Chemo JAN 2017

[Scotty66]

The lumpectomy doesn't take long. With the nodes they don't know in advance. Mine were very deep so took longer. Both procedures are done in less than two hours and then it depends how long it takes you to come to. My dressings are waterproof and look like a honeycomb pattern. Taking the drain out was surprisingly painless. Good luck 🍀

[Blue2]

I've just logged on to catch up and am touched by all the support, thoughts and your good wishes. It really does mean a lot - thank you.
I'm having the guidewire too Scotty - they will do it in the morning before surgery I believe. How long does a lumpectomy and axilla clearance operation take? I'm wondering if OH will be there when I return to the ward or whether he will have gone to collect the children from school?!!! I know I'm having a drain inserted in my axilla which I will go home with as I'm only staying in hospital overnight. Not sure about the dressings - will they be padded? The next few days are forecast to be hot - will I be able to come home in a step into it strappy dress and slot my drain through the armhole??! Honestly! The things that concern me are crazy!! My consent form listed 'asymmetrical breasts' as a possible complication of surgery, and what that actually means concerns me a little. As do the long term effects like reduced strength, sensation and movement in my arm. And obviously seroma and lymphoedema.
Egg, I still have chemo brain 4.5 weeks on. It's one of the reasons I stopped going into work and am now 'off sick' as I can't concentrate or find the words or forget what I am saying! I sincerely hope it passes soon.
Hope Lulu is OK Jackie.
Have a good week everyone.
X

[EggG]

Wtp - what did the younger women together meeting cover? I'm going to look into that esp as I am London based
Egg x

[Wtp2016]

Hi everyone, I've been absent for a while but haven't stopped thinking about you all- esp Egg, so close to the end now - chemo soon to be a distant memory!
Slowski - have you seen the BCC moving on course? I've not done it but heard great things? If you can't go on the course, there is a leaflet...
scotty - we'll done on getting through surgery and still being so upbeat. Blue - good luck for tomorrow! We'll all be thinking of you. Mine will be July 6thand I think I'll be just as anxious. Just think - after tomorrow you will hopefully no longer "have cancer"!!! 🙂

For all the under 45 yr old women - I just got back from the BCC Younger Women Together event in London and can't recommend it enough. An emotional, informative and warm (in more ways than one!) two days, one evening, with 40 women with primary BC. For the first time (apart from on this forum), I could speak openly with people who understand. Did you also know about the Facebook group? I've just joined it.

Thinking of you all often xxx

[Jackie1952]

Blue Egg and Ebim,

I'm having 25 sessions of rads, done 9, so by Thursday I'll be halway through.

I've been better for having the weekend off. It makes a big difference.

I don't think I've had it any worse than anyone else.

My SEs have just been different that's all.

So far I haven't lost any nails, or had horrendous experiences with lines and the like.

I've not had any tremedous fear either - maybe beciuase I'm that much older and  my faith keeps me going, along with a wonderful hubby and son.

I'm more worried at the moment about one of my dogs, a Standard poodle called Lulu who we have had since she was 6 weeks old. Now 12 and healthy as a bull until 2 weeks ago when she stopped eating and was in tremendous pain. Turns out she has pancreatitis, and my vet collected her this afternoon to put her on intravenous fluid therapy.

I have another focus for my worries I guess.

xxx

[Scotty66]

Thanks Jackie

[Scotty66]

How long did it take for the numbness to go? Have you got any long lasting effects?

[Jackie1952]

Hi Scotty,

I had 15 taken out - if there were any left they didn't tell me, so I guess it was full clearance.

The important thing for me was that I started my exercises as per the Breast Cancer Care booklet almost immediately after surgery.

Having the axillary nodes out means your arm will be stiff for quite a while. Mine still is, 6 months on, but it's not a problem as long as I keep on with the exercises.

Also I had lots of twinges for a while as the nerve endings regenerate - again nothing horrendous - just a nuisance.

 Once the stitches are out you will be much more comfortable, and it's important to keep moisturising.

