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June 2016 starters?

Millasmummy
Member

Re: June 2016 starters?

Hi Belle, i am also all the above, yes just generally off really. My scalp isn't tingly as such but a few more hairs are coming out when I comb through my hands than normal. I guess we are just at the first week. I keep wanting to eat as well but like you say have to be careful that I don't overeat and then feel sick. I'm craving chicken strangely xxx
Belle
Member

Re: June 2016 starters?

Hi Millasmummy,

 

I know we're exactly in sync and I'm still knackered too!  I'm prone to shaking, making far too frequent trips to the toilet (tmi, I know!), get nauseous if I'm not really careful and generally feel 'off'.  My scalp is also feeling weird - tingly, buzzy so I guess the shedding is only days away.  I had hoped to be feeling better by now *sigh*

 

B x

Millasmummy
Member

Re: June 2016 starters?

Hi Everyone. I'm nearly a week in after having first chemo treatment, and was just wondering what everyone's energy levels are like who have started already too. I am still feeling pretty tired, and napping in the daytime. I dropped my daughter off at nursery this morning and had a 45 minute nap when I got back home! I guess I thought my energy levels would be coming back a bit. Hope your all doing ok today xx
Belle
Member

Re: June 2016 starters?

Sorry to hear this Buster, you're having a really rough time with this line, aren't you 😞 I do hope they manage to get you sorted with reliable access soon.

 

Much love,

B x

buster1
Member

Re: June 2016 starters?

hi there everyone another update; I feel good today but was only home for a couple of hours Monday.ended up calling 999 with severe chest pain. Still in but they are convinced it is not cardiac but more likely to be this Hickman that has been nothing but trouble since going in. Trying hard not to lose ithe line though. Feel well other than that. Wishing you all comfy days and sending love xx

Belle
Member

Re: June 2016 starters?

Hi Rosie and welcome,

 

There must have been something in the air last night because I wasn't sleeping either - should've logged on and we could have had a virtual cup of tea!  If there's anything we can help with, do share.  There are still several waiting to start but probably equal numbers of us who are part way through our first cycle now.  I found the waiting to begin bit awful - I'm much better once I'm 'doing'.

 

love,

B x

RosieFlower
Member

Re: June 2016 starters?

Hi Rosie. I've only just joined the group too, and finding it so helpful and supportive, and I hope you managed to get some sleep! Rosie x
Anon16
Member

Re: June 2016 starters?

Hi all can I join you? Another Rosie! Starting chemo on Tuesday and awake at 3:20am stressing but reading your comments has helped so I may get to sleep at some point lol. Xx
AngeNut
Member

Re: June 2016 starters?

Oh WOW - that's brilliant - and encouraging!
AngeNut
Member

Re: June 2016 starters?

Oh Rosie, sorry to hear that - but think I will be the same - at this moment don't fancy a wig... Might change me mind...
Thank you - I'm SO glad of a a chance to digest everything - this group really helps with that extra week I have.
I can't believe I should have been doing it THIS week - SO much to take in - but this must be what has happened to so many of you!
AngeNut
Member

Re: June 2016 starters?

Hi Sonya - I'm so chuffed to find someone starting the same day - we can keep a close eye on each other!
I think next Tuesday (at Halton (Runcorn near Liverpool) I get all the info about pampering, wigs.
But also it's an assessment - like a 'pre-op' to check how our general health is and can best be comfortable with the treatment.
RosieFlower
Member

Re: June 2016 starters?

Thanks Lucy Lu. Don't think I was really in the 'zone' today for wig trying! Am really glad its working out for you - how far into chemo are you?
Lucy Lu
Member

Re: June 2016 starters?

Rosie. Give the wig shop another try. I got my wig in March "just in case" as I am using the cold cap. I have lost 50% of my hair but still glad I used the cold cap. I think It will be easier for my hair to regrow if I still have half of it. Anyway with not been able to colour it or wash it often I decided to start wearing my wig on Friday. I did feel like a cancer victim for two days but now I love it o mentioned the wig to a colleague today and he said "what wig I just thought you had your hair cut". It really isn't as noticeable to other people as we think it is. O wish I had put it on weeks ago.
RosieFlower
Member

Re: June 2016 starters?

