'June Jewels' - Precious and shining through :)

[Melrose15]

Fiona you must have had the same nurse as me as she went on and on about severe joint pain and fatique on T and I didn't even ask!!

[Marionblue]

Fiona - For the 1st and 2nd cycle I only had bone ache for 1 day each time. 3rd cycle however I've had what I can only describe as toothache in my legs, a sort of grinding pain. I don't think this is the Taxitere though, I'm sure its the Nimvestin stomach injections which I have for 7 days. I suppose it could be a combo of the 2. I also had vile taste in my mouth but no thrush. Also acid reflux which goes without saying.

Vicki - I so agree that how you look is not a guide to how you feel. When I have wiggy on I look like I haven't a care in the world.

Went to town with OH today to get some bean sticks. I know, how the other half live eh? The excitement of it all. He decided he wanted some new shorts so have been up and down the high street and I now need a long sit down.
I fancy an ice lolly.

Catch you later.

Marion
XXX

[Glasgow_Girl]

Cress - thanks for sharing your experiences of the T! As I said, it's good to hear the real deal from those who have been there, done that and got the t-shirt.
I've been unlucky with the nausea on FEC, lots of the Jewels have not had nausea or only a little. I did also have the awful mouth taste both cycles, but thankfully no thrush so far!
We are all different (and all special).
Off to meet OH for trip to M&S - sofa bed we fancy got £300 off in the sale! Hope it will be as nice in the flesh as in the online pictures!

Fiona
xx

[Suffolklady]

Fiona, after one session of Docetaxel I had; loss of appetite for about 10 days, horrid taste in mouth which developed into thrush (also in 'other' places!) from about day 4 to day 11 it was like being a bit drunk, a really bad hangover, and flu all rolled into One, including 2 days of not being able to get out oF bed. Monster headache for 6 days. That said, I still watched the tennis and most days I did a little shuffle into town and back. I had no sickness at all. As we all know, we will all experience different things but as always, perhaps prepare for the worst and hope for the best!
hope this helps and doesn't send you into a spiral of panic! I'm dreading the FEC as I'm a real wimp when it comes to being sick! X

[Glasgow_Girl]

Hi everyone

Jill - the sleep deprivation is awful, I agree. I tried an eye mask for a couple of nights which did help a little bit. Hope you get away on the seaside trip, sounds like a good plan and the sea air might help with sleeping.

Deedee - re the food, just eat what you fancy and forget about the calories, we can sort that out later when we're better. I got weighed today at clinic and think I've popped on a couple of pounds. Fortunately, at the moment, all my "naughties" are the lovely summer fruits - strawberries, cherries, blueberries etc. Only downside there is the acid in fruit, which may not be helping the nausea, but the upside is no bathroom problems - you can't win really!!
Asked doctor at clinic today about Doxataxel and Taxitere (T) and they are the same thing. She also volunteered (didn't really want to know yet) that should be no nausea with the Doxataxel, BUT lots of aching bones and joints, which floor you for the first week, then weeks 2 and 3 should be ok. Can anyone who's had the "T" confirm that please? Trust the Jewels' opinions better than the doctor sometimes.

Marion - sorry about the cough, hopefully you'll be in the 15% where the suppressant works. At least it's not a infection.

Jackie ( and Deedee) - re anti-sickness meds. Been to clinic this morning before my 3rd FEC on Thursday. Got Emend, Ondansetron, Dexamethasone and Cyclezine, all of which I had for cycle 2 and had 12 days of nausea. However, doc has increased dose of Ondansetron for after chemo and told me to start taking Cyclezine tomorrow (along with the Omeprazole which is to prevent acid reflux and DID work for cycle 2) and on Thursday morning before chemo. Not holding out much hope that it will help, but if the nausea is less than cycle 2, which was a bit less than cycle 1, then I'll take it.

Vicki - hope you're not overdoing it at work and they're not taking advantage of you.

Clinic this morning. Slight change to meds for anti-sickness, see above. Also asked about the niggle in my good, chemo arm. Feels like bruising inside and a pulled piece of elastic from elbow to wrist, area where I had my FIRST chemo, not the second. As suggested by my BCN and the onc nurse, doc said it was vein irritation, caused by the chemo drugs. Quite common apparently, she will refer me to physio. No redness or swelling, so that's ok, but I am concerned going forward that veins might start playing up. She said should be ok, but they will keep an eye on it and should rotate the veins and use different one each time. I'm reassured a bit, but not completely!!
Blood test ok and done in the tender zone, but not from the crook of my elbow, where I've always had it done, but from a random point on the inside of my forearm - and it's ok, so far.
My beautiful daughter came with me to clinic today. Lovely to have her company, then we went for coffee and cake afterwards plus a bit of shopping - she made me buy 4 new tops. I think somone is going to have to remove my debit and credit cards soon....

All have a good day, sunny and hot here in Cardiff. Deedee, my Aunt lives in Glasgow (Mount Florida, near Hampden Park) and already texted me that it not so nice there today.

