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January 2019 chemo starters

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Re: January 2019 chemo starters

Hello everyone
I am glad everyone’s chemo is going ok so far. I’m afraid I can’t offer any help re; cold capping or picc lines, because I have no experience of them.
Gencat, I am glad your return to work has gone ok. It doesn’t take long before the observations start hey! I’m sure you’ll be brilliant. I am an additional needs teacher, working in a unit in a primary school. I largely work with primary 1 and 2 children (Scotland) but haven’t worked since diagnosis in August.
Anyway, I wanted to put this out there and wondered if anyone has had bad headaches associated with their hair loss? My head feels tender as anticipated. I just wasn’t expecting the headaches. I have drunk loads of water, so I don’t think it’s dehydration.
Love to all 😘 sunnydaze
Member

Re: January 2019 chemo starters

Morning Helen, good to hear from you that everything went ok with your chemo and you're managing ok.

Yes, I thought I wouldn't be able to cope with the cold cap, but once I got through the first 10mins it was managable. I had icicles on my head afterwards! I was recommended to use Simple conditioner. (Plus Simple products for showering etc)

I had a PICC line and it was fine and didn't catch. My hospital let my ED come in with me whilst it was being fitted-I'd got the impression from the literature given that she wouldn't be allowed, but they were fine about her staying. Might be worth checking if your husband can if you'd prefer someone with you. It didn't hurt, but it was nice to have my daughter chatting to me so that I wasn't thinking about it.

I just had hospital bandages covering my arm, but it might have been better to have bought a cover as I found the bandages were either a bit too looose or tight.

Definitely a good idea to buy the plastic sleeves for the shower-I got mine from Boots, it was about £5.

It was a bit of a pain to have to go the hospital to have it flushed every 7-10 days, but on the plus side I found it quite reassuring to see someone on the chemo unit regularly. (When I had a bad urine infection it was the chemo nurse who realised that both the onc and my GP had given me the wrong antibiotics, which was the reason I wasn't getting any better!)

I had some funny food cravings whilst I was on chemo-might have been a need to for carbs. After I'd had my PICC line flushed I often fancied a McDonalds-I hardly ate them prior to chemo and haven't had one since! The nurses said it was fine, I think the main thing was that I was eating. xx

Member

Re: January 2019 chemo starters

late one here... first EC on 08.01 have 3 more to go then 4 pac. Spending time moistursing my nails with jennifer young definate beauty nail oil as read good things about it online. I cold capped - used large for better coverage even tho' I'm average wig cap size- and tied a pair of woollen tights around my head to keep it on - felt very heavy and my neck ached like hell and my face was all squashed I had it on so tight. Let's see what happens. FWIW, I'm using vit d oil on my scalp at night and minoxidyl in mornings - if you read about this online there are mixed results so I am aware NONE of it guarantees anything! I bought waterans shamppo and conditioner and planning to wash gently 3 times a week or i think my hair follicles will get clogged. I don't suit short hair so figured i have to throw everything at it and then i know i gave it my best shot whatever happens. I had nausea which disppaeared after taking EMEND anti -sickness but then it came back later in the days following my initial chemo. By day 5 it went completely. 2 days constipation from steroids and i got prunes in and drank a fibre solution - macrogol - which come in sachets and that sorted it. Nothing else to report so far - so lovely to read everyone else's journey too xx They told me at the hospital i can't eat live yoghurt while I'm on chemo and I am now convinced I'll get thrush Smiley Sad(((

 

 

Member

January chemo

Hi Ladies, I've been jumping between threads. I see my oncologist tomorrow, I've already had a mastectomy 13 November and lymph node clearance 13 Dec . It's good to be able to see what the effects of chemo are but a bit nerve racking too. I feel like I'm in limbo don't really want chemo to start but wish it would hurry up so that life can start heading back to normal, I've been off work since my diagnosis in October due to risk of infection, due to other problems had bloods taken and my own doctor has said chemo could possibly be held off white blood cells are low cholesterol is 8 and thyroid aren't good any advice please x
Member

