Morning all
It my little boys third birthday on thurs this week- 2 days after fec so we have fibbed at bit and told him it is actually. His bday tomorrow. He is non the wiser and he will have a great time. Both kids needed a little time to adjust to my no hair. But like feeling it.
Have a nice day. Debx
Carol, your garden party sounds perfect. Good on you for wanting still to go in the midst of all of this. Really hope you find a dress.
Deb, for various reasons we always lie about the actual day of our DS’s birthday. He was six a few weeks ago and still hasn’t clocked it! Hope you have a lovely party for him. Keep busy and next chemo will fly past. I know you’re dreading it, but at least it’ll be another one done.
Jo, welcome back. Was wondering where you were. Honestly, you’re not alone as I think we’ve all hit lows after first treatment. Hard not to really, as it still feels like we’ve all got a long way to go. Hope you’re feeling better today. Moan away though if not. This is definitely a good place to do so.
Bennyboo you too. Poor you with the sickness. I have that too. Might (or might not!) help to know, that somehow I found the second FEC easier. Not because my new medication worked (I was v.unlucky and had a reaction to the new drug they gave me), but more because I knew it was only going to last for the first week. Somehow that made it easier to stomach as I knew there was an end in sight.
Sandra, great to hear you sounding more like your normal cheery self. Though those women at sports day sound annoying. I still haven’t told the school mums what’s going on with me. The teachers know, but as I still have a bit of hair, I can get away with scarves, etc so I decided not to tell the parents for now. Most of the other parents are lovely, but there’s one mum in particular who I know will be all over me. All well intentioned, but am dreading her finding out.
Wishing you all a sunny weekend then. Hope SE keep away for all of you in fugland xxj
Hi Julie
You sound better. I am having 3 fec and 3 tax too. Just got Back from tesco. I went with no hair just a hat. No odd looks but the check out lady kept calling me flower. Maybe I am just paranoid. OH is taking the kids to the soft play this afternoon so I think I will have a nap. Zzzzzzzzz. Take care dx
Hi Guys,
Feeling much brighter today, thanks for giving me a boost yesterday. Had the boys home today which always makes me feel better. We had a great time and you can’t be grumpy with two happy little men running around and laughing at the hair falling out.
Carol - In all seriousness I think the garden party sounds lovely what a lovely way to celebrate. I hope you found a dress and that shopping in this heat wasn’t too awful. Can’t wait to see the piccies.
Deb - Don’t blame you at all for moving the birthday. I couldn’t bear the idea of missing my little ones birthday, it was the first time he had been excited about his birthday. He had a great day and I loved being able to enjoy it rather than just survive it. My two are doing ok with me shedding not sure how they’ll do when I cut it off but I’m trying to get the hair to last until Thursday as I won’t need to do the school run again after that. But have to say can’t wait to cut it off as it’s really sore now.
Hi Julie - Thanks for letting me know I’m not alone with the blues. It’s great to know you found the 2nd FEC easier but having an allergic reaction to the meds that are meant to be helping you sounds horrid. Have to say I’m dreading the Tax too. Somehow though I think it’s easier to only have to do each type three times as it doesn’t seem that bad at least that’s what I’m telling myself! I’ve told a few of the school mum’s but not many. I’m hoping to drag the hair out until next Thursday as I’ve got my next chemo then and won’t need to do the school run again until after the summer holidays. Hopefully by then I’ll be used to the baldness and won’t worry too much about any stupid comments that come. I too have a contingent of parents I wouldn’t tell if I was on fire. I know it’s daft but I don’t worry too much about the comments I might get but I really worry about the parents saying something stupid in front of their children and them then repeating it to my boys.
Midge - Hope you got some sleep and are feeling well. I wouldn’t worry about the checkout lady, I work with someone who calls everyone flower all the time. I bet she didn’t even notice.
All the best everyone,
Love Joxx
Hi pals
Haven’t posted for what seems like forever - going through a MAJOR couldn’t-be-arsed phase - found my 2nd FEC harder than first (surprise surprise!) much more tired and… well…couldn’t be ased really.
Due for bloods tomorrow ahead of 3rd FEC on Wednesday, so I hope this lack of motivation for anything is not a sign of low neutrophils…we shall see.
Reading back through all the missed posts, on the question of work, I haven’t been to work since my dx (I work for the NHS and treat patients in the community, many with cancer). I felt I didn’t have the mental or physical strength to do work AND be able to concentrate on getting myself through the chemo - I have kept in touch with work who have been fab and very supportive, and actively tried not to feel guilty about not working when I feel well. Instead I am putting the time into positive things to boost ME - badminton, Pilates, walks in the woods, lunch with friends etc, or just sitting with the cat on my lap in the garden.
