Bald Barren And Boobless

An honest and comical reflection of my journey through breast cancer

Tag: CANCER (page 1 of 2)

Choosing your battles

What a celebration! Last night I got to sleep without Valium yay! Today I see the physio who specialises in lymphatic drainage.  My Oncologist told me at the last review that my arm is a little too swollen for her to be happy with.

Thankfully, the physio said I do not have lymphoedema just normal post surgery swelling. Thank goodness another blessing for me. I saw so many women in my support group that struggle on a daily basis with lymphoedema, I did not want this for me as well. Selfish I know.

He gave me some massage and stretching tips for my scar and chest to increase mobility. My surgeons have not mentioned to me the risk of losing function if you do not increase your mobility with support. The thing that frustrates me about this is that no one told me this I found this out purely by luck.

Apparently there are many women who lose normal arm function following this surgery!!  Women who cannot return to activities, sports or even personal exercise programs wight he same function.  I felt it was unacceptable that I had not been told this.

The physio also challenged me when he asked me about reconstruction. He said to me, “who are you doing this for?” I replied, “it’s a combination of for myself and for my marriage and husband.” I don’t think he understood completely where I was coming from and he began on a rant about how big the surgery is and how dare someone else expect me to do that for them. I was quite taken aback and surprised at his response.

This was obviously a sore spot for him for whatever reason. He asked me about my expected timeline with surgery and recovery and then said that my timeframe is unrealistic. Wow, another blow for me. At the time I thought “I’m so tired I don’t have the energy to get into this with you.”

Anyone who knows me knows that this is not my usual response. I love difficult conversations and don’t like being misunderstood. However, today I just need to leave it be.  I needed to choose my battles

When I got home Marc and Moni have gone to do some driving, Moni is on her L plates and keen to get her P plates by July when she turns 18. I decided to do some Pilates & shake off the yucky feeling I have leftover from the conversation with the physio.

He has planted this horrible seed in my mind that my loving husband is being selfish. I know this is not the truth he has never asked me to have reconstruction for him.  As much as I know my own truth I can’t shake what this man said to me today. I’m also thrown by his statement that my own timeframe for recovery may be unrealistic I need to put this aside until I speak with my plastic surgeon.

I had a word with Marc and told him what the physio had said, he was so supportive and felt this guy really dumped his own baggage on me.  I must say I agree, Im so glad I can talk to Mar about all of this openly.

Tonight my love and I go out to see a movie and have some dinner. It’s been such a long time since we’ve had a date night, we promised each other that we will not talk about cancer, surgery, money problems or anything else that is causing us tension. We have such a lovely time; we laugh at the silly movie and just enjoy being in the same space together.

When we get home my body is so tired but my head is wide awake. I try to sleep to no avail so at 2 AM I relent and take a sleeping tablet.  It’s all about choosing your battles.

Round 2, day 3, I re-enter the valley

woman waitingI slept until 3am which is just gold. I woke because my hips were so sore I could not move but desperately needed to. I am feeling quite weak and shaky. I’m not sure if I’m nauseous or hungry.

Some advice? To anyone out there going through chemo or who knows someone who is, please encourage them to keep a journal. It has helped me so much to map out my response to chemo and how to be prepared. It may be all I have energy to write in it daily, but is also a much needed release valve.

I do feel better on this day 3 than last time but I also know what to expect and they have given me some more anti-nausea drugs in my toxic cocktail to hold me until day 4-5.

It’s both Sunday and Australia day today. I make it to church barely, but am so glad I went. I feel bad for the family as they all stay home because I am so whacked I can’t do any celebrating. I don’t want them to miss out too but they won’t hear of it.

We get home from church and I just fall into bed. I cant even talk I feel so bad. My tank is so empty I imagine dust sitting on the inside of it. I got up and dragged myself to the kitchen to eat and went back to bed, it just takes the edge off of my nausea.

I have awful back spasms so took some Endone to help with this. My hands, feet and torso feel so bloated and hot. If I could Id run away from myself! I’m also constipated which adds to my discomfort.

Marc is heading back to school tomorrow and he is really unsettled. He doesn’t want to leave me but I assure him, all I am doing is laying in bed. I honestly won’t be needing much, just a mattress and a fan to try and keep me cool.

Until now he has been mostly off work during the holidays so we have journeyed this at the hip. The timing of this has been such a blessing for me, if there is such a thing. Having Marc by my side every step of the way, encouraging me, believing in me, holding me up, wiping the tears when they roll down my face. I am such a lucky woman to have his support.

Yes he is about to go back to work but I will always have his support, so I am ok with it. I also know this is but a season, and things will start to improve once chemo is finished. They must.

I came out today!

Kylies Peronal JourneyBefore you freak out, read on ladies and gentlemen.

