@Sammy73 @Great that you are able to embrace your hair and as you say go with the flow. You’re right our bodies go through so many changes and it can be difficult to adjust to. I am looking at having a double mastectomy and won’t have a rebuild for at least 2 years maybe longer. I am telling myself I will be able to rock my new flat look, I’m tall and thinish. I tried my new found confidence on my daughter yesterday saying I think I’ll rock the new look but I think she found it a step too far when I started comparing myself to Kate Moss, admittedly I had just been complaining about my wobbly tummy. What can I say I’m 50, have had two babies maybe Kate Moss is a push but I’m still staying positive about my ‘new look’ although I’m sure I will have plenty of tears before and after the op.
We will get there. x
@TicTok awww ticktok I can only repeat what I have said to Poacher, these are tough times and this is the place to share. I hope your next cycle goes well and that you are soon feeling more able to cope.
I love that there are so many positive ladies here talking about trips away and living life, when I am down I try to draw on their positivity and hope that I will be able to do the same for others. X
@Poacher65 don’t apologise for your ‘negativity’ that is exactly what this place is for. If you can’t say how you feel here then what’s the point. Yes it probably is completely normal to feel sad for the pain your family are going through but knowing it’s normal doesn’t make it easier. My last cancer was whilst my daughter was going through her a levels and the guilt I felt for ‘putting her through this’ was awful. However it’s not something we have chosen to do and our families know this. Unfortunately there are lots of ups and downs whilst going through this and all I can advise is appreciate and enjoy the ups when you feel them and get through the lows best you can. At the end of treatment you will reflect back on all you have been through and will be amazed by your strength. X
@Love running I'm sure they will be understanding about your vaccine. They must be! Tell them my horror story if you must - that it'll make life easier for everyone involved if you time it better than I did.
Also, yes, Devon will forever be one of my favourite places! Here's a photo of the view I enjoyed for 6 blissful days!
I also wanted to say that I think holding off to tell your mother sounds completely understandable. There is no point in her worrying through this entire (very difficult) process, if it just ends up being more detrimental to the both of you. Coming to her with good news further down the line will, I'm sure, be very appreciated and save her a lot of pain. I think I may have held off telling my parents as well if the prognosis hadn't been so positive from the outset - it was definitely the most difficult conversation I've had with my cancer as I knew it was going to upset them so much.
@Poacher65 I'm so glad that it's doing what it's suppose to do. Hopefully that means that any weird feelings in your breast aren't too stressful now that you've had a positive update. I hope it continues to do all the right things!
I agree - this heat is killing me so I'm glad for a few days of rain and cooler temperatures!
@Michelle21 That's really good to know! I'm thinking of chopping it now. It's just below my shoulders and in the past three days has gone from very thick so scary thin. So at least if it's shorter the hair loss will feel less dramatic that the chunks of longer strands falling out. I'm glad to hear it's in phases - I hope this phase ends really soon!!
I'm glad that the session was at least partially helpful. Sometimes a good solid cry can be cathartic, especially around someone who's not going to spend the whole time trying to get you to stop crying but just listen and empathise. I'm sure a lot more support will be needed but please know that we're all here to help in any small way.
@TicTok I'm so sorry. I'm going through the same as well. 2nd round TC tomorrow and my hair is so thin now - it started super thick three days ago 😞 . I'm worried that it was too thick for the cold cap to even work properly last time and maybe now it's too late. I hope it goes well today for you. Will you let me know what they say about continuing to use the cold cap? I'll probably try the cold cap again tomorrow but will definitely need to take some shears to the ol' coconut very soon. I'm very nervous but I think I'm ready.
@Sammy73 I'm so glad that you're taking the hair loss well. It's still stressing me out but a supportive partner is huge through this. He keeps saying he's going to shave his hair in solidarity but I think that's a terrible idea - we don't both need to look sick! 😂
I hope everyone is feeling as happy as they can this week!
@Michelle21 I had a weird week when my hair started falling out in clumps, its strange because I didn't think it would bother me, but I suddenly felt very vulnerable. I started looking at myself differently and thought why does my partner still love me, my body has changed so much my moods are all over the place!! I had a good talk to myself and this is a nesscary nusiance!!!! All of it!! Ive got to crack on and I don't want to be a wet mess for the whole time. Thankfully I feel stronger 2nd round on EC don't know why but I do.
