cancel
Showing results for 
Search instead for 
Did you mean: 

January 2019 chemo starters

Member

Re: January 2019 chemo starters

Hi debs, thanks for your message, great to know your side effects have not been too bad. I did have some nausea and aching joints for 2 days. Both relieved with paracetamol and the anti nausea meds. Also some diarrhoea 3 days post chemo. I kept a journal to see if this week follows the same pattern. The nausea is much the same but manageable. I have a picc line and is much easier than stressing they won't find a vein as mine are terrible. It's ok , I attend hospital one day for bloods and line redressing then chemo the next.

Hope you have a good week xx

Kip
Member

Re: January 2019 chemo starters

I felt the same Trixie, you will find you feel more in control once things get started.
Member

Re: January 2019 chemo starters

Kip thank you, you explained that lovely found it really informative, just received my heart scan for Wednesday, its such a strange feeling that probably only you ladies will truly understand but I can't wait to get started, because every ache & pain sets my mind on the first seat of the biggest rollcoater xx
Member

Re: January 2019 chemo starters

I'm 50 in July, so all quite similar. I love your grey crop Kit, really brings out your eyes. I've always had my hair coloured but its it's pretty much full grey so that's going to be interesting for me too when it grows back x

Kip
Member

Re: January 2019 chemo starters

Meant to add DiKat... my chemo nurses always told me not to worry about the diet during chemo... you need to eat what you can when you can... its not a time to worry about that.   If you are struggling to keep weight on, then fill up when you can with what you can!

Kip
Member

Re: January 2019 chemo starters

Hi,

TrixieLady:  I'm 48 so not far behind you.   To be quote honest I think I was fairly lucky with the chemo.  The FEC part I used to find I felt a bit sickly (almost pregnancy like) for about 4-5 days and then had the loss of taste and sore tongue but this used to sort itself by about day 8-9.  The tiredness builds up but I don't think I was too bad, only remember 1 or 2 days where I had a sleep during the day.  BUT I am very luck in that I work part timea and from home and was able to fall out of bed in PJs and sit at a desk for a few hours, my work is only centered around answering phones if they ring and a bit of typing so somedays I laid on the sofa and read a book inbetween or pottered around.   The hair loss was a big big milestone for me.  I had told myself I wouldn't let it bother me "Its only hair".. but when on day 12 of the first chemo it started to go.. my resolve followed suit.  By Day 15 I had to have the shave.. I will never ever forget that day, in fact I feel tears just thinking about it...a friend sat and held my hand and my son watched as they shaved the lot.   I couldn't bear to see myself for a few days but I had a nice wig which everyone said looked fab and used that and went around the house bald for most of the summer as it was so hot.   It was hard to make people understand that even though I had lost a boob, losing my hair was harder.  I felt I had gone from being a healthy person to looking like the chemo patient.   Having said all that, after a couple of weeks I did move forward and accepted it.. never like it particularly.. but accepted it and wow it saved time in the shower.  

The T Part of chemo was a differnet kettle of fish.   I didn't have herceptin, just docetaxol and I was dreading it. I had read about it, it was going to be awful etc etc and I was so scared.   But it was anymore awful... just different I guess.  The SEs I found didn't start for a few days, the worst being the horrible mouth, T seems to affect that more I think.  I got oral thrush during the 1st cycle of T and mouth ulcers but the hospital sorted me out and gave me medication for the next 2 cycles which helped it from getting too bad.  The loss of taste was worse, lasted longer.  I did have a stay in hopsital during cycle 4 (first T) when my temperature was high, 2 nights in a single room wasn't pleasant but they looked after me and made sure I didn't get an infection.  The next time round I was fine, during the last cycle I had the self administered injections to ensure white bloods were high enough for the last bout.  Eyelashes and eyebrows going was hard too, they didn't go until chemo 5 but they are back now.  My hair was growing again during chemo 5 (apparently thats quite common if you  have FEC first and then T).   Now its full coverage.   Oh my thumb got numb during T too, look out for numb fingers and toes and report it as they can reduce the chemo to prevent neuropathy.  After chemo finished my thumb came back to normal but the nails are quite ugly, very short and have ridges, par for the course I'm afraid but they are growing too.  As they always say, everyone reacts differently to all of this and its best to wait and see and just deal with it as it happens.  Don't be hard on yourself if you need to rest, ask for help it you need to (my mum used to come over once a week and clean for me so I didn't need to worry even though I could have done it).  Hope that helps.

