Bald Barren And Boobless

An honest and comical reflection of my journey through breast cancer

Tag: Mastectomy (page 2 of 3)

Anyone for Scones??

photoSam comes into the bedroom really early. He is really hot and feels sick. It is a really hot morning so I ask him to come sit with me by the pool. He ends up getting in the pool to cool down and I stay on the side.

I’m sitting there when Marc comes out and says hey babe there is a heap of hair on your top. I touch my hair and it just comes away in my hand like fairy floss. I wait for the dread, for the tears but I just kick into ‘manage it’ mode again.

I go onto the bathroom and just keep pulling handfuls of hair out. It’s Sunday and we are due to go to church. So I ask Marc to give me a buzz cut. I didn’t think I would cope with Marc doing this but I am really ok with it.

Marc performs the deed and we do some silly shots along the way. After all when else will I have the chance to have a real Mohawk??? (See picture above.)  Yes I was trying to look like I and attitude – you know punk rocker isn… not sure if it worked…..

I am surprised at how ‘ok’ I am. I was so worried about the emotional weight this process would take but I actually felt free. I felt at peace.  Marc takes a photo of the two of us, (see next picture), and before I know it he has posted it on his timeline on FB!

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Under normal circumstances I would not want my photo posted at all, let alone my first bald shot.  Again I was ok with it.  I did ask him to let me know “before” he does that just so I am aware.  But still amazed at how I felt.

I wear my cap to church for the first time. I feel like I stand out like a sore thumb but I will get used to it.  One yucky thing is how hot my head is.

In the foyer at church Marc is talking with a new woman he has just met, (he does this all the time). He introduces me to Helen from Chicago. She is a bubbly friendly woman. It’s her first time here, she is on holiday and has popped in.

As we are walking into the service, she stops me and says “can I ask, have you got cancer?” I respond openly “Yes, Breast Cancer, I lost my hair today so this is the first time I’ve worn one of the hats.”

Helen tears up as she explains to me that she is a breast cancer survivor and this is her anniversary celebration trip for ceasing treatment. She explains her hair has grown back and she is feeling human again. She looks me right in the eye and says “It’s going to be ok.” By now we are both crying and hugging. It was just such a beautiful miracle to meet her on the day when I was feeling vulnerable and unsure.

The gift of meeting Helen that day will never be forgotten. This is another example of how God has just provided for me when I need it. I am so blown away at the miracles and endless support and love that surround me.

I never thought I would say this but my B day has been such an amazing day. It has been such a gift in more ways than one. Now its time for me to embrace my scone.

Finding my inner child

letting-your-inner-child-outI am awake at 230am in a complete sweat, I had to spray myself and stand in front of the fan to try and cool down. I eventually go back to bed, but it is only broken sleep interrupted by bouts of me being on fire.

My head feels cloudy today, unsure if it is because I had a glass of wine with dinner last night. Found it hard to say No at the lovely French restaurant.

I decide to do some light pilates today, try and get this body moving again. We also had a professional development session with one of my business mentors. Despite stopping work and pausing the business we decided to continue to invest in ourselves and in the business.

It was a great session in fact it is where the idea to blog is born! I feel so determined to share my experience so that others don’t feel alone. I know everything I have read has helped me to feel less weird and more part of a community of people experiencing similar things.

I saw the psychologist today, he was recommended by my Naturopath. She said that the shock of such a diagnosis and surgery etc can take quite a toll and also can sneak up on you. I have felt in coping mode since it all happened and wonder if I am ever going to crumble or lose it completely.

It was a really interesting session. There was a real focus on me and acceptance of myself. For me to focus on what I am doing that works and to learn to appreciate myself more. Such foreign concepts for me.  Another bonus is that he is a cancer survivor, so he knows what it’s like to be part of “the club.”

We identified that the part of me that had to grow up really quickly at 8 years old when my Mums cancer had spread to her bones has been a real driving force for me. Whenever things get tough I go into Mrs Fix it mode as the expense of my own well being. This little girl who needed to be loved and protected from the fears of her mum dying felt she had to forgo those and be the support for her family. Too much for a little girl to do. So its no wonder I turn into a workaholic, lacking the ability to nurture myself or be kind to myself.

So I will be learning to reconcile with that part of my past, I will learn to allow my inner child to know she is safe and loved and learn how to be carefree. Something I have no concept of.

Lots of learning here for me, but I am excited. I always promised myself I would take whatever I needed to take form this experience, to learn and grow. I will not go through this without taking from it all I can to become all that God has destined me to be.

