Light at the end of the tunnel
**This is very long - just a warning before you start!**
So this could be a very long post! It has been just over 12 mths now since I was told I had breast cancer. The year has flown by in a whirlwind of appointments and treatment. I thought I should write down what has unfolded in the last 12 mths so I have some way to remember it all, because already some things are becoming a bit cloudy!
After the initial couple of days of body scans, xrays and MRIs I had a lumpectomy. That was very straight forward. Overnight in hospital, discharged the next day, and I made my hubby drive straight to macca's. I'm not normally one for eating Maccas, but for some reason I just needed some really salty hot chips! I was told I would need at least 4 weeks off of work, but was lucky to get the all clear from my surgeon after 2 ( I was mentally ready to go back after 1 - I hate being stuck at home/told I need rest!!)
The pathology from the lumpectomy told us that it was a grade 1, stage 3 tumour. HER2+ not hormone responsive. So as you all know that sets the path for the rest of your treatment. I was very lucky to only need the sentinel node to be removed as it was lighting up on the scans, but it came back all clear.
My GP (who I have been seeing for over 20 years now) referred me to the Burnside Breast clinic, which I am so grateful for. They run their practice with what they call a multidisciplinary team, so even though I have 1 primary doctor my case is reviewed by other specialists who also provide feedback on what they think may be the best course of treatment. It has been great! To know that all this collective knowledge has been going into devising a treatment plan to suit me. I have also been amazed at the level of communication between my specialist and my GP. If for any reason I have had to visit my GP, he has known exactly where I am up to in my treatment and it is just that added peace of mind, knowing that those communication channels are working. So my first piece of advice is to find a medical team who will support you and work with you. If you don’t feel comfortable seek another opinion. It is your life and your body! You need people around you who are going to lift you up.
My first lot of chemo was on the 6th of march. It was AC (Doxorubicin and Cyclophosphamide). That was to be 4 rounds, once every 3 weeks. That took a bit of getting my head around! I had had surgery to remove the cancer. In my mind I was cancer free. I know this is kind of a necessary evil, but the thought of putting these toxins in my body to kill off something that as far as the surgeon was concerned he had removed was a tough concept to get. But I intend on being around for a very long time yet and was going to do everything possible. My first side effect was the bright red wee! I went to the loo just after they changed the drip over from the Doxo to the Cyclophosphamide and I was already weeing red! No wonder my pubic hair fell out first!!! On the drive home my eyes became very swollen and itchy, a bit like a hay fever (which I don’t normally get) reaction. So we added and anti-histamine to the mix which seemed to fix it. I felt a bit crappy for the next few days – kind of like a hangover, but I didn’t get to go to the party first! I also found sleeping a challenge. I was so tired but just couldn’t sleep. But by Tuesday lunch time (treatment was always on a Friday) it was like someone had flicked a light switch and I would feel normal again.
Day 15 after my first treatment we had a function to go to. I was feeling really normal! I had my shower and thought I would blow dry my hair, while I still had it! I wasn’t sure how much longer it would be there! That night it started coming out L as I was blow-drying it I could see it just coming out in the brush. The next day I was with a girl friend who made comment that I was a bit quiet – I showed her my hair coming out if you just ran your fingers through it. The next day at work (I work outdoors teaching kids) my hair was everywhere. I was covered in it, the kids I was teaching were getting covered. It was gross! So we shaved it off! Best decision I made, but it meant I was starting to look like I had cancer.
The hair loss was also the part that was concerning my kids the most. We told the kids it was a good thing and that it meant the medicine was working. Once it had been shaved they were ok. I was still me. I still needed my coffee every morning before I could do anything, I just sometimes needed to rest a bit more.
While I’m on about the kids – how did they cope? We had our ups and downs. The pre conceived idea of cancer was a challenge for them. When you tell people you have cancer, unfortunately they go straight for the worst case scenario. It shouldn’t be like that. So to help the kids we armed them with a bit of knowledge and a few answers for questions. The first one was “your Mum has cancer” we told the kids they could answer that one with – “no, she had cancer, the doctor removed it, but now she needs to have chemo to stop it coming back” That seemed to work really well with our kids (12yr old daughter and 10yr old son). Our son bottled lots emotions up, and every now and then the flood gates would open and everything would come tumbling down, those days we would sit on the couch and cuddle. Our daughter knows too much! One of her first questions was “does this me I’ll get it as well?” That just broke my heart. We tried to be honest and answer all the questions they threw at us. Thankfully they had wonderful support at school and had other adults outside of our family they could also turn to for help – that made a huge difference.
