Hi @Purpledaze I hope yesterday went well! well done on getting half way through! Lots of love xxx
Hi @Karden Thank you! I do find the ups and downs of this very hard to deal with sometimes. I'm trying to put on a very positive face when my partner and daughter come home from work/school, which to be honest makes me feel alot better. But I do find when I'm alone I tend to dwell on worries about the future particularly at my low point when steriods have stopped. I'm taking anti depressants which do help and I've been trying to keep myself busy as this tends to help distract me. It's so hard the mental strain of it all.
It sounds like you are having a break before you start the radiotherapy - I hope the sun shines for you and it is relaxing. It must have been so hard for you losing your hair twice, I hope it starts growing really soon! lots of love xxx
@Sammy73 Everyone is different and many people are happy to have a bare head or wear hats and scarves which can look so stylish.
However, it was important to me that I look as I normally do as much as is possible and wearing a wig has given me confidence to go out there and get on with life. I might add that I've continued working and that was another reason to look like me - I like to blend in whenever possible.
Again, we're all different and will do what feels right for each of us. x
Thank you, I was sort of ignoring everything about them. But maybe it's time!! Thanks xx
@Sammy73 I bought mine during lockdown when the local wig shops were closed. Google simply wigs at Slaithwaite, Huddersfield.
They have a full returns policy and I have bought two from here and love them.
However, I understand the preference to try on in advance so would suggest asking your breast specialist nurse for details of local shops. My Sheffield hospital provides vouchers of around £75 towards the cost. You will also find that you won't pay VAT due to losing hair for medical reasons. Hope this helps. xx
To all, I wasn't going to do the wig thing but I think I want to now, any recommendations?? Im sure if I scroll through all message I will find something but I really can't be arsed. Lol!! Thanks in advance 💞
❤️I had a reaction on my 2nd docetaxol. I suddenly felt hot and my chest felt tight, the nurses were there in nano second stopping infusion and there was flashing lights in front of my eyes while a nurse very firmly told me to BREATHE, which I did. They then stuck a bag of antihistamine on for about an hour then the doc restarted the infusion 😳 I went back on a fec fir my 6th chemo and others went onto abraxane instead. It does happen but most sail through docetaxol so just go in with open mind. It is gentler in veins than fec ❤️ hope this helps anyone starting their docetaxol 😘💕💕✨✨Shi xx
Hi Sammy73 I would also be very peed off about a delay 😟…especially as we have had to cancel two holidays as they fall on my treatment weeks and can’t change them as everywhere is now booked up .
love to all xx
Hi coastal I was never offered a pic line I don’t know what the difference is with the chemo’s but the nurse has to sit with me for the whole time ! In case of a reaction I was told ,there is usually 2 of us together and she is in between I can see the other ladies with there pic lines and no one is with them , my mix changes after 4 so it will be interesting to see if that’s the same x
@Purpledaze thankyou for your thoughts, I too change chemo regime on Friday from EC to Docetaxel so like you facing another uncertainty!
Take care xxx
Everyone is buzzing in our street at the England footie results. Passed me right by, until I heard our neighbours shouting for joy! I'm not really into football anyway, but also suspect my mind is dwelling on the fact that tomorrow is chemo-day again. It seems to have come round so quickly! I know I should be pleased that I'm getting through the sessions, but I do wish the 'good' days went as slowly as the 'bad' days! Still, I'm doing ok so far I think. Nearly halfway through my treatment, and I've been lucky to have as many good days as bad days so far. I'm feeling nervous about the change of chemo - I've been on EC up to now, but will change to Paclitaxel - and the more frequent sessions (every 2 weeks, instead of every 3 weeks). With all the uncertainty that diagnosis & treatment involves, I find myself clutching to the little things that seem "known" and familiar. But, hey ho, I'm sure Paclitaxel will seem like an old friend before too long 😂
@Coastal sounds like we are on similar treatments - I've got my 4th and final EC tomorrow, and then start Paclitaxel. I hope this cycle for you is less tiring and emotional. The walking you are doing sounds like a really good antidote and hopefully the rain will ease up a bit. I love walking with my dogs, but don't enjoy the muddy / wet dog mess at the end of it on these rainy days, so am hoping for drier weather soon!
@Sammy73 oh how frustrating for you! I hope you can do some extra nice things this week to make up for the delay and to help distract you!
