Monday 31 March 2014

Day 203: Radiotherapy starts

I followed through with my resolution from yesterday and got to the gym at 7.15a. I did 45 mins of biking (4k), weights and some stretching. It was a starter program that I hope to build upon in the coming weeks and months.

Ii went to the Medicare office at Bridgepoint in Mosman on my way to the hospital. I got back over $400 in recent appointment outlays which wasn't bad for the 20 minute detour.

I arrived at the radiation oncology rooms at 11.35a. I was worried about my 5 minute tardiness until  25 minutes more had passed. Good thing I had my iPad mini to catch up on the news. There are 2 radiotherapy machines and I will be having all of my treatments on the one called "Minerva". I got in at noon, and Sam and Kathy got me lined up on the table. They explained that the beams would be modulated as my doctor had prescribed to different areas of my treatment (which, btw, is my entire left breast).  They put a layer of "green jelly", which was wrapped in plastic, on my chest and strapped it in place. They explained what would happen, told me to lie still and then left the room. As they had described, the machine rotated over my chest and made all sorts of noises. There were no lights and I didn't feel a thing. They came back in 10 minutes later, I got up and dressed and we rescheduled one of my appointments in the school holidays.

I then had to wait to chat with the nurse, which tool about 10 mins. The chat, in which she told me about the possible side effects (skin turning pink like a burn and tiredness) and how to manage them (sorbolene and sleep), took all of 5-10 mins.  I drove away from hospital 1h15m after arriving. That's not the quick 20 mins I had in mind. I can see this quickly becoming a hassle, but I won't complain because it is much easier than chemo.

I had a quick lunch with Hiraani and Sue on my way to Remie's reading groups. The kids and I had a quiet afternoon before heading out to 4 Pines for dinner, courtesy of a voucher passed on by Jonesy. I enjoyed the "beer flight" that was included, though the alcohol just added to my exhaustion. It's lights out at 8.40p for me after dealing with poor Remie having another night terror. Will write tomorrow about the follow up conversation I had with Rebecca, the psychiatrist we saw Saturday last. I don't have the energy for it now.

Sunday 30 March 2014

Day 202: Other people's exercise

Alex did a triathlon this morning: 100m swim/2km bike/500m run. He came in 39th out of 80 and just over 17minutes. Not bad for a boy who isn't well. He was so keen to do it which, coming from a not-athletically-minded boy, we had to support him. The 5.50a wake up was a bit grim but well worth it.

Remie learned how to do a cartwheel today and also went from jumping rope 10 times in a row to 40 after much practice ("I will not give up"' was her mantra).  Very exciting.

My exercise consisted of watching the kids and walking to lunch. Somehow I am totally knackered (ok, the poor sleep last night might be a contributing factor). I am off to bed with a bit of a runny nose but hopes to get to the gym in the morning. I figure I have to start my comeback at some point and sooner is likely to be better than better as I continue to experience the joys of menopause.

Saturday 29 March 2014

Day 201: Exercise

I finally got moving today. I met Rach and Jenny at the pool and did 500m. Ok, it was with fins, but I was late so I needed to move quickly. I'd forgotten about my swollen calves and feet but it was all fine once I did a lap. It felt good to be moving again.

The kids followed with their swim club's "marathon swim", which involves swimming as many laps as possible in 1 hour. Rests are permitted, but getting out of the pool is not. Alex did 1.5km (after coming home from school early yesterday with a sore throat and low fever and vomiting this morning when he woke up) and Remie did1.1km. They dusted me!

I'm planning to get some amount of exercise in most every day from now on. I'm cutting myself some slack and will take 30 mins of walking. I figure my comeback has to start somewhere.

Friday 28 March 2014

Day 200: Prep for next phase

Nothing much has changed today. I still have cankles (and can't remember where I put my compression socks), my eyes are watering slightly less and I am starting to get some inkling of taste. The recovery process is slow, but at least it's recovery.

I got some aloe Vera at the health food shop today in preparation for Monday's start of radiotherapy. I also have my iPad mini ready to go with some books for the wait and Podcasts and audio books for the drive. I'm looking forward to BBC world news and NPR.

I can feel that I'm getting near the end of the invasive and time-consuming part of treatment. In 40 days radiotherapy will be over. Then I'll go on Tamoxifen, an estrogen-blocking drug, for 5 years. At least that's just a daily pill, though it does come with some unpleasant side effects like menopausal symptoms. There will be at least one final surgery to replace my expander with a proper implant, but that's not for quite a few months. I have time to decide whether I fight to get the other breast removed.

For now I'll just focus on recovering and getting back into some regular exercise. That's enough, I think.

Thursday 27 March 2014

Day 199: Planning holidays

On this rainy and cool day I decided I needed to look forward to something so I started to organise a trip to the US in June-July. I didn't actually get much further than checking on airfares and looking into Santa Fe, Glacier National Park and nearby dude ranches, and cabins on Lake Huron in Ontario. One has to be allowed to dream.  The "family and friends" itinerary already includes Boston, Andover, Newfound Lake (NH) and Lake George in upstate NY. The booking will hopefully happen in the next week.

