Feet don't fail me now

I've been trying to write a new post for the last few weeks, but after a while every attempt has ended up just saying FUCK CANCER FUCK CANCER FUCK CANCER. Health wise I'm fine, but in the last few weeks I have met with a reconstructive surgeon which was unexpectedly depressing, I found out that a friend was back in hospital and then that her breast cancer had spread to her brain, and now today I have learnt that another breast cancer friend has passed away. 

These friends are people I have only met through Instagram and Facebook. I've never met them in real life, never spoken to them on the phone, and I don't even live in the same country as any of them, but they are just as important as any of my other friends. I know some people don't understand this, or how news like this can devastate me for days, but we have a connection through this horrible disease that we just can't share with anyone else. 

Kim was the first breast cancer warrior I 'met' online, when I searched #mastectomy on Instagram. She seemed so strong and badass (a term I have never used to describe any one, but is perfect for her). Just days after getting out of hospital she had posted a picture of her drains tucked up under her top so she could go to her daughters school play. Through her I discovered a whole online community of breast cancer fighters. From their Instagram pictures I learnt more about my upcoming mastectomy, chemo, and radiation than from any of the information the doctors and nurses gave me. I was also invited to a private cancer group on Facebook which has been the most incredible resource and support for me. I knew that Kim's cancer had returned and in the last few weeks I considered asking mutual friends if they knew how she was, but I think I was too scared to find out. This morning I learnt of her passing and later today found out that she has donated her body to science and will not be having a funeral. I think this is such a beautiful, admirable, and selfless thing to do, to chose, even in death, to put others first and to be more interested in helping others instead of memorialising yourself.

Then there's my beautiful friend Mariana. A few weeks ago I discovered she was in hospital and not well. All day I kept checking back for an update before learning that her cancer had spread to her skin and lymph nodes. A few days later she wrote that her cancer was now in her brain. I was so gutted by this news that for days I could hardly think straight. The last time I tried writing this post was about a week ago and I ended up bursting into tears trying to write about her, so I'll stop here to avoid doing it again. 

As for the meeting with my reconstructive surgeon, well it seems insignificant now. Basically, the surgeon told me that the best option for someone my age is a regular implant but, because I have had radiation treatment, I'm not a candidate for this so my other two options which involve cutting skin and muscle from either my stomach or back and making a sort of patch work boob. Not ideal but today I don't particularly care. I'm still annoyed that I didn't have a bilateral mastectomy in the first place. If I had, reconstruction wouldn't be so important. I also get angry when I think about the cost of these so called 'cosmetic' procedures (over $10,000 for one, almost $30,000 for the other. And that's with Medicare and private health insurance) but as Kim once said 'as long as I'm here to bitch about it, I'm ok'

Rest In Peace Kim x

Like being hit by a truck. Literally.

Quite often when I read or hear fellow cancer patience or survivors worrying about cancer coming back and ending their lives, I think to myself that yes, we have/had cancer and yes, it could kill us, but so could a car accident, so there's no point in wasting time worrying about it. Well, yesterday I was violently reminded of this fact when driving along the freeway, the same freeway I take every time I go to the hospital.

It was 8:15 in the morning and little birdie and I were driving to my sisters house as we do every Friday, when all of a sudden, i heard a crash and lost control of my car. I looked to my right and saw the grill of a truck a second before it hit me. As it did my head hit the window. Next I saw cars coming towards me as my car was spinning around. I remember thinking 'turn into the skid', something my dad has always told me, so that was exactly what i did. I managed to get control of the car and pulled into the emergency lane next to the median strip. I grabbed my phone, dialled emergency, and turned to see little birdie happily playing in her car seat as if nothing had happened.

