oncologist appointment this morning ....eeek x

[jackearls1000]

well today I see the oncologist ...I am absolutely terrified ....stupid I know after everything else ...(diagnosis and lumpectomy) ...the journey is definitely fuelled by the unknown ...lets hope I have great news today ....hope everyone is feeling well and positive today ...and if not ...please stay strong ..im trying to ...Lots of love to you all ..x

[Lainey66]

Hey there Jackearls1000

All the best today at Oncology, I have my fingers crossed here for you. Yes this journey is definitely fuelled by the unknown. Keep strong and think positively. Wishing you all the best always

Lainey66

[jackearls1000 in reply to Lainey66]

Hi Lainey ...I have to have Fec ...one every 3 weeks for 4 months ....I'm a bit devastated about it ...need to get my positive pants on ...how can I move on I feel I'm in a whirlwind x

[Lainey66 in reply to jackearls1000]

Ah no, well the only way to look at this and get your mind around it is to visualise the chemo going in as a tank blasting out what cells are left and sweeping them up and getting rid of the cancer cells. Now don't worry about how you move on, what you need to do now is sit back and say, right at this point, let the docs and team take over, let your body and mind relax and in doing so help towards your recovery. Chemo will likely knock the stuffing out of you. When you are tired you must rest, that is vital, on days where you feel more active then do something that you like, plan treats for yourself for days that you feel well. Sleep as much as you can because when you are sleeping your body is healing. It's a tough road but you have come this far and you can do this. Sending you positivity and big hugs. Stay strong 💪 you can do this.

Lainey66 💐💐

[jackearls1000 in reply to Lainey66]

Thankyou ...you make so much sense ....I keep reading this to stay calm ...my daughter has just asked for a sleep over for her birthday in November ...is this doable do you think? ..I will do this I know I will ....I have to so may as well go with the flow ...after all its not for ever x

[Lainey66 in reply to jackearls1000]

The best bet is to explain to your daughter that chemo may make you feel exhausted and that she can plan for one but to see how you manage the chemo before anything is set in stone. Should you not feel well enough, maybe strike a deal and agree to one once your chemo is over and plan something quieter whilst you are undergoing chemo. Also remember chemo lowers your immune system so anyone with a cough or cold could have you heading off to the hospital with either neutropenia or a bad reaction to a cold. Right now, you have to put you first. How are you feeling in yourself at the mo? Take care, Lainey xxx💐

[jackearls1000 in reply to Lainey66]

I'm coping ...but not sleeping too good ...I'm on amoxacillan at the mo for an infection I got from a smear test a couple of months ago .. .I have anxiety but trying to overcome this x

[Lainey66 in reply to jackearls1000]

You are bound to be anxious you are heading into the unknown but you have got this far, you will get through this. I'm sorry to hear about your infection. With chemo you will become very susceptible to viruses as your immune system becomes so low. Have you considered trying meditation. It's not something I originally thought would 'float my boat' so to speak, but it is absolutely amazing and the relaxation really helps me to sleep. Maybe consider it for yourself too? I have grown to love it 👍👍

[jackearls1000 in reply to Lainey66]

Thanks Lainey ....how do you do that ? meditation? I will try anything ...just to sleep x I have had this infection since I had a smear test ...I don't know what happened I just wasn't right since then ....the smear test was fine ...ive had two lots of meds for it ...and it hadn't cleared up ...its seems fine now but the tablets I'm on now are very strong and have knocked me for six ....not a great start eh? x

[Lainey66 in reply to jackearls1000]

I actually go to a meditation group in a Wednesday evening, however you can get an app full of relaxing meditations. You make sure to have quiet time for yourself and lie back and listen to the meditation and follow the instructions. It is very very relaxing and I fall into a deep and comfortable sleep.

[Hidden in reply to jackearls1000]

Well, sorry to see you have to have chemo, but it IS DOABLE. It isn't nice a lot of the time and I think you need to prepare to lose your hair. I had chemo for 6 months and worked all the way through, some days just part time, but for me it helped to think about something else. Don't be afraid to ask your oncology team for help, I had bad nausea but the 3rd type of pills knocked it on the head. There is something to combat every side effect. You get into a rhythm and some days are really awful but it passes. Try to get some fresh air every day even if you feel shattered - being outside is good for mood too. You can do it.

Ps if you are planning on scarves rather than a wig take a look at Anabandana.com prices are really good and the scarves are pretty.

[josiemarie in reply to jackearls1000]

I had 4xFEC and 4 Tax... found the FEC much easier and with the aid of the cold cap didnt lose my long hair. The lot came out after the first Tax!