I also had a great catch up with Aileen, who will hopefully have her baby in the next week or so. She is going to deliver at The Mater, so we've decided I can bring her coffee and cuddle the baby while I'm there for my daily appointments. She is doing unbelievably well with her fourth pregnancy; she doesn't even have any fluid retention.

I just read that my annoying side effects (watery eyes, fluid retention, lack of taste) really can last for 3-6 months. Bummer. Oh well, at least I don't have to go back for another round next week!

Wednesday 26 March 2014

Day 198: How much is in the glass?

My ankles have totally disappeared and my calves are tight. I was told this will end "sometime after chemo ends". My eyes are constantly weeping and the glass of red wine I tried tonight tasted b awful to me (but was perfectly fine). And apparently my eyelashes can fall out 3 more  times in the coming year (has to do with the growth cycle). How's that for the gift that keeps on giving?

Contrary to that not-so-uplifting news, I am feeling pretty good and I do think my glass is still at least half full.  I bounded out of bed this morning just past 6a because I wanted to for the first time in months. That was exciting.  I managed the whole morning routine solo for the first time in ages. I didn't ever think that would be so exciting. I am now very tired at 9.30p and am struggling to comprehend that this exhaustion will last up to 12 months. Time for bed.

Tuesday 25 March 2014

Day 197: Demystifying cancer treatment and reaching out

In my yoga class today, my ankles disappeared.  That's right - gone.  So I can now add "fluid retention" to the list of side effects I've encountered.  Happily it doesn't seem to be causing any issues, but I will keep an eye on it.

I've been told in the past few days by a few people that I've helped them better understand what goes on through a cancer diagnosis and throughout treatment.  While that's not the reason I set out to blog, or to share my experiences in person, I am very pleased I can help make what is perceived to be an awful and scary situation more approachable.

As a corollary to that, I'd like to remind us all that showing compassion can be very powerful.  When someone you know - even if just vaguely - is facing a tragedy or terrible event in his/her life, err on the side of reaching out; it may be more helpful than you know.  I know I've struggled in my life to find the right time to approach someone or the right words to say.  Would s/he want to be bothered when dealing with a personal crisis or tragedy?  Would my reaching out be perceived as intrusion on a private experience to someone I hardly new?  I can't answer these questions for everyone, but I do know that personally I have loved every bit of communication I have received. The regular support from those closest to me has keep me going. The messages that have come from far away have touched me most - people just wanting to tell me they are thinking of me.  All of these have been incredibly uplifting.  Perhaps they've been a reminder of how many lives we touch - more than we think.  In any case, when in doubt, call or email or FB message someone; reach out in whatever way works for you to let the person know you are thinking of him/her.  The worst it will do is nothing, and you might just brighten someone's day.  Thanks to all who have brightened mine.


Monday 24 March 2014

Day 196: A hair study (or chemo hair loss with cold cap)

As today was a particularly uninteresting day aside from Remie's night terror that just occurred at 8.30p, I thought I'd do a bit of documenting on the evolution of my hair over the past 5 1/2 months.

Thanks to Kirrily (who suggested the concept) and Daryl (who executed the concept), I have a pre-surgery and treatment reference point.  This photo was part of a series of family pictures we did after Spring school holidays.

5th October 2013
The next hair-related image is from my decision to have my eyebrows tattooed in anticipation of losing them.  It was frightfully painful and expensive, and I looked like Cleopatra for at least a week after.  I definitely had a unique image at Nick's work holiday party 2 days later.  I can happily say, despite all that, that I am so very pleased at this stage that I did it.
6th November 2013
Now on to what happened in chemo.  The Mater offers a cold-cap option, which enables patients the possibility of retaining some of their hair.  What it entails is wearing a cap that pumps freezing cold gel over the scalp for the duration of the treatment, plus 30 minutes prior and 30 minutes post.  There's no guarantee it works, and about half of the women who try it still end up losing enough hair to warrant shaving.  I was initially not sold on the additional time and pain involved (it's bloody cold!), but Dr. Fran convinced me to try it by telling me that it helps with re-growth.  I did lose quite a lot of hair after my first round of FEC (26 Nov), but it was nothing like it would've been if I hadn't done the cap: it would have all been gone.

First cold cap: 26th November 2013
11th December 2013
After my second round of the FEC (17 Dec), I lost a bit more, but I could easily get away with no one really knowing what I was going through unless I mentioned it.  Most of my loss was in a band where a headband would sit, which was rather convenient.
Out with hubby: 23rd December 2013
25th December 2014
Experimenting with a scarf headband: 3rd January 2014
Covering the thinning band: 3rd January 2014
After my third round of FEC (7 Jan),  I lost enough hair to start to feel that I needed some sort of covering when I went out in public, but I was told that my loss wasn't immediately noticeable without any covering.
The start of wearing hats: 15th January 2014
Without head cover and with new glasses: 20th January 2014
With the passage of time, my remaining hair began to return to it's normal colour - I didn't know that I was so dark/grey!  After round 4 of docetaxel (28 Jan), I found myself with noticeable hair loss, but I was able to cover it up easily and still look normal.
The "chemo comb-over" isn't cutting it anymore: 7 February 2014
7th February 2014

Go the Alice band: 10th February
10th February 2014
Front: 10th February 2014
After round 5 of docetaxel (18 Feb), I had a bit more loss which, combined with the further return to natural colour, meant a wider band. My fringe/bangs and hair on the back of my head remained fairly normal.  It is the texture of fairy floss/cotton candy as it's gotten quite thin.