I am already seeing how little I took care of myself. How I have always given so much to others but rarely replenished me. No wonder I have felt exhausted for so long. How exciting to find my inner child, to learn how to be carefree, to have fun, to fill myself up so that those in my world get the best of me!

Tonight we went our for dinner with our close friends to the Red Lantern in Surry Hills, such a yummy place to go. If you haven’t been please go, it is truly amazing Vietnamese cuisine. Even with my struggling taste buds it was amazing.

All in all a great day, a long one, but a great one. Now me and my inner child are going to bed.

Summer Camp!

summer timeIt’s Summer time, and every summer our kids go to “Summer Camp.” This is 3-5 days when the kids go off and do crazy stuff and the grown ups get to have a summer break too.

I am feeling ok as the day begins, I am still sore where I had the mastectomy, I’m aching all over but the mouth ulcers are beginning to get less painful. We drop Sam to the bus for camp and he says that he fears he will starve while he’s away. Such a drama queen, my boy! I have packed him so many snacks that even if he ate nothing else he would survive.

I do the usual mum thing, “brush your teeth, use sunscreen, remember to drink plenty of water, Oh and have fun!” Sam hears “Blah Blah blah ….Fun” Typical parent teenager interaction really J

Marc and I go home and have a relatively easy day. I poddle about and have a rest in the arvo and then we have a date night which is exciting.

On the way into the city we got to Oxford street and go to a wig and hat shop to get some bamboo caps so that I am prepared when my hair starts to go. It’s so weird but the ladies are lovely and I pick a few different colours. I’m such a girl scout; I need to be prepared. But seriously, when is it a convenient time for your hair to fall out?

We decided to go to Gold Class and see “Walter Mitty.” We went to a little French restaurant for dinner and then on to the movies. What a great movie, so good to get out of my own head for a while and be in some ones else’s. It’s so nice to be doing “normal” things together, just spending time, and especially not talking about cancer.

Such a lovely day and I didn’t even need Endone tonight! Progress……

Meeting a fellow Warrior

warrior womanI slept well again –the difference being no Endone last night, a further improvement! I woke early as Marc is playing at church this morning, we were being silly mucking around and ended up laughing so hard we couldn’t do anything else for a good few minutes.

It was so good to have a good old belly laugh – man it is good for the soul. He leaves for church and I have a few sacred hours to myself in the house where it is quiet.   I cherish these moments when everyone else is asleep and I just get to sit and enjoy the stillness. It is one of my favourite times.

The church service was amazing and afterwards we had arranged to meet with another couple who are on a similar journey. The difference being, she was diagnosed a month before me, and because of her cancer being different she has had to have chemo before surgery.

It was so lovely meeting them both. I recognised her straight away as she had the cancer cap on. She looked weak but strong on the inside. We talked, I asked many questions like “why the chemo first?”

She explained that she wanted to preserve as much breast tissue as possible so she could potentially have a lumpectomy instead of a mastectomy. She is the only in her family to be diagnosed so has a very different view of breast cancer to me.

It was so lovely to speak with another woman who understand the fears, the concerns, the feelings of being so sick that blinking is too much. She encouraged me to rest as rest is healing and when you allow our body to heal you recover faster.   I call her my warrior woman friend.  She inspires me so much and she understands what it’s like.  The picture has been chosen strategically.  In all of the pictures available each of the women is really voluptuous, which no longer connects with me, so I picked this one.

An added bonus, our Husbands connected really well which was wonderful. There is so little support for the men standing with their women through this awful journey. So we plan to stay in touch, to resource and support each other. She gave me a contact for the cancer caps so if and when I decide to use them I can get some.

They looked funky on her and I am sure at least initially and in certain settings I will want to wear one. I am generally feeling a little better today, less pain, mouth ulcers still awful, still tired, digestion a little better but ovulation pain is really bad.

So if you are reading this and are on the journey too, find someone you can connect with, even if it’s online. Having someone who knows what you are going through makes such a difference.

NEWS FLASH!!

newsflashHi all,  after some recent feedback I thought it was critical to provide some clarity around this blog for you all.

I am writing this blog retrospectively, I am currently just under 12 months from when it all began mid November 2013.   The reason I am clarifying this for you all is that so many people have said to either myself or my Husabnd, “Gosh has Kylie started Chemo again?”

The answer is “No”, my chemo ended some 6 months ago however I am certainly still coping with the aftereffects of this horribly toxic stuff.  Things such as, lethargy, gastro issues, bone and joint pain, taste issues (taste buds still weird).  So apart from today, whenever you read a post it has been written retrospectively.  I needed to do this as the idea of writing as blog was not one that came about when I was diagnosed.

