Bald Barren And Boobless

An honest and comical reflection of my journey through breast cancer

Tag: surgery

My Last Chemotherapy Treatment!!!!

bigstock_road_to_recovery_sign_4438546 I had a slightly better sleep but it’s still broken.  Because my sleep is broken, I feel broken.  But that can’t stop my excitement for today, today is my last chemo.  I’m dreading it but I am also so excited.

 

It’s a really busy morning getting ready for the last chemotherapy plus the training conference that I’m attending today.  I’m trying to get the family ready for Marc and I being away.  I’m also on the phone trying to coordinate my upcoming surgery.  I have the second mastectomy and reconstruction on the 5th May.  I am also trying to have my ovaries removed at the same time.  I’m doing it this way to minimise the amount of general anaesthetic that I have.

There’s a bunch of research that shows just how toxic the anaesthetic is and how it shortens your life.  So far I’m shortened by about 15 years if you go by that theory!!!  Nice huh?  Lucky I was planning to live past 100 anyways……

I’m seeing some specialists next week to discuss the details of upcoming surgeries and work out a plan.  It is very hard to co ordinate to have 2 different surgeons work on you at the same time.

We arrived for the chemo and I need to slow down, I need to get my head in to gear for what’s about to happen.  The mind set you go in to it with is critical.  I need to focus on positive, healing and strength.

Marc and I are in the swing of things now, we have activities to do, the right food too and we also make a video diary as well.  We got some great pics of the staff all protected from the toxic stuff.  I still feel nauseous and I have a fuzzy head, but otherwise I’m okay.  I’m glad to say I will not miss this place.

More Questions Than Answers

faith quote
This morning I was optimistic, I babysat my baby niece Eliza.  It was lovely to spend some time with her.  Thank goodness she’s not running around just yet so I can keep up.  After Eliza went home I had lunch with my sister.  It was a lovely catch up but I need a Nanna nap.

I saw my gynaecologist today and was told that I can’t have my ovaries removed at the same time as my breast surgery.  This really throws a spanner in the works as I really don’t want has too many general anaesthetics.  I need some direction from my doctors.  I refuse to panic. I’ve come too far to let panic take over now.  So Lord I give this to you and I know that you have it in your hands.

I’m really tired now and seek out my mattress to rest.  I wasn’t lying down too long before the kids came home from school.  Then the afternoon ritual begins, it’s not a huge amount but when you are operating on empty, sometimes even breathing seems too hard.  It’s about checking how the kid’s days were, considering what I will cook for dinner, working out what washing needs to be done and encouraging home work to be done.

By bedtime I am so achy and tired.  I’m so desperate to sleep that my good friends – Endone and Valium will be necessary.  So many decisions, so little energy to make them, some days everything seems too hard. I’m sure things will feel brighter in the morning.

Love Moves Mountains

MountShasta-HolyMountainI wake after an average sleep, today I see my Oncologist.  In general my doctor is really happy.  She says my white cells are low, but manageable.  She explains that my body has handled the chemotherapy relatively well.  I put this down to being so meticulous with my diet.

I’ve tried so hard to nourish my body with good food and rest.  I haven’t been perfect at this but I’ve given it a great shot.  Because I’ve handled the chemotherapy so well my doctor thinks we can move my second surgery forward to the end of April, instead of June.  This means I will have my second breast removed and begin the reconstructive process at this time.  I’m also considering having my ovaries removed as the tumours were oestrogen driven.

This afternoon we get more questions from our Insurer about my claim for financial support.  They are questioning whether or not I knew that cancer was present before I put in a claim.  We know this is the insurance companies job to question every aspect, but the idea that they are questioning my integrity really, really hurts.

All I can do is give this to God and believe that He has it in his hands.  Tonight we were with our amazing Connect Group from church.  It was such an amazing and supportive night.  The importance of being surrounded by such positive, uplifting and supportive friends is beyond words.  God you are so gracious and loving it is beyond my words to explain how much you mean to me.  Your Love alone can move mountains.  I am so glad I can share this very big, very ugly, very immoveable mountain with You.

