Breast Cancer Now Forum

Be thinking of you tomorrow WTP xxx ... View more

WTP, so sorry to hear that you're dealing with this news. I wanted to also send you a giant hug and to echo what everyone else has said: we are with you all the way, urging you on to beat the bu**er and cheering on the sidelines as you kick its arse into touch!  Suze xxx ... View more

Big hugs WTP. We're all thinking of you xxx ... View more

Egg - you made it! Well done! Really, really chuffed for you. Xxxx   Esther - I found my Nordic Walking course via the Nordic Walking UK website https://exercise-anywhere.com/ Have a look for a beginners course in your area... there's a few other websites offering similar activities. I did the Penny Brohn course in Stafford over two separate days rather than a residential. They do a few across the country like that. I've also signed up for the Macmillan 'hope' course covering "Moving on" after treatment. I'm throwing everything at it!   Blue - I'm not back at work yet, meeting them tomorrow to discuss when and how I go back. I want to take my time as I know it will be full on!   Quick hair question... I too am at the baby hedgehog stage but the colour is odd. Sort of 'dull dormouse meets vacuum cleaner fluff'. Where have my brunette locks gone?! Don't get me wrong, I love having hair but I had no grey before. My eyelashes are coming back but they are now blonde! What's that about? I'd prefer it the other way round....;)   As for Facebook, I'll set up a group and then probably work out how to get us all on there. We'd maybe need a couple of us as administrators on there that can add people etc. Also, I can maybe do some set up instructions for people wanting to join FB just for the group!      Suze xxx         ... View more

Hi ladies I will do a longer post tonight to answer stuff but wanted to get your thoughts on us potentially setting up a private Facebook group for all us Jan 17 starters?   I know that the February or December starters did this. My thinking was that sometimes we are posting really personal thoughts and feelings on here for anyone to see. Although we have user names this stuff is all searchable by Google and someone could potentially build up quite a few facts about each of us (trust attending, geographic region, age etc). In a private Facebook group, only we'd see the comments.   We could set one up that was private and by invite only, and restrict it to all those who've been on the journey so far? I'm sure, like me, some of us have developed good relationships on here and really care about each others' battles. In some ways we are closer than some of my more obscure Facebook friends!    i think we could still run this thread too and invite others to join later on if they started posting but I'd like to continue this community for a while and wonder if it's time to do this?.I'm sure, like other groups, we might organise a meet up in due course maybe (we'll all fly over to see Jackie!).   What do people think?     Suze xx     ... View more

  Hi everyone   I asked my Onc about participating in the add aspirin trial and she's done nothing about it. I don't see her again. Has anyone else thought about just taking it? It says on the trial page that my trust is participating though. Yet another issue I have to chase and push by myself.   The trial pages say not to do it yourself as the quality of the drug might not be the same but, really? If Egg's onc says we could just take it anyway.... wouldn't we just do that? They do eight weeks at a low dose first to check you're ok with aspirin and then up it. Trial doses are 100mg or 300mg daily. I'm confused. http://www.addaspirintrial.org/treatment_in_the_trial/    On another note, I have a personal training session booked this week with a trainer who is a CAN specialist -  trained in helping people with cancer get their fitness back. I have also started learning how to do Nordic Walking which is meant to be good for bc patients and our flexibility. Only done one session so far but it was really good and I managed an hour's walk and burned 500 calories! All without feeling too tired. I can recommend it!   WTP, not been on the boards for a few days as I've finished all my treatment now and am two weeks past radiotherapy. I just wanted to send you a massive hug  🤗 as I know how tough all this is and wanted to let you know I'm thinking about you.   Blue2 and Slowski -  I am also suffering anxiety and worry. I'm having no hormone therapy as I'm triple negative so I feel quite abandoned. I'm seeing the radiologist for a six week post rads follow up and that's it until Nov when I have a mammo booked. I have spoken to my local day hospice about some counselling, I've been on the breast cancer moving forward course and the Penny Brohn course... not sure what else to do!   Scotty 👍👍👍👍👍 Great news, really chuffed for you!    Suze xxx ... View more