Beanies became my friends and so did a few wraps that I found on ebay. The benefit of having no hair was how quick it was becoming to get ready in the morning!! Shower times were cut in half – no hair to was nothing to shave! I probably wasn’t really prepared to lose my nasal hair as well! Nobody really tells you about the fact that they help to stop your nose dripping like a tap! Don’t leave home without a tissue or 10! My eyebrows and eyelashes tried so hard to hang on – they really started to thin out, and by the end of my chemo were pretty depleted! Think I had 4 or 5 eyelashes that weren’t going to give in and about the same for my eyebrows. I think it was just after my 2nd dose of AC that a friend took me along to a LOOK GOOD, FEEL BETTER workshop. Amazing!! Lots of laughs, beautiful people, so supportive, and there I learnt how to draw on my eyebrows! A small thing, but made the world of difference to how I felt. A great way to spend a morning.
After the 4 cycles of AC I moved on to weekly doses of Paclitaxel and Herceptin (Herceptin every 3 weeks). This was a good thing. Although it meant travelling to town (1.5 hrs each way) every week, the treatment time was shorter, and side effects better! I wasn’t feeling nausea after the treatment like with the AC, just couldn’t sleep on the Friday night. Normally by the Saturday night I was all good for a huge sleep the Sunday would be a lay on the couch day, Monday back to work J
To pass the time during treatments I got a colouring in book and spoilt myself with some very nice Derwent pencils. I found it too hard to concentrate to read and even magazines I would read the same article 5 times! My Mum used to bring her crochet, my hubby would just flick through the mags there. I was very lucky to have a great hubby who would always take time off if I needed a driver, but Mum was my primary taxi driver. That was great being able to spend time with her. Just a crappy circumstances. If I felt up to it after treatment we would often go out for lunch or a quick stop at the shops. I seemed to have about an hour and a half after treatment where I still felt good and was happy to do stuff, but then I would be ready to go home. We always tried to be home by 3 so I could have an hours rest before the kids got off the school bus.
The 12 weeks of paclitaxel flew by. No sooner do you start your count down of treatments and you are into single figures and then 5 to go seems to come around quickly and then you are down to the last couple. It was a funny feeling when I got to the last round. I’m not sure what I was expecting. I think I thought I would be a bit more excited, but instead my Mum showed up to take me to town and I have burst into tears. I knew that a large part of my treatment was over, but I still had 9 months of Herceptin to go and radiation therapy to start. I felt deflated. Tired. Washed out. Over it. I think the thing that got me through that day was knowing I had 2 weeks of no treatment or appointments following it – 2 weeks can seem like a long time J
So, Radiation, 4 weeks (20 rounds) of driving to Adelaide every day (Mon – Fri) what a drag!! This is when I started to call on friends a bit more. The radiation centre at the RAH were great. They tried to make all my appointments in the middle of the day so it could fit in around dropping kids off and picking them up. Compared to Chemo, Rads were a walk in the park. The actual appointment only took about 15 mins, no pain, and no nausea. By about my 17th round my breast was starting to look a bit sunburnt, but wasn’t too bad. I found it was worse in the 2 weeks post treatment. It was sore to lay on that side, tender to touch. I went through heaps of calendula lotion!! I think it helped?! Most days I would drive myself. I had lots of friends offer, but I always found it hard when I had other people there. If there was a delay, which happened a couple of times, I didn’t want them being inconvenienced as well, I also felt like we had to have a conversation, sometimes I just didn’t want to talk. It probably sounds a bit selfish? But that’s just how I felt. With my Mum we would talk on the way to town, on the way home she would put on the ABC (!!) and I would just zone out – it was great! There was also a medical bus I could of used if need be. That would have picked me up and dropped me off at my home. I do think though, that if I lived any further from town I would of looking into staying at the cancer council lodge for a couple of nights. I’m still not sure if it’s the fatigue from the treatment, or if it’s from travelling to town every day that gets you. Everyone kept asking me how I was feeling – are you tired? Yep I was tired, but was it from treatment? Or keeping things running smoothly at home? Still trying to look after my hubby and kids? Travelling to town every day? Or the whole package!!
