Breast Cancer Now Forum

Hi Claudia lovely to hear from you 🤗 I get what you mean about having your head down just getting through everything at the moment. And I have a 9 year old too - what moments of profound wisdom they have sometimes! Thanks for reaching out.  Did you start radiotherapy last Friday or is it this Friday coming? Hope it goes/is going well.  I finished radiotherapy mid December, it was fine and just found some fatigue hit me more towards the end of December. I’m sure it’s different for everyone, but hope you get on well with it. I’m going through a kind of post-treatment rollercoaster, processing, reassessment, looking forward (had my first COVID vaccination today!) and gradually building myself up after chemo.  How’s everyone else doing? Much love 💕   ... View more

Nancy, had to laugh about your husband’s comment!!!  That dark humour works for me!  Hope your recovery continues and will be thinking of you for the follow-up appointment 🤗 I’ve found stopping since Boxing Day has really helped me reflect and process what has happened and how battered about I’ve been at times. Useful but emotional. Going to focus on recovery and really nourishing myself in January. Happy New Year everyone xxxxxx ... View more

Hi Amy Merry Christmas to you and your family, hope you managed to feel a bit better for Christmas Day xxxxx so glad you’re seeing some improvements with the physio, that must be a relief. I have heard of cording but didn’t really know what it looked/felt like. I did the exercises they gave me in a leaflet, it isn’t quite as it was before but isn’t bad either and I could hold my arms above my head for radiotherapy. Glad they gave you physio quickly.  I was very nauseous on Carboplatin too, keep pushing for different/additional anti sickness meds if it doesn’t improve, I waited too long. Eventually got the right combo after a few treatments 🙄   Sending you love and strength for the next carbo, keep in touch xxxxx I’m feeling ok overall, my muscles and my bones have felt quite sore over the last week or so, especially my leg and hip bones. From reading up I think it may be late effects from chemo but I see both my oncologists on 4/5th Jan so will ask them. Still get the heavy heavy cloak of tiredness at some point each day, and my scars became more sore after radiotherapy, but I think all that will settle down in time. My hair is approx 1.5 cm long now (and pretty grey!) and is thickening up so provide almost an even coverage. I think my lashes are starting to come back too, but they’re only very short at the moment.  Our children are finally returning to school on 4th Jan, which they’re SO excited about and I’m really looking forward to some proper rest and recovery in Jan. And although it’s scary bursting Out of our ‘bubble’ in some ways, I will enjoy getting some kind of normality, as much as anyone has any at the moment!  take care everyone, look after yourselves, much love  Heather xxxxxxx ... View more

Hi Kitkat Merry Christmas xxx hope you managed to have some nice family time and celebrate your marathon this year.  I know exactly how you feel when you say your body feels 95 - I’ve thought the same as I’ve shuffled down the landing at times this year. It’s scary. I still sometimes look at the stairs and have to brace myself to get the energy, especially if I need to get to my son’s room up another flight 😭 😭 🤣 .  Walks are good, for your body and mind, but listening to your body is also really important. It’s been through a lot, so don’t feel pressure to do more than it can manage at that point xxx little walks may help get things moving too though! 😉 😘 It’s so glam isn’t it, on carbo I veered from diarrhoea to hideous constipation and back again! 😳   let’s hope you get your Covid vaccination soon 🤞 🤞   Love  Heather xxxxxx ... View more

Hi Nancy, how are you my dear? Thinking of you as you hopefully recover from your surgery, resting and sleeping it away. Did you have a drain? Hopefully it might be out by now if you did and hopefully you’ve found a good pillow combination to prop you up so you can sleep 🤞 and hope you found a good painkiller combo. Be kind to yourself, it’s a big op xxx sending you healing thoughts and strength xxxxxxxxx ... View more

Hi everyone How are you all and what’s been happening the last few weeks?  I completed my radiotherapy on Thursday, felt great but surreal to walk out of there for the last time after going daily. I found radiotherapy fine, it was mercifully brief each day and interesting to be part of as it’s so precise and specialised. My skin felt itchy driving home after the first session and became a bit red and my breast swollen, but all very bearable and the irritation eased with the Aloe Vera gel I used. I found it a bit uncomfortable sleeping on that side, so swapped positions. Felt like a walk in the park after chemo! I have times where a real heavy tiredness comes over me and I feel I’m dragging myself around, so I rest then, but I’ve been for a good walk each day and can do pretty much everything I need to each day. Went through a bit of an odd ‘I don’t want to do this’ fed up feeling the first day, just didn’t want to be prodded or poked any more and didn’t want to take a step backwards in my recovery after just starting to feel a bit better. It passed though and I was encouraged by my minimal side effects. Would be lovely to hear how you’re all doing.  Take care Heather x   ... View more

