Very quiet - hope that means you’re all ok!!
x
hi carol, i guess you are livening up? I don’t want to speak too soon but so far so good. Had a big sick yesterday after EPI, which seems to be my patter. Feel horrid then sick then lots better. Could even focus on a bit of telly and newspaper. No fog yet. MAnaged half hour walk today and don’t feel half as tired as before. Don’t want to speak too soon tho! wish me luck for continued better days. xx to everyone carmel.
Hi Carmel - so that’s the last epi? Lucky you - hope the se’s improve. Isn’t it mad that a walk etc can help you feel better even when you feel cr*p! It really helps me to get out & walk - still missing swimming tho! Have they told you how your cmf will go timing wise?
x
Hi Carmel
Glad you’ve now finished your epi. Hopefully the cmf will be kind to you, as my 1st one has been. It is a bit strange having to go two weeks running but the se’s have hardly been noticeable. I’ve managed a couple of trips into town Xmas shopping plus a good night out at the theatre. Went to see Witches of Eastwick, with Marti Pellow as the lead. It was great. All being well we’re off to Lincoln to the Xmas market tomorrow, so expecting to be tired when we get back. I’m just hoping my next double dose will be as kind to me, as the second dose is on 22 Dec. Hopefully we are going down to youngest daughters for Xmas, which will make a change. I can’t remember the last time we didn’t have Xmas at our house.
Hope all you lovely ladies are feeling OK.
Jackie x
Hi,
Lalala lots of luck and thinking of you on Monday. Put it out of your mind till Sunday bedtime if you can. It will be quick but I know still scary till its done. How do you feel about using veins again? Hope the rest will go well for you.
Carol, sorry we all went off line. How are you doing? My memory is long gone so I struggle to rememeber where you all are. It seems to be going along quite quickly to me but know there are such long days and weekends on chemo. How is the Christmas shopping going? I went out today with 2 of my daughters and more or less finished mine off, thank goodness. Woops I have forgotten to post my overseas cards though, so past their deadline.
Carmel congratulations if that is you through epi, what a relief. Hope it goes off smoothly and that cmf turns out better for you. People seemed to be a lot better on one or the other, when I was going through. I was never sick or felt sick despite having dire tummy and bowel troubles. Maybe I would have been better to get rid of it! Luck of the draw I suppose. Good luck for the next few days. Jackie - reallly glad to hear cmf is going well for you. I think the biggest challenge is going back in there and the extra blood test in each cycle. It is a good route to get things done in between though. Wow you are getting out an about, good for you. hope it continues that way.
Have a good weekend if you can. I start rads on Tuesday and finish on 31 Dec. Day 2 of my nolvaldex-d (tamoxifen brand)tablets and ok so far.
lily x
ooh, good to hear from you all. Jackie you sound in flying form. Go lady go. Very encouraging to hear about CMF although because im on a different trial arm im getting the capacita whatever (xeloda is the trade name i think). My veins are really sore so i feel very lucky to be swapping to tablet chemo. Carol… you are only just behind me my friend… and you are so right about getting a walk and i miss my swims too… Lilly, onto the next step in a big way. I wish you all the best with the rads… Im sure they aren’t easy but i gather they are more manageable than EPI!!!.
Layla, sending you my best wishes.
Now i don’t want to brag but this fourth and final epi is freaking me out. Im waiting for the shit to hit the fan but so far so good. I cooked dinner, been out for long walk today… put kids to bed, done some tidying… all pretty basic but unthinkable tasks in my first week during my other cycles. I just don’t get it. I have felt so terrible on 1& especially 2 then a bit better on 3 and seem to be flying through this one. I hope this continues as the effects of the steroids wear off tomorrow. I wonder if my body has built up some tolerance for this drug… I really hope im not back to square one when i swap to the next regime.
On a more negative note… iv had another load of hair loss which my daughter especially finds upsetting. 'All the other mummies have hair and you don’t" She also told me she doesn’t like my wig, because it is blond and i don’t look like her mum! She prefers the head scarfs which is fine with me. I only really wear the wig when im going out in the evening any way. Its hard on her because she knows enough at 10 to worry, where as my little boy at 5 sees the world slightly differently. I reassure myself that she has good support and great friends around her. I wouldn’t want to reassure her 100% anyway because i don’t think its fair … But she knows im a tough cookie and im sure she will be too.
