It’s been some time since I posted here. So much has happened and yet nothing to do with cancer has happened. Which I am enormously grateful for. So, it is now time for Cancer in The Tropics to become the archive of my thoughts about cancer and cancer treatment that it was always meant to be.
To all the people who have written to me, on this platform and others, I say a hearty THANK YOU for reading my musings, and for being so incredibly supportive. Your kind words and love got me through a seriously tough time.
I said right from the get go that cancer would not be the boss of me, and I can truly say that now, after the dust has settled, I am thinking less and less about cancer. Some days I don’t think about it all until 6.30 pm when my Tamoxifen alarm goes off on my phone (after all this time, I am still shit at remembering to take it!!). The scars of cancer will be on my body forever but the mental scars are healing, and my life is as close to normal as it can be. I made it out to the other side 🙂
My cancerversary of the day I was diagnosed was in March. Steve and I huddled at home at talked about how much better the year after cancer would be. It was perfect and we made some great plans I will tell you about soon.
Today is one year since my mastectomy surgery. The day the shittiest year of my freaking life got REAL.
I’m not going to lie, I woke up early today and instantly felt like I was mourning. Not just the physical aspect of losing my breasts, but mourning the loss of innocence I had at the start of this. I look back now at this blog and think my hopeful thoughts were sheer naivety, but I am not beating myself up about it. That naivety got me through some tough times.
I thought cancer would not change me, but it has. Physically and emotionally. I’m still getting used to it and sometimes marvel at just how profound some of my shifts in mind set are.
My experience has brought out the best and worst in myself, and I have had to dig deep some times to smile, and get on with it. But with every day that passes, it gets easier and the smile is a bit more genuine.
Healing on the outside was fast, but the inside is taking a bit longer.
Today, I ask you to put on your Star Wars Undies (I am wearing mine) and raise a glass of your favourite celebration drink.
I have written before about not wanting to have a reconstruction. I was seriously against it. For example, when my excellent, much loved Physio H asked me about how my first consultation with the plastic surgeon went, I literally rocked back and forth in my chair saying NONONONONONONONO and muttered worriedly about Frankenboobs. Yep that was me.
And here we are, booking an appointment with the plastic surgeon. To talk about getting the girls back – yes, now you know my pet name for my (former) boobs.
Here is how this interesting development panned out……
You might remember that last year, I had a breakdown when I saw my oncologist because I could not shake the fear that a pain in my spine was cancer. (If there is one place where it is semi ok to cry – it is in the Oncologists office. Trust me on this one). She ordered a bone scan and it came back clean. Clean. As in no cancer. I didn’t realise how scared I was until I got the call. I finally felt like I could breathe. I felt – for the first time – that I had this cancer gig beat. And it was exhilarating. It is worth noting that the pain is still there, it’s just not cancer….
After this news I called my sister on Skype. Being in Aus, it is summer here and she was wearing a bikini. Let it be known that my sister is HOT! So I am sitting there, staring at her perfectly augmented breasts and I got jealous. Not in a weirdo horrible way, just in a “Oh sweet baby jeebus, I will never wear a bikini again” kind of way. And it gutted me.
And then it dawned on me. I CAN have breasts again. I CAN wear a bikini again. All I need to do is have two probably painful surgeries and then BAM the boobs are back baby. I have a LONG life to live and why the fuck not get my boobs back.
I bawled my eyes out. It was partly from relief and partly from being shit scared. After I discussed it with Steve – who is Team Yes (but still hesitant), I called my sister back and she (predictably) was Team Yes. Then I called my Mum, who is Team Yes. 3/3 sealed the deal.
So I called my Plastic Surgeon. And they were on holidays. GAH. But they got back to me and I have an appointment on 30 March. Literally in weeks.