Hi everyone   OMG, I will be first past the post then! Gulp. The teddies' trailblazer (she said, with her positive hat on!).   Lighthouse, thank you for the hugs, I am pleased it's over but I'm a bit scared about finishing. I'm seeing my surgeon as well tomorrow as it's exactly six months since surgery and five months since chemo started. Planning a nice lunch with my hubbie after rads and before we see the surgeon (he is a good surgeon but has a crap bedside manner so will brace myself for that!).   Blue, well, I'm feeling weird about finishing! I totally understand what you mean about feeling young. I never saw anyone near my age until rads started. It actually made me feel worse during chemo when everyone was a lot older than me. I then felt selfish for thinking that! It gets reinforced during treatment, "you're having rads boosters as you're young to get bc" etc. It wasn't until I went to that pilot course for Breast Cancer Care 'Younger women Moving Forwards' where I, at 44, was the oldest of the eight women there! That was humbling. By the way, I have the last session for that in a couple of weeks and I'll share an update with you all.   Robin and Nicky, glad to hear you're finishing with me! Best of luck for your last few sessions.Big hugs!   Depending on how tomorrow goes I may also join up to Slimming World tomorrow night to try and shift some of this extra poundage before I go back to work! My suits won't fit yet!    Suze xxx       ... View more

Wow, well done WTP, 33 mins is some going. You should be very proud of yourself, we're proud of you.   The photos are lovely and I am gobsmacked by how much hair you have already! I'm still at the 'shiny scalp' and bum fluff stage😂😂   What shock for you all about your husband but I'm glad he's now doing OK.    Big hugs and lots of love Suze xxx ... View more

Hi Nicky, I've just had my 13th of 15 rads today so, as I had my surgery in December and am almost six weeks past my last chemo, I completely finish all my treatment this Thursday (General Election Day!). Wow. (I'm not having any hormone therapy as I'm triple neg).   Are we the first two of the teddies to finish in the next week or so or is there anyone else out there the same? Suze xxx ... View more

Hi Blue I've just had a physio session this morning which encompassed work on my venous cording in the arm and also caring for your mobility/flexibility during and after radiotherapy. The team I have are specialist Macmillan physios based in the Trust and they are fantastic. I got lots of advice and tips plus I talked through what I wanted to do with exercise and how I could get back to fitness.    The physio was saying there is actually little research and guidance on this topic out there. She was saying she needed to do some research studies to share their knowledge! She said that the cording takes a while to go but keep persisting with the exercise and it gradually gets better. The veins basically suffer collapse and develop scar tissue that needs to be broken down. Rubbing/drawing your fingers slowly down the damaged vein and stretching the tissue (to the point your skin reddens and it's a bit sore) is good for you. Mine stems from my first chemo on 12 Jan as I had a PICC line for each dose after that. She wasn't surprised that five months on from that single infusion it was still lumpy and sore, it takes a while but does get better.    She he also gave me some good advice on numb fingertips and soreness. She said you need to restimulate your nerve endings so make time to rub your fingers on different textures: rough towels, velcro etc. Rubbing in  vitamin E oil on your fingernails and tips for a few minutes is also good. Same for toes if they are suffering. Hope you find that useful.   WTP: how was the Race For Life? Tackling that so soon after your final chemo is true warrior stuff. I hope the SEs didn't interfere too much.   Suze xxx ... View more

Well done WTP! Fab news. Enjoy the party mood. Hope the SEs are OK for this last time. Suze xxx ... View more

Robin, so sorry to hear you had the misfortune to cross paths with an ignoramus. Sod her, silly cow!    Most of us were probably blissfully unaware of the full impact of chemo before all of this. You know about the hair loss but I didn't appreciate all the other side effects. However, as we're all all lovely, normal people on here 😉 we'd have leapt to our feet if someone asked for help like that.   The new knowledge we all now have will help us support others who will, sadly, go through this in the future. We know that sending flowers is lovely, but there's lots of other things that mean the world when you're going through treatment. People that sent me long, chatty texts or messages rather than short a 'how are you doing?' (which I never had the energy to answer several times over) were the best!   I might get Jo Malone's autobiography now. I hear the pages are infused with perfume, so it sounds like an experience as well. One that might be a bit lost with the Kindle version...!   Suze xxx   ... View more

Hi everyone   I've had my fifth radio session today so that's a third of the way through. So far I have aches but no burn feeling.   On 9 June that will be 'it' for me. As I'm triple negative there's no drugs for that so you just end active treatment after you've done the surgery, chemo and radio bits. I think we have another one or two people who are TN like me on the board don't we? It's going to feel very strange.    Blue - I'm four weeks past my last chemo and still feeling the after effects. The six week mark is my target for feeling better. At least that's what my Onc nurse advised me to aim for. Seems unfair to still have aches and pains and all the other stuff but you will get there. I think you should be kind to yourself and recognise what you've been through and achieved, it's no mean feat getting through this Chemo lark!.... I hope a couple of days away over half term will help you feel better and just have a break from routine. Halve or ditch that flipping walk if you think you won't be up to it! And, it certainly doesn't sound like you're a binge drinker to me and I bet most of us have put on some weight. My weight gain is 98% down to scoffing lots of Double Deckers I think. 😘   Nicky and Robin, well done on getting started with radio. As I'm a few blasts ahead of you I'll let you know of any other SEs I get.   Beedot - many congrats on passing the finishing post! I hope the SEs are kind this time.    Suze xxx ... View more

