(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
Is "Brian" the new Farnham??
So.......I thought I had given my lump "Brian" a beautiful farewell concert, complete with audience, drinks and a hearty "F...k Off Brian" back in March. At that stage, I was cruising through the Stage 1, grade 3 euphoria of "You got this Girl!" Doctor will do a Lumpectomy one morning, rip out a few nodes, dose of radiation and some pills just in case. Oh yeah, I was still scared, but I was being told - "we" got this!" "Brian" has left the building!!! So......the discovery of a 85mm lump of "Brian" and 4 positive nodes and 1 pissed off node, caused panic and it is now Mastectomy time. The family and I throw a "Fast and Furious" Movie Marathon as a Farewell to "Lefty". Receive a beautiful Love Note from my oldest daughter thanking "Lefty" for being an amazing breast and the Husband gets the final touch.. Rocked up for surgery on 6th May -it goes really well. Up and about that afternoon walking with the drip in my room, that I share with a 72 year old Lady who "Screams" in her sleep, calls out my name nonstop, refuses to eat and sneaks off for cigarette breaks. I wanted to go home just so i could actually sleep and rest!!! Anyway, 2 days after surgery, Dr. (I am God) Bolshy turns up with his entourage of Junior Registrars and says - "you can go home and by the way you are now Stage 3, Grade 3 and walks off." W.T.F. Did you just say? I had to chase this Bastard down the hallway and make him come back to my room!!!!!!!!!!!!! he refuses to tell me anymore other than you have jumped from Stage 1 to Stage 3 - the surgical team will tell you. I met up with the Surgical team last week and all hell breaks loose! "Brian" made a comeback!!! In fact "Brian" had been a busy little Lead Singer - shacking up with as many "Cell Groupies" as he could find the energy for and also shacked up with a Node (making 5 positive now and 1 annoyed) while spreading the love around! All he needed was 3 weeks of love action and he had created another 2mm aggressive growing "lump" near the original site where he was sliced/diced from the show and left his love juice in the form of 18mm of "Baby growing cancer cells" in my milk ducts. I am literally so shocked, I am unable to talk, comprehend or make any sense of what i was being told. What happened to "We got this??" Even though I am told "Brian is gone" and all is well - I am wondering if "Brian" is going to do a Farnsy and keep on making a comeback tour??? Anyway, IF Brian has left any love juice in my body or is thinking of making a 'Come Back" tour - He is in for a rude shock! I have a new band signed up to play in my body - SHE is called "Chemo and The Chemicals".....playing Centre Stage for the next 5 months in LOIS TOWN.....!! (lol) My new Motto: Find positivity in the little things and Use your words to defeat adversaries! Big Hugs Lois......who is not a Doctor's doormat.
Tips for Chemo and Radiation
Last year going through chemo I wrote down things which helped as I went through treatment to share with three friends coming behind me. Some is advice I got from other patients, some from doctors, some from nurses, some from online. Now I'm out the other side I've been meaning to post it here in case it can help someone else. If you are starting chemo just know you will get through it and its often not as terrible as you think it might be. Stay positive, moan when you want to, it will end eventually! Also I would love it if anyone has their own tips to add. (I recognise these are specific to me and may not be right for everyone.) CHEMO 1. Walk everyday. Try for at least half an hour a day. Try and make someone you love come with you. I found it so good for limiting side effects, it is my number one tip! And becoming recognised by cancer researchers around the world. Watch the Catalyst special on ABC. Its good for the anxious brain, good for your emotional and physical health and if you can debrief with someone as you walk even better. Walk everyday, even chemo days. You will feel like a warrior! 2. Get a port. You can try without but if you are having 16 infusions like me you will be glad you did it, and your nurses will love you. And get it before you start chemo. It hurts the first day it goes in but gets better quite quickly. 3. Use Emla patches on your port before chemo. They numb the site. I just asked for them from the nurses each week. Set a reminder to put it on one hour before. The only week I forgot they placed the needle three times before it worked, yikes! I use them for Herceptin injections too. 4. If your port doesn’t work try stretching your neck up and coughing to get it going or raising your opposite arm. Nurse tips. 5. If you get a Neulasta injection for after AC take Claratyne for a couple of days with it as it is meant to stop related bone pain. 6. Either AC chemo or Neulasta gives you constipation . Be proactive. Take Coloxyl with senna on the day you get your infusion and until you poo. 7. Hair falls out from 14 days on. Mine fell out about day 21. Get someone to shave it when it looks bad. Have a shower, let the water run on your head, that first feeling of water on your bald head is quite amazing! Have some scarves and hats and beanies ready and even a wig. Go to the wig libary beforehand. I won't lie, losing your hair is pretty hard at first but you get used to it quickly and after a while you just own it and put on a brave face. I got more compliments on my scarves and now with my short hair than I did before! 