Anxious about starting FEC in Jan :(

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Well done with the singing Cheryl! I love singing the Fauré. I sang it in the Albert Hall years ago at a huge choir day, conducted by David Willcocks. We also sang it in church last year as a mini concert. It isn’t too hard (relatively speaking - try Walton’s Gloria - eek!) and I’ve found it’s got some really memorable harmonies so you should be fine with it.

Last Easter we sang Allegri’s Miserere on Good Friday and a couple of years before that we did Stainer’s Crucifixion. Not bad for a village church choir of 24 on a good day, ranging in age from 7 to late 80s! DH is nothing if not adventurous!!!

A BCC singing group! We could accompany the Inbetweeners magic carpet picnics! We might have to co-opt a few men though.

So far no particular side effects from yesterday. I was very tired last night and I feel a little bit odd but nothing really specific and no nausea as yet. I’ve popped four different anti sickness pills this morning but I’ve been told I can knock off two of them if I’m feeling OK. Legs aching a bit but I was very tensed up yesterday so it’s probably that.

So far so good (if that isn’t tempting fate), but I know some people have said their SEs build up through the cycles, so we’ll see.

Jane xxx

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Alto, I was probably in the RAH with you!! Just don’t mention Taverner (ok it’s great if the choir gets it RIGHT), or Poulenc !!!

Sooo very glad the SEs are being kind to you, long may it last Pxxxx

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I already know the Fauré, but my OH loves music with really complex, not to say weird, harmonies and rhythms. It’s a great distraction, though! (Kodaly wrote some real killers for a 4-part women’s choir, did them at uni.)

I’m glad you’re not having trouble with the SEs so far. I hope the legs stop aching.

Cheryl

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I am definitely shedding hair. Nothing dramatic, but more hairs than usual are turning up on flat surfaces, and it’s not the cat.

Cheryl

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Ah poor you Cheryl i am sure i wont be far behind you i cant stop scratching tonight :frowning:
How many days has it taken from your chemo date???
Sending you hugs
Be bald and proud!!!
Kaz xx

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Big wodge of hair in the shower this morning despite gentle washing and rinsing. At least there are no obvious bare patches yet. This is day 18 for me, so the shedding started yesterday, 17, and 18 is right on schedule according to some.

I’m going out tonight, so if there are bald patches I’ll wear a scarf. I was supposed to choose the wig yesterday, but had to cancel. Sadly, this was due to the funeral of a fellow choir member who died of pancreatic cancer in her mid-50s. Pancreatic cancer is almost never diagnosed in time for successful treatment, unfortunately.

So what’s a bit of baldness, anyhow?

Cheryl

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Sorry to hear about your friend Cheryl. I did get my wig yesterday and after a while 30 mins I got a headache and they are quite snug so I don’t know how I’ll get on with it. It might be like wearing in a new pair of shoes. My clipped hair is hurting my head so that doesn’t help. I think it’ll have to all go later! Like you said, what’s a bit of baldness. It’s makes us even more special lol x

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… day 10 and itchy, family laughed at me this morning - I tend to put my glasses on top of my head, and I’m worried they’re going to just slide off when I’m bald!! Arrgh!
Pxxx

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I know some people prefer hats and scarves to wigs. Having short hair for a few weeks has reminded me why I let my hair grow out after keeping it short for about a year when I was 19 or 20.

I suppose a wig might have to start off tight, as you say like new shoes, so that it doesn’t wind up too loose and slip.

We’ll see. I’ve got some cheap cotton caps; not particularly attractive, but I can tie my existing scarves over them, and I’ve got hats to wear out of doors in the cold.

My scalp still feels itchy or prickly at times, but maybe it will be better after everything goes. I thought I would wash and moisturise it like my face then.

Good luck, I hope the discomfort doesn’t last too long.

Cheryl

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I hadn’t even thought of that as an SE! Maybe it’s a good thing I’m so nearsighted I have to wear mine all the time.

Cheryl

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Peachez you and me both… scratch , scratch its funny really i dont know about you but i am denial really, My 13 year old keeps saying Dont worry mum i dont think you are going to loose your hair!!! Awww bless him. I hope he is correct :-0 OH why am i soooo bothered about loosing my hair???
Cheryl hang in there you sound a lot stronger than me.
Oh does anybody have a really strange mouth like sandpaper???
Kaz xx

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My hair has always been baby fine, rather thin, and very straight, so in more than one way I don’t have as much to lose as some of you. As for being strong, it may be different when I look in the mirror and a balding stranger looks back, and I will definitely want some virtual hand-holding, and maybe some physical hand-holding or a sedative on Thursday when I get the PICC line.

Is your mouth sore, or just dry? Did you get a supply of mouthwash?

Take care, Kaz.

