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January 2019 chemo starters

Member

Re: January 2019 chemo starters

Hello Helen

 

I'm due a picc line. They couldn't fit it before chemo number 2 (next Tuesday for me) at my hospital and wanted me to come into the hospital during my week 2 of my second EC to have it fitted and I refused as that's the week my wbc drops and I would have felt really anxious having it fitted then so I'm having mine done in week 3 of my cycle before my third EC. I imagine it's harder to bring an appointment forward, rather than put it back, so in your position I would ask for it to be done the week before your next (3rd) chemo. RE: hair, there are lots of things you can do like using oils for your scalp and shampoos that boost hair growth, even minoxidil was mentioned by a lady on here who was cold capping and kept her hair. I posted some suggestions lower down this thread and all are topical, with the exception of biotin supplements of which you should be able to ate 900 iu per day safely. Obviously run by your onc at next appointment. For anyone with sensitive scalps, chillow pillows are great. Can be bought on Ebay/Amazon for under a tenner and keep your head cool at night, just slip in between your pillow and pillow case. 

G
Member

Re: January 2019 chemo starters

Hi LB it isn’t heavy the hospital one, it is a simple light foam but something about it didn’t feel right and it didn’t really mould to me, all in all I stopped wearing it day to day. I had a quick nosey in John Lewis who had nothing and m&s who had basically the same as the hospital one just with a nipple and that too didn’t feel right.
I know some people plan to stay flat however I do intend to have an implant when all this is over so I just accepted not wearing one for now. I know u can get ones made for u etc which I imagine are good but they are expensive, so thought I would see further down the line whether this is something to invest in or not but hoping I won’t have to wait too long after chemo to get recon rolling as long as rads not required.
Then I stumbled upon this wonderful charity which was a game changer. Alas I have a neutral colour (cream!) I can’t believe I was so boring but I must own up to requesting it, don’t know why, you think after everything we are going through, making a brave colour choice for your knocker would be nothing 🤣 it does have lilac stitching though which is a smiley touch!
Anyway here’s to our knitted knockers 🥂(if only it wasn’t day 1 after chemo this could have been a real clink of the glass!) 😘
LB
Member

Re: January 2019 chemo starters

Hi G that's great to hear.  Is the one they gave you at the hospital very heavy - I've heard that they are so that's why I thought I'd get prepared.  What colour is yours? Mine's a lovely torquoise on the front and lilac mix on the back.  I love it.

Hugs x

G
Member

Re: January 2019 chemo starters

Hi LB I ordered mine too and came last week, never thought to post this, good call! Much more comfy than the one I was given at the hospital which for some reason made me ache.
X
LB
Member

Re: January 2019 chemo starters

Have any of you ladies who have had, or like me going to have a mastectomy, heard of knittedknockersuk. They are a charity and volunteers knit a knocker to your size that fits into a bra. I ordered mine when I was told that my treatment plan was to have chemo and then surgery. It arrived today and is absolutely brilliant.
G
Member

Re: January 2019 chemo starters

I would second this. Either try getting it moved again (they can only say no) to before ur next session or definitely move the appointment to nearer the 3rd session on one of your better days, I had mine done 3 days before. Sounds like picc is just as straightforward and I imagine less obvious scarring as I have another wound (on my good chest side 🤬) that will scar although should fade over time I guess.
Either way you have got this, you just don’t always know until in the moment and something gets you through.
Massive hugs xxx
Member

Re: January 2019 chemo starters

Hi Helen,

Just wanted to reassure you about having the PICC line, I had one throughout my chemo and I had no problems at all. It didn't hurt having it inserted or when taken out. It said on my letter that relatives couldn't come in with you, but they let my daghter stay with me, so it might be worth checking. Do you think it might be worth phoning your onc on Monday to see if they could sort you being fitted in before Thursday as it doesn't seem at all fair that they're making you come in the day after you've had chemo. Or if you've already had chemo on Thursday via your vein, can it be dalayed until nearer your 3rd chemo when you're feeling better? I don't know if the procedure's the same in all hospitals, but I had to lie on a bed to have mine fitted which wouldn't be good for you if you're feeling sick.