I work just during school terms, and my boss and co-workers have been an amazing support for me. They have been really flexible in letting me need whatever time off I need. Lucky for me that was only the days when I was having chemo. But come term 3 when I was due to start radiation we had a chat and decided it would be easier for all of us it I took the term off. By taking the whole term I was able to use my income protection. I am really glad I took that time off. It just would have been that one too many eggs to juggle I think. Something would of come crashing down!
The end of radiation was a great feeling! That was a night we did get the champagne out! Mind you I only needed 1 glass! 2 days later we packed the car and heading to the Grampians for a couple of nights. I know back in the car again, but that was ok, we were heading in the opposite direction! That was a really important chance for the kids, hubby and I to have some R & R. We hiked, slept, kids swam and just enjoyed being away from anything medical. I forgot to add in that my hair started growing back during radiation. I finished rads in October, by November I was no longer covering my head :) Now - January Ive had 3 haircuts!! Its thicker than it ever was and after growing back grey it is very dark brown again, with a couple of greys for good measure!
In October I saw my specialist again for a follow up mammogram. It was all clear J I go back to see him again in May 2016 now and then I will be an annual catch up. I still have 6 Rounds of Herceptin to go, but can see the light at the end of the tunnel. Thankfully my local hospital can administer the Herceptin so less trips to town, and I am not suffering from any side effects, it is just an inconvenience and reminder of what I have been through. I do still need to go to town every 9 wks for a heart scan though and just to touch base with my oncologist.
I don’t think I will be the same as I was before all this. I was one of those – that won’t happen to me – kind of people. No history of cancer (any sort) in my family. Healthy, fit, young. It was the last thing I was looking for. It really has been an eye opener. So many things have changed. Especially relationships I had with others. Some have strengthened, some have evolved from just being acquaintances and some unfortunately have gone the other way. Luckily the ones that matter most have all improved, especially the relationship between my hubby and I. Life gets busy when you’re both working, 2 kids, sporting commitments, a house to pay for and you do seem to be ships in the night. Breast cancer made us re-evaluate our priorities and make an effort to just spend time together. No kids, no distractions just us. It has been great.
It has made me wary of some people. I had “friends” who felt it was their duty to tell the world what was happening with me. To an extent that didn’t worry me, but they would forget about the ripple effect – you tell 1 person, who tells another, who tells another and next thing my dad is getting bailed up in the main street of their tiny town, where mum and him were yet to let people know. I hated being the talking point especially in the early days. It was probably because I could never understand how it would possibly come up in a normal conversation, other than for someone to say “oh, have your heard? Amy has breast cancer!” it just doesn’t come up normally! I am probably becoming more accepting of it, but I still watch what I say around certain people. Others have been my rocks. The shoulder to cry on when everything gets too much. The taxi when you need one, the babysitter when your chemo runs late, and the one who drags you out for lunch because she’s bored and wants company! I am blessed to have some beautiful people to support me.
I realise I had a pretty easy time of it all. I know of a lot more people going thru the crap that is cancer at the moment, and every time I think how lucky we were to find the lump early. And it was just luck. I was never 1 for doing a self-check every month. My lump just happened to be somewhere easy to feel. My body amazed me at how well to coped will all the treatment, but at the same time my trust in it has gone. I never felt sick, before during or after. Before diagnosis I was running 5km each day, was probably the fittest I have been for 15 years. I couldn’t and still can’t understand how you can’t notice something like cancer. How you can feel so healthy, yet you have this horrible thing in your system. Just last week I needed to see my GP for a pap smear and I mentioned that my armpit and side of boob where the lymph node had been removed was sore. So it was straight of the specialist for an ultrasound. Wow did that stir up some emotions! We were sure it would be nothing (I had just strained the scar tissue they think) but I couldn’t help thinking that last time I felt fine as well. A friend said listen to your gut – I don’t feel that I can trust my gut anymore. I guess that is just something well all learn to live with.
So I am counting down the Herceptin treatments now, and crossing each one off. I know it will go quickly. My final on is due to be on the 19th of May and to “celebrate” I will be going on an 80km trek over 2 days on the 20th and 21st! Crazy? Maybe! It has certainly been a rollercoaster, but I can see the light at the end of the tunnel now and can feel it slowing down (thank goodness). I wish everyone else on this rollercoaster a safe ride. I could never call it a journey! May you make it to the end in one piece. May you always have hope, strength and belief that anything is possible.
Amy
