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August 2018 Chemo starters

Member

Re: August 2018 Chemo starters

Oh Georgie, you are having a tough time of i

Long term the picc line should help especially if you need any other treatment antibiotics etc - not that I have any experience of one

Really feel for you as an artist but fingers crossed you will be good as new at the end of all this

I’m on day 15 & I am moulting prolifically now - have to say it’s horrible, I’m dreading washing it tomorrow. Having an haircut on Friday but whether it’s just a short pixie cut or a full blown shave I’m not sure yet

Take care
Jude x

Member

Re: August 2018 Chemo starters

Oh Georgie Gee
I really really feel for you. My sister is an artist, and I can feel your fears in the same way as if she were telling me. Hope for the best, make sure you tell the staff all your worries so they can be super-careful, and I will keep fingers and paws crossed for you too.x
Kip Community Champion
Community Champion

Re: August 2018 Chemo starters

On Georgie you've been through so much in the last few days you are allowed a wobbld and rant.  I haven't experienced a picc but several on here have and are so happy with them and have no trouble.  I'm sure you'll be fine.  Talk to your nurse about your worries over use if arm I'm sure it will! Be ok.  As for hair, I cried e buckets shaving mine, it is tough but much worse was the constant hair shedding.  As an art student you will rock any look, just see it as a new experiment, j have heard lots if ladies live the bald look and embrace it, I've gotten used to it, although I would be lying if n said j didn't miss my hair.  Allow yourself time and z good cry if n need to, if help s.  Take care 

 

Member

Re: August 2018 Chemo starters

Thank you Sue and Jude, 

 

It is lovely to be home, however I am now counting down until next chemo.  

Can I vent my fears to my fellow travellers please? I'm so scared.... 

I'm now also having a PICC put in 2 days before. Letter was on the doormat.   After the pummelling my right arm has taken the last week or so from needles, IV and blood tests I really don't feel ready for any more.  Of course, left arm is shot because of lymph nodes being taken out.  

I am an artist and I'm scared of losing the use of my arm.  Also, as left arm has some awkward numbness and pain, I've taken to sleeping on my right side, but now I know I will have to be careful about the picc.  Trying to be positive and hoping now though to make my own picc covers.  

 

Hair is still intact on day 12 today but I'm told it will start to fall soonish.  So am having it cut short tomorrow to prepare.  I think I might cry.  I'm usually very choosy about hair styles; was an art student in the 70's and love playing with style and colour.  

 

Its so so good we have one another... thank you all for sharing your stories, and for listening to mine.  

 

Georgie x

 

Kip Community Champion
Community Champion

Re: August 2018 Chemo starters

Hi ladies, to a!l of you out looking for wigs, try lots of styles and colours it's surprising what ends up suiting you.  I always had past shoulder length hair but cut it really short pre chemo and everyone loved it but I was sure I wanted a wig like my old hair but wow none of them suited me so have gone for a short wig and it looks great and is easy to care for.  It's fake hair but feels real and easy to wash.  Just do it once a week if feel like it, stuck it in the sink with wig shampoo and cold water. Swish around, same with conditioner then pat dry and hang in head stand over night, quick shake in morning and it's back in style.  So easy.  If you can get a bamboo wig liner, it makes it more comfy to wear.  Only downside the they can get warm.  I wear hats or go bald around the house.  For those of you with the head tingles that does sound like the start of shedding, be brave you'll get through it, once it's gone you can stop worrying about when it will happen.  Take care, glad you are all getting through first chemos, I've had no 4 today, first T so I'll let you guys know what's that's like or pop into June chemo starters.  Take care Kip X 

Member

Re: August 2018 Chemo starters

Good to hear you are home Georgie - take it steady and look after yourself

Sue x
Member

Re: August 2018 Chemo starters

That’s good news Georgie! Take it steady

Will you be ok to have your next cycle of chemo?

Jude x
Member

Re: August 2018 Chemo starters

Hello ladies, 

i am going home today after being in hospital 4 nights.  

Am a little bit scared in case my temp climbs again.  Would so hate to have to repeat this 😫

Georgie Gee xxx

Member

Re: August 2018 Chemo starters

Hi Jude,

 

Yes I had mine cut really short and also managed to get a short wig. I currently have quite a few grey hairs coming through as I haven’t coloured it since diagnosis....the wig just looks the same as my hair but just no greys! So at least that is a positive eh!

My head is really sore at moment so I don’t think I’ll be long before it falls out. 

