June 2017 starters

[Skells]

My hair started coming out last night so I've shaved it all off this morning. I got my toddler to help so she wasn't freaked out when she saw it!

Off into town to buy my big hat!

Hugs to you all xxx

[Argymargy]

Hello. A decent wig should not blow off in the wind!  I have one although I don't wear it very often as I like the baldy look.  It has little adjusters inside a bit like bra straps so that you can loosen/tighten it to suit your head.  It started off pretty tight but now I've "worn it in" and it's pretty comfortable.  I wore it on the sea front in a pretty strong wind and I had no worries about it blowing off.

[Ilovemarsbars]

Morning everyone. This is day three post first FEC treatment for me. So far I don't feel to bad. Maybe a bit like a hangover but not horrible I'm just hoping this is how it stays. I have emend which I've heard many people rave about. Also omdasnetron and steroids and some stand by anti sick pills.

Shaving my head was great. It hasn't bothered me at all and if anything has been liberating. My wig should be ready to collect next week so that will be a giggle if nothing else.

I'm having six FEC cycles. My oncologist decided to remove the T bit to help give my fertility the best chance. Has anyone else got this.

Xx

[Skells]

Welcome to the group velvet. I hope you find it supportive.

Someone was asking about what everyone is doing re wigs and scarves so here's my thoughts.

I've been thinking about getting a big hat instead of scarves / wigs. I'm thinking a bit Ascot style hat. It's hard to tell what it would look like as I still have my hair. I'm also not sure if it would give enough sun protection. I have bought some fashion wigs (pink and purple ones). I wanted to go for wigs that didn't look realistic because I don't really want to cover up. For me it would feel like I was wearing a wig because I'm embarrassed or ashamed of having cancer and going through treatment. I would rather brazen it out but realise that's not for everyone. My daughter is young enough that she'll be accepting of whatever I choose. Sorry, a bit of a long ramble there.

[Velvet]

Hi everyone,

I hope you don't mind me joining you as a late June 2017 starter.

This is my first post but I've been reading around the forum for a few weeks before finally taking the plunge.

I will be starting chemo on 27 June doing 3 x FEC and 3 x FEC-T (same as fionamaunder so we will be making the journey alongside each other).

This website has been such a support and I wanted to say thank you to everyone for your honesty, advice and kindness. You are all truly amazing.

Velvet

[Lynhq27]

Hiya fellow fighters. I had first FEC-T on Thursday & don't feel too bad so far thankfully. Tried cool cap and was bearable, even took my mind off  the injection end of the business.  Was meant to do the 1st self inject today but wimped out & went for my daughter to do it lol. Will try and do better tomorrow. 

Good to see positive messages on here. good luck and well done all of you.

Lyn xx

[Daffodil54]

Hi everyone. Day 5 post first ec. Feeling much better. Second injection self administered. Will see how the next week goes. Constipation so eating prunes and liquorice. 

[Nixons3]

Wow didn't realise wigs could come off so easily! 😳

 I wasn't going to but tried cold cap and it wasn't pleasant but manageable. Same as you did it mainly for kids and not to regret not trying really. Not sure if I'll manage the whole lot but will see. Hate not washing my hair though!! X

[fionamaunder]

Afternoon ladies! Currently lying in the back garden sunning myself viol! About to start chemo on 27 June so a late June starter.  Doing 3 x FEC and 3 x FEC-T. Have the choice of using cold cap, so I'm gonna try it for my daughters sake as she is distraught at the fact I will lose my hair.  Also have chemo pre counselling on Monday then MUGA scan the following day. 

[Anniej]

Hi, just jumping in here to try to help. I'm from May thread, so a month ahead.

Re nausea, my hospital put me on Emend which is wonderful. I've had no symptoms to speak of. I've also been given buckets of Metaclopramide Hydrochloride to take if feel sickly . Dont know what you've been prescribed , but ginger biccies and ginger tea are definitely good.

Re wig and wind, I can tell you from experience that it doesn't stay on in the wind! Even worse when you put a little hat over it!! Mine acted like a propeller on a helicopter and took off, wig and all!😱. Now wearing cute Fairtrade head squares from the Macmillan shop. They showed me how to tie them so you get sweet little bunches, or braids over top. Very cool in this heat, very inexpensive and can coordinate with outfits. 😄 

Hope this helps, ladies.

[Abulafia]

So well done on shaving your hair. I'm still clinging on to mine. It's so fine and flat anyway, a wig will probably look tons better.

How do you stop a wig from falling off in the wind? I know that's probably a silly question, but something that intrigues me?

