(Hopefully) At the end of my journey
Hi everyone. I have been reading all your posts (thank you) and never wrote anything myself until now. I was diagnosed with a pretty small but aggressive tumour last June, and pretty quickly moved to a lumpectomy, then 4 dense doses of AC chemo, followed by a planned 12 weeks of Taxol (I only got to 8 due to peripheral neuropathy), then 22 doses of radiotherapy (including 6 'boosts'). I had some rotten times, AC chemo was difficult- I tried to work while I was having it but had to go on leave at about treatment 4. I had issues with almost all my procedures- my hook line had to be done twice (nearly 2.5hrs), I became febrile and had to be admitted to hospital, my veins collapsed, my PICC line removal was difficult to say the least and I ended up in hospital for emergency surgery, and right now I am battling the radiation burns. I lost ALL my hair, couldn't taste anything, felt nauseous and exhausted and am still having a heap of side effects. I live alone, so looked after myself pretty much all the way along, although I had heaps of support from my sister and some very good friends. But the most important thing I wanted to say to anyone starting out- nothing that happened to me was as bad as I thought it would be. I used mindful and meditation techniques when I was having my procedures and they worked for me- well most of the time. I fought a battle in my mind with cancer every day and I am so proud that I feel like I beat it many more days than it beat me. I just made up my mind that it wouldn't defeat me on a daily basis. I had a great surgeon, a wonderful oncologist who provided a positive and confident outlook, and all the doctors & nurses at the hospital were gold. I thought the chemo ward would be sad and upsetting- instead I found it to be a place of laughter and hope. I used a mix of public and private treatment and still see somewhere around 13 medical and allied health professionals while holding down a full time job. I didn't write this for anyone to say I did well. I wrote this to say DO NOT BE AFRAID. You can do this and there is lots of help if you need it. Reach out to this community, to a breast care nurse (thanks McGrath Foundation), to your family & friends, to the volunteers, a psychologist- people want to help you. Then when you get better, you can pass it on. Pay it forward. All the best of luck from me. Believe your mantra- mine has been: Things could be worse Accept the things you cannot change Do not live your life in fear
What a fortnight!
17 Aug sat. Closed down business. Started cleaning up the mess 18 Aug sun. Cleaned up business. Had job interview 19 Aug mon. Had another job interview. Did more sorting and cleaning 20 Aug Tues. offered job. More cleaning and sorting. We have so much stock left. Had heart echo 21 Aug. Wed. More cleaning and sorting 22 Aug. Thurs. Travelled three hours to check out job offer. On way back home we got offered another job. I turned it down and left hubby VERY disappointed 23 Aug Fri. Accepted job. Handed in house rental notice. More business cleaning and sorting. Onco appt and told they found a suspicious spot on my liver 24 Aug Sat. We got sent our job contracts. More cleaning and sorting 25 Aug Sun. Travelled to Melbourne to farewell friends. Signed and sent back contracts 26 Aug Mon Morning tea with breast buddies then home to start personal packing. Hubby still cleaning up business 27 Aug Tues. Final BC treatment. More packing personal and cleaning up the business yard 28 Aug Wed. Organs ultrasound. Initial findings show all clear. Waiting on onco on Friday to review. Business paperwork for a couple hours. We need to be out of the business premises by Sat. Hahaha. Doubt that happening House needs packing up so we are ready to move in eleven days. Hahaha. We will be having very long days if we want to achieve this. good luck to us. At least the house will be empty when we come back to clean it a week later. I think I am going back to full time work to have a rest. This will all be worth it. It will put us back in a healthier financial position which in turn means less stress. I am looking forward to another month away so all of this is behind us. xxxxxx
Tough Old Chicky Award
I'd like to nominate my friend Ms M for the inaugural Tough Old Chicky award. Ms M, at 88 and following a formal BC diagnosis a week ago, had a mastectomy this morning and tells me she feels fine. Except the tea is shite. We are never sure what goes on beneath the surface but this lady, who has seen more than her fair share of adversity, is an inspiration. Dry and erudite, she has taught me heaps about accepting what you can't change. With grace. Lessons about how to do the best you can with what you have and concentrate on what you do well. I'll take her decent tea tomorrow.
