Breast Cancer Now Forum

Oh @grannyp so sorry you are feeling aged...but think I know what you mean... you sound  fitter than me, but I have always been active and spend as much time as possible outdoors. But after half to an hour pottering on our land, I feel shattered these days. Miserable isn't it...I know the exercise is beneficial but it's also quite disheartening when it feels so hard. We will get back to who we were, though it may take a while.....xx ... View more

@BelindaFleur just re bloating, mine isn't constipation,  I'm much more likely to go the other way! It's more like a kind of IBS thing , or maybe stomach slow to digest, not sure.. Well done on your fluid intake 👍 😊 Yes, weirdly I quite enjoyed my little drive to the hospital... then a short walk with the dog. I also cleaned up a bit this morning and now I'm knackered! I think I won't hear about the covid test unless there is a problem. They wanted it before my picc line insertion next week. I gagged twice and my eyes watered so I'm hoping that means I did it right! X ... View more

@Mumboo Blue Peter badges, brilliant! Well done to them 😁 . Glad you slept better,  but not surprised about some tears... what a time you must be having. I know friends who are home schooling have said the wifi stuff is infuriating... Good luck with your gentle hair washing today 🤞 . Mine is very thin now (not cold capping), I'm always in a beanie. Tried the (borrowed) wigs again the other day but can't imagine going out in them. Hope school goes okay today, nearly the weekend...xx ... View more

Morning @BelindaFleur @Mumboo and everyone. While I remember (!) , on Box Sets - I've started watching Spiral from the beginning - it's on I player, French with subtitles, thriller, police drama, set in Paris. I love it - it's quite dark, stylish, bit gory in places (but I have a low tolerance) and very cynical, in that shrugging shoulders French way! And there are 8 series, so could fill a gap. I really want to watch Succession, but could only find it to buy on Sky. I'm not paying any more for TV.. Previously I have loved This is Us (Channel 4) but not sure if it is on All4. (I don't do Netflix etc). And something now, if you like dark humour - I love Back on Channel 4, new series just started and 1st series on All 4. Glad your day yesterday was better @BelindaFleur but that toxic feeling is horrid... I'm not that good at drinking water, but yesterday managed several large glasses with lemon barley water in that helped. I do feel better if I get more fluid down me. I'm so used to drinking lots of tea, that I struggle with how to replace it. It's only in my last week that I can drink any tea. Food wise, I have few tips as my taste changes all the time, so I ask my husband to get stuff in, then can't face eating it. And I don't like preparing food much either so I'm living a lot on eggs, beans, tomatoes and mushrooms. I have had a lot of stomach bloating so I am trying to eat much smaller amounts (I'm a pig usually and love a piled up plate), more often. I think it is working... In terms of the liver stuff -I'm not really worried as I know the liver will regenerate. And if they need to put the Docetaxel (it is most likely to be that as it is the most toxic) down, that's fine with me. I hope that this chemo is just 'belt and braces' so anything I can tolerate is a bonus.  @BelindaFleur you do have a long journey, and it's only natural that you will feel down at times. But your outlook seems generally positive, so that should see you through. And hopefully, as the spring comes, we will be able to see friends and family more which should help with morale too. And, we are all here for each other which makes a massive difference, to me anyway. I'm off to do a covid swab now - then I have a trip out to the hospital to drop it off. And I'm looking forward to that! x ... View more

Hi @BelindaFleur and everyone,  Sorry you had a bad day yesterday, any better today? Glad it wasn't a UTI, but not surprised if your bladder is irritated, with 6 cups of coffee on top of chemo! I guess they will try out to balance your well being, against the need for getting the marrow going, in terms of the dose of Filigrastin. It's all so complicated, isn't it, weighing it all up. My liver enzyme (ALT) is raised, which is bad. I'll get another blood test next week and I'm assuming they will reduce the Docetaxel if it's still up. But we shall see. The liver is amazing at regenerating, but I don't want to take risks with it either... I woke up with a banging headace today, got rid of it about 1pm, when I found the energy to go outside. So I had to remind myself about good days and bad days... feel okay now. Good news about Her2 neg, @tennisgirl , will hopefully mean a bit less treatment. How are you feeling about it all now? Hope your days are going okay. Yep, seems like next week is treatment week for a few of us, let's hope we can enjoy this week, the days before it all starts over.  @BelindaFleur how many treatments do you have left? I'm having the picc line put in on Wednesday, then treatment Friday, like you, which will be half way through. I've enjoyed looking at the October 2020 thread, as they are starting to have their last treatments. Good reminder that we will be there one day too!  @Mumboo hope home school has been okay today  x ... View more

