Methotrexate is seriously a walk in the park compared to my lovely Cisplatin/Doxorubicin combo from the first week.
I mean… I guess I should start from the beginning.
So I come in on the Monday and I have to be here for pre appointments with literally everyone, checks, talks, find out about my drugs, etc. Then I have to start taking my first tablets. They’re a bit of a pain, not going to lie. I have to take them every 6 hours starting midnight that night. So lots of alarms throughout the day and night to make sure I don’t forget. I have those for 2 days and then they switch to other ones which take over the 6 hour slot, and I take them until they tell me to stop.
I also have my thousands of anti nausea tablets (but less than last time).
So on the chemo day (Tuesday) they set me up with a backpack of hydration at 8:30 am and send me off, and then I go back at 12. The chemo itself only goes for 4 hours. And I sit in the Ambulatory Care ward for that. And the chemo is bright yellow! Looks pretty cool (and yes, I wee that colour yellow for a couple of days after). I feel radioactive.
Then I go back to the Cotton Rooms and pretty much spend as many days there as I need to until it gets out of my system. I need to go back every day for blood tests, and to refill my liquids.
I also once again need to log all my liquids in and out. And on top of that this time, I have to use a dipstick to check the pH of liquids out. And monitor it. And as soon as it drops below a certain pH I have to take two sodium bicarbonate tablets. And if it goes below another pH I have to take 4. Then if it goes any lower I have to call them immediately and rush over and get a sodium bicarbonate transfusion.
This is… mostly ok when it’s all in the happy range, but as it gets lower, it’s hard to tell which degree of colour it is. Is it in the dangerous range? No it’s kinda mottled 4-tablet colour and also got a bit of no-tablet colour. Do I take some anyway? And has it got the pinky hue of the transfusion-needed colour? Or is it ok and still sitting at a pH of 6 so take 4-tablets and hope that it goes up. GEEEEEEEE! JUST MAKE SURE IT DOESN’T DIP BELOW THE COLOUR THAT MEANS 6!!!
Also it’s often one colour when you’re dipping it, but when you take it out it goes further to the dangerous end of the scale. Does that mean it’s more correct when it’s been in contact in air? Or when it’s still in? Then you yell to Charlie to ask him if he thinks your wee pH colour looks ok. All of this self-diagnosing stuff is tricky! But we’ll get there.
How do I feel? Moments of nausea (but not as bad as last time). Absolutely exhausted and my brain is foggy. My sleep is pretty disrupted because even when I get to sleep I’m then awake again in a few hours needing to take more pills or go to the bathroom. Also taking steroids again doesn’t help me sleep.
But. No pain in my PICC line, just a strange fluttery/rumbly feeling sometimes. So that is a relief! This one is a risk to your kidneys, which… you know… is bad. But not to your heart. So it’s a bit less scary. Also this time the chemo isn’t constant for the whole time, just the water. So that’s much nicer.
They’ve booked me in until Monday, but have said I will probably be out by tomorrow (Friday). So it’s just a matter of waiting and seeing. I suppose as I progress through the cycles it might take my little kidneys longer to get it all out. But the results of my blood tests from yesterday were perfect. So if tomorrow’s are ok then it should be home time!!
Then I’m home for the weekend, and back on Monday for Methotrexate again. And the following week it’s all back to Cisplatin/Doxorubicin (groan) and then two weeks of recovery. But most importantly, at the end of next week, I will have FINISHED ONE WHOLE CYCLE!!!!!!!!!!!
And that’s something to shout about!
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Making progress Jen, though it sounds awful complicated. Checking this and that that and recording it all. But , next week the first cycle finishes. Well done you.
Love as always.
It is terribly complicated!!! But by monitoring it myself it means that I can go back to the hotel for most of the time and only spend half an hour a day in the ward! So that’s amazing. And of course they’re all on call as soon as I need them. It works pretty well but it does take a lot of effort on my part!!!
Can’t wait until the first cycle ends, then I’ll know what to expect more or less for the others!! I’m going good 😊 xxx
Cripes I’m confused just reading all that. With the amount of ‘blonde moments’ I have I would never remember all that. We even have to have a chart to remember to give our dogs a few tabs!!! Sending positive thoughts and squeezes xxxx
Haha I know!!! So many things to keep on top of!!! It’s definitely overwhelming at times. But I suppose I have time to devote to it at the moment! Plus there’s Charlie to keep me on track!!! Just wait until you read my story of delirium for my midnight tablet the night after the methotrexate. I’ll write about it soon. Charlie had to get me back on track!!! Thanks for the thoughts and squeezes!! xx
You’re doing so well so complicated so glad it was better this time xxxxxx
Very complicated!!! But nice that there’s a bit of respite this week compared with the other drugs!! xxx
I bet you wish you went to medical school at the moment. Sounds like your doing wonderfully. Awesome
I almost feel like I have at times! I’m getting to the point of reminding the nurses what needs to happen (though of course they know much more than I do!)