Phase 3 of Breast Cancer Recovery and 2 years post diagnosis

2 years today since diagnosis.

I came across an article the other day. It seemed to hit home on exactly the day I was feeling overwhelmed by what I have been through. For those of you that have ran this race with me, you would probably wonder what's wrong with me?  Why can't I just get on and live my life now that I've been cured?  I would think that too - if I wasn't me.  

I can only describe the terror of a diagnosis as something along the lines of maybe (?) what the terror attacks are like for those involved. I don't know and I'd hate to trivialise what those people go through but it is potentially loss of your life in front of your eyes?  Its a terror in every limb in your body and I have never experienced anything like it in my lifetime until then.  That same feeling, is what I feel when I have an unexplained pain or hear of some news of a breast cancer survivor having a return as stage IV - like Olivia Newton-John. It sends me to a darker place.  I have been brave for everyone and brave for me and now it's time for me to allow me to grieve. Grieve for my old body, to be scared and allow myself to be.  And then get on with it......

I've taken a snippet from the article, a fellow breast cancer survivors' blog that explains exactly where I am right now (just before I get on with it).  

So I have resigned from work and I'm going to take some time for me and for my brain to catch up with all of this. My last day will be the day before my next surgery 23rd June....... Coffee anyone??? 

Time to finish colouring in my picture too.

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The third phase of breast cancer is vastly different from the first two phases. 

Discovery and initial treatment are over. You may have moved into a maintenance stage of care where you only see doctors for periodic checkups. For the most part, you’re on your own. There’s no safety net of medical staff constantly hovering around you. This is a doubt filled and fearful time. 
Of course, your doctors are still available should you need them, but they aren’t constant in your life now. This stage is just as important as your active treatment phase and will require you to listen carefully to your body.    During the recovery period, the third phase of breast cancer, your focus will shift from the world of treatment to regaining control of your life. You’ll start to pay close attention to your body learning to understand the signals it gives you. Your body will begin to work its way back to health. Our bodies are made for this! Our bodies are miraculous and are always in the process of healing from injury. For example, before breast cancer, have you ever suffered a cut on your body? 

Over a period of days, your body worked hard to repair the damage. Even if the cut was minor and all you did was clean the wound with soap and water, your body spoke to the skin and tissue cells telling them where the injury was located and how to heal it. Slowly and surely, the wound began to close. A scab formed and after the scab loosened and fell off, new skin began to grow. Before you knew it, the wound had healed. You may have been left with a small scar but the wound was gone! Your body had done its job. It was a tiny miracle. In the same way as the tiny cut healed, our bodies are programmed to find ways to repair and heal larger wounds.    

After active treatment has ended, it’s time to focus on optimising your health. This might include changing your diet, adding exercise, or taking natural supplements. This is a time where you want to provide the best possible environment for restorative healing to take place. Not only will you want to provide good physical changes for your body, you’ll also want to provide good mental changes. 
Eliminating stress is a good way to help your body stay in a positive healing state. Your body is a powerful thing. It will signal you when you’re dealing with things that negatively affect your health. 

You may find yourself dealing with frequent headaches, stomachaches, or you may feel anxious. These are signals that say your body is suffering undue pressure. As you listen to your body, you’ll find it necessary to combat these symptoms. The remedy may be as simple as removing yourself from a situation or taking a hot bath. As you learn to understand and eliminate stress in your life, you’ll find your health being optimized.    

The journey to health after breast cancer is never really over. The road to recovery will take the rest of your life. Every step along the way will provide its own unique experience. Yes, breast cancer was a huge detour along your life path. Your road was filled with many twists, turns, and unexpected challenges but your final destination hasn’t been reached yet. The best thing you can do, as you travel the road to recovery, is to set your sights on enjoying each day as it comes. Take one day at a time and do the best you can to stay healthy. Listen to your body and let it guide you along the way. Try not to compare your journey to those of others. You are unique. Your journey is yours.  