Wow @leianajones you do sound sorted! Impressive organisational skills... I have little to add, but in terms of what to wear, I would go comfy, the first day in particular is quite long. They need to be able to get to your arm so I wear a t-shirt/tunic with short sleeves and then take a cardi. I take a little fleece blanket too, but they will have blankets there. I am not doing the cold cap, but I've read that people say it makes you chilly, so layers I guess. I've already had surgery and one of the good things about going to chemo suite is that I feel no need to wear a bra or the prosthetic (I only have the fibre one, not had the fitting for the other one yet), I just wear a vest. We are a pretty motley crew, varying amounts of hair, beanies, wigs etc. I don't feel at all self conscious! What is it about silk pillow cases? Is it to protect hair? I do have a silk sleep cap which a friend lent me, other than that, I've not got any special clothes, bedding. Am I missing out?? I have bought all my hats, beanies, bands from Anabandana - really good value and made in Devon. x ... View more

Hello all, @BelindaFleur I have that problem with messages too! Can't possibly retain what everyone has said (or even their names!)... You definitely sound as though as Netflix day is in order... Sorry you had a crap night. I am like a nurse on a drug round with my meds... can't help myself, it all has to be in order or I worry about making a mistake. At least the injections are easier than last time, that is encouraging. I have come to stop expecting things to improve in a linear way - I find they go up, down, round and about and if I accept this, I cope better... Ooh, your job does sound interesting, but I imagine that being freelance in these difficult times, with cancer on top must be quite stressful? Yes, my work are being brilliant, I feel really lucky to have their support and also be on full pay (as long as I can get back in May) while this goes on. I just don't have to factor it in, which is a great weight off. Great that your folks have had their vaccines. I don't have parents now, but my husband's mum lives with us (in an annexe)  - she's a healthy 77 year old but I know that he will be so relieved when she and I have had ours. He works at home - which carries its own stresses!  @Mumboo - I spoke with a receptionist at the GP yesterday about something else and she checked and I'm on the clinically vulnerable list for the vaccine, so will get a call when it is our turn. There is a lot of variation in different parts of the country. There is quite an elderly population round here, so I reckon there may be a way to go yet. Also, can I check - are your nails showing any signs of being affected or are you painting them in advance? Mine look fine so far, so I've left them alone, but maybe I should do them anyway? @Erin 35 good that you have a date - I'm due chemo next Friday (29th) too. The water thing is very important and I find it hard to remember, might take @Mumboo 's tip on that. The other thing I found helpful was to try and get easy eats in - soup, packet rice, fruit juice etc. It's hard to know what you will fancy, so get a range in. I've gone to very bland food, having always added chilli to everything previously, I can't even tolerate much pepper now! I also bought a thermometer, some loperamide, senna (all bases covered) and Biotene mouthwash. There is a really good checklist somewhere - think it is on the December starters thread (I go on both as I started late in December) which I had a look at. Anyone know how I can put that on here? Think it may be a hard for my 55 year old brain. But there is a search option, you could try putting in Chemo checklist? My other advice would be to have a browse on here, I've picked up loads of tips and support. I tend to skip posts that feel too hard to read or touch a nerve on a not so good day. But sometimes, I look all over the place and find it helpful. Go with what feels right for you. I've seen a few threads on here about friends - it is interesting, isn't it, how different people react. I have not necessarily picked it right with mine, but think I've been lucky on the whole. Mind you, I feel so anti-social that I'm probably the rubbish friend at the moment, rather than anyone else. I've really just picked a few out and stay in touch a lot on WhatsApp. People who live locally sometimes come up and we have a distant chat, but whereas I was meeting for a walk previously, I prefer to go on my own at the moment. I hope I find my previous sociability again post chemo.. I'm feeling quite perky today - have developed a small rash on my cheek, but it doesn't itch, so I'm ignoring it. Take care all x ... View more