Fiona
xx

[artemis17]

Phew today seems even hotter than usual, the air con in the office is good but just the short walk in made me sweat, dont think its the chemo induced menopause yet 😉 !!. Think i'm looking too well as ive been given tasks to do on Friday so i hope i feel well enough after tmows chemo to go in. Theres definately a difference between looking ok and being able to function as well, and i wish that was understood. If it wasnt for financial reasons i wouldnt be working full time just now as i do find it tiring. Oh well i guess see how it goes.

Hope those at the bar do ok and arent finding it too warm. My unit was so hot yesterday when i had bloods done and the chairs are vinyl covered so extra sweaty, mind you once the cc is on tomorrow i'll be needing a fleece and woolly socks.

I cant scroll back so not much to say, but will have a proper catch up later.

Take care
xx

[Guest user]

Hi everyone,
Gus, sorry to hear your blood counts werent up to scratch- hope they are better in time. And happy birthday to your Aunt, hope she isnt shocked by the wigs if you get to see her.
Chelle what is your OH doing to annoy you? Mine is generally being well behaved at the moment though did say he was going to get me an eye patch to go with my pirate hat today. Idiot.
Izzy I have heard that it is the E in the FEC that does most of the work, and you are still getting that- so that should be reassuring. But as everyone else on here has already said they do know what they are doing and are clearly balancing your risks.
Joan- I was yet again horrified by your treatment by the district nurse. Our NHS is so good at some things and sadly let down by some individuals (I really do think it is dependent on th epeople who deal with you, not the resources or anything else).
Jayney I think we all have days when we want to run away, don't we. It's so tough. But the chemo is so important- especially if you have a node affected. But on the bright side there are lots and lots of women with affected nodes who kick cancer's butt and there is every reason to think you will be one of them.
Marion I was thinking of you this morning whilst walking my dog through some very pollen-y fields. I never get hayfever of any kind but even I am getting itchy eyes etc at the moment. I hope the cough suppressant works...
Fiona- this time I got emend (hurrah! Even the pharmacist said' woohoo you got the wonder drug!'), ondasteron, dexamethasone and something else beginning with m that I have forgotten (had it last cycle as my back up tablet and took lots of them!). So, am hopeful for less nausea this time round. fingers crossed for you, too.
Jill, hope you enjoy the trip to the seaside and that it cheers you up 🙂
I've just got back from the reflexologist- never had it before- very sceptical at first but she said all kinds of things which I thought 'how does she know that?' (like at a seance!) e.g. your period is due, you have a tense neck, your surgery was on your right breast, your digestion is disrupted etc- many things she might have just guessed but Im willing to go back as it felt lovely and I was very relaxed at the end - anything is worth a try to help me get through this!
Well, off to eat some lunch in the garden. Good luck today's drinkers.

[deedee215]

Glad it's not an infection, but must be so annoying for you that cough hopefully clears up soon for you. Take care
Deedee xx

[Marionblue]

Morning everyone

Back from the GP's. He said there is definitly no infection in my chest. It's the pollen and I'm stuck with it until pollen levels go down or we get a good long downpour. He gave me a cough supressant which he said only works in about 15% of people so don't hold my breath. I said, chance would be a fine thing with this cough!!!!!
Apparently most people he is seeing at the moment have pollen related problems.

Its just really annoying, as, since my bones have stopped aching, I would be feeling ok now. Its like my nosebleeds in the first cycle, if one thing doesn't get you another will. Grrrrrrrrrrrrrrrrr.

Marion
XXX

[deedee215]

Morn jewels,
well the sun has gone here in Glasgow suppose to be back tomorrow. Good luck Sandra, flippanfox and Debs at the bar today.
Marion hope you see someone about this cough of yours don't want it going into an infection.
Jayney I know how you feel about having to go through chemo 1st then surgery but for me I preferred to get chemo out the road 1st as I had seen my sis, sis n law and niece go through chemo and so I wasn't looking forward to it. Personally I think I can handle surgery better so this for me is better.
Cress looking good in profile pic and good luck for round two tomorrow.
Chelle have a great day in Haven.
Jill I know what you mean bout diet. I too definitely have put weight on all I am eating is ice cream and various different puddings. People come up and can't believe I am on treatment because they are expecting this wee frail thing but not me who has put on about a stone.
Fiona I hope they get your meds sorted out for you this time round and no more nausea for you. I must admit this cycle has been ok for me apart from nasty bleeding piles.
gus hope your bloods are ok.
To all the other jewels keep shining.
Deedee xx

[Izzy1969]

