August 2018 Chemo starters

[Kip]

Yayy well done.. keep an eye on your mouth! Salt water before anythjng happens... X

[ktk]

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!!😁🤞

[Jude1962]

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

[Georgie Gee]

Hi Kip, 

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

[Kip]

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!!  😉

[Jude1962]

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

[Georgie Gee]

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

[Jude1962]

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

[Jude1962]

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

[Subee7]

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

[Georgie Gee]

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.  😡

[ktk]

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

[Sunflower18]

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

[Millsy]

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.

[Georgie Gee]

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

[Jude1962]

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

[Jude1962]

Hi Subee

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

Jude x

[Jude1962]

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

[Cat67]

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

[SB1610]

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

[Subee7]

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

[Georgie Gee]

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

[Jude1962]

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

[Jude1962]

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

[Cat67]

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! 

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

[Sunflower18]

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

[Jude1962]

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

[Sunflower18]

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

[Sunflower18]

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

[Jude1962]

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

[Jude1962]

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

[Millsy]

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]

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 

[Jude1962]

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

[Georgie Gee]

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 

[Multitasker]

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]

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

[Cat67]

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

[JacqB]

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

[SallyG63]

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.

[Millsy]

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

[Cat67]

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! )

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

Keep smiling lovely ladies

Xxx

[Georgie Gee]

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

[Paulus]

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]

Well done another step forwards or

[Jude1962]

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]

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

[SB1610]

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

[Sunflower18]

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