Hope this helps.

xxxxx

[lighthouse07]

Evening all still here but had busy week, even busier weekend and intermittent internet. I'll catch up properly over next day but briefly: Scotty i had full axillary clearance, ask away. Blue warm but gentle hugs for tomorrow you will be in my thoughts. Well done to all whi are finished or closer to finishing active treatment.
Much love to all. X

[EggG]

Hope your recovery keeps going to plan Scotty

[Scotty66]

Had 4 iv and 1 subcutaneous. Came out in skin rash everywhere! It was like hives. Going to have medication first next time to see if that helps. I want to get rid of the pic line so really don't want iv.

was in hospital from Thursday to Saturday.  Was lucky with the drain amount. Took ages to come back from recovery because blood pressure wouldn't drop. Not nearly as bad as I thought x

[EggG]

Oh gosh Scotty - what happened with the subcut jab? I just assumed (wrongly it seems!) that if you were ok with the herceptin IV it would be ok with the jab too. Will they now give it to you IV again?
I will most likely have full node clearance. How long were you in hospital for?

[Slowski]

Scotty,

Not had ful node clearance, had 6 nodes out so sorry no advice on that.

How many subcut Herceptins have you had?

Slowski x

[Scotty66]

Has anyone else had full node clearance? Any advice?!

[Scotty66]

Yes I will. Don't know how many yet. Path report will say whether I'll have them to the armpit too. Herceptin  for a year too. Had allergic reaction to the subcut jab. It never ends!!

[EggG]

Scotty - will you have rads after your surgery?

[EggG]

Blue good luck tomorrow. I hope it all goes well. I will be asking lots of questions once I eventually get there!
Ebim - yes I will be doing rads but have surgery to go first. I am due to see surgeon next week to have a scan and then discuss what op I will have. Had asked onc last week for rough timescales so I think at this rate it will be surgery start of Aug and then rads in Sept. What a journey! But it makes a huge difference to know that you are all on it with me and leading the way!
Jackie - good to hear from you, how many sessions of rads do you have? I hope you are managing to get a rest over the weekend.
I am having real issues now with chemo brain - forgetting everything and using the wrong words! Does this get any better?
Hugs to all, Egg x

[Slowski]

Blue2,

Very best wishes for tomorrow. Compared to what we have been through overall, I found surgery to be a very positive and manageable experience, so I hope you do too; anxierty of course is completely natural but this time tomorrow you will have crossed that hurdle.

We've all got your back!

X

[Scotty66]

Blue

just to let you know I got home from surgery yesterday. Wire guide dead excision and full node clearance. Bruised and sore but not as bad as I thought. Boob bit is fine. I got hubby to take a photo and all looks normal! I was so anxious. Any questions please ask x

[Blue2]

Hi everyone.
Thanks for the good wishes for my surgery tomorrow. I'm so anxious about it today as I am packing my overnight bag. I'm worried about the actual surgery itself, the pathology outcome, the long term effects of axillary clearance, feeling disfigured.....the lot! Like you Slowski, I am convinced my cancer is spreading - every ache and pain I think is it! The lymph nodes in my affected side are aching again too which is reducing me to tears with anxiety though I suspect it's all tied in with my worry about tomorrow! I do believe we will move on from these feelings - others who have been through this journey tell me you do but it takes time. Being in the middle of it now though is really hard!
I think Jackie you have had the worst experience of us all. And even when you finish rads, it's not the end - you still have Bob to deal with and further surgery. It must be tough for you to keep going. But you are.
Ebim, I am becoming quite the hairy mary!! I already have bob length head hair as I cold capped, but some of the hair I lost early on has started growing back and is about an inch long, giving quite a tatty appearance! I have short eyelashes now - they're not quite ready for mascara but maybe in a few weeks they will be. I also have a full nose of hair (lol!!) and stubbly eyebrows. I've even noticed a few leg and armpit hairs making a comeback. I feel so optimistic about my recovery when I see this new growth and my body regenerating....and then I think of surgery and the results and slump back down into woe is me. What an emotional rollercoaster!
We will do the biggest cheer Egg, when our final comrade completes chemo. Not long now.
All the best to you tomorrow Beedot. You're on the home run now!
Hope you're OK Robin, Mooney, Wtp, Lighthouse....?
X

[ebim]

Hi Jackie,

As always humour in your posts even though you are feeling awful.  You have had more than most in the way of side effects and problems.  How many more rads you got to do?  I think you should award yourself a certificate for humour over and above side effects !!  