Hi all thanks so much for your support after having a bad day yesterday.
Jayne and Jill - hope you're feeling well after yesterday.
NijJ - sorry you've had such a bad time lately.
Faye - you just made me laugh with your comment you'll be requesting a refund on the wig from China!
Chelle - Thanks for your support and for adding me to the huge list of Jewels! You're doing a great job. I'm speaking to my BCN today and hopefully she'll be able to advise why the chemo was changed. Thanks also too to Emma and Artemis for your support.
Joan - Thanks for the virtual hug, I needed it! Sorry you've been having trouble with your picc line, hope things are settling down now - you seem very positive. It's good to talk with someone who understands how tough neo-adjuvant is, not so much physically but mentally. I too just want rid of it. I can't even bear to touch the area so I'm not sure if it's shrinking. Can I ask do you know yours is shrinking? I wasn't sure if you've already had confirmation? I won't know until my mammo/ultrasound next week (half way point) to check if the chemo is working and the waiting is a nightmare. If it's not then they'll change the chemo. From your point of view, it does seem strange to have AC when everyone else seems to be having FEC, but I agree what choice do we have? We have to trust their decisions and they must have good reasons even when it's not clear to us!
Jayney - I totally understand how you're feeling, you're not alone. The thought crosses my mind too how long the road ahead is, but a good friend gave me this advice - try not to think of the big picture. If you can, try and break it down into smaller pieces and just focus on the next week/treatment, not all the months ahead. This can make it a bit more manageable, although obviously it's not always possible and I do have thoughts like you did yesterday. Really hope you're feeling better today though. Sending you a cyber hug.
I'm feeling fine this morning and keeping well stocked up with anti-sickness meds. Grade 1 fuzzy felt hair is really coming out now! Had to go to A&E last night (a big bruise came up at the injection site and there were concerns about leakage but luckily it's just bruising), anyway it was the first time I'd been out in public with no hat or wig. I was so tired and emotional I just didn't care, but it was okay. Might go au naturel more often now!
Finally good luck to all the Jewels at the bar today, hope all goes well. xx

[jmeg]

Hi again had a shower and feeling a bit like me again as in still knackerd but feeling bit more positive rang BCN but shes not in till tomz so going to try the e45 massage technic mum bought me a electric massager but not used it because conflicting comments and dont want to make it worse,well need to nip back to hospital for lost prescription for WBC injection that I have to have today and suppose I better get some shopping before me and the dog starve he is easy I am harder to please just cant find anything I fancy so just wonder round aimlessly and buy c**p between steroids and diet going to look like 10 ton tess.
catch up later xx

[nanniereeree]

jmeg. It's the only way I could have got through this 🙂
Also telling my hubbie not to be nice to me as that made me feel worse ( he enjoyed it I think)
Marie

[Suffolklady]

Morning shiny ones, thank you for lovely comments on my new look!
big hugs to the girls at the bar, hope it all goes ok. Can't believe I'm back on round 2 tomorrow. Really not keen (well, who is?!) and having port done first which I really want but is still scaring me a bit.
have a great day. Hope everyone feels better/continues to feel well x

[jayney234]

Izzy Please don't worry about not getting the full monty with your chemo. They do know exactly what they are doing and would not put you at any risk. I really understand what you are going through as my previous post will tell you. It is very difficult for us neo-adjuvant ladies as Joan has already said. I too am feeling it at the moment but as has been pointed out there are very positive results from doing chemo first and they can monitor us and would know if the chemo wasn't up to the job and would change it. Thanks to all for the kick up the proverbial and I will try and stay positive. Have faith Izzy - we will get there. Jxxx

[pat_1949]

Jill, my hand and arm swelled up, not a lot but enough for my watch to be tight, spoke to BCN she said to use moisturiser or E45 and massage in upward movements from the hand up, it did help, give it a try. Xxx

[jmeg]

Morning Jewels a very early one at that sleep faries packed her bags and left town again slept very little wonder if this is going to be one of my regular SEs I am beginning to see why they use sleep deperavation as a means of torture round about now I d sell my granny (if I had one) the other thing thats bothering me is my surgery arm and hand has swelled up so going to have a quick read up on that and see if I can find a reason for that suppossed to be going away thursday for a couple of days with D & GD thought the sea air would do me good and its only an hour away more than likley become target practice for the seagulls with the bald pattie lol
Nannareeree send me some of that PMA the only attitude I ve got at the moment is the for f**k sake one!!!
Goodluck to everyone at the bar today specially to gus.
Sorry I am so down hopfully will pick up later I dont normally do self sympathy but unless i get some sleep maybe an emoitional wreck today
Jill xx

[Glasgow_Girl]

Gus - fingers crossed bloods ok tomorrow and you can go ahead as planned.
Fiona
x

[Glasgow_Girl]

Evening all

Been out with a friend for a couple of drinks (soft ones, got blood tests tomorrow) in local beer garden. Was lovely, chatted about all sorts, no BC.

Chelle - enjoy your day out at The Haven tomorrow, look forward to hearing all about it. The trip to Kathryn Jenkins sounds lovely, hope the sun will still be shining for it.

Nicj - so sorry about that total mess up and spoiling your holiday plans, it's awful. I'm on cycle 3 on Thurs too, so we'll be there (virtually) together. Hope you won't have any more delays.

Cress - love your profile pic, you look great.

