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November 2016 Starters

Sarah73
Member

Re: November 2016 Starters

Hi JoJo Hows it gone today? Hope you feel ok. xx

capelmum52
Member

Re: November 2016 Starters

Well done Jojo. I start tomorrow so your words today have help to allay my jitters about getting started.
Thank you to Sue for your message, I will probably buy a baby bag to use to house all of the chemo survival kit. Also very relived to hear that j Nat not have to do injections 😬
Tomorrow I have the dentists first think, just a final check up, then breast imaging for an ultrasound and to let them drain off more if the fluid build up and then off to chemo part one. I have worked the last 2 days and so far getting positive feed back / support from work and Occ. Health so feeling quite positive about it all. I hope the rest of you are doing Ok. Love and hugs to all.

Fiona x
blueash
Community Champion

Re: November 2016 Starters

Angipangie, if you look at page 3 you will see a photo of my hair after chemo. It is dry and shabby and it did thin but I don't need a wig. I just look like I need a trip to the hairdresser, but nothing will sort it out except time and a decent diet. I have treated myself to Boots vitamins for hair, skin and nails.

OldDawn63
Member

Re: November 2016 Starters

Hi Jjmabbatt - I'm from the September Starters and have already completed my 3 FEC cycles and had my first T (Docetaxel) and Herceptin cycle last week. The answer to you question about steroids is generally yes they do tend to make you hungry but it depends! When you have FEC they give you a short course of steroids to take for 3 days after the treatment to help you deal with the nausea, as well as other anti-sickness medication. However, I ended up taking steroids for the whole of my first FEC cycle because of complications (that I won't go into), and on that occasion they made me constantly hungry once the nausea had worn off, as well as hyperactive. When you have T (Docetaxel) they give you higher doses of steroids to take the day before the treatment, on the day, and the day after, to help you cope with the side effects. When I took them with my first T treatment last week, I can't say I was any hungrier than usual, but I was at least able to eat normally while I was taking them and for a couple of days afterwards. But the effect didn't last, and my appetite has definitely changed, to the extent that I am struggling to find things I want to eat and drink. So with the T the effect on me was to maintain my appetite for a bit longer, rather than to make me ravenously hungry. But everybody reacts differently, so they may not have exactly the same effect on you. I hope this helps.
JoJo45
Member

Re: November 2016 Starters

No 1 done 😀

Picc line went in easily, which was nice as wasn't looking forward to that.  Just got to watch the dressings as I seem to be allergic to most 😳 

Pumped full of anti sickness, steroids and antihistamines then on to the hard stuff.  Wasn't too bad at all, just had the hot flush and nasal thing going on with the C but apparently that's very common.  

Home now with my bundle of meds, and get to inject myself tomorrow to stimulate blood cells.  

Obviously the chocolate is the most important thing to remember 😆

IMG_1698.JPG

Angiepangie104
Member

Re: November 2016 Starters

Hi I'm starting my chemotherapy on Thursday going to try the cold cap did it work for you I see you said you tried it xx
Sue H-S
Community Champion

Re: November 2016 Starters

Hi capelmum52

Great to read that you are preparing so well and that you have had the courage to go for a Pixie cut. It may not only help you when the time comes, when your follicles go to sleep, but also, when the time arrives for your hair to regrow.

Chemo Caddy - the information you read was put together from many posts and tips over the years. There is no actual caddy - it is a bag/container or similar, where all things are kept together. Please also note, that you may not need everything, which is on the list. Much will depend on the side effects that you personally may be experiencing.

As to the injections - some have Gcsf injections prescribed, which generally tend to be self administered. This is not always routinely done, as they are quite expensive. Usually they are given to people, who are going through chemo and have circumstances or underlying challenges, which put them at higher risk of infections. 

QUOTE -  Granulocyte-colony stimulating factor (G-CSF or GCSF), also known as colony-stimulating factor 3 (CSF 3), is a glycoprotein that stimulates the bone marrow to produce granulocytes and stem cells and release them into the bloodstream. - END QUOTE

Hope the info helps.

Hugs

Sue xx 

 

capelmum52
Member

Re: November 2016 Starters

Good evening all,
So many posts in such a short time, it's both sad and heartening to have so many of you going through the same thing. I have been shopping for the contents of the caddy but was a it confused by what the actual caddy was? It sounded like a garden trug ? Surely I have got that wrong ? If anyone knows what it should look like can you please post a picture for me ?
Dentist now booked for Mirnjng before chemo, crude and naughty my was through work today, only one more day at work but very busy, which is keeping my mind off of it all.

