I couldn't believe what I was reading about your experiences with the medics Ocean21, good for you for putting in a complaint. It sounds as though you should definitely have a chaperone with you next time. Is that possible? And how did you manage to sneak through the Charlie Hebdo thing when Implausible could not use bond age? Let's see if that'll get through.
Love the poppies Nettienoo. There seem to be loads around this year. Maybe because so many were planted to mark the end of WW1 last year. We put British Legion seeds in which didn't materialise last year but have popped up this year. Maybe it was too dry so they they didn't germinate.
Seaside Sar, brilliant duck photo obviously enjoying the rain more than us☹☔🌧🌧
Marlyn you really are going through the mill at the moment. As you say why didn't they warn you about using moisturiser. In my information leaflet it tells you to moisturise daily after ANC, but doesn't tell you to stop if having radiotherapy. Hope things improve for you soon❤.
Implausible as for PICC lines, and it seems ports too, the nurse yestday couldn't believe it wasn't used for my surgery. I thought that was one of the reasons my onc wouldn't let me have it out between chemo sessions. Infact the only people that have used it are the BC Nurses for bloods and chemo. I did mention the PICC to one of the aneathatists but he just muttered something about infections or something. So I have one fading bruise on my right hand☹. Like you too I spoke too soon and had a 💩 night last night. Awake from around 2:30 on and off until alarm went off at 6:00. Another excuse to take it easy again today so I am ignoring the fact that my house looks like an army clearing station. Several wet pairs of jeans, washed for a second time, draped over one banister, sleeping bag draped over lower rail, holdall hanging on washing line, wet weather jacket drying in bathroom and tent drying in garage. This'll be the scene again in a couple of weeks as Chris is off to Begium next week for another festival. And he actually ironed stuff last night. I was almost tempted to take a photo😀📷.
Anyway must go now, tummy wants food. Hope this weather improves, we could all do with some 🌞🌞🌞.
.I also underestimated how exhausted I would be, it kicked in properly last week, I really do feel like the walking dead .....I'm afraid there will be no partying for me when this stage is done.....it's all slippers sofas and sleep ( fingers crossed) for me post rads.......xxx
Marlyn - in your honest opinion, do you think I will be able to work in the afternoons throughout my rads? My oncologist said it should be fine, but the radiologist who took me through everything at my planning scan yesterday said she thinks it will be very difficult. In fact she looked at me like I'm a crazy person!
I'll be leaving the house every day at 8am for a 9.30am zapping, and should be home before noon, they assure me. Then my plan was to work 4.5 hours each afternoon as that will make up my 3 full days' equivalent over Mon-Fri.
Am I kidding myself???
Also, I'm supposed to be straight back into the office full days Tues-Thurs the week after rads.... but they say that is the worst week, don't they?
I'm beginning to worry I might have over promised! But the buggers won't pay me if I don't work so I feel I have to at least try it:/
They have certainly put you through the hoops. I hope you get some rest time very soon 💕💕💕
More delays at rads today, so my last 2 will be done tomorrow..10.30am and then again at 4.30pm......almost 5 weeks in total....I do wish I had been warned about the moisturiser before rads! I could have saved myself so much pain......I also underestimated how exhausted I would be, it kicked in properly last week, I really do feel like the walking dead .....I'm afraid there will be no partying for me when this stage is done.....it's all slippers sofas and sleep ( fingers crossed) for me post rads.......xxx
I've been lurking for the last few days, but not had a lot to say.
I've bitten the bullet and joined weight watchers this week, that wasn't pleasant
standing on the scales, but hey it should only get better from here.
I still get frustrated that I'm still so out of breath climbing stairs or walking, does not help,
thats I live in a split level house.
Implausible that makes sense about the dye, as I had bad heart burn the days I had lots of tests in hospital.
I hope it passes quickly. Its good you have the option to work from home when you are not feeling up to it.
I love that you got censored but got around it, lol.
Trixie, It sound like you have the same thoughts as me through the night, I often wake and think I could do this, this or that
then i get up and walk down stairs and need to rest, and game over. Hopefully my body will catch up with my mind
Edinbird, hope you are feeling better and that ear is clearing up.
SeasideSar, It's good that your job is secure for the moment. It gives you breathing time. My children's old primary
school is an academy, but it is all kicking off as the TA from the 5 schools in the academy are getting paid less than
the other primary schools in the area. the duck pictures are lovely.
Rosina, thanks for the tips on the books, I shall take a look.
Ocean, Good for you for standing up for yourself with the awful radiologist. I had 2 ladies who were lovely
and explained what was happening and if they went silent they were just concentrating on measurements, to be
honest after the 2 full days of test, I didn't really take a lot of notice, but i was given a gown to walk across the
room in. I hope you get a better experience next time round.
Netti, thanks for sharing your past experience with this horrid BC. I had also had patches of DCIS , with that and the
lump being so big they opted from mastectomy. Like Sarah said not that we wish this on anyone but I am glad we
have got to chat to you, I love the pictures of your fun time, good news on the tickets. xx
Daisydi, hope you've managed to get more sleep, I'm the same as you window open window closed, i don't think it
matters as I wake to go to the toilet or am uncomfortable or who knows just wake for the hell of it !!!!!!
Deano, how are you doing ?
Marilyn, you've probably said but how many radio's have you got to go? bet you will be partying after that.
Susie, it sounds like you are recovering well. I am glad to hear your son managed to get his clothes to the washing
machine, It's hit or miss in this house, sometimes it get to the machine, other times it doesn't get off the floor to the wash basket.
I dropped my daughter to her placement this morning and popped into the shops only to be nearly drowned by the rain
I haven't seen it that bad in a long time. sitting here waiting for the sun the break through before I walk the dog,
as I walk so slowly I don't want to get too wet.
