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June 2016 starters?

haz25a
Member

Re: June 2016 starters?

haz25a
Member

Re: June 2016 starters?

Hi Alex,

 

Yeah, they're like a "tube" i.e. open at the end so you could tie them. Not sure how thick these ones will be at that price although you can get more expensive ones which may be thicker. Obviously they are designed to be worn under a headscarf but I was thinking of wearing them around the house. I looked at some wigs yesterday and they're going to order some more styles in for me which should arrive next week.

 

My intention is to wear a wig when out as much as possible but it might be too hot, uncomfortable etc. I ordered some cotton jersey sleep caps and "ready made" head scarfs (elasticated at back so no faffing around tying them) from Annabandana, they're pretty reasonable and delivery is quick.

 

I'm going to try and post a link from this website as there is a page about headwear that had some discount codes for websites.

 

The losing my hair bit doesn't bother me so much, although that might change once it actually happens, I'm looking forward to losing my bikini line, leg and underarm hair. Lol!

 

Good luck. xx

Alex2016
Member

Re: June 2016 starters?

Hazel, I'm just researching headwear as start chemo 5th July. Feel sick with regards to losing my hair. However, I think if I had headscarves, wig etc in advance I might start to feel slightly better about it. I've had a look on EBay for the hijab as you suggested. Would you just wear one of these smaller caps and then put a scarf or something round to dress up? Maybe give it a bit of body? Someone suggested a fringe from Heathershair which I am going to look into to. I'm finding all this a nightmare! It's the unknown and not knowing what you are going to look like and feel like with no hair. I'm hoping it isn't as bad as I am imagining.
haz25a
Member

Re: June 2016 starters?

Hi Ladies,

 

Just had a quick look at your threads, it's been a busy couple of days for me. Went to look at wigs yesterday in town. I had my Muga?? Nuclear Ventricular function heart scan today, I will be having 4 xTC and Herceptin at my first chemo. Went well, no problems. Had my id bracelet on but still felt I had to say about not having BP, cannula in right arm, I'd not convinced people actually "read" what is on your id bracelet but better than nothing I suppose in case I forget to mention it. Was at another hospital on the other side of the city, it's huge and really busy. I'm so glad I'll be having all my others treatments at my smaller local hospital, I say small, it's actually quite a big campus which has a psychiatric hospital and specified Cancer Centre on campus. It's only a ten minute drive away.

 

Re: Headwear, I've been reading a lot of old threads on here about people receiving the same chemo regime as me (TCx4). I picked up a good tip about Hijab underscarves, tie hats from ebay. They're really cheap!! Starting from £1. I've ordered some but cannot comment on the quality as I've not received. Just type Hijab underscarf/head tie into ebay's search.

 

Sorry to hear that some of you are suffering bad side effects at the moment. 😞 I hope you feel better very soon.

 

Best Wishes

 

Hazel. x

 

 

Emma111
Member

Re: June 2016 starters?

Hi Marije, sorry to hear about your child's hand foot and mouth, I can't even begin to imagine how difficult this is for you with children. I really hope you get some sleep and constipation eases.

Netti and Anon, roll on 10 days time when we should get our energy levels back to enjoy some nice days before cycle 2! Such a weird thing isn't it, anticipating feeling ill .... but at least being able to look forward to some good days.

Im feeling better since last night and early morning sickness but don't like to smell food cooking or want to eat much or around others. Don't know why and don't know if normal as don't feel bad at mo ....may be the sickness last night has just had a bit of an effect on me and be a bit better with that soon.

Went in for my injection in stomach to help with infections which was fine in itself but was a blubbering wreck as an elderly man in bed next to me was being told chemo could no longer help his bone cancer and they would do what they could to make him comfortable but now wanted to concentrate on quality of life. I could hear it all and so upsetting as his wife was distraught! Hideous! I can't imagine what he or his wife will be feeling when they go home this eve knowing nothing can increase his life expectancy! I can't stop thinking about him and his wife 😢😢

netti37
Member

Re: June 2016 starters?

