appointment and radiotherapy appointment last Thursday. We had coffee between appointments and after appointments. This girl of mine (22 years old) is an amazing person and can make me laugh, can hold a conversation and has amazing social skills and manners.
  2. My team from work’s Christmas Lunch. I haven’t seen these people since April 7 2015. I love that I was invited to the Christmas Lunch and they all had a hug for me, made me laugh and feel a part of the team again. AND, they want me back hehe. I’ll be back at work soon and I can’t wait!
  3. A trip to the beach with my long time friend Tracey, her son Ben and my gorgeous boy (groodle dog) Brady. We started with a drive to Willunga for lunch and then proceeded to Aldinga Beach where I watched Ben (who is aged 4 foot?? I think about 6 or 7 years old??) encourage Brady into the water with no effort at all. I have never seen Brady in the beach water or, so bloody clean after being in the water! Check out the photo below, Ben took Brady much further into the water but I like to live my life through my eyes and not a camera.
  4. A lovely and gentle visit from my Mum on Saturday. She always makes me feel calm and relaxed
  5. Sam bought me a Santa to go with the Reindeer! He is getting into the Christmas spirit (or just suffering for the cause).
  6. I made a new friend today. Leslie has recently been diagnosed with breast cancer and has MY surgeon and MY hospital. She seems amazing (we are communicating via facebook) but I must remember, these early times of being told of having breast cancer are frightening and I must be sensitive. (I am quite blase about it all at the moment and do not want to be like that with a new cancer patient).
  7. I am still alive.

I shall leave you with a giggle, if you have the giggleness of my neighbour Clare who thought these two photos were hilarious!

Photo 1. Dogs plus reindeer, all happy and awake. Kelly (red staffy x) and Brady Bailey-Wilkinson (white groodle) are kissing in front of Smiley (reindeer)

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This is after all the fun and games

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Ben and Brady

I Made It

My top stayed on through my work Christmas Lunch #1 so put away your bail money 🙂

It was so lovely to go to my work teams Christmas lunch even though I haven’t been at work since April. All of the team members gave me a hug (no valium needed) and I actually felt good. I felt a part of the team and I am happy to say that they agree, (well the mangers agree) to have me back earlier than previously expected.

There is no way, in my opinion, that I need until May 2016, off to recover. I miss my work so much and can’t wait to get back into it.

Here is the look I went for today. Yes, I know I know, I have bragged all about going nude nut (bald head) but I just couldn’t do it to my team mates and I think I did OK with the scarf thing (with help from my neighbours).

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Christmas Lunch with my Team

Sorry for being MIA lately but have been a bit down, nothing much to say, too lazy etc.

It seems all I do lately is do my 45 minute to an hour drive to the Radiotherapy clinic, take off my top, get radiated, get dressed and drive the 45 minutes to an hour home.

Now I can add physio to my schedule for Lymphodema and again, drive an hour to that clinic, take my top off, get massaged for an hour, get dressed and drive an hour to get home.

A visit to my surgeon, you guessed it, 45 minutes to an hours drive (this is all dependent on traffic conditions), take my top off, get fondled and drive that distance again, home.

So today, I have NO radiation, physio or surgery visits but I have something so much more exciting and that is my teams Christmas Lunch!

What I am frightened about is driving 45 minutes to an hour to the hotel, walk in, take my top off, eat lunch and leave!

I’ll let you know how that pans out, do they have Wi-Fi in prison? I might get arrested for flashing but should only have to do ‘half the time’ in prison because I’ll only be flashing the one boob that I have left.

Wish me luck 🙂

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