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Kathyjane's avatar
Kathyjane
Member
5 years ago

2016 -2021 The Journey continues

Hi, It has been 4 years and 8 months since this journey of Breast Cancer started. 

I have been reading back over this chat and wow how that time changed my life and everything around cancer. 

So on July 28th, I went to Auburn Hospital for my operation under Dr ***. 4 hours into the operation she was notified that I had 44% cancer cells in my Sentinal Node so other nodes were advised to be removed. 23 nodes later,,, gone. This then brought my operation up to 6 hours. Recovery went fairly well. 

I was able to go back to work 2 weeks post op and did light duties and haven't stopped. 

Unfortunately, at pre-op there was no indication that I had an aggressive form of cancer so I had to undergo chemo, which was not discussed previously, only Radiotherapy treatment for 6 weeks. So fast forward to September 16 and I am going in for a Port a Cath insertion at Prince of Wales as there was nowhere doing them at the time I needed to start chemo. 

I had the first 3 lots of aggressive chemo and said no more. I was still working and no quite sure how I go through all of that but obliviously I did.  I then went onto 3 more doses of chemo and again said no more. I never wanted chemo in the first place and should of stood my ground but I listened to the Dr's as it was routine, well routine is not always right for everyone. Radiotherapy was also dropped to 16 days with 10 shots per visit, so 160 doses.. and yeah the boob is now fried and wont move..although it is getting softer to touch. 

So from Jan 2017 - Oct 2019 I got on with living. I ended up with Lymphoedema in the left arm,, not good but I have a great network with the Lympho Therapist and sleeves.  I was going really well, working, riding my motorbike and just getting on with things. 

In July 2019 I got a very sore left knee, thinking it was just arthritis I let it go for about 10 weeks. When the pain became so bad I went to a new GP who sent me for ultrasounds.... nothing other than OA. Ok, so lets do a bone scan just to have a look and see. 

Scan was done on a Monday, results were to be picked up on a Wednesday. We didn't find the answer to the pain in the knee, although there was OA but they did find 5 lesions in my bones. 1 in the skull, L1, L2, L3,L5. no symptoms at all. 
Ok, so where to from here. A new Oncologist (the last one and I did not Gel). New medications, Immunotherapy meds. Palbociclib 125mg and Arimidex 1mg. Three months later I had another bone scan to see how it was all going. Damn again, another 7 lesions. T11, S1, L4, Hip and Socket joints, and hip area. So all up 12 lesions. They did a biopsy on the S1 and I would not wish that on my worst enemy, it bloody well nearly killed me. The results came back as the same Breast ca as before so this was treatable. 

During this time in Oct 2019, I became a Nanny to my little man Archie.. I am so in LOVE. 

Fast forward again to 2021. A few more bone scans every 6 months, blood tests every month for ca markers, 21 days of Palbociclib, and daily for Arimidex. I am now 18 months into this next journey with Stage 4 Metastatic Breast Cancer. 
I still work as a Clinical Facilitator for Universities looking after RN Students,  although I feel tired all the time. I still ride my motorbike, hubby and I brought a Motorhome to start going away,. 

In 2018 I did a Cert IV in Celebrancy and became a Marriage Celebrant in March 2019 and I am about to go down the pathway of learning how to be a Funeral Planner/Director. I am currently a Funeral Celebrant. This is my business and I love what I do. I am also a Justice of the Peace now. So yes life is somewhat busy.... hahahaha... well totally busy but I love it and it will keep going as long as I can keep going. 

I am in the process (slowly) of planning my own funeral. It is not morbid, it is reality and I want to go out the way I want. My family will just follow my lead and plans. All going well, I hope to have a pre Funeral party and have all my friends and family there to see me before I kick the bucket, but I am also very much aware of living while I can. 

www.lovelisallaroundus.com.au
This is my website and it means I get to share my love, friendship and hope with everyone. 
  • Hi kathyjane,

    Sorry to hear that the journey hasnt been as hoped but do glad you are doing what you love and at peace with it all. This disease is a crappy deal - am i allowed to say that? 

    Will check out the website.
    Michele


  • I am So sorry to hear of the Mets diagnosis @Kathyjane ... You sound like an amazing lady with strong support from your family and friends.  I wish you well with your career xx

    They seem to be getting so much better at controlling BC Mets now - almost treating some forms of it more as a chronic disease, and I hope that you are not in any pain or discomfort. Xx. I have 3 close friends with BC Mets - and my husband was recently diagnosed with gastric Mets.  :( 

    Well done with your website!  All the best and take care xx
  • It’s a great website @Kathyjane. I‘m glad you’re moving on with life, and not allowing ca to dominate how you live it. All the best to you ♥️♥️
  • Thanks for sharing. Sorry to hear about your diagnosis .To many, us nurses seem morbid but in reality we are just realistic and to the point. We know too much and have seen too much shit lol.I have every faith that you will keep living life to the full. Take care x 
  • Thanks so much for all your comments on my post. 

    I am very verbal about this journey with so many people but it does mean a lot to me to make people feel comfortable with what is sometimes life for a lot of us. 

    Hubby and I just got home yesterday from Qld after a week away, although this was cut short due to the weather it was still a very nice break and I got to see my son who just moved up there. 

    thanks also for looking at my website. I am very grateful, it was not mentioned for that reason but it is something that may be of interest and maybe needed by some in the near or distant future. As I said I am realistic about it all. 

    Arpie, I thank you for your comments. No I am in no pain from the Mets but just the normal aches etc from Osteo. I do get right-sided rib pain but this is not related to the cancer.. it is the one thing I struggle with along with the mouth ulcers at the moment.