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Koncon25's avatar
Koncon25
Member
3 months ago

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.  

 

10 Replies

  • Hi. All the best with exploring the options and hope it works out for you.  Have you had any contact with Choices at the Wesley hospital? A great support service and they do offer some online programs if you can't get there. 

  • HiKoncon25​ I am really sorry to hear about your diagnosis -  sending a big virtual hug your way.
    What a talent you have,  your wry humour and musings on effective alternatives, had me crying/laughing. 
    Turning to the question about treatment- My breast cancer was treated with chemotherapy, surgery, radiation, and then a bit more chemo immunotherapy again, 17 doses over a fourteen month timeframe and now, like a lot of people, I take a hormone blocker.  
    It was very annoying having to pause some of the plans and to change gear. 
    Although it is no cake walk, having chemotherapy, was, for me, “doable” although I had a lot of tedious and unwelcome side effects. I think it helped me once I knew it was working;  I had the first 6 doses prior to surgery to shrink the tumour and after dose 3 I had ab Ultrasound and there was evidence it was very effective. My radiation after surgery was tiring but not (in my case) painful. The treatments did however have a cumulative effect. I didn’t have much in the tank by the end. 
    I think the big thing that helped me get through a long haul year was participating in an oncology  exercise rehabilitation program. At my most depleted it helped me feel like being strong again was a possibility. 
    Yes, telling people is an interesting thing. Definitely no one size fits all script. I didn’t mind sharing the news face to face, or even have my friends share it with others in a non sensational way -  99% of my family and friends were supportive and sensitive.
    I spent a lot of time sending texts and on reflection I wish I had asked my husband or a friend to be the person who sent out a brief bulletin on WhatsApp.
    It might not be a source of exhaustion for you, but I was surprised how taxing dealing with any large group of people became (more than 4!) during the chemo and radiation treatment.  
    I am sending you all good wishes :-) 



  • Mez_BCNA's avatar
    Mez_BCNA
    Community Manager

    Thankyou for joining our community and very sorry to hear of your recent diagnoses of breast and colorectal cancers. We hope you have a great support network around you.

    We appreciate the thought-provoking discussion about different treatment paths and everyone would agree it would be wonderful to have a permanent cure for cancer that is not as invasive. 

    We felt it was also good time to remind people about the very distinguished differences between complementary and alternative therapies, especially when it comes to serious conditions like cancer.

    Complementary therapies—such as acupuncture, massage, or meditation—are used alongside conventional treatments to help manage symptoms and improve wellbeing. These can be beneficial when used safely and in consultation with your medical team. Learn more here: Complementary Therapies and Breast Cancer – BCNA

    Alternative therapies, on the other hand, are used instead of proven medical treatments. This can be dangerous, as these therapies are often unproven and may delay or replace effective care. BCNA strongly advises caution and encourages people to speak with their healthcare providers before considering such approaches: Alternative Therapies – BCNA

    For a full overview of both types and how they may interact with conventional treatments, this article is a great resource: Complementary and Alternative Medicines and Therapies – BCNA

    The final word on this topic would be to remind everyone to consult your medical team before starting any new therapy or supplement. Some can interfere with treatments like chemotherapy or hormone therapy, even if they seem harmless. Please feel free to reach out to discuss further Helpline 1800 500 258.

  • Koncon25​ When you find that goat please let me know. I am on a lifetime subscription to chemo and would love to stop. However, until they find something better.....

    I just had one treatment off chemo due to a colonoscopy and polyp removal (unrelated to BC) and it has been nice to start feeling normal again but tomorrow I start back on due to my BC being very aggressive. Hang in there, the time goes quicker than you think. Get out and about when you feel like it and stock up on your home based hobbies for when going out is beyond doable. Craft, reading, television show catch up, jigsaws, puzzles. Cooking if you are up to it.

    Sending big hugs. We are here for you so please feel free to rant away. And remember, I get first dibs on your goat.

    • Koncon25's avatar
      Koncon25
      Member

      Hi Blossom1961

      Thank you for your reply. I love the reminder to enjoy life and enjoy crafts and hobbies, because I do love the crafts and the hobbies. I guess the thing to remember is to continue to love and live life to the fullest, despite the circumstances. 

      I'm glad you only had to do one treatment for your colon. I wish you strength and love for the BC treatments. If an Aztec goat would help, I would ship you 10!  

      I am glad to find this space that allows us to rant, I had a moment, and now I'm back to reality.  Darn it.  

      Tomorrow I am with the radiation specialist to plan the next stage, with the actual treatment to start two weeks from then. 

      I was not keen and I'm still not keen to go through the radiation, but I think I will go ahead, but I'm going to permit myself to disagree if I don't think it is working or if I get too sick to continue.  I will take a break.   Not sure if I am allowed to take a break in mid-treatment, but if I have to, I will. 

      In the meantime, I will keep studying, the process, the meds, and the technology.  The more you know, helps. 

      Can I ask, if you or if anyone found it hard to let everyone know? 

      I have only told, mother, sister, and 2 friends (my sons know).  I am surprised at how difficult I am finding to let everyone know, I have a large family, 11 siblings,  and a large friend base, but I feel too traumatised to share.  

      Wondered if im the only one who feels this way.  

      Thank you for letting me share/rant and imagine the milk of an Aztec goat.  

       

       

       

      • nicholsmi's avatar
        nicholsmi
        Member

        Hi Koncon25,

        I wish you all the best with your "clown" experience, in all of your musings and genius comedic writing - i think you articulated the very rant i wanted to say but didn't have the vocabulary for. 

