Thanks Alex2016,
I have to have my PICC line replaced before the chemo today. Aaaah!
It refused to give blood on Wednesday and has not been in the right place since it was put in. Let's hope it all goes without a hitch. I know what you mean about it feeling wrong to have to go through it all again.
Hello to all the other ladies too, my foggy brain won't retain all your names and individual circumstances the moment I leave the page to write this reply ( must get a pen and paper and write it all down)
I may be on my own today at the chemo unit. My husband is helping my daughter and partner move house. I feel a bit guilty that I haven't been a help. My granddaughter has been a joy. I lifted her out of the bath the other evening and she told me off! " Nana, you are naughty to lift me! You have a bad arm and a sick booby "
She has got over her shock at my cropped head.
My wig is too hot to wear in this weather.
Morning everyone,
hope you are all doing well. I am very pleased to say that I am. Even about to try my first coffee post EC2!
I have been pondering how I can best take care of myself over the next few months and wondered what you are all doing?
I was doing a lot of cycling and walking prior to diagnosis and want to keep these going as much as I can, at least walking the dog every day (excluding the dark days of course). But I feel I ought to do more. Had decided to start Pilates but now can't face the idea of being with a group of healthy lovelies as a uniboob bald person. So I have been looking into options in the cancer arena - Pilates/Tai Chi/Gentle Zumba run by physios/ Maggie's Centre/ Macmillan - but I am not sure I am ready to define myself by cancer either. Does this make sense?
Also wondering about eating better. I am still watching my weight and cutting out alcohol (bar the odd glass of prosecco!). We mostly home cook and have plenty of fruit and vege but should I be taking diet more seriously?
My final ponder is about socialising. I have always liked to have things planned and in the diary and find myself itching to do this for my good weeks but also being cautious about being in busy places or planning too far ahead. I guess I need to chill about it and seize the day more - accept a new modus operandi!
Would love to hear your thoughts and tips x
Thanks for the encouragement guys, saw my lovely surgeon today and he's reluctant to put in a port and certainly won't even consider it until the clot resolves. So I'm still left with no idea how they're going to get the darned stuff into me for my second FEC next thurs!
Hazel, so sorry you're still feeling rough, hope today was better. And I hope everyone else is coping ok at the moment.
Hugs to you all
Pookie (of the very soon to have no hair variety.......it started coming out an hour ago!) xx
Evening Ladies,
Had to go back to bed again this afternoon as still feeling a bit rough. Not been out the house since chemo on Friday. Still, hopefully will feel a bit better tomorrow.
Pookie - What a shame about your picc line, you poor thing! When are you having your post inserted? You've been really unlucky. I'm sure they'll get the port in no problem at all and you'll be "up and running again" for your chemo. Yeah, who would have thought we would be so keen to have chemo drugs pumped through our bodies. Good luck.
Oncewild - I have had to ditch the ondansetron as it causes severe constipation with me. I'm getting by on metaclopramide during the day and lorazepam at bedtime. I have been prescribed metaclopramide previous to having Breast cancer for a bad stomach and a phobia of vomiting. You're absolutely right, it does empty the stomach contents, for me this stops me being sick but it tends to "come out the other end". It can also make you a bit drowsy. I find it helpful for hearburn too. One of the chemo nurses told me that the steriods are the cause of the heartburn?
I have also had another shedding of hair last night but at least it's cropped to a number one now, I wish it would just all come out if it's going too.
No steriod bum for me as I take all my steriods orally (I think?).
Bookworm, Alex, Bella, Taran, Flopsy, Diane, Suze, pheww, had to type that fast to remember and sure I've forgotten one or two, Take care of yourself all of you and very Best Wishes.
Hazel. xx
Thanks Bellaboo. That has given me hope. I'll certainly mention it to the nurse. They were in a bit of a rush last time so I had it all done very quickly.
Hello Alex,
I haven't lost any hair yet, but the roots feel a bit more sensitive than usual so I'm sure something's happening! It's gone rather lank and flat. My husband has the clippers at the ready. I shaved his head when he had chemo so he'll do the honours for me.
I hope you have some nice scarves and hats lined up. I look terrible in hats and probably even worse when I have no eyebrows. I got a wig through the local hospital, but most people I've met who've been through chemo ended up not wearing theirs. We'll see. Hope you have a good week. x
Hi Oncewild,
Hope you have turned the corner.
