HI, yes I have all the same feelings and mixed emotions. I am having my first chemo session today and am terrified. I was supposed to be going in at 8.30am but I got a call yesterday putting my appointment back to 11.30am as they haven't got approval yet even though I have already signed the consent form. I am praying that my chemo doesn't get delayed. 

It is really hard to stay positive but I am really trying. Good luck with everything, have you got a start date for your treatment? I found that the hardest bit, waiting for my appointment and praying nothing gets any worse whilst waiting. 

Hi SueBea

Urgh I'm not very clever I've just typed a message to you and did something wrong when sending and lost it, doh! I'll blame movement of the train! 

Thanks for your reply a d good to know we all have these mixed emotions. At the moment it feels like it's not me a d was someone else they were talking about. As I don't feel ill and haven't had any letters etc. I was diagnosed on Tuesday so early days still. Think they said chemo in about 4 weeks. 

Aww sorry your appointment has been moved, I hope they don't keep you waiting too long. Good luck for today, I'll be there soon needing some encouragement.

Mich x

Hi Mich,

I just wanted to wish you luck for tomorrow, hopefully it won't be as bad as you are expecting.

I have had a servere stomach upset this time round but not so much nausea. I now wear a head band when I go out as my crown has thined quite a lot but the rest is holding up, well so far!!!

Rozza, I hope you are doing well and not over-doing things.

Love to you both,

Sue

Hi Mich & Sue,

Mich, I’ll be thinking of you tomorrow. You can do it!! All the very best & hope all the nurses look after you (I know they will).

Sue, keep rocking the headband, apparently it’s all the fashion this summer and soon wearing a beanie hat will be the fashion! Sorry to hear you have tummy ache and I hope it eases soon. Too many drugs and too many side effects eh :( just remember Taxol is nornally easier.

I did a half day in work today and now pooped!

Roz xx

Hi Ladies,

How you both doing?  Thank you for the support, the treatment went well on the day and I managed the cold cap yay!

I got ill that evening unfortunately and couldn't keep anything down for 24 hours including anti sickness meds, doh!  I had to have an injection in my bum, which didn't work so had to go to A & E for intravenous sickness meds, boo.  All went alright at the hospital and was home again in a few hours.  Apparently my meds will be adjusted next time as i had a reaction to them, trust me ha ha!  I'm just so glad not to be feeling ill and have my appetite back and of course so relived its no infection.  My next one is the 08th Oct, so fingers crossed no funnies ;)

How you you doing Sue?  Are you still feeling ok after your dose?  I had a nice walk again on the seafront on Saturday, which was the first time i got out that week, so much needed fresh air. 

Well done Roz! :)  I blocked myself out for 4 weeks to see how I do.  I can work from home if needs be so will see how it goes. Do you have more treatment coming up?

Mich xx

Oh my word you poor thing! So glad you’re better. I’ve been thinking of you. I had a reaction to my first one in the form of dizziness so I couldn’t leave the house for 10days as I kept falling over! I guess our bodies just aren’t used to it so we go a bit awoll to begin with. 

I dont have anymore treatment planned now, just a scan in November and I will go to have the port out soon! Strangely feels like it never happened now! My energy is coming back better every day and side effects are wearing off fast I’m surprised at how quickly it’s all repairing. Wishing you guys a lovely week and hope you can get another coastal walk in among this rain xx

Ah thanks Rozza, I know so weird hey!  I've got an appointment with Oncologist on Thursday so maybe they'll discuss my anti sickness meds then.  I've got natually low blood pressure and did feel rather drunk last night, double bonus!  Have you had that glass yet?  I'm to scared to drink lol!

Ah yes I remember you saying now, thats good so now getting back to a sense of normality and work. Glad you are feeling better :) I've opted to have the port fitted, just waiting for appointment.  I thought it would be easier as after EC I'll be having the taxol every week.

Thank you, wishing you all the best for your week ahead.  Might go watch a film tomorrow and the rain is due our way!

xx

Hi Ladies,

Mich, so sorry you had a bad experience with your first chemo, hopefully the next one will be a breeze.

The first week afer chemo is the worse for me, I also feel dizzy and strange but after that normality returns.

Rozza, I'm so pleased you are recovering so quickly. Sorry to sound like a broken record but can I ask about the condition of your hair now? I still have mine but the crown is getting balder by the day. I don't need a wig yet but my head band is a must if I go out. My next chemo is on the 2nd October and I'm hoping that I am allowed to use the cold cap with a bald crown which isn't that bad, yet!!!