I walked in to the village butcher yesterday will my spindly hair popping out the back of my hat and the lady was very pleasant to me!! Shes normally an old witch!!! I thought there's something in that. Be proud!! Lol!!
It's shitty at times but we can all do this, sometimes it's a step back to step forward.
I'm going to keep my spindly hair for a bit im quite fond of it and when the time comes I will shave it or not, gonna go with the flow.
Much love x
Michelle21 I have also had my worst week so far 😢everything has come down on me , just want to sob my sox off , my 2nd session today cold cap or not to cold cap 🤔my hair has not gone patchy but quite thin and still coming out in hands full ,I will ask there advice today .
love to all xx
I too had immediate 'need' to get the surgery done first to get the demon out but was also advised chemo first is best for me. So I gave trusted what the team have advised and gone with it.
Had a very tearful couple of days....all suddenly feels very overwhelming and I can't get guilt, sadness and fear to stop dominating the positivity I have had since diagnosis. I suppose this is normal.
I must say I have huge sadness about how this is all affecting my family, my amazing kids and husband and wish I could stop them hurting and worrying.
It's a heavy burden knowing your responsible for such pain....but I keep telling myself that this will get better and I will beat this.
Sorry for the negativity.....I'm trying to be strong like you ladies.
Take care all xxx
@Poacher65 @Congratulaions on your scan, all good news should be celebrated and it is great that your treatment is having the desired effect. Like you say hopefully the next half of treatment it will shrink even more. I am also having chemo as a first treatment and do wish sometimes that I had been able to have surgery first. I think having it still inside my body does mess with my mind but my oncologist says this is the best way for me as I’m sure it is for you. X
@Love running Not an imposter at all! Thanks for sharing your story, you certainly put me to shame with your language skills. I have been learning Spanish for 2 years but seem to forget it all between lessons!
You are right about this forum, I used it 3 years ago and made some amazingly supportive friends who I am still in regular contact with and I have to say I am so grateful that I found this thread as everyone here is so helpful, supportive and inspiring. I love to hear what everyone is doing to get themselves through all of this, it really spurs me on.
Your confession about not telling your mum seems perfectly sensible. As you say when you do see her you will have good news to share.
The longest day celebrations sound amazing and one day I will get to Sweden for my birthday and will certainly look you up for a tour of Stockholm! When I finished treatment last time we did lots of travelling to places we had talked about for a long time, so Sweden is high on the list when I finish this time! X
Thank you everyone for your kinds comments regarding my mum. I went to the psychologist and spent the hour crying as expected but do feel slightly better for it.
I agree it is a very personal thing telling people about your diagnosis. Last time we told everyone but this time I got quite protective about who knows and we have told far fewer people. I guess with the lockdown it has been easier to legitimately avoid people. Although hearing about everyone’s trips and events it dos make me think that perhaps we should see a few more friends now but with what’s happening to mum there isn’t much opportunity.
@noodledoodle I have also had genetic testing as TN. It came back negative which I understand most do. I had mixed feelings as I have 2 daughters, so relieved that I won’t have passed on those genes to them however I think there are targeted drugs that have just been approved for BRACA, I think targeted drugs are a good way forward with cancer.
@Bex27 Glad you made a quick recovery from your vaccination and were able to make a trip to Devon, how lovely to have that time to enjoy with friends. Nice to feel rejuvenated. I have cold capped too. I did it last time and there are pros and cons. When I did it last time I did end up with quite a wide parting, but my hair was longer then now I have a pixie cut and it has worked much better. I have still lost a fair amount of hair but most people wouldn’t notice and I’ve had 3 rounds of FEC. Hair loss dos go in cycles and seems to be worse on the 3rd week. I like that I can walk down the street and no one knows and I don’t have to wear a wig but it is a very individual decision.
Good evening ladies
sounds like there is lots going off in everyone’s life’s glad yo are all doing ok
love running those celebrations in Sweden sound amazing on the 21st .
michelle21 so sorry to here about your mum you certainly have a lot to deal with
bex27 glad you got a lovely holiday in , my hair is also falling out in my hands , I go on Thursday for my 2 nd chemo I also had the cold cap but I don’t think I will bother on Thursday it there is any hair left 😱
poacher65 good news that your demon has shrunk 😀that’s gives us all hope ....
love to all you lovely ladies xxx
Hope as time passes, your week gets better and you can cope with the heat.