Sending love and luck ... Josie x

[jackearls1000 in reply to josiemarie]

Awww thank you for that Josie ...I'm just trying to put in a protection plan in place ....protect every avenue of my well being ....my biggest problem at the mo ...I haven't even started fec yet as waiting for date ...is staying asleep ...I'm going to try the cold cap ..I'm determined to do it ...and I'm seeing a wig specialist on Tuesday with my hairdresser I think if I can match my hair ..maybe no one will tell, (I'm just trying to figure out what to do with eyebrows) ...I have thick hair so hopefully if I do it all right ...I might keep enough hair to cope ...its just really trying to get your mind around it ..and being determined to live your life the best you can around it ...this is the frame of mind I'm trying to get in ..any tips greatly received ...thanks again for your message ...it really helps x

[josiemarie in reply to jackearls1000]

Imy hair was very thick waist length so l cut it to mid back. It looked very passable until after my first Tax when the lit came out in a couple of days.. with luck you'll hold on to yours with the aid of the cold cap. Because my hairs so thick and course a cheap wig l bought on ebay passed as my own and l kept working as an electricians mate for my partner throughout... just plonked a beanie on top of the wig and l was me again.

Josie x

[jackearls1000 in reply to josiemarie]

This is so encouraging thankyou...how did you feel after your infusion did you feel okish? X

[josiemarie in reply to jackearls1000]

After the first fec l had the mother of all hangovers but awoke next morning feeling fine and breezed through the the next three. Felt increasinglytired on the taxil but managed to work taking two days off with each dose until the last one when all l wanted to do is crawl under the duvet and stay there for a week.

My hair came bk very quickly and within three yrs was back to my waist and just as thick

Josie x

[jackearls1000 in reply to josiemarie]

so you reckon 6 cycles of fec is doable and to be able to do housework, cook ect ? x

[josiemarie in reply to jackearls1000]

Well l hadnt a problem except the night after my first one. I only had 4 Fec.. then the Tax which I did feel more and more tired on. I just carried on as normal and certainly didnt have a problem going out wkends to the pub... only my close family knew l was on chemo (was my way of coping!) but did need a break fm work afterwards.. took about a month to get all my strength back. By far the worst bit of chemo was losing my hair..

[jackearls1000 in reply to josiemarie]

How did you cope with that? I'm also worried about hair .I'm trying the paxman cooling cap and going to look at wigs Tuesday...it's all so worrying trying to get my mind round it all ...and I'm still waiting for a date ...did you have to wait long for a date? And do they give you future dates?

[josiemarie in reply to jackearls1000]

Waiting for a date for the chemo?... l had mine 2wks after my lumpectomy. Then 6 wks radio 3wks after the last chemo. They didnt waste any time once treatment started

Josie x

[Jennymary]

Good luck x

[carolinenailsea]

I hope the morning went well and you are feeling more in control. Good luck with the next phase. xx Caroline

[jackearls1000 in reply to carolinenailsea]

I have to have FEC one every 3 weeks for 4 months ...so that's 6 ...I don't feel in control at all ...I'm trying to though ...xxx

[jackearls1000]

well its not great ..I have to have FEC ,,,,6 cycles in 4 months ..I'm so upset ...has anyone else had this treatment? and how did you get on x

[lynnedpope66 in reply to jackearls1000]

Hi, I had 6 cycles of fec and finished my last one on July 5th this year. I was dreading it but it wasn't too bad. I also used the cold cap too. I had relatively few side effects, a little bit tired, a bit fuzzy headed for a few days and a funny taste in my mouth but no sickness so it was manageable. Also some constipation but that was about half way through. Just remember after each session that is one less to have to do and once u have done 3 u r halfway. If u have any questions just ask. I remember when I started in march, July seemed an age away and I never thought I would get there! But I did and have just returned to work part time. Just remember u can do it! Lots of love. Lynne. Xx

[jackearls1000 in reply to lynnedpope66]

Lynne id really love to speak to you ..would you take a phone call ?? xxx

[lynnedpope66 in reply to jackearls1000]

Hi yes I'd be happy for u to call me, perhaps we can arrange s time and I'll give h my number. Take care. Speak soon. Xxx

[lynnedpope66 in reply to jackearls1000]

Also, did u have the oncotype test and if so what was your score? Lynne. Xx

[jackearls1000]

Thank you ...lynnedpope66 that's reassuring ....I didn't have the oncotype test ...how did you do with the cold cap?xxx

[lynnedpope66 in reply to jackearls1000]

