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May '16 anyone?

61 REPLIES 61
Sue H-S
Community Champion

Re: May '16 anyone?

Hi ladies, Hoping all went well for you. I had by first FEC today. Saw a possible new client late this morning and then took myself off for the first session. I am very surprised at the moment (but only two hours after session) as I have had no problems at all during the session, none - nada - nichts, lol. All as normal... Have been told that the following five sessions will therefore be the same. So now waiting to see what happens.....what will my body do over the next days....... xxx
Tanyette
Member

Re: May '16 anyone?

Thanks Tracy, it makes such a difference being on this forum, don't feel as anxious as I did! Will let you know how it goes xxxx

Wosteart
Member

Re: May '16 anyone?

Good luck for tomorrow Tanyette try not to worry it doesn't hurt going in and just take each day after as it comes. listen to your body and rest when you feel you need to after about a week at the most you should feel back to 100% i am looking forward to my next chemo in a funny sort of way becuase i am sure my lump has got smaller after just one chemo and i wanna get it smaller again... Let us know how you get on
Tracy xx
Tanyette
Member

Re: May '16 anyone?

 
Bottyboo
Member

Re: May '16 anyone?

Hi just popping on to say good luck to everyone starting this week. My first one is Friday so I'll be along each day to see how you're all getting on. Love and hugs xx
Tanyette
Member

Re: May '16 anyone?

Hi everyone, just wanted to join the May thread. I start chemo on Thursday 19th at The Christie in Manchester. I have spoken to a few of you who kindly replied to my thread that I am very frightened of starting chemo. It has certainly made me feel so much better to have found this forum to share experiences because as great as family and friends are being I don't think unless you are in this situation it is possible to know how it feels. Good luck to everyone starting chemo this week and keep posting! It's got to be easier if we do it together xx

Guest user
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Re: May '16 anyone?

Spoiler
Hi lynn
Pop over to may chemo buddy group, lots of tips.
My 1 tip for cap is a headband,  but please come n read all tips on other post plus the previous month as you can see their stories so far xxx
Tina  x
LynnW
Member

Re: May '16 anyone?

Hi Geraldine I start chemo 2moro 16th May & I'm trying cold cap, I'm terrified have managed to stay relatively positive upto now but it's finally here MRI 8.15 & chemo to follow ..... Any advice ❤️ Xxx
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Re: May '16 anyone?

Everyone post on the other may start messages instead called anyone want to be my chemo buddy. ...i wish i could delete this one to save confusion? X
GeriF
Member

Re: May '16 anyone?

Hiya,

Yes I'm cold capping. It doesn't sound pleasant and it puts most ladies off because it adds around 3hrs to your treatment each time. But like you say, it's very personal and I wanted to regain some control and if that meant keeping some hair then so be it. I'm going to have my hair cut and wear a wig to work.

 

Geraldine x

Cal B
Member

Re: May '16 anyone?

thanks Geri, will be thinking of you on Tuesday. As you say 'bring it on' lets beat this and then move on.  I have been reading up about cold capping is that something you are considering? Not sure if a I should just go to the hairdresses and have it cut very short. Lossing hair is such a personal thing, didn't know about cold capping until yesterday and thus was kinda coming round to idea of lossing hair! 

 

GeriF
Member

Re: May '16 anyone?

Hi Cal, we all know how you feel. The dreaded chemo together with all the horror stories you've heard but the thing to remember is everyone is different and you may not experience many.

I start chemo on Tuesday and was dreading it for weeks but now I'm at the stage where I think 'bring it on' because this horrible process with cure me and I'll go through anything for that!

 

Take care

Geraldine

Cal B
Member

Re: May '16 anyone?

hi Kim, thanks for the tip re water pre and post chemo! I meet the onocologist on Monday so dont have a start date yet! It is good to hear you have reach the light at the end of the tunnel. Hopefully Radiotherapy will go ok. 

Cal B
Member

Re: May '16 anyone?

I am due to see oncologist on Monday to discuss chemo and start dates. Met Breast care nurse today and feel totally overwhelmed by prospects of chemo and all the possible side effects. I thought I would sign up to the forum so that I can maybe support others and also gleem any top tips that anyone might have? 

