Bald Barren And Boobless

An honest and comical reflection of my journey through breast cancer

Tag: chronic pain (page 1 of 4)

Just Walking the Dog

DogWalkingI slept okay and Marc left early this morning. I have decided to try some light exercise today after school drop-off. I walked our pup down to the chemist and back, my new best friend. This was her first walk an important milestone. There’s a long way from both of us to go yet but it was great.

I am committing to walking my pup  every second day and then building up to daily.  I need to do this for both hers and my benefit.  She has so much energy, and needs to use it.  I have none but know walking will help me feel better and also help get all of the toxins out of my system.  Besides what could be better than walking in the sunshine, puppy bouncing by my side???

I met two people on the way to chat to; it’s amazing how interesting puppy makes you. When I got home I stretched and then did some errands, these things never seem to end.

I slept for two hours this afternoon and tonight I see Peter Walsh with my sister-in-law.  You know Oprah’s go to de-clutter guy? if you don’t know who he is check him out here.  Don’t know how late this will go but we’ll see, I’m excited to be going out and doing something fun. I’m quite sore after my walk but it’s a start.

I feel I’m ripe for a de clutter moment.  It’s funny how when your life is put on “hold” how much crap builds up, then it just seems to grow and take on a life of its own…..  Maybe I should adopt Peter?

So, tonight we actually met Peter Walsh, what an awesome guy! We were in the upstairs lobby and he walked straight up to us like he knew us and said “hi” to my sister in law. Now she’s in love with him, with de cluttering and all things organisational so she nearly fainted. He said a name that was not hers. She politely said her name was Alison and he said, “wow you are the spitting image of one of my best friends”

Totally made her night, and why not!

How bizarre…. her doppelgänger is her decluttering idols bestie.

It was a great night out. It felt good to do something normal like go out. So simple but it has not been a part of my life for months now.  I need to try and do some more of this when I feel up to it.  I am sure it will help me get better and back to the land of the normal, whatever that is….

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

The rise before the fall

rise fall arrowToday I woke feeling okay a little sore but okay.  Today is a busy day I didn’t stop all day between doing a little ‘Pilates’ to keep me moving, then washing, shopping and cooking dinner; phew!! It’s been a big one.

I had a great chat with mr Bonus daughter morning today about her ideas to the future. She’s so keen to explore the world and do a gap year after she finishes year 12. I believe it’s such a great idea for her and what an opportunity that may never present itself again.

By afternoon I’m ready to relax. I put my feet up and watch some mindless TV.  I have such a pile of books to read, I think I’ve bought everything ever written on the subject of breast cancer.  I’m doing this because I want to connect with the universal experience whilst knowing that my own experience is very individual.

It’s amazing what a gift that is reading about someone else’s experience and seeing how you relate to that. There are so many weird things that happen to your body during this journey that only another person in the same journey can share with you.  So many little things that seem almost too weird to talk about I will find in the pages of a book and suddenly realise that it’s okay.

For example, since starting chemotherapy my feet have been so painful.  To the point where first thing in the morning I can hardly walk.  It’s like plantar fasciitis but more painful for me.  I struggle so much with it.  It’s weird how sore feet make the little things so much harder.

Otherwise, I’m feeling pretty good in general.   It’s actually quite sad to think that I’m going to feel like crap again soon.   I’m also approaching my birthday which is always a weird day for me.   It’s weird for many reasons.   Firstly because my beautiful Mum is no longer with me.  She used to spoil all of us so much on our birthdays.  It wasn’t about spending lots of money but about making you feel like a princess that the day.

Secondly, in my first marriage, as the relationship deteriorated I had at least four birthdays where the day was forgotten by my ex-husband altogether. This was really painful for me. I then separated on my 30th birthday which is also a painful memory from me.

I’ve taken so much baggage along with me that my birthdays are always and mixed bag of emotions. This one will be interesting not only because of the journey I’m on, but also because I’ll be in peak time of the effect of the chemo on my body. So I’m lowering my expectations and hopefully things will all go well.

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.

Another visit to the Oncologist

Another night of better sleep, again this cool weather is such a gift. Today I’m off to see my Oncologist again. They always see you in between cycles of chemo to make sure that you are on track.

I join the other women in the waiting room all at various stages of treatment. Some have hair, some wear wigs, somewhere scarves. We all share the physical and emotional scars of this journey. There is this unspoken link between us all, this unspoken understanding that is hard to describe.

You know just by looking at each individual that there is such a powerful story that is their life. Whether or not they’re married or single, parents or not, doing well or struggling. Much of this is hidden from public view. It is only by being on a similar journey that you see the burden on the shoulders and the sadness in their eyes.

My Oncologist tells me that my white cells are now too high. This is because the injection that I need to give myself after chemo has been too effective. the blessing to me is that I really need to give myself three injections after chemo now not five. Woo hoo!  Another small gift, I’ll take it!

My Oncologist also gave me another script for Endone and Valium, to help me sleep and to reduce my pain levels. She described that not everybody gets the joint and bone pain that I am experiencing. She also explains that unfortunately this may mean that my response to Tamoxifen will be similar.

She refers me for some lymphatic drainage massage and I have an appointment for the weekend. The funny thing on my list the today is to have lunch with a very good and very caring friend. She cooks me a healthy and beautiful meal and we just sit and talk. It’s so refreshing to just sit and talk about other things than cancer. It’s amazing how in such a big and busy life that cancer can become the focus. I don’t want this to be the case so this is a lovely and refreshing change.

I get home and have a short rest, yay I’m learning! Unfortunately the rest was not long enough and by 8 PM I can no longer think straight. My entire body is aching and I need to go to bed. It’s been a big day it’s time to call it a night.

First day at support group

Again I slept a little better, I think it was because it was a cooler night. Having such call with air in January and February is such a blessing for me. However I still woke feeling like I had been hit by a truck.

That damn truck is never too far away. Thank goodness I have acupuncture today. It always helps me to rest, she always addresses my worst symptoms, I always feel better afterward. If you are going through any challenging illness and have not tried acupuncture I really encourage you to see if it would work for you. How do you know if you don’t try?

I’m so flat all I can think about is my bed. After I finish acupuncture I head straight back to bed. Today is an exciting day, I get to attend my first breast cancer support group tonight. I’m both excited and a little nervous.

I am usually the person running and organising such groups. I’ve always believed in the power of groups. When I went through my divorce the support group literally saved my sanity. There is something about being in the company of people that truly understand that your journey that is so healthy and helpful.

Support groups allow you to see that you are not alone. That is the wonderful thing about them. so I will put on my brave face and go and check it out. That is the least I can do.

The people at the group were very welcoming and have all been through some amazing journeys. Tonight I’m the only one going through current treatment so I feel a little bit alone however everyone is so welcoming and willing to help. They have also been down the road that I am on which is such a gift. I leave it feeling encouraged and understood, for this I am truly grateful.

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.

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