I'm back from my Headstrong appt, and some retail therapy, managed to spend my m&s vouchers.
Joan and Caren the lady mentioned you both, apparently you both chose the same scarf, mine was different must admit though I don't think I rifled through them enough as just went for the first one that caught my eye, great experience though really good to try different styles of headwear, realised I'm definitely not a cap or peaked hat person and need something to give me a bit of height so have just ordered a couple of hats with chiffon scarfs from Annabandana. The wig cap left my hair a real mess, it's in such a state that it was left sticking out badly on one side, so if you saw a hot flushed looking woman wandering around Welwyn ladies then that was me. It's also prickly at scalp as well, I used to be able to run my fingers through it and it bounced back to life, now it just sticks out and is so flat. Went into John Lewis (I love that shop), got some Benefit eyebrow pencil and mentioned needing new foundation so booked in for free make over at the start of April. Also got a freebie which tried and good stuff.
Angelherts give the BCC a ring, and also Macmillan they do a very good benefits help line service.
Oh Clare send me some cheese and asparagus flan it'll go nicely with Beryls trifle.
Glad to know your feeling good as well Kika-k, the beautiful weather always helps.
Well at least this time next week I'll have had Cillitbang no 2!
Love to all our wonderful ladies.
What a tough time you are having at the moment.
Can I suggest giving our Helpline a call. They will definately be able to offer support and may be able to offer you some useful information . The are open from 9-5 on weekdays and 9-2 on Saturdays. The number is 0808 800 6000.
Very best wishes
Oh Clare you are my inspiration at the moment ! I love the "Sh!t scared diet" - that is definately what I am on at the moment and also love the Cilit Bang reference.
Del - thankyou for the injection update - I am going for it in a couple of hours. Hope you are OK - will email soon.
I have been trying to be positive but have crumbled into unstoppable tears today. The day started well as not permanently glued to loo and Ulta Sound on "other" boob and lymph nodes all looked normal - so came home feeling I could start moving forward and then I got a letter saying I am not entitled to ESA even though I worked fulltime from leaving school for 26yrs until made redundant from my employer of 16yrs in 2009. I took 3 months "off" just looking for new jobs (without success) and then had 12mths on Job Seekers before taking the plunge and going self employed in 2010. Now it turns out the 3 mths that I didn't work or claim have caused a gap in my National Insurance and I don't qualify !
My total house income is £41 LESS than my mortgage payment alone - before bills, poll tax or food etc. I am speechless at the lack of support for genuine cases when the papers are full of stories of people living the high life on benefits. I am now looking at the prospect of having to sell the house as well as dealing with this horrible illness.
All too much today - going to see doctors next week now for anxiety / depression. My medical file will be bulging at this rate!
To top it all my dogs came out in sympathy yesterday and both have bad diahorrea and BOTH had it all covering their rear ends. I just didn't know where to turn and will never be able to thank my wonderful friend enough as she dropped everything when she got my panic call and came running and several buckets of warm water later and she'd sorted them both out in my garden. Touching the unthinkable with her bare hands because she insisted that I kept on the 1 pair of rubber gloves that we had !
The kindness and support us woman are capable of really has amazed me and you ladies keep me going xx
Good afternoon beautiful women!
I have not looked at the forum for a day and a half or so (I wanted some time BC free) and can’t believe how much was there to catch up with.
Deb. Don’t worry about feeling fed up, I also feel like that some times and the way I deal with it is by talking, talking, talking to the point of boredom…….. Do try to ring the helpline, they are wonderful. And don’t forget, you are not alone, we are all here to support each other along the way, chin up, you can do it!!
CM, I like your inputs, you are such breath of fresh air!! I have also disposed of my hair with the clippers (no 3 though) in preparation for what’s to come. My neighbour did it for me yesterday morning – it was quite funny as the pup had a great time picking up hair from the floor… such love!
I can remember who said about the Brazilian on the NHS but I like that!!
Angelherts. Thanks for supportive comment. How is your son coping with it all? My daughter is also 15 and doesn’t want to talk about her feelings with anyone. You bit me there with the extra dog and cat –got one cat also but he is no trouble. The dog is just about manageable with the extra walks he is getting from the dog-walker, courtesy of my mum’s generosity!! Bless her!!
Parsnip. Have you looked at wigs in the area yet? If so where and what did you think? Funny that, no fog but glorious sunshine in Brighton all morning…. Good luck with your 2nd dose today!!
Waitingtoo. I like the cillit bang thing. I, like you don’t want to risk stray cells having a party on my scalp.
Carmy. Where about is Spain are you? Just curiosity as I am from Madrid.
I had my first FEC yesterday afternoon and it wasn’t as bad as I though - although I nearly didn’t have it because I had a tooth extraction the day before. The centre was nice and welcoming and the nurses were very helpful. Last night wasn’t too bad, I did not sleep much – have had a couple of hours late morning- had a few kind of indigestion/period pains and an intermitting headache. Today it is a bit much like it. My appetite is ok but a bit constipated already – have drunk some prune juice so hope that does the trick. I am also stocked up with veg juice, ginger beer, lots of fruit for smoothies as I am not good with fruit, frozen pineapple chunks, and lots of home made meals and soups in the freezer, sorted!! I wanted to go for a nice walk today as it is gorgeous down here, but was worried to feel dizzy so slept and read my book instead.