It is hard to be indoors when it is nice weather. I find it hard to have long sleeves and pants on when it is warm and try to avoid the sun all the time covered from head to toe with SF50 cream. I also find it challenging.
It is good news that your lump shrunk. All good news are to celebrate and cherish. Today I met my new friend Lin, I met few weeks when getting our infusion the same day, to celebrate that her tumor shrank too and we both went through our 4th and last EC.
take care, keep on fighting, better days are ahead of you.
@Sammy73 Thank you for kind word😘
I totally understand how upsetting it might have been to have your mum taking over your story. It would be the same with my mum and she would make it about her, and her sadness. It happens to me and I wanted to keep the little control I have on the diagnose and the disease.
@Bex27 no but I've had my half way through chemo scan of 'lump...and it's got smaller and fragmented which is what they wanted to see so got to see that as a positive.
3 more chemos to go so hopefully even smaller after that ...God willing!
I hope you are all doing OK...the heat is a challenge for me can't be outside for long which is frustrating when it's so beautiful but never mind.
Take care all....having my rough week post chemo but will feel better soon so keeping positive.
Love to all xx
@Love running its really tricky with telling people, my mum!!!! She lost my step dad last year after suffering from parkinsonism and has been on a roller coaster ever since, weird I had to go through my sister to tell her about my diagnosis!! Filtered and easier for me and my partner to deal with!! She was a mess but felt like it was her news to inform everyone and their wife!!! Honestly it was really quite upsetting but now I have my strong, I can talk or see mum days but it's taken a while, my sister has become a very good buffer.
Enjoy your trip up to the North.
Love that you wanted to be on this 'more open group'
The world is a funny place but we are all in it. X
Thanks for sharing your dramatic adventure with the 2nd dose of Pfizer. It is so good to know. I am so sorry that you ended up in the AE. But glad you are better now. and that you managed to spend your weekend off with your friend in Devon. These moments of normality boost you so much. I am craving them and have been feeding these cravings for a week now. Meeting friends and colleagues outdoors, planning holidays, …
I love Devon, I studied a semester in Bristol and at week-end we used to drive down to Devon and surf. Fond memories of my time as a careless exchange student (almost 30 years ago -😱)
I am hoping to get mine in 3 weeks. I try to time it after my three weeks break when I am supposed to back up on blood level and before I start paclitaxel. It is a bit difficult before you are supposed to wait for the text message you get from the authorities. But I will to call t I plead my case that it needs to be at the tight time.
I cross my fingers that you can have your 5 days holidays. It is such a boost to your mood. The past weekend helped to feel normal and also to go through my 4th and last EC.
Feeling normal, having plans and being able to enjoy the family freely was an amazing feeling. So I am really looking forward to next week and my trip to the north. All logistic have been sorted. Just hoping my body does not fail me this week.
@all: if possible, don’t let your fears get away of planning good things for yourself. May be it has to be cancel at the last minute but if not, it will give a lift in your mood.
I am so sorry to hear about your mum. I can’t imagine how it is possible to deal with both yours and her diagnosis. I hope you get all the help you deserve. If any, we here in the forum will help some.
Since you ask, I am actually French married to a Swede and having kids going to an international school (trilingual by now with English being their first language, then Swedish and then French). Although I speak Swedish, it is my third language and I can’t express myself as well as in it as I do in English. Why not joining a French forum, you might ask. Well I did not find any that was so open and welcoming and where I felt comfortable. Also in general, the website around patient care are better in the UK. The UK has a long tradition of having good patient support network (I work in public health and collaborated a lot with public health England before Brexit). When searching I stumbled on breast cancer now and found the website useful and user friendly. So this is me, a slight imposter😬.
@ all: I hope you ladies are ok with that.
Another confession is that I have not told my mum about me going through breast cancer and chemo. She is manic depressive and getting close to 80. It would have been too hard for her, knowing that she can’t travel here and help me. So I decided to not tell her and use the COVID situation to justify that I can’t travel to France this summer. Also I needed to protect myself, because she would have cried every time on the phone (we speak every day or every second day, especially since COVID) and her depression would be aggravated. The 2 lockdowns have hard on her since she lives alone. Her generation also associate cancer with a death sentence and I could not cope with it.
So I made the conscious choice not to tell until September when my chemo is over, I am fully vaccinated (hopefully in 3 weeks) and I can travel to France to give her more good news than bad news.
I have been fortunate because I managed to speak to her as normal although going through treatment.
