Chemo JAN 2017

[Slowski]

Wtp, all the very best for tomorrow, so many of us will be thinking of you.

Let us know how you are when you can.

Slowski X

[Esther c]

Good luck for tomorrow wtp. Hope all goes well. X

[EggG]

Beedot - like you I have been cleaning! I use it as my gauge for getting better - measure my breathlessness by how many rooms I can hoover before I get out of puff! 😂

[EggG]

Dear Wtp - best of luck for tomorrow. I will be thinking of you and hoping it all goes to plan. You will be one step closer to "cure" as the oncologists like to say!
Big hugs,
Egg x

[nickyh]

Hiya ladies

Ebim - have a lovely time in Spain. Enjoy the sunshine and the sangria!

Blue - following my mx back in November I developed a huge swelling under my arm. My surgeon said to just leave it but after a week or so it was really getting me down so I spoke to my Bcn and she said to come in and she drained it for me. It was such a relief to be able to have my arm by my side again and the although some fluid came back it was a tiny amount and that then disappeared on its own accord. So maybe talk to your Bcn and see what she says and over emphasis how uncomfortable it is.
Having your results delayed really sucks....but will have everything crossed for you on Friday.

Wtp - good luck for tomorrow. I remember standing in front of the mirror the morning of my operation and saying goodbye to my boob...sounds crazy I know. I also cried as I said goodbye to my husband and was taken through to have my anesthetic.... So what you are feeling is completely normal. Like getting results the worst thing is the waiting part...just remember it is part of the cure.

I hope everyone manages to enjoy a bit of sunshine.... Have school sports day tomorrow but not sure I have the energy for the parents race and do I trust my wig to stay on whilst running?!!

Nicky x

[Wtp2016]

Evening ladies, I've picked myself back up again, not quite back to "normal" but better than last Friday!
Blue - that sucks, I think they forget how awful it is for us waiting on these results. Good luck for when you get the report 🍀
Just confirm I'll have my mastectomy on Thursday. Had a good chat with the surgeon on Monday night. I won't be able to have recon so trying to gear myself up for adapting. The surgeon told me that a lot of docs will not do recon if the patient has inflammatory breast cancer (as I think the recurrence rate is high). He says he is more open minded but it would be better to deal with the cancer now and maybe look at recon in a year. They also want to do the op ASAP and the plastic surgeon wouldn't be available until August... 😩
Anyway, a good look at my daughter and a reminder why I need to put life before aesthetics etc but it still sucks...
Dreading the moment before they put me under!
Did anyone else have any sort of goodbye ritual for their boob or just pleased to see the back of the cancer? I'm feeling really sentimental about it...
Lots of love to you all xxx

[ebim]

Thanks for all your good wishes, I am hoping to be able to keep up with you all whilst away. 

Scotty - hope I got it right.....good luck on Thursday.

And Wtp too.

Beedot , it was like coming out of a dream - couldnt believe the mess the house was in, and it was all mine!

normally the tidy one out of the two of us, I was shocked at all my clothes strewn around.  Its looking a lot better now - it has to we have a friend coming in to take care of Max (the dog ! ).  We all put our energy and efforts into dealing with the chemo that something had to go, in my case a tidy house !

Egg - you have had such a bad time of it, the side effects will lessen each week but it does seem to take an awful long time.

Love to everyone Ebimx

[Beedot]

Hi all,

Congratulations on finishing Ebim and enjoy your holiday. 

Wtp, good luck with your surgery which I think is later this week.

Blue, sorry to hear about your seroma and the wait for results, I know how crushed you feel when you have prepared yourself and then they are not back, it's agonising to be in that limbo period.

Egg, I felt really washed out after the final chemo, heavy limbed and achy, swollen ankles etc. fatigued for the first time. I put it down to getting increasingly aneamic. It took me a good 4 weeks to recover. Last week was 5 weeks after chemo and I felt my normal energy coming back, I started spring cleaning (I have a great urge to get my life and surroundings back under control) and OH asked if I'd started on steroids again.

Plodding on with rads here, another 9 to go and finding it much preferable to chemo so far.

hugs to everyone, Beedot x

[Esther c]

Egg. My herceptin injections are going ok. I don't seem to have any side effects. I did have a runny nose at the beginning but this has stopped. I'm just plagued by aching joints - ankles feet and knees mainly which I'm hoping won't get worse now I've started the tamoxifen. Not sure if it might actually be connected with herceptin thinking about it, will check if this is a side effect.