Jackie - I've got onc tomorrow before cycle 3 on Thurs. 12 days of nausea cycles 1 and 2 too much for me, really tough going. Although cycle 2 was less severe, with different meds, the nausea still lasted just as long, so I'll see if they can offer anything else for cycle 3. Would be interested to know what you have been prescribed this time?
Hope you have a fab time in Cornwall and fingers crossed for NO SEs this time, so you can enjoy it with the rest of the family. Great having a GP around, so you can relax and no worries.

Jill - glad you back home ok and hope meds will be good for you this time.

Marion - hope the doc can sort out that cough tomorrow. Poor you, it must be awful.

Joan - that is awful about your picc line, I can't believe that they " forget" to arrange the DN visit , then the DN doesn't know how to do a basic procedure and just leaves you high and dry. I feel so angry for you, just as well you're so good at explaining things - you shouldn't have to - and that you are coping so well. Big hug from me .

Night- night everyone,

Sandra, Debs, Flippantfox and Gus - hugs for tomorrow and hope you'll all be ok,

Fiona
xx

[Marionblue]

Vicki - I'm on Herceptin for 12 months. My nurse did mention that there was a trial but I haven't been asked to take part. I think I would turn it down. I want to throw everything I can at this and wouldn't want to run any risks. I really admire braver people than me who put themselves forward for trials though.

All the best Sandra, flippantfox and Debs for tomorrow. Hope to hear back from you soon.

Emma - If the GP is no help tomorrow I will certainly be ringing the unit, its wearing me out.

Good night lovely jewels.

Marion
XXX

[Guest user]

Hi everyone,
thanks for the good wishes for tomorrow fecking FEC 3, have been really dreading it, but was given Emend last time and it did stop me vomiting at least. Other SEs still really bad though. I'm in 2 minds whether to go for the CC tomorrow as I have bald spots on my head and feel embarrassed to go out without a scarf on already. My OH chopped my shoulder length hair really short just after my FEC2 as it was coming out in huge clumps and when I washed it I couldn't get a comb through the matts - aaaaarrggghhh! I have never seen so much hair as in that bathroom. So, I will decide about the CC tomorrow. Like Janey, I have been really emotional and just wanting to give up the chemo, but I'm kind of resigned about tomorrow now it is nearly here.
Love to everyone recovering from chemo and anticipating the next lovely dose, xxx PS I've had a really annoying cough since FEC2 too, so I'm hoping my bloods will be ok, I hate the thought of being postponed ...

[Melrose15]

Evening Jewels.
Jayney sorry you're feeling alone. I know the ladies on here having chemo first will be ble to reassure you as scans have showed good results so far. Big hugs and PM if you feel like a good moan xx
Marion I'm starting to worry about your cough! Do you think it'sworth mentioning to the onc? It must be getting you down x
Faye shame about your wig. I ordered one and like Chelles it was ridiculously long so won't be bothering with it. Love the whipping off of scarf story Jill. Good for you 😉 And Cress loving the pic. I'm sure they'll be a few more 'answering the door bald' stories as we get used to embracing our inner Kojak!
Joan I can't believe the DN left you. She's obviously not very reliable. Hope next week is better.
Jackie I love love love the idea of you hoovering your head. I've been blowdrying mine and hoovering after. Obviously missed a trick. Really made me laugh. Thanks! 😉 Oh and yep! Go for that holiday. Why not?!
Chelle have a good day tomorrow at Haven. Will look forward to hearing all about it.
Glad everyone's safe back from the bar. Nic, what a bummer. 😞
Well looks like I might get Emend for my next cycle as spoke to the unit today 🙂 Funny but since that first day/night I've been fine. No nausea or hangover but I can't go through that vomiting again so wish me luck!
Welcome Izzy. Sorry I can't help with your question. I sure you'll get some answers other Jewels, from starting a new thread or phoning the helpline. Keep in touch and take care.
Good luck Sandra, Debs and Flippantfox for your cocktails tomorrow. Gus I have everything crossed for you xxx
Sweet dreams
Emma xx

[nanniereeree]

Janey234, of course it is worth it when you consider the other option... We all have had low days but we get through them just think of the future.
keep positive and try to enjoy the days when you don't feel crap.
I am now in the car park I put myself through chemo when I didn't need to have it so I couldn't have any what ifs later on.
we are all worried that it won't work but it will . P M A positive, mental, attitude is the way forward..
moan all you like we are all in this together and will listen xxxxxx
marie

[jayney234]

Hi Jewels I have been trying to be so positive for past 2 weeks after Fec 2 - but - am having a major meltdown as everything I seem to read points to negative outcome. I am having neo-adjuvant chemo before surgery and I am finding it increasingly difficult to stay positive. I know all the reasons why chemo first but I just want rid of it. Such a long road ahead and my OH just keeps saying " it will be fine I just know it". I know he is trying to be positive for me but it makes me so irritated and just makes me think of the negatives. Such a long road ahead and I just sometimes wonder if it is worth feeling like c....p for unknown results. I think I have been spooked by posters saying that lymph node involvement is so serious and as I know that I have at least one as positive I am panicking and wondering if it is all worth the pain. Sorry if this is a moaney post but I am feeling totally alone at the moment and don't know who to talk to. Jayney xxx

