Hi Julie, My heart goes out to you. At the moment I'm just finished radiation (after surgery then chemo). None of it was fun, and the side-effects are serious, but they tell me, statistically, it will give me a longer life. All I can say from my experience is to get all the information you can about treatment options. Ask your health professionals to quantiify how much longer you are likely to live if you take the treatment they are offering. If possible, consult another professional for a second opinion, and be sure to read the Cancer Council's phamplet on complimenatary therapies. Whether you accept any treatment offered depends on a whole host of personal factors such as age, general state of health, family and relationships. Best advice I can give is take your time - don't be rushed into anything. There's an excellent book by Professor John Boyages called "Breast Cancer - Taking Control" that I recommend you get your hands on if possible. All the best for your future decisions. Alison
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Introduction Ever since I was diagnosed with breast cancer, I keep hearing about the various cancer “journeys” that I and many others have supposedly embarked on. But I don’t think any of us ever signed up for such a journey. It’s not like we received some glossy brochures in the mail, or were seduced by some clever online advertising and thought “Ooh, let’s go have all these invasive tests and find out if we qualify for this trip of a lifetime; and if we are lucky enough to get a positive diagnosis, let’s go spend lots of time in a modern hospital or two where they have great drugs (while possibly removing parts of your body) and cutting-edge technology”. After that, the travel package promises lots more drugs, enough to last you for months or even years, (whether you like them or not), multiple trips to hospitals and health professionals, and if you’re really lucky you also get dozens of special “spa” radiation treatments to make sure you stay beautiful for years to come. No, I didn’t sign up for this journey, this “holiday of a lifetime”. Instead, (in my early sixties) I feel like a small child who has been told they have reached the right age to start school now, and there’s no arguments about it – because the powers that be say you have to. You sort of figure out from talking to some students in higher grades that this is the school of hard knocks, and you are torn between admiring them for their progress so far, and dreading what lies ahead. So now here I am, about nine months into an open-ended course called “How to Cure Your Cancer”. The course-providers promise you will eventually graduate if you obey the rules and pass all your assignments. There is, however, some fine print at the bottom of the syllabus that says if you don’t pass, you will have to repeat your course – maybe months or years down the track, and maybe more than once – until you either achieve a pass mark, or fail completely. Not many people read the fine print, especially not your well-wishers who pat you on the back and regale you with stories of friends and family who’ve made the grade. So, what’s in this course? There are several complicated modules and just perusing the syllabus is enough to give you information overload. If you’re very lucky, you get to skip some of the modules, but the following is an outline of the course that I’ve been forced to attend so far. MODULE 1 – Diagnostics This module was sort of like “Prep”, the outcome of which would dictate whether I was going to be enrolled in the rest of the course. It was not fun at all and I prayed I would not pass. My partner and I rushed from GP to specialists to pathology clinics and back again. As we live in a rural location, there was lots of travelling involved as well. It was hard because it took several weeks to get an answer: a frustrating a fearful time for the both of us. This module involved an MRI scan and multiple: Mammograms CT scans Ultrasounds Bone scans Biopsies Eventually we were sat down by a smiling surgeon who summarised the results of all my tests, congratulated us on not falling to pieces, and told us that I was now enrolled in the following modules, plus a few others that might be thrown in along the way: Surgery Level 3 Advanced chemotherapy Advanced radiation therapy Extended hormone elimination And then we were given homework. MODULE 2 – Homework We were handed a pile of books and pamphlets on breast cancer and its treatment and staggered home under their weight. They did not make for light bed-time reading. Here are some of the chapter headings: Mastectomy and recovery Removal of lymph nodes and chance of lymphedema Side-effects of chemotherapy Side-effects of radiation What to tell your loved ones How to access support I can tell you that we both suffered from information overload, but that apparently is the norm and your teachers are generally patient with you as you climb this steep learning curve. MODULE 3 – Surgery Level 3 The surgery module was perhaps the easiest one to complete (after a few hours of fasting preparation, it was over in the blink of an anaesthetic mask), but the recovery module was rather tough, especially as my surgeon removed my lymph nodes down to level three – 30 of them in all. The fact that only the left breast was removed posed a problem for me: was it better to be half-intact, or would I be safer if both of them had been removed? Things were pretty sore for a while, but my teachers kept telling me things would eventually get better – even if I felt rather lop-sided. I could always enrol in another surgery module down the track to fix that if necessary (see Module 10). In the meantime, they fixed me up with a couple of prostheses: two soft ones, and a harder silicon one – all of which feel uncomfortable to some degree, especially if worn for long periods – but school rules state we have to look our best at all times! MODULE 4 – Histopathology Now there’s a word I hadn’t encountered before, but it turned out to be the pathology results of the bits of me that were removed during surgery – a sort of secret test that they forgot to tell me about beforehand. Except in this case, the higher the marks, the more of a worry you are to your teachers. Apparently I had very high marks indeed, which is why I was then enrolled in Advanced Chemotherapy. MODULE 5 – Advanced Chemotherapy The chemotherapy module was by far the toughest. It began with a session on “chemo education” where I was drilled and grilled about hygiene because my immune system was about to taken out entirely. I learned about cannulas and infusions, all the different toxic chemicals they pump into your body and their wonderful side-effects. I learned the names of these drugs and that they are actually carcinogenic in themselves! Once the practical classes actually started, I watched the oncology nurses don gloves, masks and gowns so that they didn’t come in contact with the