[Esther c]

Ah blue that's really poor having to wait another week! I had a large seroma after my surgery that sloshed around for quite a while after, my surgeon preferred to let it disperse on its i.e. which it did. Will be thinking of you on Friday. X

[EggG]

Oh Blue, I feel for you, waiting for results is really c**p. Is your drain out now? Could your team not drain the seroma? I've seen on other threads that some people seem to have them drained? It might make things more comfortable?
Egg x

[RobinJ]

Blue, I think waiting for results is one of the worst things about this whole experience. Nobody else gets that except for us. Come on here as often as you like and have a good rant.
Ebim, fantastic that you're finished. Have a wonderful holday.
R x

[Slowski]

Blue,

What a bo**ox that they didn't have your results on the day. Waiting for results truly sucks. I hope the next few days pass quicker than you think and its a good outcome on Friday.

Slowski X

[Blue2]

Congratulations Ebim on getting through! I bet you can't believe you're finally done?/ x

[Blue2]

Hi lighthouse, thanks for asking after me!
I'm pretty low at the moment tbh! As you know, I have been so anxious about my post surgery pathology results for weeks and even drank my first wine in 6 months on Thursday night to distract me and try to help me sleep! And then it turned out that the results weren't even available on Friday after all, even though they should have been! I can't believe that some hospitals/teams can get the results together in a few days or a week, and mine can't get them back to me in 2 weeks! And it's worse than that, I have to wait a whole other week for them, so 3 weeks in total. I am beside myself with anxiety. I can't eat, sleep. Am thinking the worst and am crying again.
Added to that, surgery has been much tougher than I envisaged. I am still taking painkillers after 2 weeks and have developed a large seroma under my arm which is hugely uncomfortable and affecting my movement. I can't even rest my arm down by my body - I am walking like a beefcake bodybuilder......on one side anyway! And my team just say it will settle in time...........keep taking the painkillers and do the exercises......
😞

[Wtp2016]

Ebim - I'm so jealous!! Well done for finishing, you deserve an amazing holiday 😎
Thanks everyone for your support - feeling a bit better today, just have to ride out those low days, ay.
Egg - my biopsies weren't standard so hopefully you won't need them. It was because my MRI showed a suspicious shadow across the breast (not part of the actual tumour). I guess it's because my original tumour was so big that instead of shrinking down to one smaller one which is what we'd thought, it sort of melted away but leaving disease behind spread over a wide area. That's what I'm hoping - rather than recurrence already! They won't tell me until after surgery histology report is in.
Hope you've all enjoyed today's sunshine ☀️
Lots of love xxx

[Slowski]

Ebim, well done and here's to a fab hols!

Egg, yes am on the Herceptin road, done 6/18, all subcut, even the 3 done with chemo as my trust (of which more later) said they didn't have funding to deliver them IV! However, I've found it all pretty ok and fairly painless so far. I did have a largeish lump at the site after 1st or 2nd but it soon went down and didn't really trouble me.

My main problem has been the interminable wait for a 5 minute injection - the last twice it was 2-2 1/2 hours. I have put in a complaint, encouraged by the staff in fact who are clearly overstretched to a ridiculous extent. Not expecting too much to change though, but have managed to get 8.30 am for next one. In terms of SEs its really the drippy nose; I wonder if there'll be any improvement as nose hairs grow back?

Scotty, hope you get sorted too. There are quite a few of us going through this together.

Slowski X

[EggG]

You should demand that you get it IV rather than stop - it only takes half an hour IV if I remember correctly from my infusions so far

[Scotty66]

God I hope so. Onc was so flippant when we saw her. Just casually dropped in that she would stop it. Really want to change to someone else as I still have rads to come which she oversees. Would just like something to go without a hitch. Sorry for rant. You caught me in a bad moment!

[EggG]

I'm having mine Friday too so will be your buddy!

[EggG]

Scotty I remember you said you had had an allergic reaction to the first one, but weren't they then going to give you IV from now on? Surely they can still do that via a cannula if you could tolerate it IV before?

[Scotty66]

I'm having a bloody nightmare with mine! Came out in an allergic reaction like hives. Been poorly managed to be honest. Diagnoswd over the phone as heat rash?! Going to have steriods and antihistimines IV as pre med on Friday. Onc said if it doesn't work she will stop it. In a complete tail spin. Bet you wish you hadn't asked now!

[EggG]

Scotty and Esther - how are the subcut herceptins going? Any side effects? Am having my first one this week.
Slowski - I think you may also be on herceptin but sorry if I have got this wrong - can't remember now who else is Her2+
Egg x

[EggG]

Well done Ebim! Hope you have a lovely time away I'm jealous of Spain! Dreaming of foreign travel - maybe in oct!

