Bald Barren And Boobless

An honest and comical reflection of my journey through breast cancer

Tag: tiredness (page 1 of 3)

Hip Hip Hooray

birthday candlesDespite being so exhausted when I went to bed last night, I was awake until after 1.30 in the morning.  I had so much pain in my joints that I just couldn’t sleep.  Even taking some really strong pain relief I tossed and turned until 5 AM.

An absolutely awful thing about today is it’s my honey’s birthday.  Hip hip hooray!!!  Yeah right……. I feel like one of those dying flowers in a vase trying to look nice but failing miserably.

I tried my best to spoil him before he went to work, he seemed to appreciate the quirky gifts we got him.  He’s not an easy man to buy for, whenever he sees something he likes, he usually gets it so it is very hard to surprise him.

We had a nice morning and then I do the school run, go shopping, wash the loads of dirty clothes, and do more washing and ironing.  I also did the kids sheets and made their beds with new sheets.  Why I decided to do this after having virtually no sleep last night I do not know.  I don’t even understand myself at times….

I am so exhausted that I feel really sick.  I really have no one to blame but myself.  I should have stayed in bed, the chores will always wait.  Somehow my mother’s guilt got the better of me.

I made Marc his birthday dinner, I felt as sick as a dog.  I feel like I’m going to lose it at either end any moment.  Not a nice way to try and make someone’s birthday special.  I’m so exhausted I really need to sleep.  I feel so selfish at the moment.  I’m so focused on how bad I feel that I’m unable to give anything to anyone else.  I really hate this.  I am determined that his next celebration will be much more special.

 

Sunday Bloody Sunday

exhausted pup
I had a good sleep with some pharmaceutical help.   After such a lovely day yesterday I was looking forward to another great day today.  I’m greedy aren’t I?

Another excellent church service, they always speak to me in a way that I need to hear which is such a gift.  I come home after church and need to sleep as I’m exhausted.  Denmark wakes me at 5 o’clock.  I’m so exhausted.  I can’t believe more than five hours has passed and I really don’t want to get out of bed.

But it’s our Sunday night family dinner so I need to get up.  My sister-in-law comes to dinner with her beautiful girl Eliza.  Alison, beautiful girl, does my ironing, what an absolute blessing.  At first I really struggled with her helping like this, but then as the exhaustion set in, over time I stopped fighting.  I literally didn’t have the energy.

After dinner my entire body is aching, I’m sore, can’t think straight, blinking is hard, and all I can think about is bed.  I really can’t explain to you just how tired I feel.  It is like a beast I’ve never experienced before.

I feel some guilt as I struggle to spend quality time with my family.  This was always something that was so important to me yet being so exhausted I can’t keep my eyes open.  I’m not even listening when people speak to me because I’m so preoccupied with the pain I feel.  How on earth am I meant to live like this?

So I crawl into bed praying that tomorrow is a better day.  It’s my man’s birthday tomorrow, I pray that he is blessed and feels loved as much as we really love him.

Descending into the depths

sadnessI woke at 2am, then was wide awake until 430am. It’s the weekend so no school run, yay! Thanks you for small miracles and gifts each day. So I slept in, or rather stayed in bed. I feel quite nauseous, sore, slow, everything is buzzing, hot, swollen just yuck!

An old friend from my high school and Uni days called and we spoke for a while, that was really nice. I continued in bed, it just seemed too hard to do anything else. I am finding the nausea is much worse this round.

It’s my 42nd birthday tomorrow. I pray it’s a nice day and I can do something with the family. I have a long history of struggling with my birthday. First of all my Mum was so great at making us all feel like princesses for the day.  She went over the top and made it really difficult for anyone to compare to the big effort she made.

It wasn’t about spending money rather being thought of.  I have so many wonderful memories. Then I got married and my ex Husband was pretty hopeless. He was ok initially but as his world spiralled out of control I was last on the list and I am pretty sure he forgot the last 4 or 5 of my birthdays.  To add to this I left him on the last birthday we were together which happened to be my 30th.

So I have a history of sad days and unmet expectations. The last birthday with him I remember finding out he had spent more at the pub the day before. The forgot my birthday with an “oh f@#k its your birthday” at 12pm, then handing me a broken photo frame.  Special times…..

Looking back he was such a mess how could he do anything else. They were certainly hard times though. So my new outlook is to not have expectations and to spend time with the people I love.  My Husband Marc is wonderful and really makes and effort, there is just so much sensitive scar tissue there.

It almost like each year I compete with the ghost of birthdays past each year and enough is enough. Time for a new way, out with the old in with new healthier ways.  Easier said than done, but at least I am aware and working toward a better way.

So I stayed in bed, lamenting on how much I miss my Mum, particularly when I feel so sick and my birthday is looming. Wondering how she would be feeling knowing her baby girl is on the same journey with breast cancer as she was.

I’m glad she is not here really as she would have been racked with guilt, even though it is not her fault at all. I love you Mum xxxx.

It’s the simple things in life….

change processAfter not much sleep I’m up early the church today. I’m feeling generally okay just a little flat. The message at church was exactly what I needed to hear. It was a message by Ben Houston all about the challenges that comes from every angle when you begin to pioneer again.

