B74
Member
Posts: 37
Registered: ‎06-12-2018

Re: January 2019 chemo starters

PS G - you didn't recently come off dexamethasone/decadron did you? I was in a pit of despair for a couple of days after that

B74
Member
Posts: 37
Registered: ‎06-12-2018

Re: January 2019 chemo starters

I've become the most apathetic creature in existence. It's not a lack of physical energy (I can go for a 1 hour walk without difficulty), but all the oomph has been stripped out of me. I never used be be someone who could sit and stare blankly at nothing for an hour, I was always Go! Go! Go! Although I do keep just falling asleep on the lounge, so tiredness must be a part. I'm beginning to really wonder who/what I am. 

 

I take my hat off to those of you who are working through this. I'm on 3 weeks sick leave at the moment and really debating what to do after that. I've been at the same workplace for 18 years and have accumulated a LOT of sick leave - so it wouldn't be a problem to take a break until I'm done, at least with the horrible AC part. Plenty of people have told me to just take sick leave and focus on getting better. But I'm not focusing on getting better, I'm focusing on a blank spot about 30cm in front of my face. At the same time I'm not sure I'd be any use at any kind of work except maybe licking envelopes - which is about as far from my normal job as you can get (I'm a project manager).

 

What is everyone else doing about work?

Member
Posts: 7
Registered: ‎06-12-2018

Re: January 2019 chemo starters

Hi All,

 

Thanks so much for all the information, it has been invaluable and to meet you all as well.

 

I hope the Nurses can tweak my meds slightly so I am not as sick the next time. 

 

Kip, thanks for the info on the T. I will be getting Docetaxel.

 

I have had such a sore tummy, unfortunately it is normally very sensitive and I try to avoid tablets at the best of time but now I am like a walking chemist 😂😂😂😂. Needless to say it has certainly taken a beating so the Oncologist put me on a 2 week course of Omeprazole in the hope that it will calm down the stomach and acid reflux. Oh the joys of having chemo!!!

 

With regards to the bag packing for getting my first chemo.......it was hilarious. I also took everything but the kitchen sink. Pillow, blanket, sandwiches, iPad, phone, slippers the lot and I have to say I was so disappointed when I didn’t use one thing apart from the water bottle I took in. The nurses were in stitches. I was only in for an hour and back out again. I am known to carry quite a lot of extra luggage when I go places. 

 

I have my wig appointment on Friday, I am taking my Mum and some friends just to lighten it up a bit. Let’s hope one catches my eye. I am in Scotland so I do get a wig on the NHS, no idea what they are like mind you.

 

OK, so I think I may have prattled on quite enough now and I should really go to sleep.

 

I hope you are all doing well (as well as can be expected). I do really appreciate the cyber chats albeit that I might not be on all the time. 

 

Take care and lots of love xxxxx

 

Highlighted
LB
Member
Posts: 22
Registered: ‎10-12-2018

January 2019 chemo starters

My first day after first chemo - I felt like I could run a marathon this morning but that wore off later 😀 I found I was very hungry and eating something like a cheese cracker helps a lot. I got on fine with my first injection - my friend’s best advice - pinch the clump of skin hard then you feel the pain of that and not the needle- it works. I haven’t had much nausea but my mouth feels awful and the best thing i’ve tried for that is the Difflam oral rinse that they gave me in my pack of drugs to bring home. It’s great that we’re sharing our experiences here and I get a lot of help from all the tips.
Member
Posts: 12
Registered: ‎19-12-2018

Re: January 2019 chemo starters

Well done Welsh J!  We're getting there.

 

I'm glad it was so much better for you than you thought.

 

Deb

x

Member
Posts: 4
Registered: ‎07-01-2019

Re: January 2019 chemo starters

Hi debs, first chemo session done, was there all day but better than I expected. Really comfortable and excellent nurses explains all the drugs. I also cold capped and due to the great effect of piriton dozed for most of the time. Have had some nausea and joint pains but bearable with paracetamol and anti nausea pills. Went out or a walk today, 1 down , 11 to go. Good luck to you and all our fellow battlers we will get there.