[Esther c]

Congratulations and well done Ebim!!! I hope you have a lovely time in Spain! We went away for a few days after I finished and it was so very nice to get away from it all. X

[ebim]

And Suze could you put me on FB list please. Am happy to help with admin stuff
Ebim

[ebim]

With all the latest news, It seems so insensitive of me to say this but I AM DONE! !   Done with chemo, done with rads, done with hospitals until September.  

If wishes could come true I would want you all to be able to say this and I really feel for you having such a rotten time.  You are never far from my thoughts.

I maybe done but I still have nails to come off, toes that don't have needles and pins , sore boob and chest and of course a bald head which I now flaunt in Jackie mode!  

Off to Spain next week and I wish I could take you all with me, now that would be a party.

You are all such a large part of my life now that I shall be taking you with me virtually so that I can keep up with the news.

Much love and hugs to all, Ebimx 

[EggG]

Thanks slowski, I haven't been organised enough to keep a symptom diary during this but I'm glad you have!
I've just had a letter through the post asking me to come for a breast biopsy this week, im not sure why? My surgery is booked for 2nd Aug and I think it's planned for lumpectomy and node dissection, so not sure why now this as wasn't mentioned at all when I saw surgeon. And of course it has come on a Saturday so I can't even phone and ask 😖
Wtp I know you had biopsies pre surgery, is it routine?
Egg x

[RobinJ]

Wtp I don't think you're being over sentimental at all. I think you have perfectly summed up in your post how we all feel about the support we get on here. Your words about wanting to be a good strong example for your daughter are very touching and sum up what we all feel. We stay strong for those around us.
Jackie keep going. The end of rads is in sight I thought I would miss the daily routine of it when it ended but I didn't at all and now it seems a distant memory. Although I still have the sunburn!
What is the add aspirin trial? Is taking aspirin something worth doing?
Hope you all have good weekends. R x

[Jackie1952]

Hi EggG

Unfortunately I haven't finished rads just yet.

I still have 6 to go (out of 25), but rest assured I'm crossing each day off.

Thank you so much for thinking of me. xxxx

[Slowski]

Wtp glad you went out with a real-life friend - I'm sure all us onlne buddies have been holding you in our thoughts these past couple of days and were helping you drain that bottle in spirit!

Egg - yes to lots of joint pains after chemo and also was the most fatigued I have been at that point. I've just had a quick look back at symptoms diary I kept and it took 2 weeks before I saw the word 'improving'. Hope that helps.

X

[EggG]

Jackie - I think you may have finished radio now? Hope you are not too tired!
Egg x

[EggG]

Wtp glad you went out with a friend - hope no sore head today! lighthouse I feel the same as you I often look on the thread to see what everyone is up to - now that chemo is over it's onto the next stage with all the different issues, so it doesn't feel like it's ever over!
Quick query - did anyone else have lots of aches and pains once chemo finished? I know it's only a week since I finished but since then I seem to have developed all sorts of joint aches and am so tired! Maybe steroid withdrawal?
Hugs to all,
Egg

[lighthouse07]

Morning - wtp, pls dont apologise for posts i never feel anyone rambles. Xx its what the forum is for. I think the whole blinking thing is surreal, everynown again i get a paralyzing moment when i think about whats happened and especially the what ifs for the future. As time goes on i feel i want to hear more from everyone as you are all so often in my thoughts. So definitely not rambling xx
Blue did your path results come back yesterday? How's your recovery going?
Love to all xx

[Wtp2016]

Thank you all so much!
I met a friend for dinner (and wine!) tonight and was telling her how as much as I absolutely hate this "journey" it has also (cliche alert!!) grown me spiritually in more ways than I'd ever expected. I've found support and friendship in the most unexpected places - from you awesome people, colleagues, acquaintances etc and have surprised myself by how much I've put up with - I'm sure you must understand 😂
I literally had the most surreal moment just now - nearly 8 months after diagnosis, thinking "WTF?!" "Is this actually really happening and how did this happen?".
I'm 37, married and with one child. I always wanted her to have a sibling but think the menopause well and truly kicked in. I hate that this disease takes away what I thought were my (and my husband's) choices and things I just plain took for granted - another baby, hair, a boob, my work, some so-called friends, items of clothing & swimsuits etc - some temporary, some permanent.
I think I'll get to where Jackie is one day as I read her post and thought "you bloody ROCK!" - if I can be half as confident and brave as you then I will be a very happy woman. More importantly, I want my daughter to seenme set such an awesome example.
Apologies for the rambling long post - slightly tipsy after dinner with my friend and feeling very sentimental! Xxxx

[Suze123]

WTP, so sorry to hear that you're dealing with this news. I wanted to also send you a giant hug and to echo what everyone else has said: we are with you all the way, urging you on to beat the bu**er and cheering on the sidelines as you kick its arse into touch! 