My "eclectic aunt" look: 17th February 2014

24 February 2014
Day of final chemo: 11 March 2014

11 March 2014
11 March 2014
11 March 2014
After my 6th and final round (11 Mar), my hair is not much worse than the last round.  Ok, so the colour is disasterous, and a band around the middle is missing, but it's still great for a scarf headband or a hat.
One week post-final treatment: 17th March 2014
17 March 2014
17 March 2014
17 March 2014

17 March 2014
Here I am a nearly 2 weeks after my last round of chemo in my "naked in public" shot for breast cancer awareness.  I don't know if you can see the lack of eyelashes, but I can sure feel them.  My hair loss is no worse - it's just wet.
22 March 2014
I'm looking forward to my first cut and colour in 4 weeks.  I do hope my hairdresser can work miracles.


  


Sunday 23 March 2014

Day 195: City adventures

We ventured into the city today because Alex and a friend went to an "enrichment" program, called Whizz Kids, at UTS (University of Technology Sydney) .  They spent the day doing animation and claymation on iPads and had a great time.

Nick, Remie and I headed over to the Maritime Museum and checked out the exhibit on whales.  Remie loved the whale bit (she now wants to be deep sea diver) and I loved that it came from the Musee Nationale d'histoire Naturelle, Paris, so I got to test my language skills by reading all the information in French. Nick loved the general exhibits on boats so it was a whole family win.

We hung out at Tumbalong Park in Darling Harbour for a bit where Remie played in the water park and had a ball while Nick and I talked. We had lunch with Netty in a little cafe away from the tourist spots then picked up the boys and headed home. It was a lovely day doing something totally out of the ordinary.

The only annoying side-effect I seem to be having at the moment is runny eyes. Oh, and my lack of taste, though that seems to be returning very slowly. And I'm tired (though that may have to do with Remie's night terrors that lasted until 2.30a). These are all manageable, and won't last forever. Thankfully the next phase won't be as invasive.

Saturday 22 March 2014

Day 194: A full day - finally

I finally feel like I am getting better. I had the energy to fit lots in and don't feel like I overdid it. I couldn't have done it without Nick's help which was wonderful to have.

As my "training" buddies were all busy, I fit my walk in after brekkie at home. Nick dropped me down the beach and I walked home, picked up my car and met the family at the pool for the season's final swim club.

From there Remie and I went to an appointment with a family psychologist who works with lots of families dealing with cancer (she was referred by the Breastcare nurses at the hospital). Rebecca was open and warm and got Remie to talk. I was in the room so heard about how sleep is boring, I might not going to be ok after radiotherapy and school is much harder this year as they have to do maths every day. They came back around to the sleep issue and have come away with homework: keep a sleep/activity log for the next 2 weeks.

I am resigning myself to the concept that Many of Remie's issues do indeed stem from her mouth breathing and subsequent inability to be still. This means lots of compliance from her to fix the problem <big sigh>.

We spent the afternoon at Little Manly with Remie's frien, Hogo, and his family, who are moving to London on Wednesday. I also had the pleasure of a visit from Caroline, a former work colleague who was.up visiting from Canberra. It was so ver wonderful to be out and catching up after being housebound for the past few weeks.

Finally, about 8.30p, Remie had a cracker of a night terror/nightmare. Despite walking down the stairs, she was not awake at the start. She was screaming and jumping. She did seem to wake after a few minutes and explain to me that the water was climbing the rocks and wanted to eat her. She went back to sleep quickly after coming downstairs. Wow.

Friday 21 March 2014

Day 193: Four new tattoos

I had my radiotherapy planning session today.  I walked in the door to the oncology radiation rooms, my name was called and off I went with the lovely Kate.  This was not before noticing, however, that one of the 2 radiotherapy machines was running 30 minutes late.  Note to self: ring before leaving home just to check.  At least today all it was fine for me.

Kate took me into a room with a CT machine and explained that she was going to situate and measure me for my radiotherapy appointments.  I was also going to need to sign the consent form, which Dr. Susan would come in and run me through.  She was on a call, so I had to wait a bit, so Swoops checked things out and mucked around as follows:

Swoops doesn't quite fit on the CT bed


"Well, I don't have hands..."