I woke feeling better today, so good that I did 40 minutes of Pilates. Marc and I went out and did some errands. By lunch I had began to feel the familiar creeping of achiness, pains and general crapiness return. My hips just ache. In my head I wonder about my Mum’s bone cancer that was all through her hips. Yuck…  She had so many aches and pains too….. Don’t go down that road!  not helpful at all.

I had to start the dexamphetamine again today in preparation for chemo in 2 days. They say it can give you a buzz – I pray for that! I am so tired and sore that a chemically induced buzz sounds awesome to me.

So, as I said in the beginning – I came out today. I decided to venture out into the big bad world Bald. It was mostly empowering, I did get a few strange looks. You see, because I look quite well, people say my skin is glowing. You can’t tell my right boob is missing (especially with a carefully placed scarf or if i wear the prosthesis) so I am sure people wonder if it is a lifestyle choice to be bald.

It is quite confronting when you feel that judgment happening though. Anyone who has ever felt judged in any way will know what I mean. I felt the same way when I first separated and divorced. Particularly, amongst some extreme religious people who I felt looked down at me like a quitter or a failure.

However, I know that only God judges me. I also know He has forgiven me, I know He loves me, He is with me and that He will never leave me, so that gives me so much comfort and strength.

I am learning that I am more than my looks.  Now this is a biggie for any female.  The world teaches us that we are our looks.   It’s funny I would be able to say to anyone else, “lovely you are not your looks, you are so much more,” buy my own self-talk is not the same. The battlefield of the mind hey? I heard a very wise man say recently “the hardest person we will ever deal with is ourselves.” How profound.

Funny story – I was out and about with my prosthesis in as you do. I did not feel brave enough to be ‘bald’ and ‘boobless’ in public just yet. I was looking in the mirror in the ladies when I noticed that my prosthesis had migrated north. It’s like it wants to be promoted to a shoulder pad! You have to laugh….                              well I do anyways…..

Marc and I took the kids to Youth at church tonight and after a good rest we went out for dinner. On the way home we stopped in at the best gelato in Sydney “Messina.”

It tasted wonderful at the time but I am as sick as a dog afterwards L One more day of normality until the next treatment….

I am challenged yet again

strong brainI have read and heard this very wise quote;

“We are not Human Doings. We are Human beings!” LIGHTBULB MOMEMT FOR ME. We need to be able to be still, to find quietness, to connect with ourselves and (for me) with God. Just be….. Honestly, this really challenges me. I am not sure if I even really understand what this means let alone how to do it.

However, it is particularly important for me as a travel this winding road that I pause and allow myself time to trust God, to give him my cares and concerns. He has promised to carry our burdens.

I am so much a person who was wired to define myself by my works, Am I good enough? Have I done enough? Will I be enough? This journey is teaching me that this is not the case. God has already said that “I am enough.”

He is my stopgap, I just need to lean into Him and all will be well. I really needed to do this today. Shopping was a nightmare. So many people. So much frustration in the air.

Sam and I had fun, we usually do. I am so thankful that he has such a wonderful disposition and sense of humor. He sees himself as responsible for making me laugh each day. How utterly beautiful is that?

We get the school stuff, Sam has a hair cut and by the time we get home I am literally exhausted! I am in bed with aching joints and a lagging persistent headache that will just not leave me alone.

I took Endone to help me sleep. The wonderfully helpful and insightful Edward Zia wrote a blog, click here to read it, about Marc and I and our story that he sent out into the world today. That was so thoughtful. His words were too kind.  He spoke of me as a warrior and being so tough.  Honestly, I am just putting one foot in front of the other and doing what I think is best for me and my family.  There is no toughness form my perspective,

Once again I find myself feeling so thankful for the people around us who just keep showing up and being there when we need it. Just amazing.

 

 

I begin to feel human again – small steps

small stepsI slept well again! Woo hoo for Endone! I woke at 7am, it’s almost a miracle. The tiredness is still overwhelming; it is truly hard to explain.

I have a fuzzy head and it’s like I am trying to think but my head is full of custard (weird analogy but the best I can do). I still have indigestion that would mame most horses and my tongue is numb.   It is the weirdest thing.

Also my taste buds have changed, I can no longer taste anything but this persistent metallic taste – it is not pleasant. Everything tastes like this persistent unpleasant metal taste, even chocolate…… It’s heart breaking stuff.  The only thing that tastes normal is liquorice, weird hey? Lucky I like liquorice.

I went on an outing on my own today to the shops! Now that’s progress. I think I need to have small daily projects, like “go to the shops ,” “get dressed,” “shower.”  Small steps baby.

Honestly, if my to do list grows much more than that I am setting myself up for failure. I do believe a big part of this journey for me is redefining that I am not what I do. I am who I am and I am enough. I do not need to prove myself through my works.  I have been trying to prove myself through my works for many years and believe me it is exhausting.

