Bald Barren And Boobless

An honest and comical reflection of my journey through breast cancer

Tag: exhaustion (page 1 of 2)

I Descend Into Toxic Town Hopefully For The Last Time

fatigue
I’m awake at 7 am it’s Sunday morning.  I feel like I’ve been hit by a truck.  No church for me today, I lay in bed until 12.  I was going to try and do lunch today with the conference, the VIP’s, but I’m just too tired.

Besides, I need to get ready for the school week ahead.  My local paper is coming for an interview tomorrow.  I’m so exhausted I need to manage my energy or I may get even sicker.  One thing I’ve learned over the past few months is that the more tired I am, the sicker I am.  And this can last for days.

I used to be so proud of how I could push through almost anything.  This illness, and more importantly the treatment, has taught me not to push any more.  I’m sure there will be a great life lesson in this somewhere.

I’m really keen to get through the really dark parts of the chemotherapy so I can truly begin to rebuild.  I’m excited because this time once I get past the really bad part of chemo, I won’t be having another treatment to pull me back down again.  That’s more exciting than I can put into words.

Today I have nausea, toxic hot diarrhoea, (what a pretty picture I am painting for you), headaches, bloating and such pain in my bones.  Oh, plus the heat, this unrelenting heat.

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.

 

Rainy Days…..

rainy days
I had a good sleep.  As I wake I realise it’s a beautiful rainy Saturday.  I love those days where you don’t have to rush out of bed, and you know you can stay in it to warm to and enjoy the day.

Marc is at work this morning.  I get out of bed, finally, and start pottering about.  I take Sam to the shops and run errands.  When I get home I’m completely exhausted.  I feel so overwhelmed, and then get really snappy with Marc.  I know this isn’t fair, and I’m really sorry.  He understands, as he usually does.  Man I am so blessed.

We have some lunch.  I decide to make a cake as our good friends are coming to visit this afternoon.  I made my famous wheat, dairy and sugar free chocolate cake.  I know you are saying, “What the heck has it got in it?”.  But trust me, it is beautiful.  One day I’ll share the recipe with you.

We had a lovely afternoon catching up with our friends, which was great.  Since I got sick so many friends have stayed away, yet many have stepped up and ensured that we stay connected.  I really appreciate this.

I don’t blame anyone, many people struggle to know what to say and how to be around someone when they are sick.  Can I just encourage you though, it is so much better to say how you feel and support them anyway.  Otherwise chronic illness is a very lonely place.

Sam goes to a friend’s house for a sleepover, Marc and I have a lovely dinner together and watch a movie.  We decide on a comedy, there’s too much seriousness in our life at the moment.

We laugh ourselves silly until our tummies  hurt.  It’s just so fun to let go, forget whatever’s happening in your own life, and laugh.  It was such a lovely night.  They do say the simple things……

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.

Still circling in the woods

dark-forestI slept!!! Yay! Marc and my step daughter are off to school early. I am feeling ok but still have this pure acid diarrhoea and fatigue. After I do the school drop off, I have a small rest then am off to the psychologist.

I have been finding this really helpful just to make sure I am supporting my self along this journey. People have told me that I should be feeling lost of grieving or, hopeless etc. I have not really felt any of these things that intensely, so I am just checking in and ensuring I am giving myself whatever I need.

I am craving the quick fix sugar again, this has to stop, I know how bad it is for me and how it makes me feel. I still think this is because I am so freaking tired all the time.

After my appointment I rested, did my errands and appointments and needed to return to bed. This frustrates me a little but I cannot argue. I am sure this fatigue will continue at least until chemotherapy finishes which is still 6 weeks and then goodness knows how long recovery from that and further surgery will be??

I have eaten so much sugary crap today it is awful. I’m like an addict looking for a hit, but nothing works. This needs to stop; I know I am not helping myself. I feel so bad physically regardless so I know it is not helping.

I have decided that tomorrow I m going to have 2 green whole veg and fruit smoothies each day, breakfast and lunch. I am also aiming to stop sugar completely.  I was sugar free before chemo, not any more :(

I may have leaped too far, raised my expectations too much. Welcome to my black and white world. Just the other day I was giving myself a leave pass, now I have circled back the other way. Wowser, are you as confused as I am. I suppose this is what happens when you openly share your thoughts on a daily basis.