Thanks B...I'll see how it goes. I'm prone to it anyway now and again. But will bear it in mind about the weekend x. Hope you are doing ok. X
Belle
Member

Re: June 2016 starters?

Hi Netti,

 

If the indigestion persists, make sure you let the chemo team know because they'll prescribe you lanzoprazole or omeprazole or something similar which will work a treat.  And don't leave it till the weekend - much easier to sort out in the week!

 

B x

Belle
Member

Re: June 2016 starters?

Hi T & welcome,

 

Have a browse through the thread if you get chance a there's lots of advice throughout.  Sue's list is reaslly helpful and take a look at the July thread too as they're all about preparation at the moment and lots of lists are being posted.  I posted a list of what I packed for chemo 1 earlier and to save you scrolling back I'll cut & paste it:

I took a bag of bits with me including the following:

  • sweets to suck in case of instantly yacky tasting mouth - which I got about an hour into treatment; 
  • 1.5 litres of water, half infused (basil, cucumber & lemon) and half plain; 
  • selection of non-tea tea bags, green, mint, ginger; 
  • crossword book & pen; 
  • earbuds for iPhone with updated listening matter;
  • lip balm, gin & tonic flavoured, obviously;
  • book;
  • tissues
  • scarf/shawl thingy in case I wanted to wrap up

In the run up I spent a lot of time filling the freezer with meals for when I wasn't feeling up to cooking.  I made soups, main meals, ice lollies, snacks.  I basically ran around like a blue ars*d fly as I didn't want to have time to stop and think.  When it came to chemo I was knackered!  So I would advise trying to sleep too!

 

Hope that helps,

 

B x

netti37
Member

Re: June 2016 starters?

More tired today than anything else. But have brought some Gaviscon and that has helped. Go with your cravings Rosie. But your right u probably wouldn't eat it all anyway. Xx hope your doing ok. X
Anon16
Member

Re: June 2016 starters?

Sorry to hear your feeling poorly Netti. I have some anti reflux and mouthwash from the nurses so ask next time you go and they should give you some. I have some sachets for after I was pregnant for making things flow as also not been since day one but trying to eat more.

I'm getting weird cravings for things today though. Chips with the skins on dipped in bbq ketchup and now cottage pie. Never got any cravings when pregnant so weird. I don't think if put in front of me I could eat it but still a serious crave.
netti37
Member

Re: June 2016 starters?

Thanks for that Sue. This forum is brilliant for sharing advice and experiences. I'm so grateful for it. Xxx
Sue H-S
Community Champion

Re: June 2016 starters?

Hi netti37,

all sounds normal for the moment. the tiredness is because your body has less ogygen, but should get better towards the middle of next week. The shakyness might be your sterodis, so should stop, when you stop taking them. Take as many naps as you can, whe you feel you need them. Unfortunately sleeping will not stop you from feeling tired at the moment. YOur sleeping pattern may also be disrupted. If you wake up in the middle of the night - try not too hard to fall asleep again. If you cannot - mooch around the house and do something - and when you feel tired again - off to bed. You will sleep again.

Senna tablets required now to get everything moving again! Prune juice?

The next few days : the refllux may become more troubling, but over the counter stuff should help. If not something to discuss with your treatment team - there are tablets they can prescribe. Watch our for a sore throat. Otherwise, unless you catch an infection you should in theory be fine!

 

Hugs

Sue xxx

 

netti37
Member

Re: June 2016 starters?

Well its day 3 for me and my energy levels are low today. Had a active morning at hairdressers then wig fitting, but got back and went straight to bed. Got up as kids got back from school, but feel shaky and tired still. Still waiting for something else to happen. Its like the calm before the storm?? Getting a bit of reflux and not been to the 'loo' since day 1.
But hardly eating so that's probably why.
Hope you are all doing ok. Xx Emma, hope your feeling better xx
Anon16
Member

Re: June 2016 starters?

