Thanks for the advise, it’s interesting how it differs so much across the health authorities.
I had to go in today to have my bloods checked (due to mouth ulcer) and asked the question about PICC lines whilst there. They don’t use the PICC but another type (annoyingly can’t remember the name. The nurse said they only give it to people with poor veins.
Mmm, when i go in to see onc for FEC2 on monday i will ask what constitues ‘poor veins’ and if they think i have them. If not now do they wait until I’ve got them before doing something to avoid them?
I have a notepad that i fill with questions when away from the hospital. I also check the abbreviations that appear on letters. Be warned though: my ‘status’ is 0 - on some scales this means dead! which i’m not, unless someone’s forgotten to tell me that!
You’re right about the chemo nurses Sophie. They actually smile when they see the picc. The one I had wasn’t very smiley afterwards, in fact my OH said she made him feel miserable. The others were foreign and two were speaking to each other in their own language. I’m just being negative today. Keep feeling lumps and bumps thinking what if…
To be truthful I couldn’t cope with any more bad news just yet so better keep on with the job in hand. Hope everyone is having a good day xx
Although I said that I had only had mild queasiness with FEC1, the Onc has changed the dose and timing of one of the steroids. That’s assuming the blood tests are OK, since they weren’t ready by the time I left. She wasn’t worried by the red face I reported, since there was no swelling with it, but I might mention it to the chemo nurses as well. She was pleased to hear about the PICC line.
Amazing! I was actually out of the building in about an hour, and that included a short chat with someone I know who was going through as a lay chaplain.
Hope you feel better soon, Den, I hope it’s just tiredness, but check your temperature if you feel ill.
Have not been on line much lately due to feeling pretty rotten.
Had first FEC on the 14th- breezed through and was really good until Monday afternoon (day 4) then crashed.
Felt “ill” is the only way to describe it,no nausea or vomiting though no sore mouth or anything just the bad taste. Have been drinking gallons of fizzy water etc. and I was suffering from anorexia (in the true medical sense)and tired +++
That lasted until the following Monday- ie yesterday. I had to force myself to eat and that is SO unlike me, I have masses of weight to lose and I have lost 3 kg without even trying. Must have given me the “skinny chemo” Sophie.
Today I almost feel normal again. I went to the hospital to pick up my wig then on to the hairdresser to have it trimmed. The general consensus, hospital hairdresser, my own hairdresser, my daughter, my neighbour and myself is that the lighter colour suits me better than my own (out of a bottle) hair colour. I chose the lighter colour so I wouldn’t get such a shock when my own hair grows back grey. If good can come out of BC that’s one of them for me- I’d never have known if I hadn’t had a wig. My scalp has felt pretty strange so I’m thinking it wont be long before I start finding hair on the pillow. I’ve already been treated to a free Brazilian though!
Cheryl –good luck with FEC 2 tomorrow
Good luck Jan and Deb with FEC 2 on Thursday and Sophie and Maria with your FEC’s 3 & 2 on Friday
Den42 I hope you start to feel better soon. You have my greatest admiration I don’t know how you cope with two little ones as well ((((((xxx)))))
Hope Everyone has a good rest of the week and week end.
Diana x
Thank you Diana. What a good memory you have. Cant believe its number two already. Have been feeling so well so am gutted that im going to feel rough again from thurs. So sorry you have felt so ill. It really isnt nice is it. Hope you feel better from now.
Re lines etc was talking to eldest son who has a colleague at work who’s wife has bc, wife was given a port as she has small children so risk of accidental damage higher. Glad they seem to be assessing the whole person, lifestyle etc to do the best for their patients.
Diana - exactly the same happened to me after FEC1 - I was ok for first three days, just a little woolly headed, but crashed on day 4 and was literally sofa bound for a good three days. I talked to my onc about this, and she was suspicious that it was a crash after coming off the steroids. Apparently some of us have ‘lazy’ systems that quickly allow steroids to take over the energy supply, so when we stop taking them after three days, our bodies decide they can’t cope without and just go into melt down.