DiKat - after treatment ends?  Well I have read everything going about what I should eat, what I should do etc etc.. the conflicting reports are a nightmare.   I am taking magnesium and zinc for my joint aches (chemo or Tamoxifen not sure which is causing it) but checked that with teh Onc nurse first.   As for eating, I wasn't sure if I should be avoiding dairy (many posts suggeste that) but I asked at the hospital and they said no, just eat a balanced healthy diet... don't worry if you drink a bit, keep within the guidelines and just try to maintain a healthy weight and do some exercise.  Its a minefield of information and quite overwhelming but I was asked if I wanted to see a dietician for some advice and although I haven't yet I may ask.   Its hard to move forward when you wonder what you should be doing for the best but I think just be sensible and try to eat well, I still eat dairy, meat, drink alcohol and eat chocoloateSmiley Wink

I know this is a bit further down the line for you guys still but worth a read:

"After the Treatment Finishes - Then What? by Dr Peter Harvey... you can find this on line and it hits the nail on the head!  Ive just printed it off to show my hubby, gives him an insight into how this feels to.

Keep well

Kip

xx

Member

Re: January 2019 chemo starters

Hi Kip 'm a December starter so post on that forum. If you've seen any of my posts you'll know I'm struggling big time with the chemo. It's really useful hearing your journey and bet it must be really strange to no longer have all these appointments. I'm struggling to keep my weight on so not adopting the most healthy of lifestyles at the moment. Im interested to know how you feel about lifestyle once you've finished treatments Kip. Does it send people into a blind panic about doing only the right?? No alcohol, parabens only wholegrains wholefoods etc. etc. I'd be interested to know what anyone else thinks too. I've read the lifeafterlola blog and found that interesting. Am I going to be a nervous wreck about anything that I eat, drink, use for ever! X

Member

Re: January 2019 chemo starters

Hi Kip, this forum is fantastic it's really great to hear from ladies that have been or going through it, it seems like a never ending road of hospital appointments and worrying about results and other pains appearing, how did you find the chemo? on T did you also have the herceptin? administered? how did you manage around friends and family with risks of infection? I can only imagine what you've been thinking and feeling coz my chemo hasn't started yet but I've had lymph node clearance in Dec cancer in one and also had a mastectomy in November chemo after heart scan just waiting for appointment, at least your going to get help to hopefully get your life moving again, big hugs, not sure the age ranges but I'm 50 xx
Kip
Member

Re: January 2019 chemo starters

Hello TrixieLady, this is where I am up to with my treatment...

I was diagnosed in April 18, grade 2 IDC, had a single masectomy (no recon) and SNB removal, found sentinel node and another one had cells and the third had micromet so had 3 x FEC and 3 x T chemo starting in July and finished on 24 Sept.  Then had ANC, remaining nodes in levels 1 and 2 removed, none had cancer in them phewwww.... started 15 x radiotherapy sessions on 29th November, finished 19th December.  So all active treatment finished now.  Oh and started Tamoxifen for 10 years, started in middle of November.  So far, hot flushes and aches and pains (although the pains could be due to chemo taking time to leave your system)  but needs must so ploughing on.  It seems so surreal when you see how much you go through over those months and you feel you'll never get to the end but you do.  Now I am waiting to see Radiotherapy for sign off and then I think i will getting a mammogram around the 1yr anniversary of diagnosis and then I believe its 6 months and then 1 yr and then ever year for 5 years.. not too sure.  Its a funny feeling when you get to this point... suddenly you are not at the hospital all the time and feel a bit alone.. struggled a bit to be honest but that seems to be the norm.  Suddenly you have to find you life again... I've signed up for a HOPE course at the hospital which is designed to help you move on, how to get to like you body again, how to address your fears etc.  