I don't know if I've already mentioned this, but I wore the travel sickness bands whilst having chemo and for a few days afterwards, so they might be worth a try if you haven't done already xx

G
Member

Re: January 2019 chemo starters

Just realised your name autocorrected from Helen to Humble...or the chemo drugs did it, sorry Hun ☺️
Ask as many questions as you like, we all have/will! I would ask why Picc is being suggested over port when you go as my chemo nurse said she wouldn’t have anything else other than port if she needed chemo as it is the most straightforward and easiest for the patient once in (even showering etc) although I know many have piccs so it maybe just as straightforward etc

Big hug xx
Member

Re: January 2019 chemo starters

Thanks so much G and B74, hearing other people's experiences really helps.
I'll ask on Tuesday, when I go for bloods and to see the consultant, about something to help on Monday week for the picc. As it's an assessment is Friday (Mum is taking me so I think I'm just going to take a bowl and towel and hope for the best, but dreading), I guess they might say a picc is no good, and that I need something else. Again, guess I just have to wait and see wgat happens, and then take what they recommend and work with that - I may be back on here being a nuiscance with nore questions!!
And the hair thing, it's shedding but only in the last 48 hours, so I guess I need to reconcile with that, and wait and see how long I can tolerate it for. I figure you know when you're ready, either because of the amount of shedding, or the discomfort (or both 🙈). Thankfully, the shedding's light and, unlike some areas of my body, I'm sensation-free at the moment. I suppose one or both of those will force me to make my mind up in due course.

I'm so pleased I've found you all - Superwomen in droves - to help me through this. It makes such a lonely journey thst bit easier. Thank you all so much 💞
G
Member

Re: January 2019 chemo starters

Hi Humblebumblebee, I have had a port which is different to a picc or Cath (which I think go in your arm but I didn’t really look into those too much). It goes in my chest but all under the skin so I can shower etc after the wound healed (more bio oil needed!) without covering it up. The left is a little more of a faff I believe as the tube thing needs to attach to the same thing it would if it had been on the right so takes a bit more pushing etc which was uncomfortable but it did its job today. They use a special needle that goes into the port under your skin.
I really feel for you with your veins and having to go through 2 cycles, I just had the one and that was difficult enough without knowing what is coming for the second. If they are not able to change it then I would ring up and ask if there is a sedative you can take at home before you go so at least mentally you are relaxed even if the physical awfulness has to happen. This is what they suggested I could do until they decided the port. I realise not the answer but worth a shot maybe?
xx
B74
Member

Re: January 2019 chemo starters

Hi HelenBumblebee, sorry to hear about the delay with the PICC line, no not something I’d want to have to deal with the day after treatment either. Do you have anyone who could go with you and sit in the queue for you while you lie down in the car? (For example)
With hair - I ummed and ahhed for so many days - should I bite the bullet? Or is it premature and should I hold on as long as possible, despite shedding and discomfort? Finally I decided to do it night before AC2 just because I didn’t want to cope with buzzing/shaving when sick and tired. There’s a big emotional difference between short and buzzed, but it had to happen sometime, now it’s a relief.
Member

Re: January 2019 chemo starters

Meant to thank you for being so lovely too. I thought I was tough enough but I am finding it hard now, and the hug is massively appreciated.
Did you use the cold cap? I'm just starting to notice hair loss yesterday/today, but elswhere seems a lot quicker, so should I assume the cold cap's working? I don't know if I should just get on and shave it off, or if that's unnecessarily drastic when I've only just started to lose it. It isn't hanfuls by any means, just all across my hands when I ran my fingers through it. I've always had long hair, but thought I should get used to having less before Christmas, so I had it cut short. Did you lose that much in a week that you felt you had to do it, or did you just feel you didn't want to wait and see how badly you'd be affected, and just bite the bullet? I don't know whether to do it or sit it out and only worry about whether to do it when it starts to show?
If I've had stinging and prickling elsewhere, should I be expecting the same with the hair on my head?
Member

Re: January 2019 chemo starters

I had my workshop day 2 days before FEC1 and when they assessed my veins, they said straight away that I'd need a picc, but there was no way it could be arranged before my first treatment. I was told it would be a week, that I'd go in on a Friday for an assessment, and then back on the Monday to have it put in, so it was all ready for FEC 2. Like I said, FEC2 is Thursday, and my assessment's Friday, with a view to having it put in on the Monday after. My arm is so painful now, but when I called to ask if I could bring the procedure forward to ensure it was done ahead of FEC2 as I'd been told it would be, I was told if it could be done sooner, then I would have been offered sooner. I got all emotional and had to get off the phone, so Friday it is(and only for assessment), despite the fact I'll be less than 24hrs post treatment and barely able to sit up, let alone get to the hospital and wait in what I've been told is a very busy clinic with long delays. Happy days.

