Because Pipocas was occupied with family obligations today, nursemyra & daisy very generously offered to go with me to my first chemo session, scheduled for 12 pm today. The one my oncologist told me would last for about an hour or so. I was supposed to arrive 15 minutes early for the appointment but got there even earlier, at 11.30.
Well, ha! I finally got put into the comfy chair around 2pm and was told the procedure would take about two and a half hours (wtf???) … but what could I do? I mostly felt bad for the chicas spending most of one of their holiday days in the hospital with me. And the procedure itself was no picnic as my hand and arm hurt like hell almost the whole time, and still does now some six hours later.
What I am mostly worried about now is how I’m going to react to the chemo and also the pills I have to take for the next two weeks, as these are apparently the ones that cause all the problems with nausea and vomiting. To wit, nursemyra is staying over tonight, mostly so I don’t have to go to sleep feeling afraid and alone – isn’t that lovely? I don’t know what’s going to happen, so until I start having symptoms that I can find a way of coping with it’s like being back in limbo once again.
Anyhow, just back from a lovely evening of tapas & wine with the chicas (tastebuds are already going wonky). And I’ve just finished chatting to Nog on the phone – he’s settling into his new job but really wishes he could be here. And now it’s time for bed. I honestly have no idea what tomorrow will bring but it feels safe knowing there’s someone just down the hall if I need anything. Even just knowing someone is there will probably be enough.
Going to try and be not so wimpy & needy tomorrow.
Hasta mañana . . .
casa azahar 
Hang in there, az!
So glad you don’t have to be making these first steps on your own. Big hello to our good nurse.
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One day at a time, eh … and the first one’s behind you now. Glad you’re not alone. x
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I am so glad you have good support around you right now. I can’t imagine how terrified I’d be if I were the one going through this. Do you have family in Canada that can come and be with you for a while?
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so pleased you have NM & DF there with you. I know you must be going through hell just now.
Still sending the positive vibes from over here and will carry on doing so.
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Hey, One day at a time is for all of us. {{{{Hugs}}}}
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You’re not being wimpy at all! I’m really glad there is someone there and I bet Nog feels dreadful that he’s away for all this.
Hope the day is going well and that the symptoms are mild for you honey xx
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As Archie said, Az, one day at a time.
So glad nursemyra is there for you. Big hugs to you both.
xoxo
Mark
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Hmmm, let me think … nope, have no idea what inspired you, FFE. 😉 That was fabulous – thanks!
“Hang in there, az!”
Okey dokey. And you stop stealing my scrabble spots, ian!
I’m very glad I’m not alone too, bob.
I think the fear is the worst thing, WC. Makes me get all weepy and say and do stupid things. The chemo nurse told me yesterday (in a very kind and teasing way) that it was okay for me to cry the first time but after that I wasn’t allowed, and that made me smile through my tears.
70steen, we have to talk about August – maybe send me an email?
Are you carping the diem, Archie? You’d better be.
I have to take the dreaded pills soon, truce. Supposed to take them with food so I’m waiting till I have brekky. Then I have to go to the hospital for a check-up on my belly surgery. The fun never stops …
Thanks toby. All hugs gratefully accepted. 🙂
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Hope the arm and hand are feeling better this morning.
:hug:
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You are allowed to wimp – and to need come to that!
You are also required to do whatever it takes to get you through this.
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You’ve probably already been given lots of stuff about mouth care during chemo … but this is a useful link.
http://www.cancerbackup.org.uk/Resourcessupport/Symptomssideeffects/Mouthcare/Chemotherapy#7211
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From Teuchter’s helpful link : ‘Avoid neat spirits, tobacco, hot spices, garlic, onion, vinegar and salty food. These may irritate your mouth’
Oh dear, oh dear. I see trouble ahead…..
Seriously though, don’t worry too much. Get the docs to give you an antibacterial mouthwash. Or an over the counter version like Corsodyl (if you get it over there) will do just as well.
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Bah. Forgot chevrons don’t work on here. I wanted to :snigger:.
:cross face:
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Well, Pipocas and I had a great time at the hospital this morning. Had people in the waiting room staring at us because we were laughing so much. My appointment was for (I kid you not) 9.48 and we got out of there around 11.30. Then went for a late 2nd brekky. 🙂
“You are also required to do whatever it takes to get you through this.”
