Bald Barren And Boobless

An honest and comical reflection of my journey through breast cancer

Tag: family history of cancer (page 2 of 2)

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.

Beyond festivities of 2013 toward overwhelm

overwhelmSo 2013 is my first Christmas with Cancer personally. Due to my family history I have had cancer present and many Christmas celebrations just not in my body. I am trying to keep busy so as to distract myself I think.

It is such a fine line to walk when you need help as you are recovering, but are fiercely independent. It also gets very complicated when your family are so used to you just doing things that they don’t readily offer to help. This then requires me to ask! Something I do not do very well. It’s not that they wont help it just doesn’t occur to them, I suppose I have trained them well (not!).

Christmas comes and goes, it is pleasant and quiet. After Christmas we head up to the Hunter to see more of my family and to stay with some lovely close friends. We have a few days grace before Chemo starts. Something that is in my mind and I try desperately to block it out.

There are so many things weighing on my mind. Firstly, finances. We have an insurance policy in place but the analysis of my eligibility is taking a very long time. In the interim, I am not working and we are spending so much on treatment. Even with private cover we are at least tens of thousands out of pocket so far. That is also because I am doing the two-shoe shuffle using both medical and complimentary medicine. So between acupuncture, supplements, medicine, doctors appointments and surgery gaps it all adds up.

Other things weighing on my mind are the effects of Chemotherapy, what will it be like? I really have not idea what to expect here, how unwell will I be? Once I lose my hair I will no longer be able to go incognito, the game is up! How will my kids cope with a bald mum picking them up from school?

What about my mortality?  Although I do feel that I will get through this and be healed, I am still human and I do have doubts.  What if the cancer comes back?  What would I do?  What would my family do?  Am I ready for what that means?

The future is also weighing on my mind. Even if the cancer does not come back int he near future, how long will I feel like I do? So sore, fragile, emotionally knackered and physically tired. In some of the reading I’ve done some women never get over that. Will my capacity be different? Will I cope with full time crazy hours like I used to do? If not, how will I build a business that I have on my heart to build. I have a big message and a desire to share it, if anything that has only gotten stronger so things will need to change.

How is my family doing? They all seem ok but I know this dance you don’t want to upset the sick one so you keep it all inside. I did it my self for years with my Mum. I am not worried about my Husband we have been really open from the very start, almost offensively open. In fact, on the day I found out I had cancer I gave him an out. I said, “I don’t expect you to stay if you are not up for it.” Poor love was so offended that I didn’t believe in him. It was not that at all; more that I didn’t want to shackle him.

I also need to somehow keep the door open for my boy Samuel (or young man). I know he is scared that he may not have his Mum around and that I am his biggest fan, advocate, protector etc. Yes we have a wonderful blended family but the thought of losing me really frightens him. Yet as a big almost teenager he is trying to be tough and act as if all is well.

Don’t get me wrong I don’t want my family to be solemn and walk about sulking all day because of this, I just want us to be able to be real when we need to be. So I feel like it is my responsibility to create that environment. Now I just need to work out how……..

Something’s Gotta Give

breaking-point

Friday 29th November

So it is the day after my mastectomy.  I am sore, my chest is hard to see because of the dressing but the place where my right breast should be is a concave weird place. You think that without a breast you will look like a man, but you look hollow, almost dug out. It is weird to look at myself, hollow one sided chest and black eye, what a sight!!

Marc brings Samuel into see me today, he has to drag him in as he is frightened of what he may see. He is surprised to see that I still look like his Mum. Bad hair, drawn face but still his Mum. They need to get off to their days of school and work  so they leave me to rest.

I decide to write to the GP who would not support me in my search for answers. I decide that something needs to be said. I wonder how many others have been stifled or not pursued treatment after such a negative response. I could have so easily not pursued things with another Doctor. After all what if I was just being a whiner?   Despite feeling so bad sometimes you lie to yourself and tell yourself it’s not worth pushing, after all it is probably nothing, you just need to toughen up princess.

Have you ever discounted yourself like that? I know I have for a very long time. I think it’s part of the process that we go through at times when life gets busy and we start to lose ourselves. Particularly, those of us who have many roles. Here I am Kylie the Mum, Wife, Step mum, Business owner x 2, Sister, Friend, Colleague. I know most women who have had children can begin to lose their identity. I think its because we just get used to putting everyone else’s needs before our own. I mean in our house even the pets get fed before I do.

But this will need to change, I am realising that whilst there is a big part of this situation for me that is genetic, there is also a big part that relates to lifestyle I am sure. I have been putting myself last for a long time, not taking time for my self or care of myself. The funny thing is that no one asked me, or even expected me to, I just did it. Like being a good Mum and Wife means you come last.  Where does that message come from?