A New Year dawns

sunrise & jettyIt’s the 31st of December 2103. Everyone except me goes to the beach and I go to my sister Gerri’s. We just hang out and talk and spend time it is really nice, we also go to lunch with some really close friends of hers. I just did not want to go to the beach with my wound still being so sore, the heat is just not compatible with how I feel, and I certainly wont be going near the water just yet.

So I have a lovely day with my sister Gerri, she is a cancer warrior herself and is an inspiration to me. She has had a double mastectomy and has not had reconstruction. We laugh together about the down side to prosthetics. No matter what you do or how you do it they wander. I am sure when I wear mine it has a goal to be a shoulder pad, it always works its way up my chest to the wrong place.

My sister laughs and talks about how hers usually work themselves together into the middle of her chest, still not a good look! At least we can laugh hey!

New Years Eve comes and goes; it feels so surreal. I’ve never been a real fan of NYE, I am the sort of person that believes when you need to change just do it, don’t wait until a new year comes along think of all the time you’ve wasted!

We spend New Years Eve with my family. The kids have a ball, the adults sit and drink, reminisce, laugh and then as soon as midnight strikes we head home completely stuffed!!! I just have no energy at the moment.

I wake at 3am in our friends house having the most incredible night sweat that I can hardly breathe. I get up; go to the loo, splash water on my face and then curl up in the lounge room where it is a little cooler. They have air con but it is ducted and they don’t have it on so I don’t want to turn it on. I lay out in the dark lounge room for hours until I can go back to bed.

Eventually morning comes and Marc wakes up. He reminds me that I need to start taking the Dex (dexamphetamine) in preparation  for the chemo. It hits me, “SHIT chemo starts in 2 days.” Oh man, it didn’t feel real until right now.

I take the dex and a few other supplements I need to begin to take and I am feeling really emotional, like “stop I want to get off, but I can’t. I go and have a cry our friend comes in and spends time with me. She reminds me that no matter what – my mind cannot be touched. My body can be cut and poisoned, but my mind is mine. I can spend time with God, I can focus on whatever I choose too and it will be ok. What a powerful reminder!

We decide to head back home today in the afternoon so we have two sleeps at home before treatment starts. The trip home is peaceful; we are both in our own heads thinking, wondering, “what if” ing.  It is nice to be home in our own bed.  There is some type of unspoken security about your own bed.

 

 

Your body is like a car

old car

What do you yearn to drive? A Ferrari, Maserati, a Bugatti, a sleek Audi, a Mini cooper, the potential list goes on…..

You may not dream of a lovely car, you may be more practical and dream of a house or crave a luxurious holiday. So if you don’t dream of a car what do you drive currently? A sleek, clean, well maintained vehicle, an unreliable bomb or something in the middle?

Just recently I heard a very powerful analogy that made me stop and think. It was how you treat your car may be a mirror for how you treat your body. At first this may make you say, so what? But take the time and play along.

Many studies have been conducted that state how you keep you car says much about your personality. Forbes magazine in 2009 wrote, “Porsches smack of success. Hondas preach practicality. And, according to a recent report, Chevys proudly proclaim of their owners, “I don’t use the Internet.”

How you treat your car also says a lot about how you treat yourself as a person. If you car is pilled so high with old Maccas wrappers, bubble gum, cassette tapes and old tissues it may scream “disorganised.” If it is clean, there is no dust or cobwebs insight it may scream “perfectionist” or that your car is a big priority for you. Again you may be somewhere in the middle.

For me, I expect a lot of my car; I don’t maintain it, well. I expect it to start without issue and not to breakdown. I only notice it really when it isn’t working. That is much how I used to treat my body and my health. No nurturing in sight, how sad for my poor body, it had to scream for help before I was forced to stop and listen.

This is a powerful analogy for me because to showed me that I took both my car and my health for granted. And who knows that the fastest test to rectify this is when what you have taken for granted is taken away.

So when I was diagnosed with breast cancer I was forced to stop and take stock of how I had been treating my body and my health. I had expected to always have my health, that nothing would ever get in the way of me doing what I needed to do each and every day.

