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?
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!!!
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
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
Well done Welsh J! We’re getting there.
I’m glad it was so much better for you than you thought.
Deb
x
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?
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 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
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
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
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
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 
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.
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
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 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!!): theguardian.com/society/2016/jun/03/how-to-get-through-chemotherapy-decca-aitkenhead-cancer-treatment
And this excerpt from the ‘Science of Fasting’ video: 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!!
Thank you for this B74, I will most definitely have a read! x
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
Hi I’m on day 5 after first chemo - did anyone else feel like a dead battery - no go in me at all :-(
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