Hahaha - Alex, that's awful - It's a good job you have a sense of humour.
It is scary waiting for your results, you have your operation and for a while you feel nice and safe. Then the waiting period takes you right back where you started of being scared and worried. Sending you big hugs.
Good morning lovely ladies,
Ali - I bought some eyebrow templates just in case I lose my eyebrows. I tried them at the weekend and ended up with a mono-brow. I'm just not good with this makeup lark, I might be joining you with the balaclava. I have to have my bloods taken on the Tuesday as I go in on the Thursday. I'm a bit peeved about my bloods - I live 5 mins walk from the Doctors, but don't do bloods on a Tuesday and the next Doctors who are 5 min drive away don't do them either on that day and won't make an exception for me. So now I have got to drive all the way to the hospital, just to have my blood taken. It would be so much easier if I could do it the same way you are doing it.
Sarah - what is a hickman line and why are you having it? When my Mum had chemo she lost her armpit hair, nose hair, ear hair, leg hair & eyebrows. Her leg and armpit hair never returned.
Strudel - I hope your zapping goes o.k. today, are you still suffering headaches?
Emily - When do you start your radiotherapy?
Jo - I was so pleased when they gave me the Emend - I think I over-acted a bit to much though, as the Nurse started saying that psychologically I had to get the idea of being sick out of my head. Even my sister thought I had a problem. I had to explain to my sister that I just wanted the best anti-sickness pill, I wasn't really that frightened.
Lexxy - how are you today?
Jane - How many rads have you left now? I hope you're o.k.?
Elizabeth & Alex - how are you both? when do you both go for your results?
Emma - how's our double mx warrior queen? how are you today?
Helena - How are you on this fine, grey morning. Isn't it today you are doing more hours at work.
I hope you all have a lovely day today.
Ali - That was so funny, I was laughing so much, I had to tell hubby, who burst out laughing. It's the comment about noticing the bath water reduce, that had me in stitches. You are the best tonic ever in the morning.
lol! Ali I am NEVER going to be able to get in the bath again without thining about that
Morning all, hope you are all ok, I have my cheery head on today, slept like a log and my boss isn't in
Lexxy, I'm not far away of you need a chat and a coffee, or someone to keep you company. xxxx
Op guys, how you doing? Not too much I hope??
So, I thought I'd share my friend's story of woe. It really was my friend, not me.
She was diagnosed with a long term condition just before Christmas. As part of her coping mechanism she is concentrating on relaxing, so has switched to baths from showers and taken up yoga. She was telling me that so far, she's feeling pretty good, but she's developed some further problems. One of these is some stress incontinence, particularly mid-morning. She had to see her gp and mentioned this to him. He told her to take two urine samples to check for infection. One from her first pee of the day, the second from a mid-morning pee, ideally before she'd wet herself. She went back today fro the results. Her gp told her the early morning sample was fine, no problems identified. The second sample was......90% bath water. Turned out that as part of her relaxation regime she'd been doing pelvic floor exercises in the bath. Every morning she's been 'vacuuming' up her bath water, only for it all to reappear at around 11am. Apparently her doctor thought this was so amusing he was threatening to write a letter to the Lancet about it!
So Sarah, without being coy. All my pubes have gone. Plus armpit hair. I had to shave my legs a couple of times, but pretty sure that's stopped too. It's odd, even the soft downy hair on my arms has gone. It's the whole secant apart from lashes/brows so far.
Susan, GCSF are the injections some CCGs prescribe routinely after chemo. If you have them, they mostly seem to be self injected under the skin, though some people get a single shot intravenously. If she didn't mention it, you probably won't be having them. Some people get stressed about this, but none of the London hospitals use them routinely. They just top you up if your white cell count goes too low. I don't think you need to stress about it. Sounds like you're going to be very well looked after.
So I have chemo three next Wednesday too. Bloods at 9.30, then I get to wander around Borough Market and go back at 11.30. We might end up finishing on the same day Sarah and Lexxie, are you both having six rounds? (Sorry, I'm too lazy to trawl back and check). I have to do 8, so looking at my last two be at the end of May. Then I get my op and rads.