Morning all - how are you all getting on? Hope things feel as gentle as possible. It's blowing a hooley and pouring with rain here, good day to stay in, warm and cosy, I think... x ... View more

Morning all, yes, there is a lot going on, isn't there... I guess as we get further into the treatment, we have that cumulative effect of the toxicity... I echo those who are on Docetaxel, as I am, that it's not been as bad as I was expecting. I do feel wiped out and can tell my body is full of .. well, poison really. But I've been up everyday and not had any major problems yet. My liver is struggling a bit apparently, but I think they will drop the dose if that carries on. I am on the same meds for all 6 cycles, (no 3 next week) so don't have anything to compare it with. As @Karden says, the long days are because all meds given separately. And at my place they sit with you for the first 15 minutes of the first two doses of Docetaxel, to check for reactions. Which I thought would be scary, but in fact I found it very reassuring. Obviously the hospital day is no fun (what is, at the moment..) but I actually find it quite relaxing in some ways. I feel I have to be so vigilant all the time, in case I miss a sign of infection, that having a day when the nurses are in charge of me, is quite nice! I try to find pleasure where I can... Thank you to all who speak positively about Picc lines. Mine is due to be put in next Wednesday. I was so sure I didn't want one, but I've definitely come round to it.  @Georgie76 sounds as though you have a lot to deal with - it's all so complex and multi-layered, isn't it. You (all) sound so brave, finding your way through it. Hope you daily weep helps a bit? I sometimes find myself with massive tears dropping onto my chest, when I didn't even think I was feeling that sad... @grannyp @Karden hope all goes as smoothly as possible today (or tomorrow?) and that everyone has as good day as is currently possible. xx ... View more

Hi @leianajones and welcome! Obviously it would be preferable if you didn't have to be here, but if you are anything like me, this forum will be a big help. There will be plenty of people to offer tips and also just to listen and empathise. I'm on a different regime from you (I'm on Docetaxol, and am Her2 pos, have already had mastectomy). My main tip is to take each tiny bit as it comes. The big picture is, for me, too big, so I'm chopping it down into more manageable pieces. I hope your talk with your team was helpful and you will probably have lots to digest now. Take care x ... View more

Hi @BelindaFleur - you sound such a bundle of energy - wonder if you feel it?! Oh, wine, remember that? Like you, I had one go at having a couple of glasses of wine on New Year's Eve (think you had a Baileys?) and then felt so, so rubbish the next day. So it's off the agenda for a few months. I was pretty disappointed that, after the driest Christmas I've had for nearly 40 years, my liver function wasn't great! I get LFT's done yearly, because of other meds I take, and they have always been fine, even though I'm a bit of a lush. One dose of Docetaxel and my poor liver is struggling... Still, I have a very nice, M and S bottle of Pinot in the rack waiting for me. My birthday is in mid April and if I manage to have all chemo as planned, I should be on day 15 after the last one by then, so just maybe...? We will be such cheap dates!  Re surgery - Yes, I must admit that I am glad they did surgery first, but I know there are swings and roundabouts with it all. I have done very little research, just gone with what the Oncologists and surgeons suggested. I am not planning to have reconstruction, but am keeping an open mind as I don't think I can be sure how I will feel down the line. At the moment, the wonkiness doesn't bother me, but that is probably because I am still in the middle of treatment, so what I look like does not feel important. That could change once this is over. They aren't offering reconstruction at the moment at my hospital, except at the same time as initial surgery. Presumably that will change post covid.  Ah, your GP has put you on shielding - how do you know? I haven't heard anything about shielding or the vaccine, just assumed that I would automatically be on a list. I need to ring my surgery today anyway so will ask them to check. Do you live on your own @BelindaFleur ? I wonder how you find it, if so? A friend of mine went through this a few years ago and lives alone. She said she was glad, as preferred just to hunker down and get on with it. But that was not during Covid so her adult children could pop in and friends took her food round etc. And on good weeks, we met for walks occasionally. I am aware that I'm pretty unfriendly at the moment, but I do like the security of my husband being nearby, even if I don't want to chat with him! We have been in separate rooms now for a few months, which is starting to feel too normal! We will reunite one day... but probably not until after chemo as my sleep is so all over the shop. I like having a low light on sometimes too - it reminds me of being a teenager and not sleeping - I used to read and read until I literally fell asleep in the book. I don't sleep well anyway, so this is not a big problem for me. As long as I can get comfortable and relax, I'm happy. Have you nearly done with the injections for this cycle? Was it more manageable this time?  All the best for your day - hope a bit of work helps - what do you do, btw? xx ... View more