So we are back in “Operation/Operation” phase. I need to lose weight, get fitter and just be generally in good health by the time I have surgery. I am going to wait for another year because if I pay for this myself, I will be ‘out of pocket’ (which is SUCH a shitty insurance phrase don’t you think) to the value of around $10,000.00. Sensibly, I will join a private health fund and get these operations done for about $3,000.00 in premiums over the next two years. In a private hospital. Oh yeah baby, I heard the food is good in there (hehehehe)
I will be going for the tissue expander/implant surgery – mainly because my appendectomy scar precludes me from a DIEP surgery (which wasn’t really appealing to me anyway because it looks hella painful).
Well there it is. Hopefully in a year and a half, I will have nice squishy boobs that we call all play with – I promise that if you know me in real life, you can cop a feel 🙂
Yesterday was Christmas Day and for the first time ever, we had Christmas at home, with just the two of us and our hound. It was great! We got to go at out own pace and take it easy, and the best part is all the leftovers. Ham for days!
Work has wrapped up and it was crazy busy for the last few weeks, which has left me feeling a bit burnt out and over it. Steve recently did his PADI Dive Instructor course and exam – which he passed on the first go (woot) but was super stressful. We both really need this break I can tell you!
Now, in the spirit of full disclosure, I will tell you about the mental health issues I have been dealing with lately. As I started taking Tamoxifen, I had some work problems that ordinarily would barely rate on my stress radar. But instead, I started having anxiety that was utterly crippling. I felt sideswiped by my reactions and really struggled to keep my shit together. I finally cracked one morning and sought help from a Phsycologist. She was great. I wailed on about my fucked up headspace and she explained that the drug was causing the problem. Essentially its like poking a bear, the drug makes things like depression and anxiety more sensitive and the triggers (work stress) overloaded my system. Knowing this made it a bit easier to deal with but lets be real, an anxiety attack is very real when you are having one and not easy to deal with.
She also gave me some solid advice on techniques to deal with anxiety which included floating in the pool. Let me tell you, this worked so well, it was astonishing just how calming floating is.
Which prompted me to check out the local flotation tank place. The float tank experience is incredible. At the one here in Cairns, you enter a big room, with a shower and the pod. You take a shower first to be nice and clean before hopping in the big pod, which is filled with super saline water – the buoyancy is next level! As I sank into the water and relaxed, I literally stopped noticing the water and eventually my body. I felt like I was asleep but I was awake. It soothed my mind, and also took away most of the body aches and pains that are a constant feature since I started on the Tamoxifen. At the end, you take another shower to rinse off the salty water and then go hang out in the chill out space. I can highly recommend it 🙂
In other health news, I have been fasting (16 hours each day) after reading that prolonged daily fasts can help reduce the risk of recurrence. I delay eating until 12 every day and close the kitchen at 8 pm. At first it was super hard but I am used to it now and really feel quite good not eating in the morning.
I have to admit that recurrence has been on my mind a lot lately. I can’t shake the fear that I will get this again, and next time it will be fatal. It is a harrowing thought, and even though the stats are on my side, I can’t quiet this nagging voice in my mind. My back has been super sore lately, just one spot on my spine and OF COURSE I am freaking out it might be cancer. I told my oncologist and she suggested to have a bone scan to put my mind at rest. I feel like a hypochondriac even asking her to talk with me about it and realise this is most likely just good old fear mixed in with some arthritis or something else. But I also have been stressing that if it is cancer and I don’t get it checked out, what would happen??????
I guess this is what everybody goes through in their own way after the dust has settled on the diagnosis and punishing treatment regime. When will I become a survivor?? Is it now? Is it after Tamoxifen finishes in 5 years? Is it when I eventually die of something else? These thoughts keep me awake after I wake up every morning at 4 am, sweating from a hot flush. Gah.
I just read all this and realised how down it all is! Sorry!
Despite my fears, I feel better than I did at the start of all this, am starting to look like myself again, and am super happy because we made it through all the shit and are on the brink of a New Exciting Year.
Last Saturday I went to have coffee with the amazing group of women who formed a support group here and who welcomed me with open arms.