Several of you have mentioned about having to inject yourselves, what is that but about as no one at the hospital has mentioned it ? Or more truthfully I may have just zoned out when they did, as the shock set in.
I now have a very short pixie cut, so that when the hair does go it will feel Less traumatic.
Jojo, yes definitely up for being your chemo buddy,
Thank you all so much for your kind words and making me laugh and cry, I know that with you all by my side this journey will not seem so bad.
Need to get some sleep now so as j can get up for work, will catch up with you all properly tomorrow.
Love Fiona x
Jjmabbatt
Member

Re: November 2016 Starters

Hi everyone,

 

Just wanted to sneak in on the November starters, just had my 2nd lot of FEC, like most I had been totally dreading the whole chemotherapy treatment, and was frankly petrified, however having completed session 2, it wasn't half as scary as I thought. Worst thing was the tiredness, it's like being knocked out, but then it passes, it comes again but obey your body and sleep if you can. As a committed tea drinker since my first lot of chemo the smell of tea, makes me gag, so am staying on ice and water for the foreseeable time, which I know is good for the veins. I know everyone is different but when my hair started to shed I decided to get the hairdresser to shave it off, and I felt more in control, it saved my husband having to follow me around with the Dyson too. I feel that I have become very obsessed with food, and when I am on the steroids all I want to do is eat. Has anyone else had food cravings?

 

The BCC forum is an absolute god send, when I have a bit of a wobble or need some straight talking advice this is the place I turn to.  Reading everybody's threads, sharing fears, concerns and some funny things makes me realise we are not alone, and I am so grateful.

 

 

 

 

 

 

Skye
Member

Re: November 2016 Starters

Hi Riversidedawn

 

Thank you for taking the time to come on here and offer your advice - on behalf of everyone else and myself, it really does mean a lot.

 

As you say, it's a journey that we all have to take, hopefully, we can all support each other through the tough bits, and maybe have a wee laugh about the funny bits!

 

I'm dreading losing my hair, but it's one step closer to being cured.  I must say I'm not looking forward to being bald but at least I'll save on shampoo and conditioner!

 

Thanks once again.

 

 

Skye xxx

Seagull1
Member

Re: November 2016 Starters

My blog has definitely helped me & loads of family & friends are following & have shared it so more people are aware of what to look out for & show it's not just older ladies that get it.
JoJo45
Member

Re: November 2016 Starters

Love your cancer blog, I have been doing similar through friends. Would like to do one to raise awareness to other women at the importance of checking yourself and being checked, as like you I'm only in my 40's and would not have been checked yet.
Nicnak1
Member

Re: November 2016 Starters

Thank you so much. It means so much that to me. Just having a shaky do again but it will pass hopefully. X
Skye
Member

Re: November 2016 Starters

Hi Nicnak1

 

There's no need to apologise for how you're feeling - or even losing it.  I think we've all felt like that, and still do, because we get caught up in what may (or may not) happen.

 

I've just had my first Chemo on 31/10/16 - so a week ago today.  Yesterday I felt like pants - no energy, very tired, feeling sorry for myself and trying to put on a brave face.  Today - I'm at my work, feeling good, no headache or any other SE's.  Tomorrow might be different, so I'm just going to take one day at a time. Sometimes, even 1 hour can change things so much for the better.

 

Be kind to yourself, it's a big shock finding out you have BC and it's a journey that no-one else can take for you.  Every day you will go stronger I promise.  If you're upset or panicky, just come on here, there will always be someone who can help.

 

Big hugs pets.

 

 

 

Skye xxx

blueash
Community Champion

Re: November 2016 Starters

Nicnak, it is perfectly normal to feel that way. My chemo is over now and before you know yours will be too. I just pop into newer threads to see if I can help or reassure anyone. Come here often and get help and support and then when you are able to it will be your turn to give help and support to those that come after. That's how the forum works and it is a wonderful place.

 

You will soon learn to manage your side effects, not eveyone has the same so that's why there is not much info when you first start! No point telling everyone about things they might not get when they are scared witless anyway. My worse side effect was the fatigue and feeling weak for days at  time. 