[Ilovemarsbars]

Hi everyone. Hope I can jump on the bandwagon here. Had my first FEC today. So far feeling hungover. Was meant to have it yesterday but had to wait because my bloods were abnormal. Doctor thinks it's the gabapentin I take for the nerve pain following mx so we went ahead today and just keeping an eye on things.

Absolutely petrified of being sick. Got ginger capsules to. Will try anything.

I let my son shave my head on Monday so that's already gone. I couldn't let cancervtake control of that to so I did it while the decision was still mine.

Xx

[Nixons3]

Hope you get through it smoothly Tripletmum.
Have just ordered some Manuka honey thanks for the tip! This chemo business is expensive and time consuming!
Trying to drink lots. Feel ok butbspaced out.
Yes Ali I'm the same with my boys re the wig. we will have to see what happens x

[Tripletmum]

Just finished my first chemotherapy and survived to tell the tale!!! Feel huge relief that the first one is over! The worst bit was getting the cannula in!! Time to rest now and see how the next few days go.

Thanks for the top tips on mouthwash.

Also now have the dates in for my remaining 3 sessions - so gives me an end date to aim at firmly.

Love to all xxx

[Anniej]

Hi, I'm a month ahead of you, Ali. I on EC-T which is quite harsh on the body, BUT, no mouth ulcers. I take one teaspoon of Manuka honey 25+ every day. Get it from Holland and Barrett in the half price sale as it is expensive.  I also use Aloe Vera toothpaste and the mouthwash from the Onco. So far so good and Im halfway now. Hope this helps. Good luck. 🍀X

[AliOG]

Yes, my daughter is concerned about me losing my hair too so I might consider it for her sake. We'll see.

Glad you all seem to be on top of things at the moment but, if things get difficult, don't be afraid to tell us. That's what we're here for! 

Good tip tip about the prescriptions, by the way!

x

[Abulafia]

Thanks Jintz. x

Okay, things I learned today..

Throat got so sore could hardly swallow. Called triage nurse, thing to look out for is temperature and ability to eat.

Told me please to call GP. Got back within hour and prescribed antibiotics and Nistatin.

Relief was almost immediate. So glad I made the effort rather than struggling on.

Got picc line cleaned and changed. District Nurse was amazing.

Oh, and none of us should be paying prescription fees. The pharmacy will give a form to fill out.

All in all good day. x❤

[Nixons3]

Hi Ali I organised a wig as my kids are a little apprehensive about this all and I didn't want to make them anymore unhappy. Not sure if it's better to do it with less hair though? I did have my fairly long hair cut shorter though x

[Nixons3]

Thanks everyone for the warm welcome. Just finishing my first treatment. Realise it'll hit me sometime but so far not as bad as I feared. Even the cold cap was not too awful. Best of luck to you all! X

[Daffodil54]

Hi all. Everyone seems to be doing well. I am day 4 post chemo and not feeling too bad. Had to administer my first injection today. Not too difficult. So far, coping. 

Best of luck to all starters.

[AliOG]

Morning ladies and welcome to Nixon. I hope your first treatment goes well today. We'll all be thinking about you. I've got my first chemo Amazon package arriving today - have ordered shampoo, mouthwash and head scarves. I'm going to have to start stepping away from the computer soon as this situation is starting to cost me a fortune! 

Been chatting to the the ladies on the May thread about wigs. Curious to know what you have all done so far (if anything). I was going to try and manage with hats and scarves but now I'm not so sure. Have strong suspicion I'll look ridiculous in a wig xx

[Jintz]

Hi Abulifelia,
Hope you are feeling a bit better. My treatment is on a Wednesday and I go in on a Monday to have my bloods done. They should give you a date. I's your treatment every three weeks ?
Jintz

[Jintz]

Hi Nixon,
Welcome, when I had my Pic fitted I also found it uncomfortable. I was given a little heart pillow when I went in for my lumpectomy and found sleering with that under my arm was less uncomfortable.
Good luck.
Jintz

[Abulafia]

Hi Nixon. Welcome. Glad you are here.

Wandestrong, things sound good. I bought packs of Cranberry Juice, not my usual drink of choice but with ice, very welcoming for sore throat.

Skells, sounds like work are being more understanding. Hope you don't do too much. Body needs all the rest it can get, among the exercise and work.

My throat is still like a razor blade, but can live with it. Got out on the bike yesterday for 5 minutes...was so nice.

I've also developed a liking for warm stodgy chips, and spinach pasta and grated cheese. Like being pregnant again.

I think I might change to plastic cutlery also. Metalic taste on usual stuff quite overpowering.