Hi Kitkat so nice to hear from you. Well done on your last chemo, not quite celebrations yet I know as you know what you’ve got to get through over the next few weeks. Head down and get through my dear, you can do this.  It’s such a marathon isn’t it? I found only once I was finally feeling a bit better could I really think about it being the last one. Over the last few weeks I’ve finally felt more energy and the nausea has FINALLY eased and I can start to feel a little bit more normal. It’s very reassuring to feel the body getting stronger though after feeling so battered. Yes, radiotherapy starts Monday, thanks for the good luck wishes, not too many expectations really, apart from it being another phase of treatment and most probably the blanket of tiredness which most people say happens. Will let you know how it goes next week after the first few days. How is everyone else doing? Xxxx ... View more

Blimey Nancy, do you want to add anything else into the mix for 2020???! 😳 So hope you’re not in too much pain and that they’re happy for you to continue with your chemo soon. Very glad you’re being well looked after.   Amy, hope you have a good, restful recovery from your mastectomy. I imagine it is a fairly significant surgery physically, with a real emotional factor to try to process too. Amazing to have a view of the Houses of Parliament as an outlook and distraction! Huge hug and well wishes. I went for my radiotherapy planning session this week, was marked, positioned and tattoo’d up ready for the radiotherapy from 30 Nov. Surprised myself by feeling a bit daunted on the morning, think just bracing myself for another phase of this journey and having to go it alone. And kind of didn’t want to be prodded or poked any more, especially as I’ve been so nauseous and not sleeping very well. They were lovely though and I felt fine afterwards. They talked a lot about how many people feel by this stage of treatment and I found it helpful to know it’s normal. The radiographer told me that some of the Macmillan services were back up and running and told me to sign up for the Look Good, Feel Better session, where qualified major cosmetics brand make up artists teach you make up techniques to help with things like brows especially, but also to rebuild confidence through how you look/feel. You also get a goodie bag of products afterwards. So I’m booked on after lockdown 🤞 am looking forward to it. Also offered me a reflexology/aromatherapy session which I’m going to do. Felt really touched, as I haven’t been able to access anything like that so far.  Take care everyone,  Heather ... View more

Hi Everyone, Glad to hear your updates Sunshine and Kitkat, and that radiotherapy is manageable and going quickly Sunshine. I have it daily for 2 weeks, was due to be 3 but they’ve revised the approach and slightly increased the dose and done it over a shorter period.  Kitkat, I feel for you. It’s such a marathon journey isn’t it, and when you’re feeling rubbish for so much of it and having to do all those horrid injections too, it’s wearing. it’s such a huge amount of toxicity into your body, an onslaught, you have very little relief in between at the moment 😣 . what is the zolendronic acid for? I so hope you can soon enjoy eating and nourish your body again. I’m 3.5 weeks on from last chemo and my mouth is still yuk and I’m still quite nauseous at times, I hope it sorts itself out soon. I reckon in places I’ve got about a centimetre of hair now on my head, still fuzzy, patchy and delicate, but growing. Isn’t growing anywhere else yet though, which is fine mainly (legs etc) but I’m dying for some eyebrows ...! No more treatment planned after radiotherapy 🤞 🤞 so we’ll see. Mine was an aggressive triple negative metaplastic cancer not usually found in the breast, grows fast, so most common time for it to recur apparently is in the first or second year after ... then it gradually reduces and isn’t that common after 5 years. I hope it won’t come back, but it might. I’d like to focus on a new year and make some plans and visit and hug those outside my immediate family that I love and haven’t hugged forever, book a holiday ... but with COVID a lot of that is impossible. It’s a strange feeling. I looked on the map last week and found new places to go for a walk not far away but somewhere I hadn’t been before, the groundhog existence was so intense. It helped, just seeing something new.  COVID is scary, I know so many people who have had it now and it just doesn’t bear thinking of if one of us got it 😱 . Stay safe everyone xxxx We got our children a Nintendo Wii last week, as they’re still off school until Jan and pretty bored, and I’ve been doing a bit of Just Dance with them and bowling, etc. Quite a fun way to gradually try to get a bit of strength and fitness back, esp when it’s raining!!  I had my picc removed on Tuesday btw, very weird, they literally pull it out (all 50cm)! Odd sensation but not painful and when I removed the dressing after 48 hrs it had pretty much completely healed up and hadn’t bled at all. Crazy eh?  Take care everyone and please keep on with the updates. Be kind to yourselves xxxx     ... View more