[YB54321]

Cheers Vicki - I'll ask him x

[Lols]

Hi fimbo sorry to but in but was reading your post regarding picc line and withdrawing before flushing. I'm a staff nurse and have worked in the district and we are taught how to do it, it's not difficult just requires aseptic technique (sterile conditions). As a nurse I feel ashamed she left you and that The two separate nursing teams are not communicating. I'm not advocating this but a written letter of complaint normally gets things sorted as all complaints have to be addressed by managers, and all people involved are spoken to and normally have to give statements plus they have only so much time to answer complaints , so it would benefit you as your not at end of yet. I'd be bloody mad too. There's 2sides to the NHS is very stressful at times but if you have a job to do then it needs to be done correctly, you could be doing this dn a favour because its a skill she needs to acquire, especially in community, hope it doesn't happen again take care x

[artemis17]

Chelle the trial is called "Persephone" and has been running since 2007. Apparently if youre in the 6month trial group but then decide you want to opt out and have the full 12 months you can, and if there is any negative issues you can opt out too, so it may be worth checking it out..

[fimbo123]

Izzy - sorry it seems like I was ignoring you but your post didn't show up.

Firstly, I think that some of us having nei-adjuvant chemo are having a harder time psychologically than those who have already had surgery. I can really relate to that "time bomb ticking inside you" feeling. It is tough, but hopefully we do get extra feedback through experiencing our lumps shrinking - I've been told it's a real confidence boost in the treatment.

I'm having AC then Docetaxel (T). I asked my onc why not FEC and he talked about original neo adjuvant trials being done with AC but how most UK centres have moved to FEC but he won't because they use AC in the US. Didn't seem like much of an argument to me, but I don't have a lot of choice. Ask your onc what the effect of removing the C - he may be able to reassure you. Or try your bcn first if there's no chance of getting hold of your onc.

Don't really know much about what the different drugs in the combination do, but sending you a big virtual hug xx

[YB54321]

Yay Vicki - great news re the portacath! I'm HER2+ but not heard about the 6 month trial - however if it means getting treatment finished 6 months early I'm all for that! - I'll ask my onc when I see him on Weds as I know he's involved in a lot of clinical trials x I'm on an all day introduction course. It's a chance to meet some other people and a taster of some of the sessions they run. Teach you some relaxation techniques and how to stay healthy etc - plus they throw in a free lunch so sounds like a day out if nothing else!

Joan - yet another example of bloody shocking treatment! Anyone would think we were asking for the moon on a plate! It's not good enough!

Sandra, Debs, Flippant (and hopefully Gus) - good luck at the bar tomorrow x

[artemis17]

Evening lovelies

A pretty uneventful day here, worked this morn then Onc and bloods this pm. All fine for my next shimmy to the bar on Wednesday, no change in meds, so yes to emend, no to steroids and cold cap on ice!. Practically melted at Zumba tonight so i may almost enjoy the head freeze lol.
Have been asked to take part in a Herceptin trial, as there has been a study done saying 6 months of it is as effective as 12...Not sure whether to or not, any other Her-2 Jewels been asked?. Oh and im to get a portacath although not for a couple of cycles as my hopsital dont routinely do them, but at least i'll be able to get back to the gym and combat once the line goes. :-).

Joan thats shocking being abandoned like that by the DN!. I hope you get an apology and better treatment by both sides talking to each other. Im not supried youre cross, you shouldnt have to sort the situation out.

Izzy sorry i cant offer any insight to your situation, but hope you get some explanation.

Chelle whats in store for you at the Haven?. Good luck in this heat anyway. Enjoy Manchester too, sometimes those closest to us are the ones we need to get away from!!.

Have a great time in Cornwall too Jackie, the seaside always satisfies the kids, even if it not sunny. Hope your car has air-con, i certianly found it helped on the 5 hour journey last week.

Hope those at the bar got on ok today, i feel as if im wishing the summer away but i just want to get to october and the chemo be done. Hope evryone else is doing ok, especially those that arent up to posting just now... Gussie hope the bloods come good for you.

Well, night all, catch up tomorrow.
xxx

[YB54321]