I feel like this is a new and defining time for me, for my business, even for my outlook. This journey is teaching me how to redefine myself, to look at what I want for my future and my life, to define what works for me and what doesn’t. I don’t know if you ever noticed this but in my life each time I try and gain ground challenges come up. This is exactly what Ben is talking about.

It’s so important that as the challenges turn up they don’t throw us off course. In the middle of a battle it’s so easy to give up or change direction thinking that is the answer. I don’t know how many biographies I’ve read of successful people that have explained how close they were to victory when they almost gave up. I wonder how many people have been in that exact position except they have given up. I am determined not to be one of those people.

The enemy uses lies and deceit to throw you off course, however, my trust is in God.  I know He has a plan and a purpose for my life and He is always with me. This journey of cancer is a refining process for me. A way of stripping off what is no longer helpful and putting in place practices and mindsets that will help me achieve what is in my heart.

After church Marc and I went to the beach, I took Betty (our pup), went for a walk and then read a book. It was so nice sitting under the shade of a tree with my cute little puppy just spending some time. It was nice to do something so normal for a Sydney summer but something that we have not done in such a long time.

It was a powerful reminder how getting back to basics and doing the simple things can bring so much joy. I want to do more of this, I feel almost normal like I’m not in the middle of this battle when I do things like this it is a welcome rest. I’m only four days away from my next treatment so I am beginning to feel good again. I need to begin to prepare myself for the next round of chemo.

This is just as much a head battle as it is a physical battle.  I seem to learn and understand this more and more very single day. Some may say I’m a slow learner :)

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.

My own worst enemy

 

Again I woke feeling okay but not awesome. Some of you may get tired of reading this because I know I am tired of feeling this. I drag my sorry butt out of bed, get a cup of Green tea and look longingly at the coffee machine. On these days when I feel so flat I crave the idea of caffeine like it you would not believe.

It’s a normal weekday for me, I take the kids to school, I do some household errands, I vacuum and then I decided to treat myself. Again I will be my own best friend and take myself to the movies. Today I am seeing the “Wolf of Wall Street.”  I’ve always wanted to see but had no one to see it with. Everyone else in my world was not that excited by this movie.

It was certainly an interesting experience, I was one of only four in the cinema, an old lady, a woman in a wheelchair, a suspicious man in a trench coat, yes I said trench coat and me. If you’ve seen this movie then you will understand why I felt uncomfortable. I saw more of the human anatomy (mostly female) and also of the dark side of human nature than I ever had before. The fact that this movie is based on a real person makes it even more interesting.

I come home and had a little rest and then get Sam from school. I squeezed in a Pilates session, make dinner and then take the kids to youth. This routine is a great but where do I fit in this one to 2 hours sleep that I am being told to do every single day. Something has to give and I don’t want it to be me. At the moment it is me and its me suffering too much pain and lethargy.

By 930pm I am completely exhausted, I mean I am in so much pain I just needs to sleep. I need to find a way to rest and prevent myself from getting to this level of pain. I also realise I am my own worst enemy.

I have preached work life balance my entire professional career. I am the first person to tell someone to put themselves first, to be their own champion, to take care of themselves because if they don’t no-one else will. How sad that I have not been listening to my own message. This alone is so confronting and makes me feel like a hypocrite.

Luckily I am one determined woman and will not give up on learning this lesson. How can I expect 40+ years of patterning and learning to be unlearned in a few weeks/months. This is part of where my own patience with myself is critical. Tomorrow I have my lymphatic massage I’m hoping it is helpful and that it feels relaxing.

No rest for the wicked, I mean hairless

photoOh my goodness I actually got a little sleep last night. I’m in shock this has not happened to so much time. I am at day 12 of my Chemo cycle now and am beginning to feel human again. As many wise women have told me I need to be careful of being romanced by the idea of my energy returning.

Many amazing women who have walked this road before me have shared with me that I need to prioritise my rest. As many of you may imagine, this is one of my biggest challenges. I am not used to pacing myself, pulling myself first, being kind to myself, being patient with myself. This is like a new language I am yet to learn.

As I have shared previously, I do believe this experience has come to teach. This is how I choose to look at my circumstances and take the gifts from it. One such gift I believe will be for me to learn how to be kind to myself. For me to learn how to give back to myself and how to fill my own tank.

I believe God has been trying to teach me this for many years, however I am as stubborn as a mule. I think it has taken the road of cancer and a complete and utter destruction that comes with chemo to bring me to my knees. And on my knees I am.

Despite this enlightenment I again had a busy day ahead with no planned rest. So whilst I am waking up to the idea of the lesson I am being given I am still yet to put into practice. As one of my business mentors would say, “if you know and don’t do then you don’t know.”

An exciting thing that’s happening today is a new piece of furniture is being delivered. We bought what is called a snuggle chair this beautiful chair that is round, comfy and fits 2 people. Romantically, I think Marc and I had visions of us sharing this chair while we chatted, read the books and just spend time together.  See the picture above, this is the chair in our lounge room.