 

 

Nicnak1
Member

Re: November 2016 Starters

Thank you, all your replies really make a difference. Xxx
Auntyjulie
Member

Re: November 2016 Starters

Hi Nicnac, it does get easier, I found from day 7/8 appetite came back slowly, food tasted better. It's all scary if we allow it to be. We can all beat this bitch! Love and hugs (I don't normally swear but sometimes the occasion calls for it lol xxx
Nicnak1
Member

Re: November 2016 Starters

Hi Seagull1 and Sue. Thank you so so much for your replies. As you could probably tell from all the spelling mistakes I was mid panic, sorry. I have forced myself to get up and managed rice crispies and a tiny bit of banana in the hope it will help things. My husband is off today as I was in a real state yesterday so I really need to get my act together for when he goes back to work tomorrow. This is all so rubbish and I feel a wimp when I know so many women have gone through this and I am struggling so much already. Thank you again, I thought I was losing it this morning! Xxxxx

Sue C
Community Champion

Re: November 2016 Starters

Hi Nicnak

I'm so sorry that you are feeling this way. I'd just like to say that days 4 and 5 are probably the worst, so hang on in there because tomorrow you feel start to feel better. And by day 8 you will hopefully feel back to your normal self. Right now you will find that hard to believe, I know. 

Like the other lady said, it is a good idea to keep a diary, then as you go through each cycle, you will know how you feel on each day.

Take it easy, try not to fight it,give yourself time to recover, and take any offers of help.

Sending a hug x

Seagull1
Member

Re: November 2016 Starters

HI Nicnak1

So sorry you're feeling so anxious. It's not surprising. It is all really scary. I've been anxious at times & it gives me the runs too. Are your husband & family & friends being supportive? They can be a huge help but I've actually found speaking to others that have been or are going through it really helpful. They understand! I've been to a local support group too which was really good. One of the ladies there had a terrible time during her chemo & had counselling organised via her MacMillan nurse, which she said was amazing. Might be worth asking your nurse if you have one or call Macmillan or Breast Cancer Care. There seems to be loads of help out there if you need it. I've found writing a blog really good for me. I'm day 13 & have definitely felt I'm getting better each day. Even made it up the town & watched my son play football yesterday which was great. Try & keep positive. I know it's hard. We will beat this bastard and we're all here to help. xxxxx

Nicnak1
Member

Re: November 2016 Starters

New starter 2nd nov 2016. Really struggling on day 5 now. Struggling to eat, having panic attacks and uncontrollable shaking when panic. Been up alot ever since. Ivam so ao aorry to moan but feel so anxious. Feel l can't do it. Please please help. I have runs now but finding it hard to be positive. I am 44 with a wonderful husband and daughtee and friend. Any advice would be so helpful. Really panicky. Xxxxx
Auntyjulie
Member

Re: November 2016 Starters

Thanks skye. My appetite came back slowly from day 7. Never fancying much really but trying to eat when I do. Little and often is better for me than big meals. Still waiting for x ray so goodness knows what time I'll get to sleep. Then woken every 4 hours for blood pressure, oh the joys lol
Skye
Member

Re: November 2016 Starters

Hi Auntyjulie

 

Sorry to hear that you're in hospital - hope you're feeling better soon.  You did the right thing, don't take risks.  Glad you enjoyed the Chinese - my appetite seems to have disappeared.  I'm finding it difficult to choose a meal. Although it's doing wonders for my weight loss lol.

 

Hope you get out tomorrow.

 

Big hugs

 

 

Skye xx

Auntyjulie
Member

Re: November 2016 Starters

Hi girls, well day 9 and km admitted to hospital, got an ear infection. All OK but iv antibiotics and a night in. Hopefully home tomorrow, I've never stayed in hospital before. Got me own room at least! I've been meaning to post stuff before now but been feel much better the last few days even had a Chinese takeaway last night, and enjoyed it too. Food is starting to taste much better - yey!
blueash
Community Champion

Re: November 2016 Starters

Kelly just a few tips on what I did when getting the cold cap:

 

Wash hair only once a week, I did not buy and special shampoo just carried on using one for coloured hair which I had lots of.

 

Use tepid water and never go under a shower, I just used a plastic jug, filled it with tepid water and poured it over my hair.

 

Do not scrub or rub hard, just very gentle massage then rinse.

 

Use conditioner and comb with a wide tooth comb while conditioner is on. Then rinse.

 

Blot hair with a towel - no rubbing.

 

I did use a hair dryer on a cold setting.

 

No mousse, no heat, no colouring.

 

Before you get to the hospital take a pain killer to take the bite out of it!

riversidedawn
Member

Re: November 2016 Starters

Hi ladies, I'm from November 2014 group and will pop in from time to time to see how you're getting.