 

Ive got a couple of scarfs and hats to wear around the house, as I am not sure how long I will keep the wig on for. Hopefully though we have seen all the 30c + weather and it will start to cool down, not sure how comfortable wigs are in the scorching heat.

 

Let us know how you go.

jo x

 

 

Member

Re: August 2018 Chemo starters

Hi Jo
I live in Huddersfield & my treatment is all at Bradford. I can get a wig on the NHS & they are from a lovely shop in Leeds. I’ve had a between jaw & shoulder bob for years but had it cut shorter before my first chemo & am due back at the end of this week to go shorter again!
However my scalp is very tingly & I have a lot of loose hairs so it’s starting...
I’m thinking of getting a short wig on the NHS & then buying a more flamboyant one for the odd occasion out!
I’ve got a friend coming with me who will give me an honest opinion - maybe too honest 😂
Jude x
Member

Re: August 2018 Chemo starters

Hi Jude.

 

Im  to sure where you live bit I went to a fab shop in Ware, Herts. They are really good and they have loads of different styles and colours and if they don’t have it they can order it in. I took my mum with me for an honest opinion.

For some reason I was also fairly anxious about it, especially when I had to decide on the one I wanted.

i went for something that was almost the same as my current cut.

Are you getting the wig on the nhs? Mine was part paid for on prescription, think that depends on the hospital you are under. I’m with the North Middx. 

 

Good luck with the wig hunting. 

Member

Re: August 2018 Chemo starters

Jude, hopefully if the get your sickness meds right the rest will follow and you'll be fine.
Member

Re: August 2018 Chemo starters

Hi Sally
You have my full admiration for still getting into work - for the first 10 days there was no way I could have got there. I am able to do some work from home but that was very limited due to the heavy nausea
I am getting different anti sickness med next time, a tablet for heartburn & they are going to prescribe diflam? for my sore mouth & ulcers
Good luck for the rest of your treatment
Jude x
Member

Re: August 2018 Chemo starters

Hi Jude,

To be honest I've not really had any side effects with either. I had to have the filgristim injections with EC and had a bit of bone pain in hips and lower back but only for 1 day per cycle. Apart from the nothing although fairly fatigued during the really hot weather (fine when it was cooler) . I've still gone to work every day apart from treatment days the two days sorting out a blood clot in chemo arm. For me the T is a bit easier because I have less steroids even though I got the Oncologist to halve mine during EC which, being diabetic, means my blood sugars are more controlled. There are also no extra meds for me to take with the T, it's all done by infusion on the day. I do have the domperidone to take as and when should I need it but I've not needed it at all and still have the original packet I was given with my first cycle of EC. All still takes just as long and cos I'm cold capping I'm at the hospital 5/6 hours each time.
Member

Re: August 2018 Chemo starters

Hi Jo
My second chemo is also 20th!
Any tips for the wig? I’ve got my wig appointment this Wednesday & for some reason feel a bit nervous about it
Jude x
Member

Re: August 2018 Chemo starters

Hi Sally
I’m doing 3 x EC ( only had 1 x EC so far) & 3 x T - I just wondered what different side effects if any you have had with the T?
Jude x
Member

Re: August 2018 Chemo starters

Hi all,

 

Well I’m now on day 12 of my first cycle and have actually had a fairly reasonable week, so much better than week one when I was extremely nauseous and sick a few times. I’ve been tired but have gone out for a walk everyday - sometimes it has been hard to drag myself out but so worth it in the end. My throat is sore and gums really delicate so I will need to find a suitable mouth wash. Off to see ONG on the 15th or check I am all ok for round 2. which will be on the 20th. (Started 30th July but sneaked over to the Aug starters!)

 

I now have a fab wig that I think I will be wearing sooner rather than later.....my hair hasn’t fallen out yet but my scalp is really sore to touch and weird sensation. I am sure hair will be on the floor very soon!

I know it sounds vain but I am dreading the hair loss, I only have short hair but it is part of your identity etc. But  I have to keep telling myself it is for a short time......

 

Hope everyone else to coping ok with the treatment. Good luck to those are are due to start over the next few days.

We can and we will do this....

 

jo x

 

Member

Re: August 2018 Chemo starters

Phew - for a moment there I thought my phone had made it into the washing machine with the load I've just started.

Is this chemo brain 🤔
Member

Re: August 2018 Chemo starters

Hi AMB67

I was a bit like you with the dizzy head and fatigue. You might not feel like it but try and get out for a little walk - after a 15 mins walk round the block I felt like a new woman and haven't looked back since. Give it a go! 🚶🚶

Sue x
Member

Re: August 2018 Chemo starters

Hope you are ok Georgie, I had to have a week in hospital but bounced back after!