Member
Posts: 1,751
Registered: ‎21-06-2017

Re: January 2019 chemo starters

I also meant to say, that I was fine after I'd had chemo and went home and ate dinner! (I didn't have anything too heavy to eat) I was also ok the next day, just a little tired. I found with me that it was day 3 before I lacked energy and needed to sleep x

G
Member
Posts: 24
Registered: ‎09-10-2018

Re: January 2019 chemo starters

Hey ladies, suddenly it’s got very busy with us all starting/about to start the next bit of our lives. Thank you to those still sharing, appreciate. I have been a little quiet since I started chemo. I feel pretty rubbish emotionally all of a sudden as well as feeling really nauseas still which I hadn’t anticipated. Thank u for helping me to see all of this as normal rather than a failure in my managing of the situation! Thank you, G x
Member
Posts: 1,751
Registered: ‎21-06-2017

Re: January 2019 chemo starters

Helen, when I went for my first chemo session, I think I took everything barr the kitchen sink, but I didn't really use that much!

On my unit there were volunteers who came round with hot drinks regularly. I took snacks with me as well.

I painted my nails a dark colour before I went, but I think it could be T that affects them,not FEC. 

I was told to use Simple products on the hair and to wash with.

As others have already said, when you have FEC, you'll have a chemo nurse with you most of the time whilst it's being administered and to chat to, so if anything is worrying you.you'll be able to ask them.

I used the cold cap for my first 3 sessions-you have it on before and after the chemo,so it adds quite a bit of extra time to your chemo session. It is very cold, but once you get through the first 10mins, you don't notice it so much. The nurses put a towel round my neck and gave me a blanket. I also took a fleece with me. You'll need to take some Simple conditioner with you and a headband if you've got one.

Don't eat or drink grapefruit, it can interfere with the chemo, I'm not sure how though.

What time have you got to be there tomorrow? xx

Member
Posts: 1,751
Registered: ‎21-06-2017

Re: January 2019 chemo starters

Thank you Sunnydaze, that's very kind. I've finished chemo, I hope you get on well with your 2nd FEC.

I've told my family that I need to do more cooking, they didn't look too thrilled! Smiley Happy  xx

Member
Posts: 25
Registered: ‎06-10-2018

Re: January 2019 chemo starters

Good luck Helen Bumblebee, it’s not as bad as you may fear. I just took my hubby along. I couldn’t eat or concentrate on anything. I think I was too stressed. I didn’t cold cap, I couldn’t bear the thought of ice on my head, but everyone is different. We will be thinking of you. It’s treatment just to make us better....X
Nelly McNelly and Jencat, I’m a December starter too. 28th Dec FECT. Number 2 on 18 Jan. Good luck for your second one too ladies.
Hey Kip, Bingo ! I’m in Beneden too and was aware of the £1500 . I haven’t used it to buy a wig, they’re free on the NHS in Scotland, so that’s a very good thing, but my family and I do plan to have a slap up break away in the UK when all of this is done. It’s a good bonus.😊
Also B74, I ordered “The cancer fighting kitchen” book by Katz and Edelson and it arrived last week. It’s a very informative book. I got a cheap second hand copy off Amazon. Today, I made the Middle Eastern chick pea burgers with a celeriac, fennel and apple slaw. Delicious. Thanks for the tip. Cooking is something I enjoy doing and it keeps my mind off things, when I’m not feeling grim of course.
Sunny daze xx
Member
Posts: 1,751
Registered: ‎21-06-2017

Re: January 2019 chemo starters

Just a quick reply Helen, will reply properly after lunch Smiley Happy Have you thought of using sea sickness/travel bands whilst you have chemo? You can buy them from the chemist and I wore them whilst I had the chemo and for a few days afterwards. I wasn't sick once during chemo and didn't feel very nauseous either. I don't know if the bands really did help, but they're worth a try xx

Member
Posts: 10
Registered: ‎17-12-2018

Re: January 2019 chemo starters

Hi there - like DiKat I'm a December starter but just started FEC on 20 Dec so I hope you don't mind me popping onto this thread too.  