I had no idea where the truck went or exactly what happened but was lucky enough that another truck driver who witnessed the whole thing pulled over immediately and ran across three lanes of traffic to make sure I was ok. He entertained little birdie while we waited for the ambulance and police and was able to tell us what he had seen. Apparently the truck had clipped my bumper, spun my car around in front of his, slammed into me and pushed my car along the freeway for 10-20 meters before I spun around away from the truck and eventually pulled over. The truck hadn't stopped or even slowed down so this all happened at 110k/hr. He couldn't believe that little birdie and I were unharmed, that my car wasn't crushed, and that i had managed to get control of the car and pull over, he even asked if i had taken a defensive driving course. He also told me that if I had put my breaks on the truck would have gone over the top of me. The whole right hand side of my car was damaged, but I was able to easily open my door and get out. The left had side, where little birdie was, was untouched. The paramedics arrived first but were concerned that we were in a dangerous spot being in the middle of the freeway so they put us in the ambulance to drive to the other side of the road where it was safer. This was the first time that little birdie got upset. She cried and said 'I don't want to go in the ambulance, I want to go to my cousins'. Soon after, the police arrived. While the paramedics checked little birdie and I out the police got a statement from the witness. Little Birdie and I were fine and the policeman came back to speak to us. He told me that from what the witness had told him we were lucky to be alive. He said he had seen a lot worse from a lot less. He organised for my car to be towed and said it was still unsafe to stay where we were so organised for the ambulance to drop us at my sisters and said he would come see me later in the day to get my statement. He also told me that they had found the driver a few suburbs away.

The police came to see me later in the day. He started to tell me that he spoke to the truck driver who seemed to be a 'good guy' with a clean driving record, before stopping himself and saying he needed to get my statement first. He asked me to tell him in my own word what had happened. Next he had some more specific questions that he had to ask me, based on the other drivers statement, which I could refuse to answer if I wished. He started asking me if I remembered seeing a red car, if i had overtaken the red car, if I remembered seeing the truck, if i had tried to over take the truck, and I began worrying that the truck driver had tried to say it was my fault. After I finished answering his questions he told me what the other driver had said. To my relief he hadn't said I had done anything wrong. He hadn't even seen my car. He told the police that he had overtaken the red car himself and shortly after had felt a small bump. He looked in his mirror to see if he had hit something but there was nothing there (that would be because my car was being pushed along in front of him), and the next time he looked in his mirror he saw my car spinning away from him. He did pull over at the end of the freeway and called the accident in, but at that point I hadn't reported it so he was told to keep driving. Because neither of us know exactly what caused the accident, and neither did the witness, he won't be charged and the police report will be inconclusive, which could effect my insurance claim but I'm not going to worry about that right now.

I've replayed the accident in my head constantly since it happened. Flashes of it are extremely vivid. The noise of the truck hitting my car. Its shiny grill coming towards me. The sound of my head hitting the window. The cars coming towards me. Then little birdies blissfully innocent face when it was all over. I may be having a pretty spectacular run of misfortune this year, cancer, the pregnancy, my husbands seizure, being hit by a fucking truck! But I'm also extremely lucky. What would have happened if I had had my window open. What if an airbag had deployed. What if i hadn't been able to gain control of the car. What if little birdie had undone her carseat belt before the accident? I have to stop myself there.

I won't know what's happening to my car until next week. It is apparently borderline so it could be written off but for now I couldn't care less. I just know that little birdie and I are extremely lucky to be sitting at home with my wonderful husband, so I'm not going to worry about anything else.

Little birdie asleep on her daddy at the end of the day

One week post radiation, two months post chemo.

It's been a week since finishing radiation and I've been, well, tired! I've had a persistent cold for about three weeks now (thank you chemo and radiation) and have been pretty worn out. I've also been dealing with the slightly unpleasant aftermath of Radiation for the last five days. 