Upon arriving, the youngest member of our group shared some truly heartbreaking news. To protect her identity, I won’t share the details of her diagnosis other than to say she was diagnosed this week as Stage 4. Her primary cancer has metastasised.
I can’t speak for her. I can only speak for myself and share with you what it is like to hear this kind of news.
My first reaction was naturally shock. I sat there making nice small talk but on the inside I was screaming FAAAAAAAAARK. After I got over the initial shock I went over to talk with her and was truly humbled by her grace, her dignity and strength. More chatting, coffee, lalalalalala, then we said our goodbyes and I got in the car.
And bawled my eyes out. I was talking to Steve the whole way home just sobbing uncontrollably. I got home and fresh tears started up. I worked myself up so much, I had to quarantine myself in our bed and just cry it all out and have a sleep.
I don’t really know her that well so, whilst the tears were for her, they were also for me.
Because the truth dear reader, is that no matter what brave face we put on, the hard reality of cancer, and the whole shit show that is treatment is really fucking awful. Yes I admit it – I have faked it. A lot. We all do. Even when cancer isn’t in the house, we have all smiled and said we are ok when we are not.
I have smiled through an astonishing parade of mental and physical pain, horrible chemo side effects and self esteem issues. I will continue to do so because I want to feel ok, even when I am not. It is through other people treating me no differently that I can gain some control over situations where I am vulnerable and struggling with my emotions. I crave normalcy because none of this is normal. None.
At the true heart of my anguish over her news is FEAR.
I have made no secret of my fear of recurrence. It is with me every day. It is behind every decision I make about my lifestyle. I can’t seem to think super far into the future anymore because I don’t trust that I will not get cancer again. This is despite the fact there is no clinical evidence that I still have cancer. And there is that pain in my hip that until I heard her news, was just an annoyance, but has now (irrationally) turned into a concern. I can’t shake the feeling that it is not just a dodgy hip, but evidence the cancer has spread. It is crazy to think this and I know I have fallen into the trap all recently diagnosed people can fall into where they think every little ache or pain is the cancer rearing back up. I know this. But it does not stop me being scared out of my wits. It is simultaneously frustrating and terrifying.
And that brings me to the real trouble with support groups. We are all members of this group because we all had cancer. This makes the women in our group some of the most understanding people when it is time to vent. They have been there. They have seen it all, done it all, felt it all.
But also, we are all a constant reminder of cancer. Whether it is the newcomers like myself who turn up at various times during treatment with hair loss and a list of shit. Or the long-timers who have a slightly haunted look about them. Or those who are weirdly competitive about cancer (don’t even get me started). We all represent that scary statistic that most people know about and hope to never be included in.
And then there are people like her. Who break your heart.
I had an appointment with my oncologist Dr N last week. During our chat, I gleefully told her how much better I feel now that chemo has finished. She seemed pretty non-plussed but I think it made her smile to see me so much happier.
We chatted about the next stage of treatment, which involves taking a pill every day for five years. Erryday. Five YEARS. I have said before I suck at taking pills everyday and only yesterday finally took Steve’s advice to set an alarm after missing a dose. Gah.
The drug I am now taking is Tamoxifen, which if you believe the hype, is shit. I have only been taking it for a week so can’t really comment yet but I have noticed my hot flushes are happening every night now. Thankfully they happen when I am asleep but waking up in a pool of sweat is still gross nonetheless. Potential side effects from this new drug range from pretty mild (hot flushes) to truly terrifying (cancer of the cervix).
Whilst we were talking about the side effects we got on to the topic of periods – you might recall that I had one at the start of chemo and then none. Dr N wants me to NOT have any more periods, which is FINE BY ME! But if they come back whilst I am taking Tamoxifen, I can chose to start another drug that is injected and can make bones hurt.
Seriously, it is a no brainer that I would take the drug because I really really really don’t want to get cancer again but BONES HURTING???? The list of petty injustices grows….
