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.

Wednesday, September 03, 2008

Tiddely pom, the more it grows.....

Ba-blah blah blah.
It's 'bye bye' to Xeloda from me and 'hello' to Arimidex as bad, naughty Xeloda has declared itself finished and allowed a wee bit of growth to the nodes in the lungs and lymph. Tut tut tut. But! Bone scan showed *mostly* stable/no big change. However an MRI has been ordered to check if the pain my shoulder is due to the cancer in my spine around my neck and/or the cancer in the bone at my sternum. I didn't really realise that there was cancer in those specific places before today; never wanted to know - but I guess one has to know eventually. If it proves to be this, then there may be some radiotherapy to help it.

So, yeah, not a good day. Could be worse - the growths are small and slow; no rampaging for the moment. And I can't say I'm sad to see the back of the Xeloda - 12 pills a day carefully arranged after eating at the right time and causing the diarrhoea and sore hands/feet - I'm happy to see the back of that. And the Arimidex is fairly side-effect free: hot-flushes (got them already) and aches in hands.... but it's all still a blow. I needed the Xeloda to work for longer than this. I was hoping for more than a year on it. I don't understand how the Arimidex is really going to help - all it does is to inhibit any other oestrogen production in the body - so, yes, it's going to prevent the oestrogen feeding the cancer cells; but, surely if staying in control of the cancer was as straightforward as this, wouldn't this drug have been the one we tried first? It's not exactly sounding like we're using the big guns here. But the only other options is moving onto the old-school chemos (IV) The Arimidex at least means that I only have to go into see the consultant every 6 weeks, instead of every 3 weeks - that's nice. And swallowing a tablet a day is infinitely better than being hooked up to IVs again - although we'll be there in the end.
So, teary day. The thought I can't stand is of having to go through this *every time* a particular line of treatment comes to an end - that's what I can't stand. The shock, the upset - although today was *not* helped by a very large clinic list and having to wait over an hour and a half beyond my appointment time to see the consultant. There weren't enough seats in the waiting room. I was a complete mess before I even got in there. Needless to say - I wasn't totally surprised by the results - I was worried; but no matter what, hearing it is never easy.

I really hate cancer and I really hate having cancer and today I really wished for oblivion. Just for a short time - to not have to feel or think for a while; because I hurt. I am bored of cancer; I'm bored of having it, I'm bored of fighting it - it's tedious and monotonous and *dull*, *dull*, *dull*. I don't want to fight it anymore - I'm tired of it. Just think what I could use that energy for if it wasn't being sucked up by getting up and facing the cancer every day....


Anyway, that's where I am today.