You ladies are doing really well, its so good you found each other, my monthly chemo forum kept me going (and still does) its only people going through it who can truly understand... 

Big hugs..

Kip

xx

LB2
Member

Re: January 2019 chemo starters

Hi everyone, thought I would chip in with my cold cap experience. I am now in my third week after 1st FEC treatment, 2nd one on Saturday. I did the cold cap, I would describe it as uncomfortable rather than painful. I took paracetemol before as a precaution, also wore a head band to protect forehead a bit. I have been washing my hair every 3rd day with non-paraben shampoo and wearing a hairnet in bed at night to protect the hair - not very attractive. My hair has started to fall out yesterday but not too much yet and mainly from underneath, I guess where the cold cap does not have so much contact. Even with the cap you can lose 30-50% of hair. I washed my hair this morning and expected to see a plug full of hair but there was not too much. So fingers crossed.

 

I also had a Pic line fitted the day before treatment it was a bit painful for me for the first week because of the bruising but has settled down now, don't even notice it.  I have also been very lucky with minimal side effects, make sure you take the steroids they prescribe, my worse symptom was back-pain after the filgrastim injections.

 

Good luck everyone

Member

Re: January 2019 chemo starters

Hi Debs my veins were so painful from chemo, I had a line put in last week I was so scared. It was absolutely painless and the difference it has made.

Love tbird xx
Member

Re: January 2019 chemo starters

Hi Welsh J.  I had my second Taxol yesterday.

 

My side effects in my first week were very minor - a bit of an upset tummy on the Saturday - which was five days later (that could have been the pizza from the night before!) and I've been quite spotty (although I have been slapping on a lot more moisturiser).  My nurse said if I didn't have side effects in the first week, this was likely to continue going forward, apart from the tiredness increasing.

 

I asked about hair loss and when I'll know if cold capping is doing its job and the nurse said I should know by about session 5 or 6.  

 

They asked me if anyone had talked to me about a line (which they haven't) as having the treatment weekly can be quite hard on the veins.  I'm not sure if I'm keen though.

 

Debs x

Member

Re: January 2019 chemo starters

I can recommend the Lactulose as well. I haven't used it personally, but the pharmacist recommended it for my elderly dad-said it was gentle, but effective! x

Member

Re: January 2019 chemo starters

Hi Kip, my own GP had actually said the same about the senna, think so far constipation and not eating or sleep well was my main problem so far I find it really difficult to drink at the best of times , so that's what's on my mind also hated the thought of my hair changing but if I can find away to make it less painful it might be easier to stomach, Kip where are you up to with your treatment? Xx
Kip
Member

Re: January 2019 chemo starters

Hello all,

Just catching up on your threads to see if I can help at all.   Much talk about the sore head... I had the same, it was really quite painful, stingy, tingly and achy just before it started to shed but once I braved it and shaved it off the pain stopped.  I think its the hair follicles reacting.   Just picture them going to sleep for a while ready to spurt out your new crazy chemo hair once its over.   Mine was shoulder length, virtually straight and mid brown (with a little fleckle of grey at the sides) now is almost white/silver grey with a fleckle of black and wavy and crazy so its an exciting time waiting to see what you will get back!

If you are suffering from constipation I found lactulose helped more than the Sennokot.. my chemo nurse suggested lactulose instead as she said your body can get used to Senna?  Not sure why it wouldn't get used to lactulose either... mystery to me!

 

Kip

xx

B74
Member

Re: January 2019 chemo starters

Welsh j - I have no experience of Taxol (yet) but other people have said the tiredness tends to be cumulative as you go on. I don't think you should experience totally different SEs though. My MO said the taste, digestive issues etc are more with AC / EC, whereas Taxol is more tiredness and body aches.