Well, after saying how good I am at sleeping, karma kicked me in the nuts last night. Every time I laid flat I got horrid acid reflux. Don't know if it is connected to the contrast dye they injected into me yesterday for the CT scan, as I did get a bit of the same sensation as the dye went in, and they did say it will take a day or two until it is flushed out of my system. But whatever caused it, I had to try sleeping sitting up which was about as successful as you'd expect.
Have used it as an excuse to work from home today rather than head into the office. but to be honest I feel the same amount of exhausted this morning as I do when I sleep for 11 hours, so it doesn't seem to make any difference whether I sleep or not! Oh to be back to anything remotely approaching normal!
Seaside - cute ducks! And good luck with the consultation stuff at your job. Have been through it a few times. Never fun! I've always been lucky and been one of the ones kept on but it is still horrid to see colleagues not be so lucky and I have had my team cut down a few times and had to say goodbye to good people one time they wanted me to cut my team from 3 employees down to 2. The 2 that got selected through the process had both started looking for other jobs in case they didn't get through. They got the other jobs and resigned. And then the one guy who hadn't been selected, sulked at that fact and walked out rather than take the "sloppy seconds" job as he so eloquently put it. So I ended up with no staff at all and had to recruit!! What a mess.
And Rosina I'm glad you have found a hiking buddy! Have fun
Oh the whole censor thing made me laugh!
Sarah, that's a heck of a long way for you to have to travel for rads every day. It's good they're arranging transport but still, it makes it such a long day. I'm feeling very lucky that mine is just 10 minutes up the road at a private hospital. Am kind of dreading the planning scan now in case I have to assume a certain position which you mentioned 😂🤣 Will be giggling on the bed with them wondering if I've lost the plot.
As for the work thing, the 30 day consultation started yesterday. When I find out what it means for me is anyone's guess. They have to keep us on our current terms and conditions for a year so there is some breathing space at least.
Ocean, what an awful experience with your radiologist. How grim! Good for you for complaining.
Rosina, fair analysis of 'When breath becomes air'. I will look up 'Do no harm' although I have a pile of books to get through. My daughter studies English Literature and has passed several 'must read' books my way.
Went for a long walk around the lake yesterday (in the rain) but it was kind of nice hiding my unmade up face under my umbrella. Saw loads of ducks and geese.
Hope you all have a good day.
Good one Nettinoo,
your most recent comment has made me chuckle 😂
Love the photos Ocean21, keep them coming.
Good for you for writing a letter of complaint re. the rude radiologist. a Trixielady and Seasidesar I too have read ‘When Breath Becomes Air’ ( good title) . I read it because I heard the surgeon’ s wife being interviewed on Women’s Hour. I thought she was mad/brave to have a child with a man knowing that he had months to live. They had decided to freeze his sperm when he was alive so I guess it was up to them. Nevertheless, I still think it’s selfish as his daughter doesn’t grow up ever knowing her dad. Also not sure about a dying man cuddling his baby girl until he passes away. I guess the book sales would help cover medical fees ( it’s the US after all) and his daughter gets a memoir to read in her teens.
I much preferred ‘Do No Harm’ by Henry Marsh who is also a brain surgeon .
Implausible , lucky woman with a chauffeur. Enjoy it.
I have walked again today, so no complaints.
More walking planned for tomorrow and Saturday I am meeting up with a fellow hiker ( we met via the FB Mighty Hike group) to hike from Lewes train station to Virginia Wolf’s home called ‘Monk House’.
Good night to all, especially those who have trouble sleeping.
Come to think of it the flowers from the Lime (Linden) tree make a lovely herbal tea that my Greek Gran said aided sleep ( it smells lovely). Greek Gran knew her plants and her mushrooms. She was also a dab hand at tying them up ( 😂) so they grew as she wanted especially the grape vines and the climbing roses.
PS Ocean21 was that violinist Lindsey
Stirling ? She is fabulous:
So.... a proper catch up, for the first time in days.... soz, been a busy bee!
Rosina, I'm glad you enjoyed your LGFB session, I know you were mainly going to get the freebies for your daughter and weren't really looking forward to it hugely. But hopefully you had more fun than you were expecting to.
Make up wise I don't wear it for everyday , or even to work. I'm far too lazy! I only really wear make up if going somewhere special, or if there is any chance I'm going to have my photo taken
But I still appreciated the tips at the workshop, and the free stuff!
Also, Rosina, you mentioned WOMAD. My big sister (yes, that one ) has been going every year since it started and is now on the committee that runs it. She loves it (obviously!) and with your interest in world music I think you really would to. It is quite the experience and very different from any other music festival. It is also just down the road from me so if you do go, wave at Swindon as you drive past
Do we know when MBJ is back from her cruise? Was it a one weeker or longer? I hope she is having the best time!
Edinbird, I used to play the violin too! Not that I was ever very good at it. I used to practice for hours for my exams and my dad would eventually snap and yell "stop that infernal noise!!!!"
Susie, glad you are continuing to recover well, hope the picc care went well today. Talking of central lines.... I was rather hoping they could use my port today to inject the contrast dye for the CT scan, seeing as I still have it. But no over an hour it took them to get a cannula into me today. Ouch.
Marlyn is bleeding boob still bleeding? how many rads have you got left now? When the nurse was giving me my chat today she did say not to moisturise immediately before being zapped. I presume to avoid the "basting" effect. I wish you had been given the same advice!! As my appts are all early in the morning she has said I should moisturise twice a day, once when I get home after hospital and again at night just before bed.
Trixielady et al I'm glad to hear that it isn't only my sons who only make themselves useful when they want something!!
Nettie I am so sorry you have had to go through all this worry and palaver twice it really isn't fair, that should have been your bit done and dusted 5 years ago
Then we wouldn't have had the pleasure of meeting you, of course! But as we said right back at the start , this is the club we would all rather have not have joined! No matter how friendly it may be
Rosina (again), yay for the return of the tastebuds!!