I am glad to see that kojak, megsmum and poppy are not having it too bad today.
Good luck to all of you starting today!!
Lots of love
Well whaddaya know, I'm making a cheese flan today with asparagus - maybe it' is a new SE.
I got my OH to barbi the asparagus last night, it takes the flavor to a new level. I also love masterchef, need to download it (since I'm in Rome). I've also watched series 1 and 2 of the great british bake off, ooh mouth salivating.
Angelherts I has SE's like you except no headache, thankfully. I had the runs and on the bright side I've lost about 5 kg in 6 weeks. I call it the sh!t scared diet, literally and figuratively.
Well, I've been rumbled, yes, its a wig on my profile pic, isn't it great. I'll change my profile for a few days to show you my real hair today (and my kids). On Sunday we have a 'hair today, gone tomorrow' barbi in the garden. My OH will give me an army haircut (No2 they call it) I want to do this with a few friends and my kids try to 'normalize' it as much as is possible. Then I'll pop on my wig as the sun goes down.
I think that hair loss, though a shock, needs to be understood (she tells herself) as temporary. I'm more concerned that the chemo destroys every last cancer cell dead, like the cilit bang ! Ha,that's what i might call my next chemo session.
Went out for a shorter walk than expected because the DN turned up to give me my first injection. Didn't hurt having it and they are going to do it again tomorrow, after that I think I can do it myself (going to try tomorrow to see how I get on). Lovely sunny day here and everythink OK this end, so far
Carolyn - I loved my Head Strong appointment, such lovely and caring ladies who volunteer their services - what would we do without them?
EBHippo - Not had any stomach problems as yet, but may be we are on totally diff' drugs, there are so many. If I don't go today as normal then I will be looking for help tomorrow. Dates usally work and I have been having some at breakfast time.
Super Sue - Not had any cravings as yet but time will tell. Just going along with what I normally eat but making sure I get fruit and veg etc. Oh how I love triffle and I haven't made one in ages, now where is my triffle bowl?
Raechi - They are going to give you a scan to check you out, which only has to be good to get a better picture of what is going on. Sometimes I think it would be much better if everyone got them. I'd certainly be putting my hand up. Now you have a date and know that things are moving along. When you get the results you will know that they're going to give you whatever is necessary to fight the good fight and get you through the other end. Keep postive as much as possible!
Telephoned a lady I know who sailed through her chemo (four sessions) and her radiation, which she finished in Feb this year. She goes every three weeks for Herceptin (may have spelt that wrong) injection until this August, she kept her hair using cold cap and didn't get any s/e's other than tiredness. Anyway, for some reason she went down with Scarlatena (may have spelt that wrong as well) and has been very poorly. She told me today that she is on the mend and virtually back to normal, just gets tired. When she found out that I had been diagnoed she was so postive about everything, having had it before some years ago. Nothing phased her and she's another one who tells me to be POSITIVE - sorry don't mean to preach! If she can get through being so ill then it must have helped her a lot!
I don't know if anyone else takes them but if i feel a little indigestion or reflux coming on I suck a Rennie. I asked the chemo nurses and they said that's fine and they are working.
Hope everyone else is OK and making the most of the lovely weather, if they have any and can get out.
Hello my lovely ladies
Had funny feeling in my head yesterday, like someone was trying to pull it out, and god it hurt to put head on pillow. I'm hoping it's just the fact that I had wig on for a long while yesterday, as the wig shop told me to do that, and when I took it off it was killing me. Could also be more realistic and first signs of hair loss to come.
Fab to hear from you Choccie and thanks for the reply. It's a pleasure to know we are also helping you.
Angelherts a definite for meeting during radio, both Caren and I have it at Mount Vernon and I'm sure we will all be there at the same time.
Hoping your feeling a little more upbeat Lydia, but remember we all have low days. I've just received a flower card through the post from a colleague, and little gestures like that really perk you up.
Hoping those of you starting soon begin to see how this is doable, look at Beryl nervous before but I can read the confidence in each new post. It's great.
Rae sorry about the lymph nodes, but chemo will sort that out. I too had a CT scan and apart from having to drink the awful aniseed drink beforehand it's just like having an xray and definitely gives you peace of mind. Re meeting, we all have oncologist appointments between 11 15 and11 45 on Minday at Lister hospital in Stevenage, maybe meet in reception it would be lovely if you could join us.
Supersue my mouth is watering at the description of the trifle. Glad you're feeling good. I love Masterchef, Shelina to win!!
You sound good as well EB Hippo, the sun is now shining here in Hertfordshire.
Off for my Headstrong appointment, then to see if I can stalk Joan or Caren 🙂 I'm off to get some eye brow pencil and sit in the sun.