• jmeg - Jill 15/7 (cycle 2)
• Cassie1 - Jayne 15/7 (cycle 3)
• Izzy1969 - Izzy 15/7 (cycle 3)
• Maxie - Sandra 16/7 (cycle 2)
• pointy - Debs 16/7 (cycle 2)
• flippantfox - 16/7 (cycle 3)
• Gussie-WW - Gus 16/7 (cycle 2)
• Artemis17 - Vicki 17/7 (cycle 2)
• Suffolklady - Cress 17/7 (cycle 2)
• cazzer1970 - 17/7 (cycle 2)
• Fimbo 123 - Joan 17/7 (cycle 3)
• titus4t - 17/7 (cycle 3)
• NicJ - NicJ 18/7 (cycle 3)
• Jackiebee - Jackie 18/7 cycle 2)
• Satsuma - Fi 18/7 (cycle 2)
• Katherine10 - Katherine 18/7 (cycle 2)
• Glasgow Girl - Fiona 18/7 (cycle 3)
• Janet C - Janet 19/7 (cycle 2)
• LinsLleisio - Lins 23/7 (cycle 3)
• BeckyJoan - Becky 23/7 (cycle 3)
• jayney234 - 23/7 (cycle 3)
• ChelleB15 - Chelle 24/7 (cycle 3)
• Marionblue - 25/7 (cycle 4)
• Spurs79 - Claire 25/7 (cycle 3)
• TaylorJ - 25/7 (cycle 3)
• ethel1 - Elizabeth 29/7 (cycle 3)
• Esther_1986 - Est 29/7 (cycle 3)
• Meggy-moo - Agnes 31/7 (cycle 3)
• MarthasSOS - Martha 31/7 (cycle 4)
• pat_1949 - Pat 01/8 (cycle 3)
• Melrose15 - Emma 01/8 (cycle 3)
• Deedee215 - Deedee 01/8 (cycle 3)
• Flip Flop - Faye 01/8 (cycle 3)
• March13 - Ann 01/8 (cycle 4)
• LaineyK - Lainey 02/8 (cycle 3)
• Linsey 50 - 02/8 (cycle 3)
• Trish1303 - Trish 02/8 (cycle 3)
• ambercatz - Jan - 02/8 (cycle 3)
• PeachyPal - Emma 03/8 (cycle 3)

[YB54321]

Izzy - so sorry ive not added your dates to our list, and even more sorry that you are having a bad time. I know Martha was having problems but not sure if they have changed her treatment plan or not. Im having EC-T (without the F) and a foot of the women are having different drugs and numbers of cycles. I'm sure they would only change your plan if they thought it was more dangerous to your health than taking you off it. Why don't you ask for an appt with your onc to discuss exactly where you stand and at least you can tell them your concerns or ask about alternative treatment plans if you are worried this isn't throwing everything at the BC. It's very difficult when we blindly have to put our faith in the hands of others, especially when we all get told different info to start with.

It might be worth posting a new thread to see if other ladies are in the same boat and also the helpline is really good on here. Know that we are all here for you and sending all the virtual support we can x

I'll add your dates to our list right now x

[fimbo123]

A bit hot, isn't it?

Maxie - you're not alone in feeling more tired in week 3. I actually have more energy in week 2, been exhausted this week. The heat doesn't help, I guess. Glad you had a good weekend with your family.

Gus, that's really frustrating. Let's hope the count has picked up by tomorrow. I'm going for bloods in the morning, fingers crossed.

Marion, hope your cough is better soon.

Jackie, hoovering your head?!! Thanks for the best laugh I've had in ages 😄

Fiona - so glad you've been feeling better :-).

Jill, glad it went ok. Hope you are ok too, Jayne x

NicJ - how really awful, I don't have words. I really think sometimes the health professionals forget there is a person who experiences consequences at the end of their decisions. I'm so so sorry it messes up your holiday and everything.

I have had my own (v minor in comparison) picc line care boggles. Last Thursday, stayed in all day waiting for DN to come and flush it, she never came. Phoned chemo unit - "oh sorry, we forgot to refer you!" so I had to go there the next day. When I went they tried to withdraw blood before they flushed, and they couldn't withdraw any fresh blood (sometimes happens apparently, to do with positioning of the end of the line). However, a tiny amount of old blood was still in the line and had formed a clot. This is nothing to do with my previous blood clot but can just happen if old blood gets stuck in the line. However, if they had flushed it back into me it could have been dangerous, so they told me to make sure to tell the DN to try to withdraw before flushing.

So, on Friday the DN did turn up. I asked her to withdraw before flushing and she said she couldn't/wouldn't/didn't know how to do that. I asked her to wait while I phoned the unit, the line was engaged and she just left, advising me to go to the unit and she'd phone me to check in the afternoon. I was raging, had to bring middle son with me because I had no child care, but eventually got it cleaned. But still the chemo nurses won't talk to each other. Messages are faxed or sent through me, whilst I just want someone to treat me. Sometimes I wonder what would happen if I wasn't with it!

Think I need to cool off now!

[Izzy1969]

Had my third cycle of chemo today and I'm really upset. Can anyone help? I'm having FEC but was only told today that I wouldn't be having the "C" part as my liver is not coping. I just cried. I keep thinking I have this tumour inside me and I need all the drugs I can get to tackle it and now I can't even have them all. The nurse was lovely and tried to reassure me that there's still a long way to go and that they're protecting my liver, but I just want to know that the chemo is actually working because right now I feel like I've got a ticking timebomb inside me. I missed seeing my usual onc at pre-chemo last week and wasn't prescribed all the drugs I need either and had to ask for them today. I feel so low and tearful. Has anybody else experienced this /or is just having FE without the C? I really hope it went well for all the other ladies having chemo today.