@Michelle21 what a week ahead of you! I hope your session today with the psychologist was helpful for you. It must have been hard to hear that about your Mum. It sounds like you have some good friends who are looking out for you, and that in your walks you have found a small but significant way of keeping sane despite everything that you are going through. Extra hugs to you at this time x
@Poacher65 I will be thinking of you tomorrow, and sending lots of positive thoughts your way for your "D-Day" appointments. You've got this!
I hope everyone else is doing ok - reading all your messages plays a big part in helping me to stay upbeat. Your strength, advice, jokes and tears are a big comfort for me and remind me that the ups and downs I experience are not 'weird' or crazy; and I just wanted to say thank you to you all 🤗🤗🌻
@Love running how has your holiday been? I hope you have had better weather than here in the UK! Do you have any photos of the "Midnight sunshine"? That must be strange but wonderful to see.
I think I agree with your children about cauliflower pizza... I've never tried it, but I don't think it will be high on my list of "must haves" 😂
Macarons, however, are another thing - mmmmmm, delicious. How did you get on with making them? They are complicated, I think, to make?
Over here the rain has mulched my tiny vegetable patch, but we did manage to 'harvest' 40 peas 😂😂 They were very tasty, but not nearly enough!
I had a cooking fest over the weekend as it was my husband's birthday, and he asked me to make lots of his favourite dishes. I really enjoyed it as I was in my "up" period, so appetite was back and taste buds in 'normal' mode. That will change tomorrow as I have chemo again... bleurgh! Also my 4th and last EC - hurrah!
Hope you are doing well x
@Coastal thankyou I will update you all
Take care all of you xxx
@Sammy73 I feel your pain! I’m totally focussed on my end date so if that changes by a week here and there I would be also be really fed up. It so must be frustrating but that’s the problem with all of this we are in the control of others and our bodies do what our bodies do. Hopefully this is the only delay and things will soon be on track for you again.
@Coastal Thanks for your kind words, yes it is a horrible time made even harder. Walking definitely helps me, glad it is helping you too. I hate that steroid low, it’s like a **bleep** cloud hovering over you isn’t it? Fortunately I haven’t had it so much this time I must be on different dose as it is a different treatment, but I remember it from last time and found it really hard.
Just had my second appt with the Psychologist, once again it was an hour of crying but it’s good to get it out.
Love to all xx
@Coastal Thank you for your best wishes. Yes, the 2 separate blocks of chemo have been a challenge, especially losing my hair twice in such a short time but I'm nearly there now.
I start radiotherapy on 27th July for 5 days and then the remaining treatment is Herceptin, letrozole and bisphosphonates.
I'm sorry you're feeling down, it can come along out of nowhere can't it? I guess we just have to accept that it will happen and find ways of dealing with it. It's no surprise though when you think of all that we're going through.
Sending hugs. 🤗🤗🤗
@Sammy73 Oh, that's a real disappointment for you, I completely understand how you must feel. I think we're all looking ahead to what we can plan and when and it takes something like this to knock everything off track. Fingers crossed that your bloods soon recover. 🤞🤞
Hi @Sammy73 argh! I totally understand - that's so annoying. I'm the same I just look to the end date on my calender and want to get there rather extending it. My oncologist warned me that I might have to have some three week gaps rather than two but I have been ok so far. I know what you mean about having to rejig plans - I've got certain nice things planned for my 'good days' but it all goes to pot if chemo dates change. It's my 4th EC next week (cross fingers), so I'll be halfway through too which will feel really good. I hope you can have some side effect free days on your week off! Take care xxx
Hi @Karden wow - you must be so looking forward to having the last chemo this week. You have done so well getting through it all and having to do the chemo in these separate blocks - it's a long haul isn't it. I can imagine having the Pic line out will be amazing too. I don't mind my one much but it's a constant reminder. I hope that all goes as well as possible on Thursday and that side effects are gentle for you. Take care xxx
Hi @coffeeandcake really sorry to hear about your cold! I hope it goes really soon! That's something you don't need to get - I'm waiting to get a cold myself from my daughter at school or partner working in the hospital! So far I've escaped. Maybe its a good thing we are having the chemo in the summer with less illnesses I guess. I had my 3rd Ec too last week, it went okay, just the usual side effects but I think I've just been feeling more tired and down (which I tend to get after the steriods each time). I'm trying to put some more things in the diary for those low times now to make it a bit easier. Hope the MRI goes well, will be really interesting to see what EC can do xxx