Sorry to hear that Marjie - my daughter had it twice and I begged the doc to give her cream and it cleared almost instantly and she slept better with the cream on. Hope your ok xx
Anon16
Member

Re: June 2016 starters?

Can I add ice lollies to that list, helping with the mouth, sick feeling and generally refreshing. Bought a mould thing from Aldi and filled with juice.
Marije
Member

Re: June 2016 starters?

Hi ladies,

 

Bit quiet at my end here, mainly because my youngest turns out to have Hand Foot And Mouth.... JUST when I'm at my most vulnerable..  typical. Not much we can do though. I phoned the cancer helpline, and I need to monitor myself, but with kids in the house it's totally unavoidable that virusses and germs come in.. 😞 

He's been so poorly that he's been screaming for the past 2 nights, so no sleep whatsoever...again.. just when you need sleep to recover! So feeling pretty exhausted to say the least. And constipated! Ha. And some sore bits in my mouth. Other than that, I cant complain. 

 

Emma, I was sick quite a few times in the night and morning after chemo. Maybe about 5 times? Gradually got better, still a bit nauseous by Sunday, but then all fine. The oncologist said he wants to give me stronger tablets next time.

 

xxx 

Sue H-S
Community Champion

Re: June 2016 starters?

Hi T,

 

so sorry to have to find you here, but it is a great, lively and supportive thread.

As to your questions - and others may add to it - here is a list, which may be of help

 

The list is long - just think about what you personally may need, rather than getting everything. Judge as you go through the first cycle, what is essential for you.

the most common items, which one really should consider are

  • dentist before starting
  • mouthwash
  • Senna tablets and take them a day after treatment, unless you have the opposite challenge
  • small light meal about an hour before you go
  • music, book, etc. to keep you occupied - FEC usually takes about 2 hours
  • boiled sweets/lollies, nibbles (ginger biscuits) whilst you are having chemo
  • drink bottles filed with anything you are able to drink lots of before and during treatment
  • warm wrap - mainly for your arm - helps to keep the vein open and makes it more comfortable
  • If cold capping your treatment will last a lot longer - I think  by about 3 hours - take additional blanket jumper etc to keep your body warm - your head will be freezing - literally and freeze them
  • prepare some easily digestable and nourishing meals ahead of treatment, in case you lose your energy after day 3 of treatment and freeze them - or buy some good quality ready meals
  • AND get your medical ID bracelet/necklass before you start, if you can - it will not only help them, but also you - to remind you, which arm should not be used for cannulation, blood taking, blood pressure taking

Some will have no appetite - some, like me eat like a horse, lol - we are all so different 

This is has also turned out to be a really goo thread for those of us, who like to know more about looking and feeling good whilst going through chemo

https://forum.breastcancercare.org.uk/t5/Chemother​apy/Chemotherapy-Tips-and-Tricks/m-p/1017289#U101...

Hugs,

Sue xxx

Emma111
Member

Re: June 2016 starters?

HI Bootyboo

Sorry to hear you are having a rubbish day. Today is another day though and better days are coming. Keep sipping water rather than whole drinks at a time and it'll come good in the end. You will get through this 💪
Anon16
Member

Re: June 2016 starters?

Bottyboo I also have that dilema with wigs so hoping the actual try in will provide me with the answers.
Bottyboo
Member

Re: June 2016 starters?

Hi all. Emma you did the right thing. The one thing they drilled into me is that nobody should have to suffer the nausea/vomiting and that if I'm sick to ring up. Ondansetron is normally the first course action and it is very good however there are many many more that are now on the market like Emend. Also they can give you an injection.
My worst day is today. It was last time too so I know I've got to get through it. Doesn't help that I have to go to the clinic for my dressing change today. It was at this time last cycle I felt like giving up but you do get through it and it is all worth it in the end.
Now tomorrow, do I go for a wig near to my normal or do I go for a wig in a style/ colour completely different? Most people have already seen me with no hair or a scarf on. Had a dream last night that there were only 2 wigs to choose and nobody was allowed with me. I chose my fave and everybody hated it lol.
Emma111
Member

Re: June 2016 starters?