8. Go to a Look Good Feel Better session. Free makeup and great advice and meet other people going through the same shit. And they teach you how to rock a headscarf. 9. Do Cold Therapy if doing Paclitaxel. Look up my post on the forum. Latex gloves and a bucket of ice for hands and Natracure socks for feet. This can save you having Peripheral Neuropathy and losing your nails. 10. Check with your onco but limit steroids, ie taper sooner if having bad side effects and your nausea is controlled. I am sensitive to that sort of thing and was much better with a lower dose. 11. Suck ice during chemo to stop mouth ulcers. I didn’t do this but had it recommended. If you get ulcers rinse mouth with salt water, I bought Peter Mac (hospital) brand sachets on Ebay. Easy to use, nice taste. 12. Acid throat and chalky mouth is bad in AC. Use Gaviscon dual action tablets, try staying upright. 13. Your skin will go bad and then improve. But it turns over so much slower so look after it. Use a drop of rosehip oil in your moisturiser (another BC friend tip) and do your hands and face every day. Sores heal slowly so be careful with them. 14. Some of your small moles will drop off? Some will go a bit weird. Your skin closes up. 15. Watery sore eyes and nose will come and go. Eyedrops if eyes get sore. I use antihistamine drops. Carry tissues! 16. Bloody scabby nose. One of my worst side effects, very bad in Paclitaxel. Can try putting a bit of pawpaw up there. Goes away quite quickly when you finish! 17. AC is hard, go dose dense and get it over with in 8 weeks. Paclitaxel is easier but going every week is not, its exhausting having to turn up 12 weeks in a row. You will be very tired by the end but the moment you stop things start to improve! About day ten afterwards you will feel a change. Your energy will come back quickly! 18. The eyelashes and eyebrows you hung on to will fall out after you finish Paclitaxel. Boo! Not fair. 19. Your hair will come back even if it doesn't seem like it ever will. Six weeks is the moment it really starts happening. RADIATION 20. Radiation is a breeze compared to chemo. No needles, no poison! Once you get used to making small talk with the nurses while lying with your boobs out you’re good. :smile: Make friends with the people before and after you. You are on the downhill stretch! 21. Strataxrt cream. I was lucky enough to get a sample pack of this from my rad/onco. I have nothing to compare it too but everyone was impressed with my skin and minimal reaction. But its very expensive, ask your onc if they have some free stuff. For 20 days of radiation about a 50ml tube would do. 22. After radiation I still have a slight tanned area and my whole breast and nipple peeled afterwards. Ow! Radiation is good for your lumpectomy scar though. Lightens it! And you won’t have to shave that armpit afterwards! LIFE 23. Tell people how you’re going even if they don’t ask. Love on those people that stay the distance. Cancer is such a scary thing for everyone and some people don’t know how to talk to you. Make it easier on them. 24. Come to BCNA if you need help. So many nice people here willing to share. 25. As my Mum used to say, Time and the hour run through the roughest day. You will get to the other side. Be gentle on yourself. Be distracted. Nice things will still happen in among the shitty bits. You are brave, you are amazing, be kind to yourself xxx <3
Pathology Results and onwards...
I got my pathology results yesterday after my lumpectomy and sentinel node removal on the 24/2. I was so relieved to learn that the cancer hasn't spread to my lymph nodes, I cried when the surgeon told me! I'm still up for chemo for about 5 months though because mine is a triple negative, doing a CT and bone scan on Friday to double check no other cancer cells have lodged anywhere. So still a ways to go but one less thing to worry about now. Yay!
Chemo Journey
I wanted to let others know about my chemo journey which started on the 16th Sept with 4 rounds of AC (after mastectomy in Aug). I am now on the Taxol regime for 12 weeks and have completed 4. It has all been manageable so far. I have experienced a few of the side effects but with medication, no nausea. The other side effects (a few mouth ulcers, Kenolab, dabbed on them first thing and they cleared up), some tingling but not too bad (reflexology offered by the Cancer Association) and fatigue (mostly in the late afternoon, where I have done nothing other than sit on the couch and read my book) have all been under control so far. I travel up to Perth from my home of Busselton (almost 3 hours drive) each week for treatment the following day and stay with my daughter but drive home first thing the next day. I have a few friends and my sister who sit with me, so that's a good opportunity for a catch up albeit I am having the infusions. My friends have been wonderful distracting me during this time. I think the steroids have made me extra hungry but I have n't put on weight so far. I have been drinking alcohol free drinks (Edenvale wines) which are acceptable when I feel I want something different over the festive season. My oncologist has reduced the premeds for the Taxol, so that will help with side effects. I am just hoping the next 8 weeks will progress in the same way. Happy New Year to you all going through this journey as well and I hope you get strength from the good things that surround us.