Hope everyone's ok. I've just had a disgustingly healthy supper. I blame Strudel's fat busting thread.
Ali - what are GCSF injections? The Nurse did say that I would have been able to drive home that day, but it will probably hit me a lot later in the evening. When I said I wanted to work, once I felt better, she just said, no you're not, you have no idea how you will be. I was a bit stunned as I have been following you (my chemo idol) and you were up and coping quite well after your first one. I accepted that I might be sick for a bit longer, but couldn't see why I couldn't work on the second & third week if I was up to it. The problem is with me, is that I love my work. Not only that, it makes me feel normal again.
Sarah - I do feel ready, but I have had since 29 November to get use to the idea. These 8 weeks of waiting has got annoying, and now that I know my dates, I am in control again. Even to the point that at the vets tonight, they even arranged Lincolns next appointment around my chemo dates. I wouldn't have been able to do that before. I'm cutting my hair to shoulder length on Sunday, so that it just goes in a loose ponytail, as the Nurse said that the length of my hair will be too heavy for my scalp once the chemo kicks in. Then I will shave it when I feel the need. I have already got an eyebrow pencil, just in case I lose my eyebrows and I will just wear my eyeliner a bit heavier if/when I lose my eyelashes. I have bought ice pops, ice bag, soup, tins of fruit and sparkly water - I'm as ready as I will ever be. 😂😂
Thanks Helena, she was only a little thing, but she had me promising to abide by her rules 😂😂
Thanks Strudel - I am the sort of person that would probably overdo it, but only because I want normality back as soon as possible. I did say that I would do everything she asks, as she knows what she is doing. I followed their rules when I had my mx and have full use of my arm and no problems so far. How is Charlo doing? How are you feeling after your second zapping session?
Emily - I am so tired after work, I am asleep at 8pm. (One of the reasons I miss everyone's posts in the evening) Hugs
Lexxy - I'm so sorry you're having a bad time at work, especially on top of having to deal with the fact that you have only just had the chemo treatment confirmed. It's a lot to take in, without work being **bleep**ty. Big hugs to you.
Emma, Alex, Jane, Jo, Pam & Elizabeth - I hope you are all o.k.?
(Please accept my apologies is I've missed you, I'm getting tired and need a nap)
Have a lovely evening everyone
Susan, so glad you had a great day. Weird in the scheme of things but we get it! Charl's on FEC T. I posted what she said about FEC and it's do-able cos she won't mind me saying that she's not the toughest. Well, she wasn't before all this! I'm glad your hospital's being tough with you, you need to look after yourself and take time for yourself and you seem like the sort of person who needs this to be enforced!
Lexxy, hugs. Your work place sounds truly **bleep**e from all you've said. Do you work in Brum or have I made that up? If you do, I'll be back before you and can go pay them a visit if you like. I'm good at arguing 😉. I'm really glad I'm not working. I have exactly the same sick policy and pay that Ali was saying she used to have. However, we also do disability paid special leave which has been authorised so none of my time off so far has counted as sick leave yet. I'm dreading going back, from a zero hour week to a 50 hour week plus a minimum of 15 hours travelling on top. I don't even bother adding up the evening and weekend work. I feel sick just thinking about it.
Interesting coil story. . If it was only in 3 weeks then more likely to be your saviour than your foe. It's so weird how things pan out. Em finding a lump in the other breast that was nothing, me having horrific pain (but cancer doesn't hurt don't you know, yeah well for me it did and a bloody good job too.)
I appear to be heading for a rant so will sign off. Hope all the post op ladies are doing ok. Emma, hope you're having a better day x
Don't be scared. Honestly, it's really not that bad for most people. So losing my eyebrows and lashes are are my greatest worry. (Well, apart from the obvious). I have mine still after 2 rounds. I think my brows are a bit thinner, but I'm using some mascara type stuff on them. Apparently, unlike hair, not everyone loses them. On the other hand sometimes they fall out after chemo has finished. (Which seems unfair and bit mean!)
If mine go, I'm thinking of wearing a balaclava.