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Re: May '16 anyone?

Hi lindy!
Just rant away if it helps,we will support each other through this diversion , we will no doubt laugh and cry along the way. Its actually therapeutic to type stuff to people who understand. My nurse today was honest in saying, i can only guess how you are feeling and how you will be feeling because unless you have been through it you just cant understand and its hard to explain. I don't even know how im feeling most of the time. Xx
GeriF
Member

Re: May '16 anyone?

Welcome Lindy .. you will find lots of support here & we're all experiencing the same fear & the unknown. But it helps to know you're not alone & i think once we all start going through chemo the support network will be invaluable xx
On a diversion
Member

Re: May '16 anyone?

Morning Lindy,

 

Sorry to read about your situation and I agree it is so unnerving when different people tell you different things, you wonder who you can trust ... but a huge welcome to the forum.  I umm-ed and ahh-ed about joining but have found a lovely supportive group of people

 

Isabelle xx

LindyLPB
Member

Re: May '16 anyone?

I'm due to start May 17th. Bit unnerved by all the information/ side effects. I had BC 2006, had lump removed,. All nodes were clear so had radiotherapy and Arimidex 5 years.
Found again in February under arm. Just had large lump and all nodes removed and have to have chemo this time in addition to hormone therapy. I've developed an infection post op. And on 3rd lot of antibiotics. Never joined a forum before. Feeling a bit out on a limb. no one around me with experience and I've found the professionals keep giving conflicting info. Very unnerving..
GeriF
Member

Re: May '16 anyone?

It's all so confusing isn't it? My missed call wasn't the wig company but i have my chemo chat on fri afternoon & will ask the question re Trendco. I will let you know what they say. Had a really tough, emotional day at work today. Got a bone scan tomorrow & because chemo is so close it all got too much. I know what you mean about going out etc.but i think once we start & get used to the cycle of good days versus crap days we can be more positive about being sociable. Xx
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Re: May '16 anyone?

Just that they run a clinic on the georgina ward....cant remember what day. Or i can call n book an appointment in their shop in Bromsgrove. Id rather do that to b honest.
Trenco are meant to be good though. ..im going to let my hairdresser choose. Not sure if you can use the voucher anywhere, .?! Hope you're ok? Friend came round from work n wants me to go out next week with a couple of them but I said im not good company at the moment. Spose i should though. Its just crap having chemo day after mg birthday! And also because physically i feel perfectly fine right now. Xx
GeriF
Member

Re: May '16 anyone?

Oh it's possible as I've just had a missed call. What did they say?

Guest user
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Re: May '16 anyone?

Just had call from wills wigs , theyve been sent a referral  from hospital,  did you get called? X

Guest user
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Re: May '16 anyone?

Oh thats awful too! I just hope that the wards ok were going on. Id hate their job to be honest xx
GeriF
Member

Re: May '16 anyone?

Sounds awful for you. The last thing you want to discuss after hearing all of that is scarfs & wigs. My nurse is lovely but i can't always get hold of her. The only gripe i had was Mr  didn't tell me i was triple negative at results. I got a copy of the letter he sent to my gp. I was alone at home trying to absorb the news & it was the worst experience of my life. The following day i saw dr (removed due to Ts and Cs) & 2 lovely nurses who calmed me down & put it into perspective xx

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Re: May '16 anyone?

Yes they are. This one was at my 1st meeting and was overly lovey dovey. Then she was also at my results appointment and literally sat 2cm from my face trying to tell me about scarves n wigs! Then i received results letter from her and it was incorrect! She'd written her 2 negative. ..i was so upset n confused but couldn't talk to anyone that day. Bcns were in meeting's all day and didn't even return my call after id left a message! I rang mr (removed due to Ts and CS) next day n he apologised for her. I then spoke to her n she wormed her way out of it. Said as a favour for me she'd come sit with me! Errr no thanks i said! X

GeriF
Member

Re: May '16 anyone?

Small world eh?

The next session is the 9th. I would really love to go but as it's my 1st chemo day will see how I feel. 

The nurses are a mixed bunch lol x

Guest user
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Re: May '16 anyone?

