Cycle of Life

Thank goodness for six monthly scans...

On the road to get Ebus with Henry for company

For the first time in 18 months I was positive that my scans would come back clear again, just like all the other times, but alas not to be.  My GP phoned and says "I will ring you tonight" - ah no, you will tell me now thanks, and so he did.

My scans showed I have abnormal lymph nodes basically in behind my breast bone about 3" in.  First step - let's see the oncologist.

So off we went two days later to have my oncologist swoon in towards me with his office chair and with his blue steely eyes, he painted the picture.  

-  Yes, he thought the scans showed abnormal lymph nodes, different to six months ago.  

-  No, we can't operate. 

-  Yes let's do blood tests today while at Waikato Hospital which will confirm his diagnosis of cancer in the lymph nodes.

Blood tests confirmed the next day so I go for an Ebus biopsy to check if the cancer had hormonal components, ie breast cancer recurrence, or if a new cancer.  If hormonal, then back on hormone meds for 10 weeks, then a scan and see if the lymph nodes have stayed the same or reduced; if so, good sign and we carry on with that regime.  If not hormonal or if not responding to hormonal meds, then chemotherapy (no radiation).

Remember people, I have been here before, so for some weird reason I am not overawed as yet.  Sure, I am surprised it has returned and maybe I am experiencing denial, fear, acceptance.

You know what though, I hear silence which I take as disbelief on your part.  I am so grateful for lots of encouraging and beautiful comments and sentiments when I told you.  But the silence is deafening and I know why. Because I know how sad you are for me and I know you don't know what to say, and I know that you want to say 'be positive' 100 times, but even you are now starting to doubt and who can blame you when it comes back for the third year in a row.  I know that it breaks some of your fortitude and resolve in believing in my physical body being able to beat this.  If all I need is hormonal meds, then this will be much easier on me physically.  If I go to chemo, then I will be as strong as I can,  and the days that I am not, then I will falter, but I will always do my best to bounce back up.  Let's not jump too far ahead though.  This could be an easier road than perhaps first thought, let's pray so.

When I was diagnosed in 2014, I remember Wayne saying at one point "what has really changed from one day to the next".  I remember declaring loudly "You don't know what it's like, you aren't me".  Yet in his mind one day I didn't know I had cancer, the next I did, but I was still me.  I couldn't grasp that then, but I do now.  Nothing has changed except I know it's there.  If I had gone another year without scans and didn't show any obvious ailments, then I would be none the wiser until a more serious event reared its head I suspect.

So I say:

- thank goodness for the scans that have captured a picture of some abnormal lymph nodes

- thank goodness there is modern medicine

- thank goodness every day Pharmac is getting closer to releasing meds that can work more effectively in my lifetime. (To be told I could have one med that would work but it costs $10k a month - yeah well, that ain't going to happen.)

Admittedly today I am a bit sad and disappointed, and a bit angry that it's happening again.  Really?  Three times?  C'mon!!  I am so gutted for Wayne and Luke, and my family to have to endure this again.  I see what it does and I am so so sorry for them.

I am waiting a lot more patiently than the previous two times for a phone call to undergo the Ebus procedure.  Apparently 'Mr Wong is going to wing me'...Wayne is already getting his 'abscess makes the fart go Honda' joke ready for Mr Wong.  Heaven help me.

Thanks for being my sounding board.😍

Missing You Already

26/10/2015

So one week into the lowering of neuropathy meds and I have to say my head feels clearer and my legs not so heavy, but the neuropathy is having a party at night time when I'm in bed.  Horrible foot cramps where I have to get out of bed 3-4 times at night to unlock distorted feet.  Hence I bought a foot spa today and seeing if that can loosen up the tootsies.  So one drug to go and see what happens then.

I came across this article during the week.  I have edited it to what is relevant for me right now...

"But when treatment is over? Well, life gets back to normal. Right?