Xeloda -- foot care
Hi Xeloda users! This might not be news, but it was news to me so I thought I'd post it. I've been taking Xeloda for nearly five years, so have tried many potions and pastes on my feet to keep them walkable. For the last couple of months I've been using emulsifying ointment PB (paraffin wax with no flavours, colours or smells) with success; there has been less swelling and redness, no cracking and bleeding, and less peeling. I've been able to walk kilometres instead of just metres, so I'm really pleased! I was so confident that I tried some sexy boots but that was a setback after a night out, so it's back to the soft lace-ups, but my feet are still so much better. Hope it helps others too.
Newbie
Hi, I'm Barbara. I started my BC journey on 7th May. I had a lumpectomy for the removal of 44mm lump with 5 satellites on 4th June and then a further anxcillery clearance on 16th June. 9 of 15 lymph nodes were cancerous. Have started the chemo journey and I will finish off December or January with Radiation therapy. I had a clear mammogram in March 2019. By May 2020 I had a fast growing cancer that had spread to my lymph nodes. I am reasonably healthy and being over 50 do all the right health checks. There is no BC in my family. I never saw this coming, but yet here I am. My prognosis is good as my pet scan has shown no further cancer. I am lucky and appreciate my life all the more. But I do have issues around talking about BC so this is why I am reaching out to you beautiful people who understand how difficult, lonely and devastating this disease is, made worse by Covid. Anyway best wishes to everyone 💕
New and wanting to say hi 🙋♀️
Hi 🙋♀️ I have trolled on here since being diagnosed triple positive in October 2020! I had a bilateral mastectomy and left axillary clearance in November in which they found a 2nd lesion! so I have invasive lobular and ductal 🤦🏼♀️ Anyway I started AC chemo last Friday fortnightly for 8 weeks then taxol for 12 weeks. 25 doses of radiation and herceptin 3 weekly for 12 months. Then all going well 10 years of endocrine treatment! I just wanted to say Thankyou I have found this network a wealth of information and feel so grateful 🥰 Of course I knew nothing when I first started and felt like a deer in the headlights so to speak. 🦌Chemo Day 1
Hi everyone. I thought i would give you a heads up about my chemo today. Firstly i did kick its butt after the 1st hour. The 1st hour was the hardest as i chose the cold cap. I had snug warm blankets but oh my head killed. Had Panadol and then had some drug adavan oj I cannot remember. Once i had that i was fine. Went to the toilet alot with all the fluids. At home im ok. Headache and a bit nauseas. Love to you all xx TRIKKI2
This is where I'm at
Fifteen years ago I started on a journey to stop using man made chemicals in or on my body. It took ten years to find alternatives that worked for me but I finally made it. Headaches, hiatus hernia, hot flashes, mood swings, arthritis, IBS, TIAs, hayfever, muscle cramps, and whatever. All under control with natural products and cranial osteopathy. Unfortunately cancer doesn't care how healthy you are. It is happy to attack anyone. I was diagnosed with breast cancer in April this year, so with disgust I accepted that I needed to poison my body with chemotherapy, but I would do so also using complimentary therapies. Ten years natural solutions down the drain. Chemo has a mind of its own and takes over everything. My natural remedies no longer work. I am trying to find new natural solutions but so far have had limited success. Headaches, hot flushes, heartburn plus the usual side effects of chemo are now all controlled by more chemicals. Arghhhhhhh. On the positive side, chemotherapy has taken over the cancer and shrunk it to miniscule proportions. Hooray! My arthritis seems to have disappeared. Hooray! My IBS has not played up. Hooray! I have not had any TIAs. Hooray! On top of that, the blisters I have on my toes as a result of the chemo are responding well to lavender oil, hooray! and the blood nose is reduced by poking lucas paw paw ointment up it, hooray! I know I have glossed over lots of negatives, but by keeping hold of what is good I can keep moving forward. On Tuesday I have an appointment with the Psych to try to deal with the overwhelming sense of grief that hits me unawares. One step at a time! I have now finished all four rounds of AC and am currently in the Paclitaxel cycle (four down, eight to go) with Herceptin every third week for a year. I will be having a mastectomy and lymph node clearance before Christmas. Love to all Melody