Oncologist visit
Hi everyone, well today was my visit to oncologist for two months, I'm taking kisqali and letrozole and my results were great and she told me everything was stable I'm so pleased everything is doing what's it's suppose to be doing. Enjoy your day everyone I know I will be now 🙂🙂
Things worth remembering
Ruth Hunt, in Perth, has published a letter to herself, about the things she would have found valuable to know earlier, before metastatic cancer, It seemed to me a really good list for almost anyone. Her circumstances are very sad, but she has found a way of looking at the best of her life. A link to the full letter is at the top. https://www.kidspot.com.au/news/perth-woman-with-days-to-live-pens-touching-open-letter-to-her-precancer-self/news-story/af5e4b2fd3a89fa1029f847cc3bfbedb Ruth’s letter Dear Me, You don’t know this yet but you’re going to have a rough few years in the future - far earlier than you might expect. Don’t worry – as rough as it gets, it turns out you’re a lot tougher than you thought and you will have a lot more support than you could imagine. Getting cancer at 34 will teach you a few lessons. Along the way, you’ll have amazing experiences, so don’t fret it’s not all doom and gloom. However, despite all these wonderful things, at age 34 you will unfortunately be diagnosed with stage 3 triple negative breast cancer. And, by the time you’re 37, you’ll be diagnosed with stage 4 terminal breast cancer. Cancer sucks. The first time around it’s not the end of the world. The second time around is a more difficult pill to swallow but, again, it’s not the end of the actual world. It will, however, be the end of you in this world - somewhat prematurely. Cancer will teach you that you can still train, go out, dance, sing, cook, love, work, be a sister, girlfriend and friend. The main lessons it taught me are listed below (because what lawyer doesn’t love a good list. Lesson one – Ask for help Mum always tells you the story of how you were playing with pieces of cloth as a one year old and that you were getting very frustrated because the cloth wasn’t doing what you wanted but you wouldn’t let anyone help. There’s also a great photo of you attempting to dress yourself as a two-year-old and failing miserably - again refusing help. Getting cancer will teach you that, not only is it ok to ask for help, but it will actually make life a lot easier. Lesson two – Family is so important In your twenties you will be so busy working and training that family gets a little too left behind at times. You move to the Eastern States and you are not very good at picking up the phone. You send birthday presents but they are usually late and when you do come home it’s for a whirlwind tour. Cancer will teach you that family is everything. They will be the ones sitting next to you on the chemo ward, flying across Australia just to be with you, sending you care packages and flowers. It will not be workmates. On top of this, you will find people who aren’t blood related - but they might as well be. They are the friends who call, even after there’s bad news; there will be friends who support you and love you and accept you, even if you’re a very different person from the one they met. Treasure your family and spend as much time with them as you can. Lesson three – Stress less. I promise you, you won’t be sweating on the small stuff when you are facing the end of your life. In the grand scheme of things, missing a day of work because you have a cold is fine. It doesn’t matter that you got 69% in an essay instead of 90%, in the long run no-one looks at your marks. Working Christmas Eve instead of spending it with family is a really terrible idea. (You don’t even get paid more on Christmas Eve!). Don’t worry if you’re a tiny bit late - no-one will remember. Same as no-one will remember if you wear the same dress to two functions with the same people. Lesson four – Dogs are awesome You will make the magical and terrible mistake of buying a puppy two weeks after getting a double mastectomy. Magical because Dougal is the greatest character ever. Terrible because you will quickly find out that lifting puppies is difficult post-surgery. But you will learn that sometimes just cuddling your dog is one of life’s great joys and that, post chemo, having a nice warm body lie with you is just what you need. You will get your own dog one day. He will be all yours - weird and lovely and he will worship the ground you walk on. He’ll be your only dog ever and he will be wonderful. Lesson five – It’s ok to say no You don’t know it yet but you are prone to saying yes to everything. This is one of the biggest lessons cancer will teach you. You will learn that you do not have to always say yes. Often, there are other people who can do the work. You will learn that if someone gets a touch cranky when you say no, that’s not actually your problem, but theirs. Cancer will teach you that a lot of people have been taking advantage of your generosity and kindness for a long time. The earlier you learn to say no, the better. Lesson six – Travel. Travel as far and as wide as you can. Don’t worry about taking time off work - it will always be there when you get home. As a wide-eyed, borderline fan girl law student, you and your friends will be dumbfounded when the Hon. Justice Michael Kirby tells you how he drove across China and Russia in a Kombi when he was a young lawyer. At the time, you will be so busy applying for law internships that you can’t fathom the idea of taking that much time away from your floundering career. Do it. There are so many places for you to explore. Go to Africa while you can and yes, Europe is amazing but there are a lot of different places to explore beyond Europe. There are so many places to go but, by the time you’re 34, cancer means you won’t be able to travel anymore. These are the lessons you will learn. You will wish that you had known them before getting cancer.