Dr. Susan came in and talked me through the form, which I signed.  Then I hopped onto the CT machine and Kate aligned me as she saw fit, then marked 4 key spots in marker.  These are to identify the area to be treated as well as to align me on the radiotherapy machine.  One she was satisfied, she put stickers on the spots then put me through the machine.  Once I was out, she tattooed the spots (each about the size of a freckle) so they would be permanent.  She have me a card with my appointment times (which I booked differently for school term and school holidays) and a bar code, which I to scan upon my daily arrival so they know I'm there.  I was all finished in about 20 minutes.  Not bad.  My first return visit is in 10 days, and hopefully the experience is as painless.

I am finally starting to feel not like rubbish.  It took me until tonight but I'll take what I can get - like the beautiful dinner that La dropped by.  I am so lucky for my wonderful friends.  Emma brought the kids some Belgian waffles for dessert as a make up for the waffles she missed at Harmony Day on Wednesday and cried terribly about missing.  All are happy at the end of this week.


Thursday 20 March 2014

Day 192: Counselling and recovering

It was Alex's turn to meet Robyn today to talk to her about how he's coping with my diagnosis and treatment. We had a brief chat then I was sent away. 40 minutes later I was called back in and we talked a bit about the countdown chain.

I asked Alex what they talked about and he was happy to tell me that it was all about how he's doing. He said he thought it was good that he'd seen her as he could talk to someone who doesn't really know him. He seems fine with what's going on so all is good.

I did talk to Robyn earlier in the week about Remie. Her assessment is that Remie's coping reasonably well, but that she's having some issues reconciling her conflicting emotions. She is sad that I'm not well, but she's happy about some of her own adventures. Robyn helped her with that, as well as with some ways to approach Alex. We'll do another session with Remie to help her through the end of my chemo.

I now have very few eyelashes, and today it felt very breezy. My eyes were gritty and teary. I also still have the vice-like headache and came down with a sore tummy after the kids' swimming lessons. Despite that the day was fine. Please can this recovery time pass more quickly?  I'm off to hibernate...

Wednesday 19 March 2014

Day 191: To test or not to test

That is the question when it comes to the genetic testing that I've discussed with both Dr. Susan and Dr. Fran. One of my mother's sisters died of ovarian cancer in her early 40s, but other than that there's no history of breast cancer in my family. I lean towards being in possession of more information as it means I, and my sister and daughter and cousins and their daughters, can make educated choices.  This information comes at a real price as well: the initial consult is $490 (I didn't yet ask about the subsequent blood tests or analysis)!

I booked an appointment for 1st April and am fairly sure I'll go ahead with it. As my long lost kindy friend, Dawn, (who has gone through breast cancer twice), put it today in our email exchange, it's "for Remie's sake".

Tuesday 18 March 2014

Day 190: No more black links

When I started this blog, I chose the title to reflect my effort to find the good in the bad and come out with something even better in the end. As I approach the end of this journey (8 weeks from today the first big steps of my treatment will be finished) and am slowly feeling better, I see my challenge as finding some ways to use my learnings to make a positive implant. Now all I have to do is figure out why, on whom and when...

I started my day with a headache and a short list of things to do.  I figure that I might as well catch up on things and even get ahead while I'm staying clear of the germ-filled public. I finished my list of priority items and just kept adding. My family will run much smoother as a result and I can even find things. Not exciting, but quite useful.

I caught up with Sue for a chat and got to yoga, which was quite challenging  in my current state. It's always good regardless. I spent the rest of the day essentially killing time, albeit it productively. I even have the time to really listen to my kids. I hate to admit it but the slowing down is very useful.

The most exciting news is that there are no more black links on the countdown chain. Woohoo! That means the good fast-growing cells in my body will soon be multiplying.

Monday 17 March 2014

Day 189: Riding the wave

I was so excited about going to bed at 7.45p last night. I had a great sleep and was ready to take on today with energy and optimism.  My outlook was helped by Steph's reminder analogy: I am riding a wave that is taking me to shore and I am almost there (those who know my ocean swimming profile will understand how totally appropriate that is). In 4 more days I will be out of my peak danger frame for infection.

Nick left before 6a for a business trip to Melbourne, so I had the morning to sort out with the kids. Given that there was a chance I was going to feel awful, I planned ahead and bribed them with the promise of a Lego each for being helpful and agreeable. I know the experts hate bribery, but my morning (6.30-9a) was bliss.

Given my current lack of immunity, I had another day of laying low. After walking the kids and P to school, I bought supplies for Remie's Easter hat making (only 1 more year after this term!). She wants to make an Under-the-Sea Easter hat. Of course. I caught up with Mel and J for a veggie juice then walked home. I spent the rest of the day doing chores and things on my list, resting and catching up with a few friends on the phone.  I did realise that I need to plan for a project or the like that will start around mid-May so I don't fall in ahead when my treatment is finished.

The afternoon and evening were uneventful. I love that and am hoping for more of that in the not-so-distant future.

Sunday 16 March 2014

Day 188: Getting through it

Only 2 more black links on my countdown chain! They do seem to be taking an eternity to get through, but I am reminding myself that I am down to days - and very soon mere hours - until the rejuvenation will begin. This is the toughest phase because it just seems to drag on. Today Libby used the example of a big training goal and how one tends to be totally over it by the end. All I can say is that I'm looking forward to crossing this chemo finish line.