Friday, Steve and I went out with friends and as I was getting ready, I noticed my eyebrows were looking very thin. By Saturday morning, they were falling out all over the place, and then my eyelashes started moulting. Remember we are four weeks since the last chemo so this is a low blow my friends. As I sit here writing this, I can literally count the eyebrow hairs, and I look more “Cancer Patient” now than I did during chemo. Grrrrrrr. On the flipside, my head hair is making a comeback, super soft like baby’s hair but it is coming back baby!
It’s been a while since I last blogged, because, well, life after chemo has been great!
My last treatment, which was three weeks ago, went without a hitch. Steve was able to come which was a lovely bookend as he could come to the first one as well. From the moment we arrived, everybody working in the clinic that day was congratulating me on this one being the last! It was so awesome to have all that acknowledgement of this precious moment. We got home and celebrated with some French bubbles with our friend and then I buckled down for the final weekend of side effects.
Maybe it was because I knew this would be the last time I had to deal with them, but the side effects weren’t too hard to handle and by Monday I was feeling pretty good.
The Thursday after my final chemo I had to front up for Herceptin which although took longer that we thought, was a breeze compared to all the other infusions.
And since then, I have had two weeks where I have felt better every single day! Looking back, I realise how tired and generally shitty I felt during chemo but at the time I genuinely though I felt ok. Weird hey. It has been remarkable to witness all the shitty annoying side effects just disappear. Within about a week, my nose stopped bleeding, by about ten days, my eyes stopped twitching and the peripheral neuropathy disappeared, and now, my body feels almost back to the same it was before chemo started, just a balder version.
Since I started feeling better, I decided to address two things that have been bugging me. My weight – which you might recall crept higher and higher during chemo thanks to the steroids, poor food choices and a reduction in exercise. And my relationship with alcohol, which also has not been great this year, although I think most people in my situation would have self medicated as well.
There is no escaping the fact that alcohol consumption and breast cancer have a link. And that fat cells in the body produce oestrogen which is really bad for me having had oestrogen positive breast cancer. The drug I will be taking next (for at least 5 years) will go some way in reducing the risk of recurrence by suppressing oestrogen production. But seriously, I can also help out by shedding a large amount of weight.
So I decided to take action. I have signed myself up to Michelle Bridges 12 Week Body Transformation program. We are in pre-season now which means that I am taking steps now to ensure I succeed at the program which kicks off officially on October 30th. I have made a commitment to myself that I will do most of the program alcohol free, with a few leave passes for some upcoming events. But for the most part, no booze.
This month of pre-season is a sneaky headstart in a way, because although I have only been following a calorie controlled diet for about two weeks (and not devotedly) and been booze free since Oct 1, (literally only 6 days), I have already lost 2.3kg – which is super promising for my goal of losing 15 kg by then end of the program in January 2017. I have a total weight loss goal of 30 kg, so it will be an ongoing effort.
So yeah, life after chemo is great. I feel awesome, feel committed to action, feel ready to get my exercise mojo back on and to kick some goals that don’t have cancer related to them 🙂
First let’s take some time to count chemo days left, which is ONE. I had my second last one today and next Thursday will be the FINAL CHEMO. I might bake a cake or something.
Ok, I am going to tell you a story.
My sister, Sally, came to visit me last week and she could not have come at a better time. I had actually had a good friend visit the week before (big thanks to S xoxo) and Sal arrived the day after she left. We had SUCH a great time. It was a long time since I had seen my sister and I was overjoyed to have her in my home, living each day of this chemo experience. Anyway that is not the point of the story but gives you some idea how freaking happy I was.
So, we decided, #fuckcancer, let’s go out on a boat and go snorkelling on the GREAT BARRIER REEF. (For those who think this is extravagant, my husband works on a tour boat which goes there everyday – and it is literally in our backyard, so why the hell not??).
It was a perfect day. The sun was shining, the water was warm, the coral is getting some colour back after a savage bleaching last summer and there were fish galore. Sal and I held hands as we snorkelled which made us a bit hysterical cos we though people would think we were together-together. You know what I mean. So the day started off and continued to be full of love, laughter and fun times.