Hmm … not so fast. It’s just not that easy. That’s what we forget to tell patients. Getting back to normal, getting on with life, is harder than everyone expects.

Picking up the pieces of your life before cancer – before chemotherapy or radiation wreaked havoc on the body and soul – takes much longer than one might expect. With the end of treatment comes an upwelling of fear of recurrence, fear that because active treatment has stopped, the cancer will be able to grow again. There is fear surrounding each scan and each blood draw. Anxiety swells before each oncology visit.

We might have forgotten to tell you that this is all normal. It’s an expected part of the recovery process. The fatigue from chemotherapy will get better over time. The hair will grow back. The fear of recurrence will subside with the passing of the months.

Another thing that we may have forgotten to tell you? You will be able to get on with your life again after cancer treatment. You’ll probably be a changed person after your experience, but you’ll get back to normal. If not the old normal then for sure a new one. Your life will resume, despite cancer, beyond cancer.

Just be sure to rally the support during this time. You still need it".

As was apt to do, the movie I saw last night "Missing You Already" got me thinking.  The hardest thing for me to watch was as Milly died, her husband was lying with her and his heartache was so raw.  I realised then that this is just what Wayne would be like and it broke my heart to know the pain he would be in.  He doesn't deserve to be a broken man.  Hopefully it's all a long way off.  Today I feel like it is

I have always been a people watcher and created Luke into one as well.  I was always making up stories about things I would see and say to Luke - look Luke, suspicious. Drug deal going down - and that was when he was a child!  He is an avid CI channel watcher so must have peeked his interest.

When I watch children now, I just see the gift they are.  One of our young mum's from work is just relishing motherhood and she is showing me again how to enjoy and make memories with loved ones.  I see her giving time to her son and that got me having some regrets.

I regret now that I had not spent more time and had more adventures with Luke when he was pre school age. I wish I had helped him explore more and look for adventures. I wish I had stopped doing the household chores, trying to keep myself busy, and spent time with my son showing him simple little joys.  I guess that's what grandparents do so well.  But thank goodness Wayne came along when Luke was five and introduced him to all sorts of craziness in 'Wayne's World'.

I know of another two ladies diagnosed this week...time to examine those breasts again, people.  Cancer does not discriminate.  Be aware of body changes and, if in doubt, take action.

N.E.D.

09/09/2015

"No evidence of distal metastases" - that's what the report says.

So let me tell you what it's been like living the last six months in my world - I thought I was dying. Whether the oncologist was right in telling me, in his expert opinion, the cancer would be back within six months was right or wrong, that's debatable.  For the most part though, I wanted to know. And he was predicting by my past results so I understand where he was coming from.  In hindsight, 3 hours after the news today, I'm glad he did because I have learnt a lot about myself in the process.

So the oncology team changed the hormone meds to Tamoxofin and I started that journey of relying on a medication to keep me alive.  And it's done its job.  No changing my diet, exercising more, positive thinking or praying hard out (though I know I have been lifted up and supported by so many who didn't give up on me when I was too spiritually exhausted to go there).  No, I left it up to good old fashioned medication.  But all the time I thought in the back of my mind I was dying.  So I put on the brave face; I kept that stiff upper lift for all appearances until I was in the confines of my own home.  No one will see the "scared Andrea".

Today, when I got the report saying no evidence of cancer, I honestly couldn't believe it.  I was expecting a call to have an MRI.  So I went into shock - physically, I had a meltdown.  You would think I would be jumping for joy and smiles and celebrations.  Um no, I went into meltdown mode.  I cried on my colleague's shoulder, I cried on my son's shoulder and then cried some more and then slept my grief off.  See if you can understand it this way...

You have been sentenced to death and you are on Death Row and then your lawyer appeals and you get a reprieve while the appeal is heard. This is me today.  This the only way I can explain how I felt today, right there and then I had been given "a reprieve".

