Hey everyone, 

Hope your all okay. 

Struggling to sleep right now. 
Had my meeting with Oncology today, lovely person and talked me through everything. I just feel like it was such a different conversation compared to my post ops. 
Post ops was so positive and it all felt very “you can go for chemo if you want” radiotherapy wasn't even discussed. I was told to check over Predict with the sentiments that my cancer was removed with surgery and due to its stage/grade and as a luminal A its less aggressive/likely to return and if I wanted I could just take my tamoxifen and go but I opted to go for chemo to mop up any strays and for my own piece of mind.

Cut to today’s appointment and its now being referred to by the Onco as “more aggressive” and although in terms of treatment Im HER - it did have HER cells but its still negative and it wont change treatment at all. Il be doing 4 sessions of EC and 4 of Paclitaxel over 4 months. Il also be having some sort of injection for my bones once every 6months for 3 years and being put forward for ovarian suppression now. 
The Oncologist felt Oncotype would just be wasting time as due to my age and it having been multifocal it would likely have scored in the intermediate to high risk bracket and have just merely delayed chemo. He then throws in radiotherapy due to my age even though I had a Mx I should discuss RT. I had to ask if what I was told about it all after surgery was still the case as it just felt like such a different conversation. 
I feel like what positive sentiments I took from my post ops have been shaken a bit. I know its silly to but a part of me clung on to the fact my predict score was good (98% for 5years and 90% for 15 years) for comfort but I was told by my onco to “take Predict with a pinch of salt” although he did go through it with me and got the same result as me but said where as on predict it gave me a between 1.5 - 3% benefit to chemo he felt it would be closer to 10% benefit in reality. A pretty huge difference in my eyes!

I suppose I just feel a bit more scared again which is weird as apart from the bit about HER2 I knew the rest, just felt a bit like today had a more threatening tone to it all. Has anyone else had this kind of difference between their surgeon to their oncologist? Id rather go belts and braces with it but post ops just felt so much more hopeful, reassuring and less threatening than today. 

Sorry for the long vent its just all playing on my mind. 

xxx

Hi Rambleon. Yes I had the same experience between my surgeons and my oncologist. I haven't been given my Predict scores but did do it myself. I am now very sceptical about my surgery and I'm now even wondering if I was given the right advice about that too.  It doesn't help our piece of mind at all. I go back to the oncologist tomorrow for the first cycle review. Xx

Hello TM1  sorry Im only now responding! Oh lovely thank goodness you did get an appointment and the doctor was on the ball by the sounds of it chest infections can be so nasty. How are you feeling now?? Sometimes its just a relief to have a doctor that listens!! 
Oh gosh my work :-( I dont know what to do, I might contact ACAS soon. Im off at the moment as its just stressing me out so much being there. Basically the ceo made a “temporary” hire to cover me as I was diagnosed, I use quotes as what was said vs what happened can vary quite a lot. The ceo then got fired and as it turns out the temp was told he was permanent which took around 60% of my job off me :-(. In effect the second I got diagnosed they made me functionally redundant without even speaking to me, I found out what they had done this to me on Linkedin. One half of me is so hurt/angry and the other just sees life too short to let myself be dragged down. Xxx

Hi hun...feeling loads better apart from fatigue and usual aches and pains. Now listen hun, I know you are going through such a lot at the moment but sounds to me that's unfair dismissal. The second we got diagnosed we came under the disability at work act, fact. So please speak with ACAS they are fantastic. Get a screen shot of that linked in post ( I'm on therr Lol)...make notes to hun. Then...check your home insurance sweetheart as I am sure you will have legal cover and they can fight this for you...I know because we are going through this right now with my partner. Can't say too much but it's a well known company he's worked for for 38 years and well, he's got solicitors involved now and we waiting patiently at the moment. Think on hun, we didn't ask for this diagnosis but by God you can't be treated like you don't matter hun. 

Yes doctor was so on the ball and lovely. Keep fighting hun. Xxx

 TM1  I'm glad you are feeling loads better (apart from the fatigue and aches/pains).  I hope these also get better soon. I'm sorry to hear about your husband's troubles. It's difficult. I know!! 

 Rambleon88  I agree with TM1, see if you have Legal Expenses Insurance with your house insurance policy. They do use referral firms so you don't get a choice of solicitors, but they should be fine to help you.  You have 3 months from the trigger point to issue a claim in the tribunal (but they'll explain that).  Have work said anything to you yet?  But keeping any evidence (screenshots) is good advice.