 

Member

Re: August 2018 Chemo starters

Hi,

Another one from June thread. I've done 4 x EC and 2 x T so far. Just another 10xweekly T to go. A bit of encouragement for you cold capping ladies. Keep at it. The head pain during the first one won't be repeated. It'll only be a few minutes rather than 15/20 for subsequent treatments. I've kept the majority of my hair so far though it's a bit thinner on top (it wasn't that thick to start with). The really hot weather didn't help in trying to keep my scalp cool especially on Southeastern on my commute to work. When it was 32c I couldn't get the cold cap on quick enough. I think my hair is even still growing judging by how unkempt bit of it are after my nice tidy pre-chemo haircut.

Keep at it, it is worth it.
Member

Re: August 2018 Chemo starters

Morning ladies

 

Hope you are all ok and coping, particularly Georgie-hope you get home soon!

 

Day 10 here -still some bowel 'issues', sleeping better, appetite and taste returning. Very dizzy and off balance and overwhelmingly fatigued today. Hit me like a brick wall in fact.

Hoping next week life can return to normal for at least a few days...fingers crossed.

Hair is feeling thin and delicate but still there for now!! Dare not blow dry in case it all flies off.

 

onwards and upwards

thinking of you all

Amanda x

Member

Re: August 2018 Chemo starters

Hi Georgie

You poor thing, hope you start to feel better soon & get back to your own bed

Thinking of you

Jude x
ktk
Member

Re: August 2018 Chemo starters

Hi Georgie. Sorry you ended up being admitted but I’m glad you are being looked after! Hope you get home soon. Kx
Community Champion

Re: August 2018 Chemo starters

Georgie,  I used my time in hospital as an opportunity to read books.  A luxury I usually rarely have time for.  It feels hard at the time, especially when there are sick people around you.  The lowest my neutrophils ever got was 0.23 but a friend had them close to zero (I think 0.04) and they bounced back and then she started taking LifeMel honey daily and they weren't a problem again.  Sending hugs. Xxx

Community Champion

Re: August 2018 Chemo starters

Sending you a hug Georgie - hope you feel better soon .
Member

Re: August 2018 Chemo starters

Thank you for your support everyone.  My neutrophil score on admission was 0.0! 

 

I do long for for my own bed and home, but feel safe here for the time being.  The antibiotics are making me feel sick though so I am going to have to chase a nurse again... everything takes such a long time here, an d there's no one to talk to. 

I will take a peek at your blog Mai7. 

🤒

Georgie Gee 

Community Champion

Re: August 2018 Chemo starters

Georgie,  sorry you have ended up in hospital.  This happened to me 5 times due to high temperature.  It's essential though for sepsis monitoring as chemo leaves your immune system vulnerable.  If it's your neutrophils they usually won't let you out until they are back at 1 and won't give the next chemo until they are at 1.5. I did 8 rounds of chemo and finished active treatment in January.  Life it good again.   Hang in there. Xxxxx

 

Heres my blog which has lots of chemo tips for anyone that hasn't seen it.  http://lifeafterlola.blogspot.com/

 

Best wishes ladies. Xxx

Member

Re: August 2018 Chemo starters

I bought a digital thermometer from Tesco seems to be very accurate.
Your gp should be giving you support even if only by phone, mine has given me prescription for antibiotics just in case I need them over the weekend. Suffering with a cough but temp is ok so no need to go to hospital. The 24 hour helpline at our local hospital has been very supportive.
Member

Re: August 2018 Chemo starters

Hi Georgie
Sorry to hear your news but you are in the best place
Hope you are feeling better soon
Jude x
Member

Re: August 2018 Chemo starters

Hello ladies

Can I interest any of you in a game to help us combat chemo brain????? It's on this forum in the coffee lounge /chat and games section and is called word association again. I've been trying to play but it only gets s very occasional other visitor and it's not much fun playing against yourself

I think this link might take you to it
https://forum.breastcancercare.org.uk/t5/Chat-and-games/WORD-ASSOCIATION-AGAIN/td-p/159964

Hope to see you over there: Let's get that gray matter pumping 😁🙌😵

Sue xx
ktk
Member

Re: August 2018 Chemo starters

Well done Georgie! Sorry to have nagged but you have put my mind at rest. I do hope they are looking after you well. Take it easy. Much love Kxxx
Member

Re: August 2018 Chemo starters

Kip - Thanks for the advice - it's good to hear from someone a little further into this.