My body will still struggle with the meds side effects and fatigue.  It will still be mending itself for the next 18 months, they say, from the operation and treatment.  But I will now embrace this without the thought that my body is giving up.  It hasn't been giving up; it's been fighting to live and I owe it that much to get my mind on the same wavelength.

So I will now do cartwheels and hand stands (and well God damn it, if it was summer a certain someone and I would be skinny dipping).  In fact I might just walk to the shop and buy a bottle of Kim Crawford Pinot Gris.

Thank you so much for taking the time to read my story.  I know it isn't always easy reading but I'm not big on denial. If I can help someone else through my words, then that gives me purpose.  

Thank you to all of those who have not given up on me.  It is honestly really hard listening to people say "You'll be fine" when you are living it, but to those of you who said it...you were right!

I'm now going to make plans for a holiday; one with no cancer looming over me.  It's been a long time coming.

A Year On

8/8/2015

This photo popped up on my Facebook timeline yesterday to remind me where I was this time last year.  I took one look at that photo and I sighed (and cried inside) because I look at that photo and think that I looked so much better then, which is silliness because I was in the thick of chemo treatment.  I see light in my eyes, a smile, colour,; I see vibrancy, I was in control of this.

But a year on I think I look worse today than this photo.  I feel my heart is heavy.  Have I commenced another stage in the grieving process?

I'm trying to work out if I fit the mould of 'stages of grief'.  Researching them today, I am pretty confident I have experienced all these, but not necessarily in this order:

- denial

- anger

- bargaining

- sadness

- acceptance

'Sadness' seems to be ticking the box (definition:  Confronting cancer and the losses it entails understandably leads to great sadness. You may have trouble sleeping and concentrating, you may lack your usual energy, or you may find yourself crying unexpectedly. These are normal reactions, but will you ever climb out of your darkness? Speaking with a professional counselor or participating in a support group can help.). 

To be re-diagnosed in February and a probable recurrence sentence of 6 months placed on my shoulders, has hit me hard, harder than many will realise.  I am literally still dragging my body around, knowing that it needs to heal, that it is still early days, and how I must learn to to listen to my body and remember to use my voice when I can't go on anymore.

I wish I could draw, because my picture would be of my body, side on, with a waterfall cascading from my chest inwards and tumbling down to a massive pool. It is constantly flowing at the moment.  Crying is good, I am told, gets rid of the toxins apparently.  Well if cancer is a toxin then it must be gone with the tears I have shed.  Soon, very soon, the tears must dry up surely.  

So it could be time to talk to a professional again, even if I feel like I am repeating myself.

On a brighter note, I heard on the radio today that it's three weeks till the end of winter!  Roll on sunshine and bring the heat, as there is a lake/ocean just waiting for this One Eyed Minion to dive into.

Freak Out

20/07/2015

Today I had a follow up three monthly appointment with my surgeon.  I made the comment that I seem to be getting cleavage from my left breast (which is no more) and he had a look.  Warning, warning, warning bells!  So in one sentence my morning  turned upside down - "I think we should biopsy that lump".

Off I go to Lakes Radiology for an ultra sound with the potential for a biopsy. I saw the same consultant who did my January scan and he recognised me. I told him, "tell me if you see anything, I want to know". Thankfully it was decided I didn't need the biopsy as he could see nothing sinister in the scans.  He asked what else he could do for me and I said "please scan my right breast for peace of mind" - and he did.

Now I thought I would be okay with all that happened this morning.  I had Luke with me in support and I'm so glad he was there.  We were able to go through the raft of emotions together and the 'what ifs' in a matter of two hours.

But I'm not okay really because once again I went into panic mode, my stomach was flipping, I went into the 'I will have to give up work if I have more chemo', etc etc. If Luke hadn't been there I probably would have had a melt down but I had to be brave for him.  