I had 2 tumours, 7.5cm and 2cm plus 26 lymph nodes affected! I had a mastectomy with implant reconstruction. 3 x FEC and 12 weekly paclitaxol with a portacath and cold capped throughout!

I worked reduced hours from home until march 15 when I was mad redundant.

I was 47 when diagnosed with kids aged 9 and 12. My daughter moved to s new school on day I was told about the diagnosis.

I'm here to support you however I can. It's a tough journey you are on, but you'll get through it (you have to, what else can you do?) but you'll find it much easier with each other's support.

You're in my thoughts everyday as my own experience repeats itself in my head, feel free to ask any questions I might be able to answer. Remember that this is a safe place for you to air you views, rant and moan, and share your experiences (good and bad).

Xx
riversidedawn
Member

Re: November 2016 Starters

Hi ladies, I'm from November 2014 group and will pop in from time to time to see how you're getting.

I had 2 tumours, 7.5cm and 2cm plus 26 lymph nodes affected! I had a mastectomy with implant reconstruction. 3 x FEC and 12 weekly paclitaxol with a portacath and cold capped throughout!

I worked reduced hours from home until march 15 when I was mad redundant.

I was 47 when diagnosed with kids aged 9 and 12. My daughter moved to s new school on day I was told about the diagnosis.

I'm here to support you however I can. It's a tough journey you are on, but you'll get through it (you have to, what else can you do?) but you'll find it much easier with each other's support.

You're in my thoughts everyday as my own experience repeats itself in my head, feel free to ask any questions I might be able to answer. Remember that this is a safe place for you to air you views, rant and moan, and share your experiences (good and bad).

Xx
Kelly
Member

Re: November 2016 Starters

Hi blueash

wow that looks pretty good to me 😊. I'm trying the coldcap I'll be pleased if I get the same results as you! I've bought a wig just in case, so I can mix it up xx

Kelly
Member

Re: November 2016 Starters

Hi Fiona and everyone

My story is a bit of a long one! After having a lump since 2008 and biopsed twice 2008 and 2014 both times fibrostic change I felt about July time that something had changed. Third time "unlucky" have grade 3 invasive ducal er+/pr+ her2 neg 26mm cancer. 4 nodes taken 3 clear but 1 with micro metastasis! I'm 46 with 2 kids 16 and 15. Married for 23 years to a wonderful man who over the past couple of weeks I've discovered is a good cook 😂!

2 days ago I was lying in bed post 1st round chemo feeling like I'd been trampled by an elephant. Today I've got up put on my makeup, contact lenses in and been out for breakfast, walked the dog, been shopping for a few hours and been round my brothers for dinner!!! What a difference 2 days makes - I feel back to normal again!

So please be reassured that although there might be times when you feel rubbish - it does get better and there will be good times.

I found eating things like jelly and yoghurt really helped, and really keep up with the good mouth hygiene.

WE CAN DO THIS!!

Kelly
Xxx
Seagull1
Member

Re: November 2016 Starters

Hi Fiona

 

sorry to hear about your shock diagnosis. At least you know it's all being sorted now though. Initially when I saw the GP & the Breast Specialist they were pretty sure it was just a cyst & as I had a benign lump 20 years ago I was pretty sure too. Was a shock when I was told it was cancer after the biopsy results & then another shock when they found another lump directly beneath the first after my MRI! Hopefully we're done with nasty surprises. 

 

I was was really cross at first too. How dare this interrupt my busy life? I'm 43 with 2 boys age 13 & 11 & we were going skiing in Feb 17 but we've had to cancel now. It really does get on your tits. Literally!  But I'm so determined to beat it. There's no way my boys are growing up without me. 

 

Hopefully Tuesday you'll find out more about work. Most companies do have policies for this sort of thing. I work for the NHS & we get 6 months full pay & 6 half. Funnily enough I speak to occ health Tuesday too!

 

My chemo mix is quite different to most people's so my SE's will probably be a bit different anyway. My oncologist said to me that everyone's cancer journey is different, like childbirth - no 2 are the same. Certainly sounds true from everyone I've spoken to who's had it. 

 

Ive been pretty strong so far but have had my down and tearful moments too. I've actually started a blog for my own benefit & also to keep my family & friends informed as I'm inundated with well meaning messages & it's hard to keep responding all the time. If any of you want to have a look it's 1lumpor2site.wordpress.com. 

 

xxx

 

 

 

 

JoJo45
Member

Re: November 2016 Starters

Hi ladies and welcome Fiona,

I went wig hunting yesteday, I thought that this would be my crumble point 😥 But I had so much fun trying on the different colours and styles and have ended up ordering two wigs to vary my look.  Don't think I will bother with the cold cap after all, bring on my new look 😀. Will probably still cry though.  