Love and hugs to all you fab ladies
Keep thinking this time last week I didnt know what to expect and can thankfully say that apart from a couple of nauseaus moments and one really tearful day, if thats the worse then I can cope. Tried to go without anti sickness meds yesterday but needed a dose about 10ish, asleep for 11.30 and woke up just before 10 today.
Furry mouth has almost disappeared so hoping this is the start of the good couple of weeks ahead.
Was told that i couldnt take immodium but can anybody recommend anything else, seem to be going to loo 3 - 4 times a day which for some of you ladies must sound wonderful but my stomach doesnt seem to like much in it at the moment. What goes in doesnt stay put too long if you get my drift.
Hoping the sun comes out soon, have changed all the beds in a moment of madness and want the house filled with sunshine and fresh air.
Sending hugs to all my new friends xxxxx
Well i think i got an insomnia SE, only slept 3 hours yesterday afternoon but sat here at 4.45am awake since 5pm browsing the web as bored and wide awake, must be bad looking on Dfs website at that time of day, not even buying a sofa. lol.
Other than that i feel good, didn't get to see granddaughter though, as other daughter came round with 2 grandsons i was shattered after hence the 3 hours afternoon kip.
Ginger a few of you are mentioning, Levi Roots has a lovely ginger beer a 2 litre bottle, well worth a try, its now my evening tipple of alcohol off my menu.
Fancying foods for some reason i keep fancying cheese and onion pie, thinking of making a home made flan this weekend, with extra strong cheese, but for now i had a Hollands.
Making my darling a home made triffle too he finishes tonight for 10 days, (pours rum over swiss roll to make it extra special) 🙂
I not good fruit eater so got through 2 smoothies need my 5 a day! oh and crispy lettuce lol
You all mentioning having to your injections yourself, i am lucky a DN comes round 24 hours after each chemo to do mine, must be wealthy authority in manchester!
Got lots of forms to fill in, so OH on late shift its my evening task whilst watching Master Chef final.
Hope you all have a good day, and keep the constipation at bay., lol
Group ((HUGGGG)) XX
Well hello my lovely March ladies,
Its great to see so may of you doing so well! and i have to say some of the posts have really brought a smile to my face.
Looks like i will be joining the 'Marchies' - i got my sentinel node biopsy results and i do have it in my lymph nodes 😞
So now they want to do a CT to see of its spread any further!
I have a date for chemo now too - i start on Friday 23rd at 08:30 in the morning! Its all happening now huh!
I asked some more about the Herceptin too - it turns out after the first one someone comes to my house to give it. Has anyone else heard of that or having that?
And i am definitely going to be having the GCSF injections - they have been presribed already.
Well is a beautiful sunny day out - i'm going to get out in it whilst i can.
Big hugs to all,
Good morning everyone,
Well, I had a fantastic nights sleep with the help of sleep tablet they prescribed, as I'm a light sleeper. Went to bed at (9.00 and up at 5.00) can't be bad. Pleased to say that the anti-sick drugs have worked so far and drinking ltrs of water must have helped too. Going out for a walk with hubby before the District Nurse come to my first injection for the white cells. Got to have a series of eight so I'm told. Will let you know how they affect me, hopefully it won't be too bad.
I know it's easy for me to say but I have tried to keep as positive as I can throughout this time. My twin who is a BC survivor over the last 20 years has instilled this into me. She said my body doesn't need any negative thoughts going forward through treatment. Inner strength is what is needed to fight things. Sorry, hope I'm not offending anyone by typing this. I understand what she means but also understand that thinking is not doing in many cases. I'm trying the cold cap and anything else they want to throw at me, not hapy about all of this, who can be - but we have to get through it to come out the other end. TRY AND BE POSITIVE IT'S GOT TO HELP!
Going out for a walk before the DN gets here.
Love and best wishes to all
ginger biscuits and croissants for me. Nothing tastes good for me yet but its not 24 hours but dont feel as bad as anticipated x
I've just done a big online shop too, everything ginger, ginger and lemon tea, ginger beer, ginger biscuits, you get the picture! Apart from that i've just ordered everything as normal but have ordered extra things where possible to save me having to do another shop too soon.
Fiona, thanks for the encouraging words, it always seems like other people are more positive or coping better than me, but looks like we're all the same beneath the surface.
Love Lydia x
Sorry if this ends up appearing twice - I thought I'd posted but my message vanished. Brain not in gear!
I don't post on this thread very often (I can't keep up with you all) but find reading about everyone's experiences really helpful. I had my first chemo (EC) on 5th March and seem to have been fortunate enough to have had minimal SEs (tiredness, slight queasiness, bowels on strike for a couple of days). I do, however, have some horrible anxiety problems which I think are due to having been diagnosed with secondaries but that's another story and I've posted (and received help) elsewhere on these boards about that.