After a hot and sunny morning at the beach for the last day of Nippers plus presentation (Rach and M took Remie down so she wouldn't miss it and I made it in my own time), we headed home. I was dizzy and achey, so thought the couch or bed might be the best place to be, which proved true for the majority of the day. I alternated Panadol and Nurofen in between experiencing an big thunderstorm, having a family lunch, keeping my mouth washed so sores stay away and watching "Brave" with the kids. Quite an eventful day, I suppose, for not venturing very far indeed.

I was in bed at 7.45p and excited about it. I'm not sure which one is worse, but I am sure I'll appreciate being well again when it happens.

Saturday 15 March 2014

Day 187: Control (or About as Good as It Gets)

I am reverting to my age-old mantra: It's never about what happens but all about how you react to it. That is, after all, the only control (or illusion of it) that we have over our lives.

The Paralympics were in the news tonight as the first Australian medal was won by a one-legged alpine skier. Unbelievable determination.  There was also a14-year-old boy who competed in the snowboard cross and was incredibly happy to have participated. I was completely inspired by these people who have made the effort to use their hardships to become stronger and more appreciative.

I woke after a good sleep and decided to make the most of the morning. It was beautiful (or so I suspected it would be as it's still dark at 6.30a) so I decided to walk along the beach and meet Rach for brekkie as I knew that both of those would lift my spirits. What a good decision on my part. The view on my walk looked like this:



Jen came over for a quick chat when she'd finished eating with her family, then Rach and I headed off to swim club with M in tow. All was good there, so it was a good first half of the day. 

Remie had a birthday party and Nick and Alex went for a bike ride in the afternoon, so I hung around the house, alternating between reading the paper, doing a few chores, snoozing and trying to find the missing Malaysian Airlines plane (my assessment is that it was abducted by aliens). All in all it was the best possible way to pass the time. I feel about the same as yesterday, which again is about as good as can be. 


Friday 14 March 2014

Day 186: Can this please be done?

I find myself with a distinct lack of energy and desire to put forth a positive face at this point. I don't think I'm giving a nod to depression; rather, it's just a steely acceptance that the next week is likely to be pretty blah.

Physically I feel as I would expect: bloated, funny mouth, headache, tired and start of bone/muscle ache. It's not the actual side effects but rather the idea of having to go through it all again. I am so very thankful that this is the last round of this treatment.

The day was slow and fine. Nick and I took Remie to see Robin, the family therapist. They had a good half hour together but we didn't get a download. I will look forward to that next week.

I spent most of the day at home resting after getting my nails painted my signature blue (painting nails a dark colour is highly recommended as they become photosensitive with the Docetaxel). I dozed through the neighbourhood leaf blowers and barking dogs.

Remie got grumpy after her shower and took it out on me while I was lying down. I got her out of it but then she sobbed to Nick and couldn't tell us why. Poor possum.

After dinner I tried to watch some of the opening round of the AFL season but dozed off. Collingwood was behind when I headed to bed so at least that cheered me up. Tomorrow's another day thankfully.

Thursday 13 March 2014

Day 185: Slowly worsening as the pattern holds

I woke up feeling ok.  It takes forever for me to get out of bed now which is frustrating. After a coffee and my 1 Dex for the day the morning went smoothly. Remie headed off to school with Steph and her boys while I walked Alex up the hill 2 blocks to meet his friend, Ben. They walked to school together, which was Alex's first time going to school without an adult. I get the impression that he starts growing up quickly from here and I'm not sure if I'm ready for it.

I spent the entire day at home feeling ok. I did lots of office admin then had a quick rest. Andrea came over to help me finish clearing my closet, and Rosalie popped in for a quick hello (and also took my used Nulasta sharp container to take to hospital when she goes on Friday for uni). Sue came to pick up Jossi's glasses so there was a slight flurry of activity before pick up.

As Emma was getting the kids and taking them to swimming, I had another brief lie down. I started to feel the onset on the sore tummy/gut and tingly mouth when I got up. The late afternoon/evening was bearable when I figured out that it goes better when I step back. I did eat with the kids and played a few games with Remie but I let Emma do her job. It's much better that way.

I watched a "House of Cards" episode after the kids were in bed as Nick was out. As I watched, I started taking Fungalin to stave off the oral thrush. I feel bloated and tired so am turning off the light soon.

Wednesday 12 March 2014

Day 184: Ok so far, as per the pattern

I slept poorly thanks to the Dex. I was so tired when I turned the light off at 9.30p that I thought I'd be fine, but after tossing and turning, I decided to take a sleeping pill at 1a. Bad idea. I awoke a bit past 5a and was groggy. Lesson learned.

Nick and I took the kids to school then stayed for The K-2 assembly at which Remie got an award for "excellent story writing and always showing initiative in class". She was so proud. It was wonderful to see her so happy and confident after the past month.

