August 2018 Chemo starters

[Georgie Gee]

Hi ktk, thanks for replying 

They want to do a port cath because I have very poor veins in my right hand and they cannot use my left arm because of the removal of all lymph nodes being risk of lymphedema.  

Have another medical condition needing frequent cannula insertions so they are very poor.  It took 3 nurses 3 attempts today.  

Waiting list is 3 weeks but they have only just put me on it.  I asked the oncologist weeks ago and she said to wait to see nurses.   I'm praying for a cancellation or something as I need to heal before next treatment apparently...  multitasker tell me how it goes after your port and chemo close together... best wishes 

Georgie x

[ktk]

Georgie, if they have problems finding a vein I am surprised they haven’t suggested a Picc line. This is a permanent port that goes in your arm. It is flushed once a week and then bloods taken before chemo and chemo delivered through it. No more needles.

Multitasker the portacath is more invasive than the Picc. Is there a reason they gave you a portacath? Kx

[Kip]

Hi SB fabulous about the cocktail shaker... Maybe wishful thinking?  You should have taken it along to chemo and got it out ... Would have been funny to see the nurses face!

You all seem to be getting along well, keepnup the drinking they thought maybe not the cocktails!

[Sunflower18]

Hi Multitasker,

yes i have also been to the wig shop in Ware. Really nice and the wigs look pretty good. I’ve reserved one and they are getting me another one form the warehouse as they only had the style in blonde.....which being a brunette looked rather silly on me! Hope fully I can pop back next week to pick it up as I am sure my hair will be falling out soon. First chemo on Monday just gone, feeling ok today but just a bit tired.

Good luck tomorrow

x

[SB1610]

Georgie gee - that's good to hear.

I had my first EC this morning. Attempted the cold cap but gave up after about 30 mins - it was cold, heavy and tight and it was starting to make me feel nauseous. Couldn't bear the thought of wearing it for another 2-3 hours for there only to be a possibility it might work and then have to go through the same the next 5 times. Hats off to the ladies that do cope with this - the nurse told me everyone has a different experience so please don't let my account put you off if you are considering it - my advice would be to try it and see.

SE wise - we got home about 2pm and I started to eat anything that wasn't nailed down, had a bit of a fuzzy head, started to feel a bit nasueous around 4:30 so laid on the sofa with eyes shut feeling sorry for myself. However I've hauled myself upstairs to brush teeth and wash face and I'm feeling better so not sure if the nausea was imagined.
I've been monitoring my drink intake since getting home - one large coffee and I'm on my 4th pint of water - just don't seem to be peeing enough out though I am peeing!! Oh what things I share with peeps I do know - it's quite cathartic though.

Keep smiling I guess xx

[Multitasker]

Thanks for your chemo bag ideas. Hopefully I am all set for tomorrow.

Had a great day yesterday. I went to an amazing wig shop in Ware with a lovely consultant called Amanda. The experience could not be more different to the shop I went to in London. Thank goodness I tried again. Thats not to say it might prove too much faff in reality but I’ve now orderd one that I am very happy with - in the other shop I just felt I looked my father in drag!!

Today though I feel like I’ve been hit by a truck. I had a portacath inserted this morning and my chest looks like I’ve been punched by a gorilla. Swollen and huge bruising. I cant believe they said I can have this a day before chemo! I don’t care about the discomfort, I’m more worried that they may delay chemo and want it to heal a bit first. It looks so raw. My husband lives in Switzerland and has flown over for 3 nights. He wont be able to be here next week. I guess I just have to wait until the nurse and doctor look at it tomorrow. Despite reading all the literature I didnt expect to feel and look like this. 

Has anyone else got a portacath? Did it look horrible after insertion? Did it take long to heal?

Fingers crossed for tomorrow

[Georgie Gee]

Just had my first FEC and so far feel fine...... had been t at 11.30 as it took them half an hour to find a vein..... 

is my body playing tricks with me or should I see this as the calm before the storm?....... 

thanks 

[JacqB]

Cocktails and chemo! Fab idea! 🍸 should be available on prescription 😊

[SB1610]

So I have my first chemo session this morning and as I'm going to give the cold cap a try I was getting a few things together last night to keep me comfortable. So a warm wrap, some ridiculously fluffy slippers socks, a few snacks, some puzzle books and the flask to make some hot chocolate. My partner washed the flask through as we haven't used it for a while. I've just come to make said hot chocolate and was looking at the flask thinking something wasn't quite right but wasn't sure what - I then realised it just had a pop on lid not a screw lid. Well that's a bit rubbish I thought - it could leak in the bag. How have we managed before with it in the rucksack?? I then realised it was the cocktail shaker.......