I was very lucky that I had hardly any reaction to the radiation while I was going through treatment. I looked a little sunburnt in some spots but that was pretty much it. Two days before finishing, the nurse gave me a stronger cream to use under my arm as the skin was going quite dark and she thought it might break. I was happy to make it through my remaining sessions without this happening but sure enough, I started peeling the afternoon of my last treatment. Over a week later my whole underarm is still peeling and raw. I went back to the hospital on Monday to have the nurse look at it and she gave me an even stronger cream and special gauze to use, but it hasn't seemed to improve so far. On the plus side though, I think my mastectomy scar is looking flatter and less noticeable since finishing radiation. At the end of this post I have included some progress photos so look away if you don't want to see my lopsided chest and scar. As usual I have a photo of little birdie as a buffer just in case. 

So, after having radiation every weekday for five weeks, it was nice to have almost a weeks break from visiting the hospital, but that is over now. Today I had my heart scan and tomorrow I see my oncologist and have my herceptin infusion. I was pretty nervous for my heart scan and wasn't expecting a very good result, so I was very please to find out my heart has pretty much gone back to normal since resuming my herceptin. Yippee! That means I should still be on track to finish treatment in April. 

Today also marks two months since finishing chemo, but I still have one lingering side effect. My finger nails are all bruised and lifting from my nail beds. I'm keeping them painted as much as possible so it's not too obvious. My right hand is the worst as all my nails have lifted to at least half way up my nail bed. One side effect that has stopped now is my hair loss, which I'm very happy about. Every day I can see more and more hair on my head, and I don't think it will be long till I can go out without some sort of headscarf/hat/beanie on. For now it's just a bit thin on top though. 

And now a slightly happier photo:

xxM

Almost done?

I'm coming to the end of my treatment and I don't quite know how to feel. I've had my mastectomy, finished chemo, and only have two radiation sessions to go, but I'll continue my Herceptin infusion every three weeks till April, followed by my reconstructive surgery at some point. Once radiation is over, there's no final scan, no last check to make sure I really am cancer free. There are apparently physical checks that I will have to continue, as well as check ups with my surgeon and oncologists every few months, but nothing to really mark the end of all this. I had cancer. It was removed when I had my mastectomy. The rest of my treatment has been a preventative measure. But even though I have explained this to family and friends plenty of times over these last eight months, I don't feel like I can definitively say I HAD cancer yet. My surgery felt like the beginning of my cancer journey, not the end. 

Last week I met with a Clinical Geneticist to discuss and carry out genetic testing to see if I have the breast cancer (BRCA1/2) genes. I was lucky enough to qualify for funding due to my age so I didn't have to pay the $2500+ for the testing, which was a relief. The results take three to four months to arrive. If I do have either gene I will have a higher risk of recurrent Breast Cancer and Ovarian/Fallopian Tube Cancer, so it is recomended that i have further risk-reducing surgeries. I'm obviously hoping the results will come back negative and maybe then I will feel confident saying I HAD cancer.

Chemo is over, Radiation has begun, but more importantly my husband is awesome!

Things are good.

It's been almost a month since my last post, which makes me a very slack blogger, but I've been busy enjoying being finished with chemo.

My last chemo was a breeze. My husband came with me and it seemed to go so quickly that we forgot to take a photo while we were there. The photo below was taken outside the lifts as we were leaving. I had a few side effects from the chemo, mainly loss of taste and that horrible taste in my mouth which lasted for over a week and nearly drove me crazy, but knowing I'd never have to experience it again did help. 

Post chemo kiss

Plenty of other things have happened too. I've had another heart scan which showed my medication is working and my heart improving, so I have also resumed my herceptin. I have started radiation and had seven treatments so far. My hair has started to grow back, admittedly very slowly, on my head at least. I was finally able to go to the dentist, which I have never been so excited about, as I lost two fillings just before starting and it felt as though chemo was eroding the rest of my teeth away. Two visits and six fillings later I was feeling much better and was most importantly ready for my surprise weekend away. 

