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August 2018 Chemo starters

ktk
Member

Re: August 2018 Chemo starters

Oh Georgie, I am sorry you have had a bad experience having you Picc inserted. Still, it will make delivery easier. My hospital gives you a permit for free parking each time you go for treatment. Doesn’t help you find a space though!!

Ladies, if your meds aren’t working phone your helpline and get them changed! You should not be being sick!! Kxx
Member

Re: August 2018 Chemo starters

Georgie,

 

please check with with your chemo unit about the car parking. I know all NHS trust are different but the hospital I am under - North Middlesex doesnot charge for patients undergoing chemo.

 

Worth asking the question!

 

jo x

Member

Re: August 2018 Chemo starters

Thanks for your advice sunflower I have been in contact with work and they are doing me a referral for OT, I copied your message and put in email to my manager as that sounds perfect what you are doing work wise.
Member

Re: August 2018 Chemo starters

Thank you all for your encouragement and understanding.... it helps to have buddies here who 'know!'..... 

 

I will indeed go to the hospital reception desk tomorrow and ask about parking charges!  The number of times we have to go per month is quite considerable isn't it.  

 

Love to you all, and especially to those with poisoning this week 🤢.... 

 

Gee x

Member

Re: August 2018 Chemo starters

Hi Cat

Good luck when you brave the shave, it does seem a bit overwhelming & scary but I did feel better afterwards as if I’d taken some control

Jude x
Member

Re: August 2018 Chemo starters

Hi Subee

Pleased you are feeling better, enjoy the next 10 days until it starts all over again!

Jude x
Member

Re: August 2018 Chemo starters

Hi Georgie

It doesn't seem to be getting any easier for you - will be thinking about you
I’ve got a 6 month parking permit which covers up to 2 cars by registration - it might be worth asking if your hospital does anything like it. This covers me for the hospital for chemo & the hospital (which is a bit nearer) that I go to for blood tests

Take care x

Member

Re: August 2018 Chemo starters

Hi Jude,

Thanks for the advice. I hear you re the SEs. I was prescribed Omeprazole for heartburn and it seems to have worked a treat and Benzydamine for sore mouth and that has helped too. I plan to 'brave the shave' as soon as I see signs of it falling out.....not too long now. 

 

Hi Georgie,

You poor thing, sounds like you've had a right time of it! The PICC line has worked well for me so far so hopefully you will start to get the benefits from it soon.

I was surprised to hear about the hospital car park charges - where I go the car park has a Reg No. recognition system and I have been told that I can give my Reg No. to the reception and they will sort it for me, otherwise I agree it will become very costly! 

 

Hi Subee,

Pleased to hear you are over the worst and feeling better.

 

Xxx

 

 

Member

Re: August 2018 Chemo starters

Hello Georgie / All

It might be worthwhile asking your breast care nurse if your hospital offers concessionary parking for chemo patients. I was told about this by a friend whose mum had cancer treatment and they found out about it by chance. The hospital I'm at don't advertise it but it seems if you ask you get. I now just pay a £1 per visit irrespective of length of visit.

Hope this helps

Sue x
Member

Re: August 2018 Chemo starters

Thankyou, feeling finally normal! Has been a rough 10 days which included an overnight stay in A&E with a raised temperature which was due to injections and had doubled my wbc. Seen oncologist today who was very sympathetic and changing treatment slightly and meds for next cycle. X
Member

Re: August 2018 Chemo starters

Hello all, 

had my PICC line put in today..... eventually 😩. 

 

First time they thought all went well and well and commented on how relaxed I seemed.

Had X-ray but was then called back to the picc room.  It had gone into my neck instead of down into chest and heart area. 

Second and third attempt, still in neck. 

Fourth time around, in place and confirmed by X-ray.  They did say I was rare though... 🙄 Trust me! It is usually quick and painless...... 

 

I now now have a very sore arm, and have to go to the hospital aGAIN tomorrow to check the dressing..... so 4 times for me this week, including chemo on Thursday.  The hospital car park is doing very well; today was £6.90 as was there from 1.15 to 5.15.   Wonder what it will be on a full chemo day?.... 

