Hello Floodgates

Yesterday afternoon was pretty rough emotionally. I tipped over the edge from 'coping quite well' to 'completely-lost-the-plot-I-can't!-I-just-can't-do-this!!!'. My bravado was shot to smithereens.

And all over a hospital admin glitch and a tantruming four year old.

Thursday left me feeling quite turbulent inside. I went into that consult having read plenty about chemo and hormone therapy. But having a team of health professionals, my team of health professionals, give me the long list of side effects that would and could happen to me over the next five months, coupled with the sight of so many other patients in various stages of chemo had a profound effect on my stiff upper lip. All of a sudden I felt fragile and the weight of my situation began crushing my resolve. I tried very hard to shake it off and gave myself a stern talking to which got me through the rest of Thursday.

Friday morning we enjoyed a playdate at a friend's house. When we got home I booked my CT scans at the private imaging centre for Tuesday. The receptionist who took the booking quipped kindly that "it wasn't fair, I was too young"...she meant well but her pity just pushed my tears towards the surface. Next booking was the bone scan at Canberra Hospital's Nuclear Imaging. My oncologist had sent through the request but the female receptionist couldn't seem to find it. Not a problem, I thought, I'll just chase it up with Oncology and try again later in the afternoon. Oncology were helpful and friendly, told me they'd follow it up and to try NI in a few hours so I took a nap.

I tried again just after three but the young bloke at Nuclear Imaging couldn't find the request. I was starting to feel like piggy in the middle. It was at this precise moment that Harry walked in screeching like a cockatoo about a toy that wasn't working. Not being able to hear a thing I asked Master Four to go outside to Daddy but he refused and continued to scream all the louder. (What is it with preschoolers and their sixth sense for interrupting important phone conversations?). I apologised but the noise obviously didn't impress the NI guy because he said dismissively that there wasn't anything on the system. It was then that I begged him to help me out, could he please follow it up with oncology. By this time I was in tears. I'd been the good, brave patient for four weeks. I'd taken the loss of my breast with as much positivity as I could muster but a lost form was simply too much to bear. He said he couldn't help me and with that I hung up and started sobbing to the point of hyperventilation.

By this time Hubby had come in from the washing line and began dealing with our four year old drama queen. By the time he had put Harry in time out and convinced Jack to stop hugging his ratty big brother when he was being disciplined, I was found curled up in a ball on our bed...a complete mess.

My husband...my calm, collected knight in shining armour.

He held me, let me rant about how I couldn't cope anymore, then, when I'd calmed down, told me that I was going to go and sit out on the back deck with the cup of tea that he'd make, relax in the fresh air with a magazine and not worry about it. He would deal with it.

And that is exactly what happened. He understood. He had been watching me for weeks, watching how I had been holding everything in and was ready to swoop in and take things in hand when it all got too much.

I wasn't angry with Harry for throwing a tantrum. I knew that he was tired from preschool. I wasn't even angry with the Nuclear Imaging guy. It was just a case of the proverbial straw that broke the camel's back.

An hour later, both boys were happy and playing, I was back in bed resting and Hubby came in with the bone scan booked for Monday morning. Turns out that NI guy had me in the system as a fourteen year old. Silly, silly mistake. But it had all been sorted thanks to the lovely oncology receptionist and my fucking awesome husband. God I love that man!

 

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Oncology Overload

I had my oncology consult this morning.

It was quite a confronting few hours.

As I sat down in the waiting room the realisation hit me that I was the youngest person in the room by a good ten or fifteen years. The majority of patients were between sixty and eighty and I felt very much out of place. A youngish newbie who didn't really know what she was in for...not a jot!

A nurse called me in to get my obs and wouldn't you know it, I've lost six kilos since the Big C knocked on my door. Ironic that it took cancer to relieve me of all that Christmas Cheer and get me down to my goal weight. Fairly fast weight loss program but not one I'd recommend. I'd prefer daily exercise and a decent diet over surgery, drugs and immobility.