I've mentioned before that my husband was planning a weekend away to celebrate my birthday and also the end of chemo, and I knew we were going to the Blue Mountains, but I didn't know where we were staying. We headed off last Friday, after saying goodbye to our little birdie and my parents who were staying at our place to look after her, and after driving for two hours we pulled into Katoomba. As we drove down the main street the view of the mountains was so beautiful that I took a photo through the windscreen of the car. I imagined that we would be staying in a little cottage or Bed and Breakfast, and when we saw the sign for Lilianfels Resort, which is the most beautiful boutique five star hotel in the Blue Mountains, my first thought was 'Wow. That's Lilianfels.' Shortly followed by 'We couldn't be staying there, could we? There's no way he would have booked Lilianfels, is there?' and then we kept driving. But as we turned the corner I saw the main entrance to Lilianfels and my husband put the blinker on. As we pulled in to the drive way I couldn't stop my eyes from welling up, as they are now just thinking about it. I said to him 'you didn't and he just smiled and said 'well I wouldn't be driving in here if I hadn't.' We drove up the long drive way, past the beautiful gardens, the outdoor pool, and the hatted restaurant, to the hotel. I stayed in the car while my husband went inside to check us in as he didn't want me to hear any of the other surprises he had planned for me. When he returned to the car he took me up to our room, an executive suite with incredible views of the mountains (a billion times better than the view from the street coming into town), and then told me we were having dinner at Darleys, the hatted restaurant we had driven past on the way in.

Our beautiful room

Once we had settled in, we went for a walk down to the most famous spot in the Blue Mountains, The Three Sisters. It was late afternoon so the whole area had a beautiful golden glow. As the sun began to set and the temperature drop, we headed back to the hotel lounge for drinks before getting ready for dinner. Darleys was incredible! The restaurant is in the original Lilianfels house that was built in the late 1800's and was just beautiful. The food, the wine, the staff, everything was just perfect. It was the best meal either of us have ever had!

Dinner at Darley's

The Three Sisters

The next day started with an early (delicious) buffet breakfast in the hotel's Orangerie, followed by a rest in our hotel room, and then another surprise: a delux High Tea in the hotel lounge. Looking around at the incredible hotel and discussing how good our dinner was the night before, my husband said to me 'I mightn't say much or make a big deal of what you are going through, but I hope all this shows you how much I appreciate and admire you.'

High Tea and my two glasses of champagne

After high tea we walked into the town centre to have a look around and ended up 'bumping into' some friends, another surprise organised by my husband. That night we them met for dinner and I was surprised yet again when we walked into the restaurant to see another couple of our closest friends sitting at the table. Dinner was once again delicious, and the desert was especially wonderful. 

Dinner at Pins

The next day was Sunday, our last day there, and it began with another lovely breakfast in the Orangerie where my husband told me that he had enjoyed our high tea the day before so much, that he had decided to book another one for that morning. We returned to our room to get our things packed and there was a feint knock at the door followed by a child's voice. My husband asked me what it was and I told him it must have been the room next door but he told me to check just incase. So I opened the door, only to see my mum and little birdie standing there, very excited. My husbands final surprise was to have my parents and our little birdie join us for high tea on our last morning away. Little birdie was extremely excited to see us both, as we were to see her, and I think she enjoyed her special children's high tea even more than we all enjoyed ours!

High Tea with Little Birdie

So, as you can hopefully tell, it was an absolutely wonderful and unforgettable weekend, something both my husband and I were in great need of, and I am a very lucky woman to have such a thoughtful, generous, loving husband. 

Last chemo today!

Today is the day i finally finish chemo. In less than 10 hours i will have completed my sixth round, my last one, and I'm just a little excited. Things have gotten better since my last post, but it did take a while.

First of all, at my last chemo I had to stop one of my drugs, herceptin, as it was causing me problems with my heart. A few days before chemo I had a routine heart scan. When I saw my oncologist on the day of chemo, I was told that my heart function had gone from 61% down to 49%. That was after only 4 doses. 4 of a planned 18. Needless to say i was quite unsettled by this, but my doctor assured me that it was a common side effect and that it had been picked up early, before it could do any real damage. He told me I would need to cease taking the herceptin for the next two cycles and see a cardiologist who would prescribe me medication to support my heart for the rest of my treatment. So last week I went off to see a cardiologist. He prescribed me blood pressure and what he alarmingly referred to as 'heart failure' medication, as well as organising another heart scan for the end of the month to see how things are progressing. 

