Hi Welshj and all. I’m home now and it all went really well.
There was a bit of waiting around, mainly because they’re still playing catch up after Christmas. The administering of the drugs was very straightforward, with the nurse naming each one as she gave it and telling me what it was for. There were 4-5 of us in the room. The chairs were recliners and there were heated pads to put over us to keep us warm (that sounds a bit like we were all huddled up together - we weren’t!)
The cold capping was a bit troublesome, mostly because they didn’t have a cap in my size so I had to have slightly too small one. I had a pain in one temple to start off with so the nurse put a piece of gauze between the cap and my skin and the pain went straight away. After about 15-20 mins it was all numb so I couldn’t feel anything. It’s a bit heavy though. At one point I nipped out to the loo and could see in the mirror I didn’t look as daft as I felt!
So home now and I’m feeling fine though tired. I’ll see how it is when the drugs wear off, but they’ve sent me home with half a pharmacy to use if I need to
Hi Welshj and all. I tried to post, telling you how it went today but kept getting error messages (several posts might all appear at the same time).
It was better than I expected. The nurses were great, talking me through the drugs and what they were for, as they were being adminstered.
I need a bigger cold cap as they had to force it on my head (which won’t help the roots) but after the first 15 minutes I was numb so it was fine. Heavy though.
I’m home now, have had a good tea and am ready for bed.
I’ve also been feeling pretty nauseous & generally rotten, but also busy replying to messages from friends and family, and also just taking a break from the internet because I’m sick of thinking non-stop about cancer and chemo. DebsE - I’m having Taxol after AC and my Dr told me Taxol is much easier so hopefully you won’t have too bad a time of it. All the best everyone. xx
I am new to the site as of 2 minutes ago, and due to start treatment on Thursday. Feeling isolated and overwhelmed, and struggling with family reactions when I’ve not even started. Just wondered if I could join this thread in the hope I find company from people who get it.
Hello HelenBumbleBee, so sorry you find yourself in this nightmare but you have definately found the place to be… everyone on here gets exactly how this feels. Talk and read away, these lovely ladies are doing great with their first chemo sessions… you’ll be the same. Its so tough at the beginning but when you get into a pattern you’ll be fine. I finished my chemo at end of September 18 after having masectomy, I then had ANC clearance and 15 x radiotherapy finishing on 19th December. All went ok, never as bad as I thought, yes some grim days with the chemo and surgeries etc but always picked up and moved on and always always always came on here, asked questions, moaned, whinged and chatted to the ones who really get it.
Take care… let these lovely girls guide you along…
Hello HelenBumbleBee. It is all a bit overwhelming to start off with, isn’t it? But, don’t worry, you’ve found this lovely site now (I’m so glad I did).
As Kip says, we’re all just starting off so in the same place as you. We’ll just support each other every step of the way.
Well done for everyone who has been through their first chemo!
I haven’t had the best start to my chemo journey. Unfortunately I was violently sick from 3 to just after midnight on the first day and ended up back in the hospital to get checks done but all ok so it’s just a case of getting on with it until the side effects subside.
Steroids played havoc with my anxiety which I have anyway so I felt like I was tuned to the moon and could not sleep!
Felt very emotional, I am not really a crier but I have certainly cried over the last couple of days. I am guessing it’s a mixture of diagnosis, hormones, fear etc.
No appetite since chemo but I enjoyed some scrambled egg this morning.
Taste in mouth is yucky but heard mints are good for that.
Next stop, hair loss.
Sorry I have not sugar coated this up but it is just the way I reacted to it. Everyone has completely different reactions which I understand after speaking to friends had reading on here.
The nurses were amazing when I got the chemo and I had no issues with getting it at all. I guess I know what to expect the next time.
I am getting 3 x EC and then T.
Anyone got any experience of the T part? Is it just as gruelling?
I hope your are all doing well, sending my love and let’s get this done! Not long in the grand scheme of things!
Hi everyone I started my FEC-T today. All went well and the nurses were lovely ? I have just felt a little bit “spaced” out ? I managed to prepare the evening meal and enjoyed it - I just hope I keep it ? what a strange journey we’re on but from reading the comments from previous people I have great confidence that we can do it ? good luck everyone x
Thanks for the feedback everyone. I’ve still got a few days to wait and feel a bit upset about the lack of information from my chemo centre. I have an appointment the day before- is that when they’ll show me round etc ya think?
MaMa JuJu - that sounds truly awful, so sorry for you. I found it bad enough with ‘just’ nausea and no violent vomiting. I really hope they can find you better meds for next time.
The thing that’s really taken me by surprise are the psychological effects. I expected to feel sick, tired etc (though the ‘hangover’ and ‘flu’ analogies they used didn’t come close to the reality!). I didn’t realise I’d feel like my whole essence had been stripped away so nothing was left except a husk. For the first few days I couldn’t care about anything. Friends were trying to remind me that I’m doing it so I can live to see my kids grow up, and I felt too depressed to care. I’m only just beginning to feel more like myself again (mostly).
Yes next stop is hair loss! I know I have about another week, but like the rest of me, it no longer feels like itself. Very limp and lifeless. At the beginning of this journey I thought hair loss was the least of my worries, but as with everything the reality is often a bit more confronting!
B74 - you’re not being depressing at all. This is just a safe place to vent where we know that other people on here “get” us x
MMJJ - if the T is for Taxol, that’s what I’m on. I know I only had it yesterday but so far I’m surprised at the lack of side effects. I’ve taken my stomach lining tablet, and my anti-sickness ones, and haven’t felt bad at all (I know it could still hit me like a ton of bricks)
That’s so kind, thank you xx
I had my mastectomy in November, and have had my chemo workshop today, ahead of 6 months of chemo on Thursday and then 15 x radiotherapy sessions too, so similar.
To think my husband and I were planning to try for another baby 15 months ago, but this was the path I was destined to follow instead.
Surgery, pain, loss of a breast…none of it bothered me but Thursday terrifies me beyond words. I want to run away but there isn’t a place on earth that’s far enough.
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
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
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):smileywink:
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
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!!