On more joyful topic, the 21 st of June, we celebrate midsummer- the longest day of the year. Here it is bigger than Christmas. All Swedes leave to their or their relatives summer house to party (way too much alcohol for my taste but still super fun to watch). I am going to celebrate it in the north where the sun barely goes down. It is unbelievable to sit outside by midnight and it is still daylight then it gets slightly dark (dusk) and by 2 an it is daylight again. I love this time of the year. If you come through Stockholm one day, let me know I could guide through the city.
Take care and lots of hugs
you are more than welcome in this wonderful forum. You can also double dip😜🤫 and join the June one too😀. Get the best of both. It is just there to enjoy.
you are more than welcome in this wonderful forum. You can also double dip😜🤫 and join the June one😀. Get the best of both. It is just there to enjoy.
I'm back! Had a bit of an adventure since my last message. I was doing really well after my first dose, Friday, with just some fatigue and sore mouth, then I had my 2nd Pfizer jab, Tuesday, and ran a temperature on Wednesday. I called the acute oncology, figuring it was just the covid jab side effects, but was told to go to A&E to check it out. They ran my bloods and discovered I was neutropenic so I ended up in hospital for three days. They still figured it was the covid SEs but they couldn't run the risk while I was so vulnerable. I definitely should have taken the advice I had read about taking an overnight bag with me! Luckily my partner was able to bring over some stuff to keep me entertained.
The silver lining is that my neutrophils had recovered completely by the Friday and I was released and told I didn't need to be overly cautious anymore. Which meant I could go down to Devon with a few friends who had planned a trip to a family beach house! We just got back yesterday and I feel better than ever.
It also seems a bit crazy that I was neutropenic and then completely recovered within the first week of the dose! I thought the 2nd week was the danger week. At any rate, whilst I'm a bit annoyed that they didn't consider the timing of the jab to be an issue (I spoke to my oncologist about this) I'm glad that I now know my body's response and I expect the next rounds to go much more smoothly. 2nd one is this Friday!
I did the cold cap as well but my hair started falling out pretty dramatically yesterday so I'm feeling a bit stressed about it. I've got a wig though, so if needed I'll cut it off and see what happens. I think that's been my motto through this whole thing tbh - "I'll just see what happens!". It has been tough to mentally prepare for so many different unknowns along the way but I hope I'm a bit stronger for it.
@Michelle21 and @Baroness welcome! I'm not as active as some of the other women here but everyone is amazing. Michelle, I'm so sorry to hear about everything you're going through. That's too much! I hope the psychologist is helpful and you're able to book in some more sessions.
@Love running That's great you're getting away! My Devon trip was incredibly rejuvenating, even more than I was expecting, so I hope it's the same for you.
@Poacher65 Did you end up speaking with your breast care team about the pain in your breast? Is everything okay? I have had my mastectomy already but I would definitely feel stressed about that too. I hope you were able to get some peace of mind. Also, great analogy for how you feel - I definitely felt hungover too for the first few days!
So sorry to hear about your mum. What a lot to cope with! Whatever happens you will be okay and come out the other side.
Glad to hear your SE aren’t as bad, that’s encouraging. I have one more cycle of EC to do next week and then a couple of week until I start weekly Paclitaxel and Carboplatin
I am also getting genetic testing as my BC is triple negative. Apparently the rules have just changed here and if you are under 60 and triple negative, your oncologist can do a blood test for genetic testing and just refer you to a geneticist if positive. Although not everybody would want it
I should finish my Chemo beginning September, the onto radiotherapy
take care xx
@Baroness @welcome to the group, I’ve only recently joined too and have to say there are a great group of ladies here.
@Love running well done for running through, I know exactly what you mean about your brain being at peace when running. Nothing beats running and listening to your body and just going with it. There isn’t a great deal of encouragement for exercising through chemo here, not that I have found anyway but I have also read articles about it boosting your immune system and reducing risk of infection, even post op. Although I havent continued to run I go for a walk every morning of between 3-6 miles and I live in Wales so there are lots of hills around to get the heart pumping. I go with friends and I find the chatter lifts me up most days and some days we are out all morning. Are you Swedish or living in Sweden? It is a country that is on my list to visit, my birthday is 21st June and I know you celebrate the longest day there so maybe I will go next year.