I mainly wanted to respond to Angelhert's query about the Filgrastrim injections. I had to self-administer these too (days 2-8 in my case). I know that some people have really struggled with these and my heart goes out to them, but for me it really wasn't too bad at all. And that comes from someone who managed to really work herself up about it - especially before the first injection! The needle is very fine and short. I'm quite thin but still managed to easily pinch enough flesh for the needle. Putting the needle in was actually easy I barely felt it, just don't hang around thinking about it too much. Pushing the plunger in on the syringe took about 5 seconds at most. I then left the needle in place for another couple of seconds just to make sure all the contents went in (I don't know if that's necessary I just did it to be sure)and that's it, done. When you remove the syringe the needle automatically retracts into the body of the syringe so there's no danger of pricking yourself again. I have been lucky and had only slight pain as a SE of the injections (not even worth a painkiller in my case). Apologies to those of you who have had a hard time with the injections but just wanted to say that, for me, it really hasn't been that bad. Good luck with it Angelherts, let us know how you get on. I'm sure you'll find it as nothing compared to the trauma of dropping your phone down the loo.
Best wishes and minimal SEs to all!
It's really foggy here, hoping the run to nursery goes ok, need the boy off safely today. angel hearts, I have a PICC line in, the initial bit isn't pleasant, I won't kid you, but once they get the guide in they give you a local anaesthetic so you can't feel anything except some pressure. Then you have to be x-rayed to make sure it's in the right spot, but that's quick and easy. The chemo itself is then really stress free and I am glad I have it. It gets a weekly flush and dressing change by e district nurses but that's reasonably straight forward (when they can decide what they're doing!) I got myself a LimbO elbow cover for showering which makes life really easy getting showered quickly and with minimal fuss (essential with a hectic 4yo running around!) so I am glad I had it done. The district nurses also take my blood tests through it and my scan tracers have also used it, it has saved 5 needles in the fortnight it's been in, has to be good. I also have the filgrastim injections. they sometimes sting when they go in but I think that's more when I'm trying to get it in too quickly. I had bad pain in my hips and thighs towards the end of the eight days but it was lessened with painkillers and went quickly after I stopped the injections. I would mention your stomach problems to your team as they may be able to give you something that's milder on your stomach. Always worth asking. Hopefully you got a better night's sleep last night.
Right nursery run now, good luck anyone starting today and hope everyone else has a good day
Hi CHascat I am starting the day after you next week - is anyone else starting next week? Those of you have had the first one what did you fancy eating? I want to do an online shop but have a complete mind blank as to what to get!
Good luck to anyone today starting or having their second one. Love to all Georgie xxxx
I had my 1st juicing on Monday 12th - FEC100 (have this 3 sessions, then move to Tax for 3 sessions). Seemed a long day as arrived at 10am but infusion didn't start till 3pm and finished by 4:30pm. Only issues were that my great big ugly bulging veins on my hands that make me look really old are NOT apparently juice veins at all and I will need a PICC line.
So first question - what is it like having a PICC line fitted and does it cause discomfort afterwards as I am wimping out already !
I got a blinding headache within 30mins of it going in and that stayed until 12 noon the next day. Apart from that I felt great initially at home and even walked the dogs but about 9pm I started going downhill and got terrible period type pains / back ache/ really queasy feelings. I found I kept doing little burps that actually helped relieve the nausea but a couple of times gave a mouthful of rather unpleasant stuff. Never actually sick though.
Stomach pains really awful from 10pm ish and couldn't sleep because of headache. Stomach / bowels / queasy / Worst time was 1:30am for an hour and then finally slept from 2:30am till 6am.
Felt much better Tuesday once headache lifted and queasiness controllable but got to 9pm again and all terrible cramps and bowels. By this time I had taken Sennacot and am starting to think this didn't help. Pretty ill from 10pm - 2:30am SOLID. Then slept till 7am when it started again but milder till 9:30am when I then slept for 2 hrs.
Since midday things seem better and I've really been careful with food as everything still going straight through me but if this means my body is reacting quickly and these SEs will stop in the next day or so then it's doable.
Pharmacist came round with tablets before I left and dropped the bomb shell about injections. Nobody had told me I'd have to do these and I'd even asked about them at the Pre Meeting so really freaked out and practically refused to do them but basically told it wasn't an option and all ladies on FEC-T are now having to do them from 1st session (and yet my bloods might stay fine ?)
GP surgery doing first one tomorrow at 6pm and Friday night but then I have to do them myself - really worried about being able to do them alone and also the bone pain SE's.
Is anyone else doing OK with them. It's Filgrastrim 30MU taken daily from day 4 to 10. Any tips of coping with these added SE's please ?
Going to try and sleep now and pray I see more bed than toilet tonight. ;-(
Have been following all the threads over the last few weeks dipping in and out but rarely posting, I think I am a reader rather than a writer!
Am currently on day 10 and so far the only SEs I have had are tiredness, bad heartburn and 1 day of horrendously bad wind!! (Got my own back on hubbie for 30+ years in one day LOL). The tiredness seems to come in waves and really does knock me out.
I think I am starting to lose more hairs than I usually do but am waiting to see how it goes next week before making a decision on whether to continue with the coldcap.
CM & Kojak - did you have your portocath fitted under general or local? I was wondering why you felt you had something in your throat?