Again, my kids or Husband never said this to me, I just allowed it to happen. I passively stood by and decided that what I wanted or needed didn’t matter. How did I end up here?

It made me think back to earlier this year when I was asked by a Counsellor “what makes you happy?” When she asked me I sat there dumb founded thinking I have no idea, I burst into tears because it hit me just how sad that was. The worse thing is I am not the only loser here, so is anyone close to me. They don’t get the best of me either, just the chewed up spat out version.

So laying in a hospital bed, I have much time to think about my future and to think about how differently I am going to live my life. I only get one crack, I have much to offer and much more I wish to achieve in this short adventure on planet earth.

I decide I want to do life laughing, running, having a ball rather than depressed, run down and dragging my feet. So things will change, I will need to prioritise both my physical and emotional health. In doing this I will be able to be there for those special people in my world.

How this change is going to happen is another story and I am sure will be a long and evolving process.

 

 

 

Decisions to be made

tough decisionMonday the 25th November 2013

 

We see the Doctor again, he says “the second lump in the right is cancer, the left is benign”. He then says “You need a mastectomy, and I can do it on Friday”.

In my head I am saying to him, as if you are touching me dude! You can’t even remember my name how do I know you will remove the correct breast! I actually say, “I want a second opinion and will see another breast surgeon”. He mumbles uncomfortably, “yes sure you can do that, it is your right, I am sure he will say the same things as I just have.”

I call the Doctor who was recommended to me by the radiologist. He is back from holidays this very day; they agree to squeeze me in this Wednesday as in the day after tomorrow! – Thank you God. At least there is minimal wait time this time around. I don’t realise until much later how unusual this was. This doctor has a waiting list of more than 3 weeks!!

We begin making contact with everyone we need to tell. This is so taxing. Repeating the same story, dealing with the shock and emotion of the other person, making sure they are ok with your cancer diagnosis, it takes a real toll.

We get practical and do some group text messages, which really hit home for some of our friends. They respond with shock, calling to say “how can you tell us by text?” At the time this was really hard however reflecting back I am sure this was just their shock speaking. Practically we seriously couldn’t tell everyone we needed or wanted to tell.

We know more now so it is decided that we need to tell the kids. For those who don’t know we have a blended family. Marc has two amazing kids Josh, 20 and Monica now 18. I have the wonderful Samuel who is 13. Moni and Sam live with us in Sydney, Joshua lives in Adelaide closer to his Mum. Marc tells his kids and we tell Samuel. I decided to be really open as I remember what it was like for me as a kid not knowing the full story with my Mums health crisis. When you don’t know you fill in the blanks and that is a scary place.

I used the word cancer, and encouraged him to ask questions. His first question was, “will you lose your hair?” I said “maybe, maybe not, that still needs to be determined, but I am having surgery to remove one breast first.” Samuel is such a deep thinker, he took his time and then said “well Mum, if you lose your hair, I will get you a really cool beanie.”  What a sweet heart!

I watched him like a hawk to ensure he was ok. I encouraged him to ask me anything he wanted too promising that no question was silly or too hard. I also shared with him that I really believed that I would be ok, that I felt that God would look after me. I didn’t talk much with Moni about what was going on, she seemed to internalize it and to be honest at the time this happened we had not been in a great place for a long time.

On Wednesday 27th November we see the Doctor for a second opinion. He agrees mastectomy is the best course of action and can do it next week. I say “the other Doctor said he can do it Friday” he says, “let me check, oh I can do it tomorrow.”

Holy crap that was quick! He explains the process and says that he will also do a sentinel node biopsy to determine if the cancer has spread to the lymph nodes because that will change treatment options. I explain that based on my family history I want both breasts removed and now is preferable.

He listened but said “Look my first priority is to ensure we get the cancer under control, until we get in and do the pathology we don’t know what we are dealing with. We need to control cancer first, then discuss the other mastectomy, but I wouldn’t necessarily agree that that is your best course of action”.

I appreciated his honesty and candor and agreed that first priority was the cancer. I also needed to know that he would listen to my perspective, and I felt he would. So we agreed to go ahead and left with all of the paperwork.

We leave and call HCF, do you know until this point we didn’t even know if we were covered. Even with cover, upfront payment was $2000 just for the surgeon. I am nervously on the phone with a consultant and yes we are covered – thank God!

Marc and I then book in for surgery tomorrow and then go and get some new PJ’s for hospital. I’m going to need stretchy lose tops that allow good access to my chest.