Yes i had mr (removed due to Ts and Cs) too.
No, no idea about the group! Might go...must say theres 1 bcn i dont gel with though. ...so if shes there. ....x

GeriF
Member

Re: May '16 anyone?

I'll stop on that one too and we can keep in touch with eachother.

Yes, Dr (removed due to Ts and Cs) was my surgeon. Are you aware of the support group that runs every 2nd Mon at Merry Hill and is run by the breast cancer nurses?

 

G x

Guest user
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Re: May '16 anyone?

Hi Geraldine, im going to stay on the other thread k think, the chemo buddy one. Dr (removed due to Ts and Cs)?

GeriF
Member

Re: May '16 anyone?

Hi Tina,

Yes, it's very likely we are. I'll have a go at messaging you too. I feel so unprepared for chemo and I start next Monday! I think I'm still in denial.

 

Geraldine

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Re: May '16 anyone?

Hi Geraldine 

I bet were under the same  Dr?  I tried to  private message  you but it wont work!

Just cancelled  our family holiday. .made it extra real! 

My 1 and only tip so far .....if you want to numb your hand prior to  a needle is Emla cream....its fab, i even used  it on my boob when i had to have that needle next to my nipple! She was amazed i didn't even flinch. Got it from  boots x

GeriF
Member

Re: May '16 anyone?

Thank you for this sissy. I will also be on FEC-T. Great tip about the nails and I won't be sorry to see my upper lip hair disappear. You make it sound so doable & it's fab that you have a holiday to look forward to xx
GeriF
Member

Re: May '16 anyone?

Hi Tracy .. like you, i'm dreading the effects on my family. I'm a single mum to 2 boys (15 & 17) & i've been totally open & honest with them both about how i feel. Even so, everytime i look at them both my heart breaks. We can get through this xx
Tina - i'm also cold capping & will pack my own blanket & scarf & take a couple of paracetamol beforehand. Stay strong! X
Claire & Kim - your advice is so appreciated. It's lovely that you take the time to think about us ladies about to embark on the chemo run.
I had such a bad day yesterday & to make matters worse i started my period. Haven't had one for 3 months & supposed to be having a bone scam on thurs which i'll have to cancel for at least a month. Keep getting dealt daily blows!
Geraldine x
Kim555pink
Member

Re: May '16 anyone?

Hi everyone, I'm also from the January thread - just taken my steroids ready for my last dose of chemo tomorrow and have started in my first bottle of water of the day - big tip, try to drink 2L of water the day before, day of and day after chemo and then as much as you can manage after that!
I've been on FEC-T and I'm in the minority because I actually preferred the T part to the FEC!! I'm just not good with feeling sick and dizzy but can tolerate pain (well up to a point!)
For FEC I was given Emend to take the morning of chemo and 2 days after (I think it was a further 2 days) and 2 other antisickness meds, one of which was a steroid. I had no actual sickness, just felt dizzy and hungover. I had another antisickness tablet to take if needed, but never did. I generally pottered around the house doing not much in particular for the first few days but stayed in bed or on the sofa if I really didn't feel up to it. After 7 days I felt much better but as your immune system is at its lowest then, I generally stayed in but had a few days or evenings out with friends as long as I avoided anyone who wasn't well!! By day 14 I felt I could function normally and by the end of that week seemed to concentrate getting the house clean and tidy, washing and ironing up to date and filling the freezer with chilli, Bolegnese sauces and shepherds pie bases to make life easier when I wasn't up to cooking.
My cupboards are full of snacks - nuts, cereal bars, ritz crackers, biscuits etc - anything I think I will fancy eating at short notice with minimum effort! At night I have a snack box with ritz crackers in it!! Healthy eating is best, but honestly sometimes you just have to eat cr@p to satisfy your cravings and get through it!! I'll get back to healthy eating again in a few weeks time when it's all over!
I see there are 2 threads for May - so I shall copy this if I can (!) to the other thread too!
Loads of good luck to you all - you CAN do this! It is scary to think about but once you've started you do deal with it and you do have days when you feel human again! Drop into the other threads for advise (or a good rant!) I imagine our Jan thread will be quieter than usual as we are finishing and going into radiotherapy etc, but we are a friendly bunch and will definitely be happy to give you our words of wisdom!!
Kim xxx
Sissylw1980
Member

Re: May '16 anyone?