Our motto could be "Tax Warriors sport fluffiness with pride - we survived chemo "  

Egg only 2 to go - well done you...are you doing rads?  

Esther - well done yoga buddy on completing the course.

Beedot - you always seem to remember everyone - whilst I struggle to include everyone even with copious notes !  Good luck for rads on Monday

Blue - have you got any other hair to join the nose hairs? Good luck to you on Monday - hope it goes well for you.

Good to see Slowski's on the post.

love to all Ebimx

[Jackie1952]

Hello ladies.

Sorry for not checking in lately - the truth is that I am so tired from my rads treatment, and the 140km, 3 hour round trip that I have little energy for writing.

I'm also thinking I must be the only person in the history of rads to suffer nausea and total lack of appetite.

I lost 5lbs over 8 treatments.

My rads doctor says they are just side effects...................has anyone else had them?

Anyhoo..........................

Ebim - your cruise sounds fabulous. Just the ticket. Like you I am now bare headed - it is far too hot here to have anything on my head.

I am sporting my fluffiness with pride - it means I survived chemo.

I have no idea about my op yet. I just know it will be when my rads have finished (9 July) and Ive reconnected with the clinical oncologist.

Please don't be frightened by the possible side effects of Letrazole. My Tamoxifen had the same, but if we read, and were put off by the possible side effects of paracetamol, we'd all have permanent headaches. xxxx

Esther c - sure hope your chemo aches and pains go soon.

Blue - best wishes for your surgery.

Beedot- how your comment about not wanting to shave off your fluff made me laugh. My hubby is ex military so likes things ship shape. He wanted me to shave mine too, to make it look neater. Hell NO!

I've fought for this fluff and I'm keeping it.

T anyone I have failed to mention individually, I'm sorry............I'm off for a lie down...............my brain hurts.

Spoiler

[Jackie1952]

For Esther c

Another brave warrior crossing the rads finishing line.

For fortitude and bravery I am delighted to award this certificate.

[EggG]

Hi Beedot - yes you are right I am still slogging on. 12 down and 2 to go! I will get there eventually!!

[Slowski]

Hey Beedot,

Good luck with rads next week. I am due to finish Thursday so not done yet but SO FAR has been a breeze compared to chemo.

What I am struggling with is the mental side - I keep convincing myself the cancer is spreading and worry about every ache and pain. Does anyone else feel this? I find it quite overwhelming at times. On the other hand I don't want to mention it to the team as dread being sent for more scans and the scanxiety that comes with them. Any tips on how to move forward gratefully received !

Enjoy the heatwave Teddies X

[Beedot]

Hi Teddies, 

just catching up after a treatment free week.

congratulations to Suze, Robin, Fen Hen, Nicky and Esther on finishing rads and Jackie for your dedication on the certificates, I hope you are getting on OK now. 

Egg - I think you are still on chemo but nearly there? anyone else still being zapped?

Blue - good luck with your surgery on Monday.

I am starting rads on Monday, for 4 weeks. I've also got to go back to the chemo unit for a blood test then Zometa infusion which is via a cannula, more blooming needles! it's going to feel like a chemo day and then to round it off, I restart Anastrozole that day too. I use the Macmillan app to remind me to take it since I forgot  when I was taking it before chemo so no chance with current level of memory.

Ebim, you are so brave going bald/fluffy, I haven't plucked up courage to go out like it yet. A number of people have suggested shaving/clipping the fluff to encourage growth but I can't bring myself to part with any of my new fluff. Wtp, how did your's grow so well?

Like you Ebim, my ankles have taken to swelling, I looked it up and sure enough, a well known SE of Tax. I have decided to attribute a late weight gain to fluid retention as eating less hadn't made any difference.

My nails are still on but most have bruises under them and still a bit numb on the tips. Still not much taste but improving slowly and energy is starting to return.

I  wish I was good at eyebrow drawing Esther, I just cannot get them even, I have the Roger Moore type look of quizzical surprise mostly.