Happy days ladies - hope this made you smile xx

[Kip]

Hello August ladies, sorry you find yoursleves here and sorry to see some of you are suffering SEs of chemo.  I have had 3 Fec and will be having 3 T staring August 13th.  I have already had a mx and will be having nodes removed, rads and hormone tabs after that.  I've found the worst effects to be nausea bit like being pregnant in waves but I take the meds and they are bearable after that.  I've worn anti sickness bands, nibbled anything I fancied and tried to drink lots, important to flush it all through.  If you are taking steroids be prepared for an energy and emotional dip for a day or so after you finish them,, for me day 6\7 but it passes too.  Just take things easy listen to your body and you will get through.  As for hair loss, mine started shedding on day 12 and by 15 it was falling everywhere so had to brave the shave.  I won't lie it was tough but once its gone the relief was immense as the waiting and worrying about when will it go was worse.  I still have eyebrows and lashes at moment but e everywhere else is gone. .. everywhere as KTK said some of us have posted our baldies on the June thread.  

Take care ladies take one day at a time Kip xxxx

[JacqB]

@Multitasker
I bought a beautiful wig by Noriko after watching a demo on YouTube, the lady tried it on in five different colours. It really is lovely. When it arrived I panicked as it felt too small and was sort of riding up my head. But I was trying it with my own hair. Once I was bald it fit like a dream and is adjustable. According to google 94% if women take a standard wig cap. People who don’t know I’m sick just think I’ve got a new hairdo.
Hope you find a fab wig or, as others have done, embrace the bald!
Jacq xx

[ktk]

Re chemo bag, I take some snacks (ginger biscuits) and mags/book and music. I find mags better as I can’t concentrate on a book! My chemo ward let’s you make tea and has a wide variety. I also take someone to make me tea!!! Take a big bag as you will leave with a shed load of drugs! I think you will only be cold if you are cold capping.

Multitasker I am just short of 6’ myself. I knew that I would not wear a wig so didn’t bother to look. I do have some scarves but have embraced the baldness and find it very liberating. If you go to the June thread you can have a look! Kx

[Multitasker]

Morning girls

So sorry to hear about your SEs Jude and Sunflower. Sending you loads of hugs.

I am trying to drink loads of water in the run up to chemo. Feel like I’m pregnant getting up in the night for the loo. I’ve downloaded the Headspace app too. Lets see how annoyed I can get by punctualtion and voice 😂

Any top tips for my chemo bag? I’ve been told you can feel quite cold? Even in this heat?

Off to look at wigs today. Already tried one place in London last week, so depressing and demoralising but going to give it another go. I think the consultant  may have been shoving too small wigs on my enooorrrmous head. I’m six foot so hardly a small frame. Well thats what i am hoping bc they were so tight and just didnt sit right. Fingers crossed.

💆‍♀️

[JacqB]

Good morning ladies
I started chemo at the very end of May and just wanted to pop over and wish you all the very best for your treatments. It is very doable with more good days than bad. You’ve got this! 🥊🥊🥊
All best wishes
Jacq 😊

[Iamstillme]

A counsellor friend recommended the Headspace app so I downloaded it. Although it's set out well and I wouldn't have minded paying the small annual fee, I found the guy's punctuation really annoying and his voice grated on me. Needless to say, I wasn't relaxed at all. I wonder if there's a way of changing it. Or maybe I'll just try Insight Timer instead.
Sam xx

[Iamstillme]

Hi Sunflower, I'm glad that you felt a little better today and I hope it continues to ease.
Advice I got that has helped me is: Try to drink as much fluid as you can - I know that's easier said than done when you're feeling like crap - and listen to your body, sleep when you need to & eat little and often if you can. Obviously if you're working or have a young family or dependants that can be difficult so accept help from your support network if you have one.
I was surprised by some of the people who have become my support network and equally shocked by those who have distanced themselves from me. Maybe they'll reappear at some point but I'm not going to put my life on hold waiting for them to come to terms with my diagnosis. Life's too short.
Sorry, that kinda turned into a little bit of a rant.

