(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 fearRadiotherapy (5 weeks)
If you haven't been through it yet and are worried, please don't. It sounds much worse than it is. The receptionists, nurses and radiographers are really lovely. It doesn't hurt. It doesn't take long. I was in and out within an hour or less. My boob was a bit itchy throughout the treatment and became redder as the treatment progressed. But it wasn't sore. I felt tired for about 30 minutes after the treatment. The first week after finishing radiotherapy, you could clearly see the area and a clear line where the radio was targeted, it was a bit bumpy but not blisters. From the beginning I put sorbelene on twice a day until my friend told me about Tallow cream, I alternated them at first but after a while just used tallow because I found the sorbelene made me more itchy. Second week after finishing; there where a few changes to my skin. It was the same as the after ejects of sun burn without feeling the burn. My skin turned a darker brown, then peeled back to a nice tan colour. I've had quite a few headaches since finishing radiotherapy but I get migraines anyway so it could just be normal for me. I wish you all the best throughout your journey with breast cancer. I hope I have helped to take some worry out of the whole experience. Think happy thoughts, love Becky
All Clear happy and healthy, BUT pre admission tomorrow for Mastectomy/Recon struggling mentally..
To say its been a tough week, has been an understatement even after a recurrence multiple surgeries and treatments over the past 6yrs. As much as I knew it was coming, I wasnt prepared for the call from Hospital for my pre-admission tomorrow. 19 months on from a lumpectomy, 13 months post chemo, happy, healthy reclaiming my life. The mental torture has been relentless this week, knowing I'm WELL but in light of a recurrence don't gamble Melinda, do a Mastectomy/Diep flap reconstruction. Even knowing deep down its the best thing I could do, I still struggle with the loss, the prevention, the surgery. Its always been my struggle getting to this decision now it is here, I don't feel any different, I'm still struggling with it. I can be honest, I'm scared, petrified of the actual surgery, the recovery, the loss, the end result. Struggling with feeling Im damned if I do, damned if I don't. Maybe I'll feel different once it's done? Ive looked at it every which way possible, and its just so mentally challenging when I know Im so well...the tears havent stopped. I will also be mostly alone through recovery as my kids are going to live with their Dad as its easier for them to get to Uni and my baby in VCE. Whilst its the right thing for me to do...am heartbroken to not have them with me loving and supporting me. My Partner lives an hour away, due to work and life will only be able to manage at different times. Another reminder of traveling this road nearly 7yrs without my Mum, lucky to have my Dad who wants to help but is 77. Inspite of all this, knowing how incredibly lucky am I really!!! how dare I be sad, upset, angry, so why do I struggle, don't know how to resolve this for myself?? I've always been proactive, positive and upbeat...hoping its purely the fear thats getting in the way...
Radiation - 6 weeks completed with no tears ... some tips.
Hi all, I just finished the standard 5 weeks of daily radiation to my right breast where I had a lumpectomy last June plus 1 week of daily 'boosts' to the tumour site. The rad onc recommended QV cream and body wash. However, I had read on BCNA that people were having success with MooGoo Original Udder (haha!) milk/cream. It comes in a pump pot...I went through two bought at Pharmacy 777. I showed it to the chemo onc before treatment and he okayed. He said he knocks some alternatives back as they contain reflective metals. I am fairly pale skinned with some feeckles, tan lightly if I use sunscreen, burn if I don't, dark hair and eyes. I applied the MooGoo 3 x daily, slathered it on. Then put on a loose fitting t-shirt I could chuck out later. At night I used the QV soap free bath wash for extremely dry skin...not just dry skin. In the day I didn't wear a bra as was at home. Going out I wore a soft bra to my appointments. I developed a pale sunburn colour around week two and my breast and nipple were quite warm after treatment during the last two weeks. Minor itchiness on collar bone. During the last two weeks the nurse told me to do salt water baths to the breast to remove heat and redness. These really work! Boil water, use 1tsp of salt per litre of water and mix in. Store in fridge. When cold, use a clean flannel and cover breast rad area/armpit and leave for ten mins. Pat dry and apply cream. I know we all have different reactions and skin types, so this may not work for you. But my nurse said she was very very pleased with my results and had seen some very red angry breasts! She even documented MooGoo as an alternative for others. The rad onc said he was pleased and I should be too, as did the technicians. Don't underestimate the salt water breast spas! When you take the flannel off you can feel how much heat it has in it! I can send a pic to anyone who would like one - I know some people early on are really worried and I think most of WA has seen my breasts ... feels like it! *Remember to ask your rad onc and that we are all very different in our reactions if you are thinking of giving it a try. Good luck with rad ... mine was great at GENESIS and it was a walk in the park after my chemo! xxx
Deep Inspiration Breath Hold (DIBH) - Radiotherapy for left sided breast cancer
Deep Inspiration Breath Hold (DIBH) - Radiotherapy for left sided breast cancer https://www.youtube.com/watch?v=yEKFoHT-4DE The radiation oncologist and the intern took the time to look into, discuss and understand my medical history, then explained their treatment plan for me. I was given illustrated booklets and the link above to prepare myself. Every treatment for BC has frightening risks/side effects, but I am grateful to be fully informed and able to process the information gradually, rather than stressing about 'the unknown", which is far worse. Thumbs up for public health radiation oncology - so far.
