When the cancer clock keeps on ticking

Cancer…
Cancer…
Cancer…
It doesn’t get better the more you say it does it. Damn.

I’m in this bloody lingering place of limbo again πŸ™„ 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 πŸ˜‚ …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 new found 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.

Its 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.

When you become a real life zombie

I think this one will be about how chemo makes me feel. It’s a difficult one to explain but also it might be something that not everyone feels when they have chemo. This is my reaction to the drug. And it’s difficult to explain when the effects have worn off because I try my hardest to remember how it makes me feel but at the time that’s all I feel but when I’m better I forget. Sounds crazy, right! But everything is so easily forgotten when you feel better.

So there is a thing called chemo brain. And I guess that is what I’m suffering with at the end of the day but that’s not really what I thought it would be called. Chemo brain sounds like you’re forgetful or it affects your mental ability… And I guess in a way it does. But my experience is nothing to what I imagined.

So the day of chemo my reactions are all pretty immediate. I generally get a huge dose of antihistamines, which is basically a syringe full of Pirton. This is to help my body cope with the chemo paclitaxel… You know, first time anaphylaxis. This prevents any reactions occurring but it also makes me very very drowsy. So pretty much for the day of chemo I’m in and out of sleep. It’s a great way of killing an 8 hour day but it still drags… And my poor mum still has to suffer through it along with me.

One of the first things to change with chemo is my taste. This doesn’t normally last. Just for 4-5 days. I’m not sure how I can explain it, it’s like I’ve got wax in my mouth or my mouth is all cotton wool like, I can’t taste flavours as well, and things aren’t as appealing. I struggle to eat meat at this point coz the texture of it can be very off putting.

Followed closely from the tastelessness is the nausea. This is probably a big factor to the chemo reactions. As I suffer with nausea this means that my appetite reduces. It’s tough to find what I fancy to eat and I try so hard to eat what’s good for me. I have 4/5 different types of anti-nausea pills which help combat any actual sickness but it makes my mouth even more woolly and changes tastes even more.

Chemo affects you mentally too. I go very spaced out for a few days. I find it better on these days when people don’t talk to me. It sounds so silly but I find it so hard to concentrate on texts and function on what I should be saying. It sounds so crazy, right! It’s like there’s a massive fog over my brain that prevents me from focusing properly on what I should be doing. I zone out easily. I literally become some sort of chemo zombie. I don’t just think it’s in my head though. It weirdly affects my eye sight. Not in an awful way and it only lasts for about 3/4 days after and then I’m fine I just get this ring of haze around my sight and this makes focusing difficult. It’s like my brain just gives up trying to focus on what I should be doing.

I become a ghost to any social media and friends seem to know they won’t get a lot out of me on those days.

It all sounds so awful what I have to deal with when you say it out loud but you just have to deal with it. This is my life. If I want to be better then I have to deal with these after effects.

I have to apologise in advance for this post too. I’m still very foggy headed this morning so this post has taken me longer than usual to write and I’m sorry if it drags off in weird directions or doesn’t make much sense! It’s a real life struggle for me this zombie brain thing but it’s easier to explain when you’re actually mulling yourself through it then if I write it in a few days time when it’s a distant memory.

A life of crackers and coke

Well what a week it has been… It seems a bit unreal that everything has happened in the last eight days. It has been one of the longest and saddest weeks of my life.
Exactly eight days ago I felt healthy. I thought I was in recovery, I was slowly getting my life back and adjusting to my new way of life. I was back seeing friends, working a few hours, easing myself back into the working world.

Things couldn’t be further from that now even if I tried. The few hours of work I was doing I’ve had to give up. It’s too risky being around people when I’m having chemotherapy. I’m more susceptible to infections and no offence… But people are the worst when it comes to making sure they don’t miss their appointments “oh, I’m sorry! I was on my deathbed but I just had to come in for my nail appointment” or “I feel absolutely awful but I made it… Please give me a medal and let me infect you with my gammy germs” I joke… But you don’t realise how gross people can be… Until you work with them. Don’t get me wrong, I love my job but it’s just way too risky for me. I love it but not at the risk of my health… Even more!

So I had chemotherapy last Wednesday. Yep… Very long and boring day. I’ll be getting 2 types of chemo, Β paclitaxel and carboplatin. They’re both chemos I’ve had before. Back in February just after I was first diagnosed they put me on an emergency chemo program to get treatment started. Treatment didn’t go well… My first session I went into an anaphylactic shock. It was awful. Basically my body shut down because of the drugs. It’s pretty common apparently when administering paclitaxel, it’s a 50-50 on if your body will accept the drug or reject it. After a massive dose of adrenaline they counteracted the reaction and I was back to normal. They decided, for that day, not to give me paclitaxel and just gave me carboplatin. The following week I had both again just this time the paclitaxel was administered slowly so my body could adjust to it. Hence why chemo is an all day event.

So Wednesday I was up bright and early to be ready to start treatment at 9am. I’m having chemo every 21 days this time round. At the start of the year it was an emergency program to get things started and chemo was weekly with the drugs being weaker. I was actually one of the lucky few before when chemo actually made me feel better. I would have a couple of days after where I could go out and see people.

I don’t think I’ll be so lucky this time round.

Chemo made me pretty tired afterwards. Even though I slept a majority of the day I was up there for over 8 hours. I can’t keep my attention to anything so reading, watching TV, colouring in books or whatever doesn’t help. All I seem to do is sleep.

The days after made me extremely nauseous. I have anti sickness pills that stop me from actually being sick but the queasiness is always there. When you’re queasy you just don’t want to eat… Which is the worst when you’ve got the biggest battle of your life on your hands ahead. Anything I do manage to eat goes straight through me… Sorry for being so graphic πŸ˜‚ but this is the reality of it. So with the weekend of feeling grotty, not eating much and not keeping much in its obvious that I’m gonna drop weight.

So this week I’m trying my hardest to eat more meals a day and snack hard. But it’s not easy… My tastes have already changed. Things I liked before I can’t touch. Flavours aren’t the same and it’s difficult to figure out what I actually fancy.

People have been really sweet before and given me advice of diets I should try to help bring my body back into balance which has been incredibly thoughtful and I’ve been so grateful but I kid you not… If anyone suggested things this week I probably would have snapped πŸ™ˆ I feel awful for saying that because I know they’re only trying to help but honestly if there was a way, I’m pretty sure I would have tried it. And to be quite frank, I couldn’t give a fuck anymore! I know! I’m sorry!! But for 29 years I have eaten so healthily. Probably better than you! Home grown veg, the right balance of protein, carbs and greens. I’ve been good! And look where it fucking got me! So screw it. I’m eating what I damn well please.

You’re probably thinking I’m sat here eating gateaux and sundaes with ridiculous amounts of saturated fats, refined sugars and numerous E numbers… I wish. Nope, just good old Jacobs crackers and a can of coke. My good old go to buddies that seem to be my safety net foods.

I expect, as I go further into the program it’ll get worse. But let’s look on the positive side for once. That’s one treatment down. Just another 5 to go… πŸ’ͺπŸ»πŸ‘ŠπŸ»

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chemo session 1 of 6 ✌🏻