I decide to make tonight a celebration so we have a “bye-bye booby” cake that night. I make a cake to represent my right breast. I want tonight to be a celebration not a sad event. So we crack open the champers, we laugh at my ridiculous rendition of a boob cake, it really doesn’t look like a boob. Any caterers or creative cake makers out there, this may be an opportunity for you?

What a day! What a week, and tomorrow the real fun begins.

Still we wait

waiting w clock

Monday the 18th of November 2013

I saw my new GP, she says “well we have the blood test and you have Hashimoto’s of the thyroid.”  This is an autoimmune disease where your own body attacks the thyroid gland making it function poorly – OMG I wasn’t imagining it!  So my lethargy, pain, headaches and other weird symptoms can be attributed to my poor thyroid functioning.  I feel so validated

She also says, “You have 3 questionable spots in your breast, 2 on the right and one on the left, you need a biopsy today of the largest lump and see breast surgeon regarding the other two.”  Holy crap!

She gets on the phone and tries to book me in for a biopsy.  I ask to go to the original place where I had the mammograms.  They tell the Doctor that they are flat out and can’t guarantee to see me for hours, she tries her best but I agree to go back and wait.  What else am I going to do really?

Marc and I go back to radiology and am told to wait until they can do the biopsy, I am treated very badly by reception.  The lady is so rude and angry telling me they have no appointments, “I say I am happy to wait,” she reads the referral sees the word malignancy and then she becomes nice.  Weird how one word changes people behaviour huh?

The biopsy was done after only an hour wait.  The technician and the Doctor were really lovely.  They say I should know pathology in 24 hours.  They are putting a rush on the results, thats great but it really scares me.

A biopsy is a weird experience. They numb the tissue but it is not gentle at all.  They use a ripping great needle and shove it deep into the tissue to get a core sample of the questionable area.  Today they only do the one on the right, the largest one.   I am to see the breast surgeon tomorrow at 9am.  He will decide if there is any more biopsies needed and I will also know the results if this biopsy then.

Needless to say it is an anxious night for Marc and I, contemplating the future. We talk about things we have not been forced to consider before, its so weird how you go to a place that you cannot come back from.  You realise on one swift moment you are mortal, you are not above death, you have a finite time here and you realise all of the things you have not done that you wish you had or that you need to get done.

I also became really sad about my son Sam, I felt every one else in my world would be ok but he is so young and really relies on his “Mummy.” I am his biggest fan and his biggest advocate, what would happen if I was not here tomorrow, who would go into bat for him, who would he ask those big questions of?

I settle in and try to sleep, but sleep is not my friend tonight.

 

Welcome

 

Mum, Dad & my sisters and me.

Mum, Dad with my sisters and me (far left) Christmas 1997.

Welcome!  I am writing this blog with a specific intent.  If you are a person experiencing breast cancer or know someone who is then my aim is to share information to help you along through this journey.

I was diagnosed almost 8 months ago and am still in the midst of active treatment.  My experiences have been a combination of amazing, wonderful, heartbreaking, physically intolerable and disappointing.

I am sharing my story in an honest, authentic and tell all manner so that you can glean from my experience what ay help you or your loved one.  I have read so many stories my self and have found that each one has helped me in some way.  Whether it be a symptom of chemo that helps me to feel normal, a tip to cope with treatment, an idea on what to ask your Doctors, or how to cope in general, I will share all that I have learned and experienced along this road.

My journey with breast cancer began 42 years ago when I was born.  My Mum was diagnosed at 39 when I was a newborn breast feeding baby.  She had a mastectomy, and carried on with her life.  When I was about 7, she was in a car accident that ended up saving her life.  Whilst Xrays were done to determine the extent of a suspected back injury they found extensive bone cancer in her spine.

Treatment recommenced.  When I was 16, Mum found another lump in her remaining breast.  Her GP told her not to worry!  Several months later after she persisted in getting this assessed a second breast cancer was found and the second mastectomy was performed.  Mum had radiation and was taking Tamoxifen as the tumours were hormone driven.  She had already undergone a hysterectomy but had her ovaries removed also to protect her from the devastating effect of her hormones.

From then on, Mums bone cancer just kept on spreading until when I was in my twenties and spots were found on her liver and lungs.  I remember a time when mum hurt her hip.  She was such a stoic and strong woman she kept going but we all knew she was in pain.  She told her doctor and said that she thought she had broken her hip.  The doctor indignantly responded saying, “Oh no if you had broken your hip there is no way you would be walking.”