I don't want to have a melt down but I am feeling on edge.  I am so scared to write this blog for what others will think of me and my weakness.  I know how I should be and I know how others want me to be, and I know so many of you will have words of wisdom, yet my brain is playing a different tune.  I am in awe watching my fellow cancer mates get on with their lives, how stoic they are and the joy I see in them.  I have claimed back "joy" and that is my new daily journal entry right now.  

But it hasn't stopped me freaking out.

Yes I saw the trauma psychologist and that helped heaps.  But today I have gone into the dark hole all because of a few words.

I haven't written a blog for a long time because medically speaking I am where I should be in recovery.  Tamoxifen meds is a bitch of a drug, but if it is keeping the cancer at bay, then I need to take it.  I asked if I could take a break now and then and I was told no, never.  Shame.

Mentally speaking this is all of a challenge for me.  Some days I rise to the challenge, other days I don't.  So when reminders of cancer come knocking, like 

- getting dressed each morning and thinking I look like the One-Eyed Minion

- buying a silky chamise because my remaining boob heads East and my tops all go with it so trying to find a solution (other than a pin)

- walking with a cane in town because I am so unstable and yet I look perfectly alright

- the doctor keeping an extra special eye on me and sending me for tests

I am struggling to rise to the challenge.

When I think back to last year, that was physically demanding and yet my body coped.  This year, my mind is my illness and learning how to put a bandaid on it without it still 'bleeding' is Wayne and my challenge.  I say Wayne's too as he sees the real me that I don't want the rest of the world to see.

So not much joy in this blog, but I'm telling it like it is.  Cancer is not just chemo, radiation and meds.  It is mentally and emotionally getting through the trauma to body and mind, it is learning how to view and work with a physically changed body, and how to face the challenges of the mind games.  All incredibly powerful individually and yet put it all together and deal with it all at the same time, well I am not as strong as others, and that's okay, I'm wisely told.  I apologise for letting the mask down, but this is me - raw and bleeding, crying and smiling, joyful and resentful, grateful and alone, anxious and calm, peaceful and hostile...so many emotions to ride out.

Under Presure

16/3/2015

It's important on this cancer road for me to process what I have been told by the medical people about my future prognosis and how to make it fit into my life today to somewhere I am comfortable with and to keep moving forward.  It's not an easy process and I don't know if this is just the way I deal with it or if others with cancer have done the same.  But for me it is a process.

When I was sitting in the consult room and they were telling me the good and the not so good, I came away feeling like I had all this information about myself but couldn't quite believe they were talking about me. I have found it is much better to go to a consult with another person because once I have got fixated on a bad piece of news, I tend to only pick up snippets of the rest of the consult.  Thankfully I haven't had to do this alone many times.

I then had to pass this information on to loved ones, without being the bearer of doom and gloom, but of hope and possibilities.  

I then told my Facebook friends.  The feedback was overwhelming and uplifting to say the least.  As I have said before, writing is cathartic for me, and it is with every good intention that I will be able to enlighten others to the realities of an experience with cancer; others won't have the same thoughts or experience, and that is why I stress this is just my take on this whole drama that has unfolded over the last 15 months - yes, 15 months. I'm can't believe that this has consumed us for that long.

And it is a drama; the body psychologically and chemically waits for the next diagnosis and it goes into overdrive with adrenalin in how to deal with it, sometimes making the picture worse than what it is; sometimes not understanding that it is actually worse than what it is.  

While I was at the beach, I had time to think and process.  Some would say keep busy, then you don't think, and that has worked in the past, but right now I'm physically tired; I don't have the 'get up and go' to busy myself through this.  

What I now realise is I am feeling intense internal pressure.  My head feels like it wants to burst. So instead of downing another Panadol, I tried to work out what was going on and instead I drew a mind map and came up with this list.  I must add no one has put this pressure on me, but myself.  For example:

I feel pressured to stay alive

I feel pressured to be a wife/lover

I feel pressured to be the mum who is always there to nurture

I feel pressured to protect my loved ones around me

I feel pressured to be at work and perform to my high standard

I feel pressured to eat right

I feel pressured to provide comfort

I feel pressured to put on a brave face and keep on smiling come what may

If I don't, I will have failed and failing is not good.  I have failed before and have not enjoyed the fallout.

