Follow up oncology appointment....a colossal waste of time.
Apologies for the monologue in advance. So yesterday was my 18mth post chemo appointment. That's two hours of my life I won't get back. What a flipping waste of time. I have zero raport with this man. Bearing in mind that this is the bloke who told me at the beginning that we are basically wanting hormone therapy to "castrate me"...LOL....Yes those were the words. I could write a book on the dumb shit people have said to me along the way. Prior to now he's told me that things will get better over time. Well I think that 18 months is enough time so I went in with a list. There are various things that I attribute to chemo and rads, the others to Tamoxifen and a couple due to surgery. Sun & heat sensitivity is one of the big ones right now as it affects my income. I have just about had to give up teaching riding as I can only tolerate being in the sun for about an hour or so in summer. I overheat badly and that makes me nauseas and dizzy. Apart from the fact that I love teaching, (my specialty is riding biomechanics and overcoming fear which has proved quite useful throught BC) nobody needs to lose a few hundred dollars a week. No answer for that one it should have resolved by now. I made the mistake of saying I had been able to improve some of the Tamoxifen side effects. "Well that's good" Next subject. No interest in what had improved and what hadn't. I asked whether or not we should be doing hormone testing or something to see where that's at. Apparently that's not useful until about the 3 year mark and gives no evidence of the eficacy of the drugs. By this time I had zoned out and didn't bother asking anything else. The ho hum of changing to letrozole after then just buzzed in my ears. Blah blah blah... I have come to the conclusion that once active treatment is over, you didn't die, and have completed the suggested steps the team (apart from the surgeon for followup scans etc.) has pretty much done their job. "Next please" "See you in six months." Why, what for? So I can sit in the waiting room for an hour or more for a 10 minute appointment. From now I will go in to check the boxes, grab my script and stay in the loop just in case I need it later. They have new patients to worry about which is what they should be doing I guess. To be fair, what can they really do? What's done is done. What am I really expecting from them anyway? There is no magic potion to reverse things just time, perseverance and never giving in to it. I have no more tears for this thing these days so I just get annoyed. Luckily I do annoyed very well. Annoyed keeps me searching for ways to improve things and make the best decisions for myself and the quality of life I find acceptable. No less than 99% I might add. I can take care of the 1% with wine ::wink: Steer your own boat lovelies, you are the best captain for it and nobody knows you like you. Thanks for listening as usual. Hugs to all, xoxoxoxoxo
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
Three years ago today...
I was admitted to hospital for nutropenia after my first chemo session. I remember being so sick on that Boxing Day. I spent 7 days in isolation with terrible side effects. During chemo I ended up being admitted for nutropenia a total of four times and was so sick after my third chemo session I didn't think I would make it through treatment. Three years on, here I am cancer free. Except for a new disease, I would be on top of the world. Today is also 26 days since I had major surgery to treat Achalasia (unrelated to BC). I have a new stomach and am re learning how to eat with my new plumbing. Still on mostly liquids and pureed foods, but I get to have lots of cream with everything to stop further weight loss so there's an upside to everything. Three years, two major diseases and I am still here doing fine. I made it through. For all those who are struggling, I hope that your struggles will pass as mine did. Wishing everyone a very Merry Christmas.
Questions to ask 'Post Surgery' of yourself - to your Specialists - Tick Sheets - Self assessment
I know that after my own surgery, I didn't always quite know what questions to ask of my surgeon and 'the team' that we all see regularly for the first 5 years following our treatment - so I set about looking for 'tick sheets' that would help me, as these appointments approached! I came across some really interesting files. They are all 'multi paged' so I've put a 'sample page' from each document to give you an idea of what is in it. The first booklet is available at most Cancer Clinics and was put out by the Cancer Council - 'Living Well After Cancer'. It is a good one to give to friends & relatives to read as well - to give them an idea of the longterm affects of cancer even after successful treatment - as they often think that once you've had your surgery, chemo, rads & tabs - that you are now 'well'. We all know that that is NOT necessarily the case! :( It really is a lifetime sentence. This booklet covers a lot of areas that concern us all - and may be able to help answer questions in many situations that we face. (sample page) The 2nd one is: "Questions to ask 'post cancer' " - a 'tick sheet' - these questions could be spread across the whole team - your surgeon, Onc and Rad Onc as well as GP. Tick the ones that are relevant to you in the lead up to your individual appointments. (sample page) The next is "Self Care Specific Symptoms" - this sheet could also be for any of your team - with the 2nd section relating more to mental health issues that may impact you. (sample sheet) And finally - a Survivorship Care Plan - virtually a ''Self Assessment Yearly Checkup'' sheet .... which has more specific symptoms that you may be concerned about and also has pages for noting yearly checkups required re Dexa, Mammograms, Colonoscopy, MRI etc - almost a 'diary' to keep re future appointments. (sample Pages) Write down the dates you've had them, and when the next one is. Add any other exams that are not already there You can use any or all of these documents to track how you feel you are progressing - date them & further down the track, you can compare them to see how you are travelling. Take care & I hope these sheets help in tracking your health - both mental and physical. xxx
Tears in the Dark.