It is a very different reality now, after 3 surgeries, Chemo and Hormone treatment my body is screaming out for some time out and nourishment. I no longer can take my body for granted, in fact it is more like, “what will my body allow me to do today?”

So although this may seem like a silly topic without much meaning I ask you to take the time and consider how you treat your car, and or your body. After all they are both vehicles we use to do whatever we need to do.

If you need to carve out a little extra care for your beloved vehicle / body please do it before it just stops working from pure exhaustion. It’s always better to prevent a problem from ever happening than to begin to treat it after the collapse.

 

It’s all too draining

quotes1Saturday  7th  December

Marc and Monica go to South Australia for the weekend. I am home with Sam for the weekend, I thought no problem I won’t be doing much. On the first morning that they are away I am innocently in the bathroom having a wash.

All of a sudden I notice that there is a strange sound. As I am standing there I notice that the length of drain that was inside my chest has fallen onto the floor! I didn’t really feel anything. But I am looking at this thin king “now what do I do?”

I guess it wants to come out; I am not sure what to do? I call my sister who is a medical professional, she is always great for advice, she does not answer, Marc is in mid air, I can’t put it back in, I decide to call the nurse. They say they will be there asap, they come 2 hours later. I have put a dressing over the top as it is oozing, lovely!

I am skipping about the house as much as a one boobed sore woman can skip, trying not to panic. I am sure I look like an epileptic cockroach. Oh well Sam is sleeping in so there in no audience.

The nurse arrives, she is calm so then I begin to calm down too. The drain is out, the dressing is removed from my chest. I must say it is freaking me out, the scar is healing well but it looks like the 2 edges of skin are just resting together and can open any time. I begin to have these visions of the flesh parting, it’s horrible.

My wound is so sore, I thought they said when the drain comes out I will feel better I am just as sore if not sorer. It may be due to all of my jumping about previously in a panic.  With time, as the drain pain lessens, I can move a bit more freely without the bag attached to me.  I no longer look like a lost librarian with my shoulder bag.  I feel like I am beginning to make some progress.  Yippee!

 

 

Adjustment, my new favourite word…..

hands-held-tight

Monday the 2nd December 2013

I am home, which is so nice but also weird. I am such a carer, I like to look after people, so being in the reversed role is not easy. I know it is a gift for others to allow them to care for me and that it is selfish to not share that role. So I am trying.

I remember when my Mum was in the final stages of her disease and the cancer had progressed to her bones and organs she needed 24 hour care. As a family we all rallied as much as we could and looked after her at home. Well, to be specific she moved in with one of my sisters and we did our best to support my sister. Obviously, most of the care fell on this one sister, until mum was in the final stages and we were all there together.

My Mum fought this care, she too was a carer and she did not allow us to care for her. This broke most of our hearts, as we just wanted so desperately to care for her as she has so lovingly cared for us growing up. She struggled and in many ways became frustrated, as she was less able to do things for herself.   This translated into so much tension for her as we tried desperately to love and look after her. Fighting about something like this was the last thing any of us needed.

So seeing this battle and feeling it on the receiving end, I do not want to be the same I want to allow others to care for me when I need it. It is not easy it does not come naturally to me at all. I learned from my Mum to care for others, not to receive.  She taught me well, actually she taught all of her girls well.

My Mum would not ever ask for help, she walked on a fractured hip for weeks before the Doctor would even Xray it for her. I remember him saying to her, “if it was broken there is no way you’d be walking!”   He did not know my Mum hey!

So I am adjusting to asking for help, even getting out of the chair is hard; my chest is just so sore. The unexpected pain is the drain site. The drain is through my chest and into the space where the tissue was removed from my breast. There is about 0.5 cm of tubing wound up and around my chest. There is a bag attached and each day a Community Nurse comes and measure the fluid makes sure there is no infection and drains the bag.

The drain it self is so sore at the site of the entry into my chest. The nurses refer to it as “drain pain.” Apparently at times the drain can push on or aggravate nerves, this causes a burning pain that is hard to describe. This is the worst part so far, it is so painful there are times where I am afraid to move because it is like a hot knife in my side. They say it will be in for at least 2 weeks – too much fun!