Around noon, Steve, Sal and I decided to head downstairs to the galley and get lunch. Then it happened. I was in the lunch line. Let me paint a picture of what I looked like here – I am bald, (my head actually is a bit shiny), I have put on weight from the steroids, the inactivity and generally bad food choices during chemo (hello doughnut, I’m looking at you). And I have no breasts. I was wearing flower print shorts and a bright pink/mauve tshirt that left nothing to the imagination. But read the paragraph before this one again. I WAS HAPPY! As IF I would let any of these temporary things make me NOT go and enjoy myself with my favourite people in one of the most beautiful places on earth. For those who know me in real life, you would know that I DID NOT CARE WHAT I LOOKED LIKE!
This guy was young, maybe early 20s. He saw me in line and well, the look on his face was pure disgust. He SNEERED at me and could not stop looking me up and down, looking like he had just stepped on a dog turd.
I was shocked. I caught his eye, and for reals, he managed to look even more disgusted.
For a micro – second I though SHIT, I must look terrible!! FUCK! What am I doing here, this is a boat full of lovely young people out having a great time and FUCK, I AM WRECKING THE HOLIDAY VIBE FOR THEM!!!!!!!!!!!!!!!
And then I snapped out of it.
I turned my back to him and faced Steve and Sal, cracked a joke, we all laughed, and I got my lunch and sauntered out of there. I got upstairs, ate my lunch and then got back in the water and continued to have a totally awesome day, which included a nice cold beer on the back deck as we headed home. I did not even tell Sal and Steve till after we got home because I just didn’t want to give this guy any air time that he clearly did not deserve.
That guy is obviously young and probably in that place most of us go through, where anything that deviates from his version of perfect is gross. I’ll admit it, when I was young and foolish, I had a phase like that too, you might have as well. He may have never seen anybody who looks like me, especially on a tour boat and was probably fearful of what my current image represents. Whatever his issue, it is not mine to worry about.
What I did and will continue to do is hold my head up high, knowing that my current shape and appearance is a direct result of fighting hard to SAVE MY LIFE. Yes, I am bald, fatter than ever before, with puffy eyes and occasionally a red face, an acid gut, alternating constipation and diarrhoea, etc. But I knew this would happen and I have always owned it because for me – there was only one choice and that was/is to fight.
It was ME that made the hard, lifelong choice to remove my breasts and live through the consequences of that. It was ME who chose to take the Oncologists advice and go through Chemo with all the physical changes of that. It is ME that has to live every day with the life changing spectre of cancer and all it represents.
It is ME that will have to take the goddam pills. It is ME that will have to grow the hair back – and endure that inevitable mullet stage. It is ME that will have to work my ass off to lose the weight. It is ME that will have to say no to the doughnuts. Not Steve, not Sal, not my Mum, not my friends, not anybody else. Me. And you know what, I don’t mind that it is me. I can do this. I can continue to fight hard to make every day count.
The way I see it, I have an obligation to myself and everybody around me to make sure that all this EFFORT, all this PAIN and REHAB, all this WORRY, FEAR, DESPAIR, all this WEIGHT GAIN and BALDNESS and other SHITTY SIDE EFFECTS is not for nothing. I’m not going to get all weird and talk about being #reborn or anything, but I got a second chance.
Yesterday, I had my first day where pyjamas were the only clothing option I could face and I NEEDED naps, one in the morning and one in the afternoon. Man, I felt like living hell last night. By the time I had collected Steve from work, I was practically a zombie. We went to bed at nine thirty and I completely flaked out.
Today has been better, I at least put some makeup on and went out for a coffee. The rest of the day has flown by with no nap needed but I will be early to bed again.
I had an inkling that this would get harder as time progresses. I suspect the next four treatments are going to be hard.
Well, I have completed half of my chemo. Can you believe it?
I am blown away in how fast the last six weeks have gone. People keep saying I am doing really well and I guess for the most part, I AM doing well. But it the interest of keeping it real, here is what is really going on in chemo land.
