Day 273: Gone but not forgotten - or maybe

When I was awake in the night on Tuesday (thanks to a hot flush that seemed to last nearly an hour), I realised that I need to get a compression sleeve for my upcoming long haul flight. How's that for a reminder of the steps taken to remove the cancer? I talked to Claire (Breastcare nurse) about it and she told me I need a proper fitting so she gave me contact details for the nurses who do it. When I rang on Wednesday, they had just had a cancellation, so I'm in to see Theresa next Tuesday to get fitted.  Man am I glad I remembered that.

As I'm contemplating getting my right breast removed as well as having an oopherectomy (removal of ovaries), I asked Claire how I would proceed. She said to come see her when I get back from holidays and she'll walk me through the pros and cons. I can then take my decision to Dr. Andrew, who is not keen on discussing prophylactic mastectomies unless the patient understands the risks. I'm not certain as to what I want so a discussion with Claire will be useful.

I rang today and made my one year mammogram and ultrasound appointment for 9th September, the exact anniversary of my diagnosis. I figured it would be a fitting way to spend part of the day. I also rang Dr. Andrew's office to book in my follow on discussion regarding my expander and the other surgical stuff. His receptionist told me that he is booked out until December and he didn't have time for new patients. She found me an appoitment when I told her that he had removed my breast and put the expander in (!). Unbelievable.

Remie told me tonight, out of the blue and in a light-hearted way, that she would "fall to bits" if I were to die (I can't at all remember what prompted it, but I don't think we were discussing anything related). I told her I wasn't planning on going anytime soon and I thought she was better suited to being whole. She lost a tooth today so was very excited. Happily I remembered so the contents of her tooth box have been swapped.

Alex and I watched a special report on in-home palliative care. The story was of a local woman who lost her battle with mulpile Myleoma and wanted to die at home. She seemed to be an amazing woman who surrounded herself with family and friends and chose how she wanted to go.  Beautiful.

Day 268: The black cloud of fear

I had a perfectly wonderful week returning to the dull and boring routine of normal life. I thoroughly enjoyed my regular exercise and running the kids around. I can get away with simply saying I chose to cut my hair. My memory is not particularly reliable and I'm tired, but I was like that before my diagnosis.

I have actually cherished my cuddles with the kids and time with Nick (don't worry, I did lose my patience with all 3 of them at some points). I appreciate the stories Remie tells and the detailed solution Alex has found to some problem. I know these things don't last forever.

Last night I got to thinking about my high school reunion and showing Alex around campus. It's only 5 years before he'll be old enough to apply if he so chooses. I realised that, by then, I will either be celebrating my 5 year cancer-free mark or not. The idea of dealing with the latter as Alex starts 9th grade sent me into tears. I now understand what cancer survivors mean about "the dark cloud".

I simply have to try to "suck the marrow" out of every day, as Lucy said. I figure it's far better (not to mention much more fun) to focus on that attempt than worry about the dark cloud, about which I can't really do anything.

Day 262: My energy is returning

Between swimming, yoga, gym sessions and even a 2km family fun run yesterday, I'm feeling really good about my increase in energy level. Having been plodding through for the past 5 or so months, it feels great to be able to get up and go. Wail I'm nowhere near what I could do a year ago, I'm ver much enjoying the trend.

I awoke at 3.30a this morning panicked that I'd forgotten to take my Tamoxifen. I quickly rectified that. I'd better be more diligent with this new habit. I was told by the Breast Care nurse who called today during the chaos of school pick up (I think her name was Ann) that the side effects of Tamoxifen can be strong. It's time to wait and see.

Day 259: Oncologist folllow up with Dr. Fran

I had an appointment today with Dr. Fran to discuss my next treatment steps. After 30 minutes in the waiting room, Dr.Ben (he was the one who had contacted me to come in for the double jab in the bottom when Remie had the chickenpox) called us (Nick was with me) in. He asked how I was and went through my main symptoms to see how my recovery was going. All good.

We then discussed Tamoxifen, the estrogen-blocking drug that I'll take for 5 years. Dr. Fran came in and we discussed my genetic testing explorations. I mentioned that I'm considering an oopherectomy and a possible prophylactic mastectomy  (elective mastectomy) of my right breast. She said that a trial on different estrogen-blocking drugs is due to finish on June 1st, which will shed some light on whether Tamoxifen will be best for me.

