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 and Rozza,

I hope you are both having a lovely weekend. Rozza, I hope you don't mind me asking about your experience with the cold cap? I had my first cold cap 3 weeks ago and am having my second session tomorrow. I've already lost a lot of hair but it's not noticeable. Did you continue to lose hair with your second session or did the shedding slow down? I know it sounds trivial but it's a big deal to me. I was just wondering when your biggest hair loss was. Of court it's different for everyone but I'm hoping the shedding will stop or at least slow down. 

Take care ladies,

Sue xx

Hi Sue

Of course. It started coming out 2 weeks after the first EC and it continued for cycles 2 and 3 of EC and then simmered on the 4th. I couldn’t understand where all the hair was coming from, it just kept coming, around a handful a day in my hairbrush for weeks, but seemed to be evenly thinning even after this and not noticeable or bald. Then it slowed on the final EC. When I started taxol, that started it off again and for about 3 weeks more came out and then it slowed down. Right now in my final week of treatment hardly any is coming out.

It sounds like a lot and felt like a lot, but was never noticeable until recently, so I got away with it for 4 months. In the last month I’ve worn a little head summer band over the crown of my head as that suddenly took a battering (apparently because the cold cap doesn’t sit properly on that part) but haven’t needed a wig or anything. Overall I’d say I’ve lost 50%, which up until 1 month ago was a generally even spread. I did have quite thick hair however. 

One thing I will say is I’ve noticed new hairs growing back already, loads of them and the sparse patches I cover with my hair band are quickly going. Almost 1 inch long, very soft & fine and this is down to the cold cap! 

As you say everyone is different. Alarmed at the volume coming out at the start I thought about giving up on the cap thinking it would never last, but I’m glad I didn’t.

Hope this helps

Roz x

Thanks Rozza, it's D-DAY today and I'm a little worried to say the least. It's such a crawl side effect after everything we have to endure. I'm prepared for a long, boring day.

Mich, I hope you are feeling a bit more positive today. The sooner the treatment starts, the sooner it finishes.

Have a lovely day ladies,

Sue xx

Good luck Sue! Hope they don't keep you there all day. 

Hope you had a good weekend ladies, 

Catch up later

Xx

Hi Sue,

Sending you a big hug - it is super nerve racking. The hair loss is very hard emotionally, but at least it’s not something that damages the body physically, and at least we know the treatment is working I guess!

Hope you have a good book or a TV series to watch. 

Wishing you a swift and easy recovery from this week’s chemo.

roz x

Hi Rozza and Mich,

Well, I had my second chemo session yesterday and besides feeling really dizzy, no other side effects (yet) I had to  wait 2 hours for another blood test results as the first one showed elevated liver levels but thankfully the test came back ok.

I still have my hair but it is thinning even as I type this. I have noticed my parting getting wider but not noticeable to the untrained eye (I hope)

I hope you are feeling ok Mich, not too long for you to wait now. The time will pass in no time.

Rozza, I hope you are now getting back to your old self and being kind to yourself.

Wishing you both all the very best,

Sue

Hi Sue,

Glad to hear yesterday went ok bar the delay, which seems to be the norm eh!  I'm deff going to be doing more reading.

I'm going to cut my hair before I start and hopefully donate it. I think it will help me being in control and doing something good.  Will be strange to have short hair err and no hair!  The only time i had an odd hair cut is when my mom decided to give me some mullet cut when i was 10.  Took forever to get the layers out lol!

I received confirmation from specialist hospital in london and they confirmed im on the right path and as you advised there are no clinical trials at the moment.  Perhaps one when I am finished chemo.  I have my pre- assessment on the 12th and my first session on the 17th Sep, eeeeek! 

Hope you are feeling ok now Sue.

Glad to hear you are celebrating Rozza with a cupcake ;)  I baked yesterday, think I might be baking more now!

Hugs xx

Hi Mich,

How did you get on at your pre assessment? 

Sue xx

Hi Sue,

Thanks, it went OK. Had my ecg and bloods done, something I'm going to have to get used to eh. I'll have a cannula in the beginning then they'll fit a port. It makes more sense now on the drugs ill be taking, EC for the first half then the last bit will be taxol /carbo with taxol weekly. 

The unit is very nice actually, not dreary like the hospital lol! It's bright n airy and everyone is lovely. I'm going to try the cold cap so need to be there at 10am on Tuesday. 

How you feeling now after your cocktail? 

Hope you both have a lovely weekend ladies

Xx

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,

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 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