It doesn’t get better the more you say it, does it. Damn.
I’m in this bloody lingering place of limbo again. I feel so useless. I feel forgotten.
All I’m doing is waiting until they can scan me again in a couple of months. When you’re going through treatment you feel so awful physically but you feel good (or at least I did) mentally because you know something is being done.
I’m waiting on fate to give me some luck now. It’s out of my hands. Fate has not given me much luck previously. Fate is a bitch.
My story isn’t so juicy when you’re waiting so you tend to lose a lot of interest from followers. I’m not at the start of diagnosis where it’s a shock to everyone and I’m not dying right now so there’s just no juicy gossip to pass on. I’m stagnant with my diagnosis at the minute.
I’ve taken to reading a lot of cancer stories in the newspapers lately. It’s probably because they catch you with the title “woman, 22, survives cancer against all odds” or “man survives cancer by eating lemons”. They like to draw you in with the catchy and unbelievable titles…and man alive… Am I gullible. But to be fair once the cancer train has hit you its hard to pass over these stories.
You have to go careful when reading these stories in the media. I feel like everyday I am coming across some natural remedy that will beat cancer. Some story of some person who was on deaths door and took this magical natural remedy for a period of time and boom! They’re cleared! It’s so hard not to get wrapped up in it all and believe this magical cure can work because sometimes they give you false hope. I’m not feeling hopeless at the minute but I’m feeling realistic. I believe some of these stories are true but I’m also aware on how rare they are. I’m not opposed to trying some newfound hippie dippie cure if it works I would try absolutely anything to survive this. I’m very much aware of my internal ticking clock that cancer is now dominating. Tick tock, tick tock, tick tock…
I’m not going to tell you what hippie dippie remedies I’m trying because I don’t know if it’ll work and I don’t want to give others false hope. I’m also doing it for other reasons too that aren’t just related to cancer.
My body has aged. I don’t know how old my body is now but it’s certainly not the nearly 30 year old I am. It’s probably at least doubled in age. I wake up in the mornings unable to move my hands straight away. There are pains in my knuckles. It takes me a good couple of hours to loosen up in the mornings and feel like I can start the day. My knees at the end of the day ache. Like deep down in the bone hurt. Bending to sit hurts and getting up and down off the floor now means I make those old people noises I never did before. If I’m really tired they sometimes give way and I get a bit unstable with my balance.
These hippie dippie natural treatments that you hear about will never be researched further if they do work. Drug companies can’t patent a natural formula so it’s not profitable for them. It’s all to do with politics. But I’m also aware that if it did get to a serious stage where I’ve exhausted all medical treatment options I will never be offered a clinical trial. My cancer is just too rare. Clinical trials are for the “popular” cancers.
I am doing my own thing. I do my bit of research and I choose my own path. I’m not shunning medical treatment. Please don’t interpret this into something else. I’ve finished my treatment so it will not affect any medication or treatment plan. I just feel like I’m waiting on something that’s out of my hands and I want to take back control.
If I have to go back onto treatment then I will talk to my consultant or I will stop what I am doing if I am advised to. I still have my faith in my medical team. I just feel like because I’m not dying right now I’m not important to them. Which is great! It is! I’ve come to the other side that I thought I’d never reach but I’m also in no man’s land.
It’s hard being left with your own thoughts. Your mind can be so torturous sometimes.
On a happier note, I went to a wedding on the weekend. My best friend of 19 years… Yes, Emily… That is correct, 19 years! Got married! I was super excited for the weekend not only for her but for me too! When she first planned her wedding I could not give any solid answer to her RSVP because I didn’t think I’d be well enough. At the start of her engagement it was hard for me to see 7 days ahead let alone 8 months! Wow… 8 months. Look how far I’ve come! 8 months ago I had just been told my cancer had gone metastatic and I went back on an immediate chemo plan.
So with all these wobbly moments where I feel lost, forgotten and unknown I just need to remember how far I’ve come. How much stronger I am physically and mentally now.
This post originally appeared on Happy Smiling Cancer Girl on March 6, 2018. It is republished with permission.