Chemo JAN 2017

[Esther c]

Wtp, so sorry to hear this. That really is sh*t! I think I would be drowning my sorrows and having a damn good cry as well. We're all here for you.  Take care. Xx

[RobinJ]

Wtp I am so sorry you've had this news. Like many of us I suspect I looked at the clock at 3.00pm and thought of you. I hope you know we are all sending you massive virtual hugs right now. I know it's not much consolation but we are here for you. Much love R xxxx

[Jackie1952]

Oh Wtp.

So sorry you've had this sh*t news.

I can't say I blame your plan of action at all.

And crying, shouting and screaming are all good too.

This bloody disease doesn't know when to give up.

Just know that we are all here, virtually holding your hand, and giving you the biggest hug.

And we will be there till you have beat the bugger.!

[Wtp2016]

B*llocks!! They found LCIS, DCIS and IDC in the biopsies 😩. So not only back to mx rather than lumpectomy but they want me to have it ASAP (next wk) which means no immediate reconstruction as the waiting list is likely to be too long. Not to mention that there is more active cancer left than the scan showed. The biopsies were taken from the two furthest points on the shadow and the tumour is kind of in the middle. Which I guess means in theory there could be active cells elsewhere in the body, right? I've had a good cry and now about to drown my sorrows. I know it's not the right thing to do but OH is with me and he's t-total so will keep me in check. Thanks for all the kind words and thoughts. Bloody stupid cancer xxxx

[ebim]

Hi Teddies,

just been catching up on nearly 6 days of posts. Looked at the time and realised that wtp you will have had your news by now.  Thinking about you.

well done Egg you deserved the medal for finishing and for perseverance.

Love Ebimx

[Suze123]

Big hugs WTP. We're all thinking of you xxx

[Beedot]

Thinking of you Wtp. Beedot xx

[Jackie1952]

Oh Wtp.
Praying hard that it won't be what you think, and for lots of strength for you. Xxx

[Blue2]

Will be thinking of you this afternoon wtp.
Hopefully all will be OK, but even if it's not good news like you feel, it probably won't be the worst news you're imagining. I'm only saying that as if you're anything like me throughout this journey, I always think the worst case scenario! I can't help myself!

X

[Esther c]

Will be thinking of you this afternoon wtp.
Xx

[EggG]

Wtp will be thinking of you this afternoon and keeping everything crossed. I really hope it's good news
Egg xxx

[Wtp2016]

Hi all, they didn't have my results yesterday when I went for the pre-op but my BCN just callled and they are in now. My oncologist wants to see me at 3pm. They wouldn't say anything over the phone and I could tell by her tone of voice that it is not good news. I'm literally back to falling apart again. I hate this so much xxxx

[lighthouse07]

Suze - I'd be intetested in a fb group. Like the idea of meeting up at some point in the future too.
Wtp - how did it all go? X
Much love to all. X

[EggG]

Wtp how did it go with surgeon and assessment?

[Esther c]

Thanks suze re Nordic walking info..  I am lucky enough to be close enough to the penny Brohn centre to go there, just need to get myself a bit more organised.  I've done the residential Living Well course there and that was good. 

Jackie, thank you for the group hug and for the new party food, it all looks lovely.  I'm sorry you are are having a rough ride with the radiotherapy, you will deserve the biggest certificate and biggest sangria when you finish!

Hair . ... mm,  a bit like a Brillo pad at the moment - I haven't quite got the confidence to go "bald". It looks like it's coming back grey/dark brown.  More concerning are my eyebrows, they look like a pair of 5 o'clock shadows!

Wtp thinking of you with your biopsy results. X

Work wise  my onc said he doesn't anticipate me going back before the autumn and I feel I need time still to process everything and get my head round things and assess if I want to go back to being a critical illness assessor and to be honest emotionally I'm still struggling.  So each day at a time there.

looking forward to the Facebook link.  We've been through a lot and it will be nice to keep supporting each other. Xx

[RobinJ]

Good luck today Wtp. Jackie thanks for the group hug - we all needed that. And the new party food looks fantastic, much better than sausage rolls. We can even forgive the sangria for being red as no doubt it tastes a lot better than chemo. Suze I meant to say I laughed at your vacuum cleaner fluff comment, as that pretty much sums up my hair. Looking forward to our fb group. R x

[EggG]

Good luck Wtp!
Mmmm jackie that paella looks yum!