Cheryl

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Kazza My mouth feels like it has rough patches inside. It’s not sore though. I’ve been using mouthwash twice a day. I know what you mean about the hair. I am feeling a bit lost without mine. Cheryl, I had a picc put in and was anxious before I went. I had to wait half an hour for the picc team and I was ready to head for the door. It was PAINLESS honestly. Not even sore afterwards. You get a local anaeths and the nurse chats to you and it’s done in no time. I was so glad of it last weekend in hospital with bloods and fluids going in and out. I’m the biggest baby ever so it will be a breeze. x

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Kaz, me too, like Janipi says, rough dry patches on my gums. Sore lips. Loads of vaseline for those. Using Biotene toothpaste from Boots and Difflam mouthwash before bed.

Good luck with the PICC line on thursday Cheryl

P xxx

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Hey Ladies
My mouth is not sore just like you have all said rough patches, my mother in law got me some biodene toothpaste today and i have just ordered it in a mouthwash version to, so i am hoping it will get better once i start using them.
Cheryl no the hosp did not give me a supply of mouthwash, i have already spent a small fortune trying different mouthwashes!
Can i be rude and ask why you are having a picc line put in, sorry i just wondered if you had to ask for one or if they automatically give you one?? When i had my chemo there was a lady opposite me having one inserted and she honestly never even winced, she told me afterwards that she never felt a thing. I hope that will be the same for you on Thursday, i will be thinking of you
Kaz xx

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There are two reasons I’m getting the PICC line. First, I’ve had an axillary clearance, so they can only use one arm. Second, they say my veins don’t look able to take the full course. I should say I’ve never had any problems with injections, blood samples or the like, but I am over 60 and maybe that makes a difference. The danger is damaged veins.

As I understand it, if anyone starts to get problems with their veins during treatment, one of these semi-permanent lines will be recommended.

I’m sure I’m just being squeamish about this, just as I was dreadfully anxious about the first FEC session, but the thought makes me cringe. A friend had a Hickman line if that’s the right term, the one that’s put in the chest when she had adult leukemia, and she has promised me that it’s painless as well. Perhaps it’s just that it seems more like being seriously ill, and that’s not how I want to think of myself.

Anyhow, thanks for the kind thoughts, and I will report honestly on the experience.

Cheryl

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Sorry Kaz, I meant to say that Difflam is often prescribed; maybe you should report your mouth problems and ask if they can prescribe something so you don’t have to shell out any more. At least ask about it at your next appointment on the principle of prevention being better than cure.

Cheryl

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Thanks Cheryl i will definitely mention it when i go for my next fec… Oh and just for the record i am such a baby with injections, I started crying when they where about to put the cannula in. So you are not on your own
Kaz x

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Kaz, I asked for a PICC line to be put in before I started chemo. I’m not the least worried about needles for blood samples etc, but I do detest canulas, so that was part of my reason. Also, I too had anc, so can only use right arm for any future blood tests etc, and I wanted to take care of the veins in that arm. The E in FEC can really screw around with your veins - it can cause hardening etc, and a lot of people find that they end up with damaged veins, or are very limited in the veins that can be used to give blood - and I just felt I would rather avoid that situation altogether.

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Oops, pressed wrong button before I’d finished!

I spoke to the nurse about it at my pre-chemo appointment, and she also had a look at my arm, and said she’d be happier if I had a PICC, as I don’t have particularly prominent veins - and those that are near the surface tend to duck for cover at the sight of a white coat.

My PICC was put in on the same day I started chemo, PICC went in at 9am, chemo began at 10.30am. It was straightforward and painless - and apart from itching a bit since, the PICC itself has been fine. The only problems I’ve had have been the adhesive dressings - I seem to react to all of them, so removing them is not always pleasant, to say the least! My OH was shown how to flush it and clean it, so I don’t even have to wait for district nurse each week.

The only issue I had, has proved to be a non-issue… really. My OH flushes it on a Friday, and this friday we forgot until the evening. Well, you’re supposed to draw off about 5ml of blood through the PICC before flushing it through with saline, and we’ve never had a problem doing that - but this Friday we couldn’t get any blood out at all, so I panicked, thinking there might be a clot or something, and rang the chemo ward. They told me to pop on over, so I drove up Friday night about 9ish, and they had a look. Fluids would go in quite easily, but no blood out, and apparently this is very common - if the line moves inside the vein, the open end can rest against the vein wall, so when you try to draw anything out, it seals itself against the wall, but when you try to put fluid in, that’s fine. So, I may not be able to have bloods taken from it, unless it moves again, but chemo will be fine.

Just thought I’d share that in case anyone else came up against the same thing. Also, I was told that if there were a clot at any point, they can inject a clot busting drug, so line would not have to be removed for that. The only time a PICC has to come out is if there is an infection in it, or if it falls out accidentally… which is not too likely!

So, in my experience, anyone thinking of having a PICC should go for it. It is a bit of a pain when showering - but I’ve bought a waterproof cover called a limbo sleeve, which makes life much easier.

Sophie xx