Yes, hope Sue and Delly are having a good time, and Sue’s mammogram was okay.
Oh no Janey, I love Not Going Out, didn’t know it was on, I’ll have to see if I can get it on catch up xx
Hi there…sorry to have asked abut boosters, it seems to have caused a bit of worry.
I think the reason we sonetimes arent told, is because maybe we dont ask the right questions…I mean until today, I didnt hear about boosters… There mst be loads of things we dont get told, purely because we dont know what to ask??
Cla46, you did ask me (centuries ago) but this morning - about how long the rads keep working … Remember mine was in 2001 so might be out of date…but yes I was told that…also had a chat about needing to stay out of the sun,( or the rads bits to) because burns could occur years after…eg you know that bit at the side of the neck? That they radiate, That used to get red if I sat in the sun for more than a short while…
but ladies, do check for yourselves…things may have changed and I had 25 days…they dont do that now.
i never got burns during my actual rads tho xx
Morning lovelies,
2 glasses of wine and I was out for the count,
Moijan you didn’t scare me I remember them saying now about being very careful in the sun and using high factor sunblock etc. Like you Helena I’m mostly covered up.all year round but I wear a lot of black and that attracts the heat. I remember them saying about types of fabric as well because the sun can get through it! I think I’ll take a travel bottle of sunblock and keep it in my bag all the time.
It’s funny but going through everything I sometimes forget or get confused so I like it when we can discuss stuff. Xx
Beth sending you extra love and hugs today. Xx
Have a fab day my lovelies, hubby’s got a new camera so I expect we’ll be out and about today lots of love and hugs Clair xxxx
Dizzy I’m seeing my oncologist on Wednesday I’ll ask her about future issues and what it all involves.
I’m going with a long list
Sorry that went before I’d finished…
She’ll be fed up with me by the time I’ve finished. Xxxxx
Spot on Charys and I have my list I add to of questions now - although I’ve now a lot more faith in my GP. Chased Dexa Scan again and they’ve forgotten me again!
I hope we hear soon Sue and you and Delly are ok. Off to Bath today. Big drive for me but meeting an old school friend to remember another one. Better get my glad rags on! Hugs to all xxx
Morning all, just caught up on last nights posts before heading out for my walk. About the sun after rads. I was told to be careful with that area always, using high factor sun cream as it’s more likely to burn than the rest of you. I’ve been a sun worshipper all my life, and I know it’s very bad but don’t use sun cream at all, just moisturise well after, . I just do not burn in the sun ever, No matter how hot or how long I lay in it. That’s why it was such a shock how badly I burnt with the rads. Now I’ll alway use sun cream. Guess my face shows the effect of my years of sunbathing, like. Madge from Benidorm lol. Enjoy you day xx
Charys, I tried to ask questions and more than once have been told to stop! The surgeon who offered me four different kinds of mastectomy reconstruction all with different complications, recovery times, hospitals they would have to be done at, versus lumpectomy with rads and another operation to follow two years later.
She outright told me to stop asking questions. I was so shocked, because I’d sort of guessed I might have to have one, but up to that point no one had said it, they kept telling me it was only DCIS, you’re so lucky. So I was trying to take this massive thing on board, and I suppose she wanted to deliver her spiel and answer questions at the end. But by the end I’d forgotten the beginning and the middle. I was trying to get my head round which flap leaves you with restricted use of your arm and shoulder, which one was ten hours of microsurgery in Salisbury, which one could I have in Dorchester, which one used the implants which could get contracture and have to be replaced? It was so complicated.
But I have been a questioner, and I did a lot of research, there’s a lot of information out there. And I did ask for copies of my pathology report, I’ve seen photos and diagrams of the operation I had, I know the name of the operation ( Benelli round block therapeutic mammoplasty)
I asked questions and looked everything up obsessively because it made me feel a bit more in control, and less like a victim who was just having stuff done to her.
I asked for a different surgeon to do my operation, and he was lovely, so that was one good, one bad. But yes, my oncologist was patronising, just wanted me to sign the rads consent forms and get out. And didn’t even read my notes and bit my head off when I asked if he knew my endometrial biopsy results, and made it sound like I was stupid for having worried about it.