Just on the whole radio/bath thing: you CAN bath but not with really hot water and the water level cannot be over your boobs. Which basically means having a bath like a toddler, sitting up in 6 inches of tepid water.   And where's the fun in that? Instead of a good book you'd have to revert back to playing with a rubber duck.   Suze xxx ... View more

Blue, it seems you are like me: born to bath! After my PICC line came out I was straight in there! Submerging my arm (after 12 weeks of keeping my PICC arm out and shorter baths as the plastic sleeve filled with condensation after 20 mins) was bliss, I was loving normality. Like you, escaping for a hour! I was working my way through a Molton Brown gift set for goodness' sake!! Get loads of baths in ahead of radio.   Depends on on the radio side effects but I'll be back in there soon.   Yes, there are new nails under the ones that came off but they're ridged, lumpy, half sized and dumpy. I used to love my nails and a gel manicure was my fortnightly treat. Vitamin E oil will help and, as my hands are rough due to constant chemo bug fear washing, I have bought some white cotton gloves to wear overnight with hand cream on. I look a bit like a crap mime artist, especially if I wear a stripy tshirt!  Another thing to add to the chemo 'So not a Goddess' check list (although my crusty bloody nose is no longer, yay!).   Off to my second radio session now. Hugs to all the teddies and special gentle one for Jackie... hope the Bob isn't too painful.   suze x ... View more

Yay! Well done Blue!!!! Xxxxx ... View more

Hi everyone, thanks for the lovely messages about my birthday.      Hugs to Esther...I know how you feel about the Tax side effect still going on. I'm 21 days past my last Tax and feel worse this week than last week! Really achey bones and muscles, sore and numb fingers and sooo tired. I saw my Onc nurse today and he said it will take another three weeks for the drugs to leave my system (six weeks from last dose) so this is to be expected. Lovely. By then the radiotherapy side effects willl take over!   I've had my first radiotherapy treatment today. It went fine. You feel a bit detached with all this kit whizzing around you. I kept thinking it was a bit like that scene in the film Robocop when they attach all the metal bits to his body to make him into a robot! Apparently my breath holding was top notch. (Felt very pleased to be praised for that hitherto unknown skill!).    To to all those who haven't started it yet... get your long hot baths in now! You can't have them during radio... no boobs submerged in hot water, no scented bubbles either! If I'd known that I'd have had a three hour bath last night! I've only had the PICC line out for three weeks and was just getting used to enjoying lovely deep baths again.    Thanks to the Taxotere, I'm down to 7 fingernails now. I have a manicure booked for Thursday. Should I ask for a cheeky 30% off?! 😂😂😂   Suze xxx ... View more

Happy birthday Ebim!   It was my birthday on Tuesday and I made the best of it but plan to celebrate it again at the end of radiotherapy!   i just wanted to share (OK, basically I mean have a moan with people that understand and won't be completely grossed out like my friends) a new side effect of Tax I've just discovered. I went for a manicure yesterday and I've been having them every two weeks (dark polish as advised by the nurses) and I've used vitamin e oil on my nails every night. When the manicurist took the polish off, we discovered four of my nails were coming off!!!! They've flaked at the bottom, the nail bed, and also separated from the bed further up. They look gross. The new nails are regrowing underneath but it will take ages to get them back to normal. Remember I ripped off my thumbnail early on in chemo as I'm a clutz? That's still not back to normal.    i did ask my Onc nurse about this before I had Tax and whether I could use the ice gloves and booties that some trusts offer. No. She said they never have problems with nails and Tax. Ha!   So, this stuff has gone for everything that helps you feel a bit more girlie and glam... hair, brows, lashes and now nails.    Combine that with my still crusty nose and I'm a goddess at the moment!    Suze xx         ... View more

Egg (and anyone else with cording/vein issues), here's what my physio gave me as exercises to help. She stressed that you shouldn't do anything until a week after your chemo dose as our veins are too sensitive (don't we know it). The first bit below is instructions for where I have to massage/rub/stretch the tissues on my forearm (without any oils) using my other hand. My cording is on the left, hence the 'using the right hand' reference.   ... View more

Well done Lighthouse!!! Hope the SEs are bearable xxxx ... View more