My  wonderful dad and I at chemo number 5

That very night, 7 days after my husband's seizure and emergency hospital stay, I had to spend a night in the emergency department myself. The day before, little birdie wasn't quite herself and had a bit of a fever. The next day she was covered in a red rash so I took her to the doctor and was told she had a virus and that it would sort itself out. That afternoon I was exhausted and freezing, but didn't think much if it until i was bathing her and started to feel hot and nauseous. Once I put her to bed I took my temperature and it was 38.7. I checked my chemo paperwork and confirmed that if I had a fever of 38.2 or higher I would have to go straight to the hospital. I stripped off my beanie and jumper and gave myself some time to cool down, but half an hour later my temperature was still the same so I drove myself to the hospital. When I got there my temperature was 38.9 and I was immediately admitted, put on a drip, given blood tests, a urine test, and even a chest X-ray (while still in bed. It was very cool) and then given fluids and antibiotics through the drip. Thankfully my blood results looked good and even though my immune system was low, because i was 13 days out from chemo, it wasn't at a dangerous level. Overnight I woke up shaking and had a temperature of 39 degrees but by the morning i was feeling fine. After a visit from my sister, and a few discussions with the nurses, the oncologist came and saw me. The first thing I told him was that it was my daughters 2nd birthday the following day and I had to be home when she woke up, so luckily enough, he prescribed me some antibiotics and had me discharged just before midday. Finally, things were starting to look up for us.

Finally home with little birdie!

Little birdies birthday was wonderful! My husband had the day off work. She opened all her presents in bed with us in the morning and then we had birthday pancakes. They were my first attempt at homemade pancakes and were pretty horrible, but she didn't seem to care. We spent the day playing with her new toys, had a picnic in the sun in our backyard, and in the afternoon my sister and her kids came over for cake.

Little birdie on her Birthday

On Sunday we had a few people over for her birthday party and she had an absolute ball. My husband and I also had a great day and were super proud to have managed to put on a party for her despite us both being in hospital in the ten days leading up to it. 

Little birdie at her party

This week has been full of doctors appointments but this time things are going well. Two days ago I had my radiation planning appointment and was given my start date, along with 4 new teeny, tiny, tattoos. I start in three weeks time, on July 31st and should have my last treatment on September 3rd. We will definitely be having a nice big party to celebrate after that!

Yesterday we went and saw my husbands neurologist and we got some more good news. When we left hospital after his seizure he was told he was not allowed to drive, possibly for six months, but the neurologist told us that seeing as he has only ever had seizures while asleep, and because he is back on his medication, he is now allowed to drive. This was a massive relief for both of us, especially seeing as he works an hour away from home, and because he is taking me on a surprise weekend away for my birthday and didn't particularly want me driving myself. 

So, it's been a pretty crazy last few weeks, hang on, make that months, but I'm excited that one massive part of my treatment will be finishing today. I'm hoping that knowing that I haven't got any more chemo treatments to go through will make any side effects I suffer this time bearable  and I'm also looking forward to celebrating my birthday before I have to worry about starting radiation. 

And now for some entertaining moments courtesy of little birdie:

1- For the week or so leading up to her birthday, little birdie had been very excited. Anytime she saw me making decorations, or even just a picture of a cake, she would start smiling and pointing, would  sing happy birthday, and tell us about how she was going to have a birthday cake with candles on it and she was going to blow out. 

2- When asking her who she wanted to come to her party, she would start by listing her cousins, aunties and uncles, friends... And her cousins pet cat smokey! She did it every single time. 