Of course, no one wants to see my mask when it drops to the floor.  No one else wants to hear me cry uncontrollably in my husband's arms at 3am.  No one wants to recognise the anguish I have in the pit of my stomach.  Well, I know God does and yes, spiritually I have to keep coming back to His grace, His promise, His will.

But mentally, physically and emotionally, I don't know how to release the pressure valve.  I don't know how to drop the mask to the outside world for fear that if I do I will curl up in the corner and be a mental wreck.

Thank goodness I have Wayne who has known anguish and pain and pressure, and who has amazing empathy for my mental state.

The Cancer Society provides counselling as part of treatment and I'm guessing after reading this you will say "Lady, you need counselling".

So I have written this blog to enlighten about the mental struggle that goes on within. I have had the latest operation in a last hope of getting rid of the cancer, but with the knowledge of 'when' not 'if' it comes back, I am scared and frightened and confused.  

If I could have stayed at the beach and never come back, I would have been content.  There, I placed no pressures on myself...I could just 'be'.  How do I learn to do that back in the real world in Taupo?  With counselling?  Medication?  Lean on my faith more?  Drink more wine? Shut down emotionally? Keep on hiding it from everyone?

It's a big question...  

Here we go again...

8/3/2015

How to go from high to low in 24 hours.  'Gladys' my prosthesis was such a confidence booster on Thursday and I am thrilled to bits with how she is working out.  I really felt I had turned a corner.

But I got a call on Friday to go to Rotorua for an oncology consult.  I thought it was just to tell me about my change of meds and a repeat of what the surgeon had told me so wasn't worried.  Unfortunately Wayne couldn't come with me so when I walked into the consult room to see Elaine, the chemo supervisor; an oncology registrar; and oncologist, Ian Kennedy, all looking pretty serious, I was on red alert.

Mr Kennedy proceeded to go through my cancer file from the lumpectomy in January 2014, explaining the purpose of the chemo regime, the results of MRIs, CT scans and the hormone treatment, right through to the mastectomy two weeks ago.  In essence, he told me that the mastectomy was the last hope for a cure.  

Due to the cancer coming back while I was receiving treatment, it is displaying invasive, aggressive cancer and it is saying "we don't need estrogen to survive, we can do it all ourselves".  From this way forward, he informs me, it will be a case of controlling the cancer, not curing it, as that attempt has been done and dusted.

So they are going to monitor me closely with CT scans in 6 months but any niggle I have I am to get in contact straight away.  He says I have a very very slim chance of the cancer not coming back and "when" it comes back, he said, not "if", it will probably be in the bones, liver or brain.

As you can appreciate, this has been a hard bit of news to take in.  To say I am numb is an understatement, but I know I will process and work with this.  I have great support with Luke and Christine now in town, and of course, Wayne, and my wonderful friends and colleagues.

I'm not dead yet, that I know, and I refuse to wallow, but please bear with me as I learn how to live again.  I have had tears a plenty, and lots of looking into open space, trying to figure out how to be brave and go forward.  It's a tough ask and as time goes on and if cancer decides to stay dormant for months, then I will learn to relax again.  I am strong in my faith, I know God will not forsake me whatever comes along.  It is my loved ones I feel for at this time, so please, give them a hug and remember their pain and concern as they support me.

I'm back to work tomorrow for a few hours a day as I build up again.  I am still recovering from chemo residue, radiation residue, two general anaesthetics and an amputation of the breast, let alone the emotional and mental state - good grief, it's a wonder I am smiling when even I read what I have typed.  

And so life goes on - some good news is I had a great-niece born to my niece Julia and husband Peter yesterday.  Photos show Emma Rose is just beautiful. 