 

HelenBumblebee - I think FEC for everyone is administered by the nurse rather than by being hooked up to a drip so you tend to have someone sitting with you for a lot of the time.  I took a book and some music but didn't end up doing anything with either as I couldn't really concentrate on anything.  I also think (?) that they tend to keep an eye on you for the first session in particular so you're not really left alone that much?

 

I would suggest taking some "entertainment" with you in case you need it and some snacks and a water bottle.  Oh - and a pen and paper so you can take notes about the bag of drugs they send you home with.  I haven't cold capped but I'm sure someone else will provide some advice on that - I've heard that it is worth taking a blanket.  

 

I was dreading my first session but the actual session itself was OK.  I felt OK immediately afterwards - just had a foggy head but then I slumped quite a lot during the afternoon/evening afterwards and felt very nauseous and out of it.  I was then really tired and off my food for a week or so and then have been generally up and down for the next 2 weeks with no real pattern as to "good" and bad days.  

 

The main problem for me has been not knowing what to expect by way of side effects and wondering whether the slightest sniffle is about to turn into something I need to phone the hospital about.  I've also been taking my temperature probably WAY too regularly - it's all enough to turn you into a paranoid wreck!!!

 

Member
Posts: 4
Registered: ‎07-01-2019

Re: January 2019 chemo starters

B74 and Jencat, you're both so kind, I'm speechless, thank you.
Tomorrow is looming and I'm getting myself tied up in knots. I haven't had time to explore much on this forum or even read more than a couple of articles on the website, and the rest of today is hectic (probably a good thing as I'm not left in my pwn company for too long with time to think and stress!), so I don't think I'll get to browse much and could really do with some advice (sorry if it's already been said and I've not seen it).
Yesterday's workshop was ok but I'd hoped for more tips and suggestions regarding what to take tomorrow. I know we're all different so some of us won't want to read or consider sucking a peppermint, but I just wondered what people would recommend for snacks, drinks, comfort levels, thimgs to do.
I've got fruit and squash to take, some chewimg gum and plain biscuits. I'm FEC initially, moving to DOCET in due course, and wondered how others have find them in terms of severity of side effects. Should I take a blanket? Or slippers? Or is that daft??? I've been offered a cold cap so will all of me feel freezing cold???
I've heard references to painting nails. Should I do that tonight or wait and see what happens with discolouration?
I've been told minimal hairwashing is best, with extra mild, unscented shampoo and no heat products afterwards. I've heard some say to use baby champoo while others have said it's a deifinite no. I've got Simple Mild Shampo, should I have something else ready?
I've got a journal to take to write in, a book and an ipod. Good ideas or bad?
Kip
Member
Posts: 914
Registered: ‎27-04-2018

Re: January 2019 chemo starters

Glad to be of help to you, I gained all my info from ladies who had gone through this previously too.

I totally get the scanxiety too.. the waiting around has to be the worst thing ever!!

Just had another thought... not sure if any of you are members of Benenden Health cover?   I am, and whilst they don't cover cancer treatments they are really good at supporting financially.  They allocated me £1,500 for a year to pay for any new underwear or special clothing, head cover (a wig etc), travel to and from hospital appts, car parking and also pay for up to 4 nights away for you +1 as recouperation.  Really helped, after my Masectomy I brought loads of new underwear and they paid and they also funded my wig and have just booked a 2 night stay away in Feb for me and hubby as a treat and they are paying too!!  So might be worth checking if you have any private health insurance that they may help you out.  Got to be some perks somewhere in all of this!!