It was ok, u soon get used to it, I prob lost about 50 % of my hair at the most, and it thinned all over with a bit of a patch on the top but it started growing back before my treatment had finished so def worth a try. I have got a wig which I wore as I couldn't blow dry my hair or wash it more than twice a week so it was in a bit of a bad state but I have been and had it cut today and even came home without my wig on so it's def improving! Xx

[jackearls1000]

Do you have thick hair? ..mine is very thick and my hairdresser said if I lost 75 % I would still be ok ....I only wash my hair once a week anyway as it is so thick ...I'm going to see a wig specialist on Tuesday ....did you feel ok after the day of treatment? ...thanks for this ...it is reassuring x

[lynnedpope66 in reply to jackearls1000]

My hair was fairly thick and I think I lost about 50% at the most. Yes I usually felt ok the next day, I was having my treatment on a weds so side effects sometimes came on after a couple of days as it gets into your system, but by the following weds would be ok again. They were only mild and didn't stop me doing anything. I'm quite happy for u to phone me if u want to. Good luck, let me know how it goes. Do u know when u start? Xx

[jackearls1000 in reply to lynnedpope66]

Do you want my number or shall I have yours? I'm bit better today than I was yesterday..didn't sleep to well last night xxx

[jackearls1000 in reply to lynnedpope66]

yes I would like to talk to you.....how shall we do this ? number wise x.....I'm having trouble staying asleep x

[lynnedpope66 in reply to jackearls1000]

Hi, I will be around most of the day today, my no. Is 01905 840017 if u want to ring me. Hope u r feeling a bit better. Lynne. Xx

[jackearls1000 in reply to lynnedpope66]

Thankyou so much for the call today ...the more I hear such positive stuff in feeling stronger and feel more prepared to face this ...it is a short term thing to endure ...well done for getting through it ...it does admire your strength ....thanks again ...please stay in touch ...it might sleep with a bit more ease tonight ...lots of love and light to you Jane x

[jackearls1000 in reply to lynnedpope66]

Hi Lynnepope66 ....got my date through today ...PANIC!!! Bloods being done wed morning first cycle Thursday ....I'm gutted I have a sw ball to go to on Friday ....not sure weather to go or not|? ....I'm dreading it and feel scared again x

[lynnedpope66 in reply to jackearls1000]

Hi Jane, don't panic, u will be fine! At least I haven't got to wait very long. When u go for your pre chemo check with the nurse don't let that scare h either as they have to tell u every possible side effect when u will prob only get a few. Just try and remember the sooner h start the sooner u finish! About the ball I would wait and see how u feel on the Friday then decide. I will speak to u next week. 😊. Xx

[jackearls1000 in reply to lynnedpope66]

Lynn ...did you have to self administer steroid injections ? someone has just sent me their table and they have 7 steroid injections > to do after treatment ....x

[lynnedpope66 in reply to jackearls1000]

Hi Jane, no I didn't have injections but I know people who had fec the same as me who did have them. I'm not sure what the difference is or why some people have them and some don't. U may not need them. Try not to worry too much, they will go through everything with u. Speak to u in the week. Xx

[Hidden]

Hi jackearls

I had 6 rounds of FEC in 2015, the fear of having it definitely is worse than the chemo itself. It really isn't like you see on TV, I only felt a bit fuzzy at times, scalded tongue sensation and fatigued. Yes my hair fell out, didn't do cold cap, and at 34 with long dark hair this was hard to take but kept telling myself was a small price to pay. Just take each day as it comes, and have family and friends on hand to help. I wish you well and just post on here if you need/want to know any more, there's always someone on here who has been there.

[jackearls1000 in reply to Hidden]

Thanks for that cazlav ..this is all positive stuff ...I just need to not panic I think ...and arm myself with as much information on how to get through this ..I know ill be ok ...I think x

[Nixh]

Hi Jackearls,

I had 6 rounds of fec 100 (Sept 15-Jan16 ). I cold capped successfully (kept about 50-60% of hair just had thin patches) They like to throw everything at us which is why I ended up having chemo and radio. Try not to get too stressed (I know easier said than done), fec is the easiest of the 2 kinds (docetaxel being the harsh one). Ask for all the meds, I had Emend anti sickness as well as the usual steroids and anti sickness..

The worst bit for me was the cold cap ironically but couldn't complain as was my choice (I did for my then 10 year old son as he was devastated i'd lose my hair). If you cold cap remember it does make chemo day much longer... fec 100 meant i had the cap on for 4 plus hours. Still can't look at an ice cube or lolly without feeling nauseous or cold... I'm glad I kept going with it, Paxman Coolers, the cold cap company are fab and very helpful. If you have any questions email them and they usually ring back...