Georgie gee - hope you are fixed up soon

S x
Member

Re: August 2018 Chemo starters

Hi Ladies,

So after temp rocketed to 38.4 last night I took the advice and came to Acute Assessment Unit.  

On fluids, I think IV antibiotics and am awaiting the next set of results to see what is next.  Now I'm actually in hospital I feel safer, but I do wonder to myself why I am putting myself through all of this.  

 

Georgie x

Kip Community Champion
Community Champion

Re: August 2018 Chemo starters

Hi Ladies, been reading your threads about your first FEC and it really brings it all back to me (even though I am only 3 down as yet).   My first FEC I got a sore throat and mouth, ONCs said to use Corsdyl mouthwash (watered down if need be as its quite strong) or cooled boiled salt water, the salt water really helped, do it every time you eat.   I also use Biotene mouthwash (from Boots) which is especially for chemo (and other conditions), its moistens your mouth and is not too harsh.  Biotene also do a toothpaste too.  I found I didn't get the sore throat on my next cycles of FEC, and never got ulcers, just the dry white tongue with lack of taste and a sort of burning feeling, like I'd drunk/eaten something too hot.  Over the days it does lessen and by day 11-12 things were coming back to normal.   As for sickness, I had the as and when sickness tablets to take and did take them as I needed, I found eating crackers helped stave the sickness.  Sleeplessness is often teh steroids, make sure you don't take any after midday (advised to take them morning and lunch) as this helps with the sleep.   That does pass too as you come off of them.   Be prepared for an emotional rolllercoaster as you come off them though, thats happened to a few of us but again a couple of days later is goes away. As for tummys and toilets problems, I did get constipation and was advised to take sennokot before bed, it helped, then had a bout of diarrohea but that passed to (exuse the pun!)  you can take something for that if its really bad, but see if you can ride it out for a little bit as you may end up getting really constipated.  Keep drinking lots and eat prunes for breakfast and lots of fruit.  I also take Manuka honey in the morning, its supposed to help with antibacterial properties etc.  Not sure if it works but worth a try.  Also if you can stomach it, I have been advised to drink carrot juice, beetroot juice and apple juice.  Have to day I cant bear beetroot juice but mix carrot and apple together and its quite nice, helps with vitamins and those bloods cells... worth a try too. 

I may have mentioned some of this on an earlier thread so please excuse me... chemo head does exist!!   Take care, rest up when you need, but do try to have a little stroll, even if its round the garden as I found this really does help, you can go stir crazy with this thing!

Kip xx

 

Member

Re: August 2018 Chemo starters

Hi Ladies

Fran - I’m on day 11 & it’s being my best day since chemo - so things will improve for you soon
GG - I bought a digital in ear thermometer but I’ve not used it that much so it hasn’t made my ear sore - I bought it because it had the best reviews 😀
SB - my first trip out was Morrison’s - exciting lives we are now living!
AMB - I’m just starting to lose a few extra hairs & my scalp is very itchy!

Sleep well all

Jude x
Member

Re: August 2018 Chemo starters

Temp is more controlled thanks Fran...... 

I have been taking more notice today.  And I will go if necessary. 

Have sore throat and mouth too and the nausea isn't really going away.  Can't imagine eating a normal meal. 

 

My GP is supposed to be calling tomorrow - just want them to be aware and responsive to any needs I have that the hospital won't cover.  They say GP should provide sleeping stuff (which I was on before since diagnosis) but GP says not to call them for things.  It's all very political.  I had called GP on Monday for advice but they said that the earliest a doctor could even speak to me was tomorrow..... there's something wrong! 

 

Just wondering as well, what do people use for thermometers?  I bought a digital one you put in your ear, but am thinking I might get a no contact one you just zap yourself with?  My ears are a bit sore using the ear one all the time, and the readings differ from one ear to the other😫..... 

Member

Re: August 2018 Chemo starters

Hi ladies. I hope you are all coping ok with the side effect. Take it easy and relax when you need to. Don't overdo it on your first cycle.
Sleeping can be tricky especially if you still have steroids racing round your system. It should call down after a few days. Get those afternoon naps in to keep you going.
X
Member

Re: August 2018 Chemo starters

All tests came back 'normal' last night so was discharged home, antibiotics not required altho they have referred me to an ambulatory clinic, just waiting for them to contact me with details, like i don't have enough bloomin commitments thanks to the BCC!