 

oh dear.... 

but it is nice to come on here and chat to others who know what a picc is, and to see that we all have our various struggles and muddles.  

 

Georgie xxx

Member

Re: August 2018 Chemo starters

Hi Cat

They changed my anti sickness meds & steroids & added in heartburn tablets but not really helped - think it may just be a case of getting through the first couple of days after chemo & just accepting that you will feel shocking 🙁
My wig is fine & comfortable with a wig liner, it doesn’t budge at all & even when it’s windy & blows up you can’t tell it’s a wig. I’ve braved the shave & it is a better fit without a lot of hair
With regard to the neuts - my chemo unit give you a booklet that they fill in every time with your blood results, chemo drugs & medication to take home

Good luck with your visit tomorrow

Jude x
Member

Re: August 2018 Chemo starters

Hi Jo

Your neuts are quite low then especially as you have been having the injections
I’m not sure what the cut off point is on neuts to stop chemo but I think I’d seen on an earlier post that if you are admitted due to an infection they don’t let you out unless they are above 1?
I’ve only had 2 lots of toast but debating some soup & bread!
Hope we all have a good nights sleep

Jude x
Member

Re: August 2018 Chemo starters

Hi lovely ladies,

 

Hope you are having a good day.

 

Jude1962, yes we all seem to be having very similar SEs don't we and like many of you I am hoping that next time round they change the anti sickness so the SEs are not quite so bad. I even ordered sea sickness bands today as heard on another forum that they may help...worth a try!

 

I have a question for anyone who has started to wear a wig. Is a wig liner sufficient or is tape needed to keep it on securely? I will be losing my hair soon and have my wig ready but have visions of going outside and a gust of wind blowing it off....it landing on the neighbours dog who runs off with it...okay over active imagination! Smiley Happy

 

Also, how do you know what your neuts are? Nobody has spoken to me about this but may be that is because I have only had one chemo session so far? I am at the hospital tomorrow for PICC line care so can mention it to them then.

 

Thanks...wishing you all well.

 

Onwards and upwards. 

 

Xxx

 

Member

Re: August 2018 Chemo starters

Jude,

 

4.2 for neuts for starters was good. Mine were 3.2 .

They were 1.54 yesterday so still dropped a fair bit even with injections. 

 

Waht it is the cut off point for not having chemo?

 

I had porridge this morning and just had a cheese roll- so far so good! 

 

Jo

Member

Re: August 2018 Chemo starters

 
Member

Re: August 2018 Chemo starters

Hi Jo

The nausea & sickness is so debilitating, I’ve just managed a bit of toast which I’m hoping stays down

I don’t have to do the wbc injections but I did notice that before the first chemo my neuts were 4.22 & yesterday they were down to 1.07, so will need to be careful next week
A third of the way though but it seems a long haul until the last cycle mid November

Take care

Jude x
Member

Re: August 2018 Chemo starters

Hi Millsy,

 

just a quick message about work. I also want to try and get into work and restore some normality in my life and to think about something else .....but also looking after me while I go through this long tough journey.

 

My work have been great about my work pattern over the next few months. I am basically not working the first week after chemo and then the second week I am doing bits and pieces at home, if I feel up to it. Work basically told me not to come in during the second week as low immunity week. The third week i am aiming to go in for a few hours each day. I did actually feel tired the third week and I was surprised how much it took it out of me.

 

I would of thought an nhs would be pretty good in supporting you through.

You may already know this but as a someone who is going through cancer treatment you do fall under the Equality Act and as such employees do have a duty to make reasonable adjustments to your working life...so bear that in mind! Also pop and see your GP and get them to sign you off but fill in the sections about reasonable adjustments -  work from home and reduced hours when feel able to do so...

Hope this helps.

Good luck

jo x

 

 

Member

Re: August 2018 Chemo starters

Hi Jude,

sorry to hear the drugs didn’t work. 

I was put on another one yesterday and that didn’t work either! I also had 3 bouts of sickness last night.

 

Feel a bit better today and not been sick since 4am, so hoping the 3 different type of anti sickness drugs which I have taken this AM will do the trick. Just feel nauseaous now but munching my way through the ginger biscuits!

