February 2016 starters

[Daisy63]

Yes your the same as me, I am on letrozole because it stops my body reproducing cancer cells. X x x

[Sewing K]

Hi Sue,

I have 2 more Herceptin injections to go. So counting down to the end.

I am not on any tablets, but my side effects are mainly bone ache, memory problems, but I cannot put it down to a certain time after my injection. I have just been calling it Chemo brain. I get heartburn and have had some heart palpatations as well. Plus stomach troubles on and off, runny nose, tickly cough.

I am just waiting until the end of my treatment and then I can see if these are all side effects from the herceptin, or something else. I do not know how long it will take to get the drug out of my system, but I can't wait.

I was told I was on heceptin as I am HER2 positive.

Hope that helps.

Kxx

[Daisy63]

Thank you for getting back to me. I don't know the drugs your on. I am 64 so gone through the change that's why I am on letrozole. I think the herceptin is beacause I have goone through the change. X x x

[Sal]

Hi sue
I have zoladex injections for 5 years is this a similar drug? And tamoxifen for ten.
I find I have a mood dip after three days but I guess it's stopping my hormones.
I forget things even things I just said etc but think that it's from the chemo as my brain never the same again although is improving. Some of it for me is going into menopause so all adds to the forgetfulness. I'm not in herceptin so can't help you there.
Hope everyone is doing ok and well. I think I've only really started to feel more like my old self over last month or two. Xxxxxx

[Daisy63]

Well it's me again, hope everyone is doing ok. I have just finished my herceptin injection and I am on letrozole for 5 years so thay say. I am looking for some advice corncerning the letrozole and herceptin. Now here goes 😩 Do any of you girls get any side effects from these drugs. I find that I get very uneasy about 4 days after my herceptin, my brain does not seem to work as good as it did. My daughter laughs at me because she can be talking to me about something I asked she answers me, then I go and ask it again a few mins later. 😬 I am so tired and my bones hurt. 

The uneasyness is the thing I don't like, I can't live on Valium, I am on antidepressants, have been on them for 10 years so I don't think I am depressed. Do you think this will go once the drug is out of my system?

just got no energy, maybe my age I just don't know.

love to you all

sue x x x x 

[Lellie]

Hi Jan, nice to hear from you. it does seem amazing that we are now at the time of year when we can say 'this time last year...' It sometimes seems that 2016 was one of the longest years ever! I am starting to go back to work (nursing) part time but I do get very tired.

I am struggling with my weight but hope to gradually get it under control! Like you my hair is grey and very curly! Having never had curly hair before (apart from the obligatory perm in the 80's!) I am not quite sure how to manage it - it still surprises me when I see it.

I have had a few problems coping emotionally but things seem to be settling down. I have been told to be kind to myself, as I have been through so much, which I think is good advice for us all!!

As you said the support everyone gave during those months (particularly chemo) really helped to come through and out the other side.

Take care of yourself and I hope you soon get back to your kayak!

love and hugs to all and don't forget to be kind to yourselves, we have come a very long way!

Helen xx

[Kayak Jan]

Hi ladies.

how are you all? I have hospital appointment tomorrow which makes me think of all of you and what we have endured and achieved in the last 12 months. I hope you are all managing to move forward and find peace and enjoyment. I think many of us are coming to the point of annual mammograms. 

Please let us know how you are and what you are up to.

Well I am trying hard to loose the weight I gained and attempting to get fitter. Issues with a painful knee have reduced me to walking as my excersise but I am determined to get back to my kayak! My hair has grown back much thicker than before though it is both very grey and curly. I am planning to do something about it when I decide what it is I want to do! Life in general is still some what of a challenge but I am trying to take it a day at a time. 

Sending hugs and thanks to you all. It would have been so much harder to endure without you support.

Jan

[Shelly212]

Hi All,

Just started the 'Moving Forward'course run by Breast Cancer Care and have to say finding it really useful. In addition, meeting up with some of the people I met on the chemo suite and a number I didn't has also been enlightening and en-riching. If you haven't been invited to one of these, ask your breast care nurses if they are available in your area! 🙂

[Cag61]

Hi all, 

well it's been a long time since I've been on here....I think of you all often as we all went through so much together. Jan, how are you? 

Well, I've moved house and am loving it. Decided to move out of a flat and have a garden again which I am enjoying pottering about in. I can't believe I ever had the time to work, busy walking, eating healthy meals and catching up with friends. I have become a lot calmer and really enjoy life....even the little things. 

We really have all been on one hell of a journey. I try and stay positive an not have negative thoughts but not always possible. I have my first hospital appt in December to see how things are.....that'll bring back memories. 

Sending love to all of you. Carol xx

[Lellie]

Hi All, it has been a long time since I have been on this site! Hope you are all gradually coming to the other side? It's hard to believe it's nearly been a year since diagnosis!

I am starting to feel better although I still get tired at times and also emotional. I think once all the main treatment has finished it gives you more time to realise the enormity of the thing we have all been through.