Hi @TicTok I totally know what you mean about not being bored going to work! I seem to fill up my days really easily, not sure how I fitted work in and I've now got wimbledon and the tour de france to watch! I've never had time before, so that's a silver lining. I'm sorry to hear about your vein - I really hope they sort this out for you! I can't remember if you have a pic line? that could be a good option - my one hasn't caused any problems yet and I find it quite easy to manage. xxx
Hi @Poacher65 I just wanted to say I hope all goes well with your appointment tomorrow - it sounds really positive that the scan showed the shrinkage but I know that terrified feeling so well. Do take care of yourself and I'm hoping it's as unstressful as possible. Good luck with the next 3 sessions of chemo on the 2nd too - may they be gentle. Lots of love xxx
Hi @Michelle21 Do take care, it must be hard trying to deal emotionally with your own health as well as your dear mum. I hope all goes well with the psychologist and your chemo on Thursday. As you say quite a week. I have had a bit of a down week but went for a walk this morning and I'm seeing a good friend later which will cheer me up. I think you are right trying to get outside every day really makes a difference - even if it is raining! Lot of love to you and take care xxx
So I was due to have my Last EC tomorrow and that would mean I was halfway through my chemo!! But my bloods are too low!! So postponed for a week!! Really pissed off as any So called plans will be now regiged!!
Hey ho. Roll on next week!!
It's strange how our minds work!! I should take it as another week off but it means another week of everything.
Hope your all doing well?
Michelle21…. I dread to think what they will look like after 8 , I like to have it in my left hand as I think in my head that it’s going to hit Boris full on first 👹….I think I will have to change tactics and sneak up from the right now .
karden …congratulations on coming to the end of your chemo I hope all goes well for you 👍
love to all you ladies x
@TicTok @Sorry to hear your veins are suffering. I had the same as can only use my left arm so when I went in to weekly chemo I had a picc line put in and have to say it does help with the veins. My arm still aches a bit but is better than it would have been.
@coffeeandcake getting a cold is really bad luck, although they have said now the general population are mixing more there are more germs about. I think it is common to have a midway scan. I had one after 3 chemo. Mine only showed a small reduction but I am now on a different regime. Is yours changing after your scan? Fingers crossed your tumour is responding well.
@Karden you must be so relieved at coming to the end of chemo, especially as you have had surgery. Will you have radiotherapy next or is treatment finished for you? I’m so pleased for you. I’m already looking forward to that first picc line free shower and I have 9weeks to go!
I have an appt with the psychologist again tomorrow, bloods on Wednesday and carboplatin chemo on Thursday so quite a week. It will be good to tick off another carboplatin (no2 of 4). I hope that it runs as smoothly as the last 3 weeks have. I feel more tired than normal but not exhausted. @noodledoodle you must be starting carboplatin soon, I hope it goes well.
We went to Bournemouth to see my parents again. Mum had deteriorated further and we have been told it won’t be long now. I am upset but feel a bit like I won’t fully process losing mum until I am the other side of treatment. It’s too much to absorb it all.
This morning I went for a lovely walk around some woods with a friend. I walk everyday and it is my lifeline, I feel so much better after it. and a double bonus it didn’t rain.
I hope everyone is feeling well and ticking off those treatments. X
@coffeeandcake Oh no, having a cold and blocked sinuses is bad luck, I hope it clears up soon.
Fingers crossed that the MRI will show some reduction in the size of the tumour. What's next for you, more chemo or surgery?
I am off to the hospital this morning for chemo bloods and Covid test before my last chemo on Thursday. I will have had a total of 8 in 2 separate blocks of 4 with a lumpectomy in between. I'm also looking forward to having the PICC line removed on the same day. The first shower without it will be bliss!
I also hope that everyone has had a reasonably good weekend. x
jusy checking in really to say hi and hope you’ve all had good weekends.
I had my 3rd round fo EC this week and have since come down with a heavy cold and blocked sinuses.... now feeling sorry for myself! No temperature though which is good.
how is everyone else doing? My oncologist requested a new MRI after only 3 rounds of chemo which seems really soon but I’m interested to see what effect the chemo has had so far. Roll on Friday!