Nick headed to work and I walked home afterwards, huffing and puffing up the hill courtesy of the anaemia.  I gave myself my final Nulasta (white blood cell booster) shot, started my anti-thrush medication and had lunch. I spent the afternoon on my "to do" list and cleaning my closet as planned. I even fit in a little rest before Alex and Emma came home. Chris brought Remie home from tennis shortly after, and both kids set to their homework. Despite the slowly increasing bloating and sore tummy, the afternoon was relatively pleasant, in part thanks to Emma organising everything.

Post-shower Alex did his regular post-chemo treat and read aloud to me while I lay on his bed. Remie was in her room happily reading to herself. Again, a relatively pleasant evening.

After a quick grown-up dinner, I've headed off to bed. Tomorrow's decrease from 4 to 1 Dex tablets means I will start feeling less ok. I know the days (and nights) will feel long, dull and painful, but it's only for 13 more days and hopefully my self-imposed quarantine will keep me out of the hospital.  And, once I start feeling better I won't have to get annihilated again. Yippee!

Tuesday 11 March 2014

Day 183: Round 6. The end of chemo. And it's been half a year.

Half a year ago today (6 months from this past Sunday) I received my devastating diagnosis. To mark the occasion, I had my 6th and FINAL round of chemo. Perfect.

After picking up Sue in Errol and getting through the 50 minutes to dive 10km, we got to my 9a appointment with Dr. Fran. I requested a renewal on my Stillnox script and a copy of my blood work results (mild anaemia and moderate lymphopenia) then filled her in on my experiences of the past 3 weeks. She said that I'm likely to see improvements in my eyes and sense of taste in the next 3-6 weeks. The eyes will take longer as the tear cells don't grow back as quickly.

She wrote me a referral for genetic testing in light of the fact that my aunt died of ovarian cancer (yes, this does have implications for the kids, but that's not to worry about just yet). I asked about having my ovaries out as a precaution and she said I could do that without doing genetic testing. Generally, if someone tests positive, doctors would like to have the ovaries removed in one's early 40s. Oops, missed that.

Dr. Fran briefed me on next steps, which include a bone density scan (scheduled for 6th May) and an appointment with her (scheduled for 16th May) to follow up and sort out my Tamoxifen (estrogen-blocking daily pill that I'll take for the next 5 years).

When all that was over, just before 10a, Sue and I headed across to chemo cottage for the last time. I even got the chair from my first round as closure (there are 4 in the room and I've been in 3). The lovely Angela popped on my cold cap for the last time. While doing so she said that I have new hair growing already. How exciting! She also ran through the meds I was supposed to have taken and gave me the Telfast I'd forgotten and managed to get a cannula in with a slight struggle (which meant poor Swoops suffered more strangulation). I sat for the requisite 30 minutes until the cap got cold enough for the Docetaxel drip to start, which meant sucking on ice chips (to prevent mouth sores) and sliding my hands into the dreaded freezing mitts (to prevent nail loss), for the last time. At least it was all over in about an hour. Then I had to wait another 30 minutes for the cap to warm up. Thankfully I had the company of Sue, Ruth and Mandy. The conversation made the time fly. Claire, one of the Breastcare nurses, popped in for a quick hello, which was lovely.

Nurse Angela pleased to be finished inserting the cannula.


The awful ice mittens.


We were outfor the last time by 12.30p and Sue and I headed off to a fabulous lunch at Burnt Orange in Mosman to celebrate. We picked up her kids from school in the convertible which made them happy. I then went and picked up mine and Emma so they didn't have to walk the hill.

The afternoon was quiet as I caught up on stuff and Emma looked after the kids and dinner, plus did Remie's shower and books while Alex and Nick went to Cubs. After a quick dinner with Nick I'm off to bed, having been awake since 4a. I anticipate a fairly good day tomorrow then a steady decline. I'm writing off the next 2 weeks and sticking to my stay-out-of-hospital plan of avoiding crowds and anyone who isn't well. A bit limiting but well worth it.

Monday 10 March 2014

Day 182: Final day-before chemo blood draw done

I felt so elated when I walked out of the pathology collection cente at 9.45a. That was my last scheduled visit -  the last bold draw needle - for this chemo treatment cycle, and there's nothing on the horizon. I can see the light at the end of the tunnel!

While this round is clearly the easiest mentally, I suspect it'll be the hardest physically due to the cumulative build-up of cytotoxic drugs in my system. I'm armed for battle, though, with my side-effect fighting drugs on deck for their scheduled appearances. I expect that the next 2weeks are going to be awful, but when I finally start feeling better again I won't have to go back for another round. Yippee!

I celebrated my last day of feeling good with a walk along the beach with Delia. This is the same walk I did 2 weeks ago that saw me, at the turnaround point, looking for a ride home.  I was fine today.  I'm looking forward to my comeback #4 (2 c-sections and a hip replacement as practice). Who knows, there might be some new career in leveraging that experience...

