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August 2018 Chemo starters

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Re: August 2018 Chemo starters

Hi everyone, somehow I seem to have started a new thread! Not really sure what I am doing! Will try and delete it.
Thanks for all your encouragement, definitely one cycle at a time. I braved the shave last night as my hair was coming out in handfuls and my head was so painful. Once shaved the pain went. Now rocking the scarves.
Have a good weekend all. X
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Re: August 2018 Chemo starters

Hi Ladies

I do agree that the hair loss is one of the biggest things & very hard to come to terms with along with all the nasty side effects
I’m not feeling too bad today other than being really tired & flat - I don’t know if it’s because I finished the steroids yesterday but feel very deflated
Made myself go for a walk even though it was raining on & off as well as being cool but it blew away some cobwebs

Hope you are all coping ok & sleep well

Jude x
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Re: August 2018 Chemo starters

Hi all you Lovely Ladies,

 

Just catching up after a few days...

 

Kip - I hope you are feeling better and are home very soon.

 

KtK - Sounds like I am on a similar path to you, 3 cycles of FEC and then 9 weeks of T (I will also be having Herceptin). Pleased to hear you are getting on so well!

 

AMB67 - Loving the Sigourney Weaver reference, made me smile....especially as I shaved my hair this afternoon! 

 

SB1610 - Totally understand where you're at with the hair loss thing. I took a decision to shave mine today after the very first signs of it coming out last night. Not easy but I felt better afterwards. We are all different and should do what feels right at the time. I have the same fears about wig blowing off but will test drive the new wig tomorrow, first stop will be the hair salon to get the fringe chopped.

 

JacB - I washed my wig yesterday (decided to wash it before wearing it for the first time), I was a bit nervous but it looks exactly the same as it did before I washed it - result! And it's a helluva lot quicker than doing my own hair…....every cloud :-)

 

Georgie - Good news about the PICC line and I have my fingers crossed that you get some positive news about the parking....sooo frustrating.

 

I hope you all have a good few days and find time to relax and enjoy the BH weekend

Stay strong….

Cat x

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Re: August 2018 Chemo starters

Hello

Kip and Jacq - thanks for your support - I do know I'll come around to it and that I probably just need a bit more time - on the positive - sleep cap off and no bald spots today 🙌

I know this is just passing thing and I'll either get along with this wig or I'll just get another one!

Jacq - Glad to hear your wig feels secure as that is a concern that I have that it'll slip or get blown out of place or that I'll brush up against something and it'll get snagged. Let me know how the washing of it turns out. Also another worry of mine is that it'll come out looking s complete synthetic mess. I really do need to get out more and just stop fretting about stuff - my OH often says I'd worry about not having anything to worry about . Good luck with the wash!

Sue xx
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Re: August 2018 Chemo starters

Hi Sue
I got so upset when I tried my wig on with hair as, like yours, it just looked and felt wrong. Once I’d shaved it went on easily, felt secure and, so everyone tells me, looks fab. I’m about to wash it for the first time so fingers crossed it comes out looking ok!
Jacq x
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Kip Community Champion
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Re: August 2018 Chemo starters

Hi Sb , the hair thing is a big issue but youll cope, the thought is harder than the deed. I am on cycke 4 of 6 nd mh hair is coming back already, fluffy stubble so far but it's hair! Be strong nd take a day at a time
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Re: August 2018 Chemo starters

Morning all

Good to hear that most of us are coping with what is being thrown our way.

It's my 2nd day after round 2 of EC. Started to feel dodgy around 6:30 yesterday, tried to ignore it for a while but eventually gave up just after 8 and went to bed. Fell asleep more or less straight away and woke up what felt to be hours later feeling I'd had a fab sleep to find it was only 10:30!! Spent the next 4 hours tossing and turning (thanks steroids) and playing the word association game on here and being entertained by the Daily Mail and rants of various people (I can waste hours reading the comments on some articles - if ever you are having a slow day take a look 😀) but then i did manage to get another 4 hours sleep.

My OH brought me breakfast in bed before he went off to work and I'm just willing myself into the shower but dreading being vertical incase the sickness hits.

Like others my hair is coming out so I'm wearing hats and scarves. Ive had a wig for about 5 weeks now - loved it in the shop, tried it on Monday for the first time - couldn't get it to sit right and had a complete meltdown (Monday was a bad day for me as I was really low due to the hairloss which has been the most difficult thing for me to accept - the other SEs I've had have been fairly short lived up to now but this is a longer-term thing to deal with and even though my hairdresser says my hair grows quick I reckon it will be 9-12months post treatment before it's back to how it was).

Im planning to go back to the wig shop to see if they can help me position it properly and maybe do something with the fringe which is the bit I'm really unhappy about - I did speak to the chemo nurse y'day and she said it would probably sit better on a bald head - at the mo I've just got a general thining of hair - no bald spots yet but who knows that could change once the sleep cap comes off and I've showered - but I can't bring myself to shave - I don't know if I'm clinging to a false hope that I won't lose if all so that when it does start to grow back I've got a head (no pun intended) start and whilst I understand at lot of women feel as though they are taking control by proactively shaving - I just feel as though I'd be admitting defeat and I'd be left wondering what if. I'm no longer traumatised by my hair coming away so I think whilst ever thats the case I'll leave as is. Apologies for the ramble but I do find it cathartic.

So I hope you all have a good day and that you manage to enjoy the bank holiday weekend with family and friends.

Good luck to those of you that are on chemo day today and for those of you struggling to get a parking concession agreed - keep asking and nagging until someone comes up trumps for you.