I left with a script for the Tamoxifen, which I'll start tomorrow. My next appoitment with her is in August. I also have a referral for a mammogram and ultrasound, to be done in early September. I need to book in to see Dr. Andrew, my surgeon, after the mammogram.  In the meantime I just get on with recovery.

I understand now why I was told that this is where people fall apart. I'm so used to having things to do that it feels weird to just get on with life. I did swim a kilometre this morning (very pleased with that), which is part of my version of getting on with it. I do find myself worrying that cancer might be how I go and it might happen too soon, but then I try to make sure I'm doing what I want with who I want. Now that I'm facing my mortality, I understand that life is too short not to enjoy.

Day 257: Comeback #4

After 2 c-sections and a hip replacement, this comeback thing has become a regular 2-3 year occurrence in the past 10 years of my life.  Given this, at least I know how to do it; I swear there's a business idea in it somewhere.

I was at the gym this morning for the second time this week (yoga yesterday). I know, at this point, it is about just showing up and getting back in the routine. Phil, who runs the hole-in-the-wall gym, is fabulous. I told him is was ready to work a bit harder and I need a program for my upcoming 6 week US trip, so he wrote it up and got me going. It is apparent that I've lost lots of strength, endurance and flexibility (what is up with that last one??), but at least that means that I can see progress every day.

I went back to eating a big salad for lunch for the first time in ages. Part of the comeback is getting back into a healthy eating pattern. I'm sure that won't be too hard once all the chocolate is gone...

Day 256: 7 days post-radio and 6 weeks post-chemo

As someone said to me earlier, this, too, has passed. I feel like I'm getting back into the swing of having a life again. My radiation burn is nearly gone thanks to the miraculous Flamazine, which I just finished tonight (I filled my script for a spare tube today). My hair is growing, though I wish my eyelashes would be quicker about it. I wore contacts again today. I can taste everyone I eat and drink. The body's ability to recover is amazing.

The unfortunate part of finishing my toxic cocktails and light show is that I now have the time to think about whether the treatment was able to eradicate and rogue cancer cells. Or what might happen if it didn't. And how I want to live my life knowing that the threat of recurrence is in the background. Do I want to have my other breast removed as "insurance"?  What about my ovaries?

I'll keep turning these issues over in my mind. Thankfully they do not require immediate attention. I'm sure Dr. Fran will shed some light on my next steps and beyond when I see her on Friday.

Day 254: Mothers Day clear out

For Mothers Day I had asked for time to clean my room, and I got it. I spent a few hours clearing out all the "cancer treatment stuff", from meds and scarves to books and piles of things that had just accumulated. I dusted my dresser,  cleaned my cupboard and threw away things I don't need. I am moving on.

This happened, of course, after the family celebrations. We were all piled on top of the bed at 6.45a. Nick and I had coffee and the kids had Mothers Day gifts. Most of what they presented was hand-made, which was lovely. I also received a tea-brewing pot for all my green tea, and they threw in some choc chip chai for good measure.

My other gifts were a wonderful brekkie made by Nick and topped off with some blueberry coffee cake made by Nick and Remie (Alex helped me clean), plus a very enjoyable family bike ride up North Head (I'd also asked to share some experience). The morning was sunny and beautiful.

We had Jenny, Owen and the kids around for a very casual lunch. I knew it had been awhile since we entertained, but I was horrified when Owen had that he'd never seen the countdown chain. We also had a half hour at Little Manly at sunset for a beer/kids snack and play as a reward to cleaning (the kids did their rooms as well).

The only thing that marred my beautiful day was watching a news segment on the Sydner Mothers Day Classic, a fundraiser for breast cancer research. The woman interviewed had lost her mother to breast cancer. When she'd been diagnosed, it was fairly late and two different types of cancer were discovered; she died before she was 50. I, too, had two different types of cancer, and it wasn't discovered early. So my mind is spinning now, and I'm trying to remember that there's no use in worrying about that which I cannot change.

Day 252: 8+ weeks post-chemo and 2 days post-radio

So the end is not here, but I knew that.  This radiation burn and rash has been terribly itchy today.  I'm just about to apply my Flamazine in time for bed, so hopefully that will bring some relief.