I did 40 minutes on the Pilates reformer today so that was a huge achievement. Look, it is slow and it is gentle but its movement, Yay!

Being such an over achiever for such a long time this experience has real smacked me between the eyes. I cannot push through or past this, it has me at its mercy and I must obey. So I will listen to the wisdom of my body, I will accept myself for where I am at, I will appreciate the smallest things.

For example just sitting in the front yard watching Bettty Boo chase insects and butterflies. It is such a simple thing to do but I would never have taken the time to do that before. Daily small miracles is what it is all about.

I learn the unpredictable nature of this journey

dog tiredI slept better, thank goodness for Endone, it helps so much with the bone pain. So it still school holidays here and I have nowhere to be. I decide to take a bath, thinking that it will relax me.

In the bath I am thinking, this is one of my thinking spaces. I am compiling a “To Do” list as I do. After soaking for a good 20 mins in a lovely Epsom salts bath (a very nice way to detox people) I get out and dressed.

I am then devoured by the most indescribable tiredness, I cannot explain to you the depth that this tiredness seeped into my body. I literally went straight back to bed. I was so exhausted that thinking was hard. So I lay down and just be.

The pain in general and the general feeling of illness and toxicity is subsiding. My digestive tract is still inflamed and angry but better. The indigestion is still ridiculous, but at least I know I’m not dying of a heart attack. That alone eases the anxiety.

I played on my Pilates reformer today, only 10 minutes but it was movement and it felt good. I intend to do this more frequently so that my body remains mobile.

I slept on and off all day, and then we got Thai take away for dinner. Some of it had the smallest amount of chilli on it and I feel red raw from my mouth all the way down.

So a little more progress today, I do feel a little better and we will see what tomorrow brings. A very wise woman said to me not to fight the lethargy, to allow my body to rest and to heal. This is not in my nature, I am a fighter, I have always fought to do more than I should to be more, to accomplish more. This war on my body is too much. I need to listen to my body and be kind. Allow my body to rest and heal. Then and only then I believe I will win the battle .

How Long is this Bloody Valley??

sunrise out of darknessI woke at 530 am with a growing pain between my shoulder blades. Initially it felt like something literally stuck in my chest, the pain grew to be unbearable.

The pain just keeps growing, to the point where I don’t know what to do, I move, I take slow deep breaths, I walk, nothing eases it.   I lay there rolling about in pain, moaning, that too does not help.  I really don’t know what to do with myself.

After an hour of feeling like I was having a heart attack I get up and take some antacid, only out of complete desperation. After a second dose the pain began to shift. OMG, that was awful!!

Now I am almost afraid to move, so I make a note that on Day 6 post chemo this may happen. This is exactly why I decided to keep a journal. Apart from the feeling of “I am dying” on waking with his horrendous pain in my chest; I feel generally a little better today.

I still have toxic acidic burning diarrhea, a fuzzy head, I am in slo mo and my entire  body is sore ( like I’ve been hit by a bus).  Apart from that I feel better.

I saw my GP and had Acupuncture today. My GP at Sydney Integrative (Formerly U-Clinic) is wonderful. She listens, she helps, she is always willing to take the time. I am so grateful for her support.

I also had acupuncture today, it helps, it eases my symptoms, gives me relief from the pain and heat coming from my body. If you know of any one going through chemo and they are struggling please let them know that acupuncture may be of assistance. Gosh at the very least it is worth a try.

I am having weekly treatment with acupuncture particularly through the full on assault of chemo. I go home and rest. There is literally not much else my body will allow me to do. So rest I will.

I am believing that this is the beginning of the sun beginning to shine through the darkness of the valley I have been in. This is but a season and it too shall pass.

 

 

 The Valley continues

Valley 2 I did not sleep well at all, too much pain and heat for me to get much sleep. I was awake every hour or so, which adds to the exhaustion. Also, the nights are just so long and lonely.

Marc has always said for me to wake him, but one of us needs to be functioning, so I cant wake him all the time. Besides I am the daughter of a night shift worker – YOU DON’T WAKE UP A SLEEPING PERSON! I was trained well; sleep is far too precious.

I almost cry with gratitude when daylight comes. We spend a quiet day doing some light errands until early afternoon. I am so slow and sore. As we drive past people I see them smile and I think, “How can they?” “What is there to smile about?”

I  am so caught up in my own little toxic dark world. Even blinking seems too hard. My head and body feel thick, fuzzy and hot.   I have bone pain in my back, hips, legs and feet.

I had to give myself the injection again today. I didn’t count to three for quite as long as yesterday but I still took a while. It’s all the head games I play with myself.

So it’s back to bed for me. I hate the thought of it but if I had a tank it would be soooo empty right now.