I am just so desperate to feel better I don’t know what else to do. So I go from extreme to extreme. Balance is the key, how do I find it?? Kindness and self-compassion is also the key, am I doing this?? The extreme guilt I feel tells me “No.”

So starting tomorrow I will aim to have 2 smoothies each day and I will share a recipe.

Kylie’s Green Healing Smoothie

Handful of kale,

Handful of baby spinach

2 tsp Vital greens

30g Protein powder  (I usually use chocolate flavour)

¼ cup blueberries

ice

1 tbsp cacao powder

Wizz away in the nutribullet (or a strong blender) and enjoy.  Lets see how I go hey? Wish me luck.

I’m not through the woods yet

valley of the shadowI woke early with really bad diarrhea, sorry to be blunt but it feels like pure acid it’s so painful. However, I did sleep through, which is a blessing.

I am so flat again today; flatter than a flat thing. I have acupuncture today, I am wondering how on earth I will get there when I am graced with a cancellation by my therapist. Small mercies……..

So back in my bed I am, it is humid, sticky and pouring with rain. I don’t know if you have, like me, prayed for those days when you can stay in bed in the rain instead of working.

Well here I lay, in bed, with it pouring with rain, not working, and it is not such a party guys L Funny how you wish for things, sometimes long for things but they are rarely in reality how they appear in our minds.

Apparently, there is a case review of my insurance claim in Melbourne today. I am tense about it; we really need the financial help. It is so expensive even with private health insurance; every single procedure has a big gap. The only exception is the hospital stays and chemo. The advantage of Private health is being able to access treatment faster with the Doctor of my choice.

The other addition is because I am doing medical and complimentary it is really expensive. For example, I pay $110 for acupuncture each time and get $19 back from my fund (and only for 6 sessions). I need this treatment to cope with the chemotherapy, it has made such a difference for me so far, so we are paying for it.

I feel deeply for those who aren’t able to have this choice. Although we are doing it we are going backwards financially. I still need to keep the business running even though I am not working, so there are ongoing monthly expenses with no income. It is such a hard choice, health or finances?

I am angry that I am forced into this space or deciding what is the priority. But I realise this happens to people every single day……

We fall into that typical gap, we have private insurance, we have a mortgage, our kids are in private school, we pay maximum tax. We fall into that category that does not receive help and also pays the most tax.

Yes it is our choice to send our kids to a good school and to have a mortgage. I don’t know how other families do it when they earn less, don’t have insurance and are at the mercy of government help.

This is all too much for my poor toxic brain to comprehend; I need sleep. Puppy school first. It’s hard but helpful. We have a puppy that is a handful, that was not in the brochure. Lucky for her she is too cute. Now I fall into bed, I am praying for sleep.

 

Facing exhaustion head on

arguing BCI slept better, excellent start! Although I feel so empty, the tank is not only empty but there is both dust and cobwebs in there. I have nothing in my calendar or diary today so bed seems like an awesome option.

I am really fighting with myself.  I am craving carbs, I have noticed I do this whenever I feel so low in energy, it is such a hard thing to fight. I have no fight in me for a start so pasta, bread, sugar all of those wicked quick surge, bad for me foods are all I want :(

I have decided to just go with the flow during chemo, it is hard enough getting through each day without placing some unrealistic expectation on myself to eat things my body is repelling. I am eating well when I can and supplementing each day so I will get through it.  Funny it took me 3 months to work out I should just go with the flow.

So as you can imagine, today is not a great food day. I am self-medicating so to speak but not in a good way. The pain I have in my knees and hips is simply ridiculous. I don’t know what to do with myself.  I am craving comfort food like a puppy craves a warm hug.

I’m battling those horrid thoughts of metastases in my bones with the aching. I know it’s a head game, but gosh it’s hard.  Watching my Mum go through bone cancer, knowing I have the same disease, having such aching in my bones and joints, it really does mess with me.

