MAY 2021 CHEMOTHERAPY STARTERS

[Michelle21]

@Poacher65  In 2018 I had 2xFEC and 4x Docetaxol with herceptin and Perjeta. I didn’t have any bad problems, in fact I preferred it to FEC as I had no sickness/nausea. I did have diarrhoea but it think that was caused by Perjeta or Herceptin. By the end of the treatment my finger tips had slight neuropathy but on a plus side my hair started to grow back by my last cycle. I painted my nails in a dark colour I don’t know if it made a difference but they were fine just a bit brittle and had stripes on them.

As you say we are all different and our bodies cope differently, I think the best advice is to take it as it comes but it definitely isn’t awful for everyone. X

[Poacher65]

Morning All you lovely ladies

Quick question, has anyone had or know about Docetaxel?

My next 3 rounds of chemo are this drug and I've scared myself silly reading about people's experiences which have been so negative.

My chemo nurse said this is often tolerated better than EC but again I know that each person's experience of the same drug can be so different and side effects so varied.

Any experiences from real people on here gratefully received. 

Hope you all have a good weekend. 

Take care xxx

[Karden]

Morning all,

I have been following your posts all week but haven't had any time to respond.

You're an amazing group of ladies and I am in awe of you.

@Michelle21 I am also a pragmatist and completely understand your need to plan your Mum's funeral in advance. Has she made her own wishes known? Is this the sort of conversation she would want to have with you?

@Purpledaze Sofa or chair, that is the question! The small details matter and I tend to over think things but hey, if it helps, who cares!

@Bex27 Lovely photo of Devon, what a fabulous place to spend a week. @TicTok I feel your pain with the hair. Mine had started growing back nicely after 13 weeks of no chemo and then it started falling out again when I started the 2nd phase. I've had to shave it off again and I found it much harder this 2nd time and cried as it made me feel that I was going backwards instead of forwards. Here's a photo of how it was after no chemo for 13 weeks. You can see my normal style in my profile photo

At least I know that it will regrow, albeit grey. I might take this opportunity to stay grey and save myself some money.

I'm feeling good now, 9 days after the 3rd FEC. I met a friend yesterday for brunch and a walk.

Hubby has gone to visit his daughter and family who live 200 miles away and who we haven't seen since last August. I insisted he should go rather than wait for me to feel upto it. He went on Thursday and will be back tomorrow and I've been fine. My 34yr old daughter is coming over today. We're going out for a pub lunch and she's staying overnight. We're going to have a pamper evening and watch a film on TV. We don't see each other often so she hasn't seen me without my wig. She will be fine with it but it's me who's nervous. For some reason I don't want her to see me as a cancer sufferer but just want to be seen as her familiar looking Mum. I was diagnosed last November just 4 months after losing my Mum to lung cancer and I didn't want my daughter and 2 sons to think that they were going to lose me too to this hideous disease that is cancer. People tell me all the time that I have been brave, positive and strong but it's easy to give this impression publicly because you want to protect those you love. I have many times when the tears come - usually in the shower, and even now, writing this. As others have said, we need to go with the flow and it all helps to deal with the ups and downs of this experience we're going through.

Best wishes to you all. ❤️❤️

[TicTok]

Purpledaze he did a good job to be fair but like you say it does get easier each day , I tried extra make up today and my wig all was good 👍

michelle21 I have gone for seedlip spiced gin I tried a sample and it was lovely with a nice ….. I will be thinking of you this weekend 😢can’t imagine what you must be going through xx

fevertree tonic and there was £6.00 off …. Happy days 

bex27 your place in Devon did look fantastic I haven’t been there for years .

[Michelle21]

@TicTok  I don’t drink and alcohol free lager is really low cal and actually very difficult to tell the difference between the real thing. Bavaria is my favourite as it’s not too hoppy. Also some fizzy ‘wines’ are low cal although you have to serve them really cold, Freiznent is a good one (not sure of the spelling!) If you fancy something that tastes like a ‘grown up’ drink you could try seedlip or other non alcohol spirits and then cal content depends what you mix them with. I serve them in the big round Gin glasses and sometimes add blueberries and tonic water or flavoured tonics. Drink as much as you like and the only hangover you’ll get will be from Chemo! 