Hi to Lighthouse,Slowski and Scotty - Are you still tuning in?

good luck to everyone this coming week with treatments or just coping with the adjustment after it, sorry if I have forgotten anyone.

hugs, Beedot x 

[Blue2]

Hi Esther
Good luck for today! Your tale re the eyebrows was funny - praise indeed from someone who probably sees hundreds of drawn on eyebrows a month! Good work! My attempts would be in the 'no comment' category but fortunately I have new eyebrow stubble appearing so hopefully I won't be drawing them in for too much longer!
X

[ebim]

thanks Slowski for your comments, I might ask if they will change pills to jab, had the same for osteoporosis a few years back and they worked.

[ebim]

Hi Robin,

We too live in a hard water area and I am not happy about buying bottled water, do you think filtered water would be ok?  

Day 4 of Rads today, and I am already tired but think it is the chemo still rolling around my body, which is why I asked if you had any side effects.  I think I will get away with 2 fingers and 1 toe nail.  Hair is now an embarrassing fluff and in this hot weather I dont bother with wig or scarves so the world just has to put up with my bald fluffyness.  And my legs are swollen and achy.  However the awful taste has gone, the streaming eyes are down to a trickle.  For me the taste was the worst so with that gone I can handle whats left.  well it would be nice to have some real hair 

Thanks to all for the heads up on letrozole, I will definitely start it tomorrow.  If my still addled brain remembers !

love to all, Ebimx

[Esther c]

Hi. I am due to start on tamoxifen at the end of June, a couple of weeks after I finish rads which is tomorrow!
Had a meeting with my onc yesterday, man of few words but ok .... he looked at my eyebrows and asked if they'd already grown back. I laughed and said no, I "paint" them on each morning! He very kindly said that he sees a lot of eyebrows being an onc and that mine were very good! Certainly lifted my spirits! 😜
I'm still having chemo side effects of aching muscles mainly and fatigue. The onc did say that if I was going to suffer from tiredness post rads it would kick in next week, if by 2 weeks after finishing I'm not suffering then I won't. It if I do it's likely to take about 6 weeks to improve - hoping very much that I'll be ok.
Have a good day everyone. X

[Fen Hen]

Thank you very much Jackie for the certificate! You are really kind to us all.

Your medication sounds very complicated Robin - I think I've got off lightly with only having to remember tamoxifen, I did nearly forget tonight though, not great for only the second week!

[RobinJ]

Hi Ebim. Yes the Iasobon is very strict! I have to take it at least six hours after food which effectively means first thing in the morning. Then wait thirty minutes before food or drink so can't immediately have breakfast. But have to stay sitting ot standing so can't have a lie in either! Also in hard water areas it's recommended to take it with bottled water which goes against the grain for me as for environmental reasons I rarely buy bottled water. So complicated! But I've got into the routine now.
I'm contrast, the letrazole is very relaxed about how you take it. Don't worry about possible side effects. I've been absolutely fine with it.
Yes still have chemo side effects - mainly lack of hair and damaged nails.
R x

[Slowski]

Hi Ebim and Robin,

I'm also on Letrozole and bisphosphonate, zoledronic acid, as a jab every 6 months for 3 years. I have found letrozole ok, have sore hips at times but had that before BC diagnosis, otherwise I've found it fine. Still got 6 rads to go plus Herceptin.

[ebim]

Hi Robin,

so pleased to hear from you as I have just read the long list of side effects letrozole could have, know I must take it but knowing you have been OK has given me the confidence to start it tomorrow.  Do you have to sit or stand up after taking the iasobon?  My biosphonate I have to for 30 minutes after taking on an empty stomach.

do you still have any chemo side effects ?

love ebimx

[RobinJ]

Hi Ebim. Your cruise sounds lovely! I am also on letrazole and iasobon (a biophosphate), the latter is as you said for bone strengthening and as a further protection. I started them the day I started radiotherapy and so far everything's fine and I haven't noticed any side effects. Hope that helps! R x

[ebim]

The onc was running late so it didnt matter that I was !  He has put me on letrozole and biphosophonates as well for my bones and apparently they also protect against bone cancer he said.  Anyone also on letrozole?