nasty stuff. I learned that cannulas are painful (“Needles 101”) and that the nurses added into the mix steroids and anti-emetics that stopped me suffering from toxic shock and nausea. Sure, the support staff were lovely, but they monitored me carefully to make sure I wasn’t about to drop out because it was all too hard. I had to pace myself now, as a whole raft of side-effects set in (diarrhoea, reflux, difficulty swallowing, fatigue, sleeplessness, anxiety). After four doses of the hard stuff (they called it “AC”) two weeks apart, I then started on a course of 12 doses of Taxol, which was supposed to be mild in comparison – but it gave me a significant amount of depression and insomnia, and made the soles of my feet go numb and my started killing my toenails – a delightful syndrome known as peripheral neuropathy. Fortunately, the head teacher decided to excuse me from the rest of the course after only nine doses as he didn’t want to risk permanent nerve damage. And in amongst all of that, there was “Needles 102”, which involved fronting up at a pathology service each week to have my blood extracted for testing – basically to make sure I had enough white blood cells to survive the next class. MODULE 6 – Surprise! After three weeks on chemo, I discovered a “surprise” module that wasn’t on the syllabus, but someone decided to throw in just for fun. In my case it was severe chest pain which ended up (after being carted away in an ambulance and spending three days in hospital) as being blood clots on the lung. Various doctors assured me this was caused by the cancer, not the chemo, but either way a long course of blood-thinners has ensued. At first I had to inject the drug daily into my stomach for a few weeks before they moved me onto tablets. This taught me heaps about how not to be a wuss. My close friend, who still hasn’t figured out how she signed up for the chemo course, suffered very badly from the side-effects of Taxol, ending up in hospital three times and needing a couple of blood transfusions, as well as extra steroids. At first her doctors denied the connection, but eventually had to admit that she was not a suitable candidate for the course after all and stopped her treatment. Luckily she wasn’t signed up for radiation therapy as well. MODULE 7 – Self-paced Learning Having cancer has taught me lots of things, mainly about emotions, my strengths and weaknesses, and my connections to friends and family. I have learned that most people are very kind and helpful, but that nearly everyone has a story to tell about a loved one (or two, or three!) who has received their own specific cancer education. It makes you wonder why this disease is so rampant. Cancer has also taught me to ask lots of questions of my teachers, to take notes whenever possible, and to compare notes with fellow students. I’ve also had quite a few consultations with Dr Google which continue to be quite useful when the issued text books fail me. Dealing with my new self-image has been a big component of this module. As if I wasn’t feeling pared back enough after losing a breast, within a month of beginning chemo classes, I began to lose all my hair. Actually, it pretty much fell out all at once – in the shower – and stuck to my body like a werewolf costume! After I lost my eyebrows and most of my eyelashes as well, I was pleased to attend a session of the Cancer Council’s “Look Good Feel Better” program when it came to my local town of Batemans Bay. By this time I had figured out how to tie a headscarf in a vaguely exotic fashion and team it with some dangly earrings, but the make-up class was excellent, especially as it came with lots of good quality free samples. Luckily my hair is now growing back, but I’m still getting used to the fact that the colour has turned from brown to grey and that I now look like my mother! But I think the biggest lesson I have learned so far is that life is precious and not to be taken for granted. I’ve now begun a meditation practice that is helping me to understand the power of the human spirit and its connection to what lies beyond our physical bodies. MODULE 8 – Radiation Therapy Right now I am about half-way through my designated 25 sessions of radiation therapy. One of the ways they trick you into staying the course in this module is to provide lovely free accommodation during the week right next to the radiation oncology clinic in Nowra. It’s a bit like boarding school, but there’s only a handful of fellow students, and most of them seem to be taking different classes to me. However, staying here means I don’t have to spend up to four hours each day driving backwards and forwards for treatment. Before I started this module, I received a special one-on-one education session where I was warned that irradiating under my armpit (where all those naughty lymph nodes used to be) would give me a 40% chance of developing lymphedema sometime in the next few years. This is a charming syndrome whereby your affected arm ceases to be process lymphatic fluids and lets them swell up under the skin instead. Since arriving for treatment, I’ve learned that the radiation nurses are lovely and very skilled and that the radiation itself does not hurt. However, because I have a degree of arthritis in the back of my neck, having to lie on the table with my arms above my head and stay perfectly still for 20 or more minutes at a time is extremely painful. Painkillers are helping, and so is meditation that focuses on the breath. I’ve also learned that there’s lots of lovely walks around Nowra and that it’s good to stay active. I’m missing being able to work my beautiful big garden at home, and my husband too, but patience is another lesson that’s thrown in for free. MODULE 9 – Hormone Treatment This is yet to come and should actually be called “anti-hormone treatment”, where they plan to give me a drug to take for the next 10 years (yes, that’s right!) which will strip any remaining estrogen out of my post-menopausal body. The little I’ve learned about this so far tells me that it will not be fun at all – and sometimes you just have to make a judgement call about when you’ve had enough cancer education and just want to be left alone to enjoy the rest of your life in peace. MODULE 10 – Breast Reconstruction This is the first module I’ve found in the whole syllabus that’s entirely optional. And until I’ve pretty much recovered from the entire education process I’ve been through so far, I know I won’t be able to make a decision about whether to enrol in it or not. Apparently the operation would be free for me, but right now the thought of more surgery is not appealing in the least. I will keep you posted.
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Cancer Council NSW would like to acknowledge the traditional custodians of the land on which we live and work.We would also like to pay respect to elders past and present and extend that respect to all other Aboriginal people.