I got a lovely heart lifting surprise today with a soft knock at the door waking me from a deep toxic sleep.  When I open my front door, there is a beautiful bunch of flowers from my 4N family. These guys are the best. 4N is a small business networking group I have been a member of for 12 months.  If you have never heard of them before check them out here.

I remember when I was first diagnosed I was called and asked what could they do? They offered to make phone calls, any paperwork, client calls. I was blown away. Apart from a few very close friends, no one else offered this and it meant so much to me.

In my efforts to be somewhat productive, I made a list of jobs I needed to get done. Funny, when I say needed, it is to fill this weird sense of showing my value.  I have already confessed to how bad I feel and that I am going wight he flow yet I am cleaning things????  Don’t worry if you are confused too join the club with me.

So today I cleaned the plastics / storage container cupboard and also the pots and pans cupboard.  Such a small job really, but so exhausting for me. I do feel better consciously for doing so but physically I am back on the mattress, nothing to give.

So after a rest, making dinner for the family, I am back in bed, exhausted needing sleep. I pray that I can sleep tonight and I am thankful, so thankful that tomorrow is a new day.

 

Down for the count

dog tiredSo it’s Day 2 after chemotherapy.  I slept through the night, it’s a miracle! I don’t usually start of this way, but hey how kool. I am feeling quite swollen and fragile. Like I will break into a million pieces. My hands and feet are hot and swollen tight, my head is thick and full with pain and fuzziness.

I am nauseous and feel the beginnings of the hot acidic diarrhea. How lovely. I have discovered a neat trick though. Use baby wipes, especially the ones with cucumber and aloe vera. Very cooling on a hot and acidic burning butt. I know you may not wish to hear this but it is only shared in the event it may help someone.

It’s Valentines day today but I am not feeling very romantic. I sleep much of the day, try to have some lunch with my Valentine. I lived on anti nausea today.  I feel without it I will surely lose my cookies.

A light dinner and bed for me, such a beautiful way to spend Valentines. Lucky my lovely man and I don’t need to rely on Valentines day to have a rich and loving relationship. He has been so gentle and understanding as I face this daily battle. What is more romantic, seriously?  I know which one I’d pick.   The man who stands beside you with Roses, or the man who stands beside you in the trenches loving you despite the circumstances.  My man, in the trenches with me xxx

Tonight I pray for sleep and for relief from the heat that is madly coming out of my body. My acupuncturist explains that this is my liver madly trying to cope with the toxins. Again my besties come to the rescue, Endone and Valium, I love you xx

Look Good, Feel Better

Beauty mythI am awake from 2am, so I am washed out this morning when it is time to get moving for the day. I have the “look good feel better” workshop today. It’s a workshop sponsored by the beauty industry to help women facing cancer to feel better about their appearance.

Great idea, it has a realty good reputation around the traps. My friend Tammy booked me in months ago. Just as well, I may not have gotten around to it myself.  Tip – If you are supporting someone and you find out about groups like this, do it for them. They can always say “no” closer to the day, but at least if its “yes” it will happen.

I am to take a support person so I asked Al, my sister in law. It was a great day, I learned so much. Came away with free make up and skin care, a few new friends and ideas on how I can make myself feel just a little better when I’m having a bad day.

No rest again today, workshop finished, by the time I did some errands, helped kids after school and had dinner prepped it was time for puppy school. My calendar needs some more gaps – seriously.

I realise I am going to need to say “No” to some things and prioritise my rest but it is so hard. I am so tired by the time sleep is possible but I have pushed too far and am wired. Besides it’s chemo day again tomorrow and if I could put my head in the sand I would. I don’t want it. I don’t want to feel like crap again.

It’s such a cycle of teasing as you get through the worst of the toxicity, you fight to regain some resemblance of feeling human and just as you arrive, it’s time again. It really messes with your head.

ON a slightly different note, I have been watching the “Under the Red Dress” campaign. What and inspiring campaign the woman behind it, Beth is.  I am going to contact them to share my story if they are open.  At the very least it supports their cause.  A cause I find myself very close to.

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.

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