I've been writing and rewriting this for hours and ended up deleting the vast majority! Sometimes there's oversharing to a whole new level...... So I've cut it down to the main things I'm trying to say (keep in mind I'm very, very tired and it can be difficult to express what I'm trying to say. As ever, some will get it and others won't.)
Two pieces of advice for myself to read before cycle 2 of chemo.....
After the initial 'polite boak' and feeling a bit crap, yesterday and today brought episodes of low blood sugars, headaches like I couldn't describe, nausea, chills, and a tiredness that almost can make it impossible to see straight. This change in symptoms, as always, fed into my overthinking mind.......sometimes I feel like I've developed a list of fears that would put the Cowardly Lion to shame! Thankfully though, we just work our way through each one. When an old one creeps back in then I use the skills I've already learnt. When a new one creeps in I usually panic, annoy the head off close family and friends, cry, and then learn to deal with that one too. Staying on the Yellow Brick Road. Not always skipping and singing, but always moving forward.
2. The definition of cocky is "Conceited or confident in a bold or cheeky way." Remember that when you're patting yourself on the back very early into your first cycle of chemo. When will I ever learn that everything keeps changing?? This is both a pro and a con. In reality, this is just life. It's probably just a bit harder to deal with when your life largely revolves around one, very unpleasant, thing. That in itself is something I'm starting to give serious thought to....... once I have s better idea of how chemo is going to look for me, it's going to be essential to go back to being something more than just 'brain tumour girl'.
Yesterday afternoon brought a different set of challenges....... low blood sugars, a headache like no other, shakes...... It's also really hard to eat when you've got a list of food ingredients to avoid that includes "concentrated yeast extract". What even is that??? Is it in bread? Pancakes? Cereals? Fruit? Plus my high protein snack staples of bananas and flapjacks are now out. I'm hungry but really too exhausted to eat. Sitting down to a big meal would be unthinkable, but I know I'm not eating enough, and my blood sugar levels clearly agree! All my routines are thrown into the air again. There have been panics and tears and drama....... and now, yet again, the realisation that it'll be ok and I just need to stop overthinking everything. Eat what you fancy (so long as it's not on the list). If you're sick then you'll know not to eat it again. Yes, make yourself get showered and go for a walk, but if you're truly exhausted then it's ok to be in bed the very odd day and even have a wee afternoon nap!
So today has consisted of forcing myself to eat small amounts every few hours, sleeping and being reminded how wonderful my family and friends are....... At one stage earlier I again actually began to believe there was a literal distress call that went round people close to me when I was struggling....... a 'She needs us"' WhatsApp group or something...... I've thought this before, but have been assured this isn't the case. In fairness some of those who were exactly what I needed today are not people who'd naturally be in a group together..... many wouldn't even know each other. I know I've said it before, but how do you know??? It amazes me every time! Clearly there are family and friends that I'll openly call out to when I'm feeling really unwell and am upset, but there are ALWAYS others who just pop up when needed most. Energies? Kindred spirits? I have no idea but I love that it happens.
So after hours of writing and rewriting an exceptionally boring blog, where are we?? Chemo sucks. A night out on tequila is way better, but unlikely to save your life. I'm exhausted and feel like crap, but I'm fine. I'm in my own bed, have been out for a few walks, showered, and able to blog....... Its undoubtedly hard work, but it's been hard work since 20 January. My body is killing bad cells and trying to repair good ones. Whilst still healing from surgery and radiotherapy. Isn't it amazing what our bodies can do?? I've struggled with the drugs from the start.... chemo was never going to be fun for me..... but it's fine, and I'm doing it, and at some stage it'll be a distant memory. I don't remember giving birth to my son almost 19 years ago. I don't remember the awake surgery I swore I'd never forget. I don't remember my first radio session. And I'm quite sure I don't remember chemo either..... though I will remember the stuff I'll be doing in between cycles...... gggggrrrrrr xxx
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