Hi All!

I hope everyone managed to get at least a little bit of respite from the fear and anxiety this weekend.

Vicki - how was the beach hut? Hope that fresh air did the trick for you.

Take care of yourselves xx

I took the kids to the cinema on Saturday, and then had my sons 4th birthday party on Sunday. So I've managed to keep quite well distracted!! 
 

The breast clinic just called, and they've moved my results appointment to 9:40 on Thursday, instead of 11:40. So at least I don't have to worry all morning. It will be school run, then appointment!! Praying for benign results!! Xxx

Nice to hear from you Linze!

And thank you! Results Monday eek!

Hope you are good

Lots of love xx

So sorry you are feeling so rubbish with the chemo side-effects. Sounds so tough. Glad you are being well looked after by your hubby.

I have no doubt that you will get through this and that there are many others who have felt the same.

Your strength will get you through.

Sending hugs and thinking of you xx

Thank you so much. I actually feel human this evening. Felt sickly today but got out to a close by park and sat in the sun. Then managed to do sainsburys which was a miracle! Apart from a headache that wore off, I've felt OK tonight thank goodness. 

Thanks for your message. Xxx

Yay!

Really happy to hear this. Onwards and upwards!

You are an incredibly strong woman! Hang in there you've got this xx 

Hi Vicki, 

I hope you and your lovely friends won't mind me jumping in? I just had to respond to your post where you mentioned your 1st experience of EC Chemo. I too was fine when it was administered 1st time, but my nausea kicked in while I was waiting for my hubby to pick me up, and lasted almost 2 weeks! 

In between the 2 weeks, I've had a very dry mouth with ulcers along both sides of my tongue, headaches and fatigue. I have had to use the emergency red card twice. The first time I had pain in my upper stomach, 4 days post Chemo. I had the pain for 12 hours and couldn't take any more before I rang. The person I spoke to wasn't very helpful and told me to take paracetamol. I did, and the pain eased a little, but it was enough for me sleep and awake with no pain. The second time, I developed extreme chest pain. I called red card number, who told me to hang up and call 999. Paramedics checked, and I was sent to hospital for tests. I spent 9 hours at the hospital, (I had every test you could think of) and they couldn't find anything wrong. There is no problem with my heart. The doctor and consultant said it could all be Chemo related, but they had to do the necessary checks to be on the safe side.

Like you, I have been feeling human enough for nearly a week now and I'm loving being back to me again. The trouble is my second round is coming up on 3rd Mar. (Aghhh!) 

Although I know what's coming, it doesn't set my mind to think I can go through the side effects all over again. Throughout my journey, I've been confident had a positive outlook, but some of that has been worn away. Then I see the posts you lovely ladies have on here and I get immediately boosted!

Again so sorry to intrude, and sorry for going on

Take care Vicki, ladies

Much love n big hugs  

Vee xx

Hi Vee

Thank you SO much for jumping on. Honestly just knowing someone is out there who is having the same chemo is massive for me. It sucks. Its going to kill the bloody critters, but WOW does it suck. I'm sorry you've had such a *** time also. 

Did you have the injection for your white blood cells the day after? Filgrastim I had. That gave me mega pain in breastbone, neck and upper back. I've spoken to the nurses 5 separate times and dialled 111 yesterday as felt so rotten and made myself anxious. A GP called me back and prescribed different anti sickness meds. I'm now getting migraines on and off which are all to be expected also. I'm just accepting that I will have to ride the storm and deal with the headaches etc. And that part of my days I feel normal. Baths are my best part of the day. That and sleeping! 

Feel free to add me as a friend and reach out after your next cycle. You do know what to expect now and so do I, so we will get through this. Xxx

Hey Vicki,

Let me first thank you for responding and welcoming me, I really appreciate it.

I'm sorry you have had a bad time with EC, but together we will guide each other and others through this emotional roller coaster! Right?

I did have an injection to take the day after Chemo, but I haven't a clue what it was for. I was given my 'Chemo goodybag' of meds, mouthwash, etc....as I was leaving and to be honest, I remembered the injection, only because the nurse said it was important. Nausea took over the rest of my brain and I couldn't think straight. Like you, I was never actually sick, I just felt extreme nausea, which was enough to stop me eating solid food. (I'd rather be sick than feel sick and ****).

Anyway, after many attempts of trying (cos I thought it would hurt), my daughter gave me the injection. I felt such a wimp, cos it honestly wasn't worth the palaver I was giving. Lol!!

That could be the reason why I had that really bad chest pain. Hmmm, it kinda makes sense now, don't you think?