[YB54321]

Just done a trial run to The Haven as its off the Leeds inner ring road and in rush hour it's a nightmare if you don't know where you're going, but found it fine so should be ok tomorrow. Im going to wear my wig but am packing a Buff as well as I can't stand a wig all day if its hot in the room. I also keep worrying I'm going to fall asleep! I can't remember the last day I had to concentrate for 7 hours solid! I know I'm bring daft seems as every other person will be in the same boat.

Ive decided to go to Manchester again this weekend as my OH has still got his head stuck up his rear and his face depresses me so I'm going to go and see Kathryn Jenkins with the folks. It should be nice weather and we are going to take a picnic and some deck chairs etc.

Gus - keeping everything crossed your counts pick up so you have no delays x

Marion - hope you improve soon I can't bear when you get a persistent cough that nothing will shift 😞

Jill - glad you're back from the bar, scary how wrong they can get the meds!

[Gussie_WW]

@jackiebee LOL you're on!
just had a call from the onc nurse to say my neutrophils are borderline low, so I'm to go in early tomorrow for a further blood test and hopefully I can go ahead. As I've been feeling absolutely fine this week I'm gutted - and furious! Not that either emotion is very helpful. It is as it is. I just want to get through this without delay. you'd think I'd have have learned I have no control over any of this by now ...
Suppose if it doesn't go ahead on schedule I will be able to see my aunt on her b'day on Weds. She's in a local nursing home with mild dementia. Am heading over there now, with her card etc. Trying to decide whether to roll up in rock chick wig or scarf. Haven't told her bout the cancer yet. I'm her NOK & she gets easily upset ... & her short term memory's shot through. I'm thinking wig coz she always wore wigs in the 60s /70s and we had a great time as kids trying them all on. The beehive was the best. Tragically for me at this point the heirloom wigs are long gone!

[Marionblue]

Jill Posts crossed... Glad your back ok.. As they only have to give the meds wrtten on your notes, you wonder how they seem to miss things so often. They missed my steroids on my first cycle. Ah well if they were all perfect like me

Marion
XXX

[Marionblue]

NicJ - Didn't post yesterday as I was so angry over what happened to you I was afraid I would write something libellous. I had better say uncaring and inept and leave it at that. I wonder if when they looked back on their day, they thought they had been competant and professional.

Cress - Great pic. I've turned into my Dad. I can remember him sitting in his chair with a hat my Mum had knitted for him that loiked just like a tea cosy on his head. Thats me in my night cap but I've given that up for now just too hot.

Jayne and Jill -- Hope today leaves you well with no SE's.

Jackie - Know what you mean about the little spikey bits. My shower is over the bath andI thought once my head was clipped that would be it but the little short ones get everywhere. Not hoovered my head yet but you never know what you might be driven to.

Well, I'm back to GP's tomorrow with this darn cough . Got a feeling it may have turned into bronchitis which I usually manage to get once a year but not usually in the middle of July. Don't care what he gives me, I just want to stop coughing. The farmer cut another field oposite our house yesterday. I could have wrapped his combine harvester around his neck. Wish I could afford to move up to Llandudno as I'm told hayfever is far less a problem on the coast as the wind is usually off the sea so no pollen. Fingers croosssed for lottery win on Wednesday.

Marion
XXX

[jmeg]

Well back from the bar bit longer than last time,didnt get any new anti sick tabs but got an injection thats supposed to be good and last 8 days turns out the possible reason i was sick after first lot was they forgot to give me the anti sick tablets thats you take for 2-3 days after only gave me the ones you take throughout lol also given me dexamethasone steroids again but doubled the dose so should be bouncing of the walls after them,they forgot to send my steroid injection over so got to call back in the morning to collect it or I could of waited 2 hrs for phymacy to deliver.
Feeling good at moment so going to enjoy some garden time and hope nothing kicks in catch up later
Jill xx

[Guest user]

Gus with combination of circus clothing and hair hoovering we could go down a storm at the next Edinburgh Festival!

[Gussie_WW]

Am off to hoover my head now!

[Gussie_WW]

New SE : In the health food shop me in a head scarf attracted the attention of anarcho hippy type who until then had been boring the cashier with tales of his home made circus clothing

[Guest user]

Thought you'd like a laugh this morning ladies- inspired by my husband hoovering the bath and annoyed with my continuing shedding of little prickly hairs I have just hoovered my own head with the soft furnishings attachment on the dyson - felt lovely and gave great results!!!
Faye I haven't had pain in 'good' boob only 'bad' one- but I have heard about other women who have had all kinds of odd sensations in both breasts- I think the treatments disrupt our hormones significantly so all kinds of effects are possible.
Thanks for words of encouragement about our holiday - I'm determined to try to get there without vomiting in the car!