@noodledoodle my first carboplatin seems to have gone ok, less SE’s than FEC. Although I think going in every week for 12 weeks is going to get draining, especially as it is bloods Wednesday, chemo Thursday. I think you said you are having 9 paclitaxel and I am a cycle ahead so we will probably finish about the same time. I will then have surgery which at this point in time looks like a double mastectomy because of having BC 3 years ago.
I have an appointment with the psychologist at my cancer centre today. The appointment was made a little while ago as I have a lot going on. I was diagnosed in March and around that time my mum became ill. She has been diagnosed with terminal cancer, bowel and ovarian and has been given weeks to live. I am finding it so hard dealing with what I am going through and trying to do what I can for her. Unfortunately she lives 3hours drive away so that adds complications. The psychologist isn’t going to know what’s hit them when I open the floodgates later.
How's everyone else doing? Anyone finding nice things to do in this lovely weather? I hope everyone is coping ok mentally and physically, big hugs to everyone here xx
It sounds like we're at very similar points in our cycles then. My final FEC is on the 24th June, then I move onto Docetaxel with herceptin and Perjeta.
Hi @Baroness not too late at all! I had my second EC on 1st June and am due the third on 22nd June. Can’t believe that will be the last of the first phase, the on to Paclitaxel and Carboplatin!
I've only just discovered this, I hope I'm not too late to join.
I had my first cycle of FEC on 13th May and second on June 3rd.
You sound good and strong, the break sounds great, think thats a great tonic!!
Hope you get your 2 weeks with your man too.
We are hoping for 5 days away in august up to Norfolk, beaches boating. I cant wait, nice to have something to look forward too.
Have a good week x
This time, I managed better the low from the steroids, but as you say, the emotions are all over the place.
Yes, I am hoping to run all the way through chemo. It is hard but when running, my brain is off and not on overdrive😅. I listen to my body and stop when it says enough.
Sometimes I run long stretch (10-12 km) and sometime barely can make 5 km. All at a very low pace. I have lost in speed and distance but it doesn't matter. I enjoy every drop of sweat. Since the surgeries I also run with two bras (feels sometimes running in a corset).
I read a lot about exercising through chemo and after chemo. There are a lot of studies that show positive effects. I am located in Sweden and here it is pretty much encouraged to keep training or to move as much as possible with a minimum of 30 min per day with a higher pulse. With the exception of training indoors and swimming (because of the risk of infections at the PICC line), the oncologist encouraged me to continue all forms of training.
In Sweden, there has not been any curfew or lockdown and I live next to the woods, so I have been able to run/train/walk anytime I wanted to. It is also very popular here, to have outdoor gym (made out of wood to blend in the landscape). There is a good one by where I live. I am going there to do leg press, arm press, back training and sit-ups.
Overall, I believe it helps me stay active and clear my head. But not every day is easy to get the motivation.
I hope you manage your injection. The first time can be a bit stressful. My first time was after my surgery, I had to take blood thinner, and I had an audience. My eldest daughter and my husband, both wanted to look. In a way it helped, as I had to play cool. Apparently, I looked professional.
I also had a bit more fat around my belly by then, and the needle went smoothly in without hurting. I have to day that you should not hesitate too much otherwise it bounces back.
Now I don't think about it anymore and just do.
After my week-end camping, I am back on Movicol looking forward to the serenade.
I am glad it worked for you and that you and your daughter enjoyed the sound effects. I have no shame anymore 😂, it totally disinhibited me.
I have so much salads that we will turn into rabbits😂
The strawberries are turning pink... so I hope that we can taste the first ones this week. My basil is catching up and I am planning to make my own pesto. Never done it before.
My cherry tomatoes are blooming.
Virgin mojito stay on my summer drink list (mainly because my mint is taking over the window seal - it is unbelievable how it grows). I will make an exception in my dry chemo (no a drop of alcohol since I went to surgery) for a small glass of champagne when I am done my 4th and last EC. A small celebration for going through the first bloc of treatment.
Good evening everyone,
I hope you are all doing well.
I have been off line the last couple of days. The weather has been really good over here and since I was feeling well, I took the chance to be 'superactive'. I even organised a short camping week-end with the family for the end of school. The kids are on holidays. It was almost like the life before. My eldest said it was the best week-end ever and my youngest was over the moon. I am so happy I could do it for them, as my disease affects them too, although they don't say anything.