My GP doesn't want me returning to work until after Christmas and then I will try to start part time. That's not always easy as I work in a boarding school and it is VERY full on during term time! I shall have to do my best to pace myself though.

It will be nice to hear how you are all getting on so that we can celebrate together our up and coming anniversary and getting through it!!

love to all Helen xx

[Kim555pink]

Daisy, I'm from the Jan 2016 starters and once a week drop in on this forum to see how everyone is. The Jan thread is still fairly active as we update each other on how we're doing especially as we're coming up to our 1 year anniversaries of being diagnosed.
I'm still getting pains where I had my masectomy and reconstruction - nipple pain but I don't have one!! Seeing my surgeon end of December so I think I can wait until then. One year anniversary mammogram is the week after next!
Good luck and best wishes to you all as you approach you anniversaries
Kim xxx

[Daisy63]

Hi was wondering if anyone uses this any more x X X

[Warcol]

Sue
I'm day 11 of 20 for rads and my skin has started to breakdown but the skin nurses have given me dermol, cooling pads and granugel which so far is helping with the itchiness and soreness! It may be a good idea to ask your GP for some of these to help your boob!
Colista xx

[Daisy63]

Well girls it's been ages since I have heard from some of you. As for myself I am still not quite right had the lumpectomy, I am having herceptin injections every three weeks plus I have been put on tablets now letrozol I think that's what it called. I am still tired most days everything is an effort don't know how long this lasts but getting peed of with it. I still get out of breath which don't help. Feel like I am pushing 90 now. The boob I had radiotherapy on is still sore and sometimes it burns, have been putting sudafed cream under boob as it's been very sore. well let me know how you all doing.

sue x X X 

[Shelly212]

Jan,

You have come through all of that - you are amazing! It's so true thought that once you've been touched by cancer, every niggle is a worry. I too am struggling with my weight and fitness but I will succeed! Everyone in this group has come so far and we will all go on to live our lives to the MAX!

We will all have times when our 'happiness meter' is low or empty but that's when we will appreciate the support of this group and other friends around us.

Thanks to everyone for their contributions - be them positive, rants or when we are low 'cos it shows us all we are normal and we can get through it!

🙂 

Shelly

x

[Kayak Jan]

Hi all
Been quite a while since I contributed. Been going through a particularly rough time lately so didn't feel I could contribute positively. As my gp put it so succinctly my "happiness meter has run out".
On a positive note I finished rads on 5th July , so active treatment is complete for now, apart from daily hormone therapy. Hair is growing, very grey but full head covered so I will take that. Will deal with colour at a later date. Eyebrows and eyelashes 👍. Have a very hairy face and neck but light coloured so not too visible. Very like new born baby down. Hoping it will just go, going to give it a couple of months to see. Still battling with weight and fitness level. Started to get back to various activities but have developed a painful knee and shoulder. BC nurse has arranged for me to go back to clinic to get it checked. Fingers crossed it is nothing serious. This *** disease makes me paranoid.
Sadly my mum died of breast cancer with secondary liver cancer just before my treatment finished. This was followed by the death, also cancer, of my ex husband. We were together for 20 years and had 3 wonderful kids together.
On a brighter note I now have a very beautiful new granddaughter ☺ . I have 2 other grandchildren whom I rarely see but I see this little one every few days.
Wishing all those of you completing your treatment the best of luck. The end is in sight. Look after yourselves.
Sending you all hugs and hope your happiness meters are filling daily.
Jan

[Sal]

Well we only went to Spain for four days. Started feel unwell and all my joints hurt plus temp and wee pain!! I think I had infection for whole maybe from end of April. Got wheeled into plane on a chair haha how embarrassing and straight hospital in Leeds.
How you finding the rads Emma? It's not so bad eh but tiring and hard going every day. You're also on hormone injections? Do you're joints ache? Gosh what a long thing this is eh! So glad you're getting near to the end. When does this end!!!! Xxxxxx

[Emmajane]

Sal that's great! Grab it and live life to the full! Sorry to hear u ended up in hospital. Were u abroad? Great that rads have ended. I'm on 6 tomo of 15 X

[Sal]

Hi ladies
Well finished radiotherspy end July. Went on holiday 4 days end Aug and got a water infection was in hospital 3 days! Been back at work for one week properly with kids back. Going ok very tired and ache lots from hormone inhibitors but ok. Same few low days, worry about any new blobs that arrive on skin haha!!
Moving house on Saturday in with my girlfriend as decided time is to live for. Have to commute but will be happy if tired! Don't sleep much still but life is good! Xxxx.

[Emmajane]

Hey I'm on rads now too had 5 of 15. Yes still have low times I guess that's normal... Most of time positive have to be with a 4 year old who's just started sch. My op went well and I'm hoping my implant behaves during radio therapy... Love to all ❤️

[Lellie]

Hi All, how are you all doing? I have now started radiotherapy, only had two so far. Hair is starting to grow back - even had to shave my legs the other week which was a novelty!! I am really hoping for some curls although it is definitely very grey!