My right arm can't be used due to full axillary clearance, so it's left or nothing. Is yours a picc or a cath? Why is it harder on the left?
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Re: January 2019 chemo starters

Wantolive, yes, totally agree. I was shocked by how quickly I felt all fuzzy after FEC1 2 weeks ago. Coming home, I felt drowsey but, within an hour or so of being home, my head was swimming, and not in a fun way.
G
Member

Re: January 2019 chemo starters

Wow Kip I love both pictures. It’s funny how my bold head is now not bothering me after two days, feel quite free from the worry re will it/won’t it, quite tiring in itself!!! School run this morning was a bit strange as I had a scarf on which looked more obvious than the hat thing I wore yesterday, people did look, as we all would, but not in anyway wrong, more in a wow ok then. I feel like me and our youngest achieved a lot today! I am such a hair person too so quite surprised myself here so if not happened to you ladies then I really hope it doesn’t but if it does, you will manage it I truly promise 💗

Second chemo done today and the port ladies was such a game changer! If anyone having vein issues do ask, the procedure was horrible, not helped because it needed to be on the left due to my lymph nodes in the other arm being removed and it is a more difficult procedure on that side. I also felt really vunerable on the operating table as you aren’t sedated or anything and all I could do was think about stuff and the journey here and where it’s going and had an emotional moment (ok I tell a lie, possibly 75% of the procedure was teary!). They looked after me and my mind obviously needed to do it so hey ho 🤪.
Enjoy your whatever kind of evening is on the cards for you (crisp, non alcoholic ginger beer, nausea tablets...rock and roll!) xx
Kip
Member

Re: January 2019 chemo starters

Ah thanks ladies,  not sure if its smiley and fun or "drugged up to the eyeballs".. but I'll take the compliment.  you'll soon be posting your new mad hairdos...

xxx

 

Member

Re: January 2019 chemo starters

I agree Kip, you look great in both pictures, you have lovely eyes and a smiley sense of fun. 😍
Member

Re: January 2019 chemo starters

Helen
Sorry about you having a trouble with phlebitis. Big hugs. You are very strong lady though. I can totally understand about being emotional saying good bye to your hair. Nothing to say here. Just remember this all will be over soon and we all will have our lives back. X
Member

Re: January 2019 chemo starters

Hi Kip
Your hair look amazing!! Honestly and you look so healthy!!!!!! Iam constantly covering my hair if not wig it's a scarf when I am home. So nobody see me without hair. ((
Kip
Member

Re: January 2019 chemo starters

 

 

hi January Chemo Campers!   I've just been reading through your latest posts (hope you don't mind) and it really brought tears to my eyes as you all deal with the hair loss.  I was transported straight back to that day when I braved the shave.  The head pain when its shedding, the prickleness when laying on your pillow (that goes once all the hair has), the worry and fear for your children.. bless you all... I remember it so well (and it was only a few months back).   Had to smile at the stories of hair disappearing "elsewhere".. I remember that too... mine fell out in my knickers virtually all at once... what a fright!   In terms of using something to encourage hair back... I use the Lush hair shampoo bar called "new"... its a little red circle thing.  I began using it when the first hairs starting showing and (also rubbed it into where my eyebrows once were).  I think I said before my hair began growing during the last 2 x T chemos, 4 months since the end of my chemo and I am having a little trim next week to remove the startings of a lovely mullet!  If I can I'll upload some photos. 
hang in there girls... you are doing wonderfully...this will make you smile.. the first place i remember seeing new hair growth was my toes....Bloody Cancer!!!

Kip.. heres my before and afters (and the after one was a month or so ago!)..  Excuse the eye bags.. just another joy of BCGrey hair.JPG

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