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

 TM1  Ive been thinking of you lovely!! Im so sorry to hear your down :-( by the sounds of it work being busy isn't helping so glad you have a break away planned hon. Dont be so hard on yourself you arent like a broken record at all. We have all been through the ringer a bit lovely and when you look at it you have only just come through surgery, radio therapy, tablets and the sheer stress of it all. What you have gone through was scary and brutal. Your mind was taken from day to day life to life and death thinking which is no small thing. The body and mind Id imagine are going to take a good while to recover and get back to a place of calm. 
For some reason at the moment Im waking up feeling down but this lifts through the day which I think is a cortisol thing but chemo’s got my body like a chemical pick and mix these days :-).
Im doing alright thank you lovely, finished EC chemo and finding Paclitaxel a bit easier.

Sending lots of love and hugs xx

Thank you sweetheart, we just had a lovely week in Benidorm..  haha I know your thinking omg lol, but we love it, was lucky with weather to, not mega hot but clear blue sky and able to sunbathe and get some big walks in.  Come back to freezing weather...still tired and my hands ache so much. I've bought fingerless pressure gloves off amazon and they help due to the amount of keyboard work I do. Legs ache, head itches omg bloody tablets! Spoke with breast care nurse and she said keep going with them a bit longer as it may settle. Just wish I could sleep...how are you hun where you at and how is RedRuth84? Xxx

 TM1  I'm glad you had a good break away.  I'm sorry you are struggling on the medications.  My oncologist said the side effects reduce by 3 months after you start taking them. They are really important and they can give you other things to alleviate some of the side effects.  Alternatively I've heard acupuncture can work well if you fancy trying that? 

I started Tamoxifen on 4th Feb. I will likely move up to an aromatase inhibitor with zoladex injections at my next appointment. I started radiotherapy on Monday and I'm just about to go to my 4th session of 20 (im getting 15 on the breast and lymph nodes and 5 booster sessions for the cancer site specifically.  Just getting through at the moment. We went out for dinner with the kids on Saturday to celebrate the end of our chemo lockdown which was lovely. 

In good news though my hair is growing back nicely now. I was my most bald at Christmas. The back and sides have better coverage than the top. I am just trying to decide what colour it's growing back as its not too easy to tell. I am a strawberry blonde normally and darker (more auburn) under the top bit. Fingers crossed it's similar.

 Rambleon88 I hope you are doing OK. You must be nearly at the end of your chemo? X

 TM1 oh lovely Im so glad you had a lovely get away, did you find the weather abroad helped with your pains at all? What tablet do they have you on? Same here Ive heard acupuncture can really help and it takes about 3 months for things to settle down. 
Its horrible the pain is effecting your sleep as that just adds to it. Is it nerve pain your experiencing? 

 RedRuth84  OMG reading you going out for food to celebrate the end of chemolock down makes me so happy!!! 

How are you finding tamoxifen? Ive just had my third possibly 4th now Im thinking about it Zoladex implant. Personally found it okay, the hot flushes can be intense and my mood is a little bit down around my cycle but generally with everything considered so far Im doing alright on it. 

Thats awesome news on your hair!! How many weeks post chemo did it start to show? My head is fluffy, its not proper hair but like this white almost felt feeling fluff all over my head. I look like a sweet that fell on the carpet lol! 

Ive got 2 chemo sessions left, 1 this Friday!! So far Ive found Paclitaxel easier going than EC but sweet Jesus when the pains kick in its wild! Luckily they only last 2-3 days then Im alright. 
Waiting to hear back if Il be having radiotherapy as Im in a bit of a grey area for that too but if its offered Im going to take it.

Sending you both lots of love! Its when I visit this chat I see how far we have come. Stay strong lovelies xxxx

I'm finding tamoxifen ok so far. I had it got 6 weeks before my operation too. 

My hair started growing back around New Year. Like yours, its fuzzy all over now. It's definitely thinner on top. But it does seem to be growing quickly. It looks darker than it was. We shall see.  Your words conjure quite a picture which made me laugh! 

Yes the taxols are hard for pain. I suffered with that on docetaxel. But only 2 more to go! Treatment marches on! It's quite a feeling finishing chemo!  Stay strong  xx

 RedRuth84 Glad your doing well on Tamoxifen! From what I can gather the hormone therapies arent easy drugs but still the majority get along with them fine its just a case of letting them settle.  How are you feeling about the op lovely?

Its weirdly exciting seeing hair come back isnt it!! I cant wait to just look like I gave myself a questionable pixie cut and ditch the wigs. Ive got naturally dark hair and a strong widows peak so think Im going to go through a phase where I look like the wee lad from the Munsters. 