 

Trixielady - I'm sorry to hear about your blood test results. Were you already dealing with other health issues (thyroid, blood pressure, cholesterol etc) or were these results out of the blue? I have no idea what you could do to fix it & get ready for chemo apart from just trying to be as healthy as possible (diet, exercise etc) - but probably not easy to turn around in a short time. Manuka or Lifemed honey is meant to be good for WBCs.

 

Sunnydaze - I remember someone else describing the sensation (when her hair started to fall out) as like a "migraine of the scalp". So it sounds like the headache thing might not be unusual. Have you done the buzz / shave yet? I'm planning to as soon as it starts because I've heard it makes it hurt less - but no idea if that's true. My head has actually started to feel a bit tender today, so I don't think I have long - aghh!!

 

Hope everyone is doing well. I'm just wishing time would slow down, it's like I'm speeding towards the next infusion!

Member

Re: January 2019 chemo starters

Sunnydaze, sorry I can't help re headaches as I didn't have any. Is it worth giving your chemo unit a ring for advice?

Thank you for your kind words about my observation Smiley Happy A bit dramatic, but I'm trying to think to myself that if I can get through chemo, an observation is nothing! RE on a Friday though...! I was asked today if I could do some extra work next week, so definitely back properly now! I've gone back to a harder job than the one I left-I was covering PPA time before, now I'm job-sharing and teaching an age that I've not had so much experience with! Luckily I taught them a morning a week when they were in Reception and they are a lovely class and I'm enjoying being with them. They made me smile last week-I'd been wearing my wig when I returned, but ditched it over the Christmas holiday. They were very observant that I'd had my hair cut  and one thought it looked a bit of a different colour! At least my wig must have looked realistic!

I was really nervous about returning-I was off for 11mths-I wasn't sure I'd even remember how to take the register! I went back on a Phased Return and that made it easier x

Member

Re: January 2019 chemo starters

Helen, I meant say smells affected me too! I thought I could smell rotten fruit and kept making my daughter's check! And my bin smelt (to me!) like a chemo smell! xx

Member

Re: January 2019 chemo starters

Hello everyone
I am glad everyone’s chemo is going ok so far. I’m afraid I can’t offer any help re; cold capping or picc lines, because I have no experience of them.
Gencat, I am glad your return to work has gone ok. It doesn’t take long before the observations start hey! I’m sure you’ll be brilliant. I am an additional needs teacher, working in a unit in a primary school. I largely work with primary 1 and 2 children (Scotland) but haven’t worked since diagnosis in August.
Anyway, I wanted to put this out there and wondered if anyone has had bad headaches associated with their hair loss? My head feels tender as anticipated. I just wasn’t expecting the headaches. I have drunk loads of water, so I don’t think it’s dehydration.
Love to all 😘 sunnydaze
Member

Re: January 2019 chemo starters

Morning Helen, good to hear from you that everything went ok with your chemo and you're managing ok.

Yes, I thought I wouldn't be able to cope with the cold cap, but once I got through the first 10mins it was managable. I had icicles on my head afterwards! I was recommended to use Simple conditioner. (Plus Simple products for showering etc)

I had a PICC line and it was fine and didn't catch. My hospital let my ED come in with me whilst it was being fitted-I'd got the impression from the literature given that she wouldn't be allowed, but they were fine about her staying. Might be worth checking if your husband can if you'd prefer someone with you. It didn't hurt, but it was nice to have my daughter chatting to me so that I wasn't thinking about it.

I just had hospital bandages covering my arm, but it might have been better to have bought a cover as I found the bandages were either a bit too looose or tight.

Definitely a good idea to buy the plastic sleeves for the shower-I got mine from Boots, it was about £5.

It was a bit of a pain to have to go the hospital to have it flushed every 7-10 days, but on the plus side I found it quite reassuring to see someone on the chemo unit regularly. (When I had a bad urine infection it was the chemo nurse who realised that both the onc and my GP had given me the wrong antibiotics, which was the reason I wasn't getting any better!)