Morning everyone, welcome to Tuesday... We are in the middle of Storm Christophe, here in Derbyshire, so today will be more of an indoor one I fear. But I will get outside at some point, it is not good for my well being if I don't take some big gulps of air each day. @Mumboo hope you enjoyed your gourmet dinner! 😂 How on earth you home schoolers manage, along with chemo, I just don't know. I don't cope that well with just talking to my husband, let alone feeling responsible for children's education.. You all deserve a  🎖 . @tennisgirl hope you are managing to let your head rest a little this week. And don't forget that we are here if you need to let a bit of steam off, or just have a virtual cry with us. @BelindaFleur - how are you today? I'm feeling okay again which does feel a bonus - it's earlier than after my last session. But I know better than to assume that this is me for the next 10 days - who knows what joy it could throw next? I think I may have a bit of a cold - where did I catch that from?? My husband feels coldy too - I suppose he did go to the supermarket on Saturday evening, though he said it was deserted...  All the best for today, all x ... View more

Morning @dipitdee and everyone. Crikey, that sounds scary, glad it wasn't a clot. Did they work out what had caused the pain? Another side effect? Hope things go more smoothly from here - as if you haven't got enough on, with a 3 year old to home school too (I've heard CBeebies is very educational  😊 ). The tumour not shrinking yet must be disappointing, but you still have plenty of treatment to come, don't you?  The rollercoaster that is chemo is quite something and I agree, @grannyp , it is impossible to really understand until you are in it. Even though I look pretty well, as folk like to tell me, no-one knows how odd and just rubbish I feel deep in my body. And, even though I feel quite well at the moment (Day 11), I still woke up and found myself crying. Yesterday I was feeling optimistic, looking beyond chemo and even booked some annual leave at work for September for a trip for cricket and a music festival. I don't even know if I will be able to go as I will still be having the Tratsuzomab injections (anyone know how immuno-suppressed they make you?). Today I am back to wondering how on earth I will make it through another 4 treatments... Good luck those of you waiting for blood test results and treatments. Hopefully you will be one more down soon. My next hurdle is a picc line insertion next Wednesday. I feel fine about it now, trying not to dwell too much, I need to enjoy the next week of (hopefully) feeling quite well. Hope no-one gets washed away in Storm Christophe x ... View more

Hello @nicklespickles and everyone newly diagnosed. I just wanted to say a quick hello and send some caring thoughts, as your post was so lovely. I too am a health care professional (nurse) and can empathise with your feelings about 'leaving' your colleagues at such an awful time. I was diagnosed last October, have had surgery and am in the middle of chemotherapy now. I have been off work since the start of October and swing from just being relieved not to be there, to feeling really bad for my team (I am a team leader). It's so tricky, isn't it. But I hope your colleagues and managers are being as supportive as mine - they are all really clear that I need to take all the time I need, so that I can go back when better. And, really, I know that I would be of no use at all to them. I am so sorry that you find yourself in this position, especially when you are so young. But you will have lots of treatment options and, until you know the full picture, you can't really know what will happen.  So really, just a virtual hug and a reminder that this forum really is the place to be. I am finding it so helpful to describe feelings that I may not choose to share with those close to me. Take care xx ... View more

Morning all,  just sending a Monday morning hello and hoping that the week is starting as well as possible. @grannyp @Karden hope you are both feeling okay and that treatment goes well this week @Karden  Sounds as though some of us may be offered the vaccine this week? ... View more

@Tomboy7 hope you are doing okay now and that all can go ahead this week... What regime are you having? By the way, a bit of a slow response, but I just re-read your post. You didn't sound negative at all, in fact very kind and generous considering what you had just been through.  Hope everyone is feeling as okay as possible today, at the start of a week when we may be offered the vaccine?? ... View more