Seaside sorry you've had a stressful day with all the TUPE stuff kicking off. Is it a long process? When do you find out where you stand?
Glad to hear Lexi is doing so well
Ocean, I'm also much thirstier at night than I used to be. I take a pint of water up with me and have always finished it by the morning. I think it is definitely a chemo thing. I am now in week 3 of my last cycle so I'll let you know if it goes away over the coming weeks .
And yes your fingernails sound just like mine, they hurt like they have been trapped in a door! And yes as you say it makes it difficult to open food tubs and pull on socks etc.... I also have none of the other (visual) symptoms you described, they look perfectly healthy to the eye, they just hurt. I do think that they are starting to feel a little better, however. Hopefully that means they aren't going to suddenly fall off, which has been my fear for the last week or so since they started to hurt....
I really hope that they take your complaint against the insensitive radiologist seriously. Hopefully whoever they assign you to next will be a little more respectful!
And yes, Nettie, that made me laugh too I guess there is a naughty word filter on here but no naughty picture filter
I think that's me caught up
Love to all
Hahaha! Censors not happy with your “b” word Implausible but ok with a full on fanjita!!!! I’m in bits here! 😂🤣😂🤣
I need to find the time to do a proper post, but blimey Ocean! That Charlie Hebdo cover really goes there!!!
Yeah I can't see Private Eye, which is the closest we have to Charlie Hebdo, getting away with that somehow!
As for sitting around topless for ages while various medical staff both male and female mill about, it was my turn for that today as I had my rads planning session and had to have a CT scan all boobs out....
Luckily all the staff in the room had introduced themselves to me prior to having to strip off, and they were all perfectly pleasant, and did explain all the things they were doing, etc, (unlike your nasty chap!!) which minimised the awkwardness a little. But it does still feel rather odd to be laid out like a side of beef like that!
I figure they all see boobs day in day out, though, so to them it is no big deal....
There was one bit when the male attendant wanted to secure the cannula better in the back of my hand - and my arms were behind my head with my fingers interlinked, so he basically taped around all my fingers sticking my hands together.... when I **almost** made a quip about it reminding me of my last **bleep** party, but I thought better of it!!!!
(I haven't actually ever been to a **bleep** party!!! Before you lot get the wrong idea. I just think I'm funny! )
Oh and Trixielady, yes I'll be going to Oxford and back every day in July (4 weeks of rads). It is a pain as it is a good 2 hour round trip, more in traffic (and my appts are at 9.30am each day so the outbound journey will definitely hit the rush hour). But thankfully I don't have to drive it myself, as they are going to send a car to get me every day, apparently! All part of the service. Fancy!
I could have been collected today, apparently. Didnt know that, so I drove myself today.
Loving all the poppy pics. I drove past a massive field FILLED with poppies today. Like in the Wizard of Oz! It was beautiful. No photos I'm afraid as I was on the dual carriageway and there was nowhere to pull over
I'm going to go and read back properly now and reply to anything I've missed
Thanks so much for the poppies Nettie, they’re lovely.There’s something about the sight of masses of field poppies that’s so uplifting. We’ve leftsome wild areas in the garden and photos I posted earlier were ones that have seeded themselves in one of the wild patches. I recognise that we’re very lucky to have the space to leaves ares like that so I don’t take it for granted. I must say it’s been a revelation in terms of the things in terms of wildlife if that’s the right term.
As I was getting close to take the poppy photos all these butterflies suddenly flew out of the patch. In an area of trees by the river, the grass hasn’t been cut and about 2-3 months ago it was full of really tall buttercup like flowers. Dragonflies seemed to love them which is fantastic for me . I can happily spend ages taking photos of dragonflies, I love the colours of them. Quite magical.
We’ve got borage that has seeded itself here and there. Bees absolutely love it. The village church which is about 800 yrs old is right next to our garden. At the church garden backs onto ours. The garden has about 4 big lime trees which sound as though they’re alive there are so many bees humming and buzzing in them .They’re only just in flower so as the days progress the buzzing and humming will get louder.
Thanks also for the support over that horrible radiologist. I don’t know why they do it here but they demand yo7 strip to the waist and just sit there , they don’t offer you anything to cover yourself . No dignity at all. There are some men and no doubt women who really get some voyeuristic pleasure in seeing like this. Happened to me when I had to have my heart check for chemo. Male nurse told me to strip to the waist but he didn’t leave th3 room , he suddenly found he ha£ to re-do tissue paper that covers the examination table. It had clearly already been done . I removed my clothes but I left my bra on and kept my t- shirt across my chest. Intuitively I knew something wasn’t right. He told me I had to take my bra off and there was jus5 something about the way he was looking that told me I was right to keep myself covered. As Tim was there( but as usual typing on his bloomin’ iPhone) , I kept hold of the t- shirt of me and just lowered my bra straps. He stood there for what seemed an eternity jus5 looking. So I asked him if there was a problem. That seemed to jolt him a bit, he blushed and left the room. Pervert.
I was covered up on Monday when I saw that vile radiologist. At one point I was lef5 for ages wit( my hands above my head having been told not to move with more people kept walking into the room . I didn’t know who these people where or why they were in the room . Turned out only the two nurses measuring up and horrible radiologist needed to be there and that was bad enough .
The level of sexism here is gasp worthy. Going to see if I can post a link for the Charlie Hebdo front cover marking the start of the Women’s World Cup. It’s vile but I can’t tell you how many people commenting on social media have said ‘ it’s a joke, I think it hysterical, get over it’..
It says ‘ we’re going to be munching on this for a month’.