Healing hugs to all. Xx

Hi lovely, yeah all in the hands of the Solicitors and Tribunal service now, so it depends if the company acknowledge and want to settle before it goes to court. Let's say it's not the first time this company has been brought to justice. It's hard because he doesn't want to work now, its trying to find something that will suit him. 38 years in same job is hard when looking for something else...anyway just have to sit tight and fingers crossed lol...I'm fed up today, with myself and this constant feeling of fatigue...taking it out of me...and work is quite but next month I'll be mega busy so dreading that. Hope you're doing OK? Xxx

That will be tough for him. I'm sorry you are still feeling the fatigue.

I was speaking to the BC Nurse on Tuesday about fatigue. She said it will slowly ebb away but can last up to a year (particularly so because I had chemo). So hopefully yours won't take so long. She recommended some exercise  (I do the school walk of a mile each way in the mornings anyway) so I tend to get between 8-10,000 steps a day.  Are you drinking enough water? I understand that also helps. 

I have been speaking to work about my return. I'm hoping to return in May when the worst of the side effects  have worn off a bit. I'm nor quite sure how that will work with my job as it'll be a slow phased return. Buy we'll just have to see how that goes. Xx

 TM1  RedRuth84 

Hello lovelies!!!

Thank you, Il definitely check with the insurance. 
Ive got evidence of everything stored thank goodness its just such a shame as Id worked so hard for them. TM1 oh bless him, you’d think after giving 38 years of your life to an employer they would be respectful enough to not want to put him through court! Whats wrong with these companies!! Mine is a bizarre place to be honest so I shouldnt be shocked by how I was treated. 

How are you both feeling? 

 TM1 I hope your feeling better soon hon, this time of year doesnt help, its grotty, cold and damp.Plus we have all had the absolute *** kicked out of us and in the grand scheme in a really short space of time. I think our minds and bodies may still be in a bit of shock from it all. 
RedRuth84 is your piccline out now? How are you feeling lovely? I was wondering how long you left it until you lifted your chemo lockdown? Im counting the days now. 

Well ladies providing my bloods haven't done anything whacky now tomorrow will be my last chemo session! 

Just want to thank you all (especially you two ladies!) for being on here. Im gutted your in the same boat as me but really grateful you’ve been here. When I started this thread I had no idea it would help so much. Xxxx

 Rambleon88  The final one! That's such a milestone and definitely one to celebrate. I hope this cycle is kind to you. My PICC line came out around day 12 of the cycle and I was so glad to see the back of it. I started to lift the lockdown around 2 weeks after the cycle and I'm so glad to be able to do more things now - like going to stay and learn sessions at the kids school this week. My 5 year old was so pleased to see me there this time :)   However we haven't had the family come to stay yet. I  wanted to get past radiotherapy first and then we've got 3 lots of belated Christmas weekends planned in April and May.  My advice is don't put too much on yourself. I'm told radiotherapy fatigue peaks at 2 weeks post treatment but that fatigue after chemo and radiotherapy can last up to a year. 

I would also echo your thanks to all as its really helped me too. Big virtual hugs to all. Xx

 RedRuth84  Awe bless you hearing your little 5 year old was so happy instantly made me smile! Thank you lovely, at the moment its just me and my son as my husband is away with work but starting to plan a little day trip for after chemo but before radiotherapy when the hubby gets back :)!! Its weird as it feels like so much has happened yet normal life pretty much plodded along inbetween the madness.

Thats so exciting with your festive weekends, the kiddos will love that!  
 I can imagine with the picc, its one of those things that Im grateful for although I feel like it added another layer of “life has gotten very weird very suddenly!!” Was yours okay coming out? The nurses keep saying how easily they come out! 

I think it will take a while for the dust to settle, our minds and bodies have been through an awful lot. 

Looking forward to having that sense of bodily autonomy again and getting into some fitness as I find I feel so much better for being active, plus all my clothes are now currently too small for me. 

Sending hugs :) 

Xxxxx

It is weird going through chemo and feeling totally awful for a few days but everything else keeps going. It amazing that you've got plans for when your husband gets back. I hope you've got help in the meantime. I always really struggled the weekend after the cycle on the taxol. 

The PICC line removal was so quick and simple. I was dreading it after the awful trauma of taking 4 attempts to get it in. But it was a 1 minute and totally pain-free job! Hurrah! They do make you sit for 15 minutes before you can go. But otherwise it was easy and quick.

