'June Jewels' - Precious and shining through :)

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2701

Hi all
Been in Scotland for 12 days with no WIFI! Just wanted to let you know that I had first Tax yesterday and so far no SEs at all. Slight scared as on previous cycles I’ve been out of action for at least 5 days with woozy head and fatigue.
Had to have steriods IV’d before Tax as I couldn’t find the tablets they’d given me to take the day before (doh!) so it all took rather a long time. No nausea so far and I haven’t been given any antisickness tablets at all. Can this really last?
Does anyone have a response to the “You look really well” comment. Does anyone else find it hard to deal with or am I just being oversensitive? It is I suppose better than 'Oh I’m so sorry. What’s the prognosis?" which I got from someone on holiday! Myabe I’m just a grumpy old bat and should just be ignored!
Right now going back to slowly catching up on all your news…

Nicola

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Nicola - I usually reply to the looking well comment with ‘It’s amazing what drugs and make up can do’ - that usually shuts people up!!
Starting to feel a bit spaced out after yesterday but enjoyed the LGFB session - met a couple of really nice ladies local to me.
V tired so lights out for me. Good luck for tomorrow to the jewels at the bar - and hope everyone is doing ok.
Fiona - hope you continue to feel non-nauseous.
Night night dear friends. XXX

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Cheryl - it’s my god daughter - she’s a dolly pop.

Reassuring to see a few people coming back from first Tax relatively SE free x

Parents here so will catch up soon x

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Ha ha, I also feel cross sometimes when people say how well I look. It does depend on their tone & how vulnerable I’m feeling. I know most people mean well but it does sometimes feel like they mean, phew, you don’t look near-death.
I usually say it ain’t so pretty under the long sleeves and the wig/scarf. or that they should see me on a bad day. :slight_smile:

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Pleased to confirm another one here with not much effect from Tax yet - although my onc said SEs could kick in hard after 3-4 days. Been out for a cycle with eldest son and to the park with a friend and her kids to try to make the most of ut. Fiona and Nicola - glad you are both ok. I was given Domperidine to take home for nausea but I haven’t taken any. Feeling very red in the face morning and evening from the steroids but it clears during the day - just as well, coz when I get up in the morning I’m just like your monkey pic, Sandra! No loss of sleep from steroids yet - I took my last dose at 1pm today.

Nicola, Gus, Cress - I am longing for someone to tell me I look well! Nobody does so I must look a sight! Sometimes I think nothing anybody could say would be right for me, I’m so touchy.

Gus, I hope your treatment goes ahead tomorrow. Good luck to Janet and Katherine too (hope I got that right, can’t go back a page on my phone).

Deedee, sorry you’ve been feeling down. You must really muss the children you look after. When all this is done and over think of getting back to it again. Congratulations on your anniversary (you too, Jackie) and enjoy going out with your husband.

Off to bed for me, hoping the sleep fairies visit. Good night all xx

2706

FEC-T, 3 of each. Tax cycle 1, Day 1 6 hours on.

Vicki - I’m really not super-Mum. On all 3 FECs had almost 2 weeks of feeling rubbish, so just tried to make the most of my “good” week 3. No real SEs so far with Tax, although only 6 hours after finished. Usually after FEC, I was totally out of it and really nauseous after 2 hours, so so far…
We will indeed have an interesting assortment of hairdos when we meet, can’t wait.
You are coping so well, I really admire you. If you need to seek counselling, I have had some in the past for another issue and I would really recommend it.

Sandra - OK so far, I am touching EVERY wooden surface whichc is difficult when you have fingers and toes crossed.
How are you today? Glad you saw BC buddy (is that the policewoman?) and she perked you up.

Chelle - thanks for noting my date, also chemo 5 will be 29th August. Your Mum and Dad sound great, hope they spoil you for a few days with lots of TLC. Any progress yet on planning the trip to Ireland next year?

Debs - hope you feel better tomorrow.

Jackie - I’ve not yet answered door bare-headed, but almost. I did laugh at your story of the log man.
Happy Anniversary to you and your wonderful hubby! Hope you managed to have your family meal out to celebrate.
How generous are you? £5 an hour for chores, don’t let my lot know, they will sell me on Ebay and defect to you.

Marion - we could enter the British Bake-Off together. I would love to meet Mary Berry, her recipes always work.
I woke up yesterday with a mere 8 bites on my leg. Nowhere near as bad as you. Germoline and they’re fading, not too itchy. Poor you, you’re covered, hope the cream or mouthwash working for you.
Wig looks great, can we have a front shot too please? Bet you look fab.

Deedee - lovely to hear from you, sorry you feeling bit low. You must miss foster baby, how tough for you.
Happy Anniversary to you and the lovely John for tomorrow and enjoy your trip away.