To my fellow runner in this forum, I do manage to run (I thought if I can walk, I should be able to run. Right 🤔). It is hard and sometimes feels like mission impossible. I listen to my body and some days I can do long run and some days there are very short. Today I did a 10 km long run very very slowly (1h10min) but Sunday a week ago, I barely could run 3.5 km. I stop when my body says enough. I have lost in speed, and distance. It doesn't matter as long as I can put my trainers on and get out in the woods. I hope I can keep running all through chemo, as this is the only time when my brain is off and in peace. Training has been keeping me sane so far. It also helped with sleeping at night and the nausea.
Tomorrow I will have my fourth and last EC, after which I have a three weeks break before 12 weeks of paclitaxel. I cross my fingers that my body takes it as well as my third one. If so, I got the green light from my oncologist to go on a 2 week holidays to the North of Sweden to my husband's parents cottage. I am really excited about it. I have managed to book a time at the local medical centre to get my PICC line spa. We will leave the kids for few weeks with my in laws, which we have not seen for one year. They are now fully vaccinated. So it feels safer.
I hope you all also got some sunny and peaceful days. I send you lots of positive vibes and hugs.
Poacher65 … morning I hope your pain and swelling has subsided I am sure all will be fine , please just ring and talk to someone to put your mind at rest , they will get you sorted …. Stay positive and sending you lots of love xxx
@Poacher65 I am sure it’s all perfectly normal. Things seem so much worse when we are anxious. The amount of times I have worried about things which seem huge at the time and then after speaking to the breast care nurses, all anxiety goes out of the window!
Speak to your breast care nurse first thing tomorrow and I am sure they will put your mind at ease.
take care xx
I have definitely felt things going on in my affected breast since treatment. My brain swings from it’s the treatment shrinking it to its growing again! Depending on how irrational I’m feeling.
I guess there is a lot going on inside our bodies at the moment and it is difficult to tell if it is a ‘good pain’ or not. If you are worried I would mention it at your next meeting with your oncologist I’m sure they will be able to put your mind at ease.
Quick question....has any of you had pain in your affected breast post chemo?
The pain I was having pre diagnosis in my affected breast stopped once I started treatment along with the swelling and heat...the main reasons I went to see Consultant....but this time its painful and slightly swollen.
Thanks all....and take care xxx
Hi ladies, im not good at catching up on here, your all so good at replying to each journey, im just saying hi to all and i love that we are all doing this our own ways. On wednesday i had my 2nd EC through my (deaded) picc line, it was great, quick and no fuzzy head like the 1st time, i seem to have more energy and injections started last night with a painkiller (as adviced) no issues!
Is it because i wasnt as anxious this time? Is it cause its topping things up rather then full blown in? God only knows but im hoping for a good calm healthy weekend.
I wish you all the same. Its gonna be hot so hats on ladies ⛱
I too had my 3rd EC yesterday and unlike my first 2 rounds felt the effects during and immediately after my infusions unlike first 2 where I usually felt ok ish until day 3...... so admitted defeat and went to bed early and slept.
Up this morning early and feel a little less overwhelmed but still a bit 'hungover....my only way of describing how the EC has made me feel.
Start my injections...which I hate because of the lightheaded feeling they give me....Sunday so like all of you I count the days down until I finish them.
Start Docetaxel on 2nd July for 3 rounds so anticipate there will be a different set of side effects to deal with.....BUT......im 50% through my treatment plan for chemo and 1 step closer to my surgery so I must moan about the SE's......
Going to have a quiet day today and rest these feelings away hopefully
Take care all you lovely, string, inspirational ladies and talk soon.
'We can do this....in our own way....but we can do this'
Hi all you ladies
coastal ...yes had a good week thanks , ready to start it all again 👍let’s do it .
Karden ....I thought the same with the injections , I think my husband quite enjoyed stabbing me 🤣 but I hardly felt a thing ... did nearly loose one has he took the wrong end off and went down my leg 🙄
Michelle 21 ...so glad to here you are feeling ok , heck of a long day for you though .
I hope all you ladies have a good weekend and take care xx
Hello Lovely Ladies,
A warm welcome to the new joiners - this is such a lovely, supportive group. Even thought I don't write often, it's a comfort knowing this group is here, and there are always lots of good tips and encouragement.
I had my 3rd EC this week - every time seems a bit different: this time it hit me hard on the day - felt absolutely bushwhacked. Then day 2 felt surprisingly ok, but the fatigue is back with a bite today. Oh well, all the more reason to take each day as it comes 🌷
Lovely to hear about people's plans for getting a break / holiday. Whitby is on my list! I've decided to take some days off work end of this month before my 4th chemo. Not got any major plans, but hoping to get in a special dog walk and maybe a day by seaside. 🤞 Also looking forward to seeing some friends who will visit on the "good" weekends.