 

I have the pleasure of those self injections to do later to boost the white cells.......joy....

 

Anyway, 2 sessions done 😀 4 to go....😀

 

jo

Member

Re: August 2018 Chemo starters

Hi Georgie

Good luck with the picc line!

Sorry to hear that you don’t feel you are getting the suitable response from your oncologist - all we want is some empathy & understanding.

I feel that I’ve been lucky as I have had the suitable responses & support from the beginning

Good luck for your chemo on Thursday

Jude x
Member

Re: August 2018 Chemo starters

Unfortunately the drugs don’t work 🎶
Had very bad heartburn in the night & several bouts of sickness!
Jude x
Member

Re: August 2018 Chemo starters

Hi ladies they called about pic line yesterday and I have delayed it till I need it and I can change my mind if I want so I will see how it goes, thanks for all your advice it really helps 😊 admire the lady who has worked right through I’m on day 6 of chemo and just started to come to life a bit it’s really taken it out of me.  Looks like a nice day today might venture out, have a good day everyone.

Kip Community Champion
Community Champion

Re: August 2018 Chemo starters

Hi Augusters..  been to gp today and gave meds for oral thrush so hopefully will see some improvement soon.  The best bit of advice i had on here is do not suffer in silence!  If you have hard SEs then callcall hot or nurse as they have all sorts of meds to try.  Push if you have too this is hard enough without pajn and sickness!  Big hugs .kip xx 

Member

Re: August 2018 Chemo starters

Hi ladies - hope you are all coping ok

Millsy, multitasker & cat67 - I had similar side effects to you, my breast care nurse contacted the chemo unit & for my 2nd chemo today, they have changed my anti sickness & steroids meds + got a tablet for heartburn & a mouthwash so hopefully I won’t feel as bad - update to follow😂
The company I work for have been great, I’ve got a sick note for the duration of my chemo but can do odd bits from home as & when I feel ok
Hope you start to pick up soon

Jude x
Member

Re: August 2018 Chemo starters

Hi all, 

and Multitasker, yes I have picc going in tomorrow.   Not looking forward to it but am told they numb the arm.  Will be having next chemo on Thursday - like everyone I am wondering what this will be like compared to last time.   Like others, I have not found that the oncologist is very empathetic or even shocked or 'sorry to hear....' about the treatment side effects.  Today I asked her whether she knew about the hospital stay for sepsis, and she said 'of course, but that's quite rare but like the other side effects, is one of those things.....'.    Not impressed. 

I pointed out that I have lost weight since last time, and she said that she might slightly reduce the dose because of this.  

Sometimes I wish they could see us during treatment - or even feel the side effects for half a day - but we must press on mustn't we..... 

 

love to all and and best wishes for fellow chemo-ers this week. 

❤️❤️❤️  G G 

Member

Re: August 2018 Chemo starters

Hi Ladies

 

Sending all my love and best wishes to everyone having chemo this week.

 

So glad to hear you are feeling a bit better this week Georgie Gee. Do you have your Picc fitted this week too?

 

Second EC on Friday for me. Really not looking forward to it after how hideously ill I felt overnight last time I had it. Saw omcologist and have to say he wasnt very empathetic. He said first one sometimes bad bc its the first time for the body and subsequent are better?? - I’ve not heard that from anyone else but bow to his judgement. Hope the nurses might have some suggestions. 

 

The weather looks like it will be a lot cooler than last time so will be curious to see how that affects the nausea in the days after. Hopefully in a good way 👍🏻

 

Good luck ladies 💋💋💋

 

ktk
Member

Re: August 2018 Chemo starters

Hi Millsy, I’m from June thread, so half way through. I have a Picc line and find it no bother at all. I have a Limbo cover for the shower/bath, which keeps it completely dry. I have lovely well fitting covers from Etsy which people think I am wearing as a fashion statement. I live in a rural area so my flush and bloods are done by community nurses at home. I think the benefits outweigh the negatives, for me anyway. Hope that helps. Kx
Member

Re: August 2018 Chemo starters

Hi Millsy,

I have a PICC line too, my first chemo was 11th August so not had it very long but so far so good. It is a bit of a pain keeping it dry during showers and baths but I'm already used to it. And no pain at all. I'm sure I will be glad to have it removed when my chemo finishes after 18 weeks but I think it's worth it.