 

Oh yes Fiona Tourette's that seems to come from nowhere, when I told my friends they also seem to develop this 😀,  and is a good release of stress though best done on your own.  It also looks like we will be chemo buddy's as starting mine next week too.  These ladies have been very helpful with all their experiences so far. I shall be holding your hand from afar.  

 

Had a really nice day yesterday in all, after wig hunting the girls all met up for dinner and last night out pre-chemo, ended up with dancing and being out far too late 😳😳.  Shopping today for last minute bits for chemo caddy inc new PJs incase I have to stay in hospital.  

 

Love and hugs to all xxx

Skye
Member

Re: November 2016 Starters

Hi Fiona

 

Welcome on board - there's always room for one more unfortunately!

 

Sorry that you find yourself in this club, but we're all here together sharing our fears, hopes and any other bit of advice that we can pass on to make it that wee bit easier for anyone else.

 

It's understandable that you feel scared - God, how scared was I??  I never do brave - EVER!!!  Lol - now I've had one cycle of FEC (Last Monday 12/10/16), I feel a lot better in my mind.  I know it's going to be tough, but I'm going to be cured.  

 

It's the unknown that's the scary part - we can't relive others' experiences - we have to do it for ourselves. Others may have SE's (side effects) that are totally different from what we experience, even though they have the same treatment.  It's very much a "suck it and see" thing - you may escape some SE's, but be more prone to others.  Please, please don't be terriffied - if I can reassure you about anything, it's that we're all here together, just trying to get through it as best we can.  You will surprise yourself how you handle things.  I've had a really bad headache on Days 3 and 4, but don't feel too bad today.  You will see that some people say Days 3-10 are the worst. It's a good idea to keep a diary of how you feel because next cycle you can see when you improved.  You can also help others along the way by looking back and seeing that you felt the same way as them, and how you dealt with it. 🙂 

 

Brilliant that you've got a great partner to help you along the way - every little helps. 

 

Your treatment plan sounds like mine - 3xFEC, 3T/H - which is Taxotere and Herceptin.  Apparently, I'm getting everything in the cupboard.  Wanted to ask if there was anything bloody alcoholic in the cupboard!!! Also starting Rads after the Chemo.  

 

You will be fine for Chemo - it doesn't hurt at all, just made me anxious but I was alright on the day.

 

MacMillan have information booklets, I've attached a link that may be some use to you http://www.macmillan.org.uk/information-and-support/organising/work-and-cancer/information-for-emplo...

 

I didn't think the hair thing would bother me either - ha! big mistake!!!  Burst into tears at the wig place, I've been practicing wearing my night cap in an effort to de-sensitise myself from the bald look.   Seems to be working a bit, although I know I'm going to cry (even if just a little bit!) when I get it shaved off.  I was going to cut my hair myself and then get the wig lady to do the rest, but I just don't know.  It might be better to plug in some headphones and face away from the mirror!!  I have asked if I can bring along WINE - wine always helps!

 

Glad to hear that you're getting your marching boots on - I'm lacing mine up as we speak!!  There's no way that that nastly little "C" is gonna get the better of me!!

 

Here anytime anyone needs me!

 

Big Hugs ladies

 

 

Skye xxx

 

 

 

blueash
Community Champion

Re: November 2016 Starters

Hi Fiona,

 

About the cold cap - they are provided by the hospital and you have them on for 20 minutes before, all the time you get the chemo and for so long after. It varies with which drugs you are on. Anyway this is my hair after chemo:

hair2.jpg

 

It is dry and shabby and I had thinning all over with a 2 inch  circular patch which is extra thin at the back on a level with the top of my ears.  I started my chemo in August.

capelmum52
Member

Re: November 2016 Starters

Hi Kelly,
Lovely to hear from you. The fact that you a step ahead of me is good to know as I will be following close behind you and will hopefully give me advance eating of a few of the many side effects and challenges ahead. Please let me know what treatment you are up for and how you came to be in this pickle along with the rest of us ? Just helps to create an image of a person rather than a faceless name. With the cold caps, do you know if they are provided by your onco or if you bought them yourself. There seems to be a mixture on this forum. I am shopping this afternoon to get all of the recommended personal care items before the start on Wednesday and the off to the hairdressers to get a snappy Judy Dench style to tide me over rather than the longer hair I have now. I assume that short hair shedding is less obvious and inconvenient than long hair ?? Either way it will lessen the impact when it does happen.