Fec overall makes you feel drunk some of the time, like you have a hangover (without the fun drinking bit), metal tasting mouth, mouth thrush, very tired, constipated!! but it is manageable. I did the school run every day, pulled a wooly hat on and walked, I think it actually helped. Christmas day I had the best glass of prosecco EVER! coz by then there was only one more..

Keep asking questions, the Macmillan community thread was helpful for me as they have a monthly 'starting chemo' thread so you can chat to people starting the same time as you who will have similar experiences.

Yep the key is to not panic,

big hugs,

Nix x

[jackearls1000 in reply to Nixh]

What's the difference between fec and fec 100 and fec 75? X

[Nixh in reply to jackearls1000]

I think It’s based on surface area 😂.. am 5 ft 9 and not thin, plus also how healthy you are. . It will mean that you will have cold cap on for less time so a silver lining X

[jackearls1000 in reply to Nixh]

How do you get on the monthly thread ? I'm not staying asleep ..I keep waking up at this ungodly hour ...chemo is the first thing I think about when I wake up so I cant get back to sleep ....x

[Nixh in reply to jackearls1000]

Sorry sometimes can’t get my head around how these threads work so didn’t see your replied.

I joined the Macmillan breast cancer forum and within that they have lots of threads - one is the monthly chemo starting one (see link below, might not work as may need to sign up and in first)

community.macmillan.org.uk/...

Good luck on Thursday, hope all goes ok for you x

[gerry234]

Hi first post on here! I had FEC 75 and what I worked out is that FEC 100 dose is based on surface area which is calculated from height and weight and then FEC 75 is 75% Of that. In my case I was marginal whether I needed chemo hence the lower dose. My hair is fine but the cold cap worked for me and I only thinned a bit on top. Worst effect for me was the E part, epirubicin, making my veins hurt and I wish I'd had a PICC line earlier. We're all different though so that's not guaranteed to happen! I'm now 5 months out the other side of chemo and the memory and effects do fade, but during treatment I had to take 1 day at a time till it was done. It's doable as others have said.

My first annual mammogram was today so fingers crossed its ok! But my sister had her first chemo today and I do hope I can say and do the right things to support her as others did me. All the best to you. X

[jackearls1000 in reply to gerry234]

Hi Hope your Mammogram went ok ..thanks for your imput ...I'm still waiting for a date ...its making me a bit restless ...hey ho one day at a time x

[jackearls1000]

Thanks for that ,,,so whats just FEC? Sorry for being dim ..I'm not sleeping good at the mo ...and I'm not thinking straight ...x

[gerry234]

FEC 100 is the standard dose (100%) so just FEC might mean that.... But the only way to know is ask your consultant. I can understand you're not thinking straight as uncertainty and fear of the Unknown is the worst thing... But once you start that all goes and you have the certainty of the treatment and all the appointments and care that go with it . To me, 18 weeks seemed such a long time to think about, but the end did come of course and the day the chemo nurse pulled out my PICC line (I didn't dare look but honestly didn't feel a thing) was a very happy one! Best way is not to think about the whole course but break it down into little achievable chunks. And think about the chemo doing its job!, You will definitely be able to get through and be glad afterwards that you did it. Hugs xx

[Debs1962]

Hope you don't mind me asking jackearls1000 did they explain why you are having chemo? You had lumpectomy didn't you? Were your nodes afffected then? What cancer type have you got ER+ ?

Wish you well and you will get through this stay positive xx

[jackearls1000 in reply to Debs1962]

Hiya ...no its a " mop up " to catch any rouge cells they cant see under microscope ....he left it as my decision but the argument left me with no choice ...I had a lumpectomy with clear margins and nodes ...but I'm not hormone receptive ...its just 6 cycles for 4 months ..so seemed sensible to do it ...I then have to have radiotherapy ....I wen to see the wig lady today ..( my free will as I'm still waiting for a start date ) ..and she said my hair is so thick that with the cold cap I should just thin ....its all so scary at the mo ...but the positive stories that I'm reading are helping me through ....at least this be should go quite quick ....I just hate being incapable ...xxxx

[Debs1962 in reply to jackearls1000]

Oh I see now, you caught it early which was good, you will cope I am sure, loads of advice and support on here.

Xx

[jackearls1000]

Thanks for that ..I just worry about being sickly and incapable ...I'm very active ..and don't like not doing anything and being stuck in the house ...I will go barmy x