Re: January 2019 chemo starters

Hi , I had picc line put in on 3rd January prior to my first treatment. I requested it as have dreadful veins and didn't want the additional stress of them not being found a vein. It's ok, procedure wasn't as bad as I was expecting, it was a little uncomfortable for a few days but is well dressed and taped down and the the nurses supply a loose sleeve so it doesn't catch in anything. It's surprising what you get used to in all this. Definitely buy the limbo picc line waterproof cover to make showering so much easier it's well worth it. Some hospitals supply foc, mine did but only had super slim size. Hope that has helped you.

due to have second taxol this week , can anyone tell me how the side effects are do they get worse. Last week was ok and bearable but anxouis re this week,

Member

Re: January 2019 chemo starters

Been a bit off the radar since Thursday, and wow, what a busy thread this is!!! I have a lot of catch up reading to do, not to mention thanks to give to those who helped me feel more in control by offering advice and tips - thank you so much!!!

So, first FEC is done and, apart from a swimmy head and ridiculous tiredness, I seem to have managed ok.

I did the cold cap, which surprised as, after just 2 minutes in it was unbearable. My husband set a 15 minute timer on my phone and I kept watching it to get me through the worst bit and, once the nurse was there administering my reds and whites, I was less aware of it.

Must find sone unscented conditioner to take though as Herbal Essences was slathered on for the cold cap and the smell made me gag terribly. Smell has affected me massively, and so quickly too, which I wasn't expecting.

I've not managed much to eat since the end of the session, and I've struggled to know what I want. I've pretty much existed on whole grain cereal, wholemeal toast, fruit and sone soup. Sweet stuff doesn't appeal at all for now.

Could really do with my tummy sorting itself out though or I'll be struggling. I'm eating dried apricots daily and taken 2 doses of Senna Max Strength in the last 48 hours, to no avail. Is that TMI?!!! Eating less and sleeping as I have been won't have helped but I haven't been able to do more.

I've been asked to go in after my next treatment to have a PICC line. Maybe I'm being silly but win't it keep catching on clothes etc? Can it be taped down? I know it's not a huge thing in the grand scheme of things but a stringing arm from catching it on everything when I dress/shower/turn in bed etc sounds quite unpleasant. Has anyone else got one?
Member

Re: January 2019 chemo starters

Thank you LB and you too xx
LB
Member

Re: January 2019 chemo starters

👍💪 hugs 🤗 to all xxx
Member

Re: January 2019 chemo starters

Yes, I felt rough for the first week too. I have got 5 days to go until my next”infusion”😵 and although I’m worried, at least I know what to expect this time🤞 I have been making the most of my time going out on my bike and walking most days and eating well. I “braved the shave” yesterday. Exactly two weeks to the day I woke up and my hair started to shed. Quite distressing even though I was expecting it. I haven’t gone for a Sinead O’Oconnor, more of an 80’s sharp flick head , with a very short undercut. It looks quite stylish and I definitely felt more liberated, not so distressed. I went with a good friend to the barbers. Barbers know how to do a good short cut and it only cost me a tenner. I liked the straightforwardness of the barber shop. Men are straight forward, no prying questions and consequently no tears. 👍Sadly, it will be a Sinead O’Connor in the next week to 10 days I guess and then baldy here I come 😥😥😥 My sister tells me I need to get my nose pierced again and a pair of big hoop earrings. Ha ha ghetto girl at 49 🤣🤣🤣🤣 Stay well and up beat ladies. Strength in numbers 💪💪💪💪😘
LB
Member

Re: January 2019 chemo starters

B74 thankyou 😊
B74
Member

Re: January 2019 chemo starters

Yes I totally felt like a dead battery! (see my post on 10 Jan for example). Feeling basically normal again now... there is definitely hope!!
LB
Member

Re: January 2019 chemo starters

G thankyou you have given me hope x
G
Member

Re: January 2019 chemo starters

Hi LB, yes, dreadful however at the end of day 7 and all of day 8 (today!) I am suddenly back. I still feel different etc however it is amazing how quickly I feel so much better...hopefully you experience this too🤞
x
LB
Member

