Breast Cancer Now Forum

Hi Love Running and everyone, Thanks for asking. Things haven’t been good with me. I just didn’t recover emotionally from my 3rd cycle and have been depressed and very anxious. It has been really tough. I wake up really early which is torture. My GP has been really supportive and I am now on various anti anxiety medications. Today is the first day I have felt better. I just hope it continues......Round 4 starts tomorrow 😬 I am glad that you all generally seem to be doing well. I am dreading this cycle as the previous 3 have been so tough but they have reduced my dose again so you never know, I have to be hopeful. Best of luck to you all  Lindsay ... View more

Hi Love Running  I hope it’s ok if I chat here in the may group too, I have had 3 cycles so far, I started end March. I have been very low and anxious and in a dark place about the future too. It’s really hard to get out of. My GP gave me medication for a few days which helped but I am going to ask about long term antidepressants as it’s getting worse and I need to not be at rock bottom to cope.  I know what you mean, it’s so hard to be there for your children. They deserve our time and love and I have less to give which makes me feel guilty and terrible.  Vulnerable and broken just about sums it up. I am probably not helping but at least you know you’re not alone.  lindsay x ... View more

Hi Everyone, I hope you’re all doing well. I’m sure some of you out there struggling right now and I just hope you get through it as soon as you can. This is such a tough time, way worse than I ever expected. I have just come through my third cycle. I suppose it wasn’t as bad as the first two but when I was in the middle of it, it still felt pretty horrendous. I was less nauseous but just so exhausted that I could barely move, yet I couldn’t settle to doing nothing. It’s a unique new form of torture. Does anyone else find this? I am really struggling with the fact that I’m going to have to do this three more times. I’m normally so positive but I’m finding this really hard. I’m halfway now And I just hope that somehow I find some positivity to get me through the second half. I now have almost 2 weeks before the next treatment which I will try and make the most of it and enjoy with my family. I am still feeling traumatised by how awful each cycle is and struggling to just move on.  Apart from watching tv, how do you get through the awful days? I hate waking at 6am and knowing I have until 10pm to be awake and feel awful. It feels like forever.  I can’t really eat much during the bad week so top tips are frozen tropical  smoothie mixes from M&S and Complan. That was all I could eat and still lost half a stone but it got me through.  Also I had really bad anxiety this time and the GP prescribed medication which helped with that and it also helped me to sleep. All other top tips would be gratefully received!  Best wishes  Lindsay ... View more

Hi everyone  @cookie365 oh no poor you! Thank goodness you went in. It just shows that as soon as there is sign of infection, you have to call the emergency number. I was admitted for 5 days after my first cycle with similar neutrophil levels and they sorted me right out so I keep such an eye on my temperature now. I know what you mean about feeling a wuss but after 2 horrendous cycles, I can’t be brave anymore. I had a good discussion with my oncologist who has given me steroids and aprepitant for longer to see if that helps and my GP has put me in touch with the District Nurse who can and deliver injections if needed so at least I feel there’s a plan in place. Also we moved the chemo day so my absolute worst time won’t fall on the weekend when it’s harder to get specialist help. 🤞🤞🤞 @Michelle21 I love the idea of buying the toilet rolls to see you to the end of the chemo! I wonder if we could come up with any other good ideas. It’s hard to plan much if you have more treatment after the chemo (I have surgery then radiotherapy then continued herceptin) but if it works out, we will go down and stay with family in the new forest in August.  @KirstyG  it sounds like you had a really tough scary time. I hope they got to the bottom of it. Lots of love to you brave ladies, we’ll get there.... Lindsay xx ... View more

Hi everyone  Cookie, definitely call the emergency number, you’ll need antibiotics. I totally get the desperation and I hope they can help you with the SEs straightaway. As it’s a bank holiday, you’ll probably get directed to A&E which is a pain but they’ll sort you out. And then let your oncologist know so he/she can consider your next cycle. I emailed my oncologist’s secretary who kindly fixed up an appointment for us to review my next cycle. Michelle, I hope you manage ok today as it’s a bad day for you.  I am finally through the hideousness and trying to just enjoy the weekend although cancer and chemo are never far from my mind. I have 8 more good days that I really want to enjoy. I am going to work from home this week and see a few friends and family.  I am really thinking of you all and hoping things improve as I totally understand the desperation xx ... View more