Hi all you ladies I don’t know where this last week went , thought I would be bored not going to work , but it’s not the case , I had to go and get my 1st chemo vein checked out as it really swollen up and It felt like a stiff elastic band that I could twang down to my wrist , but apparently it’s the chemo wrecking my veins but at least that was normal .
poacher 65 I hope all goes well for you next week
have a lovely weekend all you ladies xx
@Poacher65 I get what you are saying about the 30th feeling like D DAY. It is terrifying, I have to try really hard not to let the fear take over, I try to stay rational and away from Dr Google! Remember more women survive it than don’t and hold on to the fact you are only halfway through treatment and already you have positive results and now the treatment will change and hopefully attack from another side.
I hope you have good appts on 30th and that 2nd goes smoothly for you xx
@Michelle21 I start next 3 sessions of Doecetaxal on 2nd July if all well with bloods on 30th June.
Also have appointments with surgeon and oncologist on 30th June so feels a little like D -day where I plan next steps and evaluate things more formally at the half way stage.
To say I'm terrified is an understatement but trying to remain positive that my Scan showed a response in the shrinkage and fragmentation at to half way point of my planned chemo.
I will update everyone.
I take great strength from all of you who post on here and read all posts even if I don't always comment or reply ....you are all in my thoughts.
Take care xx
Hi how is everyone doing? I hope everything is running as smoothly as it can be and with minimal SE’s.
@Karden it must have been so hard to find you had to have more chemo and lose your hair for a second time. It’s easy to be flippant and say it’ll grow back but when in this situation it means so much more than just losing hair. Our hair is part of who we are and how we present ourselves to the world and having lost it once it must have felt like going backwards. However like you say the big picture is hopefully a life without cancer in it and if this is what it takes then we have no choice but to go through this. It’s hard but soon we will all be on the road to recovery.
@Poacher65 When do you start with Docetaxol? Good luck I hope it is ok for you.
@Love running how were your midsummer celebrations? I hope you are enjoying your break away and your ‘spa’ treatment. I had my spa this morning, it is nice to have the plaster off for a few minutes. Your description of other peoples reaction to cancer was so accurate and well written. I think we all have those shower and sunglasses moments.
Cauliflower pizza?! I’m with your kids on that one! 😂 Since being diagnosed our family have gone for a predominantly plant based diet and I have enjoyed cooking and eating lots of new recipes. Although I am not a very good vegan as I am having a fillet steak every week! It is medicinal though, as the carboplatins that I have 3 weekly commonly cause anaemia so the steak is my effort at trying to combat that. We will see if it works. I am also having iron tablets and weetabix every morning.
Most Brits can’t criticise other nations for not speaking another language as we tend to rely on others speaking English!😂
@Coastal I’m sorry to hear you have been feeling poorly and low, you have a lot to deal with at the moment. Glad you are feeling better and that the LGFB course helped. I hope your daughters exams went well.
I did the moving forward course last time and it was very helpful and as a group we have all kept in contact and meet up regularly, well we did before the pandemic! I recommend it.
We went to my parents at the weekend, mum was in bed the whole time but I don’t seem to stop when I’m there. It is very tiring and emotionally draining but I don’t think she has much longer so we will go back again this weekend so I can spend as much time with her as possible.
On a lighter note I enjoyed my birthday on Monday. My husband booked lunch at a restaurant in Swansea that overlooks the beach. There were a few paddleboarders and swimmers in the sea to watch and although it was a bit breezy it was just about warm enough to sit outside. I find it calming being by the sea. In the evening my husband, daughter and I did Jay’s quiz from Saturday on YouTube which was fun.
I had my bloods today and have chemo tomorrow. It will be my third of this new weekly regime and so far I feel I am coping ok, although after this one I still have 9 left so a way to go yet.
Sending good vibes to everyone xx
Hi everyone, I haven't posted for a while as have been unwell with the last chemo, nothing drastic just feeling very exhausted and emotionally drained. My daughter has been having exams which she's found really tough and my partner has been having a bit of a emotional time too dealing with it all (his father died last year after a difficult illness and he's been finding it hard seeing me so unwell).