In fact, I was blessed with the fact that I had kept a journal.  This is the longest I have ever consecutively kept a journal and if there is anything I can encourage is for anyone going through a journey that has so much to offer – keep a journal!!

It is such a gift when you can look back and reflect on your journey with such detail.  Particularly, if your memory is compromised for whatever reason like mine has been.  Self reflection is such a powerful exercise to take part in.  If all we really are in control of lis ourselves and our thoughts  —-> actions then self reflection is a necessary part of our evolutionary joinery into better people.

I have always been so driven to take whatever learning has been thrust upon me.  I kinda think, if I have to go through something hard and crappy I may as well find some good in it.  Although it is weird to say this, much good has come from this experience.

I am learning that I am a “human being” not a “human doing.”  My output does not define me, I am strong in many ways, I can see the good in a very bad scenario, I have amazing friends and family that have stood with me, my family is phenomenal, my kids are resilient and have such big hearts, I know who I am in God so much more now.   I also know that I am never alone, He is always with me.

I also have a very large fire burning in my belly to change a few things in this world so that less women and families have to endure want we have over the past 12 months.  There will be positive change, I am determined.

So for all of you lovely and loyal supporters and readers out there, I am not currently going through chemo, I am doing well I am recovering from my last surgery which was about 5 weeks ago and things re going ok.  It is a long journey, it is a hard and unpredictable journey but I am very confident that I will continue to do well.  At the very least – I am learning a heck of a lot!!!

Thanks for all of your support and prayers, it is such a gift I cannot tell you how much it means.

 

 

 

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.

Yay! It’s Chemotherapy day!!! Part 3

broken heart3Did you know that the side effects from Chemotherapy can be worse than the actual disease it is treating? I know for me I am feeling at this present moment like I have been hit by a small truck, not yet a semi trailer but a small perhaps 3 tonne version.

We leave the Hospital and head for Westfield, which in hindsight, is not a great idea.  I have an invoice to take to Medicare to try and get some cash back. We have spent well over $50k so far on treatment and surgery so we need to keep on top of what we can recoup. With no insurance kicking in yet it is financially trying.

Just stop and think what would happen to you if tomorrow you were told you could work again and for an undefined time? Would you be prepared? This will be covered in depth in a future post but please take the time to consider this for your self.

I asked this of a lady recently how would she cope if she became sick and was not insured. She looked me in the eye and said “Oh but I don’t plan to get sick.” My response straight back at her was, “Neither did I!” Sadly I still don’t think she got it.

I get to Medicare which most of you know, is a very pleasant experience. I get my ticket find a seat and wait, and wait and wait. Finally, a young woman who appears to be perhaps 24 years old calls me up. She holds her hand out and drones at me, “How can I help,” however the tone was anything but helpful. I try to muster a smile whilst my stomach is fighting the toxin recently overtaking my system, my head is buzzing, my body buzzing too and a weird hot pain is raging all over.

I say “I have this invoice to claim on please.”  I hand her the invoice and she looks at it, scoffs and spits at me “This is not the right invoice I cannot help you” and then waves to the next person.  I am outraged, but the inner assault on my body prevents me from doing anything but skulk away.

Now, anyone who knows me knows this is not how I normally handle a situation like this. I would usually quite assertively stand up and say “Sorry but that is not helpful, please explain what the issue is here.”  I would then remain until it was resolved to my satisfaction as a tax paying Australian.  I walk slowly to find Marc with hot tears of anger and frustration welling up inside me, how dare she be so rude!

I find Marc and try to explain, he hugs me and says calmly, “We will sort it out love.”  He has all of my goodies from the chemist and then says, “So are we off to the Pet store?” I agree and say “If we get there and she is not in the window we will take that as a sign that she is not meant to be ours.”

We approach the pet store window where “our” little pup is meant to be, we look and all we can see is an empty glass enclosure. My heart tears open as it sinks in my chest…..

 

Yay! It’s Chemotherapy day!!! Part 1

ImageDid you know how toxic Chemotherapy is? Did you know that 9 out of 10 American Oncologists would refuse chemotherapy if they had cancer? That’s up to 91% — a huge percentage that clearly shines a light on the truth: chemotherapy kills. www.cureyourowncancer.org

I wake after a very broken sleep, and realise a sharp reality “Yay! It’s chemo day!!” I pack a bag of goodies; they tell you to take snacks, medication, questions and things to keep you busy. I took some healthy snacks, music, some books and a blanket so I was comfy.