Amen!! To bath days and sleeping, they are my comfort days atm, and I love em!! Lol

Yes! To adding as a friend and after next cycle, btw, when is yours?

xx

Hi Vee

I'm no doc, but will put money on your hideous chest pain being due to the injection. I had breastbone, neck and upper back pain. All due to injection. It only lasted a day. It's your bones creating extra white blood cells, so it aches. 

I think I'm suffering more with headaches than nausea at the moment. It's bloody awful. My nurse texted me today to see how I was. I mentioned headaches and she said she'd tell my oncologist as they might lower my chemo dose if they continue. I'm having EC every two weeks, so I may suffer if my side effects don't give me any respite before the next cycle. 

How often are your cycles? I'm presuming longer then every 2 weeks? 

My next cycle is on 8th March.

I just watched Victoria Derbyshire and her chemo video diaries she took. Helped me to see her go through it and come out the other side! Brave lady filming that lot. Worth a watch xxx

Welcome Vee. 

So sorry you are going through this but really glad you have found this chat and sounds like you and Vicki can be a great source of support to each other. 

Take care and wishing you all the best on your journey xx

Hi Linze,

Haven't been on here for a bit.  I've felt a bit down this weekend so I thought I'd pop in, see what's happening.
 

I really hope everyone is doing okay.  Vicki, sorry to read you are having a tough time of it.  
 

I've been a bit in limbo these last few weeks as I had all my mammograms double checked again for a second opinion at another hospital.  They confirmed same diagnosis.  Second find of calcs was low grade DCIS.  Best of a bad lot I suppose!

seeing the surgeon this Wednesday to get a date for surgery.  I still want the mastectomy and will leave decisions about reconstruction to later on as I can't cope with it all at the moment.  It feels very real again now.  I've been busy with family and friends last few weeks and forgot about things a bit (a bit of denial I suppose), but the anxiety is creeping back now.  The post op pathology is a big worry for me and I'm worried about nodes.  Last time I saw the surgeon she mentioned that sometimes even low grade 1's can misbehave and be worse than a grade 3 which totally evaporated any positivity I had been feeling previously frankly!  Don't like her much tbh and she has said she is booked up until the end of March.  I dont  really want to wait that long as was hoping to be in better shape for the start of Easter hols.  She said I may have to have another surgeon??  

Best wishes to everyone, the original gang and anyone else who has jumped on since.  Sending you all a hug. x

Hi Linze,

Haven't been on here for a bit.  I've felt a bit down this weekend so I thought I'd pop in, see what's happening.
 

I really hope everyone is doing okay.  Vicki, sorry to read you are having a tough time of it.  
 

I've been a bit in limbo these last few weeks as I had all my mammograms double checked again for a second opinion at another hospital.  They confirmed same diagnosis.  Second find of calcs was low grade DCIS.  Best of a bad lot I suppose!

seeing the surgeon this Wednesday to get a date for surgery.  I still want the mastectomy and will leave decisions about reconstruction to later on as I can't cope with it all at the moment.  It feels very real again now.  I've been busy with family and friends last few weeks and forgot about things a bit (a bit of denial I suppose), but the anxiety is creeping back now.  The post op pathology is a big worry for me and I'm worried about nodes.  Last time I saw the surgeon she mentioned that sometimes even low grade 1's can misbehave and be worse than a grade 3 which totally evaporated any positivity I had been feeling previously frankly!  Don't like her much tbh and she has said she is booked up until the end of March.  I dont  really want to wait that long as was hoping to be in better shape for the start of Easter hols.  She said I may have to have another surgeon??  

Best wishes to everyone, the original gang and anyone else who has jumped on since.  Sending you all a hug. x

Hi Mary. 

Sorry to hear you have been feeling down this weekend. Totally understandable tho given what you are going through. 

It sounds like you have made a decision re: mastectomy and this is positive. Good to know your own mind. Rubbish that you are not happy with your surgeon and that you may have to wait so long. Perhaps exploring option of another surgeon could be a good thing?!?

Sending hugs and best wishes xx

Hi Positive T,

Thanks for your lovely message.  It always gives me a lift popping on here and reading everyone's positivity.  

I know what you mean about another surgeon, could be a blessing.  Sometimes these surgeons can seem a bit cantankerous but they're usually the good ones, lol!  I know the surgeon who did my husband's surgery was one of the rudest men we had ever met, but the nurses said he was the top man and my husband was so lucky to have him.  We laugh about it now.  He was lucky indeed.  