Have a great birthday AngeNut, and am sure Lionel Ritchie will be fab, and well worth the week delay! Had my pre chemo assessment this afternoon, so becoming more real by the day! Went to the Wig shop this morning, and found that really hard. They were lovely in there, but left after 15 mins as felt like a patient for the first time and don't think a wig is for me because of what it represents to me at the mo! So been a hard day, and now lots of bedtime reading!! Didn't have heart scan as they only do it here, if you're over 60, have cardiac problems , and something else that I can't remember!
sonyacheet
Member

Re: June 2016 starters?

Thanks for that Belle.
Xx
Belle
Member

Re: June 2016 starters?

Hi Sonyacheet,

Echocardiograms are entirely normal when you're having epirubicin - the E in FEC - although some centres just do ECGs I believe. It's because one of the rare side effects is heart damage so they like to check our hearts before we start.

B x
sonyacheet
Member

Re: June 2016 starters?

Hi there.
Just having a catch up on the thread. AngeNut you are entitled to a free wig. Try the support centre of your hospital. I start chemo on the 24th like you.
Happy birthday Millasmummy, sorry to hear your bad news. Hope you get to celebrate it in some way.
Glad you are out of hospital Buster.
Hi to everyone else.
I've been asked to go for an echocardiogram on Thursday. Is this normal procedure?
Love to you all xx
AngeNut
Member

Re: June 2016 starters?

You ladies are wonderful!!! 

Yes we went into this well, and what a ride it's been so far...

But most of you must be starting treatment with sore boobs, wounds and swellings ...

I had med lump out 24th May (3 weeks) and nodes removed, 2/8 positive. I am having a lot of swelling underarm which makes it so sore - absolutely dreadful over weekend, so 200ml was drained today (10x with small syringe). It's tender and sore and up a bit already. 2nd time to be drained. 

So really you are starting your chemo already feeling rough - a double whammy! I start on the 24th. 

 

On on a lighter note - where do I go to turn my lovely profile picture (with hair, for now) the correct way - I look stupid! 

AngeNut
Member

Re: June 2016 starters?

Oh bless you.... X
AngeNut
Member

Re: June 2016 starters?

Hi RosieFlower,
I should have started this Friday, but the Oncologist let me delay a week as its my birthday weekend and I'm off to North Wales to stay with family and see Lionel Ritchie!! He offered me anti-sickness to see Lionel 😀....
All the best Friday, I will be thinking of you. X
Belle
Member

Re: June 2016 starters?

Delighted you've been set free Buster1 🙂  Sincerely hope you've managed to eat a decent meal since too!  Don't worry about the private message malarky, just glad you're ok.  The only thing I could suggest if you want to get it sorted is to contact the moderators and ask them to look into your private messaging for you?

 

I've not come across skin sparing mastectomy increasing your chance of recurrence - I've done a quick bit of research and still can't find anything on the subject.  Where did you get this info from?  I would have thought your throbbing is down to phantom type pain rather than anything being left behind.  You mentioned you had clear margins, which couldn't have happened if some had been left.  I wasn't aware of my tumour so don't have any pain there at all but have had weird sort of phantom pains when other bits of me have been removed in past surgeries.  Does that make sense?

 

Hope you're now able to rest and recupperate, ready for cycle 2!

 

love,

B x

julie.galea
Member

Re: June 2016 starters?

Hi Buster,  glad to hear you are finally home,  hope you are feeling better, and at least you will get some decent food.

Take care xx

buster1
Member

Re: June 2016 starters?

Hi lovelies, I'm back home after a nightmare of a week in hospital !!! I have tried many times Belle to reply to your lovely message but I cannot send them. I thought it was because I was in hospital but I've just sent another and it still won't go. 

 

Im not going to enlighten you all about my total trauma, as you have enough to contend with. But I will send you all a big hug and start afresh tomorrow. Thank God I'm out.