Hi @tennisgirl , so sorry you were having such a horrible time last night and hope you got some sleep? I  have a habit of hearing something, accepting it fine and then going back to it in my head and dissecting it until I pick out all the worst bits and discard the more positive ones... It's so hard, isn't it. And, as a health care person, I am aware that we can just tumble out words and not really think about the affect they may have on someone. Do you have a breast care nursing team? Is it worth giving them a call to talk it over? I too had a grade 3 tumour, as well as DCIS, and had a mastectomy. I am Her2 + as well as hormone positive, I am just assuming that I am being cured and if not, I'll face that when it happens. That is on a good day, by the way. Sorry for my ignorance, but what is a FNA biopsy? Whatever, it sounds good that they were normal.. I think it was @Mumboo who shared the ideas around anxiety management, Headspace app etc and I'm sure that's good advice. The other way I'm trying to deal with it is one horrible thing at a time... the biopsies, the consultant meeting, the surgery etc. Weirdly, probably my hardest bit so far was having a covid swab taken! I'm okay with needles, but having someone stick a swab down my throat, was a step too far. I cried and pushed the nurse away, very embarrassing... Fortunately I'm doing my own this week... But by compartmentalising each step, I have so far found them manageable. So you have surgery next week, I think? I wonder if you can try to just prepare for that, ignoring the rest of it for now? I kept busy (harder now in lockdown), went for lots of walks, got my room ready to make it a calm space etc. I also concentrated on the fact that once surgery is done, the tumour has gone, which is a good feeling. The other thing I have tried to do is a tip I learned from my Dad - just take it that 'doctors know best' and put myself in the hands of the professionals. This doesn't come naturally to a sceptical, questionning, nurse like me, but I am much better at coping if I do it.  In the end, we are on this horrible roller coaster and need to hold on tight, however much we want to jump off. Do take care @tennisgirl and you are right, this is a safe space.  Let us know how you are doing, when you feel like it xx ... View more

@Karden so sorry you are having a bad day. There does seem to be so much loss with this, we are bound to resent it and mourn the things we lose. They should all be temporary and we will get through these miserable times. But we are allowed our sad days. Fingers crossed,  tomorrow will be better xx ... View more

Hello all, @grannyp - I totally get the wanting to run away from it all, I get the same thing. As I recall, we share a previous reluctance to have chemo at all, so that probably accounts for at least some of it. But let's face it, we started chemo feeling fine and knowing that we will come out of it feeling ill, exhausted and looking pretty odd... So who can blame our reluctance??  The hair thing is weird and, as you say, different for each of us. I was very upset at the thought of it, then fine and happy to clip most of it. But now I have bald patches and find that quite grim. So I just keep hats and beanies on and don't look. Still have eyebrows and eyelashes but think that, with Docetaxol, I'm likely to lose them all...And it won't be growing back for a while. @Karden thank you for your kind words. Are we the only 2 on here having Docetaxol? I think you are treated by Sheffield two, aren't you? Maybe they just like putting us through it  😁 . My friend in Nottingham had it too, a few years ago. She managed to get through and come out smiling, if bald! Her hair has grown back a beautiful, bright white, she looks great. All the best for this week everyone - especially those having the next dose and those who are home schooling xx ... View more

Hi @BelindaFleur - you are very kind, thank you. I know it's okay to feel rubbish, and I feel lucky to be on this forum where I know that people will really get it. My friends and family are so kind and generous but it must be so boring to hear about my day to day niggles. In fact, I try not to go on about it too much...! So glad you are doing okay and your pharmacy of meds is keeping the sickness at bay. I don't really feel sick, it's more queasy and thinking of certain foods make it worse. I've not been taking metaclopramide, just a couple of times in the evening. Do you think it would work for that? I'm so much better today, I've eaten better and hardly taken any antacids! I'm generally better today - have even been out, fed the donkeys and mucked out the (ex battery) hens - that's what we have, by the way. I have 4 more treatments to go, all being well. I'm lucky not to need radiotherapy, and I've had surgery, so this is hopefully the worst of it over (I have 16 more herceptin injections to go!). I'm having a picc line put in a week on wednesday, hope that will make the treatments easier, although fortunately my veins have coped so far. How many sessions are you having? At least we are 2 down... Take care all - happy to listen to other people's troubles! xx ... View more