Getting ready to begin

Hi Debs
I mentioned it at my wig fitting and they can make them up from old sample wigs that have gone past their best. Ask at your nhs fitting tp see if they can make one or two up for you. If not they are on one of the website that does scarves, hats etc. one is .bohemia-fashions.co.uk/ so try that one. My thinking was if it’s an awful day but I need to nip to the shops no-one will think anything of me wearing a hat or scarf in sainsburys and as without my glasses there is zero chance of me drawing eyebrows on evenly a fringe will hide the fact that I won’t have any
Days 4-7 past first chemo I was very tired, cold and had very little colour so went to bed in the afternoon with the electric blanket on. It didn’t seem fair to the rest of the family to put the heating on.
Hope that helps,
Ali

Well done to Irene and Ali for getting through your first Chemo. Now you know what to expect it’s one worry out of the way.
I am due my FEC3 next Friday and have got away lightly (so far) with the side effects that many others describe on here. No sickness, nausea, constipation etc, just a metallic taste in my mouth for a few days during week two. It really is individual to us all and just go with it and deal with each day as it comes.
My hair started falling out two weeks after FEC1 and it really was a mess and a bother, so I got OH to shave it off! Again, it depends on your own emotions re hair loss, but it doeasn’t really bother me. I bought a couple of hats from hats4head.co.uk and a couple from H&M and I just pop them on when I go into Tesco or somewhere like that. I don’t bother around the house or if friends come to visit, but I have found that sometimes at night my head gets a bit cold and I got myself a little sleep cap (£3.99 from hats4heads)which does the trick perfectly. I pop it on during the day too if it gets a bit chilly.
I’ll admit to being a bit anxious to be having a Groshlong line fitted next week the day before Chemo - seems to be bothering me more than I was bothered about started Chemo. Think it’s because it’s something actually going into my body and staying there, and then there’s the stress of keeping it infection free for the next couple of months.
Hope you all are enjoying the Bank Holiday

Karen

hello all can i just say thankyou to everyone who posts comments, tips and help on this site it has made it easier for me to cope with having breast cancer. I,m due to start chemo in oct and am quite frightened about it, the drs told me that the cancer i had has been removed but the surrounding tissue is DCIS so i have to have six lots of chemo then a mastectomy early next year. The dr said if i dont have the chemo and the cancer came back it could be vascular evasive which they were concerned about so i havent got a choice but to go ahead with it. Am going to florida in three weeks time ,the dr said to go and have a good holiday then when i get back will start chemo straight away, so im going to have a great time with my husband and kids and then knuckle down for the treatment . Will let you know how i get on with the chemo and would be very greatful for any tips on coping with chemo. love to you all karen xxxx

Hi Karen
The only tip I’m going to give you for now is to go away on your holiday to Florida and have a wonderful time with your family.
We’ll all still be here when you return to help you through whatever is to come in October.
I really hope you have a great holiday.
Karen

Hi Karen
I had to cancel our holiday, as I was having surgery on the day we should have been going away. Cried all the way to theatre as all I could think was I should have been lying on a sunbed by the pool not lying on a bed going for surgery.
Everyone is different but as I am finding out chemo is not about being ill all the time. I’m on week 3 (2nd of six FEC due next tuesday) and managed to paint the bathroom ceiling yesterday and a few of the girls from work are coming round tomorrow evening for a chinese. I rest when I need to but make the most of any energy I have.
Hope you have a great holiday with your family
Ali.

Obviously everybodys experience of chemo is different and each cycle could be different too but so far I’ve been really lucky. Its 4 days since my first FEC and I haven’t had any side effects yet. I’ve made sure to keep my fluids up to flush out the toxins and had my daily bit of excercise with the dog and I feel fine. I’m a bit worried it might come back to bite me in the bum in the coming months but for now I’m thanking my lucky stars!
Good luck to everyone else just starting out
Debs
x

Well I have survived my first FEC yesterday. I had a bad time with sickness last night, despite taking the anti-sickness pills as instructed, consequently had a restless night and felt a bit queasy this morning. But on the more positive side, since taking this morning’s dose of pills I’ve felt much better and by lunchtime felt quite hungry and was able to eat normally. The steroids defintely seem to have given my system a boost. I was in two minds whether to try the cold cap, but thought I’d give it a go. However, as soon as the nurse put it on my head I told him to take it off again as it just felt like one more thing to have to cope with. No doubt I would have got used to it but being hooked up to the chemo machine seemed like enough! I’ve looked at the Suburban Turban website and think I will order from them. Also have an appointment later this week for a wig from the NHS.
I can’t claim to be an expert after just one session but to all of you are just beginning, I would say listen to your body and do what it’s telling you to do. I find going out for walks very helpful physically and psychologically but I know I need my times of rest as well. Can’t quite imagine painting the bathroom ceiling at the moment but you never know!
Wishing you all well,
Amanda

Well I have survived my first FEC yesterday. I had a bad time with sickness last night, despite taking the anti-sickness pills as instructed, consequently had a restless night and felt a bit queasy this morning. But on the more positive side, since taking this morning’s dose of pills I’ve felt much better and by lunchtime felt quite hungry and was able to eat normally. The steroids defintely seem to have given my system a boost. I was in two minds whether to try the cold cap, but thought I’d give it a go. However, as soon as the nurse put it on my head I told him to take it off again as it just felt like one more thing to have to cope with. No doubt I would have got used to it but being hooked up to the chemo machine seemed like enough! I’ve looked at the Suburban Turban website and think I will order from them. Also have an appointment later this week for a wig from the NHS.
I can’t claim to be an expert after just one session but to all of you are just beginning, I would say listen to your body and do what it’s telling you to do. I find going out for walks very helpful physically and psychologically but I know I need my times of rest as well. Can’t quite imagine painting the bathroom ceiling at the moment but you never know!
Wishing you all well,
Amanda

Oops, my message seems to have duplicated itself! Sorry about that.
A

Well done Amanda for getting the first one out of the way. I had bad sickness the first night as well but was fine next day and since. Not sure if it’s the same with your hospital but I had to phone in to the chemo unit if I had any sickness as they said there are lots of different anti-sickness drugs and they would try a different one next time. Ringing in gives them time to get a change of prescription ready to save hanging around waiting for pharmacy to deliver something else on the day.