If you are a squeamish type, look away now.
On Fridays, I wake up and immediately take an antihistamine and a stool softener (more on this later). The antihistamine is in an effort to stave off what is affectionately called at the Clinic “chemo flush”. Chemo flush is a bitch. As the day wears on, my face and neck grow steadily hotter and redder till I look like an overcooked tomato. My face literally is hot to touch. It is AWFUL. It takes a sleep for it to go away and sometimes I get it again on Saturday. Oh the joys. If this is what a menopause hot flash is like then, man, I am SO not looking forward to drug induced menopause (which is a side effect of TAMOXIFEN – the next lot of cancer recurrence prevention drug I will be getting).
Since I had that lovely reaction to chemo, I have been getting an extra steroid in my premeds, which makes me constipated almost immediately. Like the morning after chemo day, it is not happening. Unfortunately, if I do manage to go, I bleed. Yeah. Bleed. So a stool softener is essential.
Another side effect of the new steroid is a gnarly acid gut which kicks in almost straight away, and lingers even after the steroids wear off. The acid gut makes everything taste rubbish and BURNS. I bought some Mylanta for this week and it really does work. But it makes me feel old lady.
Once the steroids have worn off, which is usually by Saturday afternoon, I get the total opposite of constipation and have to run to the toilet 4 – 5 times a day. A DAY!! We have been buying a lot more toilet paper than usual. UGH.
I cannot blow my nose without it bleeding. It is not gushing out of my head or anything gross like that, but every nose blow has a bit of blood in it – and it bleeds a bit afterwards, which begets more blood next time I blow. Vicious circle.
Saturday afternoons are super sleepy these days. I have new respect for parents who go through years of bone crushing tiredness. Man, when the fatigue comes, it hits me like a wave. I literally go from being normal Clair to Zombie in minutes flat. I NEVER plan anything for Saturday afternoon anymore. The fatigue, once it sets in, is like a mist that keeps me a bit spaced out for a few days. Which brings me to….
You know when you walk into a room and can’t remember why you did? Yeah, chemo fog is like that but All. The. Time. I can stare listlessly out my window for ages and not notice time passing me by. When I am speaking, my sentences sometimes trail off because I can’t think where that particular conversational gem was going. I struggle to remember when I am supposed to be places. I have to write myself notes and put everything in a calendar otherwise I would just be a no show all over the place. I have to double check EVERYTHING. Did i turn the oven off? Is the car locked? Did I bring my phone/wallet/other essential thing? Man, it is frustrating as hell.
Yeah, I know, right. This sounds like a massive ‘First World White Girl’ problem but having fragile fingernails sucks balls. They just keep breaking. Which hurts. And peeling, which makes them more fragile. I have resorted to painting them, not for fashions sake, but just to have a thin veneer of something to help them stay on my fingers.
This is easy to manage but seriously, how can skin even get so dry? I am using a super duper lovely rich cream that normally would make me feel all grease monkey – but my skin is just drinking it in. If I miss a day, I can really notice.
Now, I know having been diagnosed with Cancer and dealing with all the shit that comes with it is a big deal. But I feel so emotionally tender right now. Like I cry a lot more about stuff that doesn’t really matter. Maybe this is PTSD or something? I dunno but I am super teary a lot these days.
Not being up for hard exercise
Remember how I was so enthusiastic about working out? Body Pump. Walking. Running. Yeah, well these days all I can manage is a walk with Remi everyday (in which I aim to do a stair climb and some lady pushups on the outdoor workout equipment) and some yoga. I just can’t muster up the energy to do a hard work out. It is frustrating as hell seeing my fancy new weight set gathering dust but it has to be on the back burner right now. You wait fancy weights, it will be ON once this chemo shit is done!!!
My, what a long list of shit things I have created!!! So yeah, as you can tell, chemo is no picnic. But we knew that already right? I guess the cumulative part of this chemo is starting to kick in. Wonder what new side effect will pop up.