Suze

xxx

[nickyh]

Hiya warriors

Sorry I have been absent for a week or so. Since finishing radiotherapy I felt I needed a bit of head space away from the c word. But you have all still been in my thoughts. Been catching up on what's been happening.... There is so much to comment on!

Firstly, wtp I am so sorry to read what you have been through. Sending you big hugs and don't give up, stay strong and you will still win this battle. I agree it's good to drown your sorrows and have a good cry because sometimes s##t happens.

Egg - well done for finishing chemo, so glad the party is now complete ☺

Jackie - I hope you are doing okay and surviving the heat and the long trips to the hospital. Thank you for my rad grad cert... You are a star 🌟

I am afraid I can't remember exactly where everyone is up to... Could still be chemo brain! But everything you all write is interesting and relevant to where I am at on this journey, so thank you.

I am now 2 1/2 weeks post radiotherapy and my skin has gone very dark and is peeling. I am also taking tamoxifen which I seem to be tolerating reasonably well. I do get hot flushes but nothing too severe. The doctors still can't decide what to give me in conjunction with the tamoxifen, whether to give me biophosphates, zolodex or Ai inhibitors...I am finding it all very confusing and everyone seems to suggest something different.

I am also hoping to get on a new drugs trail which the Marsden hospital is running for pre menopausal women... Which is one of the reasons why I am just on tamoxifen at the moment. My oncologist did mention the ant aspirin trial but felt there were better trails I could go on, but did say there is nothing to stop you taking half an aspirin a day if i wanted to.... Though I am not doing so at the moment.

I have shaved my legs twice and the hair on my head is fluffy and way too grey.....I used to be a dark brunette!

Suze - I would love to be part of the face book group if you set it up.

Big hugs.... Nicky

[lighthouse07]

Wtp - that's just harsh news to hear. I echo the words/thoughts of all that the other warrior teddies have said. Warmest of hugs, you are in my thoughts. Xx

[EggG]

How are you Wtp?

[ebim]

still in my thoughts.  Devastating news and a whole new load of rubbish to absorb, you don't have an alternative...you have to keep on fighting.   And with your depth of spirit you will.  Love Ebim xxx

[Jackie1952]

Dearest Wtp - about my mastectomy.

I can so understand you being worried about how you will look and feel afterwards...............our breasts are very much part of who we are, and you have every right to feel the way you do.

I was very much in the opposite camp.

I was just SO glad to get rid of that boob, that in truth had given me problems for years, that I wasn't in the least concerned about losing it.

I know I keep saying this, but I really DO think my age has a lot to do with it.

I'm 65.

To those who asked if I was having reconstruction, I would answer, " What do I need a boob for? I'm not going out on the pull. I'm not planning on breast feeding anytime soon, and how incongruous would a lovely perky boob look next to my 65 year old gone south other boob?"

I was also very much against having any further surgery...................again my age.

I don't know how many years I have left, and I didn't want to spend them having more surgery.

Life here in Spain is very much more relaxed than in the UK.

When I worked I was booted and suited, and made up 24/7.

Here I rarely wear make up...........it melts in the summer.

I have felt confident enough to go out with my baldy teddy head - I wouldn't have been brave enough in the UK.

My mastectomy wasn't really what I was expecting, as my surgeon didn't leave me flat. He left all the pectoral muscles so I actually have 1 1/2 boobs, and wearing a prosthesis is almost impossible.

So I go as I am - almost Flat and Fabulous, and again, because of my age, I can say, "If anyone doesn't like it - they can look away".

If I had been much younger, say 40s onwards, and living in the UK, I am certain I would have felt very differently.

I am also blessed to have my wonderful hubby who has been so supportive, and doesn't care if I wear a black bin bag, as long as I am well, and I am sure your OH will be the same.

Surviving is the name of the game, and once you have had time to process this huge blow, I know you will arrive at that place.

I hold my head high, and say "This is ME". Deal with it.

Whatever YOU are feeling is right for you - there is no right and wrong.

I have a lot of experience in bra and prosthesis buying if it would help.

Please know you are in my prayers.