[Maxie]

Posts just crossed!...Jackie, yes I'd say go for it re hol....just try & keep cool during the journey, windows open/ air con etc,maybe plan a couple of stops on the way....great that you've got a GP to hand too, thats reassuring....hope you have a nice restful time while the children can enjoy themselves too....xx

Faye, thats disappointing re the wig :-(....hope you get a refund, I've had stabbing pains in mainly my 'bad'boob but also in collarbone & good boob too, dont know what to make of it really, will mention to ONC tomorrow....xx

[Maxie]

Morning All,

Lots to catch up on here!....

Nic thats so bad about your treatment, read about the way you were treated at the hosp too, what a disgrace. Hope you can still have your holiday somehow....xx

Jayne & Jill, hope all goes well for you both today....xx

Jill,good for you whipping off your scarf, honestly some people are so thoughtless!!(or just thick?)....xx


Jayne, know how you feel but try & look on it as your half way through after today....xx


Re hairloss, hair shedding upstairs downstairs & in my ladies chamber!!! (day 20) .....tried to avoid the knicker net by getting out my trusty wax strips & removed most of hair 'downstairs' with absolutely no pain (was obviously hanging on by a thread) very weird as bikini line usually worst for pain!

Both my daughters have seen me baldy this weekend & response not too bad at all, managed to have a giggle.....had a lovely weekend away, went mainly to visit OH's daughter & his two grandsons one of who is only 5 weeks old (he's gorgeous)...lots of cuddles & kept my wig on as didnt want to frighten 7 year old, also thought would be a good test of wiggy as children dont hold back if you look a bit different, he didnt bat an eyelid bless him so given me confidence in my wig (opted for Sandy as most like my old hair) ....must say tho couldn't wait to get it off as soon as got to ED's....was so hot & a bit itchy, be better in the winter I think.

Cress love your picture, we look like twins a I have my glasses on most of time too!!


Fiona & Vicki you're both sounding really great at the moment, Vicki glad you enjoyed your week away in the sunshine & Fiona you sound like you're having a really good third week!....:-)


Chelle, hows the head?....whats this about you joining a gym???....seriously? ....I feel like a slug at the moment, dragging myself around!.....am I the only one who's been more tired in the 3rd week?....thinking its just catching up with all the sleep I've missed in prev 2 weeks....may join a gym when Im back on the steroids, may get popeye style arms tho!!!....;-)


Am burying my head in the sand about tomorrow & trying not to think about it too much, just know its got to be done, no choice but to soldier on GI Jane style!!!


Catch you later Sparklies

Sandra xx

[Flip_flop]

Morning sparklies,
the sun is out here today this morning, not been coming out til the afternoons the last few days.
my wig from china has arrived- i will be requesting a refund!!!!
good luck jill and jayne at the bar today. Imagine that this time next year you really can be sipping cocktails on a beach somewhere
fiona- meant to say about a week ago, wig really suits you.
chelle- go steady now we dont want you back in hospital
nicj - what a bummer - big virtual hug sent
cress- loving the picture
jackiebee- we were maybe going to go to cornwall later in summer but its about 7 hours so dont know if its a bit far. I think as long as you feel up to it and take care go for it.
vicki - ive also been referred for genetic testing due to my age, had the initial questionnaires but not heard anything since then apparently can take months.
since chemo both boobs have been painful and tender, anyone else had this???? Think i remember somone saying surgery side was but both mine are.
enjoy the sunshine
faye

[Guest user]

Morning all. Good luck those at the bar- sorry NicJ that you wont be there too, what a bloody mess.
Jill I loved the story about hte customer who came back with a fan- how lovely.
And Chelle- I can't believe someone called you a pirate!! People are strange aren't they. I went out in a headscarf yesterday to drop off my daughter at a fundraising bag pack in Morrisons- got everything from sympathy smiles, full on stares, and complete blank 'I'm desperately not looking at you' reactions.
Despite the grade 1 hair shave on Friday mine is still coming out everywhere- I have a LOT of hair- so much so that my husband actually HOOVERED THE BATH this morning after I had finished!
Oncologist this afternoon- going to see whether they can up my sickness meds because that was my major se last time - particularly because we plan to travel down to cornwall this Friday (the day after dose 2 ... crazy???). It is perhaps not as mad as it sounds- there is a family reunion going on and we have rented a self catering cottage on a complex with pool, tennis courts, etc by the sea. So I thought if I can bear the journey at least the kids will be entertained whilst I sleep off my 4 day hangover, and the OH's cousin will be there who is a GP, so I feel quite safe. And its the only holiday we will really get this year. I can't and wont let cancer ruin my kids whole summer holidays.
Right, going to try to do a bit of work this morning before starting the packing... Have a good day everyone x

[Suffolklady]

Thanks Chelle, I find myself strangely liking my 'new look' aside from the reason for it, I've had lots of lovely compliments from friends and family and this morning, nipped to M and S without my hat! It's so hot anyway......

[deedee215]

Good luck at the bar Jill and Jayne. Nicj so disappointing for you to be delayed hopefully the phlebitis clears up in time for you In time for Thursday.
Deedee xx

[YB54321]

Aw NicJ - that sucks that you've been messed around! It's hard enough to get through this without idiots holding things up!

Cress - loving your profile pic x