Nettienoo thanks and your right,I think we all can be a little to blasé at times and then when something bad happens we tend to be more extreme. I seem to be worrying far to much about everyone at the moment but i suppose its better than not caring xx
Will post properly later as suddenly feeling a lot better today and trying got get stuff done while it lasts. Just needed to say Ocean21 I am so so proud of you standing up to that complete sh*t of a radiologist. I can’t believe how rude and obnoxious he was. Not even introducing himself before attacking your boob. It’s really hard to stand up for yourself when you are feeling a bit broken by the chemo so well done darling. The following pic was taken this afternoon in the public allotments at the back of my house. I saw these and thought of you.....
Marlyn, how long have you got left on the rads? Xx
Lots going on with everyone.
Rosina , sorry to hear that your last chemo has been delayed until next week. My last Taxol is next Tuesday so it looks like we’ll both finish the same week
Edinbird,Marlyn and Trixielady ,Sorry to hear about your sleep problems. I sleep quite well the only thing that can upset my rhythm is having to get up to go to the loo. I’m in a catch 22 with that because I can sometimes get really ,really thirsty so I glug down water , then I pay the price with trips to the loo during the night. If I don’t drink when I’m thirsty, I’m awake thinking about being thirsty ! Don’t know if it’s chemo that’s brought on this increased night thirst thing , I’ll see whether it diminishes after chemo stops.
Implausible , my finger tips also feel like they’ve been hammered. They’re not swollen or anything just the nail beds are super sensitive. About a month ago I started getting these darks shadows on a couple of nails . I’ve now got a shadow half way up 9 nails but the all hurt. The oncologist says that they know that this sometimes happens with Taxol but normally the people who complain of it have swelling around the fingertips ,changes in the nail itself and sometimes even a discharge from underneath the nail. I’ve experienced none of that thank goodness . She lowered my Taxol dose to see if it helped but it hasn’t. Seasidesar, like you with your nose hairs, I never imagined just how much lipainful nail beds can hamper your daily life. Opening things , getting tablets out of blister packs, getting dressed, putting on shoes .. the list is endless.
As to how many radiotherapy treatments are standard , from the sounds of things there isn’t one!
Over here under the regime I’ve been having you have radiotherapy for 6 weeks.No idea whether that standard is based on age, bc type and grade or what.
Ive made a formal complaint about the radiologist I’ve been assigned to .A more vile, insensitive professional you couldn’t hope to meet. Twice he’s seen me and twice he’s been foul. Monday when I went for the measurements and tattoo dots ,he walked into the room one of the nurses handed him a pen and he just started drawing around my boob, talked over me about department business to one of the nurses, handed his nurse servant back the pen and walked out. He didn’t tell me what he was doing , why he was doing it .Yet again he didn’t tell me who he is. I felt totally humiliated.
I was so so disgusted I wrote a complaint to his bosses and my oncology consultant who coordinates all treatments. I don’t think people are used to patients complaining here. Sent the letter in th3 early hours of yesterday morning but the time I saw the senior doctor at 10 just before having my Taxol, I think the whole department knew about me just based on their nervousness around me!
Even the doctor i saw said she’d read what sent in. I told he4 that I refuse to see the radiologist I’ve had to see ,they’ll have to find me someone . She understood and said I’d made my points about th3 treatment I had from him very clear. My consultant works at another hospital on a Tuesday so the doctor I saw had already made sure my email had been immediately passed on to her inbox so she’d see it today.Dont know what the upshot will be but I’m not go8ng to let him get away with treating any other female patient like that.
Anyway, onto nicer thoughts. Music. I hav3 varied tastes. Was really into salsa dancing at one point so hard driving Cuban salsa will always get me shaking a tail feather or two. Love Chaka Khan when she was with a band called Rufus. Nina Simone, Mahalia Jackson , Tania Maria. There’s a woman who plays hip hop violin and whose name escapes me right now, who I really like. Love Marvin Gaye in his early solo days. Gill Scott Heron, Daara J. Van Morrison. List is endless
My kid# also keep me in the loop. Also I discovered a channel for up and coming artists on YouTube called Colors. Lots of good stuff on there. Trying to post a couple of links of my favs on there but don’t seem to be able to. Will try in a separate post. Think you’ll really like them Nettie.
More pics for you.
Just caught up on all the chat. I've had a stressful day so far as the TUPE process gets underway today for my school to be taken over by the academy chain. There's not really anything I can do but I just want to make sure I don't miss anything.
Lovely to hear from you, Trixielady. Good old Trixie keeping you sitting down. My cat does that to me as well. I have read the Paul Kalanithi book too. Let me know what you think. Lexi is fine now, thank you for asking. She is getting bigger and smiling a lot, although also crying and sleeping her way through most days.
Daisy, I hope you've got a bit more energy today. Such a pain feeling so tired all the time. As for temperature control...it is a constant struggle for me as well. I'm constantly changing outfits as I'm too hot, too cold.
Glad you enjoyed LGFB, Rosina. The eyebrow pencil (if it's the same one I've got) is really good. I use it every day. As for enjoying silence as you get older, I also think that goes hand in hand with working in a school. I've craved silence ever since I started teaching 😂
Sarah, that was one heck of an awful Facebook memory! Loving the festival pics and the very young Sarah. Good luck with the scan today. Mine is on Monday so hopefully they will tell me the start date. My work have been asking when I might return and I'm finding it hard to answer that until I have the radiotherapy dates confirmed.
Sleeplessness is a definite problem. I too have tried the eye mask and I'm with you, Edinbird. It just made me more sweaty so I ended up chucking it on the floor.
Susie, good to hear you're feeling more with it today. Definitely sounds like your son was trying to soften the request for his mates to sleep over! Let's hope they behave themselves.