The current unfortunate truth, is that each time I am near him I have so many hot flashes that I cannot really be near him. What a sad story this is.

Again my to-do list is longer than my energy levels. After church this evening we head home and I am completely whacked. I really need sleep. I also really need to get this lesson and start resting regardless of how I feel. I need to be proactive not reactive. One day it will sink in.  Thank goodness my God is so gracious and patient with me.

Flatter than a Flat thing

exhausted 1I slept ok, better than expected without medication. I wake feeling tired but ok. Tiredness is a permanent state of being for me at this time, Lethargy s like a friend staying on my couch uninvited and I can’t get the to leave.

Marc is out doing some errand and I begin to do some chores. It is not long before I realise I need to return to bed and sleep. The pain in my hip is unbelievable. I eventually fall off to sleep and wake at 3pm, I feel so hot it is like I am on fire.

I have my own personal light bulb moment and realise we have a pool! Eureka!!!! I go for a swim and oh my gosh it is so nice…… I float around I my own cool bliss.

I am not sure what it is but because I am so flat I am craving carbs something ridiculous. All I eat is chips, chocolate and liquorice. The only thing that tastes semi normal is liquorice. It is the only thing that can cut through the permanent metallic taste in my mouth.

Because I have eaten such crap all day I feel really bad by late afternoon. A combination of bad food and guilt has me crippled. I need to just crawl like a bad dog into bed and hide away.

I want to leave today, start fresh tomorrow; I hope my body will allow me to. Part of this is me learning to allow myself to have a bad day, a slow day even a nothing day. I am so achievement oriented and this journey is sometimes full of me achieving nothing except having a day like today eating crap and then feeling sick.

What’s that saying, “some days are diamonds, some days are stones…..”

Running on empty

dog tiredI woke at 1am and was wide awake until 3am. It was a combination of being too hot (internally, hot flushes) and being in too much pain. I got up and walked around for a little while.

These wee hours of the morning can be such bliss and peace or the exact opposite so horribly quiet and lonely.  The time passes so bloody slowly and every bad feeling or emotion seems magnified.  I am always so glad when the sun rises fem these nights.

Today we had vision Sunday at church. This day is always so inspirational, it lies out the vision over our church for the next 12 months. The vision spoken over this year is a year of new beginnings. This could not be more true for me and my family.

So many things will be new this year, Sam is growing as a young man, Moni is doing the HSC. Me, well I am just trying to find my new normal. Marc is balancing so many things and being the rock for us all.  This year will hold many mysteries, many challenges, many opportunities and much growth.

Physically I am in less pain today but I am still dog tired. It is really hard to put into words the gravity of this tiredness. I still don’t really even understand it myself I just know I have no control over it.

Despite being so tired today was a big day. There was little rest, and many errands to be done. Anyone else reading this who has a family knows exactly what I mean. Today simple things like the ironing, the shopping, the washing, general organisational stuff all that needed to be done.

I know some of you reading this may be saying, “Why doesn’t someone else do it?” The simple answer to that is, “Who?” Yes, we have had so much support, it’s almost overwhelming. However, these people have lives to lead too. Additionally, one thing I’ve always struggled with is asking for help.

So this day may take its toll tomorrow only tomorrow will tell. I’m so desperately tired but I can’t sleep. At midnight I decide to take sleeping tablets I just need to sleep.

I’m Feeling ripped off

sad womanI had another restless night. The mouth ulcers are coming back with a vengeance. My head feels fuzzy, (not literally, as I am as bald as a badger). My tank is empty, Marc is still feeling strung out, he is so worried about being back at work and balancing everything. I am trying to keep out of his way, to give him space but it is really hard.

Today, I am leaning on the strength of my Lord. I have none of my own, so I need Him now more than ever.

I have spent much of the day in bed, it’s the Australia Day public holiday and we have not done anything. I must say I feel a bit ripped off in general these holidays. I feel so sore and sick that I am struggling to enjoy any of the usual things we do. I am not able to swim, I can’t think of anything worse than going to the beach; my body is deformed and swollen. The thought of hot sand getting onto already sore places is not a nice thought. It’s not a nice feeling at all, being restricted, but hey I need to be thankful for being here in the first place.

Logically, I know it’s only a season, but it is potentially a very long season. My impatience is showing and it is only early days yet :(. I said at the outset that I want to learn from this experience, to open myself up wholly, to learn and be changed for the better.

I am beginning to realise that impatience and control may just be some of the issues for me to work on. When your world is turned upside down and you realise in 3 seconds that you are breakable and finite in this worldly sense everything changes.

I mean everything……

What is important, what needs my attention, what needs to be let go of? I want to get as much from this as I possibly can so that I can stand at the end and say that it was worth it. You see I am going to go through this regardless, so in my mind I may as well make the most of it, gain what I can, learn, grow, be a better me.

So in my mind I am trying to rise above. In the flesh I am so sore, the skin on my hands and feet is peeling off in layers (it really does not look good), I am swollen and in pain. I decide to try above all else to at least get some sleep tonight, so it is 2 Endone for me and a prayer for some much needed sub consciousness.

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