I had a huge meltdowm yesterday, which came out of the blue. I though I was doing ok but something stupid set me off and I spent all yesterday evening and night in tears. 

Anyway enough doom and gloom. Keep well and happy ladies

xxx

Big hugs Sue. I think it’s completely natural to feel like that. You’re going through a lot physically and mentally and sometimes you need to cry! 

Yes my crown was bald by the end and then did the cold cap anyway but they just put a little gauze barrier on top so I didn’t freeze burn it. I wasnt at that stage until the last 6weeks of taxol though... Are you having a break for your operation or have you had that? If you have a break then I would think it’s worth persevering for the last 3xEC because my hair is growing back like crazy right now so your crown should recover in the op break.

One thing I have realised is that all my hair that’s left is my natural hair (I had blond highlights) and all of the blonde is the stuff that fell out so if your hair is completely dyed that could be why it’s shedding quicker.

Mich I had one bottle of beer and it tasted great! I haven’t had anything else yet though. I didn’t drink any alcohol during treatment as I didn’t think more toxins was a good idea! 

My port was a bit sore for a couple of days but fine when it healed. I had mine on a general anaesthetic but my cousin had hers on local. I’ll be having mine out soon, waiting for a date. It will be funny if that happens the same day yours is put in!

Take care ladies. As dark as it may feel right now just hold on in there. I can tell you that it gets so much better once the op and EC are out of the way xx

Hi,

I haven't got a date for my op yet or radiotheraphy. The chemo should finish early January but depending on the results of the BRACA test depends on whether I have a lumpectomy or mastectomy.

I feel much brighter today but yesterday I was a wreck. Have you been given the all clear yet? That is the day we all wait for.

My hair was dyed all over so I live in fear of losing it all but I will hang in there for as long as possible.

I've forgotton what alcohole tastes like! The thought of it makes me nauseus which I suppose isn't a bad thing.

Take care ladies

Sue xx

Hi Sue,

Yes it appears to have gone so I’ve been left alone until November and will then have a scan of some sort. I had the mastectomy and had reconstruction at the same time. It was alright actually, but hopefully you will get away with a lumpectomy only, less hassle.

Losing your hair is rubbish and no matter what anyone says makes it doesn’t make it any better. I did meet some people who wore a wig and you wouldn’t have known at all though. Your Macmillan nurse can probably help you prepare for one just in case. Keep on the cold cap and  I’ll keep my fingers crossed for you that the hair loss slows down soon xx

Hi Roz,

I have got two lovely wigs and loads of headscarves but I don't feel ready to wear them yet.

What a relief to be given the all clear but I bet it will take some adjusting to get back to a normal life.

It gives me hope when I hear success stories as there is so much negative stuff on the internet.

Be kind to yourself,

Sue

Hi Roz,

I have got two lovely wigs and loads of headscarves but I don't feel ready to wear them yet.

What a relief to be given the all clear but I bet it will take some adjusting to get back to a normal life.

It gives me hope when I hear success stories as there is so much negative stuff on the internet.

Be kind to yourself,

Sue

Hi Ladies,

Sorry to hear you had a *** day Sue. Glad you are feeling better :)  is there anything you are doing this week that will help? That will probably be me next week when my hair starts falling out! My friend that has gone through it reminds me that is fine to have bad days and feel vunerable and weak, its not easy what we are going through and those not in the know will remind us to stay positive all the time, which we are but we all have bad days in our life and often its the smallest of things that spark it off. 

I had a bit of a meltdown when I read everything on my diagnosis and admitted to my friend I'm really scared now.  I know its going to be a long road so I'm focusing on whats around the corner, err chemo 2!  I'm probably similar to you, where I'll have the opp and radiotherapy.  I've looked at my BRCA forms today and will give consent to the test.  I'm seeing my oncologist tomorrow. 

I dont have headscarves or a wig yet, that will be on Saturday.

Glad you have the all clear Rozz, cant wait for that day. Can I ask, have you changed your diet at all? I've read about being super healthy esp with TNBC but then you do need to live your life too. I think i'm fairly healthy now and hardly drink, ok prob more exercise which I'm sure most of us will agree too.  Hmm maybe me over reading again lol!

Big hugs to you both.

xx

Hi ladies, hope it's ok to join you.  I live in Hong Kong but was home in the UK in August, found a lump and now been diagnosed with triple negative bc.  I'll do an introductory post and write a bit more.

I just wanted to say since diagnosis I've come across two women that have had breast cancer (not trn) and gone on to have children naturally so it definitely is still a possibility.