The best bit of advice I was given right at the beginning was: be kind to yourself…I have to keep reminding myself every day.
Must kick myself up the virtual backside and get out of the couldn’e be arsed mood before Wednesday…all help gratefully received!!!
Love to all
Grumpy Sal
Hi everyone
Good to see you posting sal. Hope your can’ t be arsed phase is lifting.
Had my little boys party yesterday. He was v excited and loved it. He ended out with a temp though. Just my luck he will get poorly just in time for my chemo tomorrow.
Feeling quite tense today. Got app for bloods and to see onc. I have a list of questions and some of them I really don’t know if I want to hear the answers. Feeling quite negative . Maybe it’s just stress but feel a bit overwhelmed by sad stories. Debx
Morning Ladies,
Well l think l am truly back to my ‘normal’ self today, l washed the bathroom and toilet floor before 8.30am usually l am sitting around with a green tea, fiddling on the laptop. But today l have found some energy, not sure how long it will last!
Julie, you and me for the 3rd FEC, mine is the 23rd, gone so quick, thankfully! Oh l do have an ulcer on my tongue, but not too bad.
Been using something the chemist gave me, not much good, but hopefully it will go as quick as it came.
Jo, l know what you mean about not telling some parents, just in case it gets back to the children, my friend had bc 16years ago, her daughter was 8 and she had a dreadful time when the parents and children found out! the school were no help, they ended up taking her out of school for 3 years, but that was 16 years ago, things have changed!! but you still get some very strange comments from people, not sure if they don’t think or don’t care what they say! hopefully it is they don’t think!!
Sal, Hope the bloods go well today, be good to get FEC number 3 out of the way!
You obviously have a stressful job at the best of times! So as you say, time for yourself first.
Deb, sounds like you all had a fun day yesterday, love childrens birthday parties! the excitement the jelly, the cake!
Hope his temp. is back to normal today, hopefully it was the excitement, children go up and down so easily.
Hope the bloods and onc appointmen go well! l think we are all so emotional any story upsets us! positive thoughts
Sandra xxx
Well I’m back! Turns out I was caught in a admin muddle as people forgot I was having a portacath fitted when they told me to get my bloods done two days before, I should have just gone in the day before for bloods, pre-clerking and to sign the consent form! But no one told me. Anyway, all sorted. Bloods on the Wednesday not good enough (white blood cell count) but were OK on Thursday (much better phlebotomist, too, only took 2 attempts), so had portacath fitted and then second FEC on Friday, was there 9 hours in total as portacath had to be done before 9am as they needed the portable xray scanner in theatre then as the other one had broken!
Periods came on time as well, have been heavy and painful for the last three days, not nice! Lower steroid dose this time, but still feeling bleeerch, more nausea and diarhea this time so just taking it easy. Acupuncture tomorrow which I’m very much looking forward to as long as I can get there!
And went to the hairdressers Saturday as there wasn’t much left, so she washed it and we decided to go for a full shaving - I have to say I think it really suits me, but I still wear a hat over it. Wig appointment is this Friday, so that will be fun!
x
Hello Sandra and everyone
I suddenly felt ‘normal’ yesterday too, after FEC 1 plus 12 days, thought I was OK before , but proved wrong. So good to feel free and with energy again.
Now trying to squeeze lots in before the 20th, FEC 2 day. Should it be cleaning the house etc or things to indulge in ? - both me thinks, it was even worse feeling ill and seeing the dust , with no energy to wave a duster !
Sandra - have you tried fresh pineapple, it was a miraculous cure, overnight, for my mouth and throat ulcers a week ago. That advice was on hospital leaflet for chemo patients , it said fresh pineapple has enzymes in it that aid healing of ulcers.
have also just discovered Twinings ginger and lemon tea, love it. hope it will help during nausea times.
NEW INFO SHEETS ON “HEALTHY EATING AND SUPPLEMENT GUIDELINES” have just been published by the Bristol Cancer Care Centre - now called the Penny Brohn Cancer Centre, just outside Bristol. much supported by Prince Charles, their website is excellent. The new sheets in nutrition are good - esp the one with recipes on . Do have a look, they do courses / sessions on all sorts of cancer care, most are free - donations welcome.
pennybrohncancercare.org/viewnews.asp?NewsID=63&PageID=6
Im booked in on this Friday , all about food and how it can boost mood. Will report back on it.
Hope everyone feels well this week. Best Wishes Kirsty
Hello to All -
Welcome back to Grumpy Sal! though actually it sounds like you’re doing pretty well - playing badminton?! Am seriously impressed. it’s as much as I could do today to run 10 yards for a bus.
