Bald Barren And Boobless

An honest and comical reflection of my journey through breast cancer

Month: July 2014

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.

 

A step closer to an answer

contemplation2

Saturday 16th November 2013

The day rolls around and I turn up for the ultrasounds. I have been dreading it yet I also want to have it over and done with.  I ask for a female technician because the pelvic ultrasound is internal and is what they call an “invasive test.” I am told there are no female staff today, awesome! Great start!

After pacing the floor for 20 minutes with a full bladder (another beautiful part of the pelvic ultrasound) a tall red haired man, with a friendly smile comes and gets me. He is really lovely, we chat and the whole process is quite ok.

 He tells me that I am ovulating at the time of the test and that each ovary is producing 5-6 eggs which is overkill.  I have always been known as an over achiever!  This confirms polycystic ovaries (that has previously been speculated)  and explains why each cycle I have bad pain for at least 3-4 days.

Next I am back in the waiting room.  About 30 minutes later, I am called for the mammograms.  I last had one at around 29.  It is best practise to begin to test 10 years before your Mothers diagnosis, I was told. The first time was really painful, I felt like my lung was being ripped out through my nipple and they could not read it because the tissue is so dense.  So at the time i felt it was a useless and painful experience not to be repeated too soon.  

Apparently dense tissue can be a bad sign for breast cancer. I only found this out recently. I am, not sure if it is because it makes the mammogram harder to read or if this is a predictor of possible breast cancer.

A lovely young woman does my mammogram and she has to redo it a few times. In my head I am thinking “wow they can’t read it again.” They ask me to wait, then call me back to do a slightly different mammogram. This one is a bigger squeeze over my nipple and I nearly hit the roof!

Then I wait, again!  They do the ultrasound on my breasts. I get the same lovely red head man again and we chat all the time. Then he goes quiet.  He has been a great conversationalist throughout the day but all of a sudden he loses the ability to speak.

I make a joke of it and he remains quiet. I get an eerie feeling. He is hovering over and over the same spot. He then says gently “I think you have just booked yourself a biopsy love.” I don’t feel too nervous it’s more like a weird confirmation. I go onto practical problem solving mode like I do in a potential crisis.

 I ask him who he would recommend as a good breast surgeon, that is, “if this was your wife who would you see?”  Without hesitation he says “Dr Peter Schwartz.” He gives me his details and explains the process of the biopsy.

I will need to see my GP first and then be booked in straight away.  He is really gentle but firm so I feel oddly safe and ok about it.  I get dressed and go to the waiting room to settle my account. The receptionist says that will be $400 odd dollars and the Radiographer comes out and says to her, “She’s not paying, I’d like you to bulk bill it please.” Then I get all teary and think “geez, I must be dying cause he won’t let me pay!”

 I drive home in shock really, thinking over and over, “I’ve got cancer,” “I’ve got cancer!” I walk into the kitchen and straight into my husband’s arms and say “babe they found a lump.”

 He is all cool and calm and says “look let’s not worry till we know more, what’s the next step, what do you need from me, what should we do?” He is always just so loving and supportive when I need it most, another gift for me straight from God.  At the time I am not even able to think about what i need. 

 I am walking around like a zombie, non comprehende…. He suggests we go for a drive to just get away and to be able to talk if we want and sit if we want. So we drive to Berrima and buy some of our favourite wine. Drown our sorrows hey?

 I call my sister Leonie and she is very upset but holds it together, and also says “let’s wait til we know more hey.” Apparently the majority of biopsies come back as being benign. I am booked into see the GP on Monday morning.

 I spend the rest of the weekend in a fog really.  I am numb but also fully awake. We decide not to tell the kids until we know what we are dealing with.  There’s nothing like the unknown to add to fear and anxiety.  I certainly don’t want my kids to feel like I do right now, particularly if everything is ok.

 So I have seriously entertained the possibility of having a cancer diagnosis, things have changed for me, and for my man forever.