 

sorry to hear M,smummy your news. I agree though with Charisse that you will get more peace of mind. I had a skin sparing mastectomy in March with immediate recon and although I love the results, I have now found out that leaving the skin even though the margin was good increases your chance if recurrence, this wasn't mentioned to me before. Also, I do have weird throbbing sometimes in the area where the tumour was and do worry that there is some left behind.

Love and hugs to you all Buster1

 

Charissecarson
Member

Re: June 2016 starters?

Although it sounds scary, once you have a full mastectomy plus node clearance and chemo you can rest assured that it will all be totally gone and you've done everything possible to give you a long and happy future and you won't always have that niggle in the back of your mind that they may not have caught it all. You're having surgery anyway so may as well go the whole hog and sleep easy. In a year from now you'll look back and realise it was all worth it. Xx
Belle
Member

Re: June 2016 starters?

Big hugs, Millasmummy, what a crappy thing to have to deal with on your birthday 😞  I think you're allowed to feel stressed today, don't beat yourself up.  You're bound to feel scared, I think we all would be or have been.  I certainly was when I was told I needed a mastectomy - I was expecting a lumpectomy & 6 weeks rads and instead got a mastectomy and chemo.  All I can say by way of encouragement is that the shock and the terror do pass.  You will begin to get your head around it all and meanwhile, we're all here rooting for you.  

 

Are you up to birthday cake or a glass of something later?  

 

Much love,

B x

Millasmummy
Member

Re: June 2016 starters?

Hi Ladies. I had an appointment with consultant this morning, and now have been told full macetomy on left side and full node clearance after chemo. As there is more cancer in my breast than they originally thought. It's made me feel scared, anxious and stressed again. And now I feel like the chemo isn't working, but I know I've only had one session, next one is not until 30th June, and I want it now. I have a CT scan on Weds too and am dreading it. Trying to stay positive but feeling stressed which I know isn't good. Sorry to be all negative today. And it's my birthday today, my consultant forgot to give me any good news 🙂 :(.
julie.galea
Member

Re: June 2016 starters?

Hi Rosie.
I found the cold cap ok as long as you are prepared for 5 minutes of it being very very cold and uncomfortable.
Mine was meant to be 30 minutes before and 90 minutes after. I had it on for 5 1/2 hours in total as the unit was so busy it took a while for my treatment to be completed but I found it fine even if you look a bit funny.
I did take 2 paracetamol about half an hour before as I had read that it helped.
Hope this helps. I have my 2nd treatment on the 22nd June so fingers crossed it's the same 2nd time round. Let me know how you get on .
Take care. Julie xx
Charissecarson
Member

Re: June 2016 starters?

I tried the cold cap too but didn't manage to keep it on. Some people have found it ok though. I think they look at your type of chemo plus you height and weight and stuff and have a chart for how long to keep it on. Mine would have been a total of 2 1/2 hours including before and after. Apparently if you take 2 paractamol and 2 ibuprofen about half hour before starting it makes it easier to get through the first painful bit until it goes numb. Make sure you tell your nurse you are going to do that though as some of the pre meds include paracetamol so they will need to adjust your dose. X
RosieFlower
Member

Re: June 2016 starters?

Hi Belle.
Thanks for your supportive words and glad you are feeling much better. Its so hard trying to imagine what you're gonna feel like, when I feel really well at the mo! Rosie
RosieFlower
Member

Re: June 2016 starters?

Hi Julie.
I'm starting my first FEC on Friday and gonna try the cold cap - how long did you have it on before and after the chemo? and any tips on making it bearable? thanks Rosie
julie.galea
Member

Re: June 2016 starters?

Hi Belle.
Thanks for the reply. I found the cold cap ok. Only felt it uncomfortable for the 1st 5 minutes and then it was fine. So far haven't lost any head hair but early days yet.
Julie x
Belle
Member

Re: June 2016 starters?

Morning Rosie,

 

Really glad you've found us!  It's a great way to get support along this somewhat turbulent path we're all treading.  If there's any questions we can help with, ask away.  The hive mind here is great.  

 

I'm day 5 from my first dose of FEC and feeling much much better this morning.  I had a rough few days but all was manageable.

 

Keep us posted and good luck 🙂

 

Love,

B x

Belle
Member

Re: June 2016 starters?

