Stop the ride I want to get off...

Saturday, June 25, 2016

Chemo, here's how it's done...

So I'm sitting here starting this blog post to kill time before Judie and I head into hospital for my fourth cycle of Eribulin. I’ve had some good news, the tumour markers have been steadily dropping, the pain in my side has vanished and I've had a CT scan. Hopefully those results will also be good, but I never like to count my chickens before they hatch so we have to wait till clinic at the end of June to hear about that.

Many of you have asked what it’s like to have chemo and sometimes people say stuff that makes me grin as I realise how much the media has portrayed chemo. I thought I’d give you an idea of how it all works from my perspective.

Firstly, chemotherapy can only be given when your blood counts are at safe levels. This becomes more of an issue the longer you have chemo and the more times you have to undergo treatments. So at some point before chemo you have to have a blood test, sounds simple enough, but as you undergo more chemo treatments your veins get damaged and this process gets harder. I was having a really rough time with this until they put me on a nerve painkiller for another side effect. Blood tests no longer so painful woohoo. (Note: I have undergone three separate sets of chemo treatment in 11 years)

When I get to my chemo unit I check in with reception and, on our unit, I go sit in “The Corridor” and then wait, and wait, and wait… sometimes you get lucky and the wait isn’t too long. But to be honest, I understand why the waits happen, I know there is not a lot that can be done. A prescription might say this infusion takes an hour, sometimes it will take longer. Some chemo drugs can only be made up just before they are given and some are so expensive that they aren't made up until they are sure you are going to be able to have them. All of which throws timings out. Waiting is part of the cancer game.

Finally, I get called into the Day Unit, find a comfy recliner chair and get settled. Then the nurse comes and between the two of us drugs are all sorted out. Ones to take now like anti-sick meds, steroids to prevent allergic reactions and then my take home drugs. Oooh wait, I forgot something very important, I always take someone with me. I call them my chemo buddy and I have two very good friends who have being doing this for me. It’s a very special skillset required to be one. They have to be able to cope with me getting more and more nervous and therefore more jittery. They need the patience of a saint and the ability to come up with numerous topics of conversation. Also, the ability to realise when not to talk is also useful, as sometimes after the anti sick you can get quite dopey. Finally, they need to have an absolutely, distracting story for when they are putting the drip in. Paula and Judie have come up with some brilliant ones. I’ve been in stitches laughing.

Once sorted you’re left to let the anti-sick work. Some people will have had a drip attached at this point and their anti-sick given that way. Because my veins have been wrecked by previous chemos I hold off on the drip till the last minute and take mine as tablets.

Sometime later, depending on your drugs, back comes the nurse. At this point I get my drip put in and then I have my chemo. Fortunately, my chemo takes only five minutes, so between that and the flushes I'm done in about ten minutes. It feels cold as it goes in and I get a weird taste in my mouth but once the infusion is done. I'm released from the drip and head home feeling drowsy from the anti-sick drugs.

So that’s having chemo, the simplified version. It can be painful on the veins, but if you tell the nurse they can adjust the flow rate and make it less painful and protect your veins. Some people are strapped up to drips all day, Amy used to have a chemo that required hours of pre hydration before the chemo was given. Each case is different, but for the most part, it’s fairly simple and mostly boring, sitting around waiting for it to be over. Anti-sick drugs these days are very good, and anyone who starts feeling even a little bit sick needs to talk quickly to their chemo team for help. The sooner you get more help the more likely it is they will get it and keep it under control. I also find if it’s only a little bit of nausea that eating something and then sleeping lots tends to help too.

Now to talk about the tough part…

The days after chemo, when this poison that is killing the cancer, is also attacking all the fast growing cells in your body. So that’s things like hair, nails, I really don’t think about other places but you can’t ignore the lining of your digestive tract from the mouth to your anus, it really is just one long tube. Not only is this getting seriously irritated by the chemo, but all the drugs you take have different effects on it. It becomes a complicated balancing act between diarrhoea and constipation. Eventually you figure it out and for the most part can control it.

That’s the more obvious effect, but your body is now using the chemo to fight one almighty battle inside you and it shows. I get incredibly tired and this doesn't really go away. My energy levels are limited and when I crash I sleep for hours. But again you learn to manage this, you know your limitations and you work with them. Sometimes you have something fun planned and you push through, then spend a few days catching up again. But it’s always worth it, after all, what’s the point in having the treatment if you don’t get to have some fun in life. This Day 1 dose, Day 8 dose and then Day 22 start again. I had to put my foot down, even after I figured out how to stop the terrible mouth issues, I was not recovering by Day 22. Fortunately for me it wasn’t much of a battle with the Doc as my blood counts agreed with me. So now I'm on a 28 day cycle, which seems to be giving me a couple of weeks where I mostly feel normal.

I don’t think I’ll ever walk 10,000 steps a day again, which saddens me as I love walking. I'm not sure they will ever let me go swimming again in a public swimming pool. Even walking Jinx is hard work, not only because of the energy needed to walk, but he seems to know I am weaker and can be a tad over protective and reacts to other dogs with much less patience. But I have a wheelchair so I can go further afield with friends, I can hire a mobility scooter in most towns if I want to explore and my blue badge means I can park nearer to the places I want to go. Which means I can spend more of my valuable but limited energy on the fun stuff.


OpenID simplyjaye said...

Excellent post! There's so much people don't know about the details of what it is to have chemo, that never gets discussed, let alone how it is (mis)portrayed in the media that to hear someone just go through them gives great insight. From my own perspective as someone who has always been here for you in spirit and only occasionally in body, my own education has increased exponentially just in the last several months, and still there are details that I don't know or that I get muddled, so even those of us who have been with you through these journeys can learn something straight from experience.

And I admire how aware you are that you need balance because what is the point on going through all this if you can't have fun and live life to the fullest amount you are able?

Love and hugs!!

2:52 pm  

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