Hi Jo - those of us on FEC then Tax will have to all support one another through it. I have heard of a fair few women who don’t find it worse, so let’s hope we’re all in that camp. + I’ll keep my fingers crossed for your hair holding on until the end of term. I do so know what you mean about the school mums.
Sandra, cleaning toilets at 8.30am, are you sure that’s a sign you’re well?! Glad to hear you feel evem better today. You’re catching me up though. I’ve just had FEC3 delayed by a week (to 22nd July) as my bloods are worryingly low. Neuts are only 0.2, so they nearly kept me in. Onc says they’ll decrease the drugs by 20% next time, as they’re too much for me. Still, suppose at least it shows they are actually working! Quite depressed to have slipped a week, but at least I’m not stuck in hospital as well.
Deb, glad the party went well. Really hope your bloods are okay today and you can go ahead this week. I think anticipation’s the worst part, so maybe that’s why you’re feeling so low? Hope it is and you can get through it. Feels good once you’ve got to the other side, even if you do have SE.
Waving to Mrs Sloth’s new Portacath!! Does it feel odd, or can you forget it’s there most of the time?. Am amazed you went to the hairdressers the day after chemo. That’s brilliant that you felt well enough. And good on you for feeling so okay with the shaved head. Wig fitting’s quite fun I thought - take a friend, as that helps too. Mine laughed like a drain most of the time and tried on more wigs than me, but she was really helpful too!
Kirsty, really glad you’re feeling better too. Thanks for info on eating, I will read later. Have been eating absurdly healthily and still haven’t managed to keep my bloods up - my iron levels are strong though, so at least something’s going right!
Hi everyone
Back from hosp. Had to hang around for a while because they said they wanted to find out there and then if chemo needed to be cancelled tomorrow. I wasn’t expecting that. I thought if the injections had raised the count then that was it. But seemingly they can dip quite significantly. So had to hang around for a bit replanning the next few weeks mentally. However they results were fine. They had dipped from 4.8 to 3.2 but they were in the range. I actually found myself saying good when she told me all was ok. Anyhow they are going to give me the 1 big jab this time. She said she would rather do that than reduce the dose. I also got to ask her all my niggling questions about being her2+++. which was good.
Good to read everybodies news. Debx
Hi guys,
Been to work today and so haven’t caught up with everyones posts but just needed to blurt!!
I’ve been back at work for week three and work has been hard but fine.
But…
A lady that works for me told me on Thursday that she had been for a routine mammogram and had been called back. She went to the clinic today for her results and they have come back as grade 3 IDC. I tried really hard to bite my lip and just listen to her but it really brought it back (mine is the same). The rising sense of panic, I don’t need to go on you all understand. I felt awful I kept trying to stress to her that she didn’t need to come back to work and that she just needs to look after herself but I felt really guilty for having gone back to work. I really don’t want her to think that I expect her to do that just because I did. Also I’ve been wandering around at work all week with my hair gradually falling out and now completely gone (I’ve shaved it off and have funny bald patches all over) I haven’t worn a scarf or anything as i’ve just been too hot and itchy, all I keep thinking now is how freaked out I would have been to have been watching someone who’s having chemo knowing that I’ve got to do it next! All I keep thinking is about how I felt at the beginning and wishing I could make it better for her.
I know it sounds awful that I’m worried about how someone else having cancer makes me feel but I didn’t know who else to tell how i was feeling.
What a day! Thanks for listening to me blurt guys.
Going to bed now, had enough of today.
Love Joxx
Hi all,
Boy I do love acupuncture, almost human today!
Julie, my portacath would wave back if it had arms, I’m sure! I can’t feel anything except the dressings, as the sticky bits are itchy but I can’t take them off for a week so they have to stay put. My acupuncturist gave me a big hug yesterday afternoon and I panicked but nothing bad happened!
Jo, you mustn’t upset yourself about your work colleague, all of us have an individual journey with this and we find our own way through it. I am sure she will welcome any practical advice from you once she’s over the shock, and you are being a good boss in giving her the space to get well. The fact you are being open about your hair loss may help her too, I know I was showing my bald head off to everyone when I popped in to work yesterday on my way to acupuncture! This may sound a bit harsh, and I don’t mean it to, but you have your own battle at the moment, you can’t fight hers as well, you need all your energy.
x
Mrs S is wise Jo. All you can do is be kind to your work colleague and offer to talk if she wants to. Actually, she might have found it encouraging to see you at work. I know when I was diagnosed, I hadn’t a clue what to expect, and imagined I might be bed ridden the whole time. Was great to find out that wasn’t the case.
