I met Amanda Bailey last year at Look Good Feel Better. She had just been diagnosed with BC and we went through chemo at the same time. She also happened to live one street over from me and we have become good friends. She has a wonderful family with the most gorgeous twin boys. Amanda has written up some of her experiences, insights and super helpful hints. Thanks so much!
What would I say to someone going through breast cancer now?
Everyone is different in the way that they react to cancer and it’s treatment. In saying that though… this is what I can say based on MY experience.
I am 38 years old, an at home mum to 3 year old twin boys who were still 2 when I discovered I had breast cancer.
Has cancer changed me?
No, not in my general outlook on life. I have already had occasions in my life when I have needed to reach out and rely on my family and friends to help me through. I learned from earlier difficult experiences that having family and friends who care about you, around you is very important, and like having everyone know exactly what is going on. It makes things easier.
I appreciate living a happy, relatively quiet life. I don’t take that for granted.
So no, I haven’t changed, I feel like I was a strong positive person before cancer, and I am still that same person Perhaps I have the odd bit of ‘cancer baggage’ that appears now and then – like worrying about caring for my children when I get sick, where as before it was an annoyance and not a worry. My ideas about what is important are still the same.
I think that some people start out in a very different place when they are confronted with cancer, and so for them they change their ideas of what happiness is and what it is they really want out of life.
For me, I have determination, a sense of humour, and a lot of love from those around me behind me, and that is what it takes for me to deal with challenging situations such as this.
Crap things happen to nice people, and I consider myself, my family, and my friends, all to be nice people… and well… cancer is crap.
What have I learned?
Quite a lot regarding how I experienced cancer and it’s treatment… I will call it ‘the good, the bad and the interesting.’
Finding out your have cancer, does not feel in anyway good, in any way shape or form. In fact, it terrifies, and leaves you in a bit of an emotional worry filled mess (I needed to demand some good anti-anxiety medication from my GP – rescue remedy was NOT a solution for me).
But…. I can look back now on myself on Sunday May 29th 2011, watching tv that evening, lying on the couch, and know that I was damn lucky to feel that small lump. It was a GOOD thing to find it, to have it checked out, and now to have it gone, surgically removed, and good ridance!
The bad was the moment I was told I had cancer, and the days or weeks leading up to it where it as a mere possiblility is a dark and scary thing. Worrying about my children, my loved ones, my family. Wondering how bad it was. Facts can help. And having facts behind you when you talk to your family and friends makes it easier to explain what is happening so that they don’t have to ask difficult questions.
In fact, contrary to my worries of dying of cancer – based mainly on bad 80’s movies and television dramas – I didn’t, haven’t, and at this stage, I don’t seem very likely to, be dying – at least no faster than I was before I had it. My 2cm cancer – which I had named “Birtha”, as in ‘that ‘b’ Birtha – was surgically removed by my specialist. I have now undergone 6 months of chemotherapy followed by 6 weeks of radiotherapy, to make sure that she doesn’t come back, or any of her friends.
My cancer hadn’t spread according to CT scans, etc, but 2 cancer cells were found in one of the 6 lymph nodes they took during surgery. So there was the possiblity that there were microscopic somethings floating around waiting to land somewhere in my body, and spread the cancer. So based on that information, my age, cancer type, etc, they decided to pretty much blitz it…. me.
I only actually vomitted once when I got confused with the many medications and doses, and didn’t take some of my meds. I had a pretty crap time by all accounts, but was constantly supported by my lovely oncology nurse, my GP, and was given medications to ease my side effects, and the chance to change these medications if they were not working for me.
Also, I must say that it took me just about all of my chemo treatments to figure out how to ‘do’ chemo – to read my body’s symptoms, decipher what they meant, what to do about it, and who to pester until they thought of someway to make it easier for me. I had accepted that chemo would be awful… and it was, BUT it was made easier when I could read my body’s symptoms and could ask, firmly at times, for help.
Interpreting the ‘chemo jargon’ of symptoms was also something I learnt. I was told I could get nausea, but to me that meant having to run to the toilet and vomit or at least come quite close to it. In fact, for me, it turned out that nausea was feeling ‘not quite right’… that feeling you get when you get up too early in the morning and don’t want to eat, and feel quite yuck. And when your mouth goes completely dry and stays that way accompanying those symptoms.
There were quite a few symptoms like that, you re-read the possible simptoms and their descriptions and really think if what you are feeling is somehow similar.
And, it also took me a while to realise that my low blood counts would correlate directly to my moods, or rather that when I was feeling really low it turned out that my blood count was too.
2 hours or more of alone time sitting in a lazy boy chair reading a book or relaxing – that’s what going to the hospital to get my chemo meant to me. That was lovely. I got made milos, etc, and sometimes got a free lunch as well.
OK, so there isn’t much that is enjoyable about chemo, except that if you take it day by day you CAN get through it. And if you are assertive when you feel yourself going down hill, you can get help from your oncology nurse, your doctors, the cancer society, social workers, and friends and family too. I even had a wonderful chemist who would drop my medication to my house after work!!! It is amazing how people will help you…. if you ask for it.