That is sooooo tempting, Johnny!
Nobody told me anything about mouth care, Teuchter – thanks for the link.
Not too much trouble ahead, Sara, since I quit smoking in April, don’t drink neat spirits (just vino) and I no longer sprinkle crushed chilis on everything. I think I’ll give that mouthwash a go. My arm and hand is still really sore – is this normal?
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Keep your head up girl, i know you’ve probably heard this before but the better your attitude the better off you’ll be, and i’m keeping my fingers crossed that you’ll be fine, besides you have some good friends there to keep you company for awhile and that in and of itself is priceless, now to the important stuff, if the chemo makes you sick do not hesitate to procure some mary jane, i’ve known a couple of people in the same situation and it was the only thing that helped them to eat and feel somewhat better, screw the stigma and get it, hell even here in the good ole USA they’ll prescribe it now and then, the Marinol pills don’t work, i know, i’ve tried them for shits and giggles… and if you need a good smile you can check out the lounge, Nursie knows where it’s at and say high to the boy who turned 2 today, i know it helps me. take care.
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What else is temptation there for, if not to be given in to occasionally?
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Well, it’s certainly not an abnormal reaction, although mine only really hurt while it was going in. Try whacking a damp flannel in the microwave for a bit and putting it on the worst bit. I think it’s your veins complaining. Either that or they didn’t cannulate you very well and it’s gone into the surrounding tissue – not serious, but painful. If it’s no better tomorrow, ring them up and tell ’em.
What drugs are you getting, btw?
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Corsodyl mouthwash is effective – but can cause staining of the teeth. You can minimise this by avoiding tea/coffee/red wine/etc for a couple of hours after using it.
Also – a good two minute workout with your toothbrush can deal with stain – if your mouth can take it.
If you can’t get Corsodyl as such – ask for it by its generic name, chlorhexidine gluconate mouthwash.
:morehugs:
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“What drugs are you getting, btw?”
– The injected chemo drug is Xelox with oxiliplatino.
– The cell-killing chemo pills are Capecitabina.
– For nausea and vomiting: Ondansetron the first three days, Primperan after that.
– Tramadol for mouth sores
There are a few more on my list but Dr A suggested I wait and see if any of those side effects turn up before getting them.
I called Oncology about my sore arm and they told me to go to my GP, so I’m off to see Dr A now.
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TRAMADOL for mouth sores? wow. You must have the constitution of a concrete rhino. I took them for the bad nerve and joint pains I was getting in my legs – caused by a drug called paclitaxel – coupla those, and it was bye bye reality time. I’m guessing the oxiliplatino is what’s called oxaloplatin. Not one of the ones I had.
‘Nuvver tip – (stop me if you’re getting sick of them) – if you haven’t already, buy a thermometer and take your temperature daily so you get used to what is normal for you. A slight temp. is normally the first sign of infection, so you’ll be able to nip it in the bud. Even if it is by the method you saw me use involving 3am drinking sessions and copious amounts of rioja 🙂
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Ask the nurse to try a PEDIATRIC needle; they are smaller and both my sister and mother found them to work well, with little bruising.
Can you listen to your I-Pod while having infusions, or waiting for your turn with the Dr/Nurse? Positive vibrations, yeah!(Today is International Reggae Day).
One Love, One Heart, Let’s Get together, You’re Going to be ALLRIGHT!
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Hola cariño,
I hope you keep that sense of humour.
I’m impressed by your stoicism.
Good Vibrations, I second that. A lot of good people loves you.
Un abrazo
María
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Hey there.
I’ve been lurking out here for a while, getting some of the news from Mme. I just wanted to offer my thoughts and support as you start off.
One down. Hang in there.
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Yeah, one down — what Metro said!
I find reminding myself that “this too shall pass” is the honest truth…so keep laughing in the waiting room, and ask for the smaller gauge needles next time.
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Keep the tips coming, Sara – much appreciated.
That’s a good idea, jahlioness – I’ll ask them for a kiddie needle next time. Four days later and my hand is barely usable and still really hurts.
Gracias, Mar. Estoy intentando sonreir de vez en cuando.
Thanks, Metro (and Lori). Yeah, one down. Just not sure if there are six or eight left to go. It’s going to be harder going there the second time, I think.