Nettienoo, I'm sorry FEC has been so awful again for you. These side effects definitely don't get any easier to tolerate. I'm really happy to hear about your theatre voucher though. Something nice to look forward to and a drinky thrown in 🍸 Love the music chat and the thought of you dancing around to Bonkers - That's brilliant 😊 My taste in music is equally diverse. I'll list some of my faves but I'm bound to miss some. Here goes...I love Bastille, Red Hot Chili Peppers, Green Day, Phil Collins, Ed Sheeran, Robbie Williams, 80s music, Jazz piano, 1930s and 40s music like Billie Holiday and Glenn Miller, Queen, The Beach Boys, Michael Jackson, George Michael, Zero 7, Jess Glynne, The Foo Fighters, Calvin Harris, Emeli Sande, Mario and other R&B stuff. My kids laugh at me because they never know what to expect!
Marlyn, it does sound like you have been through the mill with these barry rads. Bet you can't wait for it to finish. You've been amazing girl!
Hope I haven't missed anyone's posts from the last 24 hours.
Loads of love
My taste buds are officially back.
Coffee was delicious this morning and I made the red pepper soup again and it’s delicious. Mind you I upped the smokey paprika to 3 tsp instead of the 1 🤗
Hope the drive to Oxford went ok and the planning of your rads?? Will you have to drive backwards and forwards to Oxford for them how many and for how long?
By it looks like you've had a lot of fun over the years attending festivals full of energy your also very talented xx
Trixielady, I’ve popped back in to explain further and hopefully stop you worrying. I was diagnosed with DCIS (Ductal Carcinoma in Situ) 5 years ago which is classed as a pre cancer and needs to be removed to stop it progressing. I had three separate dots of it so had a lumpectomy about the size of a golf ball. The Onco said margins were clear, no need for any further treatment. No chemo, no rads and all should be fine. A year later, I had a bit of a reconstruction to put a small implant in where lump had been taken. I carried on having yearly mammograms and it was number 5 of 5 last October that showed changes in the same breast as before. This obviously led to the full mastectomy on that side, reconstruction and chemo. It has since transpired that only 1 in 10 of people who have been treated for DCIS go on to develop a tumour which is, I suppose why they don’t offer rads unless really necessary. If I’d had rads back then, maybe I wouldn’t have had all this now. Who knows? It just wasn’t an option anyway.
The recent tumour was E+ so will have to be on appropriate after treatment for 5/10 yrs. can’t remember what.
My current situation is that as my lymph nodes were clear and I have no breast tissue left that side, I only need chemo this time and still no rads. I’d happily have them though as I want them to throw everything they can at me this time. It is a worry that I have been unable to have the ideal 3FEC followed by 3T and am having 6FEC instead (if I can finish). The Onco says it won’t make much difference but I’ve been lulled into a false sense of security before. 🤔 .
All in all I still feel I’ll be able to move on eventually but the yearly mammograms will be a bit more nerve wracking now. I was so blasé about them before.
Im loving reading about everyone’s taste in music. It’s really giving an extra dimension to you all. Thank you. I will comment further on this another time. Xxxp
Marlyn have you joined the Facebook page for HER2 positive?? there's some talk on there about people experience of herceptin if you haven't it might be worth a read xx
Its lovely when they help without us having to ask, before my son moved out it was and still is usually when he's wanting or going to ask me to do something. I also certainly like your varied taste in music similar probably to my own.xx
yes....all 3 without chemo.....my nurse told me in all her nursing career she had never come across adverse side effects with herceptin, the only thing I do experience is the uber dry mouth.....
rads all done done for today, got a different cream for bleeding boob, and he warned me it all may well get worse in the next two weeks !! Oh great....... xxxx
Blimey what a mix of topics again, sleep or lack of, music, music festivals, side effects to name but a few.
I'm a bit more with it this morning so will continue to take it easy. Could get used to it. My son actually loaded the dishwasher after our meal last night. Might get him domesticated yet😃. It might just have been to soften us up as he is off to another festival in Belgium next week and last night asked if his 2 mates could stop over Tuesday night so they would be all ready to set off together at 3:00am for an early morning flight from Heathrow. They'd better be quiet!
On the music front I have quite a varied taste. When it comes to groups or individual artists I will only buy their CD if I like it, not because it's by them. So I like Ministry of Sound/Ibiza stuff, Mike Oldfield, Pink Floyd, Queen - saw We Will Rock You in the West End in 2011, Take That, Adele, Phil Collins, Genisis, Tokio Myers and my guilty pleasure Micheal Buble. There's loads more but I'd be here all day and I've got PICC care, again, this afternoon. Hubby is taking me in.
On the sleep front I found things started to get back to normal, or near normal around 4 weeks after chemo stopped, following our trip to France. Maybe the break away halted the cycle of sleeplessness. I sleep through from around 11:30/midnight until hubby's alarm goes off at 6:00. The difference now is that I awake and stay awake then instead of nodding off again. I was prescribed sleeping tablets when diagnosed with this Barrying bc but only took them for a few days as I didn't fancy the idea of being on them for months on end.
Love all the happy festival photos, happier times even in the rain🌦🌧🌧.
Must love you and leave you for now as I need to refill the bird feeders and have an early lunch.
Have the best day you can. I know some of you aren't having the best of times at present. It will pass. It HAS to, please. xxxxxxxx
PS Nettie that's brilliant news about the opera refund!!!
PPS I quite like Flo and her Machine. Sorry. I'll show myself out
I hadn't realised that you've already been through the wars with this blasting thing did you need chemo last time?? xxx god my mind is working overtime now i do hope your ok is this now classed as a secondary or reacurrance so sorry but I had to ask xx
I'm feeling kind of guilty as I have the opposite problem to everyone else..... all I DO is sleep!!!
For example yesterday I got in from work at quarter to 7, was in bed by 7 (I didn't even eat as had no energy to stand and cook), and was asleep by 8. Woke briefly at 4am ish but went back to sleep and was woken by my alarm at 8am.