And then there were the kids: Remie had a 30 minute meltdown before bed (I even filmed it). She said she hates me and we have too many rules. In an unrelated child interaction, Mel's daughter,  Sunny, gave me beautiful cuddles and kisses in Humphrey's, a local shop, earlier in the day. Oh the highs and lows of 2 young firecracker girls.

Sunday 9 March 2014

Day 181: Taste (or final pre-chemo champagne lunch)

I had my FINAL pre-chemo champagne lunch today with 10 wonderfully supportive friends who were able to make it. The exciting bit is that I tasted everything - including the sangria. Ok, so it may have been a distorted sense of taste based on what I've become accustomed to, but it was still better than it's been. Very exciting.

At Havana Beach with my wonderful guardian angels


I spent a glorious morning at the surf beach with the kids while Nick was biking with Owen. Nick came down later after getting Alex to sailing. It was low tide (my favourite) and the surf was benign so it was a relaxed combination of wave jumping and sandcastle building. Just my speed. It was just so nice to be outside after all the rain and my couch time. I'll hold onto the memory as I soldier on through round 6 in the next few weeks.

Saturday 8 March 2014

Day 180: Tops - with a momentary wobble

I had one of those days of enjoying being alive. It started with a beautiful walk along the beach to meet the girls for brekkie. I watched all the Bold and Beautiful swimmers coming out of the water and all the people running and was very pleased to be part of this world again.

The 7.30a viewof the Manly beachfront from the top of the stairs behind the surf lifesaving club.


After brekkie with Rach, Jen and Sue, I went  to swim club and watched my kids swim a few freestyle races plus the 100IM. Remie did the whole thing and I was very proud of her and happy to be able to be there. I had a fabulous rest after lunch while Nick and the kids went for a bike ride. I even squeezed in a swim at Little Manly with Jen and her kids. Nick and I had a great dinner out with Steph and Mark. The catch up was long overdue and I even happily stayed up until 11p.

My wobbly moment came during my morning walk. It was honestly the first time in nearly 6 months that a dark thought passed across my normally sunny outlook. I was passing by the volleyball courts, watching all the fabulously fit young people do their thing, and wondered what happens if I have to say goodbye to all of this soon. What if cancer is how my life ends? And what if I'm one of those people who die young?  Before I went down into that mental abyss, I turned up my music, found some walkers and runners to focus on and stayed in the beautiful present. While my fears may indeed eventuate, it'll do me no good to worry about that now.

Friday 7 March 2014

Day 179: Helping the kids deal with cancer

Nick and I went together to the background appointment at Kids First. Robyn, our therapist, had some great suggestions. After listening to us explain Remie's personality, the situation and the worries/fears/anxieties and behaviours, she helped us break it down. We need to focus on the fears that are driving the behaviour.  Sharing more of our fears and acknowledging that we are dealing with the unknown might make her feel better about how she feels. asking her to draw them could make them seem less scary. Laying out a plan for the next 3 weeks, which are likely to be some of the toughest (one of her best friends moves to the UK in 2.5 weeks), might give her some extra support. Relaxing expectations will give her some room. Reassuring her that it will get easier for all of us in a few months might reassure her.

We agreed that next week Remie will meet Robyn and Alex will go the following week. Hopefully this will give them both an outlet and not make Remie feel singled out.

My day was busy so it was good that I felt great (aside from weepy eyes). There were kids' things and a fabulously painful but effective massage, and after school Remie had H over for a play date. Between that play date and the new Loom Bands, she told me I was the best mother ever. How the tides can change. I hit the wall at 8.30p so off to bed I go.

Thursday 6 March 2014

Day 178: "I never want you to go"

Poor Remie continues to be very troubled. She came to me at 4a, waking me, for a cuddle "because I just love you so much I need to give you a cuddle", she said. She went back to sleep in her own bed fairly quickly. At school pick up, she and her teacher came to me to explain that she had been very upset in lines after recess because she just wanted me. When I talked to her about it later, she said that she's worried that I'm not going to be ok. She struggled going to bed, so I lay down with her for a bit. "I never want you to go; I want you to stay with me forever", she pleaded. I am so glad we are going to see a therapist tomorrow.

In other news, I had coffee with Gail today and she prepared me for the very large bills that accompany radiotherapy (upwards of $2k/week!). She suggested I check in with Medicare to make sure I'm registered for the safety net. She also advised me to plan for delays in the actual daily treatments due to machine repairs. I'm sure that phase will be frustrating but I can't imagine it will be harder than chemo. Time will tell.

Wednesday 5 March 2014

Day 177: Next step (radiotherapy) scheduled

Today I got mentally both closer to and farther from the end of this treatment journey with the acquisition of new information. I also managed my weepy eyes for another day, so I'm thinking I could be about to see the end of that for this cycle.