I’m thinking of getting one of those mini dvd players for the chemo sessions, SC. It doesn’t seem fair to ask people to wait with me for so long.
These past two days have been pretty awful. I can barely get out of bed and I’m feeling quite nauseous. Haven’t been able to eat much.
Some people have called and asked if I need anything but I’m just no good at asking for stuff. Especially when what I really need is just someone who really wants to be with me and help me feel less afraid. And so I’ve spent the last two days alone. It seems that being scared and needy tends to put people off. And that it’s easy for people to say “I’ll be there for you” as long as you don’t make them feel uncomfortable and actually require them to “be there”. Ah well, you did warn me, Sara . . .
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Not nice to be proved right though 😦 .
If the nausea is that bad then demand better drugs. There is NO need to put up with that shit. There are thousands of anti-sickness meds out there. Trial and error will find which one works best for you, I went through at least two before I found the right one.
On a brighter note, the second round might be easier. At least, it was on me. It seemed my body went ‘what the FUCK?!’ the first time, then second it went. ‘oh, right. This crap again’. At least you know now how you’re going to react, and coping strategies can be developed. It always took me a week to get over a dose. It’s hit you about the right time after, too. You won’t always feel like this, promise.
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Do whatever you need to do, Az. Sara’s advice re: anti-nausea meds sounds best. Hang in there. We are all pulling for you!
xoxo
Mark
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Oh, azahar! I have been reading this series of posts and I am so sorry that you are going through such a horrible time right now. I have you in my thoughts quite often, even when I am out in the garden working or doing massage I often hold the thought of you in another place in my mind. I have no personal experience of this illness (and hope to never have it!) although I have listened to many stories from clients and friends who have gone or are going through it. From what I can gather, it is definitely a lesson in living in the moment, getting through each hour and each day and celebrating that survival. I wish I had the money to go to Seville and stay with you. I would if I could. But even if I was there to hold your hand and change the sweaty sheets and provide bland nourishing broths, or if anyone was there, the actual physical experience of this illness and the incredible sickness caused by the treatment is one that you travel alone. I don’t suppose that there is any other experience in life that shows us our essential individuality more clearly than sickness and pain.
for what it is worth, I am thinking of you and sending you support many moments each day. I hope that somehow you can receive the support and caring I am “sending” your way.
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“I don’t suppose that there is any other experience in life that shows us our essential individuality more clearly than sickness and pain.”
Well, you’re certainly right about this being a journey that one travels alone, hmh.
It’s been a week since I got the prognosis. And that same day Nog (best friend and main support person in my life) left to work in Almeria for a month. I have honestly never felt so scared and alone as I did last weekend.
I can’t wait for Nog to come home…
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Ondansetran is the shizznit. It’s amazing stuff: I didn’t barf once during eight months of chemo, thanks to that (plus a little supplementary stematil a couple of times).
If your veins are reacting this strongly this early, one thing you might want to consider is a Groshong catheter. Not as bad as it sounds: it’s a line that they implant in your chest to deliver the chemo drugs to a large area outside the heart, so they are more diluted than they are just going into a basic vein. Thus, they’re not as caustic. In retrospect, I’d have gotten one put in immediately, rather than wait the months that I did. But if your chemo is more targeted than mine was and shorter in duration, it makes sense not to bother.
Sounds like you’re coping well. That doesn’t mean keeping a stiff upper lip; that means dealing with what you’ve got day by day and aknowledging that emotion is a large and valid part of who you are. Also sounds like you’ve got a great team, both professional and amateur.
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I was given Ondansetron at the hospital – enough for the first three days. After that they told me to use Primperan if I still felt nauseous. I don’t know if the nausea would have been worse without it (probably) but I also didn’t vomit (well, so far).
My hand is still quite sore so they are going to have to do something different next time. Maybe not a port or catheter yet since I’m just supposed to have one more chemo session before the liver surgery. But it sounds like a good idea for after the op.
I’ve been learning the hard way that it’s very important to know who I can let down my guard with, especially with showing fear and other ‘unpretty’ emotions that might make people uncomfortable. I think I’ve got it figured out now.
How long did your chemo last, Rain?
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My chemo was eight months, biweekly, so you could say I have a LOT of experience at being a chemo patient. But in retrospect, if I were looking at even two or three months of chemo I’d go for the catheter. I have two permanent scars, each about a half-inch long, but once it was in getting the chemo was itself effortless. No pain whatsoever, no poking around for a vein, nothing.