I've also had a lovely afternoon of hot flushes.  Remie was at a party at Build-a-Bear at the mall, so I did a bit of shopping with Chris.  I spent the 2.5 hours taking off and putting on my jumper.  At least Chris found it entertaining.

I ditched the blue nail polish today and decided to go natural again - at least for a few days.  My nails have all split and/or peeled, but they seem to be somewhat healthy aside from the rings in my thumb nails.

The good news is that I see a few eyelashes coming in, plus I have a rogue eyebrow hair and I might need to shave my legs in a week or so.  Go the regeneration!

Nick got in from South Korea this morning and we had a lovely lunch date.  It's really good to have him back.  He even bought me some beautiful flowers as a congrats for finishing treatment (I did have to make a pretty blatant suggestion, but he went over the top in the choice).

This is my first weekend post-treatment, and I am thrilled to be feeling better.  I'm told I look healthier, and Rach even said this morning that my hair looks thicker since last weekend (bless her).  In any case, I'm looking forward to leaving the "cancer patient" moniker behind.

Day 251: Starting recovery

Remie came in at 6.30a singing "good morning to you" to the tune of "happy birthday". She then asked me how happy I was that I didn't have to go to hospital. Gorgeous. This is her thoughtful side. She then sat in my bed grumping for a half hour because I didn't want to go get get some milk (remember that she can do this herself.). She is indeed a conundrum.

I had a social and unscheduled day. After Steph popped the boys' booster seats in Errol, I took my darling neighbour R to preschool accompanied by P and Remie, the ride was a hoot as they all pretended we were in an airplane. Hilarious.

I had a great catch up with Aileen over coffee and got in cuddles with baby Leila. If I had been as chill as Aileen is with a newborn I suspect that phase of my life may have been easier.

Steph and I had a wonderful lunch and actually talked in detail rather than on the footpath as we pass the kids back and forth. It was so nice to have her company and not have to eat lunch in the car on the way to and from the hospital.

The skies opened up on and off while the kids had swim lessons outside. They loved it. We went out for burgers afterwards to celebrate the end of treatment. Remie told us that she'd given the final link of our countdown chain to Miss A, who put it up on the classroom wall.

It feels strange to have no pressing medical agenda. I'm looking forward to getting back to yoga and just generally increasing my fitness. I look around the house and see piles of things I've put on hold for the past 5 months. I suspect I will move into "the cleaning phase" shortly.

I find myself thinking about the treatment experience and the incredible well of strength and community of support it helped me find. I'm sure this reflection will continue. Finally, I try to find at least one thing to appreciate and be thankful for everyday and will continue this habit. I imagine that my recovery will happen through and thanks to all of this.

Day 250: The end - at least of this phase

I saw Dr. Susan before treatment, and she was happy with the state of my skin.  She revisited my use of Flamazine daily and wrote me another script for a refill in case I need it. She said I should anticipate the redness increasing with the skin peeling and perhaps even cracking.  It should all be better in 10 days.  The radiologists told me that my skin is quite affected as they are treating only the skin (with a mastectomy there is no breast tissue left), whereas the whole breast skin and tissue are treated in lumpectomy cases, so the skin is not as damaged.

The girls behind the desk at Genesis Cancer Care (aka the radiation oncology rooms) were great today when they noted it was my last day and we said goodbye.  They asked if I was planning a big trip, then asked me to send a postcard from my high school 30th reunion.  Cute.

I left hospital singing the Happy Song but knowing I'll be back next Friday to meet with Dr. Fran about Tamoxifen, the estrogen-blocking drug that will comprise the next phase of treatment.  I'm just going to enjoy the next 10 days of not having to do the commute.  Remie's planning to take the final link in our countdown chain to school tomorrow as she's so excited.

I went home and immediately booked our tickets to the US, where we'll be around the East Coast from 11 June to 28 July, then to SF for a few days before coming home.  There's nothing like a huge health scare to make you look forward to connecting with old friends.

Day 249: One link left on the chain

It is so very exciting to see that lonely link left up on the wall. I can hardly believe that tomorrow will be my last "treatment trip". Unfortunately, the end is not yet here.

In the next week, apparently the condition of my 'burned" skin will worsen. I unpacked my prescribed Flamazine tonight that Dr. Susan instructed me to use for the coming week. It contains 1% silver sulfadiazine and is used to treat and prevent infection of skin wounds. It is applied every 24 hours and I think the plastic wrap/tube coverage is used again. It shouldn't be any more onerous than the Solugel and will ideally promote healthy skin recovery.