Thanks for listening ladies.
xx to all of you
carmel
Hi Ladies,
Been offline for a few days, thanks for all your messages. The nepogen tablets to stimulate white blood cell count have made me fluey and bones ached especially after the last one on Friday. I’m feeling fit and well today though, and am all ready to go round to hospital at 1.30 - am really looking forward to Hickman line being taken out so my body will feel like normal. It’s not such a complicated procedure as yours Lily, so I expect it to be over and done with fairly quickly (fingers crossed). Glad to hear the rest of you seem fighting fit. I was mainly OK, very few s/e, until after my 4th CMF, then I got an infection that has seemed to drag me down since. Will let you know how it goes! Best wishes to all, S xxxx
Great to read all your posts - Christmas is creeping up on us and I’m glad you’re out and about getting stuff done! Carmel - that’s amazing, hope my epi 4 is as kind. Maybe as you say your body starts to tolerate the lovely drug. Hope your hair soon starts to grow once you start cmf - can imagine it’s hard on your daughter. Having 3 older sons they react differently but do see it as a visible sign of the bc.
Lily - very best of luck with your rads - hope they’re a walk in the park!! Christmas shopping has mostly been done on line - tho my boss has put me on sick pay so it won’t be an amazingly generous Christmas this year (problem with teaching in an independent school). We’re also having a break from cards this year - bah humbug do I hear you say!!
Lalala - hope all goes well for you today - thinking of you
Jackie - what a great time you’ve been having - long may it continue!!
I’m off to make the most of my last few “normal” days before epi 4 !!
xx
just a quick pop in… still doing good. Think iv over done it a bit today and feel a bit tired but still very well. Busy busy sorting my social life out. What will i do when i have work in my life again? good to hear all your news gals. Enjoy the days before epi 4 carol… good luck layla and sending best wishes to J and L.
xx carmel
Hi,
I agree, I am currently contemplating how to fir work inyo my new life. I have just met all my work colleagues for a christams catch up. I was worried that they might all have ‘that look’ on their faces but all acted normally. What a relief. I hate that look that makes you think ‘oh I look like a victim.’ I have not eaten that much since forever, it feelk like and totally stuffed now!! Can’t wait for the acid to start. As epi 4 knocked me sidewards I am very impressed and pleased for you Carmel. Don’t overdo it though until you are sure it is ok. Don’t worry your hair will be wizzing back in on cmf before you know it. Lalala, hope today went well for you and glad the jabs are keepinh you on track. The side effects of them seem to affect some but not others, hope they are bearable for you. Fluey is how I have heard them described before. Take care and stay away from any bugs if you can. Carol I have had SSP and am now moved on to incapacity pay, which everyone is entitled to but a measly £64 I think they said. I have been waiting since mid Oct and they are paying me for the first time this week! Still if you wait that long at least it is a reasonable amount! You sound very Christmasy, so am I. I love this time of year, but ditto not so many pressies this year. Jackie hope you had a great time
Love
Lily x
Hi everyone
Well it just gets better. Just had a phonecall from our local centre to say that they have a vacancy this pm on the LGFB course. Couldn’t have come at a better time. I’m hopeless at makeup and it’s the work’s Xmas lunch on Friday, so hoping to finally get some tips on how to apply it without looking like a clown. You’d think after 56 yrs I’d be able to do it by now, but I’m one of those people who only use it on special occasions, and then not very well. Have any of you managed to get on one of these courses? I understand that they send you away with a bagful of expensive items.
Friday is going to be a strange day, Onc and bloods at 9:10 (hopefully not delayed too long!!) and then on to the works Xmas dinner. It’ll be strange because I will be seeing some of the people for the first time since my dx in July. Should be a good do though, and I’ll try not to lose my wig on the dancefloor! doing all the party dances. That’s if I’ve got enough energy.
Hope you are all feeling good today, the sun is shining here and it always makes me feel better.
Jackie xx
jackie, I did the LGFB course before my chemo started and I thoroughly recomend it. I sat next to a totally irreverant 70 year old who had me in stitches. We were in danger of being put in the naughty corner! The freebies were great and im using them all now. Good luck with it and have fun.
Everyone sounds ok today…Im just chillin as they say. Hope to get out for a walk in a bit.
xx carmel
Hi Carmel
Back from a fantastic afternoon out. We were greeted with Bucks Fizz and chocolate biscuits and then on to a thoroughly enjoyable session of makeup tuition. We had a break halfway through and were once again treated to mince pies, chocolate logs, tea and coffee. I couldn’t have enjoyed myself more. It was great meeting up with a roomful of ladies who were all at different stages of treatment. We all had a great time. I will definitely recommend this course to anyone who hasn’t been yet. The freebies are fantastic and I won’t have an excuse for looking badly made up on Friday now.
