Changing treatment centres

[smca]

I'm really happy you had a good result...the journey is hard enough as it is....and advocating for yourself is not always possible.....fingers crossed for you.

[Jem68]

I’ve put request in and just waiting for it to happen.  Will be much easier on our lives and hopefully a different perspective of my cancers.  I have CT scan results Monday which i an nervous about but I’m only on 2 cycle of treatment.  They had me on immunotherapy but after 4th treatment didn’t see working and because not under PBS too expensive for them to keep going.  I was really disappointed about this as felt I deserved the full cycle to see if it was doing something.
I’m glad you changed.  Good luck 

[Peregrina]

Hello Jem68, I am happy to hear that you have started the process of changing treatment centres. I just cannot imagine getting through the difficult process of chemo without confidence in your treating team and the emotional support needed to navigate this horrible journey. I feel very blessed to have found a team of “Earth Angels” to hold me up in my desperate and despairing days. I can only wish the same for you…don’t give up ! I know only too well the excruciating wait for CT scan results…I don’t think it matters what cycle you are on, it’s really frightening. Hold the hope as we all feel the same, my thoughts are with you. I am so sorry about your immunotherapy treatment, it’s not fair, not just and I believe all cancer treatment drugs should be available for all on the PBS. This journey is beyond hard, beyond terrifying and already expensive with so many out of pocket expenses. Just my travel and parking costs a small fortune ! Please let me know how you go on Monday if that’s okay ? Stay strong and know that there are folk out there supporting you and caring about your struggles 🙏

[smca]

I don't know your circumstances...but for me (melanoma) it was first line on the pbs to do keytruda and my lung took nearly 1 yr (16 treatments) before anything happened in my lung (and it went completely) (and about 2 yrs before it affected my head tumors)...I am in queensland. Some of this immunotherapy is in its infancy and I don't think they (docs) have all the answers.

[Jem68]

Hi Peregrina

i was able to transfer and all happens next week.   Even one of the nurses said it was a good move to do.  
I like the idea of fresh eyes looking at me.  
hope things are going well for you now. 

[Peregrina]

Hello Jem68,

Great to hear from you….congratulations on your successful transfer to a new treating centre, sounds like a  really positive move. I am so blessed that I was able to change treatment centres, all the staff are caring, competent, empathic folk and I feel safe and now in very competent hands. It is so important to feel “held” and “seen” especially on this very difficult cancer journey. Next week I have my 7th chemo cycle out of 12. There has been some horrible side effect challenges, and I have stopped asking myself “what next ? “. I just take life day by day, expect the unexpected and do my best to survive chemo…..it really is wretched, feels more like dying than living some days. Wishing you all the very best with your new team. Stay strong. 🙏