I've been keeping up the walks to and from school and walking the dog. So I've kept some exercise up and its bee  good for me. I hope you can get back to some exercise, particularly if you enjoy it. I know they recommended a mix or cardio and weight training to keep in remission. I'll have to look into this further as gyms really aren't my thing. But it's all about self confidence in how we look too that's important. Xx

Totally agree!! Its so important to feel good especially with all we have been through. Ive now got a very clean but really big scar now. Im weirdly at peace with it though its very much so is what it is to me. 
Its so blood weird isnt it! I hope to anyone starting this journey finds some comfort in reading that yup chemo is hard but normal life just ticks over! 
Speaking of chemo I have officially finished!!! 
Didnt ring the bell, I handed over chocolates and a  card to the nurses and some hugs and high tailed out of there. 
So glad the picc line removal is a smooth process. Im still on blood thinners and just picture it being like something from the old Rick Mayal show the Young Ones :-D! 

Sending big hugs to all x

Totally agree!! Its so important to feel good especially with all we have been through. Ive now got a very clean but really big scar now. Im weirdly at peace with it though its very much so is what it is to me. 
Its so blood weird isnt it! I hope to anyone starting this journey finds some comfort in reading that yup chemo is hard but normal life just ticks over! 
Speaking of chemo I have officially finished!!! 
Didnt ring the bell, I handed over chocolates and a  card to the nurses and some hugs and high tailed out of there. 
So glad the picc line removal is a smooth process. Im still on blood thinners and just picture it being like something from the old Rick Mayal show the Young Ones :-D! 

Sending big hugs to all x

Hi lovely to hear that your chemo is done! And line is out! We'll I've had a positive biopsy. Told by gp at my request. Had a melt down and went to see him. He was amazing. Gave really good coping advice and diazepam!! Got an appointment on Monday for the plan. Looks localised on written report  but who knows! I'm still in meltdown and crying all the time! Causing headaches! Caught a cold too, so all these extra symptoms are throwing up further questions now!! Like has it spread, is that why I'm coughing and aching, breathing funny, chest pain!! Omg!! I'm a mess!! I'm outta control and spinning it.cant wait to get some answers. With that in mind, did anyone ask for a full scan? Was it offered? 

 Nanibamp oh lovely Im sorry to hear your biopsy was positive. Your in one of the hardest times in this process and I know myself and many others will tell you, it gets easier once you have a plan in place. 
I was given a CT scan from thorax to I cant quite remember where but I remember thinking “Oh thats pretty much all of me” I also had a MRI but In my case the MRI wasnt the best as I some how managed to nail “Small, dense yet droopy boobs!” all in one. 
It really does feel like free falling, I hope you find the diazepam helpful, I know I certainly did. 
Your body right now will be all aches and pains as you process the complete and utter shock of a positive biopsy and between the cold and crying having a headache would be expected lovely :-( your body will be so tense and its a mental rollercoaster. Try not to let your mind play tricks on you. Sending massive hugs xxxx

Hope they offer me that too! Congrats on the boob status! Truly nailed it!    I know in reality that I'm overthing every ache and pain, but that's me! Always been the same.! Hopefully you're right, that as soon as I get  a plan, I'll cope.better. my poor husband is bearing the brunt of it all right now. He doesn't know what to do for me. Roll on Monday!

I'm so sorry to hear those results Nanibamp   However, as Rambleon88  has said once you hear a plan it does get easier to deal with. It provides reassurance. I didn't have a full scan. They did request a further MRI as the boob one showed something on my liver which they had to investigate (but thought it was nothing concerning). So I had a further MRI and it was just cysts (which are apparently very common).   Things tend to move quickly now. Make sure you put a list of questions together to take with you on Monday. It does help. Keep positive. 

 Nanibamp oh lovely you will feel better once a plan is in place. Your in the point of the process where you have enough information to be terrified but not enough just yet to move forward which is so so difficult. The only way I can describe how I was with my husband during that period was like a koala clinging on to a tree! We would put movies on as a bit of escapism and Id just cuddle up trying to ignore my thoughts. You have had one the most frightening shocks a person can have hon :-( I dont think its overthinking aches and pains as much as your mind and body both being in shock. This process moves quickly once your on it and even though treatment can be over a course of months depending on whats needed its weird how once your the other side of it you kind of go “blinking eck that flew by!” 
Totally agree with RedRuth84 on taking questions with you if you have some on Monday. I had a habit during this process of feeling overwhelmed and just going “Oh, okay” so it really helps to have someone with you or something written down. Xxx