CM - even before chemo I would not have been able to walk 17 km! I thought I was doing well with 2!!
Keep up the good work ladies, it is certainly inspiring to read all your posts.
I am envious of those of you who have had sunshine the last 3 days as here in Suffolk it has been very murky.
Good luck to those who have yet to start and hope everyones SEs are small. Sweet dreams xx
Wow the thread has grown so much. I have so many "Hi's & Replies" so will do those first - and do a second post with my own update on my first juicing.
PLEASE OFFER POSITIVE VIBES on my juicing update later as am a nervous wreck at moment ;-(
PATCHIT (Joan) - Well I graciously hand back the trophy to you for being able to say SE the most times in a sentence - 7 times However I might well win it back soon as I've since found out I am joining you on the Filgrastrim injection nightmare and totally freaking out now ;-(
Glad to hear it's settling down for you and that you are managing to work a few hours as well. Pleased to hear you like your wig. I have got my referral to Hair and Ware and go on Saturday.
Jackie7698 - Welcome aboard Jackie, I used to Live in Milton Keynes until 4 years ago and am a single parent. I had my mum stay the first night because I was worried about being ill but actually she's totally deaf without her hearing aids and my teenage son could sleep through a bomb blast, but it helped and I understand your concerns. I think the fear is worse than the reality.
WAITINGTOO (Clare) - I've stolen your ideas now and using Word ! Can I ask about your profile picture. Is that your real hair or are you showing off your new wig ? I really love it and find myself looking at everyone now and trying to decide if they are wearing a wig - is it just me that's doing that ? Of course if that's your real hair then I've probably just insulted you LOL Glad to hear you have bounced back after your first session.
Di - I completely understand your fears. I am off for an ultrasound on the "other" side tomorrow because I've had painful lymph nodes on that side for past week and my ONC is now listening to me and wants to check they haven't missed anything. It's terrifying how quickly things can change and I don't know how the secondaries ladies are so strong, they amaze me.
PARSNIP - So glad to hear my iphone isn't the only one that likes swimming ! Fudge sounds good but sadly I don't seem keen on anything sweet at moment. What injections are you taking - it is filgrastim ? Hope the throat improves quickly.
EBHippo - 10hrs sleep ! Oh I wish. Glad you are feeling better and hope it continues for you.
Carolyn1709 - So sorry to hear about your husband. Life really is a bitch sometimes. Glad my iphone saga made you chuckle and maybe we will meet one day for Rads at Mount Vernon.
SuperSue1960 - Think we are having similar symptons / issues. I got a blinding headache within 30mins of infusion and it lasted till midday the next day but fingers crossed it's gone now. Also had 48 hours of hellish stomach cramps and bowel movements which I am now wondering were actually caused by taking Sennocot Comfort and not just the Chemo. I weighed 4lb less at 12noon today although it was all water as it's back on the scales tonight. I also keep going shivery. Hope you start feeling better soon.
CareN - So glad to hear you are feeling good and have your headstrong appointment. I also had a backache from 1st infusion but that went quickly and all my Tesco shopping was a bit in vain because I can't tolerate any of the Ginger stuff or the 21 bottles of flavoured sparkling spring water ! Anything remotely sweet makes me feel worse at the moment, so sticking to tap water and tea. Are you taking the white blood count injections ?
GabbyLamb - Thanks for feeling my pain about the iphone - and yes it was dropped in the loo BEFORE the wee - just 😉
Carmy - Brilliant Facebook Link for videos on how to tie scarfs. Glad to hear your first session has gone well so far. The red face might not be the sun - I have a red face, neck, top of arms and "bad" boob. Apparently the flushing is a side effect of chemo. Take care.
ChoccieMuffin - Loving to hear from someone a year down the line. At the moment I am wondering how I will manage this and feeling pretty defeated but you ladies give me strength.
Megsmum - Can't believe your Occupational Health - I'd like to see them cope with this and walk in your shoes for a while.
Kika-K - Welcome to the forum 😉 I am also a lone parent of a 15yr old boy and have 2 mad dogs (and 2 mad cats). I took a really heavy CHEMO BAG and barely used it but always suggest a NOTEPAD - best thing I took as got mum to write down anything they told me as lots of information to take in !
Janelle - Well done on the 2nd session - I was having my first on that day. I am also going to have a PICC line fitted - bit worried about that. What injections are you going to have to do (daily for 7 days )? I start mine tomorrow.
WINTERSOCKS - Welcome aboard and I hope the ladies advice has helped you.
BeryIS - Glad to hear you are doing well - you are on TAX ? Many of us will start that on round 4 so keen to hear how you get on.
Marie67 - We started on same day as well, sounds like you had similar period types pains on first night - glad to hear you are doing well.
To anyone else I've missed off I am sending Virtual Hugs to you all 🙂
Just a thought. If you post your meeting in the "In your area" section, with where you're meeting, you might get others who aren't on the March thread to join in.
CM, Glad it can be a two-way traffic thing! I certianly welcome your wisdom and humour!
