Bald Barren And Boobless

An honest and comical reflection of my journey through breast cancer

Tag: Mastectomy (page 1 of 3)

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.

 

Talks of Reconstruction begin

reconsrtuction imageI had a pretty awful sleep again, I was awake from 1am to 430am. How is a human meant to cope on so little sleep? Marc let me sleep in and then we saw the plastic surgeon together.

He said that we should be all good for reconstructive surgery in mid to late May. So 6 weeks after I finish chemo, I can have the other mastectomy and reconstruction can begin.  I am excited, but trepidations abound about further surgery. Just the idea of going backwards physically again makes me feel anxious. But I need to do it.

I cannot leave the other breast and wait for it to turn against me too. This happened with my Mum and my sister.  After cancer in one side it returned in the other a few years later.  I just cannot rest knowing this could be my future too.  I asked the surgeon for the simplest surgery possible, he recommended the implant surgery. One scar, 2.5 hour surgery. The expanders will be in for anywhere from 6-12 months. This is to expand the chest muscle and force me to grow more skin to accommodate an implant.

He says that with a recovery on track I may be able to return to work after August. That would be before the removal of the implants but he said the implant switch over with the expanders can be a day surgery if I like.

So much to consider, I am keen to try and get back to work asap, but also keeping in mind that a full recovery now is best. Being self employed has its bonuses but its complications also. I only get paid when I work and its hard to work reduced hours and make a good income. May need to rethink a few things about how I do business.

I am so tired today and also in a lot of pain. Nausea, heat, horrible indigestion are all I experience today. I get home and go back to bed. So much to consider, so many decisions, none of which need to me made today.

Time to rest my sweet, time to rest. Rest is thy best medicine.

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.

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.

Ding! Ding! Round 2

ding ding R2I haven’t slept well at all, I am wide awake for much of the night. Staring into space. I am so caught up in my thought world I don’t even realise I am awake. I keep catching myself just laying there staring into space captivated by my own dread and anticipation of what is to come.

I lay there and pray for peace and a calm mind. I am praying for a sense of purpose in all of this madness and waiting on God to let me in on His plans. As the sun rises I get up and do something probably a bit stupid but hey that’s my prerogative isn’t it.

Of all things to do, I weigh myself. Of course this will make me feel better 🙁 I have gained a few kilos and feel like I am really holding onto fluid. It doesn’t stress me as much as it may have 10 years ago. I know my body is copping a complete scherlacking (I am not sure if I just made this word up or not?) so I need to focus on nourishing myself and easting what I can tolerate.

My poor body has been through the ringer with constant chronic and unrelenting stress, the expectation of just functioning because I need it too, let alone the surgery, trauma and now chemical onslaught.

Marc and I arrive at the day centre, I take my own blanket and some snacks I know I can tolerate. I take some music and some things to do should I feel the need. I’m such a girl scout – be prepared, have options.

Today goes more smoothly than the first, we know what to expect, I have slightly less headaches, my tummy is already playing up but I feel prepared. IMG_1391

By the time 8pm rolls around; the Bus is parked just up the road ready to run me over as I sleep. However, compared to the dread I felt this morning, today has been a good day. Marc and I sat and laughed, as you can see in the pic here, we do have a lot of fun when we are together. He just makes this process so much easier.

I honestly thank God every day for giving me a man who loves me for who I am, whether I look like the woman he married or not. As my body is attacked by this treatment, it will never be the same again. We will never be the same again. But – he still sees and loves me. This is a gift that is beyond measure.

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….

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