I need to remember that this is temporary; this too shall pass. I am not stuck here, it is only for a short time and when I get through I will find myself, my energy and my smile again.

Day 3 post chemo – I have entered the valley of the shadow

valley of the shadow So as I have said, I feel like I have entered the valley of the shadow of death.   Don’t worry folks, I don’t plan on staying here. I have not slept at all well through the night. I am in so much pain I just cant get comfortable. My whole body hurts.

I’ve only felt something similar when I was involved in a head on collision many years ago and every part of my body felt bruised and battered. This is similar but with a toxicity like a 24 hour bug from hell.

The bone pain in my legs back and hips is unexplainable. My head is hot and fuzzy, my body is stiff and my entire digestive tract feels bloated and inflamed. Like my system is screaming at me “WHAT HAVE YOU DONE!!!”

I was in the kitchen trying to find something to eat as I feel weak but am scared to upset my system any more. Samuel my quirky gorgeous 12 year old son enters the kitchen and says “Ohh mum your hair has started to fall out!” In my own mind scream, “Not know I am so not ready.” The look on my face must have been priceless, as he soon tells me he is only joking. Oh kool, hah hah love, that’s so funny!!! NOT!

So now I feel paranoid as well as like I have been struck by the toxic avenger. It reaches 11am and I am required to give myself an injection. The injection is to protect my body from dropping too low in the blood count. The nurses showed me how to do it on the first chemo day. They give you the option to come in for 5 days and have it or you can do it yourself.

Guess what I chose? Yeah, don’t want to be a burden, I am far too practical as well, so how hard can it be? The actual injection itself is not hard, you stick yourself in the tummy and you push the syringe then you take it out, Simple!

I know what it feels like, sometimes when you get just the right angle you hardly feel it, its great. Other times you get the wrong angle, and it can really sting and burn. So here I sit counting “1, 2,   3”…nope. Again, “1, 2, 3”…nope. Again, “1, 2, 3”…nope. Now I am getting frustrated with myself, “Kylie JUST DO IT!!!!”

So I do. Funny, it’s nowhere near as bad as I think, a little sting but ok. Man it is such a battle of the mind! I feel slightly proud of my delayed bravery.

The day progresses and I just get worse; the toxic avenger has turned into a freight train that has run me over. Everything hurts; even blinking is hard. I fall into bed and stay there. All of the pain is horrendous, my head and body is hot and buzzing with toxicity. I pray for sleep, please come and swallow me into your peaceful embrace.

 

Day 2 post chemo – toxic city

toxin symbolIt may seem tedious but I am committed to keeping a daily journal through treatment as it helps me to manage symptoms, cycles and to plan ahead. If you or someone you know is going through a similar thing it can really help to identify patterns, discuss symptoms with their health team and help them to cope through forward planning. For example if you learn that days 2-8 are your worst then plan to look after yourself and rest as much as you can during those days.

I was told to expect days 2-7 to be the worst when it would slowly pick up until I felt good and was due for the next treatment. I’m also keen to count at this stage so I know when to expect that my hair may fall out.

I’m such a planner I want to know roughly when so that I am not like in public and suddenly my hair falls around my feet. You would not know the crap that goes on in my head. Imagine your hair just falling from your head all at once. I have – vividly!

So day 2, I woke through the night at 1230am, 130am, 330am, thinking I needed the loo due to my threatening bowel, each time was a complete false alarm. I’m up for the 8am church service. I feel like crap literally, but I need to go and seek the presence and peace of my God.

My head is fuzzy and achy. My tummy is percolating and I am not sure if I can eat, but I know I need too. I feel weak and shaky. I have tingling in my fingers and toes and my hands and feet are really hot. I also have this weird ache in each of my teeth like they may fall out, not nice at all.

I feel like have had the stuffing knocked out of me. I took Maxillon to help with the nausea and took it easy after church. It is Marc’s Fathers Birthday today so we go and see him for a birthday lunch. I didn’t cope too well but it was really important that we spend time with him.

Once I get home I hit the wall and go back to bed. I toss and turn as I am not able to get comfortable. I have really strong back and hip pain. It feels like it is right inside the bones. My tummy remains really upset and bloated.

I have been well prepped by the Hospital staff as to how to protect the family from me. For example, when I use the toilet I am to flush at least twice and wipe down the seat. I am not to share cutlery, crockery or toothbrushes. If Marc and I were to be intimate, we need to use condoms to protect him from how toxic I am.  Now that is scary stuff.

It just blows me away that I have subjected my body to such toxic stuff, but to be honest I don’t feel like I have a choice. If it were just me then I may feel more like playing roulette – You know see if totally natural and complimentary work, or just have surgery and go it alone BUT  I need to ensure I am around for my beautiful son Sam, as a birth parent I am all he has.

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