Good luck!

X

Member

Re: August 2018 Chemo starters

Good morning Millsy
With regard to the PICC, I’ve found it to be a bit of a double edged sword. On the one hand, every time I need chemo, antibiotics, blood tests etc. I’m so thankful that I have it. I’ve watched others struggle with needles and feel so grateful to have a PICC. The major downside for me is the need for weekly flush and dressing change. It means that I cannot avoid the hospital on my good weeks. Also finding well fitting pretty covers has been a pain. I tend to wear long sleeves to hide it. I do miss a long soak in the bath but that’s a treat I’m looking forward to when this is all over, along with a swim. If I was given the choice knowing what I do now, I would have the PICC. 😊
all the best
Jacq x
Member

Re: August 2018 Chemo starters

Morning Mills (from the June thread). My first 4 cycles were EC and so far I've worked all the way through (commuting to Waterloo East daily) albeit on slightly shorter days do I can get s seat on the train. I had 2 days off with a blood clot and Fridays are chemo days but apart from that working has been fine.
Member

Re: August 2018 Chemo starters

Morning ladies I am now day on day 5 of 1st EC chemo, side effects are fatigue, acid indigestion and feeling nauseous, all of them manageable just have to listen to body and rest when it’s telling you to, I managed the pictures last night with the family and fell asleep through the first hour but at least I was there with them.  Waking up at 4-5am and manage to do a few jobs in the kitchen which makes me feel better.  I am due to have a pic line inserted before next chemo but am dreading it as don’t want to have anything attached to me until I really need it, one of my pleasures is having a bath in the evening and don’t want to have the bother or keeping my arm out etc, I was going to discuss with my BCN but wondered if any of you had any thoughts or experiences with this?  Also hoping to work from home as I do a clinical job and not good as my immunity won’t be so good just waiting to hear if I can as do. Not want to stop work altogether on this journey as enjoy it, I know I will have down days where I cannot do as much but hope there will be good days too, any advice on working would be helpful too, I work for oxleas nhs foundation trust just been transferred over so all quite new to me.  Wishing you all a good day and SE’s are kind to you x

Member

Re: August 2018 Chemo starters

Hello lovely ladies,

Have just been catching up on the thread as it's been a while since I posted. You have all been through a lot and are doing amazingly well! Loving the blogs too.

I had my first chemo session (FEC) on 11th August and had a grim 8 days of mega nausea and headaches (a couple of hospital visits for intravenous anti sickness and a change of meds). BUT, I'm out the other side and starting to feel more human again (apart from the mouth ulcers, tummy problems.....but they are a walk in the park in comparison! Smiley Happy)

It's great to read your updates and know that we are walking this path together, slightly different routes but destination the same Smiley Happy

Keep smiling lovely ladies

Xxx

Member

Re: August 2018 Chemo starters

Aww Paulus, 

and every one of you who have been at my side through last week, Thank You! 

I am thankfully feeling better now since coming out of hospital. 

 

Have my 2nd FEC on Thursday, and am not looking forward to it one bit, but having had a good week now and remembering this, is a bit more encouraging that there is some light at the end of the tunnel.  

 

Kip, I am sorry you have these horrible aches and sore mouth etc.  Have been watching you quite carefully to see how T is treating you.... seems so hard that when we go through these SE's, we know we will have to do it 3 or 4 times!.....  I really hope you get the help you need from your team tomorrow. 

 

Georgie xx

Member

Re: August 2018 Chemo starters

Georgie Gee,
I have been thinking about you, as your post on 13 Aug, and your sadness, stayed in my mind. Hoping you are feeling a bit better in yourself, and in spirit. I am not on chemo, and I hope you are doing okay x
Kip Community Champion
Community Champion

Re: August 2018 Chemo starters

Well done another step forwards or
Member

Re: August 2018 Chemo starters

Hi Ladies

Hope you are all ok today

Thanks for all the positive comments on my blog, I do feel it very therapeutic writing it & my friends find it useful as they understand it a lot more

I did brave the shave & feel a lot better for it, now I’m not losing swathes of hair at a time. My head is a little pink & sore but feels better.