So i am hardly sleep deprived, but it isn't helping in the slightest as I'm still exhausted all day and i get nothing done in the house on a work day as I'm literally either at work or asleep. No me time at all. Bleuurrghhh.
I have to keep reminding myself that I am only a couple of weeks out from my last chemo, and of course they are cumulative in strength and effect as you have been discussing. So I can't expect to have all my strength and energy back just yet. But this level of fatigue is really getting me down
Not looking forward to the drive to Oxford and back in a bit (got my rads planning appt at 1pm with the CT scan and stuff). And that's unusual for me as usually I love driving.
OK onto happier things.... music and festivals.
Festival piccies below, including my first ever music festival in 1983 so young! So innocent!
And as for music.... my music taste development went kind of 2-Tone to prog rock to thrash metal to punk rock/US hardcore to grunge to nu-metal and then kind of got stuck there in the 90s
My favourite bands are System of a Down, Pearl Jam, Alice in Chains, Faith No More, Korn, Metallica, Slipknot, Black Flag, Fugazi, bit of Red Hot Chilis from time to time.....
Right.... I have 9 minutes in which I can still eat something before the cut off for my scan, to the cupboard!!!!
Love to all
Its awful hun just when you need your sleep to cope with this blastered illness it takes it from us unfortunately I've got no suggestions otherwise I'd be able to sleep, I lay awake or creep into our spare room end up thinking if only i was well enough this would be a lovely time to do the ironing, take trixie out and so on but then reality hits again tell me you've got not barry energy in my head i also want to go back to work but that isn't gonna happen either at least for awhile, if been going down stairs and watching telly and having a cuppa but I'm sure Trixie is thinking what are you playing at messing my sleep pattern up mam in the dead of night i let her into the garden then cringe when she barks I'll be getting wrong soon from the neighbours xx Just had a thought can we use nightall?? or something from the herbal shops?? Xx
Well done you for getting up at 8, you poor darling, i tired a sleeping mask but unfortunately it was everywhere but on my eye's xx I never used to have time to listen to the radio with always being at work but find myself putting it on through Google trying to find happy songs, I like a wide range of music as long as its lively and happy xx
Sorry number 5 is being awful to you its horrible that they get cumulative but you've managed really well to get this far considering how you have been from the start so a very big cuddle and a well done come on you can beat what ever it chucks out xx thinking about you
Photos are lovely, its lovely to see happier times xx
I've started to print off mine with Free Prints, where you only pay for postage, starting putting them in frames and putting them up in the spare room or should have said Stephen is doing it for me xx
Its raining here but yesterday was lovely xx
Is that your 3rd without chemo?? I've had 4 but this week is my first without chemo and when i look back I wounder if that is where my diarrhoea actually came from when it was explosive it was around the second herceptin injection, legs feel really heavy today and the occasional joint and muscle pains also eyes hurt the other night xx
ref the herceptin, I'm really hoping your going to be fine as I'm about to have my 3 rd injection next Thursday and don't feel any different whatsoever and believe me....I almost go looking for side effects! I'll be starting anastrozole next week....eek!!!
Off for my rads......xxxx
Its just gone 8 I have forced myself out of bed! Ok this doesn’t count as work but I will put the laptop on next! Same old sleep really... I bought a sleep mask after my night on the ward so I tried it. I had to have it on quite tight and pulled down to block everything out. Still got hot and at one point woke and the mask was all caught in my hair and squishing my ears so I ditched it. I also wonder if I would have had dents in my face from it? Might try it again on less tight but that seemed to be the only way to actually shut out the world. At least I tried. I feel tired and woozy but a cup of tea will sort me out.
Music as you asked Nettie... I haven’t listened to the radio since February so I can’t say I’ve any idea about anything new!! I like ELO as we know... Mac Miller is mine and my bestie’s favourite we always sing and rap in the car. I like Motown, I was a teenager in the 90s so liked all the Britpop and Indie stuff, but also like older stuff like Roxy Music, Blondie, Beach Boys, all sorts! I was a journalist on the radio for six years early 2000s so the indie stuff then my friend and I who used to present together would just put on the playlist and play regardless!! But there are equally some things from that era that will grate if I hear them because they were played so much. Bad Day by Daniel Powter might make me want to punch someone!! I’ve been to see Train four times, I’d still say along with ELO my favourite band however I wouldn’t go and see them again, I like their new stuff less and less and much prefer their older albums. My husband loves dance music and we have been to Creamfields! And I used to play the violin at school so whilst I’m not into classical music if I hear something I’ve played I will enjoy it.
There - that’s kinda everything right?! 😂
Morning Nettinoo ( hi Trixielady good to hear from you too ) 🤗
Re. Music :
Folk, Country and Western, World Music, New Age, Ballet Music and stuff from the Musicals.
I love Adele’s voice. A good voice always catches my attention: Nina Simone, Tina Turner ( I saw Tina Turner the musical 👍) Edith Piaf.
I saw ‘An American In Paris’ and loved it. The sets, the dancing, the music. This is why I like Matthew Bourne ‘s creations.
I fancy going to a Womad ( World Music Festival) but so far haven’t managed to do so.
I also - as I get older- love silence 🤪
Ps Trixie go and get on mummy’s lap so she gets some rest today and doesn’t overdo things by cleaning the other half of that conservatory. 😘
pps my posts are like buses. You don’t see one for a while, then 3 turn up together. 😂😂😂
Hi lovelies, sorry I’ve been a bit quiet. First week after FEC no. 5 has been really tough (the side effects def seem to get stronger the more you have). The Onco did say that because I react so badly to the FEC toxins, I may have been less ill on the T but she wasn’t willing to risk it and neither was I.
I am starting to feel much better now so hopefully will have some more normal days before inevitable infection kicks in. 🙄.