Metoclopramide didn't do anything for me as I was throwing up AND I also felt better after eating with something in my stomach. Meto also has a whole lot of neurological and other side effects. It made me feel like a zombie and so dizzy.
In the end the best combination for me has been
Cyclizine
Levomepromazine
Ondansetron
and the steroid Predilson
(and that is after trying a lot of different drugs)
Hi Diana, good luck with the next one on Friday. I found the so called 'prickly bum' quite painful. I have a picc line and on my first one she put the steroid straight in and I found it uncomfortable. On my second one she put it through the machine before going straight in the picc line. This meant I had no problem and the nurse even said she prides herself on not giving her patients a prickly bum!! Hopefully on Monday I get her again. Ask your nurse if they can change how they do it. Xx
Hello ladies,
I have my second FEC on Friday and I'm hoping I won't have as much nausea and vomiting this time. My onc has given me Emend to take an hour before and another two for the following two days.
This may sound like I'm being a wimp but the thing that is worrying me most is the dexamethasone infusion. The so called prickly bum sensation lasted a lot longer than just the 30 seconds I was warned about..and it really hurt! I hope that this time , if the meds are given slowly, it won't be so bad.
@Bookworm48 wrote:Hi everyone. Sorry to hear some of you have been through such horrid side effects. Me too......turned a corner this weekend but have my next EC tomorrow with barely a let up due to this fortnightly regime. Had my bloods done today as my liver function has been odd and was half hoping for a few days grace but I'm good to go tomorrow. Dreading it. We all know what to expect now........I actually find it as much mentally as physically challenging. I get so low particularly when the steroids finish. Horrible. Anyway, it is my last EC tomorrow before I switch to Taxol weekly. Worrying about that already!! Sending hugs to you all. Xxxx
Hi bookworm, just nipping over from April 16 to say that I had 3 cycles of fec and was changed to weekly taxol after 2 cycles of docetaxel. Although i only needed 3 weeks of taxol it has been tolerable and have only had steroids with the infusion so don't seem to get the "crash" effect xxx
Correction to my post below needed as I have been reading up anti- sickness meds. Metoclopramide's role appears to be to empty the stomach, thereby hopefully stopping nausea, rather than stopping nausea. That's probably why it didn't have the effect I was hoping for. I will explore more with the docs.
Good luck Bookworm and hope you are on the mend Pookie - sleeping in your own bed is so good after a stay in Hotel NHS.
i am cautiously saying I have turned the corner. Had a relapse yesterday en route to orthodontist for my daughter's long awaited brace removal and thought I might not be able to see it through but luckily managed. Her stunning white teeth, hidden for 2 years, are worth it. Anyhow had a few grim hours then started perking up late evening. Managed a light breakfast so hopefully on the up now. Have lost 6lb in the process (which is a good thing for me) - whoohoo!
Going to to talk to docs about anti-sickness meds as I don't think the Metoclopramide is doing anything. At least I will feel like I have tried to make EC3 better.
Hope you all have a good day.
And pookie, reverse rain dance....superb xx
Pookie I have a port. The scar is very small and it is very straightforward having infusions. Any questions if you do have one don't hesitate to ask. Sorry you've had problems with your picc xx
Good luck today Bookworm. Pookie sounds like you've had a tough time with your picc line. Can you now stop the blood thinning injections? Hazel and Oncewild I hope your both feeling a bit better today. Another cold rainy day here so a day of cooking me thinks xx
Good luck today Bookworm. I've heard that the weekly taxol can be less hard with the side effects, so hopefully, once you're over this last ec it might be easy!!
Hazel, I really hope you're starting to feel better, getting through that fog is tough. And yuk, everything tasting like ovaltine, not nice even at the best of times. For me, the worst taste was water. It was just disgusting, like stagnant pond water. I know I didn't drink enough because of that so this time I've stocked up on fizzy water and elderflower cordial.
ive just come out from two days in hospital as they've had to remove the PICC line. Grr, now they're thinking about putting in a port under the skin on my chest. I'm absolutely gutted as it means more surgery and yet another scar. I'm sterling to feel like Frankenstein's monster. Still, if it works and I don't get any more blood clots I'll be happy. Who would have thought that my biggest difficulty would be actually finding a way of getting the chemotherapy drugs in!