After second FEC, I had the same amount of steroids, but tapered off over four days instead of three, and it made a massive difference - no woolly headedness, no ridiculous fatigue… so hopefully that was down to the change in steroid regime.
Definitely talk to your oncologist about it - see what can be done, and hopefully the next round won’t be so bad.
Thanks ladies for your sympathy- I am definitely feeling better as I’ve now just eaten almost a whole block of dark chocolate with ginger. That 3 kilos will be right back on very soon. Sophie I don’t think it’s the steroids as I’ve taken them in short bursts over the last 13 years when I have rheumatoid arthritis flareups. The “ill” feeling I had was quite different- it felt like I’d been poisoned! I can’t really complain too much, other than that seven days I haven’t suffered but I will let them know.
I envy you girls who have blood tests the day before, I’m going to see if I can do that. At the Marsden in London I had the blood test on the same day then had to sit and wait until the results came back before heading for “the chair”. Actually they told me I could leave and they would ring me when the results were back but I just stayed put and read.
A question - how many chairs in your chemo rooms? I was surprised to see so many where I go- over thirty- nearly all full.
Diana x
I didn’t actually count the number of chairs when I was there before, and now it’s been moved, but I’ll try to get an idea on Friday. I need to find out where to turn up for the PICC line tomorrow; I hope they’ll send me a text reminder with the location.
It’s a pity my centre isn’t a bit nearer to the closest shops. Because of massive construction there aren’t many places to stroll around, either.
My chemo ward (‘my’, lol) is not so large - six chairs and four beds. I had to lounge on a bed for my first one (presumably in case I freaked out and they had to sit on me to keep me there), and on the second all the chairs were full as they were catching up after Christmas, so it was on the bed again. Now, which shall I choose on Friday?!! I thought my ward was busy with nine people in it - but 30?!! Blimey.
hi
MY chemo suite has 15 in the main room and then another 6 in the annexe. No beds for us though! It’s always busy, although yesterday it didn’t seem that bad, was in and out in 4 hours which is as qucik as I can possibly do taking into account infusions and pre meds.
x sarah
Just a though Diana, I have bloods done day before and I go to local chemist too. I just check that they take bloods in the morning to the hospital, have test at 9.30 ish and then the first ferry is at 10. Quicker than hospital. My average wait at the chemist is 10 mins! (I am on weekly chemo so its one less trip across the city!)
x sarah
Hi all. Tomorrow for FEC 2 I have 4 steroids to take half hour before treatment and one antisickness to take 1 hour before, Is this normal practice? What if we have to wait for the chemo! I suppose the half hour and hour are minimum times to take them. I would ring up but every time I do I can’t get through. It was 20 mins to get through last time. The Churchill Oxford Chemo Suite has 3 bays and I would say at least 10 beds in each bay. It feels quite manic, but I suppose last time was post New Year bank holidays etc. I thought how ill some people looked. I will be one of those yellow faced persons tomorrow. I’ll wear a yellow T shirt to match.
I think I’m going neurotic–I got a letter today giving me an appointment for a heart test, and all I could think was ‘What’s wrong now?’ even though the heart test was mentioned before chemo started and I actually expected to have it before FEC1. It took a few minutes before I remembered that, though.
Janipi…if it’s one hour before then maybe you get Emend as that’s the timescale and a delay on that or dex is no big deal. You’ll know if it’s Emend as you’ll get the packet with a smaller one for each of the following two days at the same time as the first. With the occasional person it doesn’t appear to work…but my home chemo nurse says they need it up to three hours before). Other than that it’s the gold treatment and with that and ondansetron with the dex and another six hours later have had no nausea or vomiting with three FEC (fourth was yesterday and fine so far. Indigestion is another matter…lol.
And I like my settee beside the fish tank. FEC3 my children were on holiday so once things were past the scary red and my arm snug in its heat pad and throw (and the freezer on my head) they could come and go for a chat (reducing the fear of the unknown for them).
Thanks everyone! Hope everyone gets on ok today and tomorrow. Cheryl I hope you find the chemo unit! lol. I’m feeling queasy already and have been awake most of the night. I’m such a baby. Heigh ho here we go!x