Chemo JAN 2017

[Jackie1952]

Hi all. Sorry not to have posted but I've been whacked by my radiotherapy journey.

Blue I was so sorry to hear your news. I saw it when you posted, and I've been thinking of you ever since. I don't know what to say except please pm me if you feel like it, but know that we are all here if you want to rant/cry/scream.

Slowski/Esther/Beedot/Lighthouse, I thought all my nails were ok, but my big toe nails have gone very thick, and white. I can't decide if it's nail fungus caused by low neutrophils, or they are going to fall off. My fingernails have 6 white lines, not exactly ridges, but I'm guessing it's the 6 chemo sessions.

Chemo - the gift that keeps giving!

 I am really wanting to be part of the Facebook group. If anyone wants to send me a friend request this is me:- edtited to preserve privacy But please put your BCC name in the message.

If all goes to plan, Ebim and I are hoping to meet up whilst she's on holiday - she's only 1 hour away from me, so if she agrees, I will take some pics of the 2017 Teddies on Tour.

My active treatment has now finished, but I would feel bad about shouting it out as so many of you have more trials to come.

I'll just give myself the last badge.

Lots of love to you all.

[lighthouse07]

i have just sent a couple of test pm to some of you as would be interested in the fb pg - most of the time i access the forum on my phone and it seems some of the functions of the forum can only be accessed when on the full site, i have found all sorts of new things this morning! xx

[lighthouse07]

Morning all, sorry not to have posted - I have been reading and keeping up to date but busy preparing for return to work next week. So weird to be heading back after nearly 8 months off.

Blue - I am sorry to hear your news, rant/rage/cry to talk to us ... I hope that you are getting support from your team too and they have a plan you feel good about. Sorry I can't remember if you were hormone postive, if so there are other weapons in the wings to throw at it all too. Big hugs

slowski/esther/beedot - my fingers and toes are the same - all feel like they will fall off at any min, finger nails the worst. What was weird tho, is this didn't happen until many weeks after chemo and no ridges just the whole nail turning milky white and decesending down the nail, not from nail bed up which is what i expected. The numbness is driving me crackers but can't work out if delayed se from chemo or new from the hormone treatment.  I also have developed pins and needles in both arms, some mornings I can't even hold a cup, not sure how getting back to  work is going to be!

Scotty - still okay post herceptin? fingers xxxxx

wtp - hows your recovery going? I would be interested in the fb pg.

ebim - how was your holiday, hope you had some down time xx

Beedot - have you finished your rads yet?

Nicky - did you get on the trial you were talking about, I would be interested to know x

Much love to all, looking forward to meeting you all a bit more in the virtual person if we can organise Fb group!

[Slowski]

I still have numbness and tingling in feet and toes. Also my fingernails feel very precarious, like they might slide off at any moment! I had my port out on Friday and it was fine. It was done under local and didn't take long so hope this is reassuring for anyone else who needs to have this done.

[Esther c]

Wtp, I'll help with the fb page if you want to pm me.

[Esther c]

Egg,I still have numbness in my fingertips and in my feet. Luckily I've only got one black toenail but interestingly my fingernails have horizontal ridges on them and funnily there are 6 ridges! I'm guessing this is the 6 chemo cycles. Anyone else got anything similar?

Does the numbness go?

[Blue2]

Hi slowski, I think you go on 'my profile' and tick the private messages box?
I've sent a private message to many of you. Let me know if I've missed you out and you want one!!!
X

[Esther c]

Hello Blue. Just wanted to say I've been thinking of you over the weekend. Sending you love and hoping you have an appointment soon to discuss the details of your path report.  Take care, we're here thinking of you. X

[Slowski]

error!

[Slowski]

Blue,

Just wrote a private message to you and when I pressed send I got an errtor message and it all disappeared!

Anyone got any idea about settings or anything?

Thanks

[Wtp2016]

Oh Blue, it sounds like you've had a really awful time. I understand that you don't want to post all the details on here. Let's get that group up and running! From what I can see, if I want to start a group I need to get at least one friend to join so will need to befriend at least one of you on FB to get it started - then we can all become admins and add others - I think! So shall I pm someone who is on FB at the mo and we can swap "real" details so we can find one another on FB? Any volunteers? Xxx

[Beedot]

We are all thinking of you Blue, stay strong.

