October 2017 Chemo Starters

[Sue_SLondon]

Hi ladies, some great tips and tricks here - thank you!  I'm on Day 8 EC (one down, 7 to go) and feeling nearly normal.  I was all stocked up for sickness and diarrhea (such glamour..) and instead got heartburn and constipation.  Both passing now, thank goodness, thanks to bicarb, making a big old nest of pillows to raise my head up at night and Sennakot, which I checked out with the BCN.  She said it was often the smallest things that were the most worrying - how true. I'm still wide awake at 3.30am but no longer noshing in the wee hours - well, not much anyway!  All the best to everyone starting and continuing this week.

[SueW]

I dumped my adult colouring book found it far to boring but got some from the works as they are cheap
I got a Disney, a marvel but best of all a unicorn and fairy one yay 😀 xx

[Reboot]

That’s the best first week advice Cassie, I wish I’d done exactly that!
I switched from NHS to private (using my husband’s work BUPA cover) after the surgery and after my daughter was born, so I don’t think I’m entitled to the wig voucher unfortunately. I may go along for a consultation just to see though. Or I may call Maggie’s to see if they have any advice.

Has anyone heard of or taken part in any Look Good Feel Better courses?

[Patchworkgirl]

.  F

[WhyteFawn]

Yeah Meesh don't overdose on daytime tv thats really not good for anyone. I've been watching films or things on Amazon prime. Got colouring in books and puzzle books to keep me occupied. I've found staring at screens like laptops or tablets make my eyes more tired. So been sticking to old fashioned entertainment.

Cassie x

[Meesh73]

Thank you Whytefawn and SueC, planning on a few days on the sofa and see how I go. Whytefawn the colouring sounds a good idea, a couple of people bought me those adult colouring books a couple of years ago for Xmas and after the initial excitement I'd completely forgotten about them.  Will have to dig them out as Daytime tv is pretty awful. 

[Sue C]

Hi Ladies
Good advice from Cassie. The first week is challenging because of the fatigue. You may not feel unwell, just lethargic, so resign yourself to rest in front of the telly and let others look after you!
Best wishes to all you lovely ladies going through chemo this week.
Sue xx

[WhyteFawn]

Is your mum doing hats to order SueW? I have a form to hand in to get a £70 voucher against a £120 wig but haven't done anything with it yet.

Well done on first chemo Meesh. All I would say about the first week so far in my experience is don't put yourself under pressure to do anything. If you're tired sleep. If you're hungry eat. If you don't feel like getting dressed, don't. Take drugs you've been given when you need them and don't be afraid to call your helpline even if you think it sounds stupid.

This is day 6. Starting to feel more human today. Went out for a walk with the dog and been chilling. Eating almost normally with still some taste differences.

District nurse just phoned to see if I was ok. I said I was fine just watching films and colouring in.

Cassie x

[Meesh73]

Hi SueW also meant to say lovely of your mum to knit you a hat and that's the good thing about having chemo over the winter hats knitted hats don't look out of place! I crochet so made a couple last year never imaging I'd need them for chemo!

[Meesh73]

SueW, I agree. I wasn't really worried about having the chemo (apart from the cold cap as wasn't sure I'd tolerate it as I really am a wimp and if I can do it then anyone can) but that's because everyone has shared their experiences. What worries me more is the next week or so and coping with the side effects! Fingers crossed I can cope, I have lots of good ideas from the forum to help and also know there are others sharing the experience (as much as none of us would like to). You seem very prepared and knowledgable on everything you will be fine next week. Hope your tests all go well.

[SueW]

I think you will have blood test before next chemo to see if you need injections x I know 2 weeks after my first chemo I got to meet my onco before 2nd one
When you lovely ladies provide so much info on your sessions I worry less about my approaching 1st one

[Meesh73]

Thanks SueW, I didn't realise that. Also meant to say they didn't give me any injections so I guess they're going to see how I go with my blood count. They've also given me anti sickness to take before my next session so I won't have to have it through the drip next time. Head just feels a little woozy not sure if that's the cold cap or the chemo!