I too spent a lot of time apologising for my tiraid at the appointment. All credit too them, they didn't bat an eyelid. Any tips you have for the shopping list and pre Oreo are more than welcome. Please let me know if you are working through or not as this might give me some guidance on whether my hope to work some of the time is realistic or not. How are you feeling ?
Speak soon and that you for your quick response.
Love Fiona x
Kelly
Member

Re: November 2016 Starters

Morning Fiona
Lovely to hear from you, and it's a great inspiration to read all the stories that everyone is sharing.

I'm so sorry to hear that you're diagnosis wasn't what you were expecting yesterday. It is a shock to be told that you will need chemo and very frightening at first, as we don't know what to expect. You made me laugh when you said you'd ended up having a Tourette's session!! I totally identified with that. At the hosp I was swearing like a trooper one minute and then apologising the next!!

You're work seems like they have been very supportive, so i can't see why they wouldn't continue to be so. I'm sure they will support you throughout, and you might be able to continue in some capacity when you feel up to it throughout your chemo cycle.

I'm only on cycle 1 at the mo so my hair hasn't started coming out yet. Im a bit scared about that too! But some of other side effects can be more unpleasant, so I think at least that one doesn't physically hurt ☹️️. I'm trying the cold cap to see if it saves any hair. Can you ask about that. At least we're coming into winter so I've bought lots of woolly hats.

Sending you lots of positive thoughts
Kelly xxx

capelmum52
Member

Re: November 2016 Starters

Good morning Ladies, mind if I join you ?
I have had a good read through where you are all at so far and terrified by some of it and heartened by the rest. My heart and warmest wishes go out to you all.
To be honest I was really not expecting to find myself here but glad to be hear with the rest of you.
Me? 52 years old, happily married for a very long time with two kids, one at uni and one working away from home as a teacher. Working as a mortgage broker.
I had a 21mm tumor removed 2weeks ago and was expecting to only had the radiotherapy for 3.5 weeks followed by hormone tablets, described by my BCN as a little hiccup in life, so to say I was shocked yesterday, when they broke the news that it was in two of the two nodes they had taken, would be a bit of an understatement. So now looking forward to FEC 3x3 and T 3x3 followed by more surgery and rediotherapy.

I start chemo on Wednesday which thankfully was much faster than expected so should have reached "hump day" (halfway through) by the new year.

Until yesterday I have been annoyingly positive with all those around me, only letting my true feelings out on this site, as the lovely Charys will confirm. But yesterday spent most of the day either crying or swearing, which are both very out of character for me. It was a bit like a terrets episode at the hospital appointment !
Today I am a bit more composed, and have only 2 real concerns:
1. Work, I am the main breadwinner in our household and although work have been amazing up until now, may not necessarily be as we now have a much longer journey in front of us. Seeing boss and occupational health rep this Tuesday, so fingers crossed for that one.
2. Hair !! OMG, I can't believe I didn't have any worries about losing my boobs (which ironically I now get to keep) but am beside myself with dread over losing my hair ! I feel like such an idiot. I am hoping to get an appointment with the hairdressers today to get a really short hair cut in the meantime to try to reduce the overall impact of how I will feel when it does all fall out.

Other than that trying to remain positive, and trying to find the humour in it all where ever possible.

I will be there by you sides as we march onwards and upwards and into the new year and hopefully by Easter we will be looking back on it all and able to laugh about it.
Love and hugs to you all.
Fiona X
Seagull1
Member

Re: November 2016 Starters

Thanks Sarah04. I'll give those a try too. Gotta make the best of the good days that's for sure. x
Sarah04
Member

Re: November 2016 Starters

Hi Seagull1

Another solution for ulcers is Gelclair. The chemo nurses prescribed it for me and it's fab. Also salt water is really good.
You sound pretty similar to me. Days 3 -8 are the worst and then day 10 I turn into a new woman!
Xx
Seagull1
Member

Re: November 2016 Starters

Hi Skye

 

Ive got the Listerene mild mint alcohol free one. There's nothing mild about it though! Will ask the pharmacist about Difflam or something milder. 

 

Ooooh like the Vaseline idea. Will try that later. Thanks. 

 

xx

Skye
Member

Re: November 2016 Starters

Hi Seagull1

Have uou tried Difflam r Corsodul mouthwash yet?

My hygienist gave me toothpaste to use and said that would help. Think it was called Duraphat. Try Vaseline on a cotton bud for the nose, my BCN suggested that might help.