I have to do the injections over 5 days as well. They don't hurt, and are really easy to do. I was also told to take injection out of fridge 30 mins before using it (not so cold, hurts less). I just don't like self-injecting very much so I think I get wound up more than is strictly necessary 😂 - counting down the 5 days is my mantra and a deep breath at the point of injection - then watching something mindless on Netflix etc - LOL
@Love running I've still got lots of lettuce (surprise!), but the radishes I planted are teeny-tiny - taste good, though! Have you had any of your strawberries yet or still on the virgin mojitos?
Hope everyone has a the best weekend possible x
I have a husband like that, I think he is secretly pleased he isn’t able to come into chemo because of COVID, he can’t stand needles of any kind, I’m surprised he didn’t faint when he had his vaccinations! 😂
@Michelle21 It sounds like you have major decisions to make but you have time to think about it and you will make the right one for you.
I'm pleased your treatment is going well and you're not having any sickness. I'm feeling really tired and mildly nauseous but not too bad overall and it's all manageable.
Keep that October break in your mind and it will be here before you know it.
I start the injections on Monday and will see how I get on as my husband is more nervous than me!!
Take care. xx
Hello all, hope everyone is having a good day.
I’m pleased to report I have had my first of the new regime, so one down 11 to go! More good news despite my oncologist saying it can cause bad sickness I don’t seem to have any sickness. I have taken the same anti sickness meds that I took on FEC but still felt nauseous on FEC but, touch wood, sickness fine. However it didn’t exactly run smoothly yesterday I arrived at 9:15, by 10 still no treatment, but did have reflexology which was lovely. At 10:30 they explained that my bloods had gone to another hospital by mistake and they were waiting for the results. Thankfully they received them at 12 and I left at 3:15, it was a long day especially as I’ll be back again on Thursday, but in the big scheme of things there are worse things that can happen!
@noodledoodle I hope you have similar results with your SE’s from this treatment. Did your oncologist mention the high risk of anaemia and blood transfusion? My oncologist likes to give me the worst case scenario on everything! I’m not looking forward to feeling the fatigue but one day and one cycle at a time. Yes on a plus let’s hope the carboplatins kick our unwanted breast guests out!
I have surgery next and spoke to my oncologist yesterday about a double mastectomy and she said that is definitely an option that needs to be discussed with the surgeons. I want to have it because I just dread the thought of going through this for a third time, but also a double mastectomy is a big decision . I have a few weeks to think about it. They don’t do recon straight away here I think it is at least 18months but I think I might wait even longer.
@TicTok I hope your white blood cells come back thick and fast for you ready for your next cycle.
@Karden How nice to get away for a break. When I had BC in 2018 my OH and I went to San Sebastián after my chemo and surgery. We had an unexpected warm day so had the afternoon on the beach. I remember going for a swim in the sea, it was freezing cold but I just felt so alive after an awful 6months. Also the swimming felt great on my arm after having my nodes removed, I highly recommend if our pools ever open or if it is warm enough for the sea! I am focused on a break in October but will like be closer to home than in 2018! I hope your chemo ran smoothly for you yesterday and that your are not suffering with too many SE’s. Hopefully your trip will have helped boost your white blood cells and although I am a wimp when it comes to the injection and get my daughter to do it for me it actually doesn’t hurt at all.
Take care all
@noodledoodle I'm pleased to hear that the injections have been straightforward, I only need them for 5 days too so they shouldn't be too difficult to deal with. I have lost weight since starting treatment but the stubborn bit around my middle will come in handy now. Lol.
Hope you are doing ok. x
I hope everyone has been having a good week! ❤️😍
@Love running yes I totally did love the sound effects! what a shocker! didn't take many of the sachets either - it's been fantastic as I've gone every day. I had such a bad time first chemo with constipation, I'm so grateful it's worked! We don't have a door on the toilet this week (diy) only a sheet so my daughter thinks it's hilarious! good to have the laughs!
I've been thinking about all the training that you do - I would really like to do more. I used to go to the gym and do things like body balance, but haven't been since lockdown and now can't go due to chemo. I've been really lazy and seemed to have lost my fitness a bit, in terms of core strength. How are you finding the pilates - are you back in your normal routine for it, or just keeping it very gentle? I've been trying the yoga with Adrienne on you tube, but worry about overdoing it.