I met my oncologist Dr Davis shortly after, whom I immediately liked, and we sat down for an hour long discussion. In hindsight it was probably the one consult that I really should have brought someone else along to. The sheer volume of information was quite overwhelming and by the end my brain was imploding.

Essentially, after a very comprehensive consultation Dr Davis recommended the TAC chemotherapy schedule which involves six rounds of chemo administered via IV once every three weeks. TAC is short for the chemo drugs Taxotere®, Adriamycin® and Cyclophosphamide.

Just a sample of side effects include:

Infection due to low white cell count, Nausea, Hair Loss, Mouth Ulcers, Numbness in fingers and toes, Heart damage (potential permanent heart failure, oh yay), Menopause and Blood clots. Some are relatively commonplace, some are very rare. A game of wait and see. Thankfully our family is complete so fertility issues need not apply.

Because my cancer is estrogen receptor positive I will start hormone therapy after chemo which will mean taking Tamoxifen once a day for a minimum of five years and possibly stretching out to ten based on current studies. Food for thought was also removing my ovaries down the track. Side effects include early menopause, cancer of the uterus and blood clots.

After all of that rather delightful information was delivered I saw the head nurse and we discussed the issue of my veins...or rather the lack of nice plump veins remaining in my left hand since the right one is out of action post surgery. I had to decide if I wanted to have a central line, also known as a port, inserted under the skin in my chest. The pros were that chemo can be administered and blood can be taken without the risk of veins collapsing halfway through the treatment. The con...infection and clotting, general anaesthetic & surgery to insert and remove the line etc etc.

I just wanted someone to tell me what I had to do. My mind was in meltdown. I didn't really want to have a port if I could help it but didn't know if the two half decent veins I had left would hold up for 5 months of chemo...geez louise, I don't know! I had to make the decision then and there and in the end I decided to hope for the best and not get the port. Worst comes to worst, if my veins are kaput by round three or four, they'll wait until my white cells are high enough and I'll get the port. Risky but then this whole ride is riddled with risk.

Next was the chemo education session with the nurse which was another 40 minutes of re-enforcing everything that my doctor had discussed with a whole lot of practical advice about coping with the chemo and a tour of the treatment room. The nurse had a great sense of humour which helped. Still...I walked out of there carrying a small mountain of paperwork and pamphlets feeling dazed and overwhelmed.

Where was I to begin...how could I start processing it all?

I wandered slowly through the corridors of the hospital, made my way back to my car and sat staring at the dash. I needed a quiet place to think. I realised that I'd forgotten to have breakfast in the rush to get Harry's lunch ready for preschool...I needed something to eat and I needed a strong coffee. I found myself driving to Manuka to Urban Pantry my favourite little haven, grabbed a seat at the back and ordered soup and coffee. I spread my stack of papers and my diary out on the table and started making a To Do list. I'm a list girl, always have been always will be.

First things first...booking all the tests required before chemo began. Bone scan, heart scan, ct scan of chest, abdomen and pelvis and several blood tests. I consumed a comforting bowl of cauliflower, ginger and corriander soup with sourdough toast which helped ease the shakes. Once the practical tasks were organised in my diary I packed the rest up and had my coffee. I couldn't read the other booklets. It was just too much in one hit and I was fighting hard not to burst into tears.

I paid for lunch and walked across the small green to a little shoe boutique. A mecca of beautiful shoes. Beautiful expensive shoes. I bought a lovely pair of Aubrey London leather flats and didn't care a wink. Then I went into the bookstore and bought a beautifully illustrated edition of Alice In Wonderland for a dear friend who gave birth to her beautiful baby girl yesterday...a little girl called Alice. I still felt numb and turbulent and lost but I was surrounded by beautiful things. I needed a bit of beautiful to help cancel out all the ugly that had invaded my morning.

Then I came home to a very happy little boy regaling tales of preschool and new found friends. And a message from a beloved friend from far up north which included this...

Encouragement, perfectly timed and gratefully received.

I will give myself the time to work through this information. I will allow myself to feel how I feel. I will accept comfort in all its beautiful forms. I will believe in the above affirmations. I will get through this, day by day.

It is all I can

 

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