Hi Sunshine77 how is radiotherapy going? Are you driving yourself there and are you getting any side effects? Hope you’re not finding the daily visits too exhausting and that you get through relatively unscathed.  What are next steps for you once radiotherapy is over? Its so true about the lack of energy reserves, I feel better so want to do lots, then am wiped out the next day! Slow and steady .... I start radiotherapy on 30 Nov, so will be interested to hear all about it. I’ve had peripheral neuropathy come in 2 fingers 2 weeks after chemo finished, it’s not causing much of a prob but they checked me over thoroughly in case it was anything else. Told me how toxic chemo drugs are to the nervous system. Have also had gastroenteritis for a week, so not quite the feeling better trajectory after chemo I was planning, am so sick of feeling sick! 🤢 ah well, hopefully things will improve soon. Hope everyone else is doing ok. Sending you all virtual hugs. Heather   ... View more

Blimey everyone, it’s been an eventful few days For you all, I hadn’t checked for a few days as I‘ve had lots of appointments this week, and so much has happened! 🤦‍ ♀️   Hope everyone is getting through now, KitKat and Amy hope your ok after your chemo and KitKat I send you strength for all those self-injections 😳 you’ll be like a pin-cushion. Hate the filigrastim so more injections on top of that is full on. But hope it does the job with the clot, that must have been a shock. Amy I’m so pleased for you that hopefully your surgery will be sooner rather than later, I have everything crossed for you, and so glad you enjoyed your weekend away 💙 Claudia sorry to hear about your drama too, but very glad it turned out ok 👍 Big hugs xx Nancy, great news about your surgery too, your timely ‘it will be fine’ mantra and Kitkat’s response made me laugh so much. Can’t imagine how many times I’ve said that recently. Also I agree about people’s projections, I think they’re genuinely full of admiration and just don’t know what to say. My sister said to me ‘I don’t know how you do it (chemo), you’re so brave, I don’t think I could’ I was stunned, as if it’s a choice or bravery!!! 🤯 Tara, it never rains but it pours. Hope you get some results for your son and can have some peace of mind. I’ve found recently I desperately need some calm and peace, easier said than done of course. I do sometimes just shut the bedroom door and everyone knows I just need quiet and time (and often sleep! 😴 😴 😴 ). My oncologist yesterday explained that after chemo and for some time afterwards we just don’t have energy reserves, so it’s really important to follow activity with a period of rest/recovery. And not burst into too much action when we feel a bit better, otherwise we’ll pay for it with more tiredness. The inflammation which radiotherapy causes apparently does the same, your body tells you you’re tired to make you rest so the inflammation can heal. So balance, moderation and self-care ... easy eh?!  i keep dreaming of being in a beautiful beach hut somewhere warm and peaceful and just convalescing! I had my radiotherapy consultation today too and plan is to start in 4 weeks, 10 sessions with slightly higher dose, rather than the planned 15, so that’s good.  Last chemo tomorrow, what a surreal moment walking out of the chemo unit will be ☺️ I know I’ll feel awful for a while, but psychologically that’s huge. Have the outcome of the genetics testing in the afternoon, so 🤞 🤞 🤞 . Oh yes, and if anyone has found anything that helps with the hideous slimy mouth please let me know! 🤢 Hugs to you all, lots of strength for next steps, thanks so much for all your candid honesty, keeps me going. Is such a support on this rollercoaster, I love reading your updates. Heather xxxxx ... View more

Hi Nancy Let us know how you get on with your mammogram and scan, thinking of you xxxx Hi Amy, Thinking o Chou as you grit down after your treatment xxxx ... View more