Re: January 2019 chemo starters

Hi I'm on day 5 after first chemo - did anyone else feel like a dead battery - no go in me at all :-( 

Kip Community Champion
Community Champion

Re: January 2019 chemo starters

Hi all, steroid blues is a definite...  I always had a ciup!e of really teary emotional days once they had finished.... Famiky got to know when to tread carefully.... On the T part the steroid regime is different and i dont think i got so weepy.   It helps to know its a nirmal thing

G
Member

Re: January 2019 chemo starters

Thank you for this B74, I will most definitely have a read! x
B74
Member

Re: January 2019 chemo starters

G after such a rough week would you consider trying fasting?

I had nothing but water (& a little bit of broth for minerals) for 48 hours before the 1st infusion. I was disappointed that it wasn’t a ‘magic bullet’ and I still felt wretched - but I feel like on the whole I’ve got off pretty lightly. The acute horribleness only really lasted a day or two then I started to improve. I only took anti-nausea meds for the first 48 hours. I’ve continued to have slight queasiness, but just eat small amounts regularly and am ok. No mouth sores, diarrhoea etc and have been going for an hour walk every day.

I read everything I could lay my hands on about fasting (Longo research papers etc) but was actually more swayed by anecdotal stuff incl. this article in the Guardian (I ignored the hair replacement advice!!): https://www.theguardian.com/society/2016/jun/03/how-to-get-through-chemotherapy-decca-aitkenhead-can...

And this excerpt from the ‘Science of Fasting’ video: https://youtu.be/MnUq_H7zjXQ

Anyway... just something to think about. There’s no doubt that the fasting itself is challenging & not very pleasant, but I’m still going to continue, partly because I’m now terrified to experience side effects without it!!
LB
Member

Re: January 2019 chemo starters

G and B74 thankyou for mentioning the dexamethdrone - now I know why I feel like I do. G it’s good to know you’re feeling better - I hope to pick up in a couple of days too.
G
Member

Re: January 2019 chemo starters

Hi all, in the last two hours I have started to turn a corner and feel less nauseas, really weird how quickly I suddenly feel so much brighter! It is exactly a week since my first EC where I started feeling dreadful straight away but if this is the corner turned then this seems doable next time as I was starting to have my doubts! Hopefully now it will just keep improving until the next round🤞

B74, yes I think you are right, I was worse emotionally after finishing the dexamethasone - well noted, thank you! I guess I/you can plan this in for next time and might be more equipped to manage it or at least those around us might.

Hope everyone’s weekend is okay and massive hugs all round from moi! x
Member

Re: January 2019 chemo starters

Sunnydaze and stuck at 14, I'm a teacher too! Smiley Happy What ages do you teach? I job-share a Year 2 Class. I went back in September after having 11mths off! Returning was a bit of a shock and I was worn out by playtime the first week! My stamina is gradually increasing now, but I've cut down the hours I work xx 

Member

Re: January 2019 chemo starters

Helen, I hope chemo was ok today xx

Member

Re: January 2019 chemo starters

Hi LB, glad first chemo session went ok xx

Member

Re: Newly diagnosed starting chemo 8 January

Hi LB, I've been thinking about you, hope Tuesday wasn't too scary for you? Hopefully it went well and your haven't been too unwell xx
LB
Member

Re: January 2019 chemo starters

Hi I’m a couple of days after my first chemo session. It really wasn’t too bad and the nurses were lovely and so caring and answered all my questions. I came home with an enormous bag of drugs - the difflam mouthwas is brilliant for the craggy mouth. I had a friend who has had experience at self injection for dvt and she supervised my first jab. Her tip and it works is to pinch the roll of fat so that it hurts and then you don’t feel the needle. Good luck to all.
Member

Re: January 2019 chemo starters

That's good advice 're unions. I'm just home from being told I have to wait a week to start because I have the tiniest bit of my wound still to heal. Feel blue :-(
Member