The wig looks lovely & makes me feel like me again & does not move at all. The bandana / headwear look ok but people do look at you as if you are ill & thats still with eyebrows & lashes

So deep breathes for 2nd lot of chemo on Monday - we’ve got this ladies

Jude x
Kip Community Champion
Community Champion

Re: August 2018 Chemo starters

Yes people keep telling me my wignlooks so good and suits me more than my old hair and makes me look younger
Member

Re: August 2018 Chemo starters

Thanks for the feedback Kip

I've already got some of the bamboo wig liners as I'd come across them when doing research. The wig I have is almost a perfect colour match to my hair and is in a very similar style and those that have seen photos of me wearing it couldn't tell it was a wig so I guess that gives me some comfort.

Thanks, Sue x
Member

Re: August 2018 Chemo starters

I’ve got round 2 of FEC on Monday- all being well with the bloods. I haven’t heard anything so presume I am good to go.

Hair still, with me but a lot thinner but I ventured into work this week and wore the wig - wanted to get used to it before I lost all my hair. I thought I would try it out whilst I still felt confident and in control. It was therefore  up to decide when the wig came out rather than the treatment deciding when I had to wear it!

I was pleased- a number of people who didn’t know my diagnosis commented on my new hair style and it now feel comfortable to wear.

 

Good luck all x

 

 

Kip Community Champion
Community Champion

Re: August 2018 Chemo starters

Dear SB1610, I am from the June chemo starters, and just had No 4 chemo.   My hair started shedding at day 12 of first FEC cycle and then rapidly ramped up the shedding until day 15 when it was just floating around me all the time, that was the most distressing part I think.  I got it shaved off that day, about Grade 1 I think, that was tough I won't lie, took me a few days to get my head around it, and to be honest will be glad to see some hair again but, once it was gone the tingling, painful head stopped and was so easy to look after.  Have to say some hair coming back by last FEC too!   Not much mind, but its a start.  I have a lovely wig, I do find it a bit hot when the weather is and it did take a while to get used to, to start off I found it felt like wearing a hat in doors but after a while, and definately once all hair gone its so much better.  They fit so well these days my never slips or moves and nobody has ever realised its a wig.  Even the chemo nurse forwarned me that my hair might come out on the T part of my cycle and was so suprised when i whipped my wig of to show her it had lone gone!   Another tip, I have a bamboo wig liner, its small but so soft and makes the wig much more comfortable, I got mine at the wig shop.  What you will find is you get so used to having no hair you may not find you want to wear the wig much, nices hats are good to, but around the house I don't bother with anything, haven't braved outside yet completely bald, but lots of ladies do and feel very happy with it, after all we having to deal with its up to the others out there to not stare!!  You'll get through it, and once the hair is gone thats one less thing to deal with, you quickly cope with it.  If you go onto the June chemo starters thread you can see some photos of us rocking our baldies.. .I suggest you post too, its very therapeutic...oh and of course you can see me on my profile picture here!   Big hugs to you, be strong, xx Kip

Member

Re: August 2018 Chemo starters

Morning all

Jude - loved your blog and you are so brave.

After a few days of scalp tingles but only losing hair as I would do normally it's definitely ramped up today - blond hair on a black bathroom carpet is definitely not a good look. To look at me I don't think the hairloss is particularly noticeable (but not sure how long that may last) and as my scalp isn't particularly sensitive just yet (now that statement could be a jinx) I'm trying to pretend it's not happening and I'm styling my hair as I would do normally. I've got the wig, scarves and hats on standby as I do get that this is inevitable but I'd really like to hang on to it over the weekend just so I can feel like me a little longer.

Obviously I've not got to wig wearing yet but I'm imaging scenarios where it slips / gets knocked or pulled off / or is too hot for me. Am I alone in this paranoia??? Is anyone on here at the wig wearing stage yet that can share their experiences?

Off to get a manicure/pedicure as a treat......