A new perspective

Friday 8th November 2013

perspective-different-perspective

I saw the new GP today. She was very thorough and asked me many questions. I have a really strong family history with breast cancer with my Mum being diagnosed at 39 and my sister at 49, both have had double mastectomies. My Mum passed away at 69 after 30 years with cancer.

My experience with most GP’s has been one of slight panic when they hear my family history, as the patient it is extremely calming.  However, she is wonderful, she listens to me, she does not visibly panic and is upfront with me which I appreciate.

I am desperate for some answers, I have been struggling with low to no energy, headaches, pain all over my body, feeling like life is just too hard, waking after 8 hours of sleep still feeling exhausted, and I’ve lost my zest for life. Surely, this is not normal?

The doctor says “look something is not right so let’s test everything and also let’s get baseline screening done as this is a fresh start”. I’m anxious but relieved, I have been heard but what if we find something yucky? She organises, blood tests, urine tests, ultrasounds and mammogram. I leave feeling heard and bewildered. I’ve gone from feeling like a whiner to thinking “crap I feel really unhealthy and something might really be wrong with me.”

The first test is on Monday 11 November 2013, the liver and abdomen ultrasound. Thank God they are all good!. Blood tests next and I need to wait for the results.

The next tests on the agenda are the ever-popular pelvic ultrasound and mammograms booked for Saturday the 16th November. I really don’t want these done but I agreed to this process so I will do it.

It’s weird I have had a few mammograms in my past and they are painful and unhelpful as I have been told I have very dense breast tissue, so the images have traditionally been really hard to read. Paired with an ultrasound it is easier to read but each plays a different role, in diagnosing any issues.

I have also put them off, as they are painful, feel useless and I was frightened of the outcomes so you know how you just put things off that little bit longer. Like hear me out, I’ve never had a reason to go and have a mammogram, other than family history. I’ve never felt a weird lump (my breasts always felt lumpy) and I’ve never had any changes, or any of the other symptoms of breast cancer. Just that gnawing possibility in my mind, what if?

Now I wait for the ultrasounds and mammogram day, a whole week to contemplate….

The journey begins

change-wordle

Monday 4th November 2013

So for the last 6-9 months I have been feeling like crap! I have had a really stressful year, have been waking feeling completely exhausted and I am always tired. My energy is low, everything is too hard, I get daily headaches, weird aches and pains and just feel like crap. I read an article on a plane recently that spoke about hypothyroidism so I went to see a naturopath on the 29.10.13. She said that I do have an under active thyroid so I need some specific tests to be ordered by my GP.

Today I saw my GP, I have spoken to her about how I feel before and she has always spoken about stress management.  I teach stress management so I am not saying I have nothing to learn but this is just too hard.  I simply don’t believe it is all due to stress.  However, I do feel like a whinger after speaking with my GP.  The way she looks at me when i reel off all of my symptoms.  I almost feel like minimising things so she just looks at me in a kinder way.

My GP appears to have her nose out of joint when I ask her for the blood tests requested by the Naturopath.  She says “but your thyroid levels are normal”.   I say “this was tested 12 months ago, “.   I also explain that this is not unusual with hypothyroidism which it is why it is commonly missed – she likes this even less and says “I will test your cholesterol”….. how helpful.  I even said I would pay for the tests and she refused to order them! I leave feeling deflated, unheard and like a hypochondriac.  I’m sure like thousands of other women who go to their Doctor with a group of weird symptoms and are told to “go home and rest”, or “take some timeout for yourself lovey”.

I call a girlfriend who is a nutritionist and she says “hey go to this clinic in the city, these guys work alongside naturopaths”, She also added, “what happened here is not good enough, you should be able to speak openly and honestly with your GP”.  I feel some what  empowered and make the call.  I have an appointment for the 8.11.13.  Hopefully then I will begin to get some answers.

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!