Sunday, September 28, 2008

Preparing for chemo advice

To Cathy:

Thanks for your email - I hope you get this is time to be of some help. You didn't leave me an email address so I'll do my best here on the blog for you.....

First chemo:
"What can I do for him/her that day? What should I be prepared for?"

This is a good question - this is a *great* question. It's also a tricky question.
We're all different, we all react differently, different chemo suites have different procedures and atmospheres and different chemo drugs affect our bodies in different ways.
Wow. That was *really* unhelpful, wasn't it?
Let me try and be a bit more helpful within the proviso that I can only speak from my own experience.
My first chemo was terrible - I'll make no bones about it - sorry. It was terrible because everything was so unfamiliar. The space, the people, the procedures. I also had my own mental baggage - namely that I was hugely uncomfortable and sickened by the idea of having needles stuck in me and having these foreign substances put in me. I found that really quite frightening.
What was helpful for me?
- Having my family with me - I had my mum, dad and partner with me that day. We couldn't all fit in the chemosuite at once so they took it in turns to be with me.
- Solidarity - I don't like people telling me everything is going to be ok. What I do like is people saying things like "Come on, we're going to get through this" A sense of togetherness (although sometimes I do think "who's the 'we' in this?!")
- Be the best companion you can be. I've always found my dad really great at this - he'll make sure we've got the sudoku and crossword puzzle pages from the paper and he'll be daft and distracting when they're putting in my canula. You don't have to do these specific things - be the things you can be - talk about something you know the other person will have an opinion on or is interested in.

What to be prepared for?
- Sometimes fear manifests itself in funny ways, especially when we're in situations where we don't want to show we're scared. So getting angry or really quiet or fussing about something inconsequential or anything that seems out of character could be that.
- Waiting, sitting around. Chemo takes time.
They should begin by talking to the patient and carer/family about what the drugs are, how they'll be administered, what monitoring they'll be doing and what side effects might result - and how to manage those if they occur. Hopefully you should have one nurse looking after you that day - make sure you know their name. No-one does *anything* to me until I know their name - it's only polite!
Then, assuming we're talking about IV chemo, they'll want to put in the canula - the key that's always made me feel better when it comes to canulation is to remember: they can't do it until *you* roll up your sleeve. And you're in control of that! Don't watch them do it - there's no need - you don't get bonus points. I always like to jokingly ask them if they're really good at canulation. That makes it clear that I expect someone who knows what they're doing. You'll probably get to a point after a few visits of knowing who you want to canulate you. Who you feel comfortable with and who knows what they're doing. It's your treatment - don't feel you can't ask for the person you want.
Once they get the canula in they may hook you up to some saline solution and/or some antisickness medications - in my experience it can take around 20mins for that to go through. Blah blah - may be different for you, etc.
Chemo can be administered in a few different ways - I've had chemo drugs injected into the saline line going into the canula (this was an alarmingly *red* coloured drug to boot) - this is quite quick - 10mins or so, I've also had it dripping into the saline line going to the canula - this is sloooowwww - an hour or more.
Once the chemo has gone through they may well administer some more antisickness medications and then give you some antisickness tablets to take home with you. Make them write down clearly what and when to take the various ones plus clarify if you can combine them. I often thought I would remember what they told me but then didn't.
Then, they should let you go home - but also make sure they tell you whom to contact if you're unwell or worried or have questions or are running a fever.
- Feeling out of control. People doing things to you that you don't really understand can make you feel really out of control. I've posted before about being in control of as many aspects as possible.
- Being tired. Both of you. Sitting there, with that much tension for that amount of time is *tiring*. You might want to prepare something for dinner that evening in advance - or if you have some helpful friends or neighbours who keep asking what they can do then ask them if they'd mind preparing something ahead of time. I'd advise something light and easily digestable. I never felt like eating when I got back but I would try and eat something if it was put in front of me. Plus, I'm sorry to say - something that's not too terrible to throw up again if it's a chemo drug with sickness as a side effect.
- Feeling, odd, strange. I got through the day ok, but once I got home I just felt - invaded, scared, lost, all this and more.

I hope this is a little helpful to you - good luck to you both.

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