On the way Marc shows me a picture of a puppy he saw in the pet store a few days ago, it is a mini pin (Miniature Pinscher or Doberman) just like our lovely old dog Benjamin. You don’t see them in pet stores very often. He captions the pic with “Please will you love me?” and sends it to the kids.

I think she (the pup) is gorgeous and immediately begin to want to get her and have her all for myself. I go into lengthy justifications as to why it would be a good idea as I will need company and someone/thing to love whilst recuperating, plus I have the time to train her. Yadda yadda – I’m sold…… Now to convince Marc.

We leave in the car towards a total unknown; the car ride is eerily quiet. I play one of my favourite songs by Kari Jobe called “Steady my Heart” with beautiful words about the challenges of life, and leaning onto our Almighty Comforter to get rest. She sings “I’m not gonna worry, I know that you’ve got me right inside the palm of your hand.”  I find my eyes welling up with the anxiety of today and the thankfulness I have that God is with me for every step.

We arrive and don’t wait for too long before our Oncology Nurse “Justin” takes us in to our armchair of destruction. Justin is really relaxed and lovely, he is very aware of how anxious we are and he did well to make us feel more comfortable. He explained everything, answering our enormous list of questions. We take some pictures of me with my new look, the ice gloves. This is to protect your fingernails from falling off due to the toxic effects of the treatment.

He inserts the Cannula and sets up the bag. He leaves me to relax and I begin to feel a headache coming on. I am trying not to imagine the toxin entering my body. My arm even begins to burn at the site of the cannula and up my arm.  I have been told to imagine it as healing light. However, I am struggling with this.  I feel fear erin to grip me.

Justin returns to put another bag up, I ask him what it is and he says, “Oh the treatment is about to start.” I’m am shocked and ask what has been entering my body already, he explains “ Only saline!!”

Oh my, the power of the mind! What a powerful lesson!  So as I am smacked between the eyes with my own over reaction I determine to settle in and get this first treatment done and done well. As the famous quote says : “Whether you think you can or you think you can’t you’re right.

Crucial conversations

goodbyeWhat 15 minutes has changed your life, what crucial conversation meant everything shifted? For me, a recent example was coming home from the hospital after having a routine scan to tell my Husband I have a lump in my breast.

I still remember the look on his face, scared but holding it together for my benefit. Why was this so scary for me? It was because my whole life I have lived under the shadow of breast cancer. My Mother was diagnosed at 39 years old when I was a new born. She has a mastectomy and went on Tamoxifen. A couple of years later when the Tamoxifen was stopped (as is usual with this treatment) she had car accident and they found a metastatic growth in her spine. She had radiation treatment.

A few years later, she was seeing her GP. She told her GP of a lump in the other breast, her GP talked it down and told her not too worry. Perhaps a missed opportunity for a crucial conversation or otherwise a crucial miss.

She persisted and a few months later found she had a second different, more aggressive cancer in her remaining breast. Again she had a mastectomy and began Tamoxifen for a third round. By the time this happened I was 17 and doing my HSC.

After this she slowly but surely developed metastases all over her body and fought the hard fight until she went to heaven in 2003. By this time the cancer was in her bones, liver, stomach and brain.

So I guess another opportunity for a crucial conversation was the last time I spoke to her. She was unconscious and had been for a couple of days. The Palliative care team had told us, any day now. I wanted so badly to be by her side when she passed but was called away on some urgent family business with my ex husband.

I wanted to ensure that she knew how I felt so I read to her what I was planning to say at her funeral. Some may say this is sad or macabre but I wanted her to know how I felt, not just for the rest of the world to know. I think so many times eulogies are filled with things our loved ones needed to know while alive.

So with lumps in my throat and tears streaming down my cheeks I read her the eulogy I had written. She squeezed my hand when I finished which was such a special thing for me, some acknowledgement. Another beautiful but painful crucial conversation albeit one way.

On the way back from my “emergency” I received a call to say she had passed away. I had missed her by 1 hour. I cried tears I thought were impossible to cry. I cursed my ex husband blaming him for pulling me away in another selfish act.

However in hindsight, this was how she wanted it. She had always said she did not wish to be a burden and wanted to be alone to die. I don’t think any of us understood this or believed it so we faithfully sat by her bedside hour after hour.

It was only when I was gone, one sister was in the bathroom and the other was called away to answer the door that she passed away. Then I thought, poor love, was just waiting for a peaceful moment to slip away.

Crucial conversations can occur anywhere and any time, ensure you are open and ready as you may only get one chance.

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