It's hard to believe that the tunnel is ending. I'm looking forward to getting back to exercise and to not eating lunch in the car. Simple pleasures are often the best.

Day 248: All things come to an end

Nearly 8 months ago I found out I had breat cancer, and about a month later Dr. Fran outlined my treatment plan. I remember thinking that the 4 1/2 months that it would take seemed so long, and May was so very far away.  And my friends rallied, with Sue setting up a meal train, cooking meals, coming to chemo and radio, and just being there.

Well, here we are.  In just 2 days my in-hospital treatment will come to an end. And in just 1 day Sue will move to London. I think it just goes to show that you never know what will happen. The influence of key people in your life evolves. Sad and happy live side by side, and that's just the way the world is. I'm just trying to remember that good friends never go away; distance just makes those times together more precious, right Sandy, Meg and Tom, Lisa, Cren, Tess, Annie, Greg, Ted, V, Sparks, Sheephound, Cujo, Coiro, Shawn, Kristen, Jax, Rahul, Tawni, Jane and all the wonderful friends I made over time who I don't get to see as much as I'd like due to distance?

In the day-to-day, I had a beautiful walk along the beach in the sunshine, a coffee with the Sellars, a quick treatment, an easy bone density scan and the usual everything else. I'd call that a good day.

Day 247: Girls weekend away

I have returned from a wonderful weekend away in Byron Bay with some of my closest friends in Sydney. It took ages to organise and the postponement of an international move to happen, but it was well worth it.

Sue and Rach came with me to radiotherapy on Friday and we met Jenny at the airport afterwards. We kicked off our tour while waiting for our flight and nearly missed it due to a "little error" on the departures board that had it listed 25 minutes late. Oops. We flew to Ballina, hired a car and checked into The Byron at Byron, which was fabulous.  After relaxing drinks and dinner at the resort on Friday, our weekend consisted of long walks along Tallows Beach in the mornings followed by breakkie and some relaxing. We did make it to the markets today but really just enjoyed having no agenda and no one to look after but ourselves. Mostly we enjoyed each other's company. We did manage to ignore the fact that Sue is moving to London in a mere 2 days.  We will miss her enormously.

I loved that I didn't think about my treatment at all other than when I applied Solugel at bedtime. While the burn cream application will continue for a few weeks (I have a prescription for something stronger that I start on Wednesday), my hospital-based treatment will end this week. My cancer will soon be relegated to being a much smaller part of my daily schedule. I only hope it will consume less of my mental space as well.

Day 244: Deep contemplations

On the drive to hospital today, I spent some time contemplating death. It wasn't in that terrified "oh my God" sort of way, but more of a practical examination. I thought about Alex and Remie, and what it would mean for them. It is already both exciting and sad to watch them take on more responsibilities and become their own people; I got very sad at the thought of having to say goodbye prematurely and missing out on them growing up. I thought about Nick, and how he would live the rest of his life. I considered my mum and sister and extended family, and even though I don't interact with them on a day-to-day basis, not being involved seemed strange. Then there were the practical issues of accounts, assets, funeral, etc. I need to review my will soon. I did cry at the idea of my life coming to an end but realised that I'm not worried about death itself. That was an interesting revelation.

This led me to thinking about my obituary, which, in turn, led me to think about how I want to live the rest of my life. Courageous, curious, inspirational and generous are all words I'd like to be able to include if I were to write my final life summary. "Devoted mother" is another phrase that would make me happy. I suspect I may actually write something as it could be useful to help guide the decisions I make about what I do next. As Ruth said today during our wonderful catch up, I've been through a pretty big "deconstruction" phase; what will the "reconstruction" look like?

It was a beautiful day and I thoroughly enjoyed my drive in Errol. Treatment was quick. I submitted my Australian passport application today. That was $240 worth of exciting. After a few confrontational incidents, I had some good time with both kids tonight. As Tom says, "Everyday above the ground with the family is a good one".

Despite the cold snap coming through, I'm looking forward to my girls' weekend in Byron Bay. It won't be the "laze by the pool in the hot sun" time that we thought, but it will be great to hang out. Pity we will be farewelling Sue, but the shared adventure will be fabulous.