[Iamstillme]

Hi Jude, so sorry that you are still suffering. I hope you find some anti-sickness meds that work for you. A blog is a great way of keeping track of your whole journey - I'm not tech-savvy enough to even attempt this right now especially with chemo brain - not only to show your chemo team but also so you can look back and say "wow, look how far I've come!"
When I reread my long post, I didn't realise how many SEs I'd actually had but I still feel lucky that it wasn't worse. They're much easier to deal with when it's one at a time.
Take care & I pray that you feel better soon. Gentle hugs, Sam xx

[Jencat]

I'm from Oct thread and finished chemo at the end of Feb. Just wondered if you'd tried wearing travel sickness bands whilst you're having chemo. (I kept wearing them for a few days after chemo as well) I don't know if they did make any difference and it might have been a coincidence, but I wasn't sick at all x

[Sunflower18]

Hi all,

I have just had my first chemo treatment yesterday 6 FEC T - I know I started in July but I am only 2days outside of the August start date!

i was very anxious about it all. Already had surgery Lumpectomy and  removal of all nodes -that seemed the easy part.

I hate to say it but last night I felt awful, so sick and threw up a number of times. Luckily this morning I took all of the sickness tablets I was prescribed (3different ones) and been better today, just nausea. Going to bed in a moment as I didn’t really sleep much last night!

I am sure this journey will be a hard and long haul but it is the only option we have so we need to take each day as it comes....well that is what I say on a positive day!

Good luck everyone x

[Jude1962]

Hi multitasker
Good luck with your first cycle, I’m struggling with nausea & vomiting but sleeping on & off a lot
It’s a horrible place where we all are but the support on here is great
Jude x

[Jude1962]

Hi Ianstillme
Thanks for the messsge, felt worse today vomiting this morning & very nauseous
If it continues tomorrow I might see if there are any other anti sickness tablets I can have instead
The fuzziness is strange, I also seem to have face ache! Think it must be in my sinuses
I’ve started doing a blog so will update my se’s in there so I’ve got a record to discuss with the team.
Good luck on your next cycle
Jude x

[Linda Corinne]

Insight Timer is a free meditation app that i use now as started with Headspace but decided not to pay for it.x

[ktk]

Hi Multitasker. Don’t worry about the port fitting. Is it a Picc? It is fine and makes the chemo much easier. They gave me a Limbo for the shower and you can get them on Amazon.

Good luck ladies. It is all doable and a means to an end. If you fancy having a look at us on the June thread some of us have posted our lovely bald heads. Kx

[Appletree]

I've found the Headspace 10 days free meditation course really helpful and have returned to it on many occasions. It helped me relax for the radiotherapy sessions on the patient unfriendly couch, and gets me relaxed during the night when I keep waking up in a panic. I also use the breathing exercises (shallow breathing centred on the chest) when people are saying the wrong things with good intentions and I'm conscious of having rather a short fuse!

[SB1610]

Morning All

I've been using a meditation app called Headspace - I'm finding the sessions useful - I find the guys voice quite soothing. The first 10 days are free - though I'd did do about 4 days with on the trot - but then you have to start paying for it. If it interested just Google headspace but do let me know if anyone is aware of any free alternatives.

Happy meditation all

Sue x

[Multitasker]

Morning Ladies, first post. 

I start chemo on Friday, 4 cycles of EC and 4 cycles of T to be followed by radiotherapy and endocrine therapy. Ive had a lumpectomey and partial node clearance 3 weeks ago for IDC grade 2.

Feeling v anxious, its awful signing consent forms to put such toxic drugs in your body, when otherwise feeling well. But it is a well trodden path and something that has to be got through.

Having a port fitted on Thursday and hoping to try the cold cap. Feeling a bit queasy about the port insertion but compared to surgery I guess its no big deal.