@Purpledaze  I’m with you anything that gets you through. At the beginning of chemo I started bulk buying loo roll to use as a measurement of time, as we use it up I am closer to the end of treatment. Now how weird is that? I definitely worried about myself then. I didn’t do it when the pandemic hit I promise! 
@noodledoodle and anyone else who is moving to weekly paclitaxel, I am pleased to report after yesterday’s treatment I am feeling good. It is much gentler than FEC and the Carboplatins so if I can have two weeks of this in between then I’ll take it! 

We are going to visit my mum this weekend. She lives 3 hours away so I haven’t seen her for 2 weeks and I think she has become much weaker. My girls are both going to pop in on Sunday but I think that will be the last time they see her as I don’t want them to remember her like this. She has always been so active. I have started to think about her funeral, which in some ways feels horrible as she is still here but it is helping me. I am a very pragmatic person so to think about it now has made me realise how important it is to me. I am going to write her eulogy because I want it to be personal and I want everyone there to know how kind and supportive she was, what she loved in life and her lovely sense of humour. I know I want to have yellow roses as she loves them and yellow is her favourite colour. I would like to play somewhere only we know by Keane as she used to say it reminded her of fun times she had with me and my girls when they were small. 
Thanks for letting me spill all of this out here, it helps to share it and there aren’t many people I can say this to. Xx

[TicTok]

Hi everyone I went on to drinking nonsecco and alcohol free cider when we went on holiday which were fine UNTIL I saw the sugar content 😳 now I think Boris has had a good ol munch on that and doubled in size 🤔…. Is nothing simple.

gave a good day everyone xx

[Purpledaze]

Evening everyone, sending lots of hugs and strength to all.

It sounds like there have been some really tough days/weeks - it's so hard with all the ups and downs, but as many have said I guess we have to 'go with it'. I know that I seem to have become incredibly good at focusing down on the minute things of life - like do I sit on the sofa or on the armchair; should I drink water or a juice! 😂 I worried about this at first, thinking I was being a blob, but then I decided that if it helped me get through another hour of it all without feeling anxious or scared, then I was all for blobbing!  Not sure if that makes any sense - LOL

it's been lovely hearing about the plans to see friends and make trips away.  Inspiring and seeing that beautiful photo of Devon was just a treat - thank you @Bex27 - always wanted to visit there, so now it's firmly on my list.  And Sweden in midsummer, too, @Love running for sure!

@Poacher65 , others have said it already, but you definitely don't need to apologise to us for how you are feeling.  If only we could have a magic blanket to protect our loved ones from the worry and pain, right?  My mum died of ovarian cancer some years ago now, and I dreaded telling my dad my diagnosis as I knew it would bring back sad memories for him. And I worry all the time that he is worrying - and on it goes... But I do think there are days when it's ok; when the rollercoaster is on the "up" and the sky is as blue as in the photo that Bex27 sent, and the air feels softer, and then I say to myself; it's ok - today is ok.  I hope your down days start to turn upwards soon 🌻

@TicTok my husband shaved my hair, too, when it started to fall out all over my top. We're still talking - LOL.  I found it weird to see myself in the mirror with no hair, but now I've got used to it.  One less thing to think about and I hope it will feel easier for you soon x

@Michelle21 thank you for all your encouraging messages - so inspiring and supportive.  I'm so sorry about your Mum and as others have said, if we can help in any way through this forum - contacts/ links, information, space to vent/share - you know where to find us.  Your Kate Moss story was brilliant - without a doubt you will rock Kate Moss into outer space and, I suspect, possibly the psychologist as well!  

Take care everyone and thanks for just being so wonderfully "here" x

[Purpledaze]

@Love running this made me laugh!!  Rabbits it is - all summer long 😂

How did you get on with the pesto?  It's funny, although my appetite disappears for a lot of the time after chemo, I still quite enjoy cooking and baking.  My husband says I've made the best cakes since being on treatment!

I've also not been drinking alcohol since starting chemo - it doesn't really appeal at the moment.  But am looking forward to some celebratory bubbles when this is all over, for sure!

How wonderful that you were able to do the camping trip with your family - it sounded like the perfect boost.  I hope the longest day celebrations are fun and you can enjoy every minute!

take care x

[Sammy73]

@Michelle21 I'm sorry you might not have the option of reconstruction at the time of surgery. 

I will have radiotherapy and yes they voiced a concern about my implant!! Wtf. I will have hormone suppression too. Oh the joy!! 