Hi ladies  Pips, I am so sorry that you had such a bad time in your first round. It sounds awful. I totally relate to the complete meltdown after two weeks of nausea, it is just unbearable isn’t it? That’s good that you manage to totally change your chemo regime. How did that happen? I’ve had such a bad time in my first two cycles that I would love to change mine and I will ask the oncologists if it’s possible but I just wondered how the process worked? Did your oncologist say that weekly is just as good as your previous regime? Cookie, sorry to hear that you’re not sleeping well on the steroids. I found that in my first cycle and actually asked for sleeping tablets for three days just to get me through that time and they did really help. I didn’t have any side-effects from them and woke up pretty early and wide-awake so would recommend them. Sorry to hear that your port isn’t going well. What happened? I had one fitted and I’ve had no problems at all. It was sore to begin with, just bruising in the local area, but it’s fine nowAnd makes the chemo and blood test so much easier. Michelle and Cookie, I am so sorry that you are going through this again. I’m not quite sure how I would be able to cope with that. Although I’m not quite sure how I’m coping with the first time and yet somehow I am so I suppose we have to find the inner strength in us somehow. I finally came out of the other side on day 10. That is the same as the first cycle. So I suppose the worst case scenario is I will feel absolutely dreadful and not capable of anything for five days. I know it’s worth it to beat the cancer but this is the toughest thing I’ve ever been through. I have never felt so dreadful, constantly nauseous and absolutely exhausted and not able to settle to anything or eat anything. I lost 5 kg in a week. I did keep on drinking plenty of water but was very emotional. 😢😢😢😢 Thanks to everyone for sharing their journeys. I really helps to feel that we are in this together. Best wishes to you all for the weekend, I really hope you’re all feeling okay, although I’m sure that some of you aren’t. All I can say is, the rough times will pass, we will get through them and it will be worth it to come out the other side. Lindsay x ... View more

Hi Michelle  I am on TCHP x 6. I think it’s pretty aggressive as it’s triple positive so 4 drugs each time. Is anyone else on this regime? I am going to ask if there is any alternative as I just don’t think I can cope again although I will if I have to, of course. It’s just so much worse than I ever imagined. Or maybe it’s just how my body is reacting to it. I would love my oncologist to say it’s going to change..... Cookie365, good luck today. It must be so tough going through this again especially as it was so difficult last time  🤗  Good luck to you all this week  Lindsay     ... View more

Dear all I am glad to hear that you’re all doing well. Well, as well as we can be in the circumstances… Lots of treatment going on this week-good luck ladies, I hope it all goes really well.   I am glad to hear that you’re all doing well. Well, as well as we can be in the circumstances… Lots of treatment going on this week-good luck ladies, I hope it all goes really well.   Unfortunately I don’t have good news to report. I’m so fed up and really low. My second cycle has gone as bad as my first. Some of you may remember that I was hospitalised for five days after my first cycle because I was in such a bad way, well after my second I felt even worse. I am now on day eight and still feeling terrible. I feel queasy, nauseous and so exhausted that I couldn’t even contemplate going for a walk. I just hadn’t thought it was going to go on this long. I just don’t know why it’s going so badly for me. I’ve lost lots of weight because I can barely eat although I’m really trying as I know I need to keep my strength up. I have tried all sorts of anti-nausea drugs but nothing seems to do the trick. Is anybody else finding this this hard? Lindsay x ... View more

Morning everyone  I felt good in week 3 of my cycle, thank god, probably helped by the hospital agreeing to reduce my chemo drugs by a quarter and give me stronger anti nausea drugs (aprepetin) for cycle 2. That was yesterday and it all went fine.  I also asked for sleeping tablets as I literally don’t sleep when I am on two doses of steroids a day so they have given me 3 nights worth and I slept well last night. Another improvement! I am worried I might go downhill again this time. I am trying to be positive but it’s a bit of an emotional rollercoaster!  Michelle, I am glad you’re finding week 2&3 not too bad. That’s what I am hoping for this time. I am going to try to do a few hours work from home in those weeks just to keep my hand in there then I don’t feel cut off.  A trip out sounds like a good idea Michelle, to remind yourself there’s a world out there and you can still enjoy it. I might try that too after my second week. Steph, I love your manta! On the bad days, that will be the only positive so I will try it! Bonny, it sounds like you really went through a tough time, poor you. I really hope the strong pain killers do the trick. We shaved my hair as even once it was short, it was all coming out. I am now a patchy grade 2. I am going wig shopping today and am hoping for that just stepped out of the salon look! I am happy being almost bald at home, we’re all used to it but I just want to look normal when I leave the house.  I had a portocath fitted last week which all went really well. I have to be very careful about lifting for a couple of weeks (poor me, no vacuuming!) and it’s still tender and bruised but it made it so much easier yesterday as I have 4 different drugs (triple positive) so it takes a long time. That’s all my news for now. Good luck to you all for a good week! Lindsay Xxx ... View more