[Jackie1952]

Wtp - praying for great biopsy results. xxx

[Slowski]

Wtp,

Sending good vibes your way

X

[Wtp2016]

Yay party!! Yay group hug 🤗🎈🎉
Quick hair response - mine came through grey but now finally getting some of my old colour and warmth back. Eyelashes are also blonde but I think it is because they are not proper ones yet - just that weak, wispy hair - I'm hoping they will strengthen up as it's so hard to put mascara on 😂
Pre-op assessment later and hopefully biopsy results as the op is depending on them 😬
Looking forward to the FB group! Xxx

[Jackie1952]

To all January 2017 teddy warriors

Group hug time again - and the party is on me later........no sausage rolls I'm afraid.

[EggG]

I am no investigating how to join FB, as would love to stay in touch with everyone on here. Feel like we have come through so much, and everyone does understand exactly what we have been through. Whenever I've posted about some side effect that has been worrying me someone has always come back with a "I've had that too" and it makes me worry less. Oncology team are kind but don't really know what it's like, and haven't always had advice for some of the issues (like the horrid corded veins!)
I don't feel like this journey will ever truly be over, as I guess we will continue to have contact with the oncology team for quite some time, so would love it if the thread/group could keep on going. Especially as I will be slogging on with surgery/radio/herceptin/hormones for a long time!!!!
Hugs to all, and thank you again for all your good wishes, it means a lot!
Egg x

[EggG]

Fen your hair comment made me laugh as mine is also looking like a toilet brush at the moment! A dirty grey one!

[RobinJ]

Hi Beedot. The nails don't come off completely. They are growing out very soft and weak and seem to 'tear' across about half way down. Not painful. Seem to be growing very slowly at the moment which I suppose makes sense as so is my hair.
Suze. I too have blonde stubbly little eyelashes and dull mouse coloured hair. I understand it's temporary and colour returns eventually.
Onwards we go. So nice to have everyone at the party. The non red cocktails are flowing. R x

[Fen Hen]

Hurray- well done Egg!! Really pleased for you x

A FB group sounds good to me, thank you Suze for offering to set that up.

I'm at the fluffy hair stage too, it's a bit patchy but definitely getting there, it seems to be a bit darker every day. Sadly I think it's going to grow straight out like a toilet brush -a very grey one - think I'll be in a hat for a while yet.

Xx

[Suze123]

Egg - you made it! Well done! Really, really chuffed for you. Xxxx

Esther - I found my Nordic Walking course via the Nordic Walking UK website https://exercise-anywhere.com/ Have a look for a beginners course in your area... there's a few other websites offering similar activities. I did the Penny Brohn course in Stafford over two separate days rather than a residential. They do a few across the country like that. I've also signed up for the Macmillan 'hope' course covering "Moving on" after treatment. I'm throwing everything at it!

Blue - I'm not back at work yet, meeting them tomorrow to discuss when and how I go back. I want to take my time as I know it will be full on!

Quick hair question... I too am at the baby hedgehog stage but the colour is odd. Sort of 'dull dormouse meets vacuum cleaner fluff'. Where have my brunette locks gone?! Don't get me wrong, I love having hair but I had no grey before. My eyelashes are coming back but they are now blonde! What's that about? I'd prefer it the other way round....;)

As for Facebook, I'll set up a group and then probably work out how to get us all on there. We'd maybe need a couple of us as administrators on there that can add people etc. Also, I can maybe do some set up instructions for people wanting to join FB just for the group! 

Suze

xxx

[Esther c]

Well done Egg!! Welcome to the party - There's a fresh batch of sausage rolls for you!

I'd be up for a Facebook group and I'm pretty sure for those of us that aren't regular facebookers you could join and just sign up to the group.

I picked up my prescription for tamoxifen today. I have to say my gp has been so very supportive through this. I don't see her very often but she really is great - always has the tissues at the ready! She has suggested that counseling may help with my fears and anxiety, so am going to investigate that.

Xx

[Slowski]

Egg,

Well done, gold medal for endurance!

I love the idea of having a private group but I'm not on Facebook either. Am completely ignorant about it - is it possible to join and just be in that group?

Beedot, ROFL at hair comment !

[Beedot]

Congratulations Egg! What a great feeling, all of us across the line and ready to party. 

I'm not on Facebook either although I keep meaning to join. In the past I've partly resisted on the basis that I didnt want to be notified every time someone washed their hair but actually I am very interested in the progress of this group's hair!