@coffeeandcake - yes it's so weird our reactions to the drugs! this 2nd chemo I feel much better than the first (although have now lost my sense of taste - argh! there's always something! I'm on the lookout for strong tasting things to make up for it). I don't think not having a strong reaction means it isn't working - having hair falling out is a definite sign. It is just we are all different - the oncologist told me that if you have any weak points it tends to effect those, I have a dodgy stomach and digestion so I guess it was always going to effect that.
@Cumbrian Lady really glad you had a mild response to your chemo! that's really good news.
@Michelle21 so glad your PIC line went smoothly! mine did too, it was a real relief. Hope the new regime goes well for you with the carboplatin x
@TicTok sounds definitely a good idea to get the white cells back up! Hope you are having a lovely last week and the sun shines! it feels so good to get the weeks ticked off. I've created (in a manic steroid fuelled moment) a daily medication/reminder chart with lots of tick boxes to tick. I did it initially as on a bad day I wasn't totally on the ball with remembering what I'd taken, but it also feels so good to tick off the boxes!
@Karden So glad your trip went well! that must have been wonderful to get away, your husband sounds a star! I have the injections to increase my white blood cells for 5 days following chemo. I was initially anxious about it but it seems really okay. The only thing I've found is remembering to take it out of the fridge 30 minutes before, and it does seem to give me bone ache (but not too bad this time round).
Lots of love to everyone 😍 xxx
@Karden @so glad you had a well deserved break. I love Whitby.
I have been having the injections to stimulate white cells and they really are simple to do once you get over the first. I think it’s just psychological, putting a needle into yourself but if you pinch the fat(and I have plenty to choose from) firm, it really doesn’t hurt. Good luck with it all. Not long before you finish your treatment which must be a good feeling!
take care XX
Hi @Michelle21 @and welcome. I too have TN BC and am on the same regimen as you I have had 2 EC and am having 3rd in a week. I will then move on to 9 weeks of paclitacel and 3 weekly Carboplatin. My oncologist did say triple negative cancers respond really well to Carboplatin, so that should give it a good old blast and get it shrinking! You are a bit ahead of me on the chemo but I have already had a WLE and will need radiotherapy too after chemotherapy. Let me know how you get on with the weekly. It will be handy to have some tips. Good luck with the Picc line, it is so much easier and well worth it
@Michelle21 Welcome to the group, we're here to support you every step of the way. It must have been such a shock to get your second diagnosis but you have got through it once and you will do so again.
Glad to hear that the PICC line has gone in ok, you will find it makes it so much easier to have the chemo infusions. I also bought a sleeve from Amazon as the ones supplied by the hospital were not a good fit.
I had my line removed after the first 4 chemos as I then had a lumpectomy and sentinel node removal but then had another put in for the current 4 chemos. Removal was a doddle and didn't hurt at all. A nurse literally pulled it out slowly straight after my 4th chemo session and that was it.
I have had no trouble with either of mine but it was lovely to have it gone and not to have the dressing permanently on. The first shower without it was blissful.
Good luck to you that all goes well this time. xx👍
I've had a wonderful few days away in North Yorkshire, not too far for me as I live in Sheffield but it has been such a joy to be somewhere new after 9 months of staying local. It was good to spend this time with my husband who has been amazing in supporting me at this time and is an absolute star.
My oncologist called me whilst I was away, which I was expecting as I have got my 3rd chemo today ( or the 7th if you also count the first block of 4).
She has prescribed a different anti nausea drug, I can't remember the name but told me not to be alarmed when I read that it's also for schizophrenia, it's a very small dose and only for a few days.
My white blood cells were still slightly low when tested on Monday and I am having another test early this morning. She has prescribed an injection to be done at home over 5 days from Monday to Friday following chemo. I have been ok since first starting Chemo in December but she says that it could be a build up effect and doesn't want me to have any delays between this Chemo and my last one on 1st July.
I've never injected myself before so hope it will not be too difficult.
I've got an early start this morning so will be back on here later with an update.
Hope you all have a good day. 😊😎🌞
Sorry tjat your back but you seem jolly nice, i have had some emotional experience with my picc line, but 2nd EC with it yesterday was a dream in and out of the chemo suite in an hour. So easy.
We are all on different paths but we all know we are on them together xx