Re: January 2019 chemo starters

Yes, I’m a teacher too stuck at 14 and like you I was diagnosed in August. I couldn’t handle returning to work with all of the emotional rollercoaster going on. Thankfully, like you had accrued good sickness benefits and I am currently taking 6months full and 6 months half pay. These are terms and conditions that have been hard fought for and I would hate to lose these benefits. The pay isn’t great, but the benefits at time of need are there. I feel really sorry for any of you ladies that aren’t covered by any sickness benefit and have no choice but to work. Financial worries are horrible, especially with the added worry of cancer. I want to give a shout out here to The Unions and one of the good things they do is if you are struggling financially and down to half pay or no pay and belong to a Union, your Union will have a Benevolence Fund. I know my Union does. You can apply to this fund for some financial assistance. My Union rep advised me that this is what the Benevolence Fund is for, for ladies like us. I hope I can help some of you, by dropping this information here. Get on to your Union...
Sunny daze xx
Member

Re: January 2019 chemo starters

Hey Mama JuJu,
I’m in Scotland too. I was allowed to get any wig I fancied. I thought the free ones would be like rugs 🤣 but they’re not. I had a very big choice from a lot of different brands. Good luck. It’s quite a thing trying on wigs. My hairdresser took a couple home and I showed my husband and kids. I said to them in preparation “now don’t laugh because I’ll just cry” anyway I tried one on and we all laughed, a lot , especially me!!!! It actually felt really good to laugh because laughter has been so thin on the ground of late. Anyway, I took the wigs back to the hairdresser and went to a different wig shop with loads of choice. This time I took my husband and we chose a really good one together. Good luck Mama JuJu I hope you rock your wig. Xx
Kip Community Champion
Community Champion

Re: January 2019 chemo starters

Hi all, just a quick thought about nail polish!   I painted my nails with dark nail polish from teh start of Fec until the end of T... its supposed to help prevent damage from UV light I think.   My chemo nurses told me to paint them with clear when I went to chemo just so they could have a check on them.  It usually is the T part of chemo that affects the nails I think... mine have lots of ridges on them (you kind of get one each chemo I found) and then white bits at the top eventually became very dry and brittle.  Only the last couple of weeks (3 months after finsihing chemo) the white ends have all snapped off quite low, not sore at all just very short nails, so hopefully now they will begin to grow again.  Some ladies do lose nails towards the end of chemo (toes or fingers) but have all said they aren't sore once they are gone and there is always nail growing underneath.  Nail polish will help to keep them in place and a bit more sturdy.

Have to say you all made me smile with your tales of all the things you took into chemo for your first one... I did exactly the same... laden down with things and only ended up using my water bottle and sucking a few sweets.  Though I did take a friend or hubby to chat to.  If you come to have T (docetaxol) its really useful to suck ice lollies whilst its being administered (its usually by a drip) as this stops it burning in your mouth.. I used to take a box of lollies and get through about 3 or 4 a session but the hopsital also had some.   Might help with the FEC too if it makes you feel nauseous?

Kip

x

Member

Re: January 2019 chemo starters

B74 I'm a teacher and had my diagnosis at the very end of August, I haven't been back to work at all. I've been told not to during chemo and with the emotional toll and then the physical issues after surgery there was no way I was going in. I'm very lucky that they will pay me for 6 months and then half pay for 6 months after that. Hugs to anyone who has to work - I really feel so lucky. Xx
B74
Member

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

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

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

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

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

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

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

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

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

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

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

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

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

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 Community Champion
Community Champion

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

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

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 Community Champion
Community Champion

Re: January 2019 chemo starters

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

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

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

Member

Re: January 2019 chemo starters

Helen, I just wanted to let you know that I was thinking about you and understand how you're feeling x I'm from the Oct '17 thread and finished chemo last March. I didn't think I'd be able to cope with having chemo, (I still sometimes think did I really go through that!) but it's doable. I didn't always feel great, tiredness mostly, but it was ok. If there's anything I can help you with please ask  xx