What I wish I had understood 4 months ago.
I wish I had trusted that I would get knocked down but I would get up again. That my fears of chemo were real but exaggerated. Yes AC was tough but Paclitaxel less so. That I should just listen to my body and rest. Woolies online shopping was a godsend when energy was low. Have a project: I'm a family history nut and sitting at the computer was doable when physical exertion wasn't. Finding the family skeletons gave me a purpose. A walk in the outside air is therapeutic. A coffee with a friend more so. But limit talking about your treatment, symptoms, etc to a few minutes so you can participate in the real world. That much of what you read online is to be taken with a truck load of salt That Dr Googling can be soul destroying. (But I did it anyway!) That some friends wont be there. They are doing their best and perhaps it isnt good enough, but let it go. You've had a reality check, are you REALLY going to waste another minute on it. Accept their apologies,if they come, with grace. Say yes to any and every offer: a walk, a meal, a vacuum. And pay it forward when another sister gets the same spin of the dice. Life doesn't stop with chemo you just have to pace yourself. Grrrrrr. I hated that. Six months ago I was cycling 40 kms. My three words were: acceptance, patience, courage. Patience was tough. Some days my three words all started with F. But I got there. You will too.
Do you celebrate Valentine's Day ?
As yet another lonely Valentine's Day comes along I think of how others may be 'celebrating', how circumstances can be so different. Some will be cuddling up and enjoying spending time together. Some will be travelling near and far. There may be flowers and chocolates, plans for a great day out together. Some may be visiting hospitals or nursing homes, battling to even remember each other. Some may just think it is all a beat-up money-grabbing venture. With the new lockdown in Victoria I cannot go to visit my Valentine (he is at his final resting place). However you are 'celebrating', please take the time to appreciate all you have. Please, no political comments, allow others to enjoy this day if they want to celebrate it. Hugs to all, especially those who have no-one with whom to share the fun of the day.
Letrozole and Prednisolone
I posted on another discussion thread the other day that my oncologist was very unhappy with the joint pain that has gradually crept in over the 8 months or so that I've been on Letrozole. As well as okaying painkillers, he gave me a first option of prednisolone over 7 days to see how it would work. I took my first one this morning, hoping that it would make a perceptible difference and that I might see some improvement by the weekend. I got up from my desk at midday and walked across the office - shocked that I thought about the process after I had already taken a few steps. Tonight, during dinner, I got up from the table to let the cat out. To make it clearer, I just stood up in one motion and started walking. Last night, to get up from the table took me swinging around sideways in the chair, painfully levering myself up using the table and bench for support, getting my balance, then slowly straightening my body over the course of a number of hobbling steps. I turned around to go back to the table and saw one of the kids with her mouth open - "Mum! You just got up to let the cat out - did you realise that!" I feel overwhelmed...I don't know what I feel... I knew it was bad but I don't think I realised how restrictive it has become. I'm scared in case it's some anomaly. I'm scared to hope that it will keep improving and that the improvement will continue after the course is finished. I'm not sure I can go back to feeling the way I was. I'm not saying that I'm pain-free. My legs are really aching after a day at work and my joints are still sore but they're sore in a way that I can feel it, not stiffening up and sore in a way that I can't actually do anything.