Robin, I am also interested in your fingernails - did they come off completely? I can see that a few of mine are on the way but they seem to have a few mm of normal growth at the bottom so I don't think they are starting again underneath yet.

Suze, I like the idea of Nordic walking, I have been swinging my arms when out walking with OH and the dog because it feels like good exercise so it makes sense. Re the add aspirin trial, I am tempted to self medicate on the basis of what I read about the previous studies, no one has yet mentioned it at the hospital although it is apparently participating. One of the radiographers asked me today what I do for a living because she said I ask so many questions, so maybe they dont want me in it!

Hugs to all, Beedot x 

[EggG]

Thank you everyone for your kind messages and also to jackie for my certificate. Finally I got one and I can join the party! I hope there's still some sausage rolls left and you haven't all gobbled them! 😜
Suze I'm not on FB so can't join you all. Have resisted joining for many years!

[RobinJ]

Egg - hooray! Well done! At last our chemo party is complete!
Suze I would definitely be up for joining a private Facebook group.
My brain is still in chemo brain mode too!
Reading about other people's experiences of having biopsies taken while in the mammogram squashy machine reminded me of when that was done to me pre mastectomy ten years ago. The nurse helpfully said to me beforehand we keep taking biopsies until you cant stand the pain any longer. Great.
I have lost or am losing six finger nails now. So I now have more short raggedy ones than proper ones.
My hair has reached the stage somewhere between Sinead o Connor and a baby hedgehog. But I got offered a seat on the tube again today so I think I am still recognizably a baldy.
Radiation redness getting a bit better but I still have to visit the nurse.
Following all your stories and wishing you all well. R x

[Scotty66]

Well done Egg! So pleased for you. I know what you mean about the herceptin. It doesn't feel quite over does it?

[Wtp2016]

Yay!!! Fab news Egg!!! Its such a relief, isn't it 🙂

Jackie - great to hear from you - hope you're feeling ok and the throat thing isn't permanent? These side effects just keep on coming, don't they 😞

Suze - I agree. I sometimes worry that people I know will find me on here as lots know I use the forum - added to that, they know when I started chemo and I posted a photo of me so it wouldn't take a genius! The thoughts, frustrations, rants that I share with you teddies are for your eyes only so a secret FB group would be great.

Def up for visiting Jackie! My MIL has an apartment in Spain too which we're hoping to get to once my treatment has finished. I don't think it is near you though as I seem to remember that you live somewhere untouristy and her apartment is very much in ex-pat non-Spanish speaking territory!

Lots of love xxxx

P.S. I hope we might hear from some of the ladies who were in the forum when we started but disappeared - Ali, Star, Stefr etc - hoping that they made it through ok too xxx

[Jackie1952]

To EggG

I am more delighted than I can say to award our final teddy warrior chemo badge and certificate to you.

 

For bravery and fortitude, well done!

[Jackie1952]

Hi Ladies,

Firstly, sorry for the long non appearance. I'm struggling with the radiotherapy journey, and have developed radiation oesophagitis.................just a fancy name for feeling like there is something stuck in my throat. All fairly normal I'm told.

I have 10 (out of 25) sessions left, and compared to chemo it's a breeze.

I have been following all your comments, but have nothing to say, as your treatments are all so different to mine.

I am however so sorry you are feeling so worried about your futures.................can't blame you. I'm nearing the end of my actual treatment plan, having started off with the mastectomy, so I can understand your fears.

We will still be together, however long it takes.

Suze123 - I had been thinking about a Facebook group myself, so please count me in. It's a great idea.

And I would be SO happy for you all to fly over here................at least we could get the cocktails and sun. xxxx

[Suze123]

Hi ladies

I will do a longer post tonight to answer stuff but wanted to get your thoughts on us potentially setting up a private Facebook group for all us Jan 17 starters?

I know that the February or December starters did this. My thinking was that sometimes we are posting really personal thoughts and feelings on here for anyone to see. Although we have user names this stuff is all searchable by Google and someone could potentially build up quite a few facts about each of us (trust attending, geographic region, age etc). In a private Facebook group, only we'd see the comments.

We could set one up that was private and by invite only, and restrict it to all those who've been on the journey so far? I'm sure, like me, some of us have developed good relationships on here and really care about each others' battles. In some ways we are closer than some of my more obscure Facebook friends! 

i think we could still run this thread too and invite others to join later on if they started posting but I'd like to continue this community for a while and wonder if it's time to do this?.I'm sure, like other groups, we might organise a meet up in due course maybe (we'll all fly over to see Jackie!).