- See more at: http://www.curetoday.com/community/bonnie-annis/2017/05/the-road-to-recovery-after-cancer#sthash.F901j3qI.dpuf

The Last Surgery

I have a date with the Plastic Surgeon on the 23rd June.  Just after my 2 year anniversary of this shitty disease.  Hopefully the last surgery I will need to do with this reconstruction anyway. Some reconstruction revision surgery (borrowing from Peter for Paul) and building fake nipples and liposuctioning my hips to put back into my buttocks. I feel like a spare parts yard.

I know I have another surgery with the curette for the polyp in the uterus. I just need to get through all of these latest round of appointments before I go down that road as well. I've just visited my breast surgeon who is happy with everything.

I have an appointment with the Cancer Centre next week to suss out some side effects I'm having from the drugs.  I have been having some tinitus ?  buzzing in my ears and some other things. My GP is not around, she's on extended sick leave so it leaves the cancer centre and my oncologist to help me out. I might also see if I can change medication now that I've been post menopausal for 2 years. It seems to be the standard time they need to determine if you are pre or post menopausal.

I also have an appointment with my radio oncologist.  He phoned about a month ago to see how I was going - which was nice of him.  It was quite out of the blue to receive his call.  I wasnt home so he spoke with John. Maybe he was confirming my appointment with him?? Who knows.

Exercising 6 times a week is a hard ask between work and kids etc.  I was swimming until my shoulder froze up and now have arm pain.  You can imagine what comes up for a breast cancer survivor when I doctor google that one!!!!!

It is a mental game - always trying to be the utmost in positive and pushing down any negative thoughts. I have to remind myself that I had a Pathological Complete Response......no residue cancer. So logically....none in my body either.  Stories of other cancer patients plus I'm in a couple of 'Cancer Clubs' so am surrounded by others at varying stages of this process.

Imagining myself as an old lady is the best way to re-focus me and dancing at my kids weddings :)

Before, During and Now

On this journey, I have had hair and taken it for granted.....

 

I shaved it off during chemo and worn a lovely wig, cant complain about it, it was a good wig

I've given up the wig once I had an even coverage of hair covering all of my bald spots.  So grateful to have hair again - even as a pixie cut.  This is my birthday photo post single mastectomy and reconstruction 1 month before and post radiotherapy a few months before.

Finally, with a little bit of help from some real hair extensions sewed into my short hair - can you see the happiness beaming from within.....I cant describe that :) but you can see it!  Here I was out with Heidi celebrating being Marcellin Mums at a function seeing Jasper Jones. 

Scary Days

Today I had to take some big breaths.

The past 2 days I have been waiting to hear from my oncology gynocologist.  Wednesday morning I went and had my internal scan to check the lining of my uterus since being on Tamoxifen.  I had ignored my oncologist and breast surgeon, and thought it might be good for me to get a baseline scan before starting Tamoxifen since it can thicken the uterus lining and cause uterine cancer.

Thankfully my onco gyno agreed with me and gave me the referral back in August last year. It had been 6 months and I had a referral for another one.  I received a call from the ultrasound clinic by 11am advising that there was something picked up in the scan when comparing my baseline scan.  He was sending through the report to her and she will decide the next course of action.

So I have been patiently waiting for 2 days.  This afternoon I received the call from her rooms....and thankfully she sees no hurry to do anything right now.  Take a breath.

She has suggested that we watch and wait.  I have a 7mm polyp in my uterus, but it has no blood supply.  She is not worried at this point.  So we are relieved for now anyway.  I might consider a hysterectomy or at least a curette, but will wait for her written letter and seeing her at a later date.  As I have always taken affirmative action throughout this process, I might push for doing something rather than waiting.

I received some other good news that Jana got in to the high school that we wanted, Our Ladies of Mercy College (OLMC).  Some of Jana's friends didn't get an offer, so there was some text messages and nail biting moments. Heidi volunteered to swing by my letterbox while I was at work to put us all out of our misery.  And she phoned with the good news.   Take another breath.