OMG that is amazing and your nurse sounds incredible, you are not going to be able to get away with anything with her around, which is the way it should be 🙂 🙂 It wont be long until it is all over with xxx
So glad Susan that it went well. Brilliant that you got Emend, well done. And they sound like a lovely team. Actual chemo day is one of the things I look forward to! I know it's weird, but the atmosphere is nice and everyone is very sweet natured. It must be something about that area of nursing.
Lexxy, chin up sweetheart. Sorry, that you feel isolated at work. Hopefully it's because they are inept rather than horrid.
So those two posts got me thinking about different attitudes to working through this, both from firms and from the chemo teams. Susan, it's great that they were so clear with you, but it's so far from what I was told. I haven't been told not to do anything. In London they just assume you'll need to go on public transport. In fact they assume most people go home from operations that way! I think this makes them much more relaxed about what we do when in treatment. The only thing that mine are firm on, is take your temperature every day. They give you a digital thermometer as well. They don't give the GCSF injections as a matter of course, either. I joked it's survival of the fittest at Guy's and my chemo nurse actually looked a bit embarrassed.
So Lexxy, in terms of how well I've been, I haven't cancelled any work yet. But I'm only teaching/ training face to face for a few days each month and have maybe three sets of external meetings. I've worked every day except chemo day and the following one, but sometimes it's been a few emails, sometimes phonecalls and meetings. The travel is more tiring than the work. But it's 50% my own business, so I am keen to keep it going. Also, until we leave London we have very high rent costs. I don't know what you do, but if there's any chance of working from home, I'd explore that. Most firms are ansty about people stopping and starting, but they shouldn't be unless it's impossible to dip in and out.
The real test will be next round. I've got chemo on the 15th, then am teaching three days from the 20th-22nd. I do have some back up if needed, but I'm hoping I can get through it. I'll go in by boat rather than tube, and I don't have to stand up all the way through and it's material I know and enjoy. So hoping I'll be good.
Quite a few people do work right through, but I completely understand why lots don't. If I was in my previous situation in higher education, with six months full sick pay, six months at 50%, I'd probably take the time off.
Just popped in to say I had a brilliant meeting with my Chemo nurse, who was very factual and very firm in what I can and cannot do.
I planned to be ill for the first week (less if poss) and then work the next two weeks until I had treatment again. I was told that I was not to go anywhere near work for the first three weeks after my treatment as I didn't know how my body was going to react. Only after the second treatment can I go into work. So I am bringing my computer home and all my books and will be working from home.
I have to get a thermometer, which is not to be used every day (like some women she said) only if I feel ill i.e. sore throat or a really bad headache. Then I take my temperature and I ring them. Any illness or rash that is not normal - I ring. If I'm walking the dog, I have to let people know where I am and what time I will be back. Ultimately, if I want to get through this the best I can, I look after myself and do what I am told.
I also have to get a icepack bag and take in ice lollies or ice pops, to suck while the chemo is being syringed, this can help with mouth ulcers, although if I have an ulcer, I am not to self medicate, but to ring them.
I asked about a PICC and she said that they prefer not to put one in as it is a foreign body, and as my veins are very good, they would prefer to use them instead.
Bit of a surprise on the wig front - when my Mum went for her wig, she was given a £90.00 voucher (she actually bought a beautiful £400.00 one in the end). I had to pay £68.90 for my prescription, but this allowed my a wig upto £120.00. I have paid it and I will go and have a look and if I don't want one, they will refund my money. If you are on benefits I think it's free.
But my greatest success, is that I have the 'Emend' tablets in my bag, ready to take 1 hour before my treatment. I was worried that they would try me on the others first to see how I was, but I pretended to be so fearful of being sick, she just wrote out a prescription for it.
I was taken back about how much of my time I will have to spend getting ready for each treatment. I have to go for bloods on a Tuesday, Oncologist on Weds, then they will ring me Weds afternoon to let me know what time my appointment will be for the Thursday. Good thing, is that my treatment only takes approx 45 mins.
FEC bollocks up your nails as well, but as far as she knows has never lifted them off the bed - she said FEC T is the chemo that does that.