There are loose plans afoot for a meet up for some of us at Welwyn QE11 tomorrow and firmer plans for next Monday at Lister, Stevenage, to co-incide with hospital appointments. Anyone else want to join us? Rae, I think you may be local to us too, but not sure if there is anyone else? Three of us have appointments next Monday morning and were going for a coffee after. We all going to compare wig styles, scarf tying techniques and anything else that crops up!
Good grief, you ARE a prolific bunch!
Deb, you just go right ahead and sob as loudly as you wish. You’ll be buried in tons of virtual tissues within seconds. Know what you mean about wanting to get off. And eventually you WILL, there’s just a pretty up-and-down scary ride ahead of you. So you scream as loud as you like.
Carolyn, I think my best one was FEC3 (I walked 8.5 miles along the towpath and 8.5 miles back the day after FEC 3 – totally pooped for the next couple of days but felt great that I could do it) and my worst, apart from FEC 1 where the anti-sickness meds weren’t right for me, was FEC 5.
I think it has something to do with how fast it goes in, as FEC 5 was rather rushed and the saline didn’t work as well as the others. So if you can persuade your chemo nurses to take it as gently and slowly as their schedules allow, that might help.
Hair – I waited until it decided to stop behaving itself, and then got OH to get his clippers on it. He refused to shave the whole lot off, so I went home and did it myself. If you’re going to go down to the scalp, make sure you have enough Bic razors! It was a bit of a shock for my eldest daughter the day it started to fall out, as it was the first day she’d brought her new boyfriend round to meet me (lovely chap, but extremely shy!) and I just sat there, pulling out handfuls of hair, saying “look, it’s all falling out!” Good bloke, he didn’t run too fast that she couldn’t catch up with him!
Sue, don’t worry about the sleeping. Sleep when you’re tired, and don’t sleep when you’re not. Even if you’re asleep during the day and reading a book at 3am.
Caren, brilliant news for your OH. (Anything to get out of running round after you, eh? 😉 )
Janelle, I had Omeprazole for indigestion. Another one’s Lanzoprazole. These are “protein pump inhibitors” (you’re safe to google that if you want to).
Parsnip, I’ve got a portacath and ALWAYS have heparin after treatment. But I only have to have it dealt with every 3 weeks, whereas a PICC needs weekly flushing, so best to speak to your experts, that’s the crew at the chemo unit.
Kojak, really glad you’ve got that bit over and done with. I found that I felt like I had a bit of a lump in my throat for a week or two, but that settled down after a bit.
I think there are quite a few of you in the Welwyn area. Do you think it would be an idea to arrange a meetup? A few of us did last year, maybe once a month, so if someone’s not good one month, they’ll be more up for it the next. Anyone want to suggest a date and place?
And before I finish my lastest book, I have to thank you. Reading about you all and offering my support is massive therapy for me, and very welcome at the moment particularly.
I'm on December threads and mostly managev to stay positive. I had 5th chem today, I've had FECx3, and Tax x2 so far. But I still get terrified that it has spread, I was given a 40% chance pre chemo that it has, but with chemo I have a 89% chance it now is alright. Don't be cross if you feel scared we all do, this is what the forums are for, but the majority of us will be fine,
Lovely to read your posts, you all sound so positive and it lessens my fear for my first juicing on Monday. I’ve been very tearful today, just frightened for the future, my husband was quite cross with me when he came home from work as he said I’m convincing myself it will come back and it isn’t doing me any good, I know he’s right, but sometimes I just can’t help it.
Hope everyone’s had a good day.
Love Lydia x
Wow ladies turn away and posts galore.
Glad you're all feeling good, sorry Joan and caren I can't do a spreadsheet iPad won't let you. Another apology as well I intend popping into Welwyn after Headstring need John Lewis for Benefit eye brow pencil and to spend £30 m&s vouchers burning a hole in my pocket! Honestly I'm not stalking you both!!
Wishing you all an easy night with minimal se's.
Love and huge
not much to say, just great reading the posts
- Beryl, so amazing to watch your journey through fear, to brave to done it - how many stories like this are happening on this website, year after year. You did it girlfriend and so have the others - well done.
I'm alright still have a little head cold but let's keep positive.
So glad that your firts session has gone well for you. Like you I coped fine with the cold cap, we have to give it a go and if it doesn't work, then at least we tried. Hair will come back as and when and there are plenty of other things to worry about. You have the same name as my daughter, but her proper name is Julia. Anyway, my second day has gone fine so far. Managed a little sleep this afternoon for about 1 1/2 hours. I have to take steroids at 6 pm but have sleeping tablets for bedtime, along with more anti sick tabs. Last lot of strong ones tonight and then onto just standard for a few more days. Wondering when the Tax truck is going to hit me as well.
Hope everyone is OK and getting better with little or no s/e's.
Take car and hopefully good night sleeps for all
Kt, Beryl and Megsmum, glad all of us March 13th ladies had an okay day. One session less, wahoo! (((group hug)))
Megsmum, I am not doing the cold cap. I'll cross everything for you to keep your hair!