I do feel like I've perked up this week, I saw a really good friend who I had a good laugh with and my sister who I can talk to about my worries. Reading all of your posts always makes me feel more positive that I can cope and I also did the hair and make up workshop with www.lookgoodfeelbetter.co.uk which was great - thanks for recommending @noodledoodle
I've had my third EC so only one more to go before Paclitaxel which feels good. I'm still persevering with cold capping, although only seem to have a thin layer of hair left on my crown and back of head. Luckily the front is still there so I'm going for a fringe with silk scarf look at the moment!
@Love running have a wonderful time away! I hope everyone is having a good week, looks like it's going to be sunny 🌞
Lots of love Nicki xxx
Love running ….. I hope you have a lovely holiday and have those bubbles and any thing else you fancy you deserve it …..have fun with your family xxx
I am one of the few French wanting to speak another language than French, this is why I needed to go on exile in Sweden. I probably won’t be allow back in France 😂😂😂😂.
@Purpledaze the pesto is terrific, but the kids prefer the bought one (the taste of conservatives and sugar I suppose)
It seems that you and I are alike. I have also picked up cooking and baking since chemo. I have the time to try new things. The kids complain because there are so much more veggies now in the dishes. I made them tried a cauliflower pizza which was ranked the worst pizza in history😂. But they happily comply eating the home grown salads.
It is funny because at least for one week following chemo, my taste is rubbish. Everything tastes metallic and I don’t enjoy anything. So I am cooking blind too…
Now on holidays, I promised the girls to give a try for macarons. I never wanted to try as it is very hard to get them right and so much easier to buy them and I can’t match the lavender, fleur d’oranger, pistachio flavor, But I will give it a shot. I will let you know how it turns out.
I might try some bubbly this week to celebrate the end of my 4 EC - probably will be drunk with half a glass🤣
@Karden I hope you had a cozy night out and in with your daughter and that you felt comfortable without your wig with her. I know exactly how you feel about not wanting her or others to see you as cancer sufferer. I am the same person regardless the bc. I don’t want my kids to be more affected than they already are. I am their mum and I want to protect. So I put up a smile most of the time and sunglasses on too. The sunglasses hide the tears that come often up when I get emotional watching them and wondering whether I will ever get cancer free, how will I be after, and what if…
People have also told me that I am strong and if any I am the one that can beat this. I surely hope so, but no one knows. I don’t know that. Sometimes it makes me angry because I make it easier around me for everyone to cope by putting a smile and the sunglasses. On the other hand, I am not sure I could cope with the awkward moments when you share the uncertainties, the pain, the fear… and with the usual answer, ‘but you need to stay positive, you are doing great, you have the kids to fight for, it will soon be over, there has been progress and good prognosis, I have a friend/a cousin that went through the same and she is fine now’… ‘. Easy to say to stay positive, when you have no choice than fight. So I do cry a lot in the shower and behind my sunglasses.
and I write in my journal, or I guess I scream in my journal.
Good morning everyone,
I am now in the north of Sweden ready for my 2 weeks holiday and for celebrating the longest day of the year. Unfortunately the weather is on the chilly side… only 15 degrees and the forecast is rain but never mind, I am away from the city and from any treatment except my picc line spa this afternoon. As every week, I am so looking forward to having 5-10 min without the plaster on my arm. I am fortunate as I found a medical center here that agreed to give the spa treatment today and next Monday.
I will try to take a picture late at night to show you how bright it is and to share with you some of the beauty here. Unfortunately as it is grey, you won’t see the sun at the horizon. Last year was magical, with a splendid weather. If Sweden is on your bucket list for after COVID and after BC, and if your travel takes you through Stockholm, I will be happy to guide through the city.
Glad midsummer allihopa
Karden yes please do …. Glad to here the cancer was reduced some what , that also gives us hope xx
@TicTok Yes, I think we will all worry about the future but we need to keep it in perspective as many women go on to have a long cancer-free life. However, at this stage we need to listen to the experts and make decisions that are right for us.
In my case the chemo was done first to shrink the tumour so that I could have a lumpectomy rather than a mastectomy so it did it's job. Again, it depends on the type and location of the tumour.