My surgeon isn't rude but you know when you just don't have an empathy with someone?  When you feel so vulnerable you just want reassurance but they're not there to mollycoddle I suppose but just get on with what we need.

I wanted another lead surgeon that had done my aunts mastectomy and reconstruction but she's not available until June!  I'd already seen her previously about a cyst. When I went in for my original results I thought I was seeing her again but ended up with another surgeon who is ok but now it looks as if I will see someone else as she's booked until end of March!   I feel a bit passed around tbh!

Im just trying to focus, it just needs to be done now and I need to get on with it.

Sending a hug back xx

Oh bless you. It's such a rollecoaster. 

I do think that surgeons can be a bit arrogant/impersonal by nature.....but this may well be what makes them good at their job!! I work in Healthcare and some of the best consultants are a bit lacking in their bedside manner but are so good at what they do!

I truly hope you get a surgeon who can do your surgery in a timely manner and who isn't too much of an *** haha!! 

Sending hugs xx

Hi Mary

Sorry you are feeling down about all of this. I can only say that if the DCIS is low grade, I would take hope from that. My DCIS is grade 3 and even then, there is still a percentage that will never escape, so please don't worry yourself about all the bits and bobs that come after - i.e. nodes etc. Only deal with what is in front of you right now. And from what I can gather, it is that you have something that many people don't even class as cancer and many women have, live with and never know they have it. Some even ask for active management, i.e. just checking on it every few months. (I think you know this though and didnt think your anxiety could handle that if I recall correctly?) DCIS can cause all sorts of anxiety, but try and stay positive. 

I am feeling OK for the first time since my treatment last Tuesday. No headache, sickness or anything else. It feels like a miracle! 

Big hugs to you and everyone else on our chat. xxx

Hi Vicki,

Thanks for your message.  You're so right.  I'm doing what I always do jumping forward with what ifs and panicking about things that I don't even know about yet.  I've reined myself in AGAIN!  On Wednesday I'll get the date for surgery so will need to focus on that and get to the other side.  I want to be in reasonable shape for Easter and need to book a holiday.

From your update it sounds as if you are doing incredibly well.  I'm sorry to hear you felt rotten initially on chemo that must have been awful but each session is another stage closer to finishing and you seem so strong.  All I can think of saying is just so well done for getting through it, you're amazing.  

Sending you a hug xx

Hello, I've been reading this thread over the last couple of days. Very supportive and friendly! Similar situation to most of you - mine is PLCIS picked up through calcifications in breast at mammogram.

Diagnosed 25th Jan

Lumpectomy 14th Feb followed by emergency re admission on 19th Feb with huge haematoma. Surgery to evacuate haematoma on 21st Feb. 
Phew!

Been back to clinic today for a follow up and dressing removed. My scar is nastier than I thought but let's hope the critter is gone and I get clear margins in my results. I'll also be having radiotherapy. 
Im hoping for more interaction and support here than I've had on a different forum, I really need to talk to others to keep perspective and some sanity!

So here we are getting to know each other even though we'd rather not be here at all. Happy to share, support and chat. 
Also if anyone knows of any local groups, I'm in Derbyshire xx

Hi GT63

Welcome to this thread.  I'm so glad reading all the contributions from all the fantastic ladies on here has helped you, I certainly know it's helped me.  If sharing our experiences has helped in only a small way then that's amazing.  Everyone is wonderful at staying positive although there is a recognition that we all have bad days. Please reach out to everyone on those days, you will get back some wonderful support and good advice.

I'm sorry to hear that you had the haematoma after the lumpectomy.  That must have been very sore and the last thing you needed!

Sending you all good wishes and a hug.  I know everyone else will be here for you. X

Thank you so much ️ xx

Welcome GT63.

Sorry you find yourself here but glad you have discovered this chat as all the ladies are amazing strong supportive people and I have really valued being part of it.

Sorry to hear about your haemotoma. Not what you needed after the stress of diagnosis and lumpectomy.

Happy to chat any time. Wishing you all the best xx

Evening ladies!

Hope you are all doing OK!

Just to update, I met with my surgeon today and there was nothing new found on my MRI so plan remains to have wide lump excision with bilateral reduction. They will have to remove a bit more of the left breast than initially thought and I will lose my nipple but in the grand scheme of things I am good with that. 

Fingers crossed for clear margins but if not then am open to the idea of mastectomy although surgeon feels optimistic.

Next step surgery on 10th March so time to get organised and drum into my four year old that she won't be able to jump on mummy for a while lol.

Sending hugs to all xx