Eventually your body comes to react to your thoughts of chemo and if you PREVENT the barfing from happening in the first place, ie not get into a cycle of barf, it does not associate chemo with barfing, so you’re less likely to barf, all other things being equal. Does that make sense? Anyone who’s seen a gross movie knows that the mind can effect the stomach.
So they told me to take an ondansetran a few hours before chemo, to effectively prevent the feelings of nausea in the first place. I shamelessly ate the stuff like candy and the nurses were surprised at how little the nausea effected me; then again, maybe it’s just a quirk of my constitution.
FYI as chemo goes on your skin will get drier and tougher AND thinnner, so stock up on richer lotions than you are used to and stay completely away from anything with AHAs, fruit acids, peels, peel-off masks, etc. This side effect will totally go away about three weeks after you stop chemo, fortunately. I was so relieved to see my first pimple afterwards!
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Wow, that’s a lot, Rain. Biweekly as in every two weeks or twice a week?
I was originally told I’d need 8 sessions every three weeks, which would be approximately 6 months. But now that I need the liver surgery I don’t know if the 2 sessions I’m doing now will count against the original 8 or if they’ll start over again after the op. In any case, I’m going to ask about the catheter/port option. I still can’t use my bloody hand properly after almost a week and it’s still quite painful.
Thanks for the skin tip. I recently bought some Nivea body lotion that says it improves skin elasticity (in order to avoid looking like a shar pei) so I’ll keep slathering that on.
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“These past two days have been pretty awful. I can barely get out of bed and I’m feeling quite nauseous. Haven’t been able to eat much.”
Az, I think thatabout’d be the worst symptom, for someone like me, who virtually never feels nauseous! I know you said you didn’t like the feeling you got from mary jane, but you might consider trying a little to see if it will help with the lack of appetite. Mary, my co-worker from way back, got *very* nauseous — her son got her some mj and it did the trick for her. Lack of appettite is an enemy now, since fighting off the chemo and the reason you’re taking it will sap your strength. Don’t know the legalities there, but in CA, it’s (theoretically) legal to dispense to patients for pain and chemotherapy effects. HUGS, many as you need!
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Biweekly as in every two weeks. And if yours is the same as mine (I didn’t have surgery but I did start chemo even before my CAT scan) it will count against that eight, so you’ll have six to go. It IS mutable upwards, ie they might decide to do a couple extra. It is not mutable downwards, alas.
spacecadette has a good idea. If you can’t stand smoking pot (I could NOT tolerate the smell at all, still can’t) you can always put it into foods. You must know about brownies. There are tons of recipes, and it’s very effective and milder in side effects when taken that way.
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Coincidentally, I am presently watching the third series of Weeds. But I think that’s as close as I’ll get to the stuff. The nausea calmed down by Saturday and – so far – hasn’t returned. I think next time I’ll take a page out of your book, Rain, and take some ondansetran before the session starts.
The reason I wondered if I’d have to start over with 8 sessions is that after the surgery I’ll probably have about a month without chemo while I recovery from that. They still haven’t told me when the surgery is going to be so I don’t know if I’m going to have one or two chemo sessions before.
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Sounds like they might add one session on at the end. That’s just a total non-professional estimate, though it comes from a relatively educated place. Not only did I go through chemo, but I read all my medical charts and my mother was in medical records for twenty years, so I know how to interpret doctors’ stony silences, etc.
I believe an ondansetran tablet at the strength I had (which, alas, I cannot remember) was good for eight hours. So they advised me to take one four hours prior and four hours after and eight hours after that. Then as needed. You should Google your dosage: there are a remarkable variety of quality cancer forums and infosites on the web. I even met a very nice woman who’s doing an isolated, WP-MU style gated community for breast cancer patients.
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“not get into a cycle of barf, it does not associate chemo with barfing, so you’re less likely to barf”
I read somewhere that you can sort of transfer the “cause” of your nausea to something you hate eating. In other words, while on the Chemo, eat something you normally hate eating — not something that actually makes you sick, of course but something you sort of turns you off. In that way, you can blame it for your feeling queasy and the Chemo doesn’t get blamed in your mind…
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