I am propped up in bed at night unable to sleep well; I am a stomach or side sleeper so this is not acceptable. When I do sleep it is due to pure exhaustion. Sleeping pills anyone? I have a few to play with, most of them get me to sleep but I wake up at inhumane hours and then watch night time TV, which is scary.

I have woken poor Marc so excited about steam mops and all kinds of gadgets, selling him all of the benefits that have been drummed into my subconscious through the wee hours. You are so vulnerable at this time of day! Marc is thinking, “hide the credit cards!!”

It’s quite worrying really, how many people fall prey to this unrelenting marketing when they are at their weakest. Perhaps I should start a group called “Home shoppers anonymous” “Hi My name is Kylie, I shop at 2am from my darkened bedroom whilst wearing a snuggy purchased through this very shopping method.”

Surely I am not alone, am I?

 

 

It’s cut off day

fearless quote Thursday 28th November 2013

Surgery day has arrived very quickly! We arrive at St George Private Hospital by 6am. We get all booked in and fill in all the paperwork. I have been nil by mouth since midnight.

The first “procedure” of the day is to have radioactive isotope injected at 9am. This is to see if any cancer has travelled out of the breast to the lymph nodes. It is a fairly new procedure so I am glad I get access to this new technology so to speak.

We meet another lovely lady and her family in the waiting room. She is there also to have the same procedure for a lumpectomy today. You can just see the fear on her face. Poor love. We make small talk and try to act like everything is going to be ok.

My lovely man Marc is with me every step of the way. Any one who knows us knows we cope with life through humour and lots of it. The poor technician that takes some images of me is very straight laced. Marc is trying to make him laugh and he is almost tripping over himself just to get out of the room more quickly. I am laughing so hard for a moment I forget what I am at the hospital for.

The injection of the radioactive substance really hurts but it only lasts a little while. This will trace the pathway from the breast to the lymph nodes so they can be biopsied and tested for cancer. I am then escorted back to the preparation area for surgery. I wear what I think is my most comfy mastectomy undies only to be told they are made of the wrong fabric and I need to wear these ridiculous paper ones. So uncomfortable, honestly there is no end to the embarrassment you experience.

The Breast care nurse comes by, she is lovely and makes me feel really at ease. She explains that I will receive some support regarding a prosthesis after the surgery and also receive support at home post surgery due to the drains I will have in place.  She also tells me I will get a soft prosthesis and a bra to wear after surgery.

The anaesthetist comes by and I feel like he has stepped of the set of mad men, he looks like he is right out of the 1960’s. A lovely man, funny, happy to chat, I am glad for the distraction to be honest. Its getting near 12 and I still haven’t gone in for surgery. I am becoming really thirsty and agitated, lets get the ball rolling people!!!

I finally go in for the surgery at 1pm. I get the smooth talking South American orderly who is as smooth as silk. He is wheeling me along and says in his smooth accent “So what is Santa Claus going to get you for Christmas?” Without even thinking is say “Breast cancer how about you?” Poor guy, does not have an answer for that and I am far too focused on the next part of my day to apologise.  I didn’t mean to sound nasty that is my bald sense of humour at times.

I am aware that I am awake and back in room by 5pm, I feel sore but ok.  I have a dressing on my right side chest and a drain coming from the right chest wall as well as a PCA for pain. At the push of a button I can get pain relief. Marc is there when I wake up which is nice. He has to leave at dinnertime so that the kids get fed, and I settle in for a quiet evening.

By 10pm I have the nurses encouraging me to get out of bed and use the toilet. This is not easy, it is very painful to move and I am not able to go. We realise pretty soon after a few attempts that it is more about performance anxiety than a surgical complication. PHEW!! I sneak to the loo by myself and am able to go, then tell the nurse that all is well.

Then at about 1030 the anaesthetist comes and says “hello.” What an unexpected and lovely surprise. After some routine small talk, he asks “so do you remember anything during the procedure?” I answer, “No should I?” He responds with a weird, “Nooo”.   He then vanishes into the night.

