I just want the rain to stop. 

I kind of knew deep down in my heart that treatment wasn’t working as well as it should be, not because I’ve felt unwell or had any symptoms, I suppose it was just a feeling. 

My latest scan results have shown a new area on the liver which is enough to warrant stoping the treatment I’m on and changing it. Cancer should not be growing on any regime even if it’s only a small amount or small area. So the short break of chemo I got whilst on Herceptin and Pertuzumab were fairly short lived-sure sucks to be me right? 

I immediately knew that the news wasn’t going to be great when a nurse or whoever she was came in the room and just sat down before we even began. It immediately made me out me on edge and made me feel angry inside because that’s what I do when I’m scared, I get defensive and angry. I didn’t ask for support and certainly did not request this lady I’d never met before sit in on my appointment and give off the most awful vibes regarding my thoughts on holistic treatment, holidays and insurance. She may as well have rolled her eyes at me because she was doing that inside believe me! Anyway I told her I didn’t want her help or support thanks I’ve been living with this nearly four years and never have they brought a nurse in the room even when I got my secondary diagnosis! Sometimes if in doubt, just ask the patient beforehand if they want more support,not presume things. Cancer is scary but also quite a private thing, and trusts need to understand that each patients needs are completely different; one size does not fit all. I don’t want a lady twenty years older than me sitting there thinking thank fuck this isn’t me poor cow- presumably she’s never had cancer, she could never ever understand how I feel. She honestly cared more about her dented ego i.e not being wanted, than my cancer. Anyway,  I just wanted to proceed with this rant about today’s appointment which didn’t start off so well although I must commend my young doctor who was excellent and totally calmed me down when talking about new treatments (although I’m not totally sure he’s a huge fan of me going on holiday so soon but obviously I got my own way and I’m still going, you didn’t think anything differently did you)?

So. What’s next for me? Well I could hardly believe it when he uttered the word Kadcyla. It’s a kind of targeted therapy/chemo which is much kinder than chemo and well tolerated like Herceptin. It’s a fairly new drug and works very well on my type of cancer. Unfortunately it’s a drug that’s in the news at the moment because it’s been taken off the CDF, as it’s deemed unaffordable. There’s a petition going round to try and get the drug reinstated, the cost lowered or both I’m not totally sure, but the fact is that in the next eight weeks, it might be gone for good. Women like me, young women in their twenties  and thirties as I, probably won’t get access to the drug because the government don’t think their life is worth the ninety thousand a year price tag. Yes I know it’s extortionate right but who wants to die young all because of a price tag? For me it looks like I’ll be saved and I secure the drug just in time, but what if I’d been two months later and they told me that the best treatment for me was not available? It doesn’t bear thinking about really does it?  There I was in the car mulling this over thinking to myself I’m actually really lucky to be getting this drug but in floods of tears that other people may not be so lucky which breaks my heart and hurts me so deeply. Was it an omen that this has happened now? I don’t know but all I know is I’m massively grateful to the NHS and my trust for fighting for me and mostly giving me that all important hope-that can be cruelly dashed at anytime for so many women. I’ve said it before and I’ll say it again. If you have hope in your heart you can get through anything. If someone takes that hope away from you then you have nothing.

So an extremely shitty 2017 news wise, BUT, and a huge but, I feel well. This is the most important thing of all according to my oncologist. It’s not solely about  what the scan shows it’s about how you feel inside and well, if this cancer is starting up again I’m blessed and fortunate to feel good and leading a full life. It’s on to the next treatment, which is scary because when one fails you become very frightened and worried that the next one won’t work either, but I cannot allow my mind to go down that road-it’s very dark and pessimistic, and I must find the courage to believe in myself and my body-this will work for me and I will be stable again. Otherwise, what’s the world going to do without me? Ive still got a lot more travelling to do… 

x

If you want to help women in the future like me with Breast cancer live longer and spend more precious time with their families, please sign this petition. Thank you. 

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One Comment

  1. Denise Paulsen

    Phew! I’m so relieved to read that you’re feeling well. And the doc was right to remind you as much as what a scan can reveal, more importantly it’s how you feel doll. So this is great news for you always of course, but especially with Bali in mind. You sound feisty and spirited. That’s the stuff! It’s about self-determination. And you’ve got it to spare. Personally I can’t wait until you’re there listening to the waves, and telling us all about your adventures. Bliss. Love you sweetie. Please look after yourself. bbfn. xoxo

    Like

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