There's a Moving Forward course that you can sign up for to help you move on after active treatment, I might do that. I'll find the link and put it on here. ❤️
Karden ..omg you poor thing after going all through that to more or less go through it all again so soon 🥲, I am sure it was devastating,I think that’s what scares me the most I have it nodes and the thought of it turning up later somewhere else scares the hell out of me , that’s why they are doing my chemo first I have 30ml calcification around my 14 ml cancer …..sure like you say we have to do everything we are told to stop it at all costs ….. xxx
Hi @TicTok I am on a clinical trial named ROSCO and have HER2+. No spread to any lymph nodes. The tumour was 2.5cm.
The treatment plan was 4x Docetaxel, cyclophosphamide, petjeta with 18cycles of Herceptin.
I then had an MRI scan which showed that the tumour had reduced to 5mm. They did 6 biopsies that showed no live cancer cells so at this stage I was told no more chemo required.
I had a lumpectomy and 7 lymph nodes removed 6 weeks after the 4th chemo and lymph nodes still clear. However, due to the tumour not having gone completely after chemo, my oncologist explained that there could be a breakaway cancer cell somewhere in my body and it would be too small to show up on any scan. She advised me to have follow up treatment of 4x FEC to reduce the risk of a possibility of a cance cell activating at some time in the future.
This is why there was a break of 13 weeks between the 2 phases chemo.
To say I was disappointed was an understatement and I know it sounds vain but I really hated losing my hair for the second time in 5months as it was a sign of moving forward and this felt like a step back.
I knew though that I needed to follow the advice as I would always blame myself if there's a recurrence and I haven't done everything to reduce the chances.
I am on a different treatment path to many others but I hope the outcome of the trial will help others in the future.
Hi @Poacher65 my first 4 chemo cycles were Docetaxel, pertuzamab, cyclophosphamide and Herceptin. I found it no worse or better than the FEC I'm having now - just different. My side-effects were hair loss again, mouth ulcers, diarrhoea, loss of taste, hair loss, weakened nails and some fatigue but nothing drastic.
On FEC, I now have more pronounced fatigue, but specially on Days 3-5 to mild constipation, nausea in first week and weakened nails
As we know, everyone is different so go with the flow and treat the side-effects with whatever your medical team advise.
Wishing you all the best xx
@Michelle21 it's funny I don't have much issue with aches and pains, more lightheaded and so tired and emotional!
Thanks for your wisdom, you strike me as a very strong lady xxx
Karden Hi karden you had a long break in between chemo’s why was it so long ? That must have been devastating for you 😢…. I don’t get how my hair was falling out but I have stubble all over my head 🤔I thought it would fall out from the root , strange it changes colour also . I hope you have had a lovely day with your daughter and enjoying your evening …..you are a very strong person let’s all stay positive I know it is very hard for us all at times .
love to you all xxx
@Poacher65 I used to struggle after the injection but this time haven’t found them so bad, my specialist nurse said they have changed the brand they used in 2018 and they find people get less achey with it. Maybe you could mention it to your team?
Ive recently moved onto weekly paclitaxel and completely messed up the injections last week, I was supposed to have 3 but only had one. I was really pleased to find out that my bloods came back really well. I will be having all 3 this week! X
Poacher ❤️ Everyone is different on docetaxol, but like everyone is different on any of the Chemo’s. Just do as you have been ticking them off one at a time ❤️ If you have a reaction, it has happened to quite a few of us on here, some first infusion and like me it was 2nd infusion. Remember your team have seen it all before if you do and know what to do immediately, I won’t lie though, I was 😳 and didn’t want another one as they restarted the infusion 😳 everything in my body was telling me to leg it, but I sat there and did it. My onc put me back on fec for my last chemo and others have been switched to abraxane. It is never a one size fits all though if you don’t get on with docetaxol and your team will tailor your treatments to you if it happens and it is a big, lots sail through docetaxol easier than fec ❤️ Epsom salt bath if you get the vice like pain in bones from docetaxol has helped lots over the years and tip passed down the threads. Also udderly smooth with extra urea cream from amazon has been a skin saver when the docetaxol drys skin out, it moisturises really well snd another tip passed down the threads ❤️💕💕✨✨Shi xx
Thank-you for this. I have been told by the nurses that nausea is less which will be great. I only have to take steroids on the day before, day of chemo then the day after....no antisickness meds or anything which makes me a little nervous.
I do have lots left though so I will take them if I feel sick.
It's the GCSF injections that cripple me but I do know they are helping me not get sick until my body recovers.
Thanks again xxx