1st chemo was 1st Aug so I was expecting to feel more like myself by now but everyday seems to bring something new trying to drag me down, today it's sore throat, mouth ulcers and a pounding heart if I try and do anything, will this never end??? Actually sod that, I'm out for a meal with friends tomorrow and expecting a good old laugh, the SEs can do one for an evening lol

Early night tonight, clean bedding on the bed, can't wait haha, it's the little things....

Georgie how's yr temp today?

Fran x
Member

Re: August 2018 Chemo starters

Woo hoo. First solo trip out today post chemo. Went to Tesco (yes I know you are all jealous). I managed to put makeup on and everything, didn't get lost, got everything on the list and even remembered a few things we needed that hadn't made it to the list. Ready for a nap now though 😴😴😴

ktk
Member

Re: August 2018 Chemo starters

Hi Jacqui those symptoms sound really familiar. Sudden urge to go and need to get there quickly! Take codeine for the bone ache. My GP recommended taking it before the pain started!

Georgie, you are naughty! Don’t you think that ‘they’ have invested all this money in treating you and do not want to see that wasted by you not looking after yourself and following advice to call them if your temp rises? Having said that I know exactly where you are coming from. It is in our nature not to make a fuss, but now you need to be selfish and look after yourself!!

I went to see MamaMia2 with my daughter yesterday. It is a great feel good film, but take your tissues because the christening scene will make you cry!!

Have a nice cool day. Look after yourselves Kxx
Member

Re: August 2018 Chemo starters

Hi Multitasker
Sounds like we are suffering from the similar side effects. Lack of sleep is making me weepy and the gut issues are horrible. I’ve realised that my worst gut problems are caused by filgrastim injections. I get A frequent and uncomfortable urge to “go” and loose stool. TMI! 😐 It starts the day after my first injections, which is five days post chemo, just as the chemo side effects are tailing off. I understand the need for the filgrastim, but dread having to take it. The bone ache this time was awful.
Sending best wishes for sleep and a settled tum.
Jacq x
Member

Re: August 2018 Chemo starters

Morning ladies,

 

Been quiet but been following your posts and your trials. Its hard isnt it.

 

Been sleeping very bad which has compounded the exhaustion. Think that first night really knocked me out and set the scene for the week. I’ve arranged to see the oncologist next week to see what we can change next time.

 

At the moment I am suffereing from somach cramps at points through the day. I’ve left a message with the onc nurse to call me but wondered if you had any tips? Nausea has lessened massively, its the tummy ache now, like bad period cramps. Loose bowels but not diarrhoea (god! Am I really sharing this 😖)

 

Hope everyones day is an improving one 👍🏻

 

Member

Re: August 2018 Chemo starters

Hi Ladies,

Yes you were all right about last night in that I should have called in about my temp and today I am packing an emergency bag ready to take with me if it should happen again.  

I think I just panicked about the consequences and possible false alarm - sadly our local hospital is always full and......... I will go if there is a next time.  Glad you are home Fran.  Did they give you antibiotics? 

 

Member

Re: August 2018 Chemo starters

Morning

 

Hope Fran & Georgie have been ok overnight and you have both been tucked up in your own beds!

 

Day 8 -First night for me where I wasn't wandering at 3 am ....hurray!

Did feel the need to sort out my freezer at 6.30am though-what is that all about?

 

hope you ladies have a good day today 

A xx

Member

Re: August 2018 Chemo starters

Hello all

Thanks Kip, Jude and AMB for your kind words and support.

Georgie gee - watch that temperature - I can't say how much it was stressed to me that a temp over 37.5 meant a call straight to the helpline - don't take any chances!

Hope everyone has a restful night and a good day tomorrow.

Sue
Member

Re: August 2018 Chemo starters

Hi Fran & Georgie Gee

Hope you are both ok - good news that you can go home Fran, Georgie think you need to phone the helpline & take advice if still high

My breast care nurse phoned today to see how I had cooed with the first chemo & the upshot is she will contact the chemo unit & sort out different anti sickness meds to try next time & a tablet for my heartburn & some special mouthwash difflam? for my sore mouth / ulcers. Result!

Take care

Jude x
Community Champion

Re: August 2018 Chemo starters

Good news Fran !
Member

Re: August 2018 Chemo starters

Everything is ok, going home now to my own bed yay, work tomorrow boo.

Georgie I hope you're ok xx
ktk
Member

Re: August 2018 Chemo starters

Georgie 37.9 is high. You are not making a fuss. Ring your 24hr helpline and see what they say. You MUST look after yourself. Please please ring the helpline. Kx