Morning everyone  Thanks for your lovely messages. I felt good in week 3 of my cycle, thank god, probably helped by the hospital agreeing to reduce my chemo drugs by a quarter and give me stronger anti nausea drugs (aprepetin). We shaved my hair as even once it was short, it was all coming out. I am now a patchy grade 2. I am going wig shopping today and am hoping for that just stepped out of the salon look too Carrie! I am happy being almost bald at home, we’re all used to it but I just want to look normal when I leave the house.  I also asked for sleeping tablets as I literally don’t sleep when I am on two doses a day so they have given me 3 nights worth and I slept well last night. Another improvement! Julie,? I hope your cycle went well yesterday and recovery this week is ok.  I am worried I might go downhill again this time. I am trying to be positive but it’s a bit of an emotional rollercoaster! Carrie, good luck with the picc line. It will make it a lot easier. I had a portocath fitted last week which all went really well. I have to be very careful about lifting for a couple of weeks (poor me, no vacuuming!) and it’s still tender and bruised but it made it so much easier yesterday. Good luck to you all with your cycles and recoveries this week. There are good days and bad days but we’ll get through it together xxx   ... View more

Hi everyone  It’s so great to read how everyone is doing then we can all help each other. Sorry you’re going through this again Michelle, that’s so annoying.  I am also doing well and enjoying the sunshine. My second 3-weekly chemo cycle starts tomorrow and after my last one was so awful, I am dreading it. But I am training my brain to compartmentalise (I just shout “not now!!” internally) so I enjoy the good days and will deal with the bad when they come. I have been feeling really well in week 3, eating well, sleeping well (although I still wake early) and I even enjoyed a couple of glass of rose at the weekend 😁. I also did a few hours of work from home and just loved the chance to be normal. Work are being amazing and totally flexible so I want to repay that by working when I am well.  Bonny, I was achy with the filgastrin too. Do you have any suggestions? I will ask the nurses tomorrow.  I have plucked up the courage to see a couple of friends and it was lovely. I feel brave enough to face people now. I have shaved my hair to grade 3 and even that is very patchy 😬. I am hoping to select a wig with the Macmillan hairdresser on Wednesday so I can feel a bit more like me as I had long red hair before.  Does anyone have trouble sleeping from the steroids? I literally can’t sleep after a couple of days on them and I wondered if anyone had experienced this and been given any suggestions? Lx   ... View more

Hi Everyone  Thanks for welcoming me to the group. I am feeling so much better than last week, thank god. I saw the oncologist registrar today and they are going to reduce the chemo dose by a quarter and also up the strength of the anti nausea drugs so 🤞🤞 for next week. The lovely Macmillan hairdresser at my hospital cut my hair really short today. It wasn’t too traumatic although when I go to a grade 2 next week, it might be! I have red hair so it’s tricky to colour match the wigs but she is on the hunt. I thought I would be ok with scarves but I just feel more me with hair so will go ahead with a wig for when I go out.  I am having a portocath fitted on Friday. Does anyone else have one? I am covered in bruises from the cannulas so hopefully it will work well. I hope you’re all managing ok. Are you all seeing friends? I have been a bit unsure about seeing everyone. I feel different and don’t know how it will be or how I will cope. It’s all so new and unknown for us all..... Lx ... View more

Hi, I hope you don’t mind if I join this forum as well as March.,I had my first cycle on 30th & 31st March so I kind of fit into both and it’s nice to get to know more ladies going through the same thing to help us all along.  I will read through your stories to get to know you. I was diagnosed in February with triple positive BC so am having 6-8 cycles of TCHP chemo then lumpectomy then radiotherapy then hormone therapy. My first cycle didn’t go well, I ended up staying in hospital for 5 days with neutropenia and a possible infection. I have never felt so dreadful so am really hoping they adjust the dosage next week.... I am shaving my hair off this week as I also can’t bear the disappointment of it gradually falling out. After feeling so bad, I am not really too worried about this now!  I will stop there as I could go on and on.... it will be nice to get to know you all, Lindsay x ... View more

Dear all  Good news! My neutrophil count is fine now and I was discharged yesterday feeling so much better. Such a relief to be home and me again! 5 days of bed rest along with lots of drugs did me so much good and I am so happy to be feeling ok again.  As you say Elaine, my oncologist will surely adjust the second cycle as I can’t go through that again! I am seeing her on Wednesday so not long to wait. How long are tastebuds affected? I can still only drink water and some things taste really odd still.  Thanks for your support everyone, Lindsay x ... View more

Apologies for the typos and odd phrasing in my previous message! I am using dictation and sometimes it throws a bit of a curveball! Try to use your imagination as to what I might mean .... For example the week lady is the wig lady 😂😂😂 ... View more