[SueW]

Well done meesh x
My bc nurses said everyone is entitled to wig voucher regardless of earnings etc
Also wigs for chemo patients are vat free so if you buy from a hair loss shop make sure they take that off the price xx

[Meesh73]

Hi everyone, back from first chemo treatment. All went ok apart from sitting with the cold cap on for about 15 mins before realising it wasn't working! They had to switch machines but after that it was ok. For all those cold capping this week it isn't that bad. The first 5-10 mins are the worst then after that it was ok. I just couldn't talk for those 5-10 mins and concentrated on deep breathing. I took 2 ibuprofen and 2 paracetamol an hour beforehand and I also took a blanket and a scarf as the back of your neck gets quite cold. I also managed to have lunch there which was ok although I did let OH eat the jam sponge and custard. Hope I don't regret it later. Now just relaxing on the couch. 

Whytefawn, I thought I'd have to pay for a wig as I didn't think I'd qualify for one on the NHS, but the oncology dept asked if I wanted a wig consultation which is done through a cancer charity centre located at the hospital and when I went they said I would get a free one. So I'm getting one even though I probably won't wear it all the time. I'll probably be going into work so may want it then.

Good luck for tomorrow Karana and Chaffinch!

[SueW]

My mom came to hospital appointment for blood test this morning and when we got back produced a woolly hat she had knitted me 👍x

[WhyteFawn]

I'm leaning towards scarves and hats. Shops are getting winter hats in now. Fenwick's had some wooly hats that were lined with really soft fleece like material. They weren't cheap but very nice.

[SueW]

I have bought some bandanas from Clare’s accessories they were buy 3 get 3 free but also got some really cheap turban type headwear of ebay about £2 each so got loads of colours to coordinate with different outfits as I know I won’t wear my wig in the house etc x

[SueW]

My wigs are synthetic but I much prefer them to real hair when I was looking as they were lighter when I tried them on and the maintenance is less so thought if I felt a bit crap would I be wanting to style real hair
The eyebrows are fab in the packet not tried them yet as chemo starts 13th do still have my own eyebrows currently. They are made from real hair loads of shape and colour choices been told you wear them for a week take them off clean them and can put them back on and with continuous wear should last about 3 months they were £50 ish can’t remember exactly x

[Sue C]

Hi Ladies

I went with scarves.... wigs just weren't for me. After the initial awkwardness, I got quite used to them. Definitely need one at night because the initial shedding makes quite a mess, and then you need something on to keep warm. If cost is an issue, scarves are much cheaper. And bear in mind that this is only temporary. 4 months after chemo, I had a full head of hair.

Sue xx

[WhyteFawn]

I'm not sure whether to get a wig or not. I'm hoping to get away mostly with hats as it's over winter anyway. I've ordered a sleep cap and a scarf to wear around the house. My sister gets married in March so might need to buy one for that.

Cassie x

[Patchworkgirl]

Ooh stick on eyebrows sound good SueW, are you pleased with them didn't realise you could get them! 

[SueW]

I got 2 wigs and stick on eyebrows for £450 but you should get a nhs voucher toward a wig think the amount depends on health authority xx

[Patchworkgirl]

Oh no Ali49, so sorry to read that!  I am hoping the nausea doesn't revisit me.  I am Day 5.   Was given a good mouthwash by the oncologist, it can be a bit strong but you can dilute it, been using that and my mouth isn't too sore.  When I get out of bed (not felt tired until now and boy has it hit me today) I will look the name up for you if needed.  My left ear still feels watery and painful, had trouble with new second thermometer, honestly me and these thermometers are not friends at the moment I am buying ones with good reviews too lol, awaiting last shot from nurse for white cells today.  Hope the mouth feels less sore as the day wears on.  

[Patchworkgirl]

Brilliant, will try that SueW, not as bad on waking today but not tried to eat anything...did manage some crumble last night oh did enjoy it lol, but the tiredness has finally caught up with me since waking today I keep falling back to sleep and the legs are really aching today!  Have a good day yourself x 

[Patchworkgirl]

Thank you Ali49

[Reboot]

Good morning ladies, sorry I was a little awol this weekend but I’ve really struggled with fatigue since my first FEC last Monday. Saw my consultant yesterday and he’s given me some tablets and adjusted my chemo so I’ll only be on EC for the next two cycles.

My question this morning though is about wigs. How much do they cost? I’m decaying whether or not it’s worth it for the next few months or just embrace the gorgeous scarves out there!