I had some funny food cravings whilst I was on chemo-might have been a need to for carbs. After I'd had my PICC line flushed I often fancied a McDonalds-I hardly ate them prior to chemo and haven't had one since! The nurses said it was fine, I think the main thing was that I was eating. xx

Member

Re: January 2019 chemo starters

late one here... first EC on 08.01 have 3 more to go then 4 pac. Spending time moistursing my nails with jennifer young definate beauty nail oil as read good things about it online. I cold capped - used large for better coverage even tho' I'm average wig cap size- and tied a pair of woollen tights around my head to keep it on - felt very heavy and my neck ached like hell and my face was all squashed I had it on so tight. Let's see what happens. FWIW, I'm using vit d oil on my scalp at night and minoxidyl in mornings - if you read about this online there are mixed results so I am aware NONE of it guarantees anything! I bought waterans shamppo and conditioner and planning to wash gently 3 times a week or i think my hair follicles will get clogged. I don't suit short hair so figured i have to throw everything at it and then i know i gave it my best shot whatever happens. I had nausea which disppaeared after taking EMEND anti -sickness but then it came back later in the days following my initial chemo. By day 5 it went completely. 2 days constipation from steroids and i got prunes in and drank a fibre solution - macrogol - which come in sachets and that sorted it. Nothing else to report so far - so lovely to read everyone else's journey too xx They told me at the hospital i can't eat live yoghurt while I'm on chemo and I am now convinced I'll get thrush Smiley Sad(((

 

 

Member

January chemo

Hi Ladies, I've been jumping between threads. I see my oncologist tomorrow, I've already had a mastectomy 13 November and lymph node clearance 13 Dec . It's good to be able to see what the effects of chemo are but a bit nerve racking too. I feel like I'm in limbo don't really want chemo to start but wish it would hurry up so that life can start heading back to normal, I've been off work since my diagnosis in October due to risk of infection, due to other problems had bloods taken and my own doctor has said chemo could possibly be held off white blood cells are low cholesterol is 8 and thyroid aren't good any advice please x
Member

Re: January 2019 chemo starters

Hi , I had picc line put in on 3rd January prior to my first treatment. I requested it as have dreadful veins and didn't want the additional stress of them not being found a vein. It's ok, procedure wasn't as bad as I was expecting, it was a little uncomfortable for a few days but is well dressed and taped down and the the nurses supply a loose sleeve so it doesn't catch in anything. It's surprising what you get used to in all this. Definitely buy the limbo picc line waterproof cover to make showering so much easier it's well worth it. Some hospitals supply foc, mine did but only had super slim size. Hope that has helped you.

due to have second taxol this week , can anyone tell me how the side effects are do they get worse. Last week was ok and bearable but anxouis re this week,

Member

Re: January 2019 chemo starters

Been a bit off the radar since Thursday, and wow, what a busy thread this is!!! I have a lot of catch up reading to do, not to mention thanks to give to those who helped me feel more in control by offering advice and tips - thank you so much!!!

So, first FEC is done and, apart from a swimmy head and ridiculous tiredness, I seem to have managed ok.

I did the cold cap, which surprised as, after just 2 minutes in it was unbearable. My husband set a 15 minute timer on my phone and I kept watching it to get me through the worst bit and, once the nurse was there administering my reds and whites, I was less aware of it.

Must find sone unscented conditioner to take though as Herbal Essences was slathered on for the cold cap and the smell made me gag terribly. Smell has affected me massively, and so quickly too, which I wasn't expecting.

I've not managed much to eat since the end of the session, and I've struggled to know what I want. I've pretty much existed on whole grain cereal, wholemeal toast, fruit and sone soup. Sweet stuff doesn't appeal at all for now.

Could really do with my tummy sorting itself out though or I'll be struggling. I'm eating dried apricots daily and taken 2 doses of Senna Max Strength in the last 48 hours, to no avail. Is that TMI?!!! Eating less and sleeping as I have been won't have helped but I haven't been able to do more.