Mrs S does acupuncture work for you then?? In what way? I’ve had it in the past for back problems and was thinking I might go back. Could certainly do with a lift.
Deb, am so pleased your bloods were good. Hope chemo goes okay today and am wishing you no icky SE’s.
Hello to all others. Hope everyone’s only well. xj
Hi everyone
Jo am so sorry that bc is even invading work. It must be so hard- the one escape and now you have to face it there too. I hope something positive can come out of it- either a friendship or some support. Even if you have to say that you go to work to not think about it.
Had fec2 yesterday- not nice. Reacted a bit to c again. Don’t like the sensation I get in my head and face. Had a bit of a panic attack. They gave me emend for sickness but felt a lot more sick. My bcn said to try not to be sick if poss as it can be hard to stop once you start. Is this true it too me every ounce of will power not to. Also got the cold sweats last night. Hope it is not the emend. Will see today.
Dx
Deb, poor you. Hope it’s not the Emend, though that was the one that floored me. Made me v. sick (ironic seeing as I was given it to stop me being sick!), also lots of other SE. I spent three days in bed and could barely move. Apparently I was unlucky, as it’s rare to have such a bad reaction to it (only 1:1000 do). My Onc did tell me that it’s very, very strong though. Hope you’re feeling okay today xj
Hi Guys.
Thank you all for your good advice as always. Have second FEC tomorrow so here’s to minimal SE’s for us all.
Hi Deb I was told the same - to try not to be sick. I hope you feel better tomorrow. I tried really hard but couldn’t stop myslef being sick after 1st FEC and it did just get worse. My oncologist was adamant when I saw her before chemo that there was no need to suffer being sick and to ring Dr’s as soon as it starts so that they can stop it. So felt really comfortable to ring out of hours doctor who came and gave me an injection to stop sickness, they said that once sickness starts it’s really hard to stop it any other way. They were really brillaint and the injection made me feel better within minutes and the sickness never came back. They’ve changed my drugs this time and have given me about 4 different ones to take at various times. I’m convinced I’ll get them all in the wrong order!
Mrs S - Doesn’t sound harsh at all, good advice. Thank you.
Glad the acupuncture was good what does it do? Sorry if I’m being dense but I’ve never had it. Is it for the nausea?
Again another silly question - Is a portacath a PICC line? I’ve been wondering whether to have one as Onc suggested it to save veins. Am really worried about playing with the boys and whether it would make it awkward or not.
Julie - Good advice I know what you mean about the idea of chemo. Thank you for advice. Just wondered what anti-sickness drugs you take now that can’t take Emend. Hope you don’t mind me asking.
Just caught up with the posts from the other day and re school mum’s - hair hasn’t held out and I have been pleasntly surprised - a couple have come up to me and made me laugh by saying things like - oh it’s you with the cancer, we knew it was someone but didn’t know who. But most have been great and just haven’t acted any differently. The kids don’t seem to have even noticed.
Run out of steam now and off to bed to try and get a good night sleep befoer chemo tomorrow. Here’s to minimal SE’s for us all.
All the best Love Joxx
Just a quick post
Good luck with chemo today Jo. Hope your new sickness tablets work. I don’t actually think emend has really worked for me. Feel exactly the same as fec 1. Well if it is going to be like last time then today and tomorrow will be the worst days so batten down the hatches and I’ll see you when the storm breaks. Debx
Morning Ladies
Just to wish Jo Good Luck to today, another one under the belt!
Sorry to hear about the lady who works for you, l think everytime we hear about someone ‘new’ to bc, it bring back that stomach churning feeling, makes you feel sick, other than the reminder of your own bc, the knowing what she will have to go through, not sure it will ever get easy.
We all try and cope with this in our own way, whether it is to cary on working or take time off.
But you are the main person in all this, so whatever gets you through is what you must do. I think if l were working for you, l would find it easier for me knowing someone had or are going through the treatment, l know when l was diagnosed l needed to talk to a friend that had gone through bc, rather than a closer friend that knew nothing about how l was feeling, because she didn’t have bc!!
As l say the main person is you, and as long as she doesn’t put too much pressure on you! xxx
Deb,Did you ask why you get that sensation in your head and face? not surprised you had a bit of a panic attack.
Hope you feel better very soon! Easy to say ‘try not to be sick’
Be pleased when this horrible mouth taste goes, if ever!
Hello to everyone, hope you are all coping at whatever stage you are at.
Sandra xxx
Hi Sandra
The nurse said it was the c part of fec. They give that in the middle and it can cause a prickly headache. I got it the first time too but this time it was worse. Don’t know if she pushed it through quicker. But it Was not v pleasant. Feel poisoned today. Dx