Hi Kitkat nice to hear from you 🤗 It seems to vary dramatically how people fare on EC, so not necessarily harder 🤞 🤞 maybe just different. After the neuropathy you deserve an easier ride! But as I think Nancy 🤔 said, if we feel this rotten think what it’s doing to the tumour!  Children’s perspectives on life can be a fab distraction. I was feeling guilty as my kids can’t go to school and see their friends, and they Zoom in sometimes and see their friends having fun together. I was telling my daughter (she’s just 6) that I was sorry about all that the other day, she shrugged and said, ‘I think you’re doing us a favour, I love being at home and chilling out, think I’m going to keep on home-schooling!’  Made me smile 😊   My son likes stroking my Little bit of fuzz on my head too and calls it my baby hair. God knows what it will grow back like, it’s very white at the moment 😬 Good luck on your EC next week xxxx yes, I’m 3 weekly and last dose next week if all goes to plan 🤞 🤞 outcome of genetics testing too and my first radiotherapy Consultation, as well as normal bloods, so busy week leading up to chemo Thurs. Work have been sending me lots of emails and trying to draw me in, as if I have the headspace for that on top of everything else, and throw in home-schooling too 🙄 blimey! Happy weekend everyone, keep going  Heather xxxx ... View more

Hi Nancy and Kitkat Nancy - I was the same last week, I cried lots and was just so fed up of it all! Round 4 with Docetaxel was physically the toughest so far for me, this last round (5) was a bit easier physically after the oncologist made adjustments to the chemo and supporting drugs, but emotionally I think I’d just hit a bit of a wall. Battered is the right description! But I feel much better now and can feel some strength coming back.  Kitkat - it’s so true, the side effects are just like a grim list sometimes aren’t they? I had 7 injections this time and by the end of those I felt sick to my stomach for 3 days and my bones ached, stomach swollen and sore, that’s after the initial glamorous chemo side effects that you listed .... 🤢 There’s a stage where I know I have no sense of humour at all, no capacity for it, just gritting through, then I gradually can start to ‘suck it up’ a bit and come slowly back. I’m on my appointment-free and feeling gradually better week, what a relief it is. Look after yourself xxx hugs Heather xxx ... View more

Hi Amy thank you so much, that’s such a kind offer. I’ll pass it on and let you know, thanks again 🤗 I can imagine how you feel about the surgery, wanting to get it done but also being daunted. I also don’t know how it works in the middle of chemo, so will be interesting to see what your oncologist and surgeon recommend.  Have a lovely birthday weekend away with your boy 💙 it must be super hard to reign your mind in, but a change of scene and an exciting birthday for him will be a lovely distraction. And you’ll hopefully have some clarity on next steps by then 🤞 .  I went for the longest walk I’ve done for ages today with my children and parents, I’d never have believed a week ago I could have done it but I did. It was so funny, we went through every season, sunshine, rain, biting cold wind, even hailstones, then a rainbow, but it felt so good to do something a bit normal, not think about cancer or treatment.  take care, Heather xxx   ... View more

Hi Claudia Glad you’ve done ok on Docetaxel, the mouth is grim isn’t it 🤢 I won’t miss that at the end of all this! I hope you get a volunteer assigned soon. I’ve had 2 so far matching firstly my very rare subtype of cancer and the second had 2 children the same ages as mine when she went through the same treatment. They have both been so brilliant, it’s an amazing scheme which really helps. I’ve just recommended it to a friend of a friend this weekend, who has just had a baby and found a lump whilst breast-feeding, it turned out to be secondary breast cancer with the primary in her liver 😔 I found being able to talk to a normal person who fully gets it, but doesn’t bring any emotional attachment/baggage to deal with invaluable. How is everyone else doing? Would be really nice to hear how you’re getting on or just a little hello 😊 Hugs, Heather xxx ... View more

Hi everyone, yes, I completely agree with you Tara, always ring the Acute line with any side effects promptly and talk it through for your individual circumstances. All of our cases are unique. I left it far too long last cycle in hindsight (it’s a wonderful thing!) as I’d been told by my oncologist to expect diarrhoea and pain I just suffered it for 10 days. Too stoic. Then was told at the consultation this week I’d left it far too long before calling the line and could have been very dangerous 🤦‍ ♀️ . Felt so upset, the day after having to have my PICC line removed and re-threaded as it had moved too! the oncologist reduced my chemo dose by approx 20% as that reaction was apparently too extreme, along with increasing the meds to combat side effects, including diarrhoea if needed. Was v scared this reduction In chemo would affect my treatment and prognosis, but was assured the chemo would still be effective. So far so good since Thursday, we’ll see how it goes.  Congrats on last chemo Tara, amazing milestone! Hope you’re ok with the injections. I have 7 this time rather than the 5 I’ve had before. Butler, how are you feeling now? Xxx Everyone else, big hugs and keep going xxx ... View more

