(Hopefully) At the end of my journey

CatPie
CatPie Member Posts: 4
edited August 2019 in Newly diagnosed
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 
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Comments

  • iserbrown
    iserbrown Member Posts: 5,540
    Wonderful uplifting post - good on you for sharing

    Sending you a virtual hug
  • kmakm
    kmakm Member Posts: 7,974
    Awesome post! Not saying "well done", but sending a virtual high five. K xox
  • kezmusc
    kezmusc Member Posts: 1,544
    Welcome @CatPie,

    Nice work lovely and a great post.  Thanks for sharing.

    xoxox
  • Doin'it
    Doin'it Member Posts: 377
    Good on you @CatPie. Thanks for sharing. I’m sure it will help newbies to read this xx
  • primek
    primek Member Posts: 5,392
    Woohoo for active treatment over and thanks for posting. 
  • Sister
    Sister Member Posts: 4,960
    I think that's a great post @CatPie None of it is plain sailing but it's doable for most of us.  
  • jennyss
    jennyss Member Posts: 1,950
    Dear @CatPie, Thanks for your post and mantras and 

    from jennyss in Western NSW
  • Kactus
    Kactus Member Posts: 9
    Thank you so much for sharing. I’m only 2 rounds into the same chemo regime but feel like I can relate to a lot of what you said. I’m going to look back to these words when the going gets tough xxx
  • youngdogmum
    youngdogmum Member Posts: 250
    @Kactus I'm coming up to 7 weeks post final chemo and I look back at the memories of suffering on the couch and having multiple hot baths a day for the pain caused by Taxol - I can't even recognise myself in that person now! Keep going it gets there's eventually xx
  • Kactus
    Kactus Member Posts: 9
    Thanks for the encouragement @youngdogmum. I’m feeling nervous about the taxol the more I hear about the side effects but glad you’re on the other side of it. Looking forward to being there too x
  • kezmusc
    kezmusc Member Posts: 1,544
    @Kactus For some of us the Taxol is much kinder than the other poisons.  I had minimal side effects on taxol. Minor neuropothy that only lasted a couple of hours after treatment.  A bit sensitive to the sun and  a skin rash (that one is not very common but I have weird skin to begin with).  Apart from that, it was so so so much better than AC.
    Fingers crossed you sail through it.
    xoxoxo
  • Kactus
    Kactus Member Posts: 9
    Oh good ☺️ Thanks @kezmusc x
  • Mahaica
    Mahaica Member Posts: 26
    I am about to start taxol I am abit nervous. My experience with the AC sometimes I suffer from the strong effects but overall I can't complain. Fingers crossed I am hoping and praying my Taxol experience will be the same or better. 
  • Sister
    Sister Member Posts: 4,960
    @mahaica In some ways taxol is easier than AC but it does come with it's own challenges.  In my experience, it doesn't have the same debilitating effects that AC can have but bear in mind that your body has already taken a hit so you're going into it tireder.  Taxol is generaly every week so you don't get the chance to recover as well so I found the fatigue cumulative.  You're probably already aware of the potential for peripheral neuropathy but your medical team should keep an eye on that if it develops.  I also found that this was when the tastebuds went on holiday.  Remember that while 12 is generally the optimum number, that is what they aim for, not what is known so, potentially, 9 treatments might be just as effective.  If you got through AC, you're on the downhill now.  I think it was @kezmusc who said you count up with AC but down with Taxol and she was quite right.
  • Mahaica
    Mahaica Member Posts: 26

    I agree with your comments, I am not planning for the 12 treatments ahead I am thinking maybe 10 and then a break and the radiation. I really want to finish at the end of the year so I can have January off before heading back to work in February. Thanks ladies