ACCEPT ALL OFFERS OF HELP!!!! I mean it. Refusing is not an option. YES, you would love a meal, baking, baby sitters, house cleaners, to be taken out for a cup of tea if you are up to it, ANYTHING that helps make life NORMAL again for a little bit, or eases the stresses and burdens of running a household, etc.
Everything else… Chemo sucks, of course it does. But it does finish!!!
AC was my first 3 months and I was nauseas until they changed my medicaton, and even then the nausea came and went. I worried about looking after my 3 year old boys when I just wanted to sleep or curl into a ball on the couch. This was my big low… admiting that I couldn’t look after my boys all by myself (my partner had to go on location for work for 8 weeks in the middle of my chemos which made things a little more tricky) and also that I was so sick that I actually didn’t WANT to look after them – that broke my heart. I love my boys and not ‘wanting’ to care for them had never crossed my mind before. Luckily I had a sister who is an organisational genius, and so many friends and family were rostered into providing meals, or their time to check on me, or help with the boys, and a wonderful mother in law who stayed with us for the first 3 weeks of Justin’s work absence, and of course my own fantastic Mum who was constantly re-jigging her work schedule to pick up/drop off the boys from kindy, etc, and made many many meals, and gave me the odd councelling session on the phone too! In the end, after said sister gave me a sensible yet stern talking to, I paid for a nanny to look after the boys every week day from 7am so I could rest, or get out, and get better. The boys enjoyed all the extra attention, and I got through the chemo.
My second chemo was paclitaxel. I wondered if it was working at first… I felt so good compared to the first chemo. Apparently it WAS working, because towards the end of the 3 months, my fingernails really hurt and my fingertips went numb. Not to mention the colour of my fingernails! Yeuch!! Yay, for bright coloured nail polish!!! Phew!
I also found that I would feel quite low as the treatment went on which is not normal for me – I eventually figured out that it correlated to my low blood counts. And it really helped when Justin returned home from working on location of course. That was great.
Amazing as it sounds, I almost looked forward to getting a neutropenic fever and being hospitalised for a few days. It was like a mini vacation. It sounds wrong, but when I was feeling really sick I didn’t want to do anything but curl up in a ball, so being in hospital was great. I could lay there and do nothing but relax and get better. They monitored my blood pressure, did blood tests, and got me my medication when I needed it, so I didn’t have to remember my many, many pills 4 times a day. Food arrived without me cooking it, and it was usually pretty good. If you paid for TV you could watch sky movies in your hospital bed which was great. And best of all, you didn’t have to get up at 5.30 in the morning because your 3 year olds were awake and needed taking care of…. you could sleep in till 8am!!!! No Kindy, no playgroups, no tantrums, just quiet.
Well, I suppose waiting 8 hours or so for a bed in emergency while they processed you could be called bad, and a few needles could be bad, but really, when you are sick, it is nice to be somewhere where someone other than yourself is looking after you. You could be sharing a room with noisy snorers, coughers, or talkers, etc, but that’s about it.
I could usually tell when I was due for hospital, although generally it was on the second or third week of every AC chemo cycle, often about 3 days after I started feeling terrible or like I was getting the flu. If it was during the day or early evening (which happened only once) I could get someone to mind the boys while someone else took me in to hospital. But generally I got a 38 degree + temperature around midnight or 3 am in the morning, so while my boys slept, and Justin mumbled whether I wanted him to get up, I rang an ambulance and got my bag of things together – clothes, shoes, soap, toothpaste, toothbrush, book, pen, diary organiser, cell phone charger, cell phone. I was usually in my pjs, slippers and a cosy dressing gown, so I just stayed that way for my ride in to hospital.
Losing your Hair….
Saving money on shampoo, conditioner, hair dye, etc. Packing lite for hospital stays. Easy care. Being able to moisturise your whole head! Lol.
A free wig from the government. I call mine Wilma, and in truth have only worn her about 5 times especially for evenings out, weddings, etc. The rest of the time I didn’t care if people knew I had been dealing with cancer. I was comfortable in my beanies, etc.
I eventually got really annoyed with ‘moulting’ all over my clothes and beanies, despite getting my hair cut shorter, so I got it cut off and shaved – my lovely neighbour had all the gear for haircuts, etc. Lovely lady.
Also, having to draw on eyebrows every day can be a pain when they finally go, but going to ‘Look Good Feel Better’ not only gave me all the make up I could use, but also gave me eyebrow stuff and showed me how to apply it realistically! Yay!
I enjoyed having my hair grow back and celebrated by dying it the brightest of bright pinks!! Very liberating. I figured that people were already staring at my hardly there, and terribly grey, hair, so I might as well give them something to stare out. It was fun! And I am definitely enjoying watching as the pink fades and grows out. It looks like a propper hair cut now!
And I feel good. About everything.
And it was also through ‘Look Good, Feel Better’ that I met lovely Andrea who was going through a second lot of breast cancer. We swapped numbers and emails, and she was able to walk me through chemo and all that followed! She has been a great support, and person to talk to outside of family and friends who were too close to talk about EVERYTHING with. It was also her who asked me to type this article. ….although I am sure that she was not expecting it to be quite so long.