I went out for a little walk this afternoon almost at sunset and it wasn't a good idea. It was not hot, I am not hot, I only got some sunlight and not full-on on me for about 10 minutes... and I am all unnaturally red. Pff, I wish it was winter in Scandinavia and not spring-summer in Spain. it's not gonna be easy to avoid the sun! But I shouldn't complain, nothing else other than that so far.
Had my portacath fitted yesterday, I was a bit upset when i came round as it was a bit more painful than I'd expected but after a couple of paracetamols and a sandwich I felt much better and could move my neck quite well by the time i went to bed.
Had my first dose of FEC this morning and (fingers crossed) all is well so far.
I used the cold cap and it was no problem at all, bit cold for the first few minutes but you soon adjust and then don't really notice it. Very nice nurses also heated me up a couple of those wheat bags that you put in the microwave for me to cuddle which was lovely.
So far I feel fine, i've been eating normally and had no nausea. I've taken EMEND this morning before i went in, they gave me 2 more different anti-sickness drugs through the IV before chemo drugs were started and then i took another tablet at 6pm.
I've got steroids starting tomorrow morning and plenty more anti-sickness drugs for the next 3 days so i'm really hoping i won't feel too bad (especially as i have a 16 month old daughter who won't understand that mummy doesn't feel like playing!)
KT23 & Beryl, so pleased to hear that all went smoothly for you ladies too and that you haven't experienced too much sickness or other side effects. Long may it continue!
Take care, Jules x
Evening all, glad to hear that those starting this week have managed so well. I'm due my second dose tomorrow as long as the blood count is ok, won't find out til I get there though. Have had a bit of a funny day today, confusion from the district nurse over whether I need heparin in my picc line, they usually do but the hospital say just saline. Has anyone else any info on what their trust does? I've also being going through that dread and panic on the wait for results. I had a ct scan and a bone scan last week for a trial and they told me they'd contact me before tomorrow with the results, but I hadn't heard from them today so instantly worked myself into a panic that it's bad news and they don't want to tell me over the phone. I eventually got in touch with the research nurse but still shocked me that I was so easily panicked. Haven't got both results back yet but the CT was clear, just keeping fingers crossed for bone scan now and hope that the "the report needs verifying" reason for them not having the result is not just a pacifying tactic to tell me bad news tomorrow. See still panicking, I hate that, why is it so hard? On a positive note it has kept my mind off tomorrow's dosing!
Hi Patchit I got a couple of lovely mastectomy bra,s from Debenhams on-line it was nice to find them as i am a bigger busted lady, they are nicer than my old bra,s. lol
Hello ladies, quite a nice day today here, especially this afternoon. Beryl, Carmy, KT23, Megsmum and EBHippo, glad to see your positive posts, hope things have gone well today for you.
OOOH! Supersue, Vivienne Westwood earrings! What a lovely treat! Glad to hear you are feeling better today. Like Carolyn, I too dreaded constipation, it just seemed too much to cope with on top of everything else. I also made sure I had plenty of fruit and fibre. I didn’t go for a couple of days so took senokot which fortunately did the trick.
Caren, I have also set up a spreadsheet with everyone’s dates on! It made me feel a bit sad so I am glad you have led the way and come out before me! I also type my posts in word then cut and paste! Also, (better tell you now before you think I am stalking you tomorrow!), I am going into Welwyn shopping after my headstrong tomorrow! I want to get a mastectomy bra from John Lewis, haven’t had any luck getting one thus far! I have had my prosthesis for 2 weeks and not worn it yet! M and S is also beckoning me and I might have lunch in John Lewis, although I will be on my own, so that may be a sandwich from M&S instead!
Is anyone starting tomorrow? I hope if there are that everything goes well, and to everyone else, have a good night, keep up with the water and meds. Hopefully tomorrow will be another nice sunny day, which lifts the spirits. I can’t believe that this time next week I will be preparing for my second treat! It really is a rollercoaster and has made me realise that you do have to appreciate the good days! It’s a nightmare, emotionally and mentally, but we are all strong ladies and we will get through the next few months together.
Love and hugs to all
Well thats it i,ve had the 1st one, actually it wasn,t as bad as i was expecting, i had anti sickness and steroids given iv then the cold cap was put on, the first 5-10 mins was the worst with pounding head i think i might have been panicking aswell. after 30 mins the nurse started to give me my treatment she sat talking to me and my hubby all the time, tea, coffe biscuits all on tap, then sat and read until time for cap to come off. I came home with steroids, anti emetics and an injection to boost my immune system which i will give myself tomorrow. ( not all units give this )
There was a lady next to me who was having her 5th cycle using the cap and she had a full head of hair so it works for some, fingers crossed.
Hopefully SE,s will be minimal, hope everyone else is doing ok and for those still waiting it really wasn't bad.
Had my pre chemo appt today - despite having just had a mastectomy today it is finally hitting me that I am the one who will be having the chemo. Thank you for all the positives from all of of you who have had the first one! Plan on having a last take away for a few months! It's funny but we don't often have take always or go to the theatre but as soon as I heard I couldn't or shouldn't have either I want both!