I've been asked to go in after my next treatment to have a PICC line. Maybe I'm being silly but win't it keep catching on clothes etc? Can it be taped down? I know it's not a huge thing in the grand scheme of things but a stringing arm from catching it on everything when I dress/shower/turn in bed etc sounds quite unpleasant. Has anyone else got one?
Member

Re: January 2019 chemo starters

Thank you LB and you too xx
LB
Member

Re: January 2019 chemo starters

👍💪 hugs 🤗 to all xxx
Member

Re: January 2019 chemo starters

Yes, I felt rough for the first week too. I have got 5 days to go until my next”infusion”😵 and although I’m worried, at least I know what to expect this time🤞 I have been making the most of my time going out on my bike and walking most days and eating well. I “braved the shave” yesterday. Exactly two weeks to the day I woke up and my hair started to shed. Quite distressing even though I was expecting it. I haven’t gone for a Sinead O’Oconnor, more of an 80’s sharp flick head , with a very short undercut. It looks quite stylish and I definitely felt more liberated, not so distressed. I went with a good friend to the barbers. Barbers know how to do a good short cut and it only cost me a tenner. I liked the straightforwardness of the barber shop. Men are straight forward, no prying questions and consequently no tears. 👍Sadly, it will be a Sinead O’Connor in the next week to 10 days I guess and then baldy here I come 😥😥😥 My sister tells me I need to get my nose pierced again and a pair of big hoop earrings. Ha ha ghetto girl at 49 🤣🤣🤣🤣 Stay well and up beat ladies. Strength in numbers 💪💪💪💪😘
LB
Member

Re: January 2019 chemo starters

B74 thankyou 😊
B74
Member

Re: January 2019 chemo starters

Yes I totally felt like a dead battery! (see my post on 10 Jan for example). Feeling basically normal again now... there is definitely hope!!
LB
Member

Re: January 2019 chemo starters

G thankyou you have given me hope x
G
Member

Re: January 2019 chemo starters

Hi LB, yes, dreadful however at the end of day 7 and all of day 8 (today!) I am suddenly back. I still feel different etc however it is amazing how quickly I feel so much better...hopefully you experience this too🤞
x
LB
Member

Re: January 2019 chemo starters

Hi I'm on day 5 after first chemo - did anyone else feel like a dead battery - no go in me at all :-( 

Kip
Member

Re: January 2019 chemo starters

Hi all, steroid blues is a definite...  I always had a ciup!e of really teary emotional days once they had finished.... Famiky got to know when to tread carefully.... On the T part the steroid regime is different and i dont think i got so weepy.   It helps to know its a nirmal thing

G
Member

Re: January 2019 chemo starters

Thank you for this B74, I will most definitely have a read! x
Highlighted
B74
Member

Re: January 2019 chemo starters

G after such a rough week would you consider trying fasting?

I had nothing but water (& a little bit of broth for minerals) for 48 hours before the 1st infusion. I was disappointed that it wasn’t a ‘magic bullet’ and I still felt wretched - but I feel like on the whole I’ve got off pretty lightly. The acute horribleness only really lasted a day or two then I started to improve. I only took anti-nausea meds for the first 48 hours. I’ve continued to have slight queasiness, but just eat small amounts regularly and am ok. No mouth sores, diarrhoea etc and have been going for an hour walk every day.

I read everything I could lay my hands on about fasting (Longo research papers etc) but was actually more swayed by anecdotal stuff incl. this article in the Guardian (I ignored the hair replacement advice!!): https://www.theguardian.com/society/2016/jun/03/how-to-get-through-chemotherapy-decca-aitkenhead-can...