What do people think?

Suze

xx

[Blue2]

Whoop whoop, hooray, yippee Egg!
Our final 'chemo Jan 17' member is done with chemo!
X

[EggG]

I AM DONE!!!!!!! No more chemo! Went to the ward today as I've been having a lot of side effects of numb fingers and toes, plus palpitations. Anyway my oncologist decided it would be safer not to give me the last cycle, as she said after 13 cycles it wouldn't make a difference to miss it! I will still go for 3 weekly herceptin injections, so it doesn't really feel like I'll be away from the chemo unit, but at least no more cannulations and steroids!

Blue - my chemo brain is awful. I am swoppping words all the time (my sentences make no sense) and also forgetting people's names - and these are people who I know really well! I introduced a really good friend of mine the other day as Prunella! I have NO idea where that came from. A friend of mine who finished her chemo 3 months ago said it does start to get a bit better as time goes on, so I'm holding onto that. Like you I also have the hot flushes so am slightly dreading starting the hormone treatment which I can only imagine would make it worse🙄

Jackie how are you getting on? I think this may be your last week of radio so hopefully the journey is not too tiring for you.

Big hugs to all
Egg x

[Blue2]

Joking aside re chemo brain Egg, how is it really for you?! I am starting to get really concerned as my vocabulary, concentration and conversation are still way behind what they were pre chemo and I'm now nearly 6 weeks post final treatment. Yesterday, I couldn't say 'blue' when directing my husband to something! It went like, ' next to that......(hesitate, stumble, nothing come out of my mouth for 10 seconds)......red...purple...green....blue pot'!!!! On one hand it's slightly amusing, but on another, very concerning, upsetting and frustrating! I'm hoping to go back to work in a couple of weeks but really don't see how I can perform my role like this?! Plus, the hot flushes are still as severe - I was hoping they would settle a little post chemo - and i become burning hot and break out in a sweat every hour or so. Not very professional! It makes me want to hide myself away!
Are you back at work Suze? I'm hoping by going back I can become more like myself again, have a focus and distraction and not be consumed by this disease anymore. My friend who is 11 years clear and was triple negative stresses that piece of mind does come, but that its slow and builds up as time moves on. She understands when I say I'll never be the same or have piece of mind again and she also understands that I can't understand that concept at the moment as she was once in the same place!
X

[Esther c]

Suze you mention Nordic walking and penny brohn are you doing this as their national centre near Bristol?

[EggG]

Sorry posted twice! Thought it hadn't gone through he first time. You'd think by now I would know how to use the forum! Chemo brain strikes again! It's getting really bad now😖

[EggG]

Thanks Wtp have looked it up and will give it a go

[EggG]

Thanks wtp ive just looked it up and may give it a go

[Wtp2016]

Ahh thanks Suze! 🤗💞 spoke to my BCN earlier and she's going to push for the results by weds 😬
Egg - if you're based in London, this is the personal trainer who did a talk at the Younger Women course - http://www.oomph.london/ she also did a demo of Nordic walking and said it's particularly good for cancer peeps. She also does a free running session in Hyde park on Tuesdays - couch to 5k. I might try to go along at some point (although with surgery and rads coming up, I'm not sure when 😬).
Xxx

[EggG]

Hi Suze - which hospital are you at? You could phone your BCN and ask her about the trial perhaps?
Where did you find your personal trainer? I really want to start some fitness but slightly anxious about doing it myself after months of doing nothing and having all the chemo.
Egg x

[Suze123]

Hi everyone

I asked my Onc about participating in the add aspirin trial and she's done nothing about it. I don't see her again. Has anyone else thought about just taking it? It says on the trial page that my trust is participating though. Yet another issue I have to chase and push by myself.

The trial pages say not to do it yourself as the quality of the drug might not be the same but, really? If Egg's onc says we could just take it anyway.... wouldn't we just do that? They do eight weeks at a low dose first to check you're ok with aspirin and then up it. Trial doses are 100mg or 300mg daily. I'm confused. http://www.addaspirintrial.org/treatment_in_the_trial/ 

On another note, I have a personal training session booked this week with a trainer who is a CAN specialist -  trained in helping people with cancer get their fitness back. I have also started learning how to do Nordic Walking which is meant to be good for bc patients and our flexibility. Only done one session so far but it was really good and I managed an hour's walk and burned 500 calories! All without feeling too tired. I can recommend it!