Hi T

Do not worry about the treatment, there is really nothing to fear. Imagination I promise is worse than reality. Do not worry what you have read about others side effects or my side effects. ... it doesn't mean you will suffer the same. You take each day as it comes. If you do have a side effect of treatment you need to remember it will pass and it isn't forever. You can do it and you will come out better for it at the end of your treatment. I'm 37 and I got some hardwear from Anna Bandana .... a really reasonable site and trendy headwear to choose from.
You above all need to remember to take a deep breath and realise your inner strength; you will get through it all as we all will💪

Anon, sorry to hear you are having a bad day ..... remember better days are coming. I feel so much better now my anti sickness regime has changed.

Hope everyone else is keeping ok today xx
Anon16
Member

Re: June 2016 starters?

I'm having a bad day too, have only made it from bed to toilet and bed to get drugs. Just feel so tired. My boss called and I cried omg at least he now realises I'm not going in at least this week. Ugggg.
T
Member

Re: June 2016 starters?

Hi Everyone,

I am a newbie to the forum and so glad i found you x I start my Chemo on Mon, just  wondered if you have any tips on things to help prepare you - mind and body;-/ ??  feeling quite sick just at the thought of next week so I'm trying to keep busy and be pro-active in gettiing myself ready.

Also, if anyone can suggest good headwear for a forty something year-old?

Big hugs  T x

Emma111
Member

Re: June 2016 starters?

Thanks everyone, the hospital called me in to be checked over and all ok with blood pressure etc. and got a new anti sickness plan. I think feeling sick is actually worse than being sick, at least there is relief for a while once sick. Need to remember, the feeling of any side effect will pass and it's not forever. That's what I'm constantly saying to myself to get through...... because it's true!xx
RosieFlower
Member

Re: June 2016 starters?

Thats good news Judith, and glad you're feeling more 'you'. Its also day 7 for me, and first few days weren't too bad and actually felt good Monday and Tuesday (jprobably to do with the drugs), but by god did i feel I'd been hit by a bus yesterday - completely floored! Also knackered today!
Emma, I hope the sickness has been sorted for you, and you're feeling better by now Rosie x
Sue H-S
Community Champion

Re: June 2016 starters?

Hi Judith63,

Congratulations! I can just imagine how you felt before and now. I have been there too - and also all clear.

One worry gone - yay.

Have a great day relaxing!

Sue xxx

judith63
Member

Re: June 2016 starters?

Hi all,

 

Well done all you girls who started this week, you are right, the fear of the unknown is the worst part.  I woke up this morning (day 7) finally feeling a bit more like me, the sun is shining so all feels a bit better.  I have the most fabulous BNP? (can't think of the initials at the mo, but the specialist nurse...) - she phoned me at 9.30pm last night to tell me all the results from bone,liver and lung tests were good and to wish me a good nights sleep...never heard of that happening before - it was her day off too!  I don't want to be on this journey, just like all of you, but have met such fabulous people already.

 

Have a good day all

Judith63

Sue H-S
Community Champion

Re: June 2016 starters?

Good monring,

 

I posted something re wigs on 

https://forum.breastcancercare.org.uk/t5/Chemotherapy/Chemotherapy-Tips-and-Tricks/m-p/1017289#U1017...

And Ali-B started a thread re how whe might be feeling and understanding better

https://forum.breastcancercare.org.uk/t5/Chemotherapy/An-article-about-coping-with-feelings/m-p/1026...

 

Hope they are of help.

 

Hugs

Sue xxx

netti37
Member

Re: June 2016 starters?

Emma what sickness tablets are you on. I was given Emend to take for 3 days (from day1) and also Ondansetron (twice a day). X
Charissecarson
Member

Re: June 2016 starters?