I'm a b cup anyway and my new boob is slightly bigger and no sensation which has taken a bit of time to get used to. My man kisses her often!! Cant feel it!!! My other boob will have much more pleasure sure when we get to that state of affairs. 

Hair is a funny thing!!! Go with the flow. Had some wine tonight!! Rain cooling things down. All is calm x

[TicTok]

That’s true Michelle and I do feel better for it …. And number 2 ticked off 👍xx

[Michelle21]

@TicTok  At least the decision is made for you now, I think that must be the hardest part. It is demoralising when your hair is falling out. Another step forward x

@Sammy73 i had full node clearance last time and will have it again this time. You are right that is what takes time to heal. I was lucky last time and it all went pretty smoothly, I was driving more or less straight away. 8 weeks without driving must have been so frustrating, good to hear you are on the mend now. I love what you say about out with the old and in with the new! It does make sense to only have one op. I don’t think that will be an option here, I think whatever replacement surgery you opt for there is a minimum wait of 18months. Will you have rads after chemo? Does that affect the implants? I’m not sure what type of reconstruction I will go for but I think I will go smaller, possible a B cup, I’m DD now and they do get on my nerves a bit. Well actually quite a lot now with all the trouble they have caused. I think it’s probably a bit like hair loss, I think I’m going to be ok about losing them but when it actually happens I will probably grieve over the loss. But hey ho, problem for another day. X

[TicTok]

Bex27 did not have the cold cap nurse said if it’s coming out like it is there is not much hope for it , my top was covered in hair so I am back home and my husband has just shaved it off me me ! It feels better just don’t like looking in the mirror lol ….. EC was fine xxx

[Sammy73]

Hi @Michelle21 

I had a mastectomy on my left boob and implant replacment, kept my nipple. All left armpit lymph nodes removed and that has been the longer recovery and more pain wise. Op was 13th April and only now feeling more able to do everything, madness as it was day surgery, I thought I would be fine in 4-6weeks!! Us ladies are not good at relaxing and getting well!! Lol. I couldn't drive for 8 weeks, but we all heal differently. 

I wanted reconstruction there and then as I dont want to go back to have more surgery, it was out with the old in with the new!!

Again each to there own. 

Good luck with your journey x

[Michelle21]

@Bex27 I love your picture, it sounds like you had a great trip away that has rejuvenated you for the rest of your treatment. Fab weather too! 
I hope that your hair falling out lessens over the next week. Shorter hair is definitely easier to manage when using the cold cap. Also I only wash my hair once a week and make sure I don’t rough dry it as that can cause tangling and more hair loss. 
I hadn’t though about it like that but you are right crying when someone is listening as opposed to trying to stop you crying or you feeling that you should stop is actually quite liberating. Whether it is talking or time I feel a little stronger now. 

Thanks again to all of you for offering to help, support and sympathise, it’s very much appreciated. 

Today I am having number 2 of 12, so another one ticked off. The weeklies seem gentler so I’m hoping to walk as normal in the morning.  
Another step closer to recovery xx

[Michelle21]

@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

[Michelle21]

@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

[Michelle21]

@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

[Bex27]

@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!

[Sammy73]

@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

[TicTok]

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

[Poacher65]

@Michelle21 thankyou.

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

[Michelle21]

@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

[Michelle21]

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. 
xx

[TicTok]

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

[Love running]

@Poacher65  

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.

[Love running]

@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.

Take card

[Poacher65]

Hello All

@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

[Sammy73]

@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

[Love running]

@Bex27 

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. 

Take care

[Love running]

@Sammy73 

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. 

[Love running]

@Michelle21 

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

[Love running]

@Baroness 

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. 

[Love running]

@Baroness 

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. 

[Bex27]

Hi everyone,

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!

[noodledoodle]

@Michelle21 

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

[Michelle21]

@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

[Baroness]

Hi Noodledoodle,

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.

[noodledoodle]

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!

[Baroness]

HI, 

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.

[Sammy73]

@Love running 

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

[Love running]

@Michelle21 

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.

Good night

[Love running]

@Karden 

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. 

[Love running]

@Coastal 

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.

[Love running]

@Purpledaze 

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.

take care

[Love running]

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.

[TicTok]

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]

@Michelle21 @noodledoodle 

I will do...thankyou xxx

[noodledoodle]

@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

[Michelle21]

Hi Poacher
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. 

Michelle x

[Poacher65]

Hi ladies

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. 

Help!

Thanks all....and take care xxx