Morning all, Unfortunately things got worse for me . I felt increasingly dreadful over the weekend, so much so that I could barely sit up or do anything. My eyesight went back to normal after a few days, that’s interesting that your oncologist and NICE said it can be an on common side-effect Carrie. On Tuesday I called the emergency chemo line I’d been given and they said that I need to increase my anti-nausea meds but as I had a temperature I had to go via A&E. Because I was in such a bad way when I got to hospital, they put me on IV antiemetics, IV antibiotics and IV fluids. They then admitted me and I have been here ever since. Blood test showed that my neuro fill levels were practically non-existent so they have to keep me in until they are at a safe level to go out. They also want to get the blood cultures back from the lab to see whether there is an infection or not before I go. I also developed a horrible lumpy itchy red rash all over my chest and neck so they have given me more steroids and antihistamine and that has helped. I have been on fluids, antiemetics and antibiotics via a drip ever since and I’m feeling so much better now, thank goodness! I’ve been well looked after in hospital in a private room getting lots of rest so it’s really not been too bad. I am just so worried what the next cycle will be like. My oncologist is aware that I’ve been in here and I will meet with her next week to review things I am really hoping that she reduces the chemo dose as I honestly don’t think I can go through this again, it was so hideous. I am glad you’re coming out of the yuck Titch53, and starting to feel yourself again. I am too and it’s such a relief. My tastebuds are affected-I’ve gone off anything sweet and anything I can drink is water, not even my beloved Yorkshire tea. I can cope with that, after feeling so bad the minor side-effects are totally bearable. I’m even feeling okay about losing my hair, after the way I felt. I am meeting with the week lady on Wednesday and I think I will shave it as I’m not sure I’ll be brave enough to cope with the clumps on the pillow. has anyone else signed up for the someone like me service? I have spoken to my volunteer a couple of times and it has been so useful. She is such a lovely lady who went through the same kind of breast cancer resided in the same treatment and has given me so many useful tips more than that just so much kindness and understanding. My best friend has done the 100 km challenge for breast cancer now in March and raised almost £1500. I hope you all stay well lovely ladies. Good luck to anybody starting treatment soon. Best wishes, Lindsay x ... View more

Hello all, Things haven’t been going so well for me. Since Friday, I felt really rough. I feel really weak and totally yuck. I’m usually really positive person but I’m struggling to say anything positive at all at the moment. my sleep has been really affected, I have been awake so much in the night which is like torture but one good thing is that I did sleep better last night now that I have finished the steroids. I’m really hoping that I start to feel better soon. If I don’t, I will give the hospital a call to see if there’s anything they can suggest.   I’m really hoping that I start to feel better soon. If I don’t, I will give the hospital a call to see if there’s anything they can suggest.   One strange side-effect is that my vision has been blurred. This doesn’t seem to be common and I suppose it might be unrelated to the chemo. When I called the emergency chemo number they told me to get it checked out at hospital but to be honest the doctors at the hospital didn’t seem to have any idea why it might be, so suggested I went to the optometrist!  All in all, my first cycle has not got off to a good start. Sorry to moan on, but perhaps some of you might have some tips or have been through something similar. lindsay  ... View more

Hi all  I hope your second cycle continues to go well Elaine. How annoying to miss out on the party but still have the hangover! 😂 Julie, I hope you feel ok with no anti nausea drugs and the injections go ok. I have to start the injections tonight too. I feel really rubbish today unfortunately. I feel nauseous and wobbly, despite the anti nausea drugs. I am prone to constipation at the best of times, so I have been taking plenty of my normal constipation medication to try to relieve things. It wasn’t working... until this morning it really did (so sorry, way too much info!!). So this is probably not helping how I am feeling. Hopefully it will pass as it’s disappointing when I was feeling so well. But there will be good times and bad in this whole process... Best of luck to you all, I hope you get to enjoy your Easter weekend, Lindsay xx   ... View more

Hi, my first cycle has gone really well so far. Far better than I had hoped, although I was advised side effects can appear from day 3. But all I can do is enjoy it while I feel good. I slept terribly last night due to the steroids and my face was a bit flushed but that’s about it at the moment. I was in yesterday and today as I am on TCHP, which is immunotherapy and chemo. How did your first session go Jewels? We cut my hair really short at the weekend as I am not going to cold cap. It looks horrendous from the back so I am avoiding looking! The good thing is that I have 38cm to send off to the little Princess trust, a rare positive at the moment! Hope you’re all doing well. Best wishes  Lindsay     ... View more

Hi Jadaf, I hope your first session goes well. I start the day after you, on Tuesday. There are a few of us starting this month, on the March 2021 thread so please do join us, to share advice, support and understanding. Best wishes  Lindsay ... View more