I did have some days where I would be in bed. Usually days 2-4 on FEC and days 5-6 on T. I'd just lay there watching box sets feeling sorry for myself. It does pass though and the good days soon come xx
Sissylw1980
Member

Re: May '16 anyone?

I had all my scans done before my mx. Pre chemo check was a chat with oncologist about what to expect, then ecg and bloods.

I've kept my toenails painted with dark varnish throughout chemo and on my fingernails I used gel nail varnish. So far my nails have been fine, but I think you find that they can start having problems and breaking once the T part of chemo had finished.

FEC is all about head and body hair loss. Around day 16 after chemo 1 my head hair started to shed, so I shaved it to a grade 2. My lady garden hair, leg hair and underarm hair started to leave. My facial hair (top lip) has gone and the hair on my arms has thinned. My lower leg hair started to grow back when I started T, but at a much slower rate. Eyebrows and lashes only started to thin out and leave once I started T. I didn't completely lose my head hair, however it thinned out greatly and was patchy, it also turned really fair in colour. Since starting T on chemo 4 my head hair has started to grow back.

The worst thing for me on FEC was constipation, so try to keep on top of that from the start. I've found the T harder than FEC, but remember everyone is different. On FEC I would usually feel better from around day 11 so would be back out and about socialising. I'd usually fill my good 10 days up with fun things to do. On T I start feeling better around day 12.

I've got rads starting in a few weeks and am off on holiday to Spain end of July. In the four week break between chemo and rads, I would be happy to go away the week before rads starting. Xx
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Re: May '16 anyone?

Also, did you have any days so bad you needed to stay in bed?
Are your nails affected badly?
And what happens at the pre chemo chat other than blood taken and an ecg? Im sure the oncologist mentioned a bone scan and mri but she said it was to put my mind at rest? Sorry for the questions xx
Guest user
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Re: May '16 anyone?

Hi, how are you feeling now its over? If you had to go abroad in a couple of weeks would u be ok and able to enjoy it do you think?
Sissylw1980
Member

Re: May '16 anyone?

Hi Tina, I'm also from January thread, my final chemo was last Monday. Try to drink as much water/fluids as possible the day before, day of and day after chemo. I aimed for at least 2 litres a day. It helps to flush the chemicals out and also helps with keeping your veins plump for cannulation. If you're being cannulated then keep your arm warm on route to the unit, I used to use heated wheat bags. Though eventually I ended up having a picc. I used to not eat any of my favourite foods on the day of chemo as I didn't want my mind to associate them with the nausea of chemo, sand went for perfume. I used to wear my least favourite on chemo days, which I have now binned! As Claire said, chemo is hard, but it is doable. Xx
Wosteart
Member

Re: May '16 anyone?

Hi geraldine i am also starting my chemo on may 9th as nervous as i am, i am also eager to get started. I am nervous as to what lies ahead and how the chemo will affect me and my family but we can do this i am sure of it Tracy xx
Cs66
Member

Re: May '16 anyone?

Hi Tina, my husband hates hospitals and even though he has gone with me each time I usually send him off to do shopping or something as its sometimes easier on your own!
Re cold cap. I took paracetamol each time and the nurses have given me hot drinks and a heat pad. If you can get through the first ten minutes or so you can do it. I nearly gave up in cycle 4 as it isn't easy but I got through it and don't regret it. My hair has thinned a lot especially just after the second cycle but it means a lot to me to have kept my hair. Even though it is very thin. The new roses said if I grant cold capped I wouldn't have any hair at all.

My rads start 5 weeks after my chemo finishes and I am planning to go on holiday two weeks after. Having missed two planned holidays due to chemo I really need a break! Our holiday insurance paid up on both and were very helpful.
The FEC part of chemo (if that's what you are having) is pumped in through a syringe by the nurses and the T part is a drip.
Take all the meds they give you and if the sickness and nausea are bad ask for emend which is a more expensive but very effective anti sickness drug. I was never actually sick as I took that from the start.
Good luck
Claire xx
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Re: May '16 anyone?