So all in all, I am really happy - I have done as much as I can to ready myself and can't wait until my 6th one is over.
I now need to start work, so will read your comments later.
Very happy Susan
I'm having a sucky day today, many tears. Stupid work never fail to make me feel let down and alone in all this. I'm being over dramatic but I'm just going with it today. I've taken myself home to work, just going to get a couple of things done before the end of the week and then they can kiss my ass.
Susan, hope the appointment goes well today, thinking of you and hoping you get your start date. I haven't met the nurses yet, i only had the onc in the room for results, but a lovely nurse called Sarah rang me yesterday with all my dates for assessments and such. I mentioned about the PICC and how bad my veins were and she said 'Ah, are you going to be one of those trouble makers' 😄
Helena, hoping your first thursday back at work is going well 🙂
Jane, so close to the end now! How are you feeling? I hope the blistering is settling down.
Alex, Emma and Elizabeth I hope you are all taking it nice and easy today (however hard that can be to do!) and you are all feeling ok. Hope the meeting with the onc goes well this afternoon Elizabeth and it doesn't leave you too exhausted x
Ali, good luck with the bid! Sorry if you've already mentioned but how is it going working around the chemo? I wanted to try and do a few days a month, just to keep some money coming in really but I'm not getting any help from HR in terms of how to manage it. How many days are you finding you're able to do if you don't mind me asking? x
Strudel, what a pain that must have been this morning! Glad you're all done now and hope the headache is less for you today, enjoy the snooze 🙂 The coil thing, eurgh, well, I had been completely off all hormone contraceptives for a few years because the cerazette sent me absolutely crazy. But, I wanted to do something about the monthly misery so agreed to try a coil. I HATED it from the instant I had it fitted and for the next few weeks I felt terrible, i was constantly nauseous and after about 3 weeks I ended up in hospital on a drip with gastro. During the 3 weeks of sickness I also noticed how tender my boobs had become, I guess from the new influx of hormones and this lead me to having a really good feel of lefty (which was the more sore) and there was this horrible big lump. I still wonder if I hadn't had the coil and therefore this tender feeling, how long would it have been before I noticed the lump, it's scary. I also wonder whether the coil had caused the tumour to grow and that's why I felt it.
Mid week love and hugs to you all x
Well I read this thread backwards this morning and thought for a moment we had a topless photo Em!!! The funny thing is they look at bit like mine at the moment - different sizes and different colours!! 🤗.
Helena - hope your working Thursday is ok.
Stru - I had terrible headaches when I started on the anastrozole - for about two weeks I was taking pain killers before i got out of bed in the morning. They are much better now though, but I have started with pain in my hips and ankles which is a really odd ache that comes on out of nowhere, seems to be mainly at night at the moment. I've never been one for taking pills but paracetamol and ibuprofen seem to be on the shopping list weekly at the moment. I take mine at night and have hot flushes from about 2.00 am - I was thinking of trying to take it in the morning but the last week I've had flushes during the day too so don't think it will make any difference. I'm still getting pain in my breast, and unfortunately it does get worse for a while with rads - apparently it disrupts the nerve endings that are still healing after surgery.
More Physio news for you Stru too - yesterday the Physio didn't give me more exercises but she massaged the cording to try to stretch it that was, and she also massaged the parts of my breast that have tightened up during radiotherapy, and then manually stretched my shoulder out. It was really sore, but felt better afterwards if that makes sense - if anyone had told me 4 months ago that is be lying on a couch with a Physio massaging my chest I'd never have believed them!
My skin seemed to be holding up really well but I now have a sore blistered nipple and another blister coming at one end of my scar - was given some dressings yesterday, so will see how it goes.
Susan, Lexxy and Sarah - hope you are all ok today.
Jo and Ali - well done both of you. Your positivity shines through all your posts.
Emma - hope you had a better day yesterday - sending a big hug.
Alex - how are you feeling now?
Elizabeth - hope you have a positive appointment with your oncologist - don't worry about being looked after for a few days, I'm sure it's what your Mum will want to do.
will check in later - just realised I need to get a wriggle on - 3 more days to go!