Mum persisted and eventually her hip was X-rayed a few weeks later.  She indeed had a fractured hip and her hip was riddled with cancer.  She ended up with 2 hip replacements to try and allow her to stay mobile.

On my 31st birthday, I was visiting with my son who was 18 months old when mum had a minor fall (It was more like a bump really).  She was in excruciating pain immediately and we called the ambulance.  She had snapped her thigh bone in two.  Once again she was told the cancer had weakened the bone.  Mum never walked again.  She slowly succumb as the cancer spread to her brain.  She passed away after a long 32 year battle on the 8th of August 2004.

When as a family of 4 daughters we reflected on Mums journey we noted how much she had to push for recognition and treatment.  She would often tell her GP that she was concerned and was often told not to worry.  She struggled with the idea that she was perceived and a whiner, so sometimes it took time to have the diagnosis confirmed and treatment commenced.  Mum had radiation surgery and hormone treatment to deal with the cancer.

Mum was put on “Tamoxifen” each time she was diagnosed and was taken off it after a few years, which was the standard treatment protocol at the time.  We noticed that within months of the Tamoxifen being stopped Mum would begin to experience weird symptoms and begin to push for recognition from her Doctor.  The result was us as a group of daughters being petrified of both the disease and the treatment, as we helplessly watched our Mum get worse and worse.

Mum had one breast reconstructed and it was more like a butcher job than a reconstruction, poor love.  She had so many scars from the surgeries, drains, hip replacements, hysterectomy and other medical procedures over a life time of health battles.  She looked like a patchwork human,

When Mum was no longer able to live independently she moved in with my sister who lived closest to her.  It made practical sense at the time as the two lived in the same country town, with the rest of use living away in both Sydney and Adelaide.

We agreed as a family we would care for Mum at home as she dreaded the idea of being sent to and aged care facility.  We tried to share the burden amongst the 4 of us, but it really fell mostly on my second sister.  She is very similar in temperament to my lovely mum and the two of them clashed.  This was made more difficult as Mum got more unwell she became more frustrated and bitter.  Mum lived for more than a year with my sister.  This was such a hard time for everyone particularly Mum and my sister.

The more dependent Mum needed to be, the angrier she became and we were all subject to her wrath at times.  We all understood why she was so frustrated; she had been the carer of everyone for so long, it was how she showed her love.  She felt so useless and hated that she felt like a burden to her family.  When Mum passed it was incredibly heartbreaking on so many levels and also a relief as she suffered so much.  She died at my sisters home as she wished on the 8th of August 2004.

It was such a weird experience as she had been diagnosed with cancer so many times and fought it we didn’t think it would take her.  So when it finally did take her life we were all shell shocked.

Within a year my sister 49, who had cared for her found a lump in her breast while doing a self exam one day.  She had it checked out and it was also cancer – we could not believe it!  It too was hormone driven and she had a mastectomy.  She was recommended a similar regime to Mum.   However, my sister did not want to follow the same path as mum so with such courage she said “no” to chemotherapy, radiation and tamoxifen and she decided to treat her cancer through complimentary therapies and nutrition.

My sister struggled more than she let us know.  She was told by Doctors and fellow patients that she was crazy or stupid or reckless for not pursuing medical treatment.  She questioned her decision but knew in her soul that it was right for her.

About 18 months later precancerous changes were identified in her remaining breast.  She also struggle with the idea and fear that the cancer would come back, along with the unevenness of having only one breast that she had the other breast removed.   That was 9 years ago without a recurrence.  She has had a few slip ups with caring for herself, particularly when things get really stressful.  But she has done amazingly well.

In November last year through a screening mammogram I was also diagnosed with breast cancer, I was 41.  I had 2 tumours on my right breast that were also hormone driven.  During surgery it was found that the cancer had travelled to my lymph so chemotherapy was recommended.

Unlike my sister I decided to take a combined approach with both medicine and complimentary medicine.  With the full support of my entire family I too decided to have the second breast removed instead of waiting for my body to betray me.

One thing I have learned is that each person’s journey is so personal and individual.  It is impossible to know how you will respond to the diagnosis of cancer until you are in that seat and you are being told “you have cancer.”

In that moment your life changes forever, things get really clear and really simple in an instant.  You realise how much time you have wasted on the unimportant.

So my sincere intention is to share my experiences, what I have learned, what worked for me and what didn’t.  I cope with humour so beware, some of the things my husband and I have laughed at may shock you, but you wither laugh or cry hey?

So stay tuned, read my blogs as they are posted, stay well, laugh lots and live in the moment – after all it is all we have!

Newer posts »