Tomorrow is Jana's Confirmation night so we have been getting organised for that.

John's last day today as well - he will be a house husband for a little while - at least until he gets another job.  So far he hasnt had much luck securing anything, but at least the redundancy will see us through.

I love Gabapentin

Today was my catch up with my breast surgeon.  The appointment was light hearted as we laughed that I no longer remembered what floor she was on when pressing the elevator button. It's been fantastic living life normally without all of the appointments. I remember waiting for her appointments nervously not knowing what she was going to say after each MRI or test result.

She checked me over and said that the next appointment would be an ultrasound.  Now there is no breast tissue to mammogram, she will be checking the skin to see if anything appears there from any random cells and also the lymph nodes to make sure nothing else develops there.

I see the radiation oncologist in June, my plastic surgeon on 5 May and I need to have an ultrasound for the oncology gynocologist which I need to book yet. This is to check for any side effects from Tamoxifen, which can cause uterine thickening, which can then turn into cancerous cells.

I have been to the menopause clinic at the Royal Womens Hospital who put me on Gabapentin. I take this each night, with a Tamoxifen chaser.  In bed each night felt like I have electric shocks through my hands and feet, and burning under my feet - its crazy trying to get to sleep. This drug is used for nerve pain and epilepsy. Noone really knows where the nerve pain is from - it could be from the Tamoxifen, or the lack of estrogen (menopause) or from chemotherapy. Or all of those things.  The pain on the top of my feet in the mornings when I wake up has to be from Tamoxifen for sure.

It will be 2 years since diagnosis in June. I still have a little bit to go of treatment, but at least active treatment is finished.  Sometimes I wonder if the worrying will stop - if I keep busy enough it does, but there are always those quiet times and at the least expected times.

Inverloch

OTIS Foundation Family Getaway, Inverloch

Its been a while since I’ve written anything here.  Its been great to have some time-out of this experience and enjoy some normality, well my new normal.

I have taken the opportunity to take up a gift from the OTIS Foundation.  They offer free accommodation to breast cancer patients.  There are several property owners who donate some weeks to the Foundation.  The place we are staying is in Inverloch, in Gippsland, Victoria called Merrileugh.

I sit here looking across the farm and out to the sea.  It is breathtaking and almost criminal that I am typing on my computer.  I will share some of this place with you in photo’s but its better than the photos.

We had a great holiday to the USA last year, it was life changing for the kids, and fun to share it with them. It was action packed and busy. But it wasn’t all that relaxing, except for some wise extended bookings in a resort at Universal Studios where we relaxed by the pool.

But this is totally good for the soul.  There are cows, and sprawling farm land, dogs and cats, a tennis court, ping pong table and of course the surf beach is just down the road.  Its funny I thought of the movie, Beaches.  The kids bundled me up in blankets and put me in a sun lounge chair out on the deck with pillows for wind break as they played coits on the lawn.  It was a moment worth savouring. Andres asked me to blow a fairy and make a wish. Mine was to live a long and healthy life and see my babies get married and have babies themselves.

In terms of this BC story, I have visited the menopause clinic and they gave me some medication to deal with the leg nerve pain that keeps me awake at night.  The good side effect of this is that it makes you drowsy. This is a great benefit to overcome hot flushes and helping me sleep.

At my oncology appointment in February, my oncologist told me that I should be exercising 6 times a week to help in keeping any recurrence away.  So I drag my sorry self up at 6am and swim 300 metres at least 3 times per week, and the other days John and I go for long walks/jog.  Although I’m going to miss daylight savings with dark nights and dark mornings.

We've had fun together, but we all missed John of course. There's been dinosaur digs at a known dig site, going down an old coal mine, 65 metres below the surface and surfing lessons at Inverloch beach.  The lack of technology has made a huge difference to our re-connecting after the last 2 years.

'Bella' the friendly cat

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