Gus - hope everything works out and you get to see Patti Smith.

Nicola - where have you been in Scotland?
Mmm, the “You look well” comment. No-one outside OH, son and daughter really see me when I’m feeling, and looking, c**p. So I guess I protect others from that. When they see me, Raquel is on plus a bit of slap. Even then, I do find it irritating, but guess people just don’t know what to say sometimes?

Night-night precious ones. I’m not expecting sleep fairies tonight, but at least I don’t have nausea, thank goodness.

Fiona

xx

2707

hi everyone,
of to bar today, feel like i have already had the poison, had a sore come up on my lip, never had a cold sore before was not sure what it was, distruct nurse who came to change dressing for picc line said i should see gp. also slightly inflammed around picc line, so off i went, gp not sure about sore, so siad would treat as cold sore and gave me some ceam, also gave me antibiotics for inflamation, they have made me feel awful, have had to visit bathroom quite alot, lucky have a downstairs lou, also very worried about today, gp, said they might delay treatment, it seems if it can go wrong it will. not very positive today annoying when people say oh everything will be alright, i know trying to help but it sounds so contrite i could scream. and like some of the others were saying being told you look so well really doesnt help, so will try some of the comments offered, even gp said it,
however, good lick to all ging today, and hope all goes well for you.
Katherine x x x

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sorry should say good luck to all going today

2709

Oh Katherine, poor you. I really hope things look up for you very soon and that the meds kick in to make you feel better. I can’t think of anything to say that will make you feel better, except that I understand how down you must be feeling and I’m sending you a virtual hug to let you know that I’m thinking of you.
This crappy time WILL pass…

Cress x

2710

Morning Jewels well first day back yesterday went great so good back to normality think after 3 wks off I had gone a little bit psyco totally knackered but so good not in today till 12.30-10.00 another long shift but so good to have a purpose for the day,only one elderly gent commeted yesterday asking me “so whats with the hat thingy” explained briefly and he was so apolgetic but his parting words were STAY POSITIVE ARGHH really have serious hangups over that word need to find a replacement word for it.
Going to hit frezzer shop this morning and stock up just incase next weeks crap then need to go for stock so fully occupied today did asda run about 9ish last night find its quiter forgot YS had gone out so had to carry it from car and unpack myself but at least I know where everything is lol he has asked me to get things he can cook so i said what like his answer was ready meals so think I might spend bit of time cooking and freezing stuff this weekend or if I go down next week I am doomed.
Regards hick line got my appt though post with a booklet explaining it actually sat and read it (unusal for me) and more scared now than before anyone got one that can be honest with me about it please dont use the word POSITIVE lol it just seems to need so much care,also now having to wash in hibiscrub and put gel up my nose because of infection risk so not only look ill now smell ill that stuff stinks
Anyway going to start my day good luck to all today take care
Jill xx

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Jill
I’ve got a groshong line which I believe to be quite similar to a hickman.
I had it inserted in the procedure room on my day unit - it took about 30-40 minutes. It was not painful but it was uncomfortable because the sedative didn’t work.
I had some discomfort on the entry site in my neck for a few days and had to keep that and the exit site clean and dry for several days.
My stitches came out after 3 weeks and now I am completely unaware it is there - and it has no covering. I can shower etc as normal but just need to keep it very clean. I have not been told to put anything up my nose! Thank goodness as all my nose is doing is running!
I have found it to be a huge relief not to have to have nurses digging around for invisible veins but it is a bit of a bore going in to have it flushed every week. The tube that hangs out of the chest looks a little unsightly but is usually covered by what I’m wearing (!) and I find that if I wear even a simple necklace, the entry sight is also much less visible.
Please ask if there’s anything else I haven’t covered. XXX

2712

Morning Ladies,

Cress glad you enjoyed LGFB, looking forward to mine in Sept (fingers crossed am up to it!). Nice you got to meet some local ladies too.
Good comeback line for the “you look good” comments, Ive not had too many of them. Best comment Ive had was last week when called into work with scarf on & one of colleagues said " have you lost your hair then?"…er no I just walk round with this on for attention!!..anyway I lifted up scarf & said “yes hair has gone!” that did the trick! :slight_smile: am sure people just don’t know what to say & don’t mean any harm but this bloody BC crap makes us all a bit sensitive I think!