Egg, I still have semi numb fingertips and tight fingers which are making me really clumsy, I keep dropping things, some of my nails are now very black too. The weirdest thing is that every time I nod my head vigorously or look down quickly, I get sort of electric shocks through my feet!

[EggG]

Scotty - how did you go over weekend - no reaction to herceptin I hope! I found I had a really sore leg for the whole weekend on the side of the injection - like I had been doing lots of one legged squats! It's easing off now so it's just my numb fingers and feet I have to continue dealing with. Anyone else had that post chemo? I am like an 80 year old in the morning shuffling down the stairs😐

[EggG]

Dear Blue, have been thinking of you all weekend. I'm hoping that you have an appointment soon for follow up to discuss next steps - I find it's very hard to take in news and results at the time. Need to process it and then go back and see specialists. Anyway I hope they have a plan in place for you.
Big hugs
Egg x

[Scotty66]

Massive hugs Blue. How about setting up the Facebook group? Anyone know how?

[Blue2]

Thanks everyone for your messages, and to Becca too!
The pathology report on Friday contained so many nasty surprises - nothing is clear now. I still can't get my head around it. I don't really want to post the details on a public forum, so will PM you all when I get chance and when I know more.
X

[nickyh]

Blue I am so sorry to hear your bad news. Not much more I can add to what has already been said. Thinking of you and sending lots of love and hugs xzx

[Fen Hen]

What a lot to catch up with - Blue I'm so sorry to hear your news 😓 I do hope you were told that they got clear margins and there's no more surgery. Hopefully your wounds are healing without all that fluid, thinking of you xxx

It sounds like you're doing really well Wtp, especially wearing your softie, I didn't manage that for ages! And you got surgery knickers - I didn't get those, very jealous, they sound lovely!!

Scotty I hope you're still feeling well ....

[Wtp2016]

Oh Blue, that really sucks (for want of a stronger word). I'm so sorry. did they suggest a plan from here? I'm here any time if you want to chat/rant/cry. This is the worst rollercoaster and absolutely none of us deserve to be on it. Sending you hugs and lots of love xxx

[RobinJ]

Blue I'm so sorry to hear your news. We are all thinking of you and sending love. Post more updates if and when you feel able. Sending virtual hugs. R x

[Esther c]

Blue, so sorry to hear this. Thinking of you. Xx

[Scotty66]

Whisper it. So far so good. Still got time for it to happen so trying not to get ahead of myself. Top tip is to lie down if you can. Helps the muscle. Jab should take 5 minutes. Don't let them do it too quick! Keep the good vibes coming 😘

[Becca_BCC]

Hi Blue2, I'm so sorry to hear this, it must be awful to receive this news after everything you've been through this year. We're thinking of you too. Becca at Breast Cancer Care.

[EggG]

Jackie - I think you have finished rads today? Is that right?
X

[EggG]

Wtp I am impressed with you posting the day after surgery. You are hard core!! Hope you get some rest over the weekend.

[EggG]

Scotty - how did herceptin go? I'm still waiting to have mine! Was meant to be 45mins ago!!

[EggG]

Blue I'm so sorry to hear this. Did your team tell you what next steps are? I am thinking of you and sending you hugs xx

[Scotty66]

So sorry to hear your news. I don't have any answers just hugs xx

[Beedot]

Blue, sorry to hear that. Did they get the margins on the tumour or clear nodes beyond the live ones or do you have to have more surgery? Sorry, I don't mean to be nosy, no need to answer if you don't feel up to it.

It's a lot to deal with when you are still low after the surgery etc. 

Beedot x

[Slowski]

Blue,

Sorry to hear your news. What have the team proposed in terms of next steps? I have alwayy found it takes 2-3 days to absorb and process the b****cks that this journey throws at us before coming up for air so to speak and starting to focus on the next stage.

Big hugs and love.