WTP, not been on the boards for a few days as I've finished all my treatment now and am two weeks past radiotherapy. I just wanted to send you a massive hug  🤗 as I know how tough all this is and wanted to let you know I'm thinking about you.

Blue2 and Slowski -  I am also suffering anxiety and worry. I'm having no hormone therapy as I'm triple negative so I feel quite abandoned. I'm seeing the radiologist for a six week post rads follow up and that's it until Nov when I have a mammo booked. I have spoken to my local day hospice about some counselling, I've been on the breast cancer moving forward course and the Penny Brohn course... not sure what else to do!

Scotty 👍👍👍👍👍 Great news, really chuffed for you! 

Suze

xxx

[Wtp2016]

Blue - thanks for your message. It's good to know I'm not the only one projecting my anxieties onto everything the docs say 😩 He gave me a massive hug at the end which I guess was because he knows it's such a horrible procedure but I kept thinking it was because he knew something sinister about my situation... good luck with your results this wk - I'll be thinking of you! 🍀
Egg - that's what I thought too 😬 I'm booked in for the 6th July with guidewires going in on the 5th. I checked that it's ok to fly after so booked a trip to Sweden on the 12th... then get a random call from my BCN asking for me to come in for this biopsy - she didn't tell me it would be a series of biopsies or any different to the initial one. She was quite clueless about it to be honest. I quizzed the radiographer and he said if it turns out to be cancerous or precancerous cells then I'd need to change op to mastectomy as it's a large area. But as the team all expected mx the whole way along, in their eyes it doesn't really matter - however, to me they gave me a glimmer of hope in having the smaller op so now I'll be really disappointed. Not to mention missing my trip (visiting a very good friend just before her baby arrives!). I know in the long run it is all to be safe and obvs preventing recurrence is so much more important than saving a breast or a trip but it's the constant curveballs that this stupid disease keeps throwing - doesn't help with the anxiety 😩
Egg - try not to worry. In the words of both radiographer and onc, mine is " not a straightforward case" (which are? 😂) so I think it's not normal to need this after chemo xxxx

[EggG]

Blue - like you my team never volunteers things either - I had to ask them about the hormone stuff and had googled various trials etc to ask them about. I don't think I will be seeing them now until after the rads and I haven't had an appointment for that yet either - but I won't be starting rads until Sept! It seems so long away!

[Blue2]

Egg/Lighthouse, thanks for the info re hormone therapy etc - I will certainly look into it and ask for an appointment with my onc/surgeon to discuss it once I'm through this surgery stage and onboard with radiotherapy. I worry sometimes as think I know much of what I know only through everyone on this site, not from the people caring for me! My team have usually been OK when I have asked them about things I have learnt on here, however they never volunteer anything so I wonder what else I'm missing?!!

[Blue2]

Scotty - I hope your wound starts to settle down soon. Did you still have dressings on from surgery? I'm wondering how you knew it was infected? I have had my drain out now and occasionally when I move quickly, I hear an internal sloshing! I'm not too worried about it though - I'm hoping my body will reabsorb it. My arm movement is improving and the exercises are easier, but my armpit it very tender and maybe more painful than it was initially even though I'm taking brufen 3 times a day and codeine inbetween. My dressings are still on and will be til Thursday, so I can't see what's going on! Or examine the surgeons handy work!
WTP - I had those biopsies under mammogram at my initial diagnosis - they took 6 - i remember it was uncomfortable and traumatic but I was in such a daze so I think didn't grasp the full extent of what was going on at the time. I hope the results are OK and you get some answers quickly. I think when we don't know what's going on, we automatically think the worst and worry and the drs don't tell us everything as think we already know what they're going on about/thinking, or sometimes, they don't actually know themselves!. Maybe they want to repeat the mri and use contrast or something different to your last one, to see how the ghosty/calcification area shows up? I feel that I get those looks from my team sometimes too - like they know/suspect something but aren't telling me - but i think its really my anxiety and not having all the facts that is putting a spin on things. I've even considered requesting copies of my medical notes more than once throughout all this, so I can get all the information, rather than it being given to me in dribs and drabs. And I'd absolutely love to be a fly on the wall during the MDT meetings about me!
I am hoping to get my surgery pathology results back this week......Gulp.
Hope everyone is OK?
X