Got to see my dentist first in case I need any treatment as they prevent the jaw bone from healing should I need teeth taking out.  Nothing is simple is it.

Nicky - well done for finishing treatment.  Fizz & cake sounded such a good idea that I got a bottle in Lidl on the way back from the hospital ! 

Robin - well done to you too for finishing, there were times when it all seemed so dark and here you are, no more chemo or rads.  Your sentiments about staying on the thread are so good, we all seem to have bonded and its good to know you are there.

Jackie - what a brilliant job you are doing as certificate mistress as you have done all the way through with your upifiting sayings.  You must be tired as I think you have a long round trip for your rads.  Do you know when you are going to have your op yet? 

Last thing, I spoke to the radiographer about low bath water and not getting the lasered area wet.

Her comment was "Rubbish, of course you can wash and get it wet, just dont rub too hard or have the water very hot" .  Only passing on the info, please dont shoot the messenger !  However I am going to have a few more inches in my bath tomorrow morning.

Love to all, Ebimx

[ebim]

Hi Teddies,

Seems to be so much to catch up on and due to my own catching up (holiday laundry, missed emails, dog walking etc etc) I have only just caught up with you, however you are always in my thoughts whatever the time of day.

Blue - sorry to have worried you with my absence and thanks for the welcome back from you and Egg.

Good luck with the surgery, after the chemo you can cope with almost anything.

Egg cruise was mainly to Spanish ports - Barcelona, Malaga, Cartagena & Ibiza with Gibraltar in the middle.

It put a barrier up between the chemo and life after.  Even if like others the side effects are still with me !

Lighthouse did you get any more info on the exercise course ?  Well done for getting to the finish line.

Wtp, guess we are all in the secret sisters club now.  My bald head (with fuzz) is on show most of the time now - scared the living daylights out of two carpet fitters half an hour ago - I was not at all what they expected to open the front door !  There is some fun in baldness.

I have got more on my list to comment on but am off to the onc to get the news about tamoxifen, will post the remainder later.  like the white rabbit I always run late !

love Ebimx

[RobinJ]

Thank you Jackie for my certificate! And well done Fen Hen for finishing too. R x

[Jackie1952]

For Fen Hen

Wow! Another teddy warrior crosses the active treatment finishing line.

For your steadfastness and bravery, I am pleased to award this certificate.

Well done.

[Fen Hen]

You're so kind Jackie, I hope your rads are going well and your arm is getting better? Well done to Robin and Nicky - me too, it was my last radiotherapy yesterday. Felt a bit emotional, the nurses were lovely, very kind. It is nice having the day off today though.

I hope your skin isn't too sore Robin, it's good that they're checking up on you. Mines red and painful to touch on my neck and the bit that hasn't been covered by my t-shirt. I was just recommended to try and keep it covered, carry on with the e45 and try Aloe Vera. I'm hoping that'll do the trick.

Still got a way to go yet but I would like to thank you all for taking the time and effort to post on here over the past few months - you've all been such a huge help - an amazing bunch of ladies.

Hope you're all feeling good today whatever you're up to or treatment you may be having xx

[Jackie1952]

For RobinJ

The third of our brave teddy warriors to pass the finishing line of active treatment.

For resilience and bravery all through your treatment.

Well done Robin.

[Jackie1952]

For nickyh

Another one of the teddy warriors passes the finishing post for active treatment.

This certificate  awarded for fortitude and bravery in successfully enduring both chemo aand rads.

Well done Nicky.

[RobinJ]

Yes I am done! Last radiotherapy today.
I thought I would feel weird when it finished. But it doesn't really feel like it has finished. I saw the nurse today. She seemed quite concerned about my very red reaction to rads and has sent me home with literally a sackful of wound dressings and a follow up appointment for next week. So what with that, ongoing chemo side effects, the letrazole and biophosphate drugs, and lots of appointments to come, it doesn't really feel over.
But of course it will be nice not having to go every day for radiotherapy. Not to say I won't miss some things about it. I will miss the lovely staff and the camaraderie of the waiting room.
Well done Nicky for finishing yesterday. I'm pleased to join you and now we wait for others to join us. I have no intention of leaving this thread any time soon!
Hope you're all having good weeks whatever stage of treatment you are at.
R x

[Blue2]

Congratulations Nicky!
How are you feeling about it all today? Does it feel like a lifetime ago that you first started treatment?
I can't imagine getting there yet - I still have so much to come, but when I think back to when I was diagnosed in December, it feels a whole world away as so much has happened since then.
Your celebration sounds perfect too. I'm a busy bee socially this week - 2 lunch dates and a coffee date still to come before being out of action for a while following surgery Monday.
Are you done today too Robin?
X

[nickyh]

Hello warriors.