Hi Helen, sorry to hear you’ve suffered with Docetaxel too, but also glad we can talk about it and don’t feel alone with it. It took me about 10 days to feel better, but didn’t see improvements in my stomach until I started taking Imodium and diarolyte on around day 10/11 On the advice of my community nurse. I will do that a lot earlier next time, but am also going to get more anti-nausea meds. Baths helped with the pain a bit, was comforting. The mouth is awful, I did find chewing peppermint chewing gum helped a bit, even if just taking the taste away for a while. I’m now on day 15 and feel good, I managed a big clear out with my mother in law yesterday, sorting out the house and toys which was long overdue. Was cathartic! Hopefully you will pick up soon too, and it’s such a huge relief when you do!  but please ring the Acute line for advice too, as I’d do that a lot sooner next time if it was as bad.  Thanks Shi for all of your advice. Enjoy the sunshine everyone and keep going! Heather xxx   ... View more

Hi everyone It has been quiet on here for a while hasn’t it? The effect of chemo accumulates I suppose, so we’re all just getting through. Really nice to hear from everyone though and hear how you’re all doing. KitKat, your day out in the Lakes sounds lovely. Hope the Peripheral neuropathy doesn’t cause you too much discomfort, has anyone else had that yet? My nail beds felt very sore this time but that’s it so far. Amy, I’m so happy for you about the shrinkage of the secondary 🤗 . Let’s hope you can get clarification about surgery soon, push hard for what you want. Keep us updated xxx I experienced a lot of pain in my legs, hips and back after my first cycle of Doxetaxol, terrible diarrhoea and upset stomach and more nausea than previous cycles. I thought I had quite a high pain threshold but found that bone pain hard to cope with, even taking paracetamol and ibuprofen. And I had diarrhoea for 10 days ... 😱 I think because I’d been told I would have pain and likely diarrhoea I just suffered it, but my district nurse this week also said that I should not suffer like that again, to ask my oncologist for more painkillers and more anti-sickness and when to take Imodium/dioralyte to help the diarrhoea, otherwise I am not getting the nutrients I need from my food which my body really needs during chemo. She also said ‘you don’t get any medals for being brave through chemo, it’s horrible, get the drugs you need to get rid of as many side effects as possible!’  So I will take that advice I think and hopefully it won’t be as hard going for as long next time. I didn’t write on here Because I didn’t want to put a downer on anyone else who is due to have Doxetaxol, but I also now realise how individual the side effects are - everyone’s reactions are different. I feel like an injured animal sometimes with chemo, I kind of withdraw into a cave and lick my wounds, emerging when I start to feel a bit better! We have kept our children home from school for now and are home schooling. By the end of the first week, someone in my son’s very small class had tested positive for Covid-19 🤦‍ ♀️ It’s a minefield with chemo isn’t it?  We had lovely birthday celebrations with my 2 children, piñata and pin the tail on the donkey and lots of cake.  Hopefully last chemo for you next week Tara 🙌 🙌 🙌 🙌 🙌 🙌 That must be a good feeling. Still a journey ahead, but a big milestone xxx Big hugs to everyone,  Heather xxxx ... View more

Wow, Nancy, that’s amazing positive stuff!! The fundraising sounds so uplifting, a great focus. What a privilege to have your name on the shirt too, literally carrying you along on her journey (and yours). The video sounds fab too, I don’t think you can underestimate being love-bombed at times like this.  I like your comment about living half of the time in happy denial, I think I do the same and don’t think that’s a bad thing! You can’t change it and is really doesn’t do any of us good to dwell on it all the time. I’ve asked friends to tell me all about what’s happening in their lives and with their families as I love hearing all about them and certainly don’t want to talk about the big C or treatment all the time. It’s refreshing. But I also have certain people I can be brutally honest with (including you ladies) when it’s rubbish. I've just finished my first Doxetaxol infusion, Just about to start Carboplatin,  was super nervous this morning, but feel ok so far. I have my fab positive nurse from last time, makes such a difference. Tara, are you in for Doxetaxol round 2 today? Thinking of you and sending strength 💪 Rest up Nancy and be kind to yourself.  love to all 💕 💕 💕 💕 ... View more