It's a beautiful day out there today. Hope everyone gets to enjoy it a bit. xxx❤❤❤

[Wandestrong]

Welcome Nixons3 and all the best for your first session. I had my first FEC (yours with the 5FU added) at the start of the month and after a few crappy days, I'm feeling back to normal and ready for the next cycle on Thursday. Make sure you're well hydrated before the session and in the days after to help flush the drugs through and prevent bladder irritation (which is caused by the Cyclophosphamide). Having a port or line already will make things so much smoother and hopefully you won't have to spend too long at the session.

Feel free to let us know how you get on and any advise regarding managing side effects.

Wande x

[Nixons3]

Hi  Is it possible to join please? I am due to start my chemo tomorrow 4 x EC then 4 x Tax. Had my Port fitted yesterday and feels a little uncomfortable. Thanks 😊

[Skells]

Thanks misyangel

I met with my boss today and said that each cycle I won't be doing anything for the first week and a half as a minimum. I also said that each cycle is going to get harder so I'll be working less. He seemed to think it would get easier as your system gets used to the drugs! I would consider going on sick leave but I'm worried about getting paid. I wasn't expecting to feel so bad with treatment so I planned to work when I felt able. I feel better after chatting to him today as I feel he has a better idea of how much work I'll be able to do.

My scalp has felt quite sore today so thinking my hair might be about to come out. Or it could be my toddler yanking at it yesterday!

[Abulafia]

Thanks Skells.

Very helpful. x

[misyangel]

Hi Skells,

Just jumping in from May thread.  You will feel tired after each treatment as you have nothing in your blood so everything is an extra effort.  I can't believe you are still working there is no way I could work through the treatment and for your work colleagues to not wish you well is not nice at all,  I had only been in my temping job for 2 months and they were so concerned before I went off work and have been in contact with me constantly to check I am ok.  I would seriously consider going on the sick from work until your treatment finishes and you can concentrate on getting yourself well.  Plus you have to be so careful of infection

Sending big hugs to you.  xxx

[Skells]

Abulafia, I had a blood test the day before chemo. I think they need to check white blood cell count as if it's too low they'll postpone the treatment. I'm booked in to have picc line dressed each week at my Dr surgery. They take blood while changing picc line.

[AliOG]

Hi everybody,

Sounds like you're all doing really well so far! You all have a lot to be proud of so as you go on this journey so try and remember that when you feel exhausted. 

Skells, you're trying to do this and carry on working?! I can't imagine how tough that must be. Can't work give you a break, even for the first week or so? I'm still struggling to get myself dressed before 12 and I haven't had treatment yet! You must be a warrior!

They haven't told me about a picc line. Perhaps I need to enquire....

Thanks for the tips on mouth wash too. Will get some ordered, I think.

Really undecided about the cold cap but have had lots of advice from the lovely ladies on the May monthly starters group so will give it some more thought. 

Daughter has has returned from school with an apology and a sheepish look and a few tears. Guess this is hard on us all x

[Abulafia]

Skells, hope you can slow down, and maybe take time off work. I still have a sore throat. Parecetomol and ibuprofen are helping, and I was given a mouthwash.

No temperature, so good.

My boy comes home from.university this week coming. Exams finished so I felt it was right time to tell him.

When is there a right time? Ugh.

Anyway. Like Skells, feel very tired.

Does anyone know when first blood test is done? I am seeing District Nurse to clean PICC line tomorrow, and not sure if they want blood now (day7) or before next cycle (day 21)?

Any advise appreciated.

[MJK]

Just popping in from the May thread to say hi. I had second FEC today. If you're starting tomorrow then drink lots of water today, tomorrow and Saturday as it helps. X

[Jintz]

Hi AliOG,

It is definitely the fear of the unknown. I had a huge melt down too but then decoded that instead of panicking I would take it as it comes. I try not to read much up about it, rather deal with it when I arrive and that has helped me.

I am at Frimley Park and the team is fantastic.
This group is great too.

I have heard that ginger candy and custard are great for mouth ulcers. I was given mouth wash from the hospital.

I had a PICC fitted last Friday and it was pretty plain sailing. Once again it is fear of the unknown but it is great in that once its there its there and you not having needles stuck in you I hope all goes well.

Good luck hun and keep us posted.

[Skells]

Hi Alice,

I'm on day 12 of my first cycle. I've had some mouth pain but no actual ulcers yet. My chemo team recommended alcohol free mouthwash.

I've been feeling much worse than I expected. I've been tired every day and found it hard to get the energy to play with my little girl. I had a few fainting fits last week and went to Dr but they couldn't find anything wrong. Just another side effect to deal with.

I've been trying to continue at work but wish I hadn't. It's hard enough without worrying about deadlines. I'm also a bit upset that no one at work had reached out to wish me well with treatment. Maybe I'm expecting too much from work colleagues.