[Scotty66]

Sorry to hear your news. Have a good drink rant and a cry. Then come back fighting 👊🏻

[Beedot]

I'm so sorry Wtp, I feel really gutted for you. It sounds like you have a good and decisive team looking after you and as the others have said, hopefully we can be of help and support too, as you have been for many of us in leading the way on looking forward. This bas***d disease kicks out but we wont roll over. 

x 

[EggG]

Dear Wtp I was so sorry to hear this news, had been thinking of you all afternoon but wasn't able to log in until now. It's s**t news and know it's not what anyone wanted to hear. But it sounds like your surgeon is going to get you in quickly and sort you out, which is good.
Hoping you manage to sleep tonight and sending you lots of virtual hugs
Egg x

[Slowski]

Wtp,

All your January 'sisters' are with you on this - I hope you can feel the virtual hugs. We're all in this together after what we've already been through together X

[Fen Hen]

So sorry to hear your news Wtp 😥 that's just rubbish after everything you've been through already.

I've actually found the mx to be the easiest part of this whole thing, I was just glad to have it all gone. It healed really well and I'm very pleased with the prosthesis supplied by the hospital, it's comfortable and you really can't tell. I'm not thinking of reconstruction at all - quite happy with the way things are at the moment.

Thinking of you xxx

[Truey]

Weirdly, the mastectomy didn't affect me psychologically as much as I thought it might. In fact, I feel worse now at the end of treatment when you feel a bit abandoned after all the appointments stop and, as my Trust doesn't scan at the end, I have a fear of recurrence (I know everyone has that and it's normal but it's still disturbing). 

I'd been told not to look at the surgery site until someone was with me in case it was traumatising, however, it was too tempting when I woke up after surgery! Surprisingly it didn't really disturb me. I just felt pleased that the cancer had been cut out. I'm lucky that my scar is both low and very neat. 

At at first when you can only go bra less or use a soft bra it is odd but now with my final prosthesis in place, even I forget about it while I'm dressed and sometimes am surprised when I go to bed and notice the missing boob! Mad, I know!! At the moment, I don't think I'll bother with a reconstruction. I can do everything I did before and even my new swimsuit looks fine. 

Keep strong - it isn't trivial to worry about how you will look and feel about yourself BUT the mx will save your life and once the initial strangeness is over you will adjust. My main advice is to do your exercises religiously. They are a pain in the a*** but did give me a full range of movement in my arm, which is great.

Good Luck with the surgery 🍀 All our thoughts will be with you....

Sue X

[Blue2]

Wtp, I am so, so sorry to hear your news. Your gut feeling was right about the lady's tone of voice on the phone when she rang you after all, not that that's any consolation whatsoever.
I have been thinking of you all afternoon and my reaction to reading of your news couldn't have felt any different if you'd been a real life friend, apart from maybe I'd have joined you in a drink tonight in person! My pathology report post op should be back tomorrow and I've bought a bottle of wine for tonight - my first for 6 months - and so will be having a drink with you virtually!
I don't think your concerns about your body image are trivial at all. I'm slightly 'asymmetrical' following my lumpectomy last week and it bothers me and I suspect it will take some getting used to. Sometimes it's the small things that matter the most.
You sound like you have a great team of people caring for you who are leaving no stone unturned.
Xx

[Wtp2016]

Thank you all so much - don't know where I would be without my fellow warriors (and Sue from Oct group!). My onc told me that the LCIS and DCIS wouldn't have responded to the chemo anyway (guess due to rate of division?) but yes, the IDC is the worrying part and I keep thinking back to my onc's words at my last chemo "don't think we've under treated you in any way - you've had A LOT of chemo". Yet, it hasn't all been killed off... then again, my tumour was really big... I guess that's why? Just back to uncertainty and yet another curveball...
I guess I was still carrying a hope that they would give me a pcr after my lumpectomy and that the residual tumour was all dead.
Sue and Jackie (and other ladies who have not had an immediate recon) - how did you feel psychologically after the op? I don't think I've mentally prepared for it. Sounds so trivial in comparison to trying to prolong my life, I know.
Thanks again, your hugs have well and truly helped 🤗 Xxxx

[Truey]

Wtp, sending you lots of hugs on behalf of the October group. You had a really S****y day!!

Your situation now sounds like my initial diagnosis - they saw calcifications on a routine mammogram and biopsies revealed DCIS attached to a smaller IDC. The IDC is obviously the bit they worry about as the DCIS (and your LCIS) are not invasive. I had an immediate mastectomy and node clearance before chemo and rads.  The mastectomy was definitely NOT as bad as it sounds and even the node clearance hasn't caused many issues. On the plus side too, the surgery and hospital stay will be much shorter and easier to deal with than immediate reconstruction (I was home again in 23h from admission). You can pursue that later as you have a lifetime entitlement on the NHS.

It's a very scary time but everyone is wishing you well. Fingers crossed the IDC is the smallest bit! Scream and shout (and have a drink) then come back and kick the b****** into oblivion! We're urging you on.

Hugs,

Sue xx