Hi Ange,

 

Don't worry, you won't be alone, we're not half way through the month yet.  It's nice having people at different stages within that first cycle because we all learn from each other.  And when some of us are up, others are down so we can support each other along the way.  It's fascinating how everyone reacts so differently and there's bound to be someone who can relate to where we're at.  For example, I nearly cried last night when I read Millasmummy's post - she described exactly how I'd been feeling and I thought it was just me!  So helpful to know I wasn't alone.

 

Keep your questions coming, we'll do our best to answer them.

 

Love,

B x

Belle
Member

Re: June 2016 starters?

Hi Julie,

 

I know LJSam is cold capping - she's another June starter so you're not the only one.  How have you found it?

 

B x

RosieFlower
Member

Re: June 2016 starters?

Hi all

I'm a newbie! Starting chemo in 4 days - yikes! Diagnosed 8 weeks ago and post op from a double mastectomy and axillary clearance! Recovered really well from that - but anxious about Friday. Finding all the support and tips on here really great, and good luck to all

Rosie

x

AngeNut
Member

Re: June 2016 starters?

Hi Diana, let us know when you start... I'm starting on the 24th. I think most people here so far have started chemo.
AngeNut
Member

Re: June 2016 starters?

Hi Sonya,
Have you not had your 1st treatment yet, then you and I are late starters - I start on 24th. I really didn't know the wigs were free - that's a question I've asked .... somewhere.
I've also made loads of soups..
Isn't it a lot to take in - especially when we started this fit and well, or so we thought!

AngeNut
Member

Re: June 2016 starters?

Oh you sound so positive , Sue and thank you for your encouragement! I too am usually upbeat - all this will be a good test. Yes, I like the pirate look, too - you look fab in your photo and I think it's quite a statement - especially with the shades, lol! But I am short and with an older face - so watch this space....
X

sonyacheet
Member

Re: June 2016 starters?

Hi B and everyone else on the thread.
Thanks for all that advice. It's so much to take in. My life is going to completely change very soon considering how well I feel.
My OH started a new job soon and his works have been so good with him. Letting him take time off for my appointments. One of the staff has offered to let me borrow some head scarves from her as she had breast cancer last year and had finished active treatment which was very kind of her.
Someone I have met at the hospital told me not to worry too much about diet and just eat what and when I want. Even if it's only small bits during the day rather than 3 main meals. She said concentrate on making changes after treatment has finished but I suppose everyone is different.
I have shown people pictures of my wig and everyone has been so lovely about it. I haven't had one negative comment which has really boosted my confidence. I keep trying it on as want to make sure I'm wearing it right. I can't get over the fact that you get it for free as they are so expensive.
This week I'm planning to make soups for the freezer so that I'm prepared for when chemo starts so I will be mostly in the kitchen.
Sending love out to all you lovely ladies.
Sonya xx
julie.galea
Member

Re: June 2016 starters?

Evening All.

 

Hope you are all doing OK and coping with the SE's.  Its 12 days since my first treatment and I feel OK, just a bit of tiredness and some headaches lingering on.

 

Just curious if any other June starter is trying the cold cap or am I the only one?

 

Julie x

 

Belle
Member

Re: June 2016 starters?

Oh my goodness!  I thought it was just me, Millasmummy!!!  I've been all over the place today - miserable, fine, tearful, relaxed, foul mouthed trollop, dozy old mare - you name it, I've been it!

Millasmummy
Member

Re: June 2016 starters?

Hi, is anyone else feeling a bit crazy? I think it's the steroids? But I'm not being very nice to my husband :/. I am up and down like a yo yo. One minute I'm chilled the next minute I'm hyper/anxious. I've finished steroids today for this cycle now so I guess tomorrow will tell me if it's the steroids affecting my mood. Hope everyone is ok. Buster1 how are you getting on? Glad you've had some treatment for your sore mouth Belle. My throat is a bit sore but the mouthwash seems to help xx
Belle
Member

Re: June 2016 starters?