Last night, My Wonder Woman Shield got laid down. I took the suit of Armour I have been wearing since the day I found out I had Breast Cancer in February and I smashed down the wall I had built around myself for protection and unleashed the ocean of tears that been closed up inside. In the quietness of the night, I howled and gasped for breath as the heaving wave came crashing around me. Why, did it happen last night? Simply, the fear, the worry, the unknown and frightened woman I have hid away needed to let go and accept for the moment, I had done all I could and it was okay to feel the fear. I cried on and off for hours, whether awake or in my sleep - I just cried and cried. This morning, I dressed, ate breakfast ,swallowed my first dose of pre meds and went to the Chemo Clinic with my Husband at my side to begin my first round of Paclitaxel. (Due to some complications from surgery - they switched me to 12 cycles of Taxel then the 4 x 2 double doses to give my white cells a boost - hopefully). I got greeted, walked into the inner sanctum of the Chemo Ward, asked to choose a chair - next thing the fucking fear, reality, shock hit me and I took off, out the door, gasping for breath and crying looking for the exit. That really shook me to the core - that need to run! Holy shit, never in my life have I run when faced with adversity. I have always stood there and fought even I could fight no more! Not today - I wanted to bolt, run, hide, never face anything again! it took my husband, my breast care nurse, two oncologist nurses to guide me inside, place me in the seat and soothe me back to the Lois they have come to know - The Warrior Woman. They let me weep, while i told them of my shame at my behaviour, the loss of face before the other brave souls within the room who had witness me bolting for the hills at high speed....then told me it was time. The fight was over, I sat there and accepted there was no where to go but to sit quietly and let Chemo and the Chemicals, play their tunes and fight my battle for me. Just like to point out - that there a song through my head, I normally play this song, when I am feeling overwhelmed and do not have the place to scream out loud. It is a song called "Stranglehold" by Ted Nugent. That played over and over as they put the cannula in, turn on the drugs and I felt it begin to flow throughout me. I did have a reaction to the dose - almost within minutes. Shortness of breath and a flushed red face hit me. Holy shit was i bloody frightened. Next thing I had a swarm of staff around me. Gentleness prevailed, not one bit of hysteria emanated from them. That helped me so much - the calmness, methodical protocols they applied and I was given a 20 minute break before they halved the dose and I was able to go ahead and finish the dose. I must admit the Phenergan helped and I fell asleep for the next 1,.5 hours before being gently woken with "Lois, Darling - you have finished your first cycle - Congratulations!" I burst into tears of pure utter relief and joy! As the night has begin to come now, I feel a sense of peace prevailing. I still have had the odd moment of bursting into tears over anything and everything but that is okay! The confidence and hard core Bitch will once again pick up her sword and Armour and come out to fight but just not today. Wonder Woman is having a rest. Lois has bought herself a nice packet of Phenergan and for the first time in 2 weeks, she is going to knock herself out tonight and sleep! Sorry it is a long post - I never could just write two lines! Just like to point out I am a novelist..lol So - I will finish this post with one song you will know - "Let it Go, Let it Go!" Love to you all and Big Hugs. Lois ( who did not know she possesses the talent to sprint 100 metres to no where - in a nanosecond)An Oncologist with Breast Cancer - what she has learned from her own treatment ....
Along with the 'must read' Liz O'Riordan's blog (she is a UK breast surgeon who had 2 bouts of Breast Cancer) who writes candidly about her own diagnosis, surgery, chemo, tabs & treatment overall .... http://liz.oriordan.co.uk/ Here is another good read - this time by an Oncologist who also has breast cancer & had chemo in the lead up to her surgery. Like Liz, she found that what she had been telling her patients with treatment was not really 'what happens' in reality. https://www.theguardian.com/healthcare-network/2018/jun/07/oncologist-breast-cancer-chemotherapy
Struggling through Chemo
Hi all, My nurse has just introduced me to this group. I’m hoping to connect and share my story and hopefully somehow feel better. After being diagnosed and a short time later having a mastectomy and all lymph nodes removed, chemo started just before Christmas and I am struggling with it! Ive got another 2 months of chemo before 5 weeks of Radiation…… would love to hear other stories. I have a fantastic support group of family, friends and colleagues but they just can’t possibly understand what I’m going through. Looking forward to connecting 😊
Newbie triple negative
Hi everyone I was diagnosed in December with triple negative bc. I’ve been visiting this wonderful forum probably daily, but have only now had the courage to join. I’m currently having fortnightly dose dense ac chemo, about to have my third round and am feeling really anxious about it. I found the second round a lot more challenging than the first and am worried about how the third round will go - and just looking for some support I guess. I don’t really have a question just wanted to join this lovely supportive network and say hi.
Newbie alert! First round of A/C complete - a few questions
Hi, Newbie here. Diagnosed on New Years Eve with a Grade 3, triple-negative DCIS in my left breast and axilla lymph nodes. Bit of a journey ahead - A/C, Taxol, mastectomy, and radiation. I had my first round of A/C on Thursday. I am recovering ok - Day 3 hit me like a freight train, but I gather that is normal? My scalp is already tingly, and today my skin (especially my face, chest and arms) feels dry, hot and sensitive, like after a sunburn, but I haven't been in the sun for days. What have you all used on your skin to soothe this? Is there anything that might also soothe my scalp? Conversely, the skin on my face is suuuuper soft, an unexepected benefit! Has anyone else noticed this? Also, is it true that what I experienced after the first round will be similiar in subsequent rounds, aside from cumulative exhaustion, or have some of you found that the side effects compound a lot each time? And does anyone know why I am thirsty to the extreme still four days later? I am so sorry to think that there are so many of you out there who are more experienced than I on this subject, but would really appreciate you sharing any insights you have. : ) Juliet
Final round ac has sucked the life out of me
Rant only. I survived the first 2 round A C without much side effects but holy dooly the final two have really knocked me for a six! Lethargic AF and getting tingling numb feeling in my left hand fingers tips dry eyes and mouth thrush coming in at at angles. And as for eating nothing tastes good anymore ☹ and super super thirsty all the time. Getting frustrated at life in general plus have to start the paclitaxel soon which not looking forward after this episode. Cancer is crappy 🤯🤯🤯