Ive been lucky though with the side effects, apart from one night with awful pains (I think from the Senna tablets!) and one night on day 4 or 5 when I felt dead (!!!), I've actually been ok. Fingers crossed number 2 will go smoothly.
And for all of us with children, I'm going to do a reverse rain dance in the hope that the sun will come out and they can have a bit of fun.
Pookie xx
Thanks Alex and Hazel. Yes, they tried the steroid tail last time. They said this time they will tail it off even more gradually!Just dreading taxol when it's every week. Not sure steroid wise how that will be. Even though I'm using the cold cap I've lost loads of hair. Delightful bald crown. Dont know whether to cold cap today or not. I would like to hang onto my fringe. This illness takes so much from us doesn't it. My 9 year old daughter is going for a 2 night sleepover with her friend. Hopefully she will miss the worst.... so hard for the kids isnt it. My teenage boys have been great. Not quite the summer holidays they were expecting but they're making the best of it bless them.
Hi everyone. Sorry to hear some of you have been through such horrid side effects. Me too......turned a corner this weekend but have my next EC tomorrow with barely a let up due to this fortnightly regime. Had my bloods done today as my liver function has been odd and was half hoping for a few days grace but I'm good to go tomorrow. Dreading it. We all know what to expect now........I actually find it as much mentally as physically challenging. I get so low particularly when the steroids finish. Horrible. Anyway, it is my last EC tomorrow before I switch to Taxol weekly. Worrying about that already!! Sending hugs to you all. Xxxx
Evening ladies,
Just a quick post after scanning your posts. I've been feeling very sleepy, weak and lethargic since my second TC chemo on Friday. Also pretty spaced out, can hardly keep my eyes open and I'm still on a reduced does of steriods which finish tomorrow. Still, hope to feel better as the days go on.
Sorry to hear of those of you suffering from Side effects, sure they will improved soon and pleased to read of those whose side effects are now turning a corner.
Oh, and everything is starting to taste like "ovaltine" again, bluergh!!
Take care everyone.
Hazel. x
I'm so sorry to hear about the problems some of you have been having. I think I've had a really easy time on my first cycle of FEC, except for the first few days suffering from nausea. I'll probably get clobbered next time! Sending big hugs to all of you who are struggling a bit, and hoping you feel better soon.
Oncewild,
It could be a question of getting the right meds for your nausea. Don't be afraid to ask for other types if you have someone to contact - even your GP. If I could go back in time I would do that as I am now post FEC (had 3) and 2 out of 3 T&H down but it has taken this long to find something to control the vomiting and nausea. It tooks phone calls to my Oncologist's secretary and the help of a MacMillian community nurse though.
My first breakthrough was adding a drug often used for motion sickness (Cyclizine) and then two others from different groups. There are about 6 different approaches to anti-sickness with drugs in each catagory so it may be a mix and match approach covering the different areas.
We are all different so your optimum anti-sickness drugs are sure to be different as well.
Hope you feel better soon though.
Hello everyone
Hope that you are all doing well. I have had a very grim weekend after EC2 on Friday eve. So nauseous despite the range of meds so I took to bed and stayed there for 48hrs. Feeling marginally better this morning so hopefully I have turned the corner. The thought of another EC in three weeks fills me with dread. I hate this disease!
Wow Pookie, that sounds awful. There really are no straightforward choices. I was worried about cannulation yesterday but the nurse found a virgin vein I can't even see and popped it straight in.
Still lying in a darkened room but feeling better after a slice of marmite toast (what is it about marmite that makes everything better?) and a glass of tonic water - not sure this was such a good idea. Still feeling grim but apart from the two hours of nausea yesterday evening, touch wood, doing ok.
My coming home from holiday sadness was not lifted by the thing I was hoping for (the flipping holiday insurance company paying up for the two weeks in Cyprus we had to cancel) but by something rather wonderful - a knitted knocker!!! It arrived in a lurid pink plastic envelop with 'Knitted Knockers' all over it - well if the postie was in any way curious about why I have been at home, he knows now! Anyway it is BRILLIANT! So soft and light compared to my 600g prosthesis. The latter looks pretty real in situ but so heavy I can't wait to get it off. 'Made by women for women' my knitted knocker came with a little note from Carol, the knitter, along with a brooch she crocheted for me. Such a lovely, lovely thing to do, I feel really touched.