Love Georgie x
Kt23 and Carmy - gland to hear that you've got through your first sessions the same as me. I've had quite a good day and the anti sickness tablets they've given me are working. One lot of strong and the other standard. Have the injections starting tomorrow for eight days, so lets hope they don't bring on any S/E's. Did you try the cold cap and if you did how did you get on? The first few mins were the worst then all OK. Hopefully, going to venture out for a walk tomorrow morning before the nurse comes. If I think I can manange them myself when I see how she does it, then I'll probably have a go, we'll see.
Hope everyone is doing OK and getting better each day.
Hope everyone is doing good and not too many side effects. I had my first session yesterday and it actually went very smoothly and I'm not sure what I was too worried about. But then over night I was sick a few times but that's to be expected its all settleled down now finger crossed that's it.
Love and hugs to you all. Xxx
Hi can't believe there is so much reading to catch up on in a day. Slept a bit better last night, had no stomach cramps which was great. Did however have some indigestion and acid reflux, so now on Ompeprazole so hopefully this will help, still no sickness but felt a bit nauseous so been munching on ginger biscuits and drinking plenty fluids!!!!!!!!!
I guess there will always be good and bad days, so just have to let my body adapt and keep taking the meds.
You made me smile with the descriptions of your various hairloss experiences.Am having my haircut short on Fri in preparation for it to star falling out, have wig appointment at Big C centre on Fri 23rd at Norfolk and Norwich Hospital, friend coming with me for advice.
Hope all continue to do ok with treatment and SEs
Day 3 of 2nd FEC and so far so good on the indigestion front. Yesterday Gaviscon became my best friend but today nothing so far. Slept for 2 hours this morning and managed to do some housework this morning as well.
Hi ladies, I can’t believe I missed a day and have 3 pages to catch up on!! Had quite a busy day yesterday – my husband was made redundant 2 years ago, and hasn’t found any work since then, but was offered 2 month contract yesterday (hooray!!) starting today! I haven’t had to do hardly any cooking for the past 2 years, as he enjoys it, so I’ve got to learn to cook again! Just as well I’m off work. My eldest son did joke that he would find a job now I’m at home all day - desperate measures, lol
I’ve got my Headstrong confirmation too, I’ll be there at 11.15 with my lovely daughter, so I’ll look out for both of you. We’re going out for lunch and shopping afterwards, so should be a good day.
Carolyn, I was very impressed by your post! I have to confess, I obviously haven’t got enough to do, as I made a spreadsheet with everyone’s start date. I type the post in Word and copy and paste, I’ve lost them too often!
But today, the sun is shining and I want to get outside, so I’ll just say good luck to Poppy, Megsmum and Kojak starting today, and hope everyone’s se’s are minimal.
Love and hugs to you all
I found this post on a differnt thread and though it might help a few of you feeling low today. I read it through and it talks so much sense. and then falling apart afterwards is normal:
http://www.cancercounselling.org.uk/nor ... penElement
Hoping your feeling better Supersue, I dreaded the constipaton so made sure I ate loads of fruit, dates and each day have All Bran. The only se of that is terrible wind!
Hugs to all
ps if link doesnt work as I'm a bit of a techno hater (well when it doesn't work anyway) then its on the thread entitled Reconstruction.
Super Sue, show us which earrings you bought! 🙂
And also in an attempt to distract ourselves, lemme share the experience of this blogger. She faced her chemo sessions with such a positive spirit, creating a theme for each of them. She is done and fine now.
I love the idea of being able to ring a bell in hospital when you are done with all your sessions. Do you they have this in any of yours?
Sue constipation can be very very painful so give DN a ring but i have been advised to take senna every day x
Well today i feel much better, don't know what the hell that pain i had was in my right side of abdomen but god hope i don't get it again i thought i'd been stabbed it was that bad. but its settled down now, still need the loo, not been for 4 days but then i not been eating much, going to phone district nurse as scared of taking to many senicot incase it was that that set off my pain.
Yesterday i slept for england and spent most of the night watching the ceiling, get up and down eventually slept, 4am - 7.30am but had vivid dreams making me wake up as if i was active in them and aching.
Post man just been my Vivianne Westwood earrings have arrived thought i'd treat myself and create a new me!
I terrrible at replying to posts, but read them all and hope you ladies are doing well today and good luck for those on there juicing.
Hopefully off to see granddaughter today was her 3rd birthday yesterday and couldn't make it.
have a good day all xxxx
I'm sorry to hear some of you have not been doing too great. I'm sending you a massive wave of hugs. Think about it as the storm before the calm as we say in Spain. Soon, maybe even later today, you'll be feeling your lovely selves again. (((()))))
I started yesterday and it wasn't as bad as I thought it would be. I am drinking a LOT of water and sort-of-waiting for the SE's to kick. I only had slight swings of feeling cold-hot-cold-hot last night. I was told hair would be gone by second session, so OH is shaving it next week...
Lots and lots and lots of love,