        In regards to your question- letting people know?  I live here and all my siblings live in NZ.  I have to say the best advice I've was given by my GP at the very beginning of my "clown" experience (diagnosed good Friday this year) was....... you don't have to tell everyone - in fact keeping your circle small helps you! You, yourself have to process this first, when you share with people - they have questions and many of which you don't have the answers for, and as you go further into this experience you find you have no capacity.  Your friends and family ask out of concern but it can feel like "another thing" you have to manage.

        I too have a large family 11 siblings as well.  I have only shared with my 3 sisters, my daughter, and 2 girlfriends who are like sisters.  My sisters and daughter share the immediate support and care (like FIFO workers, flying abroad or interstate each month as one tags in and tags out - im blessed that they have committed to this journey with amd for me) and have set up a whatsapp group where we post appts outcomes and daily feels (including the fun stuff - sometimes we find ourselves post appts at a lovely cafe or restaurant).

        They take care of the appts schedule and tell me where to be (someone always accomopanies) and they also, update the girlfriends so that when i catchup with the girlfriends we are just talking life hows the kids are how life whats the goss. The girlfriends are up to the minute on treatments/appts/restaurants and I don't have to relive it again but we can talk about that too.

        If I meet a friend or family member that hasn't been included in the initial commu cations of my "clown" experience I tell them if we have face to face meets and let them know that I haven't widely shared and I would appreciate if they could respect that so that I may share when I'm ready.  I'm not ashamed or embarrassed i simply would like some control on the narrative that is about my experience.  Let's face it thats all you have control over when meeting this "clown".

        In a large family its odd not to share.  Everyone knows everything so its piqued the curiosity of my brothers and then extended family.  Ive soothed their curiosity and explained that yes its serious but when i have my strength back i will include them or if they make a visit here i will then share with them.  

        I also asked for my workplace e not to share with all.  I will manage that when I return to an in office moment which is not likely till next year at this point in time.

        I went to a support group held at the ONJ Wellness centre in Melbourne, and we discussed this and it was a theme for many who were navigating this very topic. Many agreed that keeping it small or setting up a trusted group or party to communicate to others on your behalf were home of the optiosn they chose.

        I appreciate everyone will be different in choosing their path and this is not right or wrong.  For me though I found the beat advice was to keep the circle small o  who you share with or invite in as it has given me so much more peace in the mental gymnastics that are at play here.

        I wish you all the best on your experience back to health and vitality.  You sound like a pretty good G.O.A.T yourself...... you do know that acronym is Greatest of All Time!

  • Condolences - yes, it's all confusing and unfair and no-one needs it. My partner has just been diagnosed with cancer of the tongue (no, he doesn't smoke). The treatment is utterly fascinating, complex, technologically brilliant if it was happening to someone you don't know at all, but will leave him speechless (unknown for how long) and having to relearn how to swallow. Like you, his 'option' is not really an option at all. A great many skilled people are doing a remarkable job, explained in careful (if excruciating) and patient detail, in a serious attempt to extend his life and provide some quality to it. This simply could not have happened a comparatively short time ago. So yes, we do have something better. Just not perfect.

    Unfortunately, as you doubtless know, the things that pop up on your social media are not real. Nor are doctors and 'Big Pharma' all over the world conspiring to keep easy cures from us. Hope springs eternal and we would love to believe there is some easier path. Or at least not something as overwhelming. How people react is different - even for people with the same kind of cancer (or even two). I've never had radiation and can't speak of that (although I will at second hand soon perhaps), but chemo does vary a lot. I was one of the 'no nausea, no fatigue, go to work' brigade - keeping life as normal as possible worked for me. I also found that asking questions was useful - the more I understood about what was happening, the better I could cope. Not brilliantly or even always effectively, but a bit better is not to be sneezed at. 

    Treatment passes - you don't think it ever will but it does. And fingers crossed, so do your cancers. You may find talking to a counsellor helpful - I certainly did. Your oncologist is focussed on your body, and if a successful outcome is possible, will want you to grasp it NOW but your emotions and mind take a licking through this too. A professional who is not a friend or family member can provide a welcome outlet for your rants and may even be able to clear the confusion and frustration sufficiently to let some light and some insights in.

    Keep breathing. Deal as much as possible with day to day, not next week. Small steps can cover a hell of a lot of ground, ultimately. Very best wishes.

    • Koncon25's avatar
      Koncon25
      Member

      Thank you Afraser, 

      I am sorry to hear about your partner's diagnosis. I do wish your partner a quick recovery.  What a massive life change.  I had a friend who had cancer of the tongue; she has recovered wonderfully now. 

      She had to learn to speak again, not sure about the swallowing, but she has come through in remarkable fashion.  This was quite some time ago, and I never knew if she had to have chemo and radiation together.  

      Funny how now I want to know more, but at the time, I didn't think to ask; I didn't know what to ask. 

      I am of the mind that if they can fly a man to the moon, they can find a permanent cure to cancer that is less invasive and toxic. I hold on to this as I strongly believe it is possible.

      The reports from South Korea are true reports, including the one regarding Bee venom.  I have been learning to read medical journals.

      There are some incredible breakthroughs taking place. I don't trust big pharma as far as I could throw them, but the man in the lab working diligently with passion for a breakthrough, he or she I support.  

      I like to rant, whether anyone wants to read or not, but I do not want to offend anyone, but it is a good way to let it out.  I have yet to find a good counsellor; I have access to a team, and I will get to them.  

      I am grateful and thankful for this space and wish you a good evening. I'm off to relax and read about metabolic cancer treatments, Gerson treatments or the Gerson diet.  Also, an incredible doctor out of Boston University Dr Thomas Seyfreid.  Very interesting stuff.  

      💓