Hi Foxy2104,

 

Have you got any white flecks or spots?  I've just spent the morning being diagnosed with oral thrush based on similar symptoms (day 4 for me).  No ulcers, just two white spots that are not huge (need the torch light on my phone to see them), sore mouth & tongue and a general feeling of sliminess.  I rang my oncall number, was referred to my GP/out of hours service, who saw me in the local Urgent Care Centre with a timed appointment.  The whole thing took about 2 hours from start to finish - amazing treatment.

 

I was given Nystatin mouth drops to treat the thrush and advised to increase using my Difflam mouthwash to 4 or 5 times a day.  I already clean my teeth after each meal, and I'm now sterilising my toothbrush using milton solution so as not to re-infect myself.

 

I would call your team and ask their advice because the last thing you need is an untreated infection.

 

Hope that helps,

B x

Foxy2104
Member

Re: June 2016 starters?

Hi, think I've coped pretty well with the first chemo session but 5 days in and I'm struggling with a sore mouth. My breath is pretty gross too, no ulcers just feels swollen and a bit peely? Any ideas on what would help?x
Belle
Member

Re: June 2016 starters?

Hi Ange and welcome,

 

I'm not cold capping either.  I went from bob to short crop to very short crop and will shave once it starts to go. Wigs are free, at least mine was.  I was given a voucher from the chemo unit when I had my pre-chemo chat to take to a recommended wig retailer who were brilliant.  I tried on loads and inevitably ended up with the first one which is very like my original bob hair cut.  I've also got some scarves handy too.

 

Hope all goes well for you.

 

B x

Sue H-S
Community Champion

Re: June 2016 starters?

Hi Ange,

 

Just popped in from the May 9 thread - you are on a brilliant thread here with oodles of support.

Sorry to see you here - but the support is invaluable, encouraging and sometimes so uplifting.

 

We are all in the same boat - I am just a little ahead of you - just having my second FEC last Thursday. I also decided not to cold cap - a decision I have certainly not regretted. 

 

Thankfully I suit a super short crop - and it made it easier for me to lose my hair (80% gone now) - looked as if I had mange for a few days - thank goodness for funky scarves - I love the Pirate look, lol!  

 

Looking at myself in the mirrow - I do not feel distress - but am rediscovering my face!

 

My biggest annoyance was having to clear up constantly after bits of hair floating about EVERYWHERE - despite wearing A beanie constructed from a motorcycle buff.

 

Keeping my fingers crossed for you that your chemo journey will be as trouble free as possible.

 

Hugs

Sue xxx 

AngeNut
Member

Re: June 2016 starters?

I have not cried yet  - from Mammogram to now....
Felt near to it on Friday when I was being told what was ahead - it was a bit brutal...
But reading some of your posts now - I am choked up...
Thank you, brave Ladies!

AngeNut
Member

Re: June 2016 starters?

You have encouraged me.....
X
AngeNut
Member

Re: June 2016 starters?

Thanks for that about the hair. I don't think I want to bother with the cold cap on top of everything else.. I am getting a short crop cut for starters next week (from a bob). Are the wigs expensive?
AngeNut
Member

Re: June 2016 starters?

Hello, 
I'm a newby ....
I had surgery on May 24th for a med lump in left breast and 8 nodes removed - 2/8 proved positive.
This is all from a routine mammogram in March... Thank God for Mammograms,
I'm still recovering from visiting the Oncologist on Friday and being told what's ahead....
I knew I was seeing him, but only on the way did it dawn I was going to the Chemotherapy Clinic! 
A relative who has gone before, has been so helpful and told me about this Group on here...
I'm not sure if I'm posting correctly yet...
My treatment should start this next week, but next weekend I am off to see Lionel Ritchie in North Wales on my (68th) Birthday weekend.
My lovely Professor has postponed a week, and offered me anti-sickness for going to watch Lionel - haha!

I have my Assess and chat at Halton (Runcorn) on the 21st.
PICC on 23rd at Clatterbridge (Wirrell) (Had never heard of this before!)
1sr treatment on the 24th.....

Like you Belle, I have rammed the freezer with soups. My nails are pathetic already, but am putting similar protection on. On Thursday, my lovely bob will get a funky 'Chemo Cut' .....

Best wishes to you all..
Ange