Jackie xx
Glad some of you are making it to work do’s - mine is on Fri the day after epi 4. I haven’t seen some of my teaching colleagues since diagnosis at beg of Sept & I must admit even if I’m up to it, I’m not sure I’m feeling brave enough to cope with “that look” !
So glad you had such a good afternoon Jackie - sounds just what I need at the mo. Which one did you go to - I think Guildford is nearest for me. Will def try to book it after Christmas.
xx
Hi,
Carol if it is any consolation, I looked ok on epi and everyone was very complimentary, they expect the hair to go. But on cmf, the double dose of steroids gave me the ‘steroid fat, flat face’ ehich built up. I felt so much better but everyone thought I looked like I was struggling. Spent most of my time convincing people I was ok. On epi I looked ok and felt a wreck. You can’t win some days.
Well I had my first rads treatment today and was in and out in 10 minutes, very efficient and lovely ladies there. You just lie there for a very short time. My only problem was when they ran out the room and the warning siren went off, I jumped out my skin just as I was supposed to be very still. Will try to be ready for it tomorrow. It goes off twice with my treatment and both times I nearly jumped off the table. What a breeze that was compared to chemo, just hope it stays that way. Putting lots of cream on in advance of sore bits.
Jackie I went on that and they are so great. I am still using all the dior, channel and clinique products I got. What a great thing for someone to organise, wish I could go again! The one I went to was like a Dr. Who programme, every time I looked up someone else was bald and had thrown their wig, scarf or hat on the table. I hadn’t realised I was the only one with any hair left, as I went right at the start and had used the cold cap. They were all so nice and we did have fun as I had real tarty bright red lipstick in my bag. I looked like a vampire in it.
Hope you all get on ok this week
Lily x
Hi
My LGFB course was in Sheffield. I actually booked it at the beginning of October, but it is so popular that I was told it could be Jan or Feb before my name came to the top of the list. Luckily they had a cancellation yesterday and because I’m not working at the moment I was able to go. It was a very good early Xmas present.
Glad your 1st rads went ok Lily, hope it continues.
Jackie xx
Hi everyone, I’m Hickmanless and feeling good, just a little sore. The worst bit was the local anaethetic again - stings like mad. It’s lovely to hear about all the activities you seem to be able to go to. I don’t think there are LGFB courses here in the Potteries … but I’ve heard other ladies saying how good they are. I spent a fortune on kohl pencils when I had no eyelashes and eyebrows. My hair is back everywhere except underarms now, and I’m told my new v short hairstyle looks good on me. As it gets longer I expect it to look really tufty as I have so many crowns. Glad the rads are bearable Lily. I have an app in Jan for the set up. Hope all feeling well today. S x
Hi,
you know the chemo suddenly rushes by at the end and I can’t believe how quickly i have switched off from it. Rads planning is fine, just lying on a table with people looking at your boob or whatever you have now and drawing on you with a felt pen. I had a CT scan (no injections at all) and x rays, all done while on the same table/bed. It is quite a long time with your arm behind you in a sort of support, so if not fully mobile take my advice and start exercising now as that is the only bit that might be uncomfy. Then 2 weeny tattoos, as chest only and sent out with a sheet full of appointments. I do feel a bit like a piece of meat on the block sometimes when they are checking all their angles and ignoring me though. Then the warning siren goes off and everyone runs out and then the big loud blast while the machine works for about 25 seconds or so. Then they trot in, move the machine, run off and desert me again andthen sirens and blasts again. From walking in to walking out is just under 10 minutesso far. Then the drive home again. The only bother is if you have a bad journey to get to a scanner. Look forward to being on the next bit, it is coming your way faster than you can imagine right now. Keep smiling everyone and have a good week if you can. If not hope you feel much better soon
Lily x
Oh dear a couple of rough days for me have set me back… I def spoke too soon. Its wierd because i was feeling so normal. Iv started taking my anti sickness meds again to see if i can improve how im feeling. Just hoping for a better day tomorrow because i was so looking forward to getting on with a few things. Watched last nights desperate housewives on replay today which was most entertaining… OH seeing to kids as Im not really up to it. Good to hear your news
xx Carmel
I’m following you Carmel - epi no. 4 today - and don’t feel great. Lily - thanks for the words of encouragement!! Hoping, but doubt I’ll make my work do tomorrow. This must feel worse as it’s Christmas…?? Took a fab friend with me to chemo today - she made me laugh when I was being stabbed - made it all much easier.
Good luck ladies
xx