Hi Mandy - here’s a reply!
If only the hangover was the result of something more fun…
Are you having 6 x FEC-T? I have survived this earlier this year. If so, you are almost halfway through the FEC. I like to break down everything into small bits and tick them off.
Keep on keeping on, Cress, xxx
Good morning crackers,
Had PICC put in then CT then Picc taken out yesterday.Seems the PICC is bad to keep in for me due to missing lymph nodes in both arms. Next CT they are hoping to have arranged a poratcath if not its back to PICC in/ out, I’m thinking of taking out a very LARGE bet with my family that it will be a PICC again,cause of holidays in next 2 weeks. Cybele was right the PICC is painless compared to other procedures so if it’s a PICC again I won’t mind. Drank about Lt water then slept for 12 hours last night am feeling fine,slightly muzzy head could be too much sleep or the CT.
Can I adopt Cher Marie? 'tis so cute and a lovely colour.
Reading everyone’s comments makes me laugh and gives me courage, thank you all for being super people xx
Morning, all
On, what is it, Day 9, I am happy to report that I am feeling considerably more human again, with the help of the NASA space anti-emetics, and the delightfully sleep-inducing Lorazepam.
It’s SUCH a relief, I was really losing it by Monday after 7 days non-stop nausea. The Cyclizine has helped massively - the nausea is still there, but it’s now bearable, whereas before it wasn’t. I think I may be stuck with it for the whole 18 weeks, though :((
This doesn’t come as a huge surprise, because it’s a genetic thing, my sister also massively prone to nausea, and this is one of the reasons I was SO resistant to having chemo, because I knew it would be hell for me in this aspect. Still, now they seem t o have got the mix of drugs right, and it’s bearable. I can do this. Which is just as well, because I don’t have any choice.
What was very upsetting was that I had such a hard time getting help - won’t rehearse it here, it’s all on the blog - that increases the psychological distress massively when you’re in trouble.
But because of this debacle, have now got very clear lines set up with both oncologist and GP for any urgent aid needed over next few months, should any other problem arise. ALL my antinausea drugs are now on repeat prescription at my GPs, and he has promised that I can ALWAYS speak to a doctor on the phone the same day if I need to, and that I should make it very clear to the receptionist that as a chemo patient THAT IS MY RIGHT.
Yesterday I had to go to the hospital to get my PICC line flushed, and I took a bunch a flowers and a card to say thank you to Dina, the oncologist’s secretary who was the person who finally listened to me and was kind and GOT ME SOME HELP, fast. Such a lovely woman, so kind and paitent when I was sobbing down the phone to her. A touch of human kindness makes such an enormous difference when you’re going through what we’re going through - someone who steps outside the exact responsibilities of their job, and responds to you as another human being in distress. There are a lot of people who DON’T do that.
Haven’t caught up yet with what’s been happening to the rest of you - hope all is well, and the best of luck to anyone who’s having their first dose this week.
ps my hair is still all there, but I have one weird new side effect - my sense of smell has been magnified by about 300 x. I feel as if I’m turning into a dog. Cooking smells within 200 yards are a nightmare,
I sniffed at R’s glass of red wine last night (I am off the booze until after chemo) and, although it was in fact a very nice Cote du Rhone, it just smelt to me like red vinegar. It’s really weird.
Thanks Cress - you star!!!
And yes I am nearly half way through FEC!
xxxx
Sheila - I did not know that putting a PICC line in, then putting a PICC line out, then shaking it all about was an option. Might ask for that if my poor viens pack in again.
Right - off to hosp to get bloods done for tomorrow’s piosoning. Taking Virtual Howard Hughs (VHH) with me as terrified of norovirus. Have to be at hosp every day for next 3 days - just need to hold my breath and not touch anything…
xxx
Good luck, Cress xxxx
{edit} forgot to say, having a PICC line is wonderful. I don’t even notice it;sthere, except when I undress. Totally painless, and saved you getting your veins fried by the chemo. I don’t know why they don;t give them to everyone, as it makes things quicker for the nurses, too. All they do is plug it in.
Lots of poeple seem to get PICC lines only after they’vehad a lot of trouble and pain and soreness twith their veins - why bother going through all that?
