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MAY 2021 CHEMOTHERAPY STARTERS

Michelle21
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@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

Karden
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@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

 

coffeeandcake
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Hi everyone,

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! 

 

TicTok
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

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

Michelle21
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@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

Poacher65
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@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

Michelle21
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

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

Coastal
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

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

    

 

 

TicTok
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

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

Love running
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@Michelle21 

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 😂😂😂😂.

Love running
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@Purpledaze the pesto is terrific, but the kids prefer the bought one (the taste of conservatives and sugar I suppose)

Love running
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@Purpledaze 

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🤣

Love running
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@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. 

Love running
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

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

TicTok
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Karden yes please do …. Glad to here the cancer was reduced some what , that also gives us hope xx

Karden
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Karden
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@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. ❤️

TicTok
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

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

Karden
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

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.

 

 

 

 

Karden
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

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

Poacher65
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@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

TicTok
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

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

Michelle21
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@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

Shi
Community Champion
Community Champion

Re: MAY 2021 CHEMOTHERAPY STARTERS

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

Poacher65
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@michell21

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

Michelle21
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@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
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

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
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

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

IMG_20210511_093305109.jpg

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
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

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
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@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
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

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
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

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
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@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
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@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
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

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

Michelle21
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@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
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

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
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

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
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@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
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@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
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@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
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@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
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

 

@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!

WhatsApp Image 2021-06-14 at 15.08.38.jpeg

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
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@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
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

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
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@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
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@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
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

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
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

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
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@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.