Hope you feel better soon.

Big hugs.

Skye 💕
Skye
Member

Re: November 2016 Starters

Hi Seagull1 and Truey

 

Fabulous to hear that you're both feeling better - great encouragement for us that aren't feeling too great at the minute. 

 

I can imagine that it would feel amazing to feel some of your strength and  energy coming back - no matter how slowly. We've all just got to keep going -although it's hard - we will get there. 

 

Have a lovely weekend. 

 

Big hugs 💕💕💕💕

 

 

Skye xxx 

 

 

 

 

Seagull1
Member

Re: November 2016 Starters

Hi ladies. I'm now on day 10 and am feeling slightly better each day. Still tired but I've managed a half hour dog walk the last 2 days & some light housework and today I even put make up on (had visitors) which made me feel & look a whole lot better! Got a mouth full of ulcers & the mouthwash burns like hell but hoping it'll help it. Nose is really sore too like when you've had a cold & blown it too much. But certainly not the exhausted feeling I had days 3-6. Might even venture up the town tomorrow. I like to live life on the edge. Lol. Onwards & upwards. xx
Truey
Member

Re: November 2016 Starters

Hi Ladies,

 

I started right at the end of September, so am just at the end of cycle 2 of FEC. Just wanted to say that on both cycles I had the tiredness and spaced out feeling, plus apathy from Day 3 until Day 9. But there is life at the end of the tunnel! On both cycles, from Day 10 it felt as if someone was literally pouring energy back into me. My husband said he could almost see the "real" me coming back minute by minute. So please be reassured that the worst of the tiredness does not last for the entire cycle. Hopefully, you will get some respite and normality before the next hit. Meanwhile just follow what your body wants....

 

Sue xx

Skye
Member

Re: November 2016 Starters

Hi AuntyJulie

 

Im on Day 4 and feel knackered -  don't know what Day 7 will be like lol. I thibk the fatigue is something that's totally bowled us all over. At least now we know what it's like. Think of those poor souls who suffer with this constantly!!! 

 

Keep an eye on the mouth ulcers yoy don't want that getting any worse.  I'm sure the needs will kick in, but dont go doing too much or you'll end up exhausted again. 

 

Have a lovely weekend.

 

Big hugs 💕💕💕 

 

 

 

Skye xxx

Skye
Member

Re: November 2016 Starters

Hi Sarah73, Sue H-S and all you other gorgeous ladies. 

 

I know only too well how you're feeling - head is numb at the back, as if I've been to the dentist lol. Banging sore head and absolutely no energy. Appetite not great either, but Im juicing with Kale and blueberries to keep up with the antioxidants. Its a recipe from my NutriBullet. Also not had any constipation or mouth problems. 

 

Yesterday I came home from work early, was so surprised how quickly I seemed to get  tired.  One minute I was thinking I'll go home in half an hour - then the next minute I had to get out of there right away.  Managed to stay till 2pm, but it's not a demanding job and I was dealing with paperwork and then got Chemo brain. 

Didnt go into work today, went back to try on wig and I feel a bit more comfortable about it - if that's the right word. 

 

I think the most important thing for all of us is to share our experiences and most importantly, share how we dealt with it. Sometimes hearing others experiences is quite frightening for those who haven't experienced those symptoms, and as Sue H-S says, we may never experience the same symptoms with the same severity. Everyone has their own unique experience, which means that you may not suffer as bad as someone else. Remember ladies - there's always a positive. This treatment will come to an end. 

 

Sarah73 - feeling sorry for yourself is allowed every now and then, who wouldn't!!! It's absolutely pants that we have to go through this - but we'll get there. You know we will!!!!  It's a blip in our life that we can recover from. I'm on Day 4 and Im taking each day as it comes - I just keep thinking "maybe tomorrow will be better". I only  has 3 days of steroids so maybe that's why I feel rubbish. 

 

Have a lovely weekend ladies and remember to strut your stuff when you can. 

 

Big hugs 💕💕💕💕💕

 

 

Skye xxx

Sarah73
Member

Re: November 2016 Starters

Well this time last week I was getting prepared for my first FEC. What a week it's been. To say nothing can prepare you for how you'll feel is so true. Had a day yesterday of feeling very sorry for myself and wondering how I can do this for 6 months. Has anybody had a rumbling sensation in head? Has this for 2 days now along with headache. Feels like I'm under wafter and sounds appear louder. I've decided to cancel my port being put in to my chest. Going to see how things are with my veins on round 2. I can't wait to wake up and feel like this heaviness has lifted.