So have finished all my active treatment 😀.

Doesn't quite feel real and not sure what I will do with myself now I don't have daily hospital visits! I had 4 good friends come round this afternoon, who have been really supportive throughout and we had a glass of fizz and cake to celebrate and I have received lots of nice messages, cards and even flowers from friends and family. Feeling very loved!

Thank you all you guys for your amazing support during this journey. I couldn't have done it without you all.

I know this is not really the end, still have appointments and hormone drugs to come but it does feel like I have reached the top of the mountain and it is all down hill from here!

Wtp - I have been on tamoxifen for 3 weeks now and so far it has been fine. I have had a few hot flushes but nothing major. I have drank a few glasses of wine on it and again it hasn't disagreed with me. I do feel my appetite is growing but not sure if that is the tamoxifen or just the getting over chemo but I am trying to be conscious of what I eat and choosing fruit over biscuits (believe me I don't always succeed!)

Thinking of you all and will be here to support in any way I can.

Nicky x

[lighthouse07]

Nicky hope today went smoothly and u feel ok after finishing!!! Whoop whoop xx

[Wtp2016]

Hi lovely ladies!
Just popping in - I'm interested in slimming world too as also gained weight on treatment - and also changed body shape - def more around the middle now! My BCN told me that tamoxifen will "mess with your metabilism" - I guess as it relates to hormones? So I'm also hoping to shed as much as possible prior to starting... says I after half a bottle of wine and M&S chocolate cookies!

Ebim - cruise sounds fab and nice to meet that lady in the lift - it's funny as once you're in "the club", its like there's a whole load of secret sisters out there!

Someone mentioned a residential course for "younger ladies" moving on - they really rated it. Apparently formed some lifelong friends. I'd be very interested in doing that course. It's felt quite scary since chemo stopped. I'm now obsessing that my lump is growing again, even though it most probably isn't!

When you're in the swing of chemo, you want it to be over but now I feel like I don't have any of that special medicine and the fear of scans and doc appts is all coming back to me.

Lots of love to you all xxx

[Blue2]

Hi Egg,
I'm trying to lose as much weight as I can before I start tamoxifen post rads as I've heard tales of weight gain/being unable to lose weight on tamoxifen and am currently about 3 stone too heavy - 1.5 stone I already had prior to diagnosis and 1.5 stone a bonus of treatment!! Although I suppose eating chocolate when everything else tasted foul hasn't helped! Has anybody already taking tamoxifen noticed weight gain/slow weight loss, or is it a myth do you think?!
I did slimming world a few years ago. It's a very easy diet to do and you can eat as much as you like of 'healthy' low fat foods which I liked! Weight loss isn't particularly fast, but the diet is sustainable. I haven't tried weight watchers .....
X

[lighthouse07]

Morning all - im a weight watchers girl but haven't needed to go for a few years. I haven't tried Sw so not sure what that is like. I had a mid way rads review this week with a part Macmillan funded radiographer who has reffered me to a 12 week exercise/lifestyle programme at a local leisure centre. I have about 6 centres to pick from and the cost is subsidised. I have phoned a couple to see what they can offer and am waiting to hear back. Ill let u know how i get on. The scheme is run by Macmillan so not sure if national or not. Have a good weekend everyone. X

[EggG]

Ebim - good to hear from you! So glad you enjoyed the cruise. Where was it?
Blue - like you my armpit and leg hairs have started to reappear and I haven't even gotten to the end of chemo yet!!! I must be worlds hairiest woman - just not on my head!! 😂
I'm also considering Slimming world or something similar to lose the weight - want to try and shift it before starting tamoxifen. Has anyone tried slimming world before?
Egg x