I would really love it if we could all remember to love our loved ones that much more and be generous with those hugs.

Until next time...

Mastectomy

21/02/2015

I never expected to be in this situation so soon.  Once diagnosed with cancer, it is always in the back of your mind that the disease is lurking, waiting.  It's sad to say this is how cancer patients do live. I have read enough on Google to know this is perfectly normal.  No amount of positivity is going to keep cancer away, but a positive attitude saves you from sitting in the corner and curling up in the foetal position and letting a wonderful life pass you by.  I choose positivity!

I arrived at hospital on Tuesday 17/2/2015 to be met by a host of beautiful nurses, who I call Angels, some of whom I had last year.  They were sad to see me again so soon and took great care of me.

My left breast left my body sometime between 8.15am and 10.40am.  Where it is now, I don't know but I guess part of it will be with pathologists so they can write up their report.

I returned to my room and declared: "I am a duck...quack" and, on cue, would paddle my feet like a duck.  Wayne and Luke found this highly entertaining.  I also wouldn't let go of Luke's hand and poked Wayne in the face more times than he cares to remember. I would also "go to sleep" when told to as well.  I do recall going off to my happy place - paddling down the Waikato River on a rubber tube - such a happy memory from last Sunday's excursion.

I didn't really grasp what it would mean when I woke up from the three hour operation to find I had had a Mastectomy of my left breast.  My right breast looked awkward, out of place, next to a flat chest.  My initial thought was they should have taken both.  I looked to Wayne to see if he was revolted by what he saw, but he said "It's not that bad, Hon".  A look in the mirror reflected something slightly bizarre - I couldn't really make sense of what I was seeing in the mirror.

I feel that this reality is harder than last year's.  Even though I said last year to take the breast off, the surgeon considered a lumpectomy was enough, and I trusted him then and I still trust him now. He dealt with what he saw at the time - a single lump that was invasive into the lymph nodes.  Even now the medical team are perplexed as to what has happened for me to get another type of breast cancer and whether removing the breast is going to be enough or do I require another round of chemo. The medical team will get together and in a month I will meet with the Onocologist for their plan.

Today is day 5 and I realise, prior to the operation, I made too light of a serious situation. I joked at my own expense about "losing a tit", "cutting it off", "I'm going to walk around in circles", "thousands of other women out there are walking around like me", "easy way to lose weight".  I didn't give my body enough respect.  And I also didn't allow myself to feel - I want to be the "isn't Andrea amazing how she is coping with this" person everyone has come to know and expect.

Well, let me tell you, the façade is cracking, the resolve is faltering, the ability to smile, come what may, feels under strain.  This is tough, and all because my emotions are kicking in.  

Going through chemo and radiation, well you know what's happening; for some reason your body takes what is thrown at it; tiredness is its legacy. 

But when a part of your body gets removed, that is a different story. It is visible every day, in your face, as you stand naked in front of the mirror.  You are now maimed, beyond curvaceous and voluptuous: you are in a state of change.  If cancer comes again, other parts will be chopped off as medicine works out what to do next.  This is my reality.  

I have a dacron prosthesis in a support bra - yes, I am lop sided.  I have staggered sideways a couple of times and got the giggles realising my point of centre is askew.  A weighted prosthesis will be fitted in a couple of weeks when the swelling goes down. 

I managed to lie on my side this afternoon which is progress and such a nice change from my back. Both Wayne and Luke have expressed concern at my deathly snoring!

Luke has now moved back home waiting for his beloved Christine to arrive in three weeks.  Wayne continues to work so Luke is in charge of trying to reign me in.  He didn't succeed today as I claimed cabin fever so off we went out for coffee but only for an hour then back home and rest.  

So, all in all, I'm tired, I'm anxious and I need hugs, so don't be afraid to hug me close if and when you see me - it could be just what I need; and bear with me as I express myself and learn from what the emotional challenge of all this is going to teach me.