My husband lives and works in Switzerland. He’s over this weekend for the first chemo session but after that we need to work out when I am feeling worst and need the most support and juggle his visits to fit that. I’ve been following everyones SEs to see how they are finding it.

Sleeping really badly which has been quite exhausting. I need to knock this on the heads bc sleep is essential to recovery. Starting meditation and/or mindfullness - anyones tip gratefully received! Can’t quite belive this is happeneing. My life has turned on its head so quickly. So much information to process.

wishing you all the best

[Iamstillme]

Hi Jude,
I hope you feel better tomorrow. Maybe mention it to your chemo team as they may be able to change your anti-sickness meds.
My head felt like a Mexican wave was going on in my brain and I felt a little dizzy after my 1st EC. The chemo nurses said it was the C so maybe the fuzziness you're feeling could be the same kind of thing?
I keep a record of any SEs in a pocket diary just in case I need to report them to my chemo team (hence my in-depth and long-winded last post).

[Iamstillme]

Hello Sue & Georgie and welcome to the club no-one wants to join. My 2nd chemo is on Friday 3rd and so far the SEs have been minimal.
I have tnbc stage 3 with node involvement and I'm having neoadjuvant EC-T and my SEs to date are:
Days 6-10 mild headaches but no temp - took paracetamol to ease pain & keep temp down.
Days 8-13 taste buds went awol - eat anything but my fav foods little but often although my appetite was pretty much nonexistent.
Days 11-13 mouth ulcers (2) - used medijel (savers own brand similar to Iglu gel which was recommended by bcn) also gargled salt water so not sure which helped more.
Days 11-16 mild sore throat but no temp. Also had today briefly. Paracetamol eases a little.
Days 15, 16 & 18 mild diarrhoea but no temp - took Imodium which helped a lot (fingers crossed).
Rash at PICC line site noticed at dressing change on day 13 - chemo team thinks it may just be heat rash but put on an allergy-free dressing to see if that helps. Taking Clarityn which eases itching although it looks worse.
Hair loss approx 50% thinner but my hair is thick and I had a lot of it so people haven't noticed. Started appearing on pillow around day 14 and has got steadily worse. Saturday (day 16) it was shedding all day and now I can't move without being covered. It's like I'm competing with my friend's cats!
I can't quite bring myself to shave it off as it feels like I'll be admitting defeat. I know some people find it empowering or that they're taking some control back but I don't feel that. Maybe my feelings will change when it goes patchy. The worse thing is how sore my scalp is, it kinda feels like I'm being scalped (or how I'd imagine that feels like as obviously I've never actually been scalped!).
Anyway, good luck with your first chemo on Thursday and I hope your treatments are kind to you both.
Sam xx

[Jude1962]

Hi Sue & Georgie

Not the best place to be but good to have some company!
I’m having 3 cycles of EC, then 3 cycles of T along herceptin (which lasts a year) & bone meds for 3 years. No hormone treatment as ER-
Had my first EC today at 1pm. Felt ok during it but a bit fuzzy round the edges. Been feeling sick for the last couple of hours - had anti sickness tablet, got the sea bands on, had a bit of bread, ginger tea & took the steroids
Not sure whether I’ll feel better or worse in the morning!

Take care x

[SB1610]

Hello Georgie

I'm also starting chemo on the 2nd - 6 rounds of EC so whilst not in exactly the same boat I'm in the flotilla with you (sorry thats the last of my boating metaphors).

I'm also a little bit scared so hoping to find support and help support others as we embark on our journeys. My first surgery was early May followed by a cavity shave early June to make sure they had got all of the little blighters so I feel I've been hanging around a while too.

Sending you good luck and positive thoughts for Thursday.

Sue x

[Jill1998]

Good luck with your first chemo Georgie - I'm sure other ladies will be along soon to join you .

[Georgie Gee]

Hello, 

I am starting chemo on August 2nd, so this is where I will be chatting and chilling out during this roller coaster.  It took ages to get this far after surgery in early June.  Like many others I am having FEC T plus herceptin for a year and and bone meds for 3 years.  No hormone treatment for me as no involvement. 

A little bit scared spitless but keen to meet others in the same boat.  

Georgie x

[Jobey68]

Hi ladies , I've started a new thread for those of you who are about to start chemo and those who are mid way to hop over from July Xx