After he has left I look in the mirror and notice that I have a black eye!!! What on earth happened in that operating room?  As I lay there, laughing to myself,  pondering the endless possibilities I drift off into a broken sleep, first day after my mastectomy, I have survived, in fact I did quite well, I wonder what tomorrow will bring?

Decisions to be made

tough decisionMonday the 25th November 2013

 

We see the Doctor again, he says “the second lump in the right is cancer, the left is benign”. He then says “You need a mastectomy, and I can do it on Friday”.

In my head I am saying to him, as if you are touching me dude! You can’t even remember my name how do I know you will remove the correct breast! I actually say, “I want a second opinion and will see another breast surgeon”. He mumbles uncomfortably, “yes sure you can do that, it is your right, I am sure he will say the same things as I just have.”

I call the Doctor who was recommended to me by the radiologist. He is back from holidays this very day; they agree to squeeze me in this Wednesday as in the day after tomorrow! – Thank you God. At least there is minimal wait time this time around. I don’t realise until much later how unusual this was. This doctor has a waiting list of more than 3 weeks!!

We begin making contact with everyone we need to tell. This is so taxing. Repeating the same story, dealing with the shock and emotion of the other person, making sure they are ok with your cancer diagnosis, it takes a real toll.

We get practical and do some group text messages, which really hit home for some of our friends. They respond with shock, calling to say “how can you tell us by text?” At the time this was really hard however reflecting back I am sure this was just their shock speaking. Practically we seriously couldn’t tell everyone we needed or wanted to tell.

We know more now so it is decided that we need to tell the kids. For those who don’t know we have a blended family. Marc has two amazing kids Josh, 20 and Monica now 18. I have the wonderful Samuel who is 13. Moni and Sam live with us in Sydney, Joshua lives in Adelaide closer to his Mum. Marc tells his kids and we tell Samuel. I decided to be really open as I remember what it was like for me as a kid not knowing the full story with my Mums health crisis. When you don’t know you fill in the blanks and that is a scary place.

I used the word cancer, and encouraged him to ask questions. His first question was, “will you lose your hair?” I said “maybe, maybe not, that still needs to be determined, but I am having surgery to remove one breast first.” Samuel is such a deep thinker, he took his time and then said “well Mum, if you lose your hair, I will get you a really cool beanie.”  What a sweet heart!

I watched him like a hawk to ensure he was ok. I encouraged him to ask me anything he wanted too promising that no question was silly or too hard. I also shared with him that I really believed that I would be ok, that I felt that God would look after me. I didn’t talk much with Moni about what was going on, she seemed to internalize it and to be honest at the time this happened we had not been in a great place for a long time.

On Wednesday 27th November we see the Doctor for a second opinion. He agrees mastectomy is the best course of action and can do it next week. I say “the other Doctor said he can do it Friday” he says, “let me check, oh I can do it tomorrow.”

Holy crap that was quick! He explains the process and says that he will also do a sentinel node biopsy to determine if the cancer has spread to the lymph nodes because that will change treatment options. I explain that based on my family history I want both breasts removed and now is preferable.

He listened but said “Look my first priority is to ensure we get the cancer under control, until we get in and do the pathology we don’t know what we are dealing with. We need to control cancer first, then discuss the other mastectomy, but I wouldn’t necessarily agree that that is your best course of action”.

I appreciated his honesty and candor and agreed that first priority was the cancer. I also needed to know that he would listen to my perspective, and I felt he would. So we agreed to go ahead and left with all of the paperwork.

We leave and call HCF, do you know until this point we didn’t even know if we were covered. Even with cover, upfront payment was $2000 just for the surgeon. I am nervously on the phone with a consultant and yes we are covered – thank God!

Marc and I then book in for surgery tomorrow and then go and get some new PJ’s for hospital. I’m going to need stretchy lose tops that allow good access to my chest.

I decide to make tonight a celebration so we have a “bye-bye booby” cake that night. I make a cake to represent my right breast. I want tonight to be a celebration not a sad event. So we crack open the champers, we laugh at my ridiculous rendition of a boob cake, it really doesn’t look like a boob. Any caterers or creative cake makers out there, this may be an opportunity for you?

What a day! What a week, and tomorrow the real fun begins.