Well done Skye for going to work!! Hope youre still feeling OK. I haven't experienced any mouth problems as yet. Will look at getting different paste though as precaution.

Hope you're all having a good day and good weekend ahead xx
Auntyjulie
Member

Re: November 2016 Starters

Hi Kelly and girls, I'm on day 7 of first fec chemo, for such a normally active and busy person I'm finding it difficult to cope with this tiredness. It 'hit me' yesterday really and still some nausea, at the hospital atm getting more medical and some spray for my mouth ulcer. Roof of my mouth feels like a layer of hard skin! Real hoping the meds work and I can get a bit more done tomorrow. When will I not be so tired girls? Love and hugs for everyone xx
Sue H-S
Community Champion

Re: November 2016 Starters

Hi Kelly,

Please not not get too worried about other peoples experiences on their chemo regime. We are all different in age, as well as possible underlying health issues, which may make us react differently to the same treatment.

It is far too early, unless you are really ill, to ask for any reductions of your chemo. It is usual for people to complete a questionaire before each new cycle and the reported side effects are monitored my the oncologist. As and when you see him/her again they will discuss these with you, adjust your accompanying medication further or suggest an adjustment to your treatment.

The sudden onset of utter fatigue can be very challenging - it certainly was for me. I was so angry withmyself and so frustrated, that there were days, where I could not do what I wanted. We are so used to thinking - "I am tired and I'll have a sleep and will wake up refreshed". Unfortunately, whilst going through chemo, our body might not not work like that anymore.

It is so difficult to accept, that we have little control over what our body 'throws' at us. We really just have to go with the flow and listen to our body. Everything is now different for a while. Sniffles won't just go away - some have food cravings, some put on weight, some lose weight.

Rest when you feel like it, do things when you feel like it. Will it continue through further cycles? Unfortunately it may, but it does not always get that bad, as your body adjusts. It may also depend on your regime. It does appear that the 'knocked out' feeling is worse for those going through FEC the whole way, whilst for those on FEC-T it sometimes gets better, when on the T.

Hope that you wil feel better very soon.

Hugs

Sue xx

 

Flopsy
Member

Re: November 2016 Starters

Hi Kelly,

 

I hope you won't be so badly effected for all of your chemos but I certainly was. For me it was a combo of weakness, fainting and terrible sickness plus a host of other side effects. Really glad you don't have the sickness but it is so frustrating being stuck in bed.

 

Was on FEC-T. For my 3 FEC cycles I was totally poleaxed and could barely move. Couldn't bathe each day. If I was strong enough to get out of bed I crawled up and down the stairs on my hands and knees. Couldn't cook or clean or look after myself.

 

Also, I had infections on week 2 of all my FEC cycles. Ended up in hospital for the first one and then got the GP to treat me at home after that as I was not well enough to cope with hospital.

 

In the end I had to change from a 3 weekly cycle to a 4 weekly one as too poorly to get to hospital for my next infusion. As it was my other-half had to take me there in a wheelchair.

 

I did feel a little better by week three and four but the side effects for me were culmulative and it got worse on all 3 FECs.

 

So, based on this, I asked for a lower dose of T (Doxetaxel) when the time came. Also had severe side effects from that but not as badly as FEC. Still crap but different crap.

  

I finished chemo about 9 weeks ago. Some of the side effects are still there (sickness, losing nails, peripheral neuropathy etc). We now have a cleaner coming in weekly.

 

Recovering my strength (had lumpectomy a month back) and no longer reliant on a wheelchair, can bathe each day.

 

If you do feel this bad you might want to ask your consultant to lower the dose or change to something else?

 

Hope you feel better though and this is just a blimp for you!

Skye
Member

Re: November 2016 Starters

Hi Kelly & Swampy1901

 

Think I might have been one day ahead - I was counting Day 2 as Day 3!! oops.  I had my FEC on 31/10, so this is really Day 3.  I can feel myself getting slower and more brain fuddled if that's possible!

 

Kelly - I really think we just have to handle each cycle as it comes - maybe some won't be as bad as others, but the most important thing is not to be too hard on yourself.  Take it easy and rest/lie in bed when you need to.  The ironing can wait!

 

Swampy1901- Hopefully, we'll learn something from each cycle to make it easier for the next one!  Fingers crossed and thanks for the advice.

 

It's a good idea to count up the treatments and then down.  We will all get through this together.

 

Love to you all Skye xxx