Happy days everyone

Sue xx
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Re: August 2018 Chemo starters

Hi ladies

Gosh..... not been on for a couple of days so just catching up with you all!

There are some ups and downs......bless you all.

 

Sorry to hear you are in hospital Kip, hope you get sorted and home very soon!

 

Georgie good to hear you got your pic line in eventually and hopefully it will save a lot of hassle for you now. Good luck and hugs going your way for the next round.

On the parking issue I only found out this week from another patient that if we take our ticket from the machine into the department we are attending be it chemo, outpatients or a&e the reception stamp it and we don't pay.

This is York trust so it obviously varies depending where you live. 

 

Jude, like you am just coming up for breath after having 2nd FEC 2 days ago. It seemed to hit me like a brick wall 5pm that afternoon. More so than last time.They changed my sickness meds which they warned can cause drowsiness...that's all I need more spaced out than normal but they seem to be working. They also gave me lansoprazole for the gastric issues. Haven't had the hangover type headache this time but was awake 2am on the dot last night.

We basically just have to ride through this don't we?

 

Ktk it is encouraging to read you were fit to go out the day after your first T round. Let us know how you get on as I for one am dreading them.

 

Also lost most of hair now which started going on day 15 but have to say got used to it quite quickly. Was out and about with headscarves on last weekend and did not get too many funny looks. Got my wig too but there is so much more hair on it than used to so may only wear it for special occasions!

The chemo hairdresser told me no need to wear anything under the one I have and it doesn't feel as though it would blow off.

 

To cheer you all up....My OH said he thought he had woken up next to Sigourni Weaver in Alien 3 the other morning as my sleep cap had come off. 

 

Hope you all have as good a day as possible.

 

love Amanda x

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Kip Community Champion
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Re: August 2018 Chemo starters

Yayy well done.. keep an eye on your mouth! Salt water before anythjng happens... X
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ktk
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Re: August 2018 Chemo starters

Hi Georgie. I’m keeping my fingers crossed 🤞 for a better time for you this time. I’m glad the Picc delivery worked so that is a good start. Keep an eye on your temp though!!

Just to let you all know I had my first T (after 3 x FEC) on Wednesday. No sickness, up and about. I even went into school to see my year group get their GCSE results yesterday. I could not have done that the day after FEC. I’m keeping an eye on the expected bone pain and will start taking codeine with the Filgrastim injections today. I also have had my nails painted black with sparkles!!😁🤞
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Re: August 2018 Chemo starters

Hi Kip

Sorry to hear you have been admitted re low neuts, whilst you are in the best place it’s a bit of a bummer!

Take care & I hope you pick up quickly & are out soon

Love Jude x

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Re: August 2018 Chemo starters

Hi Kip, 

i have just posted in the June thread in response to your hospital news today.  Big hugs xx 

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Kip Community Champion
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Re: August 2018 Chemo starters

Hi ladies you all seem to be doing well.  Im currently nin hospital withs neutropenia as neuts were 0.1 and temp of 38.2,. So please be vigilant of your temperature and call hotline for anything!!  😉

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Re: August 2018 Chemo starters

Hi Georgie

Pleased the picc line worked out for you today, that’s something at least
Good luck with the breast cate nurse it’s worth another go due to the high costs
Hope you get through the next few days ok - I’m just coming out the other side 😂

Jude x
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Re: August 2018 Chemo starters

Yes Subee, I agree with Jude; I had my 2nd chemo today. During the hard days on your first cycle you can't imagine doing it again but by the time this time came around I faced it knowing that the side effects still do go eventually and you have better days. Mine are 3 weekly. 

Thanks Jude, I will try that with the breast care nurse. The Macmillan lady said they are constantly asking the hospital bosses to give chemo / cancer patients a break.  I spent £17 on parking this week, and one was for the park and ride as it's cheaper at £2.80 but more hassle.  

All went ok today with the picc.  Much better than digging for veins like usual...  so the journey begins for another three weeks of surprise time bombs to go off.  My hair has all but abandoned me but I am enjoying scarves and accessories 🤗.  Sleep well all xxx

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Re: August 2018 Chemo starters

Hi Subee

You may find by the end of the cycle you can cope better with the idea of the next one...

Good luck

Jude x
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Re: August 2018 Chemo starters

Hi Georgie

That’s very poor re the parking - last idea ask your breast care nurse as mine arranged my permit & we just picked it up, worth a try if you’ve got the energy

Hope today goes ok

Jude x
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Re: August 2018 Chemo starters

Thanks Jude,
Oncologist has changed a few things for next time as had such awful side effects. Will see how it goes. Told him I really couldn’t do 6 cycles. So taking 1 at a time. It gruelling! X
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Re: August 2018 Chemo starters

Went to have the picc line checked this morning. 

Waited 10 minutes, line checked in 2 minutes. 

Ventured on to the reception desk to ask about parking charges.  The 'best we can do for you is £15 a week love'...... 'how many times do you come a week?'  I told him that this week it was 4 days in a row.  Other weeks only once or twice.  'Oh no then love, I don't think it will be worth £15'.  

I ageed and went to pay the charge.    Not 'appy.  😡

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ktk
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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
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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

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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.
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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

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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
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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
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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

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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

 

 

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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
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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
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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

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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
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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
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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

 

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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

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Re: August 2018 Chemo starters

 
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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
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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

 

 

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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

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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
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Re: August 2018 Chemo starters

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

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Kip Community Champion
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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 

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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
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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 

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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 💋💋💋

 

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ktk
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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
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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

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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
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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.
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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