And this excerpt from the ‘Science of Fasting’ video: https://youtu.be/MnUq_H7zjXQ

Anyway... just something to think about. There’s no doubt that the fasting itself is challenging & not very pleasant, but I’m still going to continue, partly because I’m now terrified to experience side effects without it!!
LB
Member

Re: January 2019 chemo starters

G and B74 thankyou for mentioning the dexamethdrone - now I know why I feel like I do. G it’s good to know you’re feeling better - I hope to pick up in a couple of days too.
G
Member

Re: January 2019 chemo starters

Hi all, in the last two hours I have started to turn a corner and feel less nauseas, really weird how quickly I suddenly feel so much brighter! It is exactly a week since my first EC where I started feeling dreadful straight away but if this is the corner turned then this seems doable next time as I was starting to have my doubts! Hopefully now it will just keep improving until the next round🤞

B74, yes I think you are right, I was worse emotionally after finishing the dexamethasone - well noted, thank you! I guess I/you can plan this in for next time and might be more equipped to manage it or at least those around us might.

Hope everyone’s weekend is okay and massive hugs all round from moi! x
Member

Re: January 2019 chemo starters

Sunnydaze and stuck at 14, I'm a teacher too! Smiley Happy What ages do you teach? I job-share a Year 2 Class. I went back in September after having 11mths off! Returning was a bit of a shock and I was worn out by playtime the first week! My stamina is gradually increasing now, but I've cut down the hours I work xx 

Member

Re: January 2019 chemo starters

Helen, I hope chemo was ok today xx

Member

Re: January 2019 chemo starters

Hi LB, glad first chemo session went ok xx

Member

Re: Newly diagnosed starting chemo 8 January

Hi LB, I've been thinking about you, hope Tuesday wasn't too scary for you? Hopefully it went well and your haven't been too unwell xx
LB
Member

Re: January 2019 chemo starters

Hi I’m a couple of days after my first chemo session. It really wasn’t too bad and the nurses were lovely and so caring and answered all my questions. I came home with an enormous bag of drugs - the difflam mouthwas is brilliant for the craggy mouth. I had a friend who has had experience at self injection for dvt and she supervised my first jab. Her tip and it works is to pinch the roll of fat so that it hurts and then you don’t feel the needle. Good luck to all.
Member

Re: January 2019 chemo starters

That's good advice 're unions. I'm just home from being told I have to wait a week to start because I have the tiniest bit of my wound still to heal. Feel blue :-(
Member

Re: January 2019 chemo starters

Yes, I’m a teacher too stuck at 14 and like you I was diagnosed in August. I couldn’t handle returning to work with all of the emotional rollercoaster going on. Thankfully, like you had accrued good sickness benefits and I am currently taking 6months full and 6 months half pay. These are terms and conditions that have been hard fought for and I would hate to lose these benefits. The pay isn’t great, but the benefits at time of need are there. I feel really sorry for any of you ladies that aren’t covered by any sickness benefit and have no choice but to work. Financial worries are horrible, especially with the added worry of cancer. I want to give a shout out here to The Unions and one of the good things they do is if you are struggling financially and down to half pay or no pay and belong to a Union, your Union will have a Benevolence Fund. I know my Union does. You can apply to this fund for some financial assistance. My Union rep advised me that this is what the Benevolence Fund is for, for ladies like us. I hope I can help some of you, by dropping this information here. Get on to your Union...
Sunny daze xx
Member

Re: January 2019 chemo starters

Hey Mama JuJu,
I’m in Scotland too. I was allowed to get any wig I fancied. I thought the free ones would be like rugs 🤣 but they’re not. I had a very big choice from a lot of different brands. Good luck. It’s quite a thing trying on wigs. My hairdresser took a couple home and I showed my husband and kids. I said to them in preparation “now don’t laugh because I’ll just cry” anyway I tried one on and we all laughed, a lot , especially me!!!! It actually felt really good to laugh because laughter has been so thin on the ground of late. Anyway, I took the wigs back to the hairdresser and went to a different wig shop with loads of choice. This time I took my husband and we chose a really good one together. Good luck Mama JuJu I hope you rock your wig. Xx
Kip
Member

Re: January 2019 chemo starters

Hi all, just a quick thought about nail polish!   I painted my nails with dark nail polish from teh start of Fec until the end of T... its supposed to help prevent damage from UV light I think.   My chemo nurses told me to paint them with clear when I went to chemo just so they could have a check on them.  It usually is the T part of chemo that affects the nails I think... mine have lots of ridges on them (you kind of get one each chemo I found) and then white bits at the top eventually became very dry and brittle.  Only the last couple of weeks (3 months after finsihing chemo) the white ends have all snapped off quite low, not sore at all just very short nails, so hopefully now they will begin to grow again.  Some ladies do lose nails towards the end of chemo (toes or fingers) but have all said they aren't sore once they are gone and there is always nail growing underneath.  Nail polish will help to keep them in place and a bit more sturdy.