I’m with you all on the sleep thing. It’s just impossible to get a decent night and I have tried everything. Going on phone is last resort when I’m fed up with tossing and turning and once I’ve done that all is lost. I have a line of trees opposite the window of the spare room where I am currently trying to sleep. Even with window shut, the birds are sooooooo noisy. I normally love waking up to birdsong but do admit to shouting “will you just shut the bleep up” at them the other morning. Poor birdies.
I’ve also been dealing with the fallout of my son and his partner splitting this week. Since arriving home 7 days ago he has been out 3 times with mates and arrived home absolutely hammered. (The weeks he is on his survey ship are alcohol free so his poor liver must be thinking “what the Barry?”). I’m trying not to worry too much as it was his decision and having taken a van down to London to collect his stuff on Monday, he seems to be coping better thank goodness. Really could do without extra 💩. It seems to happen like that thought doesn’t it girls? There is never just bc to cope with. My problems are minute compared to some of yours.
Some happier news now, need to keep the balance right......I had to phone the Royal Opera House as won’t be able to use the really expensive tickets we have for Carmen on 20th July as part of my big birthday celebration a few weeks back. To cut a long story short after first being told they could only take tickets back for resale if performance sold out, playing the big c card 🙈(I know, shameful but first time and needs must), I was asked to email in to management. Within an hour they contacted me to say my current tickets were to be cancelled. They would refund the £400 on to a gift certificate with no expiry date and throw in champagne vouchers to boot. Result............. what lovely people. Now eyeing up La Traviata at Xmas or Madame Butterfly next year.
By the way, my husband thinks I have the weirdest, most diverse musical tastes ever. Opera is only one genre I have a passion for. I am really into Ministry of Sound/Ibiza type stuff. Have always been crazy for The Stones and Oasis. Love Artic Monkeys, Wombats. Kanye West!!!!!! To top it off choral music sends me into an almost transcendental state and the tune that makes me want to get up and dance immediately...Dizzie Rascal’s “Bonkers”. 😂😂😂😂. The one singing voice I can’t stand is Florence of Florence and the Machine. I’ve seen her live twice at festivals and I have the “nails down a chalk board” feeling. Is there anyone else out there like me? I would love to hear all your favourite tunes. We are all friends here. I would love to hear what music you like. No judgements will be made........well unless you like Florence’s work. Hahahaha! Sorry, not sorry.
Back to more serious stuff. Daisydi, I am so sorry you aren’t feeling well love. Is this just a little set back or are you constantly struggling to walk?
I can see so many worrying about ops. I had a lumpectomy 5 years ago, small implant and reconstruction 4 years ago. Various wires, dyes inserted. Dots tattooed. A mastectomy one side with full reconstruction, uplift other side and lymph nodes removed in November and I promise you all, apart from the odd drain issue and one wound taking a bit longer to heal it was all pretty plain sailing compared to chemo. Please try not to worry too much and if you are let the surgeon/anaesthetist know so you get loads of reassurance. I am hoping SusieB’s good experience will have helped. As far as buying special clothes, I always managed with what I had apart from soft bra purchases. Any top with a bit of room did. You will soon get used to manipulating them on and off your dodgy side.
Love you all. Sorry about the looooooonnnngg post. Sorry if I’ve sent anyone into snooze mode but perhaps that’s a good thing as we are all suffering from sleep deprivation.
ps I’m going to try and post a happy photo or two of me at a festival in the hope that one day soon those days will return. Xx
I dont get any sleep either and I am so tired. I cant sleep during the day or during daylight and I only manage a couple of hours before it gets light. Dont think Ive had more than a few hours sleep in the last week and I am really feeling it now. Can barely walk today either. Just wish I could have at least one decent sleep. Ive even tried an eye mask but that didnt help. Lots of birds round here getting up early. Hopefully the sweating should stop now Ive stopped taking steroids. If I shut the window Im too hot and Im too cold with it open. Will it ever end ?????
Good evening ladies
Rosina glad you had fun at the LGFG session. I really enjoyed mine but like Edinbird never seem to have the time to put it in on when going out plus i always feel false in makeup.
Implausible haha you've brought back some memories of when my son used to dump all his muddy washing and tent after Download its a shame it was never sunny though xx
Hope all those on radiation treatment are coping well and the creams are helping with the burns and itching.
I've got Trixie sitting on my knee she's good at making me rest haha coz i hate to move her but I've actually cleaned half the conservatory today before i got out of breath and knackered but feeling good for it, still doing jigsaws and reading When Breath Becomes Air by Paul Kalanithi.
Had my first Herceptin without chemo but still don't know what effect it will have as the nurse said it will still take about another 3 weeks before the chemo is out of my system xx
Seaside sar hows that cute baby niece of yours doing? Xx
Ocean21 how many more weeks on taxol do you have? X
Nettienoo hope your doing ok?? Xx
Marlyn, Sandraindurham, Stargazer1, Deano
Hopefully your all as good as you can be??
Hope MBJ is having a fantastic time on her cruise x
Not sure if I've missed anyone out but hello and take care xx
your bedtime routine sounds identical to mine, I go to bed feeling tired, get all snuggled under quilt....then bam! Raging hot flush, off comes the quilt on goes the fan.....then the brain goes into silly chat mode....all the while hubby is snoring like a baby next to me.....grrrrrrr! No matter how hard I try to get into some sort of routine...it fails.....even my calm app sleep stories aren't doing it anymore....
oh.....just to get a few hours uninterrupted sleep.........xxxx
I go to sleep with an eye mask on ( to block the light) it works- got it for airplane travel and it’s great.
Also when you wake up at 4 am ( I can relate to that ) try yoga Nidra or take deep breaths to relax your body.
Do not go on phone or iPad.
I have done this and it wakes you up totally.
The skin care stuff from LGFB is good.
No. 7 stuff.