Happy Friday everyone - stay strong and positive

Sue x
Member

Re: August 2018 Chemo starters

Hi Sally

that is so funny -my chemo brain did not engage there at all although it isn't far from the truth. There has been hair everywhere I have gone.....including the loo!!!

 

welcome Millsy to the mad house!!!!

 

A x

Member

Re: August 2018 Chemo starters

Morning ladies

Mills, I've finished my EC and am on to the T. I am cold capping and have kept the vast majority of my hair so far. Keep at it, it's worth it. If you want to know anything I'm usually in the June chemo thread.

Amanda, your post made me laugh as I misread it as you shed when you poo (number 2) Smiley Happy

Sally

Member

Re: August 2018 Chemo starters

Hi ladies new to this website, I’m 46 married with 3 children 2 girls aged 22 and 20 (21 in November really hope I can make her party which is all arranged 😬🙏🏻) I had my first EC chemo yesterday having 4 x 3 weekly then 4 x Docetaxel alongside Pertuzumab and Trastuzumab Emtansine 3 weekly, then Surgery mascetomy on left side with full node clearance I believe, diagnosed mid July IDC grade 2 HER+, ER+ have 3 lumps 1 x 2.5cm and the others in the mm and also in my lymph nodes, wore the cold cap which I didnt find too bad and manageable just made it take 2 hours longer was there for 5 hours in total.  Felt nauseous and heavy headed when got home and no appetite, had an early night slept ok just did lots of pink wees through the night, woke at 5.15 and had some toast and green tea which went down well and tasty which I was glad about because couldn’t even manage toast last night, so see how rest of day goes will probably try to have a little trip out if I can manage it, have a wig appt later which my hairdresser sister is taking me to which is very handy.  Really nice to read your threads and picking up tips along the way and hope I can add to them. Wishing you all the best day possible under circumstances 😊

Member

Re: August 2018 Chemo starters

Hi Jude

Your blog once again is brilliant.

Good luck for your hair appointment today.

I can't tell you how relieved I was for it to go. I think you just get to the stage where it is so annoying and uncomfortable that anything is a welcome relief. There is still shedding happening going to a number 2 but much more manageable and it's nice to wash your hair and rub the scalp without worrying about a handful coming away.

I too am dreading round 2 next Wednesday but do you know what......bring it on! What else can they throw at us?

We will be very strong women after all this!

 

Sending big hugs your way

love Amanda

 

 

Member

Re: August 2018 Chemo starters

The hair loss has stressed me that much that I decided to use it for my next blog - so if you have a spare 2 minutes

https://dancingwithchemo.wordpress.com/2018/08/16/hair-today-gone-tomorrow/

Jude x
Member

Re: August 2018 Chemo starters

Hi Subee

The first week is the worse so hopefully you are coming out of the other side now. It’s surprising how quickly you forget how crap you felt.
If you talk to your breast care nurse or the chemo unit they may be able to change some meds which may help with any specific issues that you had

Sorry but I don’t know anything about the trial that you are on but I’m having 3 x EC & then 3 x T along with herceptin

Take care

Jude x

Member

Re: August 2018 Chemo starters

Hi Amanda

Well done on braving the shave - I’m having mine shaved tomorrow as I can’t bear all the loose hair flying everywhere - fed up of vacuuming!

I’m hoping it’s liberating

Not looking forward to chemo cycle 2 next week...

Jude x
Member

Re: August 2018 Chemo starters

Hi ladies

Hope you are all doing ok

Day 15 for me now and had to go for the number 2 shave this morning as the hair shedding and painful scalp was driving me insane. Its the best decision I could have made as it feels much more comfortable.

Don't be afraid..... it is quite liberating.

A  x

Member

Re: August 2018 Chemo starters

Hi Suneeta,

I’m not on the Optima trial but they did suggest it to me in the early stages but as I had 3 nodes involved it was discounted as I definitely needed chemo.

i am on 6 rounds also - 3x FEC and 3x Tec.

 

i also had lumpectomy and full clearance so similar to your treatment so far. Oh and I’m having radiotherapy, hormone treatment and potential bone strengthening injections? 

The full works I believe!

 

Take care

jo x