I met with Dr. Susan, who was about 30 minutes late. Thankfully it didn't take us long to get to my radiotherapy scheduled and for her to do a quick exam and explain the possible side effects (primarily tiredness but also possible sunburn-type burning and skin darkening). After a planning session on 21 March in which I get the focal points tattooed and the machine set up for me is recorded, I will start my radiotherapy on Monday, 31 March.  This will be daily (except Good Friday, Easter Monday and Anzac Day) at 11.30a (to allow for drop off and exercise and to avoid school traffic). I forgot to ask how long it takes, but I seem to recall the actual "light show" part is no more than 15 minutes though I'm planning for about 2 hours round trip. I will be finished on 7 May. There is another milestone to work towards.

I felt like the end was not in sight when I learned that eyelashes can fall out 6 weeks post-chemo and it could take 3-6 months for other side effects (runny eyes and loss of taste amongst them) to go away.  That's a long time to not be able to enjoy a drink (I tried a sip of Nick's wine tonight and it tasted awful). Add to that the 6-12 months it'll take for me to get over the exhaustion and regain my energy, and that makes the tunnel seem long again. I'm just going to focus on surviving the aftermath of the last round of chemo in the coming weeks - and not having to do it again. I'll also look forward to my first haircut and colour at the end of April (poor Heather is going to have quite a task given that I truly have a multi-coloured mullet at the moment) as I've lost too much hair at the top to really do the "chemo combover" anymore.

Tuesday 4 March 2014

Day 176: Keep going

I'm having a moment of feeling like I'm climbing Mt. Shasta 12 years ago. We woke up in the dark at 1am and set out up the snow field, one foot in front of the other. I'd use my headlamp to fight an object to use as a goal, then do it again. It was a bit like that at the beginning of my diagnoses. When the sun rose, the mountain looked different, but I could see how high it was and how far there was to go.  Once we got up and started heading down, I didn't want to stop for fear that if I did I wouldn't start again (the poor guys on my rope).

I feel like I'm on the downward climb now. I'm tired and sore, but I don't want to stop to think about it  in case I dwell too much on it and don't get going again. I can see the tent at the bottom but it's still a ways away yet. Tomorrow, when I meet with Dr. Susan, my radiation oncologist, I will know how far away the tent is.

My eyes were runny and sore this morning. The cleared up a bit after more steroid eye drops, just in time for a coffee with Alison and yoga.  I found I was more energetic than last week but still opted out of a few things at the end of the one hour class.

Emma was back to pick up the kids and do afternoon duties. It was great to have some help, and she said she's around until my mum arrives in 5 weeks. That's a relief.

Monday 3 March 2014

Day 175: Relatively "normal"

Perhaps it is testament to where I am in this journey that starting off the day with espresso cup full of a revolting white blood cell-boosting herb mixture and steroid eye drops constitutes "relatively normal". Bizarre.

I did actually feel pretty good for the day up until around 5p, when I tend to get tired most days. I saw Dr. Karen to get referrals for Remie (psychiatrist) and me (to Dr. Susan, my radiation oncologist who I see on Wednesday to plan out that next step). I had lunch with Hiraani, did the grocery shopping (no bruises from carrying the bags) and did reading groups in Remie's class. I spent some individual time with Alex and Remie while the other was doing piano lessons at home in the afternoon. All good.

After dinner I watched a story on The Kids Cancer Project. Wow. The funding they are providing for finding ways to treat neuroblastoma and other forms of children's cancer is amazing.  And wow again to the children fighting cancer. What they have to go through is heartbreaking and their bravery is humbling. I suppose it is amazing what we can all find within us when we have to.

Sunday 2 March 2014

Day 174: Laying low

After taking Remie out to brekkie, then picking up Alex from his sleepover and dropping him at sailing, we made a quick trip to the mall to get a few things.  And that was my outing for this Sunday.  It was another day of mostly hanging around the house in the rain, reading and doing a few chores.  Boring, but I suspect quite useful for my overall health.

Remie seems to have settled down a bit, perhaps because she's slept relatively regularly in the past week, or she finished her antibiotics, or Alex was away, or she had lots of time at home, or something else entirely.  Who knows?  I just hope it continues.

The countdown chain is getting shorter and only has one more segment of 7 black links.  I can't believe they come in 8 days as I'm not yet feeling well enough to fight off another round.  With that said, I'd better go have my "cinnamon dirt" (Chinese herbs that help boost my white blood cell count).  It takes terrible, but I'm happy to endure it if it keeps me out of the hospital.

Saturday 1 March 2014

Day 173: Learning to decline

My sleeping pill last night gave me 5.5 hours before Remie woke me.at 2.30a, then again at 6a. I know she is struggling, but I'm having a hard time having sympathy through my exhaustion.

I didn't quite get going this morning and swim club took it out of me. We were planning to go to Joan and Jonesy's for a BBQ, but my tiredness and headache led me to make the tough call to cancel. I was disappointed as I was looking forward to catching up with old friends, but my 2 hour sleep led me to belive that I'd made the right call. I could've slept longer but Remie came in and woke me after telling Nick she wouldn't. She sure is making this hard.

Alex is at another sleepover birthday party and Remie went to sleep quickly. Quiet. Nick and I watched an old episode of "The Americans" on Foxtel. What a rocking Saturday night.