Looking forward to getting to know you despite wishing none of us had to be here!

Claire

Hi Mich,

It is a very long road but as you say not worth thinking about the big picture and just take it in small steps. I’ll tell you both another positive story about my cousin: Diagnosed 2 years ago, same as us TNBC grade 3. She ignored the lump in her breast and even ignored lumps under her arms that appeared thinking it was nothing. They got larger and she went to the doc. It was all a bit out of control stage 3-4 by this point. So she commenced FEC, which didn’t quite work due to the advanced nature of her situation, so they switched her to carboplatinum, then taxol, radiotherapy, mastectomy. She’s now in the clear now and enjoying normal life again. So there’s definitely hope in 2019 :)

Mich I saw a dietician who told me to eat loads of antioxidants (veggies) and to limit sugar (even natural sugar in fruit) on the day before/of/and day after chemo. Apparently spiking your sugar level on these 3 days can make the side effects stronger. She said eat protein every day if you're less active (even just a glass of milk) because if you are losing muscle this again stops the chemo toxins hanging around in them and gets it out of your system quicker. On top of this I switched to organic milk and have almost cut out red meat, just a luxury steak once a month! I tolerated the side effects well and I’m sure it was down to a healthy diet, lots of water and as much walking as I could do. 

I’ve been racking my brains as to what I could have done differently in life, less bacon, wine, not living in polluted London, but in all honestly for triple negative I think it just happens! So now chemo is over i’m just ensuring an ‘everything in moderation’ attitude and will ensure exercise twice a week, but I haven’t drastically changed anything. 

Both of you stop googling :) enjoy your day xx

Welcome Claire! 

So sorry to hear your diagnosis and I hope you’re doing OK with the treatment. Thanks so much for sharing about your two friends, it’s great to hear these positive stories xx

Hi Ladies,

Sorry that you have to join our club Claire but hopefully we can support you.

These positive stories are really great to hear as people seem to forget to post once they get the all clear but it's the boost most of us need. Wow Roz, that's amazing news about your cousin. 

My cancer nurse told me that there was nothing I could have done differently to stop getting TN cancer. Obvoiusly a healthy diet and healthy lifestyle is recommened but we would have got the illness anyway. I will find it hard to cut out sugar as all I crave is chocolate and most other food makes me feel sick. 

Keep positive Ladies, easier said than done I know!!!

Sue xxx

Thanks ladies.  

So far I'm not doing badly on the chemo but it's early days.  Bit of nausea on double dose weeks but kept under control with tablets.  My hair started coming out by the handful so my boyfriend (a hairdresser) shaved my head and I'm going the bandana route.

I'm having paclitaxel every week for 12 weeks, every 3 weeks I have an additional dose of carboplatin.  After that I go onto cyclophosphamide once a fortnight for 8 weeks - I understand that one is a bit harder on the immune system.

My tumour has shrunk from 2.5cm to 1.5cm and I'm told that means I can have a lumpectomy instead of a mastectomy.  To be honest, right now, I just want a double mastecomy but the doctor says there's very little difference in survival rates.  

I know what you mean Sue because I got addicted to haribo when feeling nauseous! You will be pleased to know that chocolate doesn’t quickly increase the sugar level. The fat content in it slowly releases the sugar in you rather than quickly spiking it...it was the spiking my dietician suggested to limit. So don’t worry about chocolate :) 

Hey Ladies,

Welcome Claire :) 

Thanks Rozza for the positive stories and the food advice.  It does make sense about limiting the sugar around treatment so I'll give that a go.  A friend of mine is going through it in France, also TN and she has just said that she fasts the day before, during and after as it could help the drugs be more effective for the cancer cells.  As the little buggers lap it all up to grow lol!  So just need to find whats right for me, at the moment just hope I'll keep food and err water in me next time!

My one tumour feels different already, the big *** 53mm so hope it is getting the ***. I've been told I'll prob have a masectomy as only a small cup but they will assess later. I guess that will also depend on the gene test.

Which week are you on now Claire?

xx

Hey Ladies,

Hope you all have a lovely weekend :)

Big hugs

xx

Hi Ladies,

Mich, how are you doing now? I hope the neausea has gone. Have you managed to keep hold of your hair? I still have a lot left but my crown is thinning fast but still only need a hair band.

Roz, I hope you have settled back into a normal life now the endless hospital appointments have finished. 

Claire, it's brilliant news that your tumour has shrunk, I haven't had mine measured since treatment started which is a worry!

Have a wonderful weekend Ladies, if you can in the rain!!!

best wishes to you all,

Sue