I didn't have the cool cap but haven't noticed any hair loss yet. I've heard its around day 12 so expecting it to start to thin any day now.

[AliOG]

Hi Tripletmum, I start on June 26th. Have my pre assessment thingy on 23rd. Told key people at work yesterday that I was going to be off for many more months to come and now feel as if at least I've got a chance to get organised before it all kicks off. 

Ilovemarsbars, welcome to the thread! I'm sure you'll find the support on here very helpful. I know I do.

To the rest of you who have already started, your posts are so useful. I know it's not going to be plain sailing for any of us but to know that it's manageable is a big help to those of us who haven't got going yet.

So my update is that I went to the GP yesterday to tell her I'm really struggling with anxiety. As predicted she said, I'm not surprised and didn't prescribe me anything. She did, however, give me the name of a charity in the centre of my city that provides cancer support which is not attached to the hospital. I've got an appointment to see them next week which I'm hoping will help. I then spent the afternoon internet shopping for Paxman shampoo, conditioner, alchohol free deodorant and head scarves. It all made it feel a bit too real for words but I went out with the dog and calmed down again. This morning I had a major meltdown before my daughter went off to school and spent the next 30 minutes blubbing. I guess it's the fear of the unknown that's proving to be a bit destabilising at the moment. 

Anyway, sorry for the long post but wanted to touch base with you all.

Quick question: sore mouth, ulcers etc. Has that happened to any of you yet and do the hospital give you anything for it? Just wondering if I should buy something in beforehand.

Alice x

[Abulafia]

Hi all.

Now day 6 of FEC T. Sleeping lots, and doing exercise. Got sore throat, but they give you a mouth wash which helps.

Been using glycerine supp for constipation.

Still manageable. Just going with body.

[Lynhq27]

Hi Ilovemarsbars (great name by he way)

I am starting FEC-T tomorrow aswell. Yes it is a bit scary but we'll get through it just like many others on here. I find the info and support is good. This time tomorrow you and I will be able to tell others it wasn't as bad as we expected.

Lyn   x

[Ilovemarsbars]

Hello everyone. I'd like to join this thread please .first FEC tomorrow and feeling very nervous. 😞

[Jintz]

Hi Triplemum ,
It was not bad at all. So far so good. Hope it stays like that.
All the best to you too
Jintz

[Daffodil54]

Most centres offer relaxation classes. Bloods taken before each treatment. My appointment lasted over 4 hours but as the first treatment, I had to answer questions, have the cannula inserted and the cold cap adds 2hours over and above. The administration of the drugs took about 30 minutes. Allow plenty of time but relax as everyone is experienced. I am getting my PICC line inserted the day before my next treatment.

Big hugs. We are all in this together. x

[Tripletmum]

AliOG when do you start? I have had anxiety as well but have been going for really long walks to try to get a grip of myself!

Found out today my treatment starts on Friday afternoon so not too long to wait now. Had my blood taken today - I assume that happens prior to every cycle. Has anyone had a Picc fitted or have cannula' just been used? Also how long has it taken - the hospital said expect to be in for 5hrs which horrified me - is it really that long?!?

Lots of love to everyone xxx

[AliOG]

That's great news. I'm glad you're feeling a bit better now the meds have kicked in. 

I went to to see my GP today as the anxiety is starting to really get to me. She didn't give me anything for it though which is probably best. I need to try and sort my head out and get some more exercise before treatment starts. Good weather, please stay around! X

[Daffodil54]

Cold cap only bad for a few minutes. Got used to it quite quickly. Nausea started during the night. Quite a bit better after meds now. Sun is shining. Pleased to have first treatment done.

[AliOG]

Well done, Daffodil54. That must feel like a huge relief to get the first one out of the way. Interested to hear your experiences of the cold cap. I'm going to try it but I really suffer with the cold and also with headaches so I'll probably wimp out straight away. Good luck with the next few days. Hope the sun is shining where you are x

[Daffodil54]

First chemo done!! Cold cap not too bad. Will see how the next few days go. One step at a time.

[Tripletmum]

Good luck tomorrow Jintz - please keep us posted. And think tomorrow you will be one huge step closer to the end of this journey
Xxx

[Jintz]

Good luck Triplemum, I'll let you know how it goes tomorrow.
Take care x

[Tripletmum]

Just booked to have my long hair cut off next Thursday!!! Have decided to go for a proactive 'pixie' cut and then when it falls out it will hopefully be less traumatic (here's hoping). Have also ordered some turban/scarf things to cover the bald! Xxx

[Jintz]

Hi Wandestrong,
I'm having Docetaxel and Cyclophosphamide. 8.30am tomorrow. My daughter arrives from middle east tomorrow night so that's something to look forward to !