Hooray for MooGoo!
I finished 20 sessions of radiotherapy 2 weeks ago, and got through it ok. Not tired, and my skin was fine. I had a little warmth on one or two occasions, but that's it. I used MooGoo Udder cream (what an apt name!) twice a day and started it a couple of weeks before treatment, and until a couple of weeks afterwards. At the end the nurses said that my breast looked like I'd only gone through a week's worth of treatments, the skin was so good. So, for people about to start radiotherapy, I highly recommend MooGoo (and no, I don't have shares in the company!).What The Heck Radiation and Chemo? What to do and the side effects, are freaking me out.
In July, I had a mastectomy with lymph nodes out, then they found cancer somewhere else in the body with completely no relation to the breast cancer. If the breast cancer wasn't enough. So, now I have to deal with the other cancer site, which is colorectal, and I have just had an appointment with the radiation and chemo doctors at Royal Brisbane Women's, and I don't mind admitting I'm freaking out. The side effects of the 50/50 cure seem to be so much worse than the actual disease. Yes, I know that the disease, if left to run riot, equals, you know. But, after all these years of funding and funding, why do we not have something better? It's so weird that since my surgery, I have had posts popping up on my socials left right, and centre. Like the "Cure from Japan with Bee Venom" seriously makes me want to find a hive and fly into one with wanton abandon. A "Breakthrough in South Korea, scientists can turn cancer cells back to normal cells," .. Say WHAT? (frantically looking up flights to S Korea) Then there is Ivermectin, Febendazole, and something blue? I mean, I have never paid attention to these things before, but now, my ears prick to the slightest twitch and rustle, like a kid who hears a lolly bag open within a 10-mile radius. I can't help it, I am confused about everything, am I the only one? When I confronted the chemo doctor about all of my concerns and questions, he said If you don't do this, you will be in palliative care in 3 months .. What, hang on what the heck???? I mean, just like that, he said that without any pause or thought, I was never advised that before, and then said, "Whatever you decide, we start therapy on the 28th July, and proceeded to walk out. This journey is brand new; everything has happened since July, and it is no lie, akin to riding a faulty wooden roller coaster with loose nuts, bolts, and rotting timber, operated by a maniacal, crazy clown, in the middle of a thunderstorm, who looks like he has been dragged through a hedge backwards. Just to clarify, the clown is the cancer. I have questions, a thousand of them, with no end of these questions in sight. Where are the natural alternative therapies, like, singing bowls, or is humming drums? What about the milk from an Aztec goat? Yeah, or the petals from a rare flower that only grows on top of some hidden temple in the Amazonian forest, which, on recent reading, is currently swarming with giant anacondas in a breeding frenzy, ugh! Ok, I made up the goat and flowers. No, there is only radiation and chemo. Sigh! I don't know what to do with this option. I have been told my cycle will be 28 days straight of radiation with chemo. I can look forward to a burning bum hole, diareah, burnt skin, possible issues with legs and bladder, and kidneys, and all sorts of other stuff. However, I was told that everyone is different and responds differently. Well, I have to say I don't feel that comforted at all. I am overwhelmed. If anyone can share with me their experience with radiation and chemo, I would love to hear from you. And if anyone knows where I can get my hands on an AZTEC goat in Brisbane, I would love that too!! Goats are ravenous but cute.
Moo goo cream for radiation.
Received a big bottle of Moo goo cream for Christmas and when I started chemo received a gift from the chemo company which included a tube of the same cream. I was given Sorbelene by the radiotherapy nurse but I found the thick consistency of it unpleasant to smear over my breast. So I used up all my moo goo which had the ok from radiology. By chance I found the makers of Moo Goo do an oncology care pack for $40. It arrived within 5 days. It had my cream, milk shower wash for the shower, socks, and samples of tinted moisteriser. It was definitely value for money. They also do it as a gift package if you want to send it to someone.
Starting radiation
Well, I’ve had my coaching session with the deep breathing. Not as scary as I thought, and I’m sure I’ll get better at it. Today I had my planning session, so start on 10th April. My cording has moved diwn my arm closer to my elbow so physio came and saw me as well. I’ve also joined a heart health trial for those with left side radiation. Having an mri and ultrasound of my heart on Sunday, then another six months after radiation finishes. Also got my treatment nurse. I had a breast care nurse for before and during surgery, now get another one for rads. Just love this hospital. If you have to have this rotten thing, at least everyone around you is friendly and helpful.