Joan great no s/e’s for you as yet long may that continue!..good for you out cycling etc too, feeling a bit lazy again here!..xx

Fiona, no nausea yay!!..what a relief for you!!..so debilitating when you feel like that! Hope you managed to get some sleep?
Yes was ex-police lady who came, long story short she took early retirement from Met police then re-trained in Holistic Therapy, just got set up etc then BC struck so she’s not been able to carry it on as too physical doing massage etc…such a shame, she’s a lovely lady & been a great support to me (& me to her hopefully!)…xx

Katherine, hope all goes well today, so sorry you’re feeling so c**p today of all days. Will most likely be the antibiotics making you go to loo, I was same on first cycle…not nice :frowning:

Jill well done to you on getting back to work, long hours you’re putting in there & then shopping/cooking too!..makes me feel tired just reading your post…agree think the P word should be banned!! :wink:

Been invited for cuppa to another colleagues house ( Ive only worked in the job for 3 months so nice to be remembered really!) am excited because she has a new puppy who sounds adorable!!..Catch you later Jewels…xx

2713

Jill I sent you a pm I too am having th nose gel and the lovely pink shower gel. Having my portacath fitted on tues. What day you there for your line??? Hopefully we can meet up at Chrsities or somewhere local to have a brew and a rant!!!

Sorry ladies Im a July/ august girl

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Chelle your god daughter is gorgeous

2715

Morning all (whoops, just pm, what have I been doing all morning?)

FEC-T Tax cycle 1, Day 2

Joan - crossed posts last night. Glad you still ok, I’m a day behind you on our first Tax. Spookily, I feel good today, on FEC I would have been in bed feeling awful. Like you, doc said I could wake up tomorrow, Day 3, with the Myalgia aches and pains!

Katherine - hope you get on ok today, sorry about all the niggles, too bad. Big hug x

Jill - you are so busy, take care lovely. Yes, the “positive” word also wearing me down, but can’t think of a replacement. Looked up the Thesaurus online but nothing seemed suitable.

Sandra - surprisingly got 4-5 hours’ sleep last night, despite big increase in steroid dosage. Took all anti-sickness given, just in case, but still no nausea (whisper, in case it hears me).

Sun just come out, so lunch in the garden I think. Son and daughter so pleased to see me up and about, after the bed-ridden wreck on the 3 FEC cycles. Warned them it may not last!

Fiona
xx

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My Tax truck has hit sadly, can’t get up! Can’t think - brain gone fuzzy - mouth like the proverbial bird cage and just feel a bit pants!
Fiona, so pleased you’re still feeling good - take it easy though!
Sandra - some people do state the bleedin’ obvious dont they - ‘has your hair gone’ I mean - honestly!
I’m sure we’ve talked about the hot flushes before - but I was like a Belisha Beacon last night! Temperature normal (or a bit low) but sweaty betty! First time - no likey!
Where’s my Breast Cancer Sucks T-shirt when I need it!!!
Have a lovely day Jewels - Good luck bar babes. xxxx

2717

Hi all, day 5 after first TAX and I ache all over. Haven’t taken anything for it yet (got some co-codamol) - does anyone know how long the aches and pains could go on for? Just had last day at work for two and a half weeks now, just as well as don’t think I could go on any more! Will try the co-codamol soon but was hanging on as hubby has had these and found side effects quite strong strangely I feel relieved to be finally getting some side effects apart from the hair loss as hopefully it means its working!! Hope everyone else doing okay today x

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Hi Izzy
First Tax for me started day 5 and lasted about a week. I was advised to start pain relief and to keep it going regardless to get a certain level up in the body. You could try with just paracetamol (take temperature first!!) and then use co-codamol if it doesn’t help.
Are you having the single shot injection or the 7 x daily ones? - they can cause the pain in your bones and joints. I’ve just been switched (Tax x 3) to the single one and although I feel rough, nothing compared to x1 and x2. If you’re having the 7 daily ones, and you’re in a lot of pain, it’s worth telling your onc before round 2. I also had my dose slightly reduced…
Good luck Izzy, I hope it passes really soon - Take care - Cress xxx

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Thanks for the info about TAX Cress, if the pain goes on that long I’ll have to start something now. Like you say, maybe paracetamol first. When you ask about my injections, do you mean my stomach injections? I normally get a five day supply of GCSF which I start on day 5 to boost my immune system, but because I’m going on holiday they’ve given me a 7 day course. My onc told me right at the start of treatment to do the injections last thing at night so I wouldn’t notice any bone pain. Yes I have noticed very mild aches from it, but this aching I’ve had today is much much stronger and I haven’t even started the GCSF yet, that starts tonight! It’s really helpful to know how long this could last though X

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Cress - sorry just noticed your earlier post and realised you’re struggling today too. I totally agree about the fuzzy brain and yucky mouth! I’m just sitting here spaced out now keeping my fingers crossed the work I did today was okay as I really wasn’t with it. I’m lucky to work as a secretary at the hospital I’m being treated at and they’ve been great, but this break has come at just the right time!! Hope you’ve felt a bit better as the day’s gone on xx