Hi Claire, 

Yes terrified i am.....the thought of walking into the room and 1 putting the cap on then 2 having the chemo itself (through a drip?) Makes me literally feel ill. In a weird way id rather be alone for it. My husband is a total stress head so he'll get on my bloody  nerves! 

Tips please?  I've read that taking a shawl helps to wrap up in whilst  cold capping helps, and sipping hot drinks?.?and taking a couple of paracetamol beforehand is a good idea? 

Any thoughts?  Much appreciate this. Im going to  callTuesday and see if i can start earlier. They gave me 18th for pre chemo chat (whatever  that  involves ) then a day off for my birthday then 20th start! 

Oh......last question for now......im going to haveto phone monarch to cancel or defer our holiday that was booked before all this. Considering my last session is approx August 19th when would i be able to fly? Is radiotherapy immediately after or do we get a break?ill need a holiday im sure! 

 

Guest user
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Re: May '16 anyone?

Hi Claire, 

Yes terrified i am.....the thought of walking into the room and 1 putting the cap on then 2 having the chemo itself (through a drip?) Makes me literally feel ill. In a weird way id rather be alone for it. My husband is a total stress head so he'll get on my bloody  nerves! 

Tips please?  I've read that taking a shawl helps to wrap up in whilst  cold capping helps, and sipping hot drinks?.?and taking a couple of paracetamol beforehand is a good idea? 

Any thoughts?  Much appreciate this. Im going to  callTuesday and see if i can start earlier. They gave me 18th for pre chemo chat (whatever  that  involves ) then a day off for my birthday then 20th start! X

 

Cs66
Member

Re: May '16 anyone?

Hi everyone starting in May. I'm from the January thread and thought I would post here to give you some encouragement as I understand exactly how you are all feeling right now. I have my last chemo on Tuesday and whilst it isn't easy it is doable. I was petrified before I started but I have found that despite the bad days there are days in each cycle where you feel well and can  do normal things. I have cold capped throughout and although it is very unpleasant I still have a covering of hair and if has helped me cope. I have been surprised how quickly the time has gone and I am very relieved to be at the end.

The  monthly thread has been a huge support to me and it has been helpful dippng into other threads to find out what to expect

good luck with everything. It is easier once you have started and can tick off the days till the end.

lots of love

claire xxx

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Re: May '16 anyone?

Im at the same place as you!
. I wish I could work...to keep some normality. Its going to be just awful having nothing to do but wait x
GeriF
Member

Re: May '16 anyone?

Hi Tina,

I know exactly how you feel and I'm sending hugs to you.

I cannot explain to anyone how I truly feel and can feel myself withdrawing. I'm constantly putting a brave face on things and feel totally out of control. I guess when we start the chemo we'll physically meet others going through it together with supporting eachother via this forum. 

I'm going to try the cold cap treatment as I want to try to preserve some hair. I have a great head of thick hair so hoping to keep some but I'll have to get a wig for standby.I know I'll lose my eyebrows and lashes. Just dreading the whole physical change as I'll be working in between too. 

 

Do you mind saying where you're being treated? I'll be a Russell Hall in Dudley.

 

Geraldine x

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Re: May '16 anyone?

Hi Geraldine,  its surreal isnt it, im in West Midlands too. Just dont feel like doing anything  or seeing anyone as its difficult to  try and  be cheerful  around everyone. Just gog back from  lunch  at the inlaws and I  hated  every second of it but hated  myself for feeling so crap. I just  can't explain it to anyone. Xx

GeriF
Member

Re: May '16 anyone?

Hello ladies,

I start chemo on the 9th May and would love to join this support group. I'll be having 6 x FEC-T followed by 15 x rads. Absolutely dreading it and feeling very tearful this weekend. I live in the West Midlands and a single mum to 2 teenage boys (15 and 17). Trying to be positive but feel so overwhelmed with the whole process.

 

Geraldine

On a diversion
Member

Re: May '16 anyone?

Hiya,

 

Is this the May chemo thread or the other one or shall we do a separate May starters thread? I find it confusing with two threads to keep track of ... What do you all think? 

 

X

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Re: May '16 anyone?

Thanks 

Im just being a scaredy cat and trying  to get out of it if possible obviously.  X