 

kip

xx

Member
Posts: 67
Registered: ‎26-12-2018

Re: January 2019 chemo starters

Hi everyone

I'm from the December thread but keep popping in on this one as well as only had first cycle in December and having 2nd today so not very far in front of everyone.

Kip, it's really useful to hear from people like you who have experienced all of this. I ended up being hospitalised for 5 days, 8 days after my 1st cycle with neutropenic sepsis and I didn't act quickly enough on my mouth issues, thrush, mucositis, ulcers etc. So feel this probably contributed. Your mouth care info is great and I intend to take much better care this time and shout as soon as something is wrong.

Thank you and love & hugs to everyone 

Member
Posts: 25
Registered: ‎06-10-2018

Re: January 2019 chemo starters

Hi Kip
Thank you for your informative reply. The ‘T’ stuff was especially helpful. Thank you for addressing some of my issues too. Re; hip pain. No, I’m not having the injections yet, so goodness knows what is going on. I did ring the hotline and they are monitoring it, so that’s good and my GP prescribed painkillers, but they didn’t really work. Maybe I have an arthritic hip going on at age 49 😥. I was actually paranoid that the cancer had spread to my bones, but I have just had the results of both a full bone and body scan pre chemo and thank the Lord, the scans were completely clear. Relief. Waiting for scan results, is one of the worst things we have to go through, I think “scanxiety” it’s true and it’s very real.
Ok, enjoy your day
Sunny daze xx
Kip
Member
Posts: 914
Registered: ‎27-04-2018

Re: January 2019 chemo starters

[ Edited ]

Hi ladies, good going, you are all doing really well!!

Sunnydaze - the hips pains... are you having to have the self administered injections to help with the white blood cells, if so these cause bone pains for a few days or sometimes just a few hours.  But the FEC chemo does affect some people in this way, speak to your chemo hotline if you are worried, they will put your mind at rest.  Sounds like you are finding ways to get through the sickness, if the tablets help then just check with your hotline that its ok to take them for longer periods, I would have thought that if they give them to you they must be ok, my chemo nurse used to call mine the "as and when" tablets and to take them as and when I needed.  Just double check but if they help then take them, don't suffer unnecessarily.

Many of you have asked about the T part of chemo regimes.  I had 3 x FEC and 3 x T (mine was Docetaxol).   As with all of this stuff everyone reacts differently.  I met a lady at chemo who was awful on the FEC and sailed through on the T, some have the opposite. T didn't seem to come with sickness/nausea feeling for me, and a lot of others said the same.   I personally found that on T, the SEs didn't kick in quite so quickly, about day 5-6 and the worst bit was the "lardy carpet mouth"... thick white coating on my tongue and everything tasted slimy.   During my first T I got really bad oral thrush and ulcers but it was my own fault I didn't call the hotline on the first day it started and let it get really bad before I did anything.  Once I had been prescribed flucozonale tablets it sorted it out and for chemos 5 and 6 they gave me these tablets with my bag of goodies and I took them as soon as I felt a little twinge in my mouth and the thrush and ulcers never reappeared.  i did still get the nasty lardy mouth but not as bad.  Keep on top of things, ring that hotline if anything starts happening and nip it in the bud!!  I also used to make up a bottle of cooled boiled water with salt in it and regularly gargle with that, it helped cutting through the lardiness and also kept the ulcers at bay!  Unfortunatley by the time you get to the second part of your chemo you tend to already be a bit more tired to begig with, but again there are ladies on here who have sailed through and found the T much better.  I still managed to work during my T treatments (at home though). ... good news was my hair started growing back on T (which my nurse said is quite common)!