Love to everyone xx

[Ali49]

Thank goodness for the things our mums told us. We will be experts in every remedy going by the end of this - hopefully!! Thats why these forums are soooo helpful. I am just thinking that this time a week ago i barely took a paracetamol! This time thos week my bpdy must be thinking whoa!! Hang on a minute! Hoping everyone jas a good day today. Lots of love xxx

[CK]

Hi SueW
Its helped me when water has tasted awful and wouldnt go down! Mint herbal tea has been good too.x

[SueW]

Ck a little further down the thread my mom swears by bicarbonate too x I had never heard of it perhaps I should listen to my mom more 🤣🤣

[CK]

Patchworkgirl
Have you tried Gaviscon? Or glass of water with half tspn bicarbonate of soda with slice of lemon. It makes you burp which is a release in itself.x

[SueW]

Ali I hope you manage to get plenty of rest today x will be thinking if you x

[Ali49]

A tough night with nausea and very sore gums! Going to have to catch up on sleep today. I am finding the nights to be looong!! Day 7! Xxx

[SueW]

Old wives tale but my mom swears by a teaspoon of bicarbonate in cooked boiled water for trapped wind and hiccups xx

[Ali49]

I get the hiccups too Patchwork. Someone reccomended soda water so that m8ght be worth a try. Hope everyone gets a good nights sleep xxx

[Patchworkgirl]

I tried sucking a couple of mints last night Ali49 but this morning awoke  with heartburn stuck in my back at 3.30 am and it stayed a few hours.  I think I am full of wind, if I eat I start to hiccup, probably after all the sickness.  Isn't it strange about no longer wanting to drink  the tea and coffee.  Tonight I have had a sip of Feverfew Tonic water and that went down okay, half of a small bottle, will see if I pay for it later.  

[Patchworkgirl]

Thank you Meesh73 xx 

[SueW]

Thank you ck will check my local pharmacy xx

[CK]

Sue W
I got mine from the local pharmacy.x

[Sue C]

Thanks Ck x

Don't know if I've mentioned this before.....but I had a craving for sausage sandwiches, round about midnight! Weird.

I remember my chemo nurse said to me at the start.....just eat what you fancy, whenever you can. She said you need to take on the calories, mainly making up for those days when you really don't want much. Fortunately, I didn't suffer from sickness at all. Unfortunately, I carried on eating as if I did need to eat extra! Consequently, every time I went for my weigh in, I just put on more and more weight! Oh well, it was the least of my problems at the time.

Sue xx

[SueW]

Can anyone tell me where to get ginger drops please? X

[Ali49]

Patchwork i cant face tea or coffee either! Have you been sucking sweets?. I think they really help with the nausea.ginger biscuitsxwith milk are good too xx

[Meesh73]

Chin up Patchwork, hopefully things will get better tomorrow. Hope you get to enjoy your beef stew!

[CK]

Good luck Sam and Chaffinch for chemo starting!
Sue C has given you great advice!
You seem prepared and in control. Ive had 2 manageable cycles of EC and it was mostly fatigue and funny taste buds. I had 2 ulcers first cycle but non yet this one!
This cycles appetite has been wanting tomato pasta, mince and tatties, cheese on toast, whereas last one was fish, croissants, milk and shepherds pie. Its really strange how the tast buds change.xx

[Patchworkgirl]

Good luck with all the tests SueW.  I am going for a wig fitting on Thursday afternoon myself.  The other salon I went in only had one longer haired wig to actually try on but they have ordered some more in.  Hair has started to shed more at Day 4 post chemo.  Awful heartburn here (wasn't given anything for this symptom)  seems stuck in my back and still can't eat much, I start to hiccup, so sticking with plain things, though I did manage to make an apple and berry crumble for the family today, then  tried a spoonful and heartburn reared its head so gave up.  Drinks are a problem too, used to love my cups of tea and coffee but can only sip warm water or the  coconut water when my neck swells with the bone injections.  Sleep is eluding me, awake around 2.30 am most nights but don't feel tired in the day strangely.  I am trying a home made beef stew tomorrow, wish me luck probably one spoonful and it is back to the dry cracker.  Can't believe how hard it is to enjoy food or try to eat it.  Best wishes to all 

[SueW]

Good luck ladies for upcoming treatments xxx

[SueW]

Don’t be scared by wig shopping I went expecting to walk out in a diva strop crying however I walked out with 2 wigs as couldn’t decide between them and with a huge smile on my face
I am sort of glad I am signed off for 8 months but missing work and the distraction of work x