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 Mich8,

I didn’t have the bone scans or CT scans, probably as mine was classed as stage 1 even though I had one in each breast so they just operated and then chemo. I did get the nuclear medicine injection the day before the op so my lymph nodes would ‘light up’ for the surgeon! I worked right up until the last minute also.

I find that most of my new friends at the chemo unit are over 60 and have been quite a hoot! The nurses were funny and sweet also so I felt really at ease. It kind of humbles you as you realise how many lovely people there are in the world trying to help you. 

Lots of people recommended the younger women together group to me as support, and also Trekstock, which is a charity for younger people and they have some interesting interviews / discussion topics on their website. 

Today has been baking in the park! I’m located on the sofa now for the rest of the night! Have a good evening xx

Hi Mich,

Feel free to ask away. I found the fear of the unknown is the worse part.

Take care,

Sue

Hi Mich,

How's it going? Have you got any dates for Chemo? I hope you are feeling OK and don't have to wait too long.

Have a great weekend.

Take care,

Sue

Hey Sue

I'm doing OK thanks, just struggling a bit with my migraines. Good news tho my CT and bone scans are all clear! V relieved about that. 

I have a start date of 17 sep and pre assessment on the 12th sep. Still waiting on a mri which is now the 11 sep. So not moving too badly I guess, prob the same as you. 

When is your next session? I hope to see my oncology doctor this week. I had to see another one at a different hospital on Friday. Wasn't too impressed with him, he didn't answer my questions on fertility and clinical trials. Ive heard my oncologist is lovely so hope to meet her soon.

I'm also feeling a bit like you were, where I just want it to start now. Especially as I've had most my scans so just around the corner. 

Have you got the picc line in? 

Hope you are well otherwise and had a good weekend. 

Mich x

Hey Rozza, 

How's it going on your side? 

Ah that's lovely you have a joke and laugh with fellow patients. I live by the sea side with lot of retired folk so think I'll be making some friends too

Hope u keeping well. 

X

Hi Mich,

Great news about your CT & bone scan and now you have a start date hopefully you will feel more positive. 

My next chemo is Monday, it seems like ages since the last one. No I haven't got a picc line in.

Try asking your cancer nurse about fertility, if she doesn't know, she will find out for you.

Take care,

Sue

Hi Mich

I’m really pleased to hear your bone scan and CT scan results! I had an MRI too and I also didn’t like the fertility specialist I was referred to, which was also at a different hospital to my oncologist. So much so that they offered me IVF to freeze eggs and I turned them down (but also because it delayed chemo and that freaked me out).

I had a port a cath put in as I was having EC bi weekly and taxol weekly so less time for the veins to recover. It’s not the nicest looking thing but I’m told PICC and port lines are good if you’re having more frequent doses.

I’m doing well thank you! I’m looking forward to life after my final chemo next week. Now I’m at this strange reflective stage where I’ve gained perspective and feel like being a nicer person so that’s a positive from it all at least! Next appointment with my oncologist is now not until early December, feels so strange! 

Wishing you & sue a lovely week ahead xx

ps I grew up on the coast. I think the sea breeze will do wonders for you :)

Hi ladies, 

So your last session Rozza, hope it went well  

I think I'll have the same treatment Sue, the combo one then paxol twice weekly. I'll find out more in my pre assessment I guess. 

I've also opted for the zoladex injections, nothing to loose by giving it a go. 

Clinical trials don't seem to be an option for neoadjuvant treatment in my area. Just waiting on info from london. I know must be mad to volunteer myself to be a Guinea pig

How you ladies doing? I'm looking forward to a relaxing weekend and not too much reading online. I did look a bit now I got my pathology report so want to make sure I understand it lol! 

Hope I'll manage with the cap of not, one of those things eh. 

I got myself some colour pens so I can faff with my adult colouring book. Mindless activity should help. 

Have a lovely weekend ladies

Xx

Hi Mich & Rozza,

Rozza, you must be delighted to be having your final chemo next week. Mich, chemo is manageable but obviously not the best experience! The cap is definately worth a go, I've still got hair and I have my 2nd chemo Monday. 

I also live by the sea and swear by the sea air so I will be having a walk this weekend, weather permitting.

Have a great weekend ladies

Sue xx

Hey Sue

Ah thanks for your message. Yeah psyching myself up! Bit teary tho the past couple of days I seem to well up at anything! I guess all part of what I am dealing with. I think getting my diagnosis report made it all feel more real. 

Yup I'm going to head for a walk. We've all joined this global challenge at work and have to walk at least 10 000 steps a day hmmm. So better get started  

Hope you are well Rozza

Enjoy your weekend ladies xx

Hey Sue

Ah thanks for your message. Yeah psyching myself up! Bit teary tho the past couple of days I seem to well up at anything! I guess all part of what I am dealing with. I think getting my diagnosis report made it all feel more real. 

Yup I'm going to head for a walk. We've all joined this global challenge at work and have to walk at least 10 000 steps a day hmmm. So better get started  

Hope you are well Rozza

Enjoy your weekend ladies xx

Hi Mich & Sue,

Enjoy your coastal walks! I’m in London so I’ll stick to the parks :) There are some clinical trials for advanced metastatic using immunotherapy drugs but none apart from that advertised around here. If you’re a BRCA carrier there’s a few trials for that though. 

Deffo try the cold cap and see how you go, I still have 50% of my hair and have loads of new hair growing back already where it fell out in the first month. 

Aww it’s natural to feel teary and scared but as Sue says it is definitely manageable and much better than it was 10-15 years ago. Once you have the first dose you can calm down, I guess it’s fear of the unknown for now.

I was hoping to celebrate Wednesday with a glass of wine but my tastebuds have changed and wine tastes horrible! So a nice cupcake will do :)

If either of you have any questions about the operation or EC/taxol experiences at any point just let me know. 

take care xx

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