Morning Emma. As you know I've just done chemo 2 and last night was a bit worse than the last one and was actually sick this time and just like you i was sick about 22 minutes after taking the anti sickness drugs which was totally random. I felt OK over night this time but did wake up over night the first time so it's not just you. Did you have dinner last night though because even if you don't want any food, for me once I'd eaten it eased my nausea. Ring the helpline anyway, I think you can go and get an anti sickness injection If you're still feeling rough.
C xx
netti37
Member

Re: June 2016 starters?

Oh Emma, so sorry to hear that. How are you now. If your still sick id phone the help line and check your temp. Should not be over 38 degrees. I hope your ok. Xx
Anon16
Member

Re: June 2016 starters?

I was wrenching bit wasn't actually sick and found the tablets stopped the feeling so I agree you need to call them for different meds. Hope your ok xx
Belle
Member

Re: June 2016 starters?

Sorry to hear this Emma,

I wasn't sick, just horribly nauseous. But I agree with Taran, call your chemo hotline. I had to call mine twice: once for oral thrush and once for indigestion. Both times they were brilliant and certainly gave me confidence to call whenever. So if in doubt, call. Vomitting is definitely something to call them about. There are all sorts of anti sickness drugs you can be given so a different sort may be the answer.

Hope you get it sorted,l & keep us posted,
B x
Taran
Member

Re: June 2016 starters?

Hi Emma, I can't offer any personal advice yet sorry. But I have been told that if I'm sick more than once in 24 hours I need to call the 24 hour helpline. So it might be worth giving the hospital a ring to let then know what's been happening overnight. Hope you get it sorted quickly this morning and start to feel better soon. Hugs xx
Emma111
Member

Re: June 2016 starters?

Sorry to bother everyone at such a ridiculous time of day but just wondered if anyone else horrendously sick 4 times during night after first FEC? Took all anti sickness tablets but not worked. In fact sick 10 mins after 'bacK up tablets'. Any advice? ??????
Bottyboo
Member

Re: June 2016 starters?

Thank you Belle. Xx
Belle
Member

Re: June 2016 starters?

Sorry you're feeling down, Bottyboo 😞

 

It's probably the drugs - they can cause you to feel depressed.  It's drug induced and thankfully temporary.  Hope it lifts quickly for you.

 

Much love,

B x

julie.galea
Member

Re: June 2016 starters?

Thanks for that C.  I dont know anyone that has done it to the end,  Its about 50% thinner already and thought that was it,  I am going for a wig on Friday and with my hair being thinner it will probably sit right,  I wont rush into stopping the cold cap now and will wait and see what happens over the next couple of weeks.

 

Julie xxx

Bottyboo
Member

Re: June 2016 starters?

I also would not complain if they said sorry we got it wrong you're fine! I'm fed up of this defining who I am and how I am.
I'm like Sue and have no side effects from the gcsf injections. Was warned about them and first cycle kept thinking I won't feel better until they're done. I put the rubbish feeling down to them. However I began to feel better before I had my last one and this time am beginning to feel better today (day 6) ĺast time was day 8. Still got 2 injections to go.
My steroid dose is 4mg twice a day for 2 days. They don't affect my night time sleeping but am unable to rest in the day.
I didn't cold cap and am not mourning the loss of my hair but can't wait for my wig appointment on Friday. My referral got missed so I'm late going. I shaved my hair in the end because I was fed up fishing it out of my mouth!!
I'm feeling quite down today and don't know why argh!!! Xx
Charissecarson
Member

Re: June 2016 starters?

Wooops hit send too early... 😄 Had a thumb spasm.
I did lots of research about it that all said you still will lose lots of hair, about 50% in total which will probably feel disheartening and make you wonder what's the point if you still have to wear a wig but let me tell you... Today at my chemo there was a new lady I hadn't seen before and so I said hi and asked if she was on her first day. She proceeded to tell me that today was her last chemo and she was totally excited it would all be over. I thought she was just starting as she had a whole head of hair! I asked her about her hair and she said that it was 50% thinner. My point being that although you may notice it's thinner, to others, especially those that don't know you you will probably look totally normal and she said it had all been worth it. Seeing someone in real life made me believe far more than any forum that it can work if you can stick with it.