Hi all, sorry for my quietness, I've had a slightly rubbish week with PICC line problems........which is why I thought I'd just drop in as Hazel was talking about getting one.
i don't want to put you off in the slightest and I'm still happy that I've got mine in place, but I've developed clotting around the line which is apparently quite common. The result of this though is that I now have to give myself daily blood thinning injections for the entire course of my treatment to minimise the risk of further clotting and there's a possibility that I won't be able to keep the line. (I'm also now paranoid about travelling blood clots going to my brain - never been a hypochondriac before!!)
i didn't really have an option but to have the PICC as I have really small veins and am having 3 FEC + 9 taxol but I sort of wish I didn't have to have it!
On the plus side, I know many have had zero problems with their lines and it definitely does make the infusions easier.
Just wanted to add my experience for you as knowledge is power : ))
pookie x
Good morning all,
hoping your treatment is going well and that side effects are manageable.
If you should struggle with indigestions there are some brilliant tips here
Taking care of your veins might also be important, especially as I have had some challenges and there was much differing advice out there.
So before you start to struggle you might find this link of help -
Should you experience any challenging side effects please ring your chemo team/chemo helpline/ oncologist/GP/Breast Care Nurse. They are there to help! Never think you might not wish to trouble them with something you may think will go away/be better the next day. Some side effects can have a cumulative effect and dealing with them at the outset, will make it so much easier down the line.
Hoping you all have a wonderful weekend.
Hugs
Sue xxx
Sorry to hear about your hand Hazel, I know how bad it can be when they have to keep trying over and over again. On my last FEC the nurse gave up after 3 and got someone else to do it. Since then (2 x T&H) it's been right first time. I'm soaking my hands in very hot water now.
Had my second T&H yesterday and was there over 5 hours in total but I am using the cold cap still and that adds to the time.
Also had the red, hot blotchy face this morning.
Hope the side effects stay away for you this time, Hazel!
Hi all,
Well, had my second TC chemo today. Only there for 3 and half hours this time, as first time took 7 hours due to having to be monitored for first herceptin injection for 6 hours. It took three attempts to cannualate me despite the unit warming my arm in warm water beforehand. My hand and wrist are covered in bruises, not sure my arm is going to hold out for the duration of chemo. I asked again about a picc line but they seem very reluctant to do this, it is a very busy unit and I suspect their reasons for trying not to put one in is for their own best interests, but also feel they have my best intersts at heart too. They said to see how my arm was in a week and if it was still sore, phone them and they would arrange a picc line. By the way, Belle has posted a very good thread on veins in the August starters thread, it's definitely worth a read. I'm off to wrap my arm in my hot water bottle now.
No side effects as yet, but it's still early days, hours so not counting my chickens. Very tired but not slept well last few nights and also I get Piriton through my drip which is probably making me drowsy. Was going to go for a nap but will try and stay up, eat a light dinner and have an early night.
I woked up with a "red steriod face" which has thankfully subsided a bit now. Never had this the first time. Also, got puffiness and swollen ankles from steriods.
Oncewild, hope your treatment went without any problems today and also wishing you minimal side effect over the weekend. Like you say, another one ticked off the list.
Best wishes to all and have a good weekend.
Hazel. xx
Hope it goes well for you today Hazel, and over the weekend too. We can both tick another off after today!
Hi Bella boo, so far I am doing ok, no nausea so meds must be working! Early days yet but I guess it is a case of one day a a time.
Thinking of you
Taran,
you do deserve it - truly!
xxx
Oncewild good luck with your EC tomorrow, just keep thinking of that zip wire, you can do this. Taran keep smiling and we'll all smile with you 🙂 Madhatter how are you feeling today? Anyone heard from Nellie I hope she's ok and is quiet because she living the high life till the next one. All good here and making the most of feeling well. Xx
Taran,
you are an inspiration - you have my total and utter admiration.
Huge hugs
Sue xxx
Aww OnceWild, as Taran said, coming home from holiday is always a come down, but sounds like you had a brilliant time with your family, as you kept us updated with some posts on here. So when you get your EC2 tomorrow just try to hold on to the memories of your holiday and never give up dreaming, it will help get you through.
When were were coming back from a lovely sunshine holiday in June, I felt exactly the same as you are feeling today, knowing I was coming back to face further surgery (ANC) and then chemo a few weeks later.
Dont be giving yourself a virtual slap either lol. I'll provide a virtual hug. x