3- When dropping her at my sister in laws the other day, she saw me put my bag and and started crying. She started saying 'not yet, not yet' and I told her I had to go but she was staying at her aunties. As soon as this sunk in she stopped crying and said ok, and went back outside and continued playing with her cousins. She didn't care at all that I was going, she just didn't want to go with home!

4- Little birdie has also been pretty entertaining first thing in the morning. As soon as she wakes up she is on! She chats away in her cot. Sings songs, most of which she makes up herself. Looks out the window and yells at the birds. Calls out saying 'Mummy. Daddy. Where are you? Get up! Get up! Wake uuup!' And then she starts chatting away to her toys. As soon as I go in she tells me all about what she has been doing, asks me to carry her toys and take her to the 'younge' (lounge) and we have breakfast.


xx

Give us a break!

So I think it's fair to say that I am a pretty positive person. Not in an annoying, in your face way, but I never really think 'why me?', I just get on with things. Well this week, I've seriously been tested. 

***disclaimer: this post contains occasional coarse language and feeling sorry for myself. Only read on if you want to join my pity party. Don't worry though, it's not a long one. ***

I've mentioned on here previously that my husband and I have been through some pretty difficult times. Well this month celebrated five years since his brain tumour and subsequent surgery, and it was kind of sad looking back at those five years and to see everything we have gone through, and are still going through. My husbands brain tumour, surgery, and subsequent seizures. The loss of his mum to short battle with cancer. The loss of his dad six months later. And now, my cancer. All in just five years. On the obvious up side, we have also been lucky enough to have fallen pregnant and had our incredible little birdie, who amazes and entertains us everyday, so it obviously hasn't been all bad. 

But this week we were reminded all too clearly of the most terrifying experience of the last five years. At 12:55am Friday morning, I was awoken by a quick tap on the shoulder from my husband, only to open my eyes and see him going into a full blown, fucking seizure. I managed to stay calm, call paramedics, call our wonderful neighbour who came straight over, keep my husband on his side and safe on the bed, all while watching him thrash around, foaming at the mouth, with his eyes wide, bloodshot, and terrified. Luckily, the seisure only went for about 5 minutes, and by the time the ambulance arrives, 19 minutes after I first called, he had just started to come to. He was given oxygen and couldnt really talk, but was eventually able to walk, aided, to the ambulance. From the ambulance I called (and woke) my sister who headed straight over at 2am to relieve my neighbour, and not only stayed the night, but took little birdie home with her the next morning. Sitting in the ambulance after I had done everything I needed to do was the first chance I had to actually think about what was happening, and the first thing I thought was 'You've got to be fucking kidding me! I'm riding in an ambulance, with no hair, one boob, and a very visible scar thanks to the fact im pretty much in my pyjamas, and I'm not even the one who needs treatment.' They say that you're only given as much as you can handle, and yes, I can handle this, but give us a fucking break. In the words of a great friend who just happened to text me while I was still at the hospital, 'doesn't the universe know what we've been through?!'

At the hospital my husband was given his anti-seizure medication, which he had been taking for the last five years but stopped six months ago (obviously a bad idea). He was given various blood tests and a ct scan, all of which came back clear, and was monitored for four hours to make sure he didn't have another seizure, and then we were sent home. We both spent the weekend resting and apart from being quite swollen, tired, and sore from the sheer physicality of the seizure, he is fine. And so am I. 

I am back to my positive self now. Yes it's a horrible thing that we've had to experience again, but we were also pretty lucky. Lucky that the seizure happened at home, in bed, with me, and not while my husband was at work, or driving, or any number of other alternatives. Lucky that it was unwitnessed by little birdie. Lucky that it was minor compared to the one five years ago. One that went for almost 30 minutes and after which he spent 2 days in intensive care, 5 days in hospital total. Lucky that in the 6 months that he was off the medication he lost over 20 kilo's and became fitter and healthier than I have ever known him. And lucky that even though we don't have his incredible parents around to help us this time, we still have wonderful family and friends who dropped everything to be there for us and little birdie all weekend. So I guess, all in all, that does make us very lucky.