He’s been amazingly nice ever since I made a fuss about it.
And yes Charys, get fed up when professionals cut me short, or are rude…one day im going to reflect out loud on the reasons that particular prof was so…
eg, oh so sorry if I asked you an irritating question? I thought you were the one to ask…but I can see you are very busy! Or sonethng similar, but in an, oh so gentle and pleasant manner…
or, sorry, I hadnt realised you were havng a difficult morning! Who would yu reccommend I speak to?
xxx
Moijan, those are brilliant replies, I must write them down for next time…
Oh joy, got to book a smear test…In October when the handsome Swede was doing horrible things to my endometrium, I asked if he would do a smear test while he was there, so to speak. I knew I was due another. But no, getting it all done in one go would have been far too easy.
Wonder what the chances of getting a recall are, it had better not happen…
Dizzy
funnily enough I was thinking about mine this morning. Sure I have one due early Spring and is bound to be about the same time as my next appt in the breast clinic. The doctor I always used to see for my smear test has retired now - she did every one I have ever had since my first ever letter - not particularly looking forward to getting my drawers down for a new one!!
i agree totally what has been said about some of the professionals losing their bedside manner. I think some of them forget there’s a real life person at the end of their tests and diagnosis and that person is in the most terrifying time of their lives and a bit of slack and empathy wouldn’t go amiss. I’m also at the point where I wish I’d asked more questions. No one has actually explained what happens next, what the coming years will entail - I only know because of conversations we’ve had on here and surely that’s not the way it should be. I need to get my a**e in to gear and start getting some thoughts and questions together. I’m ready for the info now!!!
been out for a lovely walk with hubby and Mac so going to chill out with a paper and a coffee before we head out for a bite to eat later. No cooking today!! Yayyy!!
hope all u lovely ladies are ok today
catch up later
xxx
I didn’t ask any questions, or none that I can remember, I was in a state of shock when told my diagnosis and just went along with everything like a good girl. Having said that, My breast consultant was lovely, the oncologist I saw before rads was nice and told me all the risks but rather frightened me by calmly telling me that I was a lefty probablility of heart damage in later years. Saw the top on oncologist for follow up, dismissive, just told me he’d never seen the blackheadvthingies but probably skin infection and possibly permanent, come off anastrozole as my body couldn’t cope with it, goodbye. My main beef is with my BCN, never spoken to her since diagnosis. When I ring one or other of her colleagues ring me back, no continuity. When I phoned the other day about this cording thing I spoke to the senior BCN and kind of mentioned that, she became all defensive and said as long as someone did it was ok, and sounded a bit annoyed with me. I now don’t feel comfortable about contacting them again.
Walk was nice this morning though poured with rain on way back though wasn’t forecast. Only clocked up 7.5 miles today as walked the road way rather than the scenic route because it was too muddy. Not so pleasant walking along main road with traffic and exhaust fumes. Roll on Spring xx
Lesley
know what you mean about the BCN’s. I’ve not spoken to one since the start of Nov and even then I had no idea who she was and I hate having to explain everything each time. I have no idea who I’m meant to contact now for advice or help. BCN says contact GP if I need anything, GP says to speak to BCN or oncology nurse ( don’t have one of those either) as they are the experts.
There is one BCN who was lovely but when I have phoned to speak to her, someone else has called back. Even a receptionist rang me back one day. Doesn’t help with the “what now” feelings at all.
Hopefully once I have my mojo back, I’ll have the strength to speak up.
xxx
I’ve had a long questionnaire to fill out about all elements of ‘cancer services’. Anyone else had one ftom their local trust ? I have had exactly same Beth with the BCN, never the same person. …little contact at all…gp says contact this person …this person says gp. Lol
3000 been and gone H…right when shall we celebrate now…5000? Still nothing from Sue…really hoping all is well.
Yeeaahhhh Lesley…snd WE sorted out what your black spots were! Hurrah for us. X
I’m a bit concerned too that we’ve not heard anything from Delly and Sue.
I think we all are Beth ?