Maybe there’s a cost or medical reason they don’t do it for everyone, but I’m really surprised they don’t give them to more people at the beginning.
I got a blood clot in mine so it had to come out. Then I got a Hickman line, but it was in the way when they did my mastectomy so it had to come out. The GemCarbo is not as harsh on viens as FEC-T so I am giving it a go au naturale. I was worried what would happen next so I am interested in the idea of putting it in just for one treatment and then taking it out again if I have more trouble. Amazing what they can do.
More importantly, do you have Marmite?
Oh Yes.
Why didn’t I think of the Hokey Cokey Cress…the shaking about might have made the CT go through a bit quicker…
Hello everyone,
well tomorrow my first day and it seems they are doimg it all echocardiogram, PICCline and chemo nice full day!
Maire poor Cher to be treated in such a a manner.
Supachick, good luck to your friend she is lucky to have you .
Glen welcome and I too am a relatively new member And feel I have already made some amazing friends.My first lot tomorrow so lets listen to our other friends and amazing ladies and hope that fear and anticipation of the unknown is making it all so much worse.
Cress lets hear it for movicol not sure what it is but I want it!!! We are all very proud of not just your but your bowels.
Mandy, we are all here for you everyone at different stages of their journey . We can do this all,together. We can be honest here, cry and yes even laugh . Cress’s bowels laugh of the day. I too found the site a little tricky to start and sobbed because I thoigh that nobody liked me, yes you fuessed I a little paranoid to say the least At the moment. How wrong I was everyone here for each other and it’s truly wonderful and what is a very hard time in our lives. Lots of hugs to you.
Cybele welcome back to feeling more human I am so pleased you are feeelimg a little better.
love to you all and thinking of you all. Looks like I am going to be there most of the day so will take diazepam with me and food and drink, in that order. Really need it all to go as smoothly as it possibly can. Don’t think I can bear another delay as much as I don’t want to do it.
Cathie xx
Cathie,
just in case I don’t get time to post again before you go, this is just to wish you LOTS OF LUCK tomorrow, and that it will all go smoothly, and you will return home a fully-fledged member of the December Chemo Club!
When I went for my first one last week I was SO terrified, but the ward was nice and calm, the chair very comfy, and the nurses lovley, and very patient with all my fears. The actual process didn’t hurt at all - the only thing that did was the Cold Cap, but I didn’t find it too bad.
Can’t remember if you’re having FEC, but if you, it definitely made me feel stoned (the last drug they put in, can’t remember which one), and I was high as a kite by the time we left! Which was really quite welcome at the time. The whole process was SO much less bad than I had feared.
With be thinking of you tomorrow, lots of love, Caroline xx
Good luck tomorrow Cathie, I will be thinking of you…drink loads of water…I think that was my downfall…
I have felt a lot more positive (still cried everyday!!) since starting chemo…even though it is a long journey, it is serious action to blast this awful awful disease that affects so many people totally indisriminately (wish there was spell check on here!).
Been for bloods today as surgeon hoping to put some liquid in my somewhat deflated expander bag! Do you think that it will show that I’d eaten most of a bag of sports mixtures in the car on the way?
xxxx
Cathie hope tomorrow goes ok and your day isn’t as long as ou are expecting. I think you will probably welcome getting started in a funny sort of a way it will be one step closer to your goal .
Wendy
Hi Crackers,
Welcome to the newbies. Hope I don’t put you in too much of a downer with my post, but today has been a glass 1/2 empty kind of day!
Washed my hair today-and I knew it was going to come out but what a shocker. It was really bad. I lost most of my hair in one fell swoop! It had become very matted and I struggled to tease the tangles out. I had a small sob. I have tried very hard not to feel sorry for myself but felt I was justified in grieving: grieving for my lost hair, grieving for my lost energy-sob sob sob! Eventually had to call my husband upstairs to clear out the bath. Basically I’ve gone from looking normal (hair wise) yesterday to all but bald today.
I could not face Cher-she makes me look like Coco the clown. Just too full on top. So stole my daughters grey beret and a big scarf and took my other daughter to school with frizzy wisps sticking out.