Good morning everyone
Ladybowler, yes I have to do the basic exercises 4 times a day for 6 weeks.
Lexxy I was surprised by how weak I felt yesterday & slept quite a bit in the afternoon. I have been relied upon so much at home that I am getting frustrated already that I'm going to be able to do so little in the way of help for my mother.
I have my 1st meeting with my oncologist this afternoon. Another new experience! I really could do with another day of rest at home but if I'm tired when I get home I will go for a lie down
Hey, Susan, hope today goes well.
Have a good day all. I will be writing a bid (for work we have already been doing so vital to get it) and avoiding carbs (see fat-busting thread). Hope all aches/flushes and worries are trumped by good things.
Not really sure what that boob is for! lol! We found it in the health visitots cupboard along with some small balls that are for explaining the size of a babys stomach. The stomach thing I get...the boob????
Hope all goes well today Susan....I need one of your updates to keep up with everyone.
I've taken 2 Tamoxifen. I'm taking them in the evening as the oncologist said he thought people coped better with the side effects if they were going to bed...I'll let you know!!!
Thanks for your lovely comments about me, I look a bit red faced and chubby, I'm with you on the fat fab thread
Hahaha - I just nipped on here before I go and put my face on for work and the first thing I see are Emily's boobs. They are the funniest things I've ever on seen my iPad first thing in the morning.
Strudel, I hope your headache is better today.
I haven't managed to read all of the comments, as I normally read them at work in the morning, but I'm being picked up at 8:30 as I've got to go and have my bloods done first.
Sarah & Lexxy - have you met your chemo nurse yet or did you meet her at your results last week?
Thank you all for your best wishes.
See ya later alligators.
I could not work out whether it was the tamoxifen or the rads causing me headaches and I was also not sure whether is was the actual traveling to/from hospital every day. I do still get the odd slight headaches now and I have stopped rads so possibly that.
Regarding the flushes, I take my tablet at 9am in the morning and almost to time at 10.30am I have a flush which starts from my feet to my head and I go bright red, it lasts for a minutes or so and then is gone. I do have some later on in the day and occasionally at night but not unbearable
I really love my job it is very interesting, well for me anyway, I am responsible for data quality and validation. I have the best of both worlds in working only 25 hours per week.
Once you get it all started the time will go quickly, just make sure that you are kind to yourself and dont overdo things, mind you we will be watching you anyway.
so im totally lost bar a few things lol! At least when i have my rads ill be off woek so might keep up!
Stru my boob gives me all kinds of trouble, just when i thought all was good its sore and i have swelling under my arm again!
Emma, be kind to yourself hun xxxx baby wipes are your friend. i also found that sponges for washing are much more effective than a flannel. and i have a cream deodorant that my BCN said was perfect, uou can jist pit a bit on with your finger.
See now i'm lost again lol!
Had a minor panic as my fave doctor has gone awol but went to see my now 2nd fave doc, who actually referred me back in september, and she was great today, set me up to have coil removed and said just to ring with rads dates and she will give me a sick note......i also had a very sureal situation in the waiting area where everyone started talking because appointments were late and we were talking about the set 10 mins you get and they started talking about cancer patients getting an appointment on the day and i piped up, oh i didn't know that,so then it comes out I have BC and I ended up with 4 total strangers in total awe of my positivity and wishing me luck as I wondered off lol! very sureal
ok, now onto more serious stuff! i found another boob
Hi Helena, it's good to hear that you're feeling a lot better. Do you enjoy being back at work?
I've had a lull for 8 weeks now, I even started to have longer and longer moments when I forgot about BC, but it's all started again now.
It'll be good to get it over and done with.
I will let you into a secret, the only way I can do it is to have it open in another tab so that I can keep clicking back and forward, but I do use a laptop 🙂 xx
Scotty, Strudel and Jo
oops, sorry I havent forgotten you all, just trying to do a catch up on todays activity on here
Sending you all hugs
Does it say that you have to do them 4 times a day and are you doing just the basic exercises. I know the leaflet I had said to try and do them 3 times but at least twice a day xxx