Chemo 1 is underway, good o’l Tax again. It has been a hugely disappointing the last few weeks and I am feeling really distrustful of my oncologist. To break it down, he had me on a high dose of steroids (Dexamethasone) for 4 weeks when they were not required and I should have been weaning. Alarm bells started ringing when Nick and I sat down, and the oncologist took one look at my puffy frame and in an annoyed manner asked me why was I still on steroids and how many 'mg' I was taking. Now bare in mind I am still in a morphine-ultra chemical numbing haze and new at this, how the hell should I know? I just take what you told me. This car crash of a clinical visit had Nick lose his temper and walk out at the lack of organisation and had me in tears at the prospect of having to change treatment lines already! It turned out my oncologist's confident gamble in declaring there is only a 5% chance my cancer will be a different sub type (He thought I would still be HER2- despite not even having a biopsy) and proceeding with ‘Ribblo’ was the wrong choice. It transpired I was in fact borderline (HER2+). Now this is relevant because your care provider should absolutely be 100% sure of your cancer subtypes (ER, PR, HER2) before moving forward, as this will determine what treatment you can have, and ultimately affect your life span. Amazingly, he could not understand why I was upset. You know, after being told off for essentially taking what he told me (and it harming me), and finding out I was put through a full cycle of oral chemo before realising it was not suitable for the cancer... On top of this, I asked him to point to where my tumours are and he didn’t know exactly. This led to the secondary breast nurse searching on the computer for the latest scans. There were contradictions around Zoladex and he tried to explain how to ween off my dosage of steroids by ignoring me and explaining it to Nick. Not to mention I was terrified of going on Tax again, it absolutely battered me last time. Wait... Am I supposed to trust this guy with my life? Ha, yeah fuck that. This happened pre-lockdown and COVID was closing in. I was so angry but wanted to feel ‘safe’ in his care, so I compiled a document with questions and feedback of how unhappy I was with patient care including photographic ‘evidence’ for his contradictions and cock-ups. I send it to the care team. Unfortunately, My Secondary breast cancer nurse was away and I don’t think the oncologist seen this compliant. I did speak to two people, but they claimed to have never received the document despite me pulling up my ‘sent’ box then and there to prove it had gone... I wish I had the energy to fight this more but for now, but as Carolyn told me, I must keep my energy for this hard part of treatment and deal with it after Tax. I have attached that document if you are curious for the full extent of the screw-ups.
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A ' no holds' page about my life with incurable advanced Breast Cancer, in the hope it will give a realistic, detailed account to other young women going through the unfortunate illness.
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September 2023
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