Then went to get bloods done. I waited 2 hours to see the nurse (not her fault, she was very nice, but I just feel a 2 hour wait is not on. Esp for those people who are really feeling ill). When I saw nurse I had another weepy moment when I told her about hair loss. I really hate crying in front of people. Want to keep my emotions in check, at least until I’m alone. Anyway I had had some mild chest pains which I reported and the result was they’re changing my chemo so i wont have the fec anymore but will go straight onto taxotere with one of the fec drugs (Can’t remember which one). So the good news is I’ll only get 4 doses of chemo rather than 6 but I feel I’m cheating and maybe it wasn’t my heart and I’m just neurotic and maybe my cancer cells will flourish without these two drugs (see! Glass def. half full).
So off I went home feeling all sticky eyed and down only to get a phone call telling me my white blood count was too low and I won’t get chemo till 27th Dec. Now again, I should be happy-few glasses of wine on Christmas day and all that but I just don’t understand how chemo numero uno could’ve put me in this place when I think of myself as pretty healthy, young (snigger) and have been a bit of a good girl (early nights, no bevvy, lots of smoothies etc).
Anyway, I’m sorry for the negative post, especially when lots of you have to have 1st chemo this week. On the plus side, I’ve really felt ok, health wise up to this point and would say I was coping well so I’m sure this won’t happen to anyone else at this stage of the game and I will endeavour to pull myself together-because this cracker has definitely lost her snap today.
I now have Cher on-might even be upside down-think I’ll need to get her refitted to baldy head. I have stuck a hat on top to flatten her and she looks quite fetching with a hat on top, so that may be my look from now on!
Posted on behalf of new user Maria - Jo, Facilitator
I think the Jingle Belles is very clever! Im starting Chemo on Dec 21st - my husbands birthday!!! oh well i guess cake and chemo isn’t really that different from cake and champers!
I had a picc line put in on Monday and today I had it checked and dressing changed . My friend - Vanns came with me and sat with me for about 3 hours! It’s so much easier to cope when you are with someone who has "been at the coal face"and can tell you what it’s really like. Also shes a no nonsense PE teacher so I never got the chance to be a drama queen!!! Cant wait till Friday - let battle commence! x
Maria
hi marie, so sorry to hear you are having a down day, but reading your post i think i would be the same, hope you find your snap soon, if you have no chemo till the 27th enjoy jumping off the roller coster for a while enjoy christmas ready to jump straight back on, and hopefuly by then you will be stong enough to take round 2 x
as for losing your hair i hope you get a good realationship with cher very soon.
sending hugs lolly xx
Thanks Lolly. Me and Cher have made up. The beret sorted us out.
Morning all,
First of all hello to Jus - you sneaked in under the radar somehow. I blame chemo brain.
And also hello to Maria, how lucky to be supervised by a PE teacher. If you try to run away she will get you.
Cybele - glad you are feeling a bit better. I know what you mean about red wine - it tastes like vinegar as well. I started drinking the odd glass off sweet rose wine during FEC when I would usually have laughed at such nonsense. I could only really taste sweet things. I too have freaky sense of smell - make sure the windows are shut in petrol stations.
Cathie - I’m glad my bowels moved you - Movicol is a fairly drinkable laxative that will shift concrete. Ask your nurse or doc and get some in hand.
Maire - I was sorry to see things go a bit wrong for you - lots of people have a wobbly the day they lose their hair, but you had a treatment problem as well. Why can’t cancer let us deal with one thing at once? I would say (a) enyoy your Xmas reprieve, then (b) go back and ask about the treatment and your heart - is there a scan of some sort you could have? At the end of the day, if your heart can’t take it then you should not have it. Glad you made up with Cher, as several other users of this site would happily take her in, and then where would you be?
I am unable to sleep. Maybe its the looming dose of Gemocide. Maybe it’s my stupid neighbour who thinks now is the time to start a feud about where his dog should be allowed to sh*t (my garden, apparently). Maybe its the fact that I can’t see my family for Xmas cos they are already full of colds. Maybe it’s because I have f*cking cancer.
x