C xx
Sue H-S
Community Champion

Re: June 2016 starters?

Yikes - I take 4 x 2mg for 3 days - no wonder I am 'flying' for a few days, lol.

I have absolutely no side effects from the G csf injections, no bone aching, no flue like symptoms - so it appears it is a very individual thing - as all seems to be with chemo.

Huge thunderstorm on the way - so signing off - do not want mylaptop to blow up!

Smiley Happy 

Hugs

Sue xxx 

Charissecarson
Member

Re: June 2016 starters?

Julie well done for sticking with the cold cap. You probably saw that I didn't manage to and I am happy with that decision but its really hard for people like you that
Anon16
Member

Re: June 2016 starters?

Thanks ladies, I'm ok just never ill except hangovers and at least I know they go in a day.

Back to hair - I didn't cold cap but they said I would lose my hair probably after fec session two so going for wig fitting this weekend in readiness but anyone not cold capped and had two rounds and not needed a wig / scarf etc?

Celebrity Master Chef for me now then thinking about watching The Big C and Me after though haven't seen the first two - anyone else watching bbc1??
Charissecarson
Member

Re: June 2016 starters?

Anon 16, hope your're not feeling too bad.

My feeling was first day worst and better from there on in but I have read that you can feel great the few initial days where you are still taking the drugs you are given to take home then feel a bit worse after you stop them so it goes in waves. I've also been told today that those injections to boost the immune system can make your bones ache and give you flu like symptoms and that will be day 5-10 for me.

C x
Belle
Member

Re: June 2016 starters?

Hi Taran,

 

I had 6mg steroids (3 x 2mg tablets) during the day.  My understanding was you get less if you're on Emend (which I am) because Emend increases the levels of Dexamethasone in the body.  I'm sure you'll be fine.

 

B x

Taran
Member

Re: June 2016 starters?

Thanks Anon16, that's a smaller dose than in pregnancy so fingers crossed I'll at least cope with that ok even if not everything else!!!x
Belle
Member

Re: June 2016 starters?

Hi Tinky and welcome,

 

My first FEC was the 9th so just a few days ahead of you.  I drank loads as well and only had faintly rosé wee once!  I was really nauseous and am hoping that my anti-sickness cocktails gets juggled for the next round.  Totally relate to the hoping they got the wrong person feelings.  Sometimes wonder if it'll ever go?!  

 

Julie - I'm really sorry to hear you're even sicker this time 😞  Can you ring your hot line and ask about more anti-sickness tablets?

 

Much love

 

B x

Anon16
Member

Re: June 2016 starters?

Steroid dose is 2mg tablet
Anon16
Member

Re: June 2016 starters?

That's me also just waiting for them to say they got my test results mixed with someone else's lol.
julie.galea
Member

Re: June 2016 starters?

Hi all

 

2nd treatment down,  definately feeling more sickly then I did after the first one but then I havent really eaten much,  going to nibble on some crackers, cant face ginger biscuits at the minute. 

 

Belle, you are right about the personal touch,  my unit is only small but busy and I know that if the drugs were through a machine I wouldnt always see the staff much, and today there were only 2 nurses in so its nice to see them. (they were quiet today for a change as there had been a few cancellations).

 

Glad it went OK Emma.  Fingers crossed you dont suffer from many side effects, and as everyone else says, you are not a wimp.  you are a strong woman haveing a little glitch. Keeping positive is not always easy. 

 

Bubbles, if you see this,  I cold capped again today but dont think it is beng very successful.  I spoke to the nurse about the hair loss and she says I will probably lose a lot more and suggested I booked in for a wig fitting just in case.  I have booked an appointment for Friday so will see how it goes.  I will admit to haveing a little melt down when I came home and washed my hair and lost a large handful again.  Few tears upstairs when hubby was in the garden.  Stupid really, its only hair but I just couldnt stop myself. 

I would speak to your nurse on your next session and see what she says,  mine did still stay it was worth trying again.

 

Hope everyone else is OK. Take care xxx