And weight gain.... I gained lots of weight over the year, but just decided to deal with that after everything was finished.  You need to eat what you can when you can, the steroids don't help either, they make you hungry too.   Better to have a bit of weight in reserve to help you fight I reckon (thats my excuse anyway)Smiley Wink

Take care

Kip

xx

Member
Posts: 25
Registered: ‎06-10-2018

Re: January 2019 chemo starters

Hi ladies,
Great to hear from you all, along with your little stories, they give me strength, comfort and knowledge to help me in what is a truly horrendous journey.
I am now 12 days in, another 9 days to go before the dreaded round 2 . (3XFEC 3XT). I felt pretty rubbish for the first week, but definitely by day 7 I felt only “mildly hungover”, after feeling fuzzy headed, nauseous and a wee bit dizzy for the first 6 days. It wasn’t a good place to be, but here I am on day 12 congratulating myself on getting here, thinking it wasn’t/isn’t that bad. Ha ha, who am I trying go kid???
I did want to ask whilst I am on here if anyone else suffered joint pain on their first dose of FEC, my hip was in agony, both sides and it kept me awake at night. I did have hip problems in child birth, 12 and 14 years ago now, but my hip problem decided to resurface days 3-8. It’s mostly gone now, thankfully. A chemo nurse told me chemo is good at finding your weak spots, if you are prone to cold sores etc, you are more likely to get them. I didn’t think joint pain was such an issue with FEC, so goodness knows what I will be like on ‘T’, which is known for joint pain s/e’s!!!
I am sat here now just wondering what has helped me get through to day 12 so far . Other than double dose anti-sickness tablets 🤪 I’m still taking up to 2 a day metoclopramide anti sickness tablets for those horrible waves of nausea, but I just read it’s not good to take these tablets for more than 12 weeks because of the s/e’s. Does anyone know about this because at the moment I feel they have helped me loads. I also think drinking between 4 and 6 pints of water a day has also helped me feel better. My appetite hasn’t diminished at all, rather quite the opposite. I have wanted food in some shape or form in my belly to fight off sickness. I have been eating really well, mostly plant based, no processed food, but lots of chicken, fish and whole grains. I think this has helped, but I am slightly concerned about the size of my waist line by the end of this!!! I had a lovely flat tummy in November when I had an immediate DIEP reconstruction. I am not sure my tummy will be as flat come the end of April, but if it means I will be cancer free, I can work on my weight in the summer.
I live in Scotland in the Scottish Borders so I have made myself go out for a walk in the countryside most days, even if it’s only been along the lane and I felt this has helped me too. Mind, body, spirit.
I was listening to Woman’s hour on the iplayer yesterday, it was the New Year’s Day edition and it was about resilience and fear . Sophie Sabbage, a lady I hadn’t heard of before, but have since found out has written a book called the “Cancer Whisperer” said this about resilience and digging deep and it really struck a chord with me and maybe it will you too, especially since we’re going through stuff just now....
“It seems to me that our resilience is found when we are brought to our knees. It’s the opposite of toughing it out. It’s birthed by our vulnerability and it’s an inner force we tap into, that we didn’t even know we had and it becomes an even greater force when we can’t carry ourselves. It’s a power we find in our most powerless moments.” ❤️
I find this quite uplifting to hear someone so articulately expressing our ability to find strength when we need it and breast cancer ladies 😢 we have this strength and can find this inner strength in bucket loads when we need it. 💪
Love to you all,
Sunny daze xx
B74
Member
Posts: 37
Registered: ‎06-12-2018

Re: January 2019 chemo starters

Hi Helen, I'm thinking of you too. This diagnosis sucks so badly for anyone, let alone if you're young and it screws up all your family/baby plans. I also know what you mean about chemo being far scarier than surgery. I was blase about losing a boob, but I really wanted to run away before chemo, and even more so afterwards, I swore there was no way anyone could drag me back. They're such long days when you're feeling sick. But one by one they go, and bit by bit you feel better. Today I'm on day 6, and we actually went out shopping so my daughter could buy some old secondhand t-shirts to cut up and re-sew, and I feel pretty normal. So I've survived one round! Much as I wish I'd never got the diagnosis and never had to do chemo again - I did - and I will - to beat this bloody cancer and get my life back. We all will.

I hope you have some support from friends and family even if they can't possibly understand what you're going through. Take care xx