Have to say you all made me smile with your tales of all the things you took into chemo for your first one... I did exactly the same... laden down with things and only ended up using my water bottle and sucking a few sweets.  Though I did take a friend or hubby to chat to.  If you come to have T (docetaxol) its really useful to suck ice lollies whilst its being administered (its usually by a drip) as this stops it burning in your mouth.. I used to take a box of lollies and get through about 3 or 4 a session but the hopsital also had some.   Might help with the FEC too if it makes you feel nauseous?

Kip

x

Member

Re: January 2019 chemo starters

B74 I'm a teacher and had my diagnosis at the very end of August, I haven't been back to work at all. I've been told not to during chemo and with the emotional toll and then the physical issues after surgery there was no way I was going in. I'm very lucky that they will pay me for 6 months and then half pay for 6 months after that. Hugs to anyone who has to work - I really feel so lucky. Xx
B74
Member

Re: January 2019 chemo starters

PS G - you didn't recently come off dexamethasone/decadron did you? I was in a pit of despair for a couple of days after that

B74
Member

Re: January 2019 chemo starters

I've become the most apathetic creature in existence. It's not a lack of physical energy (I can go for a 1 hour walk without difficulty), but all the oomph has been stripped out of me. I never used be be someone who could sit and stare blankly at nothing for an hour, I was always Go! Go! Go! Although I do keep just falling asleep on the lounge, so tiredness must be a part. I'm beginning to really wonder who/what I am. 

 

I take my hat off to those of you who are working through this. I'm on 3 weeks sick leave at the moment and really debating what to do after that. I've been at the same workplace for 18 years and have accumulated a LOT of sick leave - so it wouldn't be a problem to take a break until I'm done, at least with the horrible AC part. Plenty of people have told me to just take sick leave and focus on getting better. But I'm not focusing on getting better, I'm focusing on a blank spot about 30cm in front of my face. At the same time I'm not sure I'd be any use at any kind of work except maybe licking envelopes - which is about as far from my normal job as you can get (I'm a project manager).

 

What is everyone else doing about work?

Member

Re: January 2019 chemo starters

Hi All,

 

Thanks so much for all the information, it has been invaluable and to meet you all as well.

 

I hope the Nurses can tweak my meds slightly so I am not as sick the next time. 

 

Kip, thanks for the info on the T. I will be getting Docetaxel.

 

I have had such a sore tummy, unfortunately it is normally very sensitive and I try to avoid tablets at the best of time but now I am like a walking chemist 😂😂😂😂. Needless to say it has certainly taken a beating so the Oncologist put me on a 2 week course of Omeprazole in the hope that it will calm down the stomach and acid reflux. Oh the joys of having chemo!!!

 

With regards to the bag packing for getting my first chemo.......it was hilarious. I also took everything but the kitchen sink. Pillow, blanket, sandwiches, iPad, phone, slippers the lot and I have to say I was so disappointed when I didn’t use one thing apart from the water bottle I took in. The nurses were in stitches. I was only in for an hour and back out again. I am known to carry quite a lot of extra luggage when I go places. 

 

I have my wig appointment on Friday, I am taking my Mum and some friends just to lighten it up a bit. Let’s hope one catches my eye. I am in Scotland so I do get a wig on the NHS, no idea what they are like mind you.

 

OK, so I think I may have prattled on quite enough now and I should really go to sleep.

 

I hope you are all doing well (as well as can be expected). I do really appreciate the cyber chats albeit that I might not be on all the time. 

 

Take care and lots of love xxxxx