Day 15 today, hair falling out (lots), good thing wig is arriving on Thursday.

Wishing well to all those having chemo this week
Ali.

Thanks Ali, good idea to contact the hospital unit, they did say there are other pills they can try. I think I could have done with taking the pills a bit quicker than I did as well. I’ve been OK since - a bit queasy here and there and tired but nothing to worry about and I have felt a bit more myself today. I got my wig this morning - deep burgundy! Thought I’d have a change from my everyday brown!
Amanda

Saw onc consultant today. Got prescription for omeprazole as had really bad ingdigestion from about day 10, worse than during pregnancy. Also have been given lorazepam to take day before next chemo for 3 days to combat sickness. He assures me that this combined with a different anti-emetic should stop the sickness I got first time round. Got my wig fitted and trimmed today and also had an aromatherapay session at the local cancer support center, wnderful!. Hair now falling out so much that I’m competing with the cats as to who’s blocking the hoover up with the most hair. It doesn’t hurt but this has been the thing that has upset me the most and I have cried as I know because of my age (47)and that I will be taking tamoxifen afterwards it’s unlikely my hair will grow back blonde and straight. Guess the household budget will have to allow for a monthly hair appointment for colour and straigten from next year. I have been told by bc nurse that the is a 50% chance it will grow back black, 50% it will be grey and 100% chance it will be curly, does anyone have any experience of what it grows back as?
Ali.

I used to have poker straight hair and after FEC and tax is really curly. Lets all hear it for GHD’s!

Good luck with the sickness.

Thanks Annie81.

I know what to put on my Xmas list now.

Hi everybody

Thanks for all the supportive comments about sickness before my 1st FEC. As it turned out, I was nauseous for about a week but wasn’t actually sick so the drugs did their work.

The actual process of drugs being administered was much less traumatic than I expected. One nurse gave me the drugs through a very small canula in my wrist while another nurse talked me through all the things I needed to know about chemo. They told me I would feel a slight buzz as one of the drugs went in: I felt like I’d been stung in the bottom and nearly jumped off the chair! We all fell about laughing!

Feeling weak and tired this week as blood count goes down but I’m ignoring the voice in my head that says lazy cow and I just rest more.

All the best to those about to start - the worrying beforehand was much worse than the experience for me. Hope its the same for you.
Lilac x

Hi Lilac
Glad the first one went ok. I’m 8 days past first FEC now and I haven’t had any side effects at all. I do suddenly have an enormous appetite though! Not good as I stopped going to Slimming World when I was diagnosed!
I found I got quite emotional when the treatment started. I don’t know if it was relief that it was finally starting or the sudden realisation that there is actually something wrong with me. The cyclophosphomide stung my nose not my bottom luckily. I have heard others say it stings in the nether regions!
I keep waiting for the next stage now, the hair loss. Doesn’t seem to be starting yet but I have hats and scarves at the ready (and the clippers!).
Keep in touch and we can compare notes!
Take care
Debs

Hi
Next fec due next week and in the last few days I have had runny eyes and nose. Has anyone else experienced this? It’s not a big problem more of a minor irritation, worse when I move from one place to another with a different temperature. Other than that feeling really good, just not looking forward to number 2 next tuesday.
Hair started falling out at day 15 but not yet bad enough (or brave enough) to cut the rest off yet.
Take care of yourselves
Ali.

Hi Debs and Ali

I’ve done the dirty deed myself and got my head shaved. Hadn’t been losing hair yet but wanted to get wig sorted before my daughter started back at school so I wouldn’t suddenly look different a week or 2 into term.

Shed a tear as my hairdresser gave me a no 0 but it did give me a sense of control (and will save me cleaning hair out of the shower). First day I did the school run, I was scared that everybody would be looking at me and wondering, but nobody noticed. I swear if anyone had said to me that they liked my new hairstyle, I would have cried. So different from when I get a real new hairstyle! Looking in the mirror, I can’t believe people are fooled by it, but they are. Phew!

Lilac x

Lilac thats so brave and I’m glad your wig looks good. I’m not sure about mine yet. Its hard to tell what it’ll be like once I don’t have hair underneath and my hairdresser has titivated it a bit but at the moment my son said it looks like a mullet! Thats the honesty of a 15 year old for you! lol Think I might just stick to the scarves!

Hi all
Got lots of talk about how things might taste different when on chemo, especially an increased liking for strong savoury stuff. My daughter was joking that i might go beyond the chicken korma at last! But for me I’ve found most things taste ok but slightly
dulled although I appreciate the textures more, can’t eat soggy cornflakes now, except for sweet stuff which tastes SO… good! Definetly a plus, red wine tastes the same and chocolate tastes better,
Ali.