Glad you had a good time at the session Rosina. I bought some new brushes to go with the goodies I got and they’re still all in the bag... good intentions but I’m not going to do my makeup for sitting at home and I can never be bothered or give myself enough time to do it if I’m going anywhere! The concealer pencil I bought a sharpener for - the concealer just snapped off when I tried that! And my Dolce and Gabbana lip liner won’t twist up out of the tube. Ah well. I’m sure I’ll use some of it at some point.
Thanks for the tips on the clothes Susie. I’m not buying anything new I have so many clothes already my husband would go loopy if I bought more! I guess I’ll just see how I go when it comes to it. I’m wondering if they’ll give me a cushion though. I have a couple of small cushions though not heart shaped so I hope I could get by without. I also had a clip put in at my biopsy but I was told it was more to locate it on scans - however with 11mm left I don’t think that’s a problem. I have to have the wire and the dye. Need to start writing questions for my pre op but that’s not until Thursday next week.
Trying to get work done today I’m still struggling to get up in the morning. Just want to go to bed and sleep but the routine goes like this -
Go to bed - find it’s a bit chilly so put pjs on and sometimes the electric blanket
Get cosy and think maybe I’ll fall asleep easily. Take temperature which is fine
Turn off blanket if on and try and relax
Start to get warm - take off some or all of pjs
Get restless - still hot, maybe open window or put fan on
Eventually get to sleep for a couple of hours at a time. Particularly awake at 4 when it starts getting light. Then too tired and toss and turn until I feel like I ought to get up which is sometimes not until gone 10...
It’s a mess. I have oncologist for my CT results at 9.15 on Friday so I’ll need to leave at 8.15! I’m determined to get up at 8 tomorrow and Thursday to try to break this cycle. Even if I go to bed later tonight to make sure I’m tired. I’m sure I’ll get there but I’m fed up having not properly slept since February!
Not many of us chatting today.
LGFB was good fun.
Daughter is very pleased with the goodie bag.
I kept the eyebrow thingy with a brush on one end and a twistable crayon on the other.
In bed now,
sleep well everybody.
Funny you should mention Download - look what came up on my Facebook memories this morning from 5 years ago!
Connor managed to get himself in a fight this lunchtime. There is a kid who has been baiting him for months. Today he chucked a sausage at Connor and laughed at him, pretty minor but it seems it was the straw that broke the camel's back and fisticuffs ensued. Connor rips the other kids shirt, and the other lad breaks Connor's glasses. School has now withdrawn their permission for Connor to have tomorrow off as they want both boys in detention tomorrow morning so they can get to the bottom of the incident, talk to witnesses etc. So no Download tomorrow at least not until evening/ night anyway. So I break this to Connor. He starts crying hysterically in the car and flailing about. I try to calm him down and boom, his foot hits the windscreen and cracks it in all directions. So now I have a hysterical child who can't even see as his only specs are broken and a windscreen I can't see out of. Oh joy. I must say I have had better days!!!!"
I remember that afternoon well!!! We ended up missing a whole day of Download as not only did he have to go into school on his day off due to sausage-gate, but we had to go straight to town afterwards to get him some new emergency glasses! and obviously I had to get the windscreen replaced in the car. Fun all round!
On other matters, I'm not convinced I like my boob being compared to an allotment
Good to know I won't be wearing shirts for too long Implausible. I don't normally wear them but hubby bought me a couple, bless and I already had a couple, impulse buys, so I should have enough to get me through. If the weather was warmer it may have been a problem. My arm movement hasn't been too bad so I managed to do my bra up in the normal way and roll deodorant under my good arm on Sunday morning☺.
Rosina hope you enjoy your LGFB session. After yesterday's disappointment and feeling emotional it will give you a well deserved boost. I love H1's comparison of the thinking of surgeons and allotment gardeners. Makes sense when you think about it as with many things there is no right or wrong way just an individual's preferred way.
Seaside Sar, sorry about the fly problem. If it was sunny it wouldn't be such a problem as you would probably be wearing sunglasses 😎. Bit of a problem when it's wet and cloudy🌫🌧🌫. After what you've been told about rads I think I'll take everything with a pinch of salt until I actually start to receive it. Somewhere along the line I'm sure 2 weeks was mentioned to me during a general chat with medical staff.
Following my son's return from Drownload he actually managed to introduce his muddy clothes to the washing machine and hang it on our airer to dry. Don't think he thought about the tumble dryer. Perhaps he lapsed back to his student days. Let's see if he'll iron it next. That will be entertaining as I normally do it - I do his as I'm ironing ours anyway. Although hubby took on that job prior to chemo starting. Anyway Chris enjoyed the event and was with a brilliant crowd.
It really is wet here now🌧🌧🌧🌧🌧🌧☔☹
Hello again Ladies,
caught the bus so I could get to the ‘Look Good Feel Better ‘ session at the Macmillan Center at Redhill Hospital.
I am doing this for my daughter
I am in a much better place compared to yesterday. H1 even said he prefers me shouting at him than getting all emotional ( as I was yesterday) which is amusing ( and quite insightful).
I also asked him why some surgeons use a drain and others don’t and he said that there are lots of different techniques for each operation and surgeons have a preference. He likened it to different techniques used in allotment gardening!
This actually kind of made sense to me.
Seaside I hear you about the nose hairs! My nose is constantly streaming, but at least now it is only clear runny nose stuff not blood! T gave me nosebleeds every morning for a week or so after treatment, so whenever I felt my nose start to drip during the rest of the day I was always paranoid in case I was bleeding out!
Susie - you should find that you don't need those button up / easy to get into tops for too long. I was back in my usual t shirts in less than a week after surgery. Just as well as I don't own any button up tops! I was living in zip up hoodies with just a bra underneath for the first few days But I had full enough movement with my dodgy arm to dress over my head in the normal way within 5 days or so....
Am at work today so just a quick pop by .... love to all..... Sarah x