To speedy ends to Chemo and Radiotherapy and onwards to funky hair do’s and grabbing lifes danglies!! Xx

Hi Ladies RedRuth84 Rambleon88  yes being away made such a difference I felt normal again but this weekend omg so lethargic and tired and I think I've got an infection, had a cold and for first time in a long time what I was blowing out my nose...yuk! Will attempt to get a doctors appointment.....my hands are worse..clicking thumb which I've no idea where that came from and is painful. To add as well waking with a dry mouth like sandpaper....so fed up but reading about you lovely Ladies omg your doing so well and truly my arms are wrapped around you both. So happy that your hair is beginning to show signs of growth. Made me giggle the 'sweet' comment. It's late and I'm in bed, but I'll jump on soon.   Keep going and you've given me strength to...I'll look into acupuncture to xx

 TM1  Oh lovely, I wonder if maybe the heat helped with your hands? Its surprising how many people who have gone through treatment end up selling up and emigrating to warmer climates. Hope you dont have an infection :-( its that time of year where so many bugs are flying around. For sandpaper mouth I found these little lozenges from superdrug which treat mouth ulcers really good, they taste grim but are really good at soothing your mouth. 
Im in an odd spot with my work at the moment and  going to likely have to seek legal advice which I really didnt want to do. Im off on sick right now though as between the taxel pain and work stress it was an awful combo. Definitely check out acupuncture lovely its supposed to be really good, same as hydrotherapy that has a reputation for being really good for pain/nerve pain. Xxx

Hi TMI,

I'm sorry to hear about your dry mouth. My GP prescribes Salivix spray for this. It is a pleasant peppermint flavour and does help for a short while. Salivix also make gummy pastilles, but I didn't find these as effective.

Jolamine xx

Hi hun, ended up at Doctors, mind you was a right pain trying to get appointment! Rang 8am Monday, it was ringing until 8.14am to be told all appointments gone and suggested I ring 111....so I dam well did, was so annoying. Thru answered almost immediately and after a few questions I got a telephone appointment for next day between 10.30am and 10.45am...ok not great but better than nothing. Tuesday morning at 8.35am Doctors ring me....suddenly I get an appointment for 4.20pm, perfect as I won't have to drive up and down the motorway to go back to work, I'll go home after appointment. Lovely young doctor and had a good chat, soooo I've definitely got a chest infection so antibiotics now for 5 days and she was pleased with the vitamins I'm already taking but said get multi vitamins with iron and calcium in, so off to chemist I went and got sorted. Dry mouth and clicky thumb (well that could be start of RSI - Repetative Strain Injury) are side effects of Letrozole. Once my DX results come in then they'll prescribe calcium tablets. Was reading today that Tumeric tablets are good for bones, so ordered them lol. 

Hmm your work hun...definitely get legal advice even speak with ACAS as we are classed as having a disability now so they can't just get rid or make life more difficult for you....I know work stress had a massive run in with boss before I went on holiday. I think she was having her own breakdown at the time but I had no sympathy for her...gave as good as I got, it wasn't even work related and I cried all afternoon....I told Doctor to...she said OMG you don't need it, been through all this and no support....

Anyway, I feel better today apart from yawning all day nearly today sp hopefully antibiotics will kick in and I get better....how much more treatment have you got left? Your doing fantastic by sounds of it....hugs xxx

Hi hun, ended up at Doctors, mind you was a right pain trying to get appointment! Rang 8am Monday, it was ringing until 8.14am to be told all appointments gone and suggested I ring 111....so I dam well did, was so annoying. Thru answered almost immediately and after a few questions I got a telephone appointment for next day between 10.30am and 10.45am...ok not great but better than nothing. Tuesday morning at 8.35am Doctors ring me....suddenly I get an appointment for 4.20pm, perfect as I won't have to drive up and down the motorway to go back to work, I'll go home after appointment. Lovely young doctor and had a good chat, soooo I've definitely got a chest infection so antibiotics now for 5 days and she was pleased with the vitamins I'm already taking but said get multi vitamins with iron and calcium in, so off to chemist I went and got sorted. Dry mouth and clicky thumb (well that could be start of RSI - Repetative Strain Injury) are side effects of Letrozole. Once my DX results come in then they'll prescribe calcium tablets. Was reading today that Tumeric tablets are good for bones, so ordered them lol. 

Hmm your work hun...definitely get legal advice even speak with ACAS as we are classed as having a disability now so they can't just get rid or make life more difficult for you....I know work stress had a massive run in with boss before I went on holiday. I think she was having her own breakdown at the time but I had no sympathy for her...gave as good as I got, it wasn't even work related and I cried all afternoon....I told Doctor to...she said OMG you don't need it, been through all this and no support....

Anyway, I feel better today apart from yawning all day nearly today sp hopefully antibiotics will kick in and I get better....how much more treatment have you got left? Your doing fantastic by sounds of it....hugs xxx

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