Slowski X

[Blue2]

Well......not good news.
My tumour on pathology was actually double the size they thought it was on MRI at the start of all this and my response to chemo has been poor.
The 5cm tumour found and several lymph nodes were still live, even after all of that chemotherapy! I am absolutely gutted, not only as I feel I went through 5 months of chemo hell and suffered the short term, long term and permanent side effects of chemo for nothing, I am so worried now for my future. I feel like I did at diagnosis all over again. I just want to run away from it all. Can't stop crying. X

[Wtp2016]

Good luck Blue - everything crossed for you! And good luck Scotty & Slowski too!
I had my port removed during my mx yesterday so the heavy painkillers have masked it so well, I completely forgot they did it!
I'm back home now... I'll get my results on the 24th 😬 I don't know how many lymph nodes they removed yet but it wasn't all of them. So far the pain isn't too bad and I almost forget I've got the softie in. I guess it will be a process of adjustment. Post-op adrenaline still pumping... now to remember to do those exercises! 😬 Xxx

[Blue2]

My results are back! Am now setting off for the hospital to get them. I feel sick!
Good luck Scotty. Thinking of you wtp. And slowski, you poor thing, having a port in for so long! What a relief it will be to get it removed - another stage in the getting through treatment! Hope it's painfree.
X

[Scotty66]

Thanks. Going to be an anxious wait over the weekend to see if I react. Good luck vibes to all xx

[RobinJ]

Good luck Scotty, Blue, Wtp and Slowski for today. Much love R x

[Slowski]

Scotty, all the best with Herceptin, hope you have a better experience.

Its all happening tomorrow, Blue results, Scotty Herceptin, Wtp recovering from surgery and I'm having port out - hope its less of a palaver than having it put in !

[Scotty66]

Thanks Egg. I'll be on tender hooks waiting to see if I do react. If I do no more herceptin. Dreading it x

[EggG]

Blue - let us know how you get on tomorrow. It must be a relief your seroma is drained. A pint is a lot of fluid!!!

[EggG]

Scotty - fingers crossed your herceptin goes well tomorrow! I am doing my first subcut one tomorrow so hoping it goes to plan!

[Blue2]

Thanks for the good wishes for tomorrow. I keep going over all the variations of results possible, it's ridiculous.
I asked (begged!) my BCN to drain my seroma yesterday.........over a pint was drawn off!!!! It feels so much better!
Hope all went well today wtp. I hope you are comfortable and that your ward has air conditioning/wide opening windows in this heat!
X

[Esther c]

Blue. Thinking of you for tomorrow. Xx

[RobinJ]

Good luck wtp. I'm thinking of you. Your husband's surgery pants/hairnet confusion is a gem!!! R x

[Beedot]

Brilliant image Wtp! Do it! 

Well done for finding some humour at this point, as ever the waiting is excruciating.

I remember that putting my own knickers on again felt like major progress, those Bridget Jones ones are really not fetching are they. The very best of luck, thinking of you. 

Beedot xx

[Wtp2016]

Thanks everyone - I'm next to go in - probably around 4-5pm 😩 Waiting is awful and I'm so thirsty now! Bloody hot hospital too... sat here in my socks and gown covered in the surgeon's black pen. However, something to make you laugh...
My husband thought that the lovely surgery pants were a hair net 😂😂😂 he was trying to put them on my head 😂😂 can you imagine if i turned up ready to go into theatre with net knickers on my head!! He thought the leg holes were for your ears 😂😂 trying to keep hold of that image for when I go down xxxx blue - good luck tomorrow - will be thinking of you! Xxxx

[Slowski]

Blue,

Hope all goes well for you tomorrow with results - hope I've got that right.

Slowski X

[Blue2]

Have been offline for a couple of days - just seen your news wtp. Hope all goes well, will be thinking of you. X

[Fen Hen]

Good luck Wtp xx

[Suze123]

Be thinking of you tomorrow WTP xxx

[Scotty66]

Wishing you all the luck in the world Wtp x

[Jackie1952]

All the best Wtp for tomorrow.
Will be thinking of you. Xxx