Hope you are all well and reaching the end of this ordeal. Still having times when I feel really tired and weepy but I suppose that's to be expected after all that has happened this year?

Be good to hear how you are all doing. Best wishes to all.

Helen xxx

[Warcol]

Fab news Carole, enjoy your time until after Xmas you deserve it! I've just had lumpectomy and ANC so a bit sore but manageable! Going back for results on 6th! 🙏🏼 for clear margins as then can move straight to rads and complete the end of my journey! Hope everyone else is enjoying the British summer xxx Colista xx

[Shelly212]

Carol, FAB news! You're almost at the end of that stage of treatment and sounds like you are moving forward with the rest of your life - awesome. Funny how small cellur changes in our bodies lead us to make big changes in our lives!

Good luck with the move and Congratulations!

Shelly

x

[Cag61]

Hi all. 

It has gone very quiete on here. Well, I have 4 sessions of radiotherapy left to do .......thank goodness !!!! How are you all doing. I've looked back on this year and wonder how I've had the strength to get through all this, but I have. Thank you all for your support and humour which has kept me going. 

I am moving house soon which has given me something to look forward to and have taken voluntary redundancy from work after 12 years of working at the college. It was a big decision but have decided I need a stress free life ! I have taken on everyone's else's problems over the years and worked full time so am going to enjoy myself until after Xmas when I will find a job. 

I have made lots of plans for the next couple of months as I feel that I became a bit of a recluse whilst having treatment to avoid infection. 

I will pop in from time to time as I'd like to stay in touch with you all, 

sending lots of love to you all. Carol Xxx

[Shelly212]

Expander replaced 4 weeks ago and still tender but feels much better. Unfortuately surgeon didn't put any fluid in as didn't want to stress the sutures so going on 26th AUgust to get 1st fill of new expander, (have to accept I've gone backwards and not stress about it), and hopefully put a time schedule in place re ext surgery. 

Hope you're all enjoying the sunshine as according to the BBC we only have it this week ubtil Friday! 🙂 

[Daisy63]

Hi ladies that's the sprit it's nice to hear how you are all doing. My boob is looking fat as if there not big enough already, stitches healing well, but boob still sore. It looks like to have got something stuck in my boob God knows what they did. Lol lol. I have one floppy boob and one hard boob but what do I expect from them as I am 63 not 23 so I surpose they think I don't mind. Eyes still running just like my nose. Bone pain with herceptin, and I am still tired. I still don't have much enagy but I think that's just a age thing. 

Keep up up with the catch up ladies.

love sue X X X 

[Sal]

Hi all
Well seems we're all getting there at last. Sorry not been posting. Went back to work on Monday just for a few hours a day. All rather strange but ok I'm not doing much made a few coffees and teas and couldn't remember who wanted what!! Won't start to therapy kids till September so hopefully my brain will have returned. Finished radio therapy which was fine. A little tired still but alm ok. Went out on sat and made an ass of myself after supping too much vino and reslised my body said no but brain said yes!!
Eyelashes slowly returning but I have a large pack of falsies which take a lot to get right! Haga. Hair returned everywhere else and hair browny blonde not s sign of my ginger!!
I'm finding getting back into the swing a little harder than J thought but we will get there!!! Xxxxxx

[Shelly212]

Hi All, 

My eyes were watering and yet my eyes were dry so did use some eye drops but they aren't as bad now. Going to get micro blading done on my eyebrows, semi permanent make up as I am rubbish at drawing them on!

My biggest issue is getting an appointment for follow up witht eh surgeon since I had the tissue expander replaced after the first one moved verticlly and laterally and was half under my arm pit - looked like quasimodo! I just feel like they don't undertand that I need to complete this jpirney and get used to my new normal. I feel like they don;t care any more and if I wasn't a pain in their a..., I cold fall through the cracks. Being Triple negative with no lymph node spread I don;t need radio and can't benefit from hormone therapy so all I can do is get reconstruction and hope for the best!

🙂

[Lellie]

Hi Sue,

I too am now recovering from surgery (18th July) and waiting for radiotherapy. Luckily they managed to remove everything with a clear margin around but, like you, of the lymph nodes they removed (14) 3 were affected.

I am finding the nerve pain/ super sensitivity of the skin of my arm really painful. Am taking Gabapentin but not sure it is doing any good.

My wound is healing but there is still one small area that needs dressing, I am still on antibiotics for infection. I was allowed my first shower on Friday which was bliss! Hair is starting to grow but very grey & white!

Looking forward to a few weeks without hospital visits but need to get this wound healed first! 

Hope you are starting to pick up and enjoy the sunshine (when we have it!).

take care,

Helen xx

[Warcol]

Hi sue
Fab news about getting 90% out! Rads to finish the critter off! My last chemo was 18th July as there was no evidence of cancer in MRI but op on 17th Aug will see if there's microscopic so will have rads like u after! Also having genes test so hopefully get results back in 4-6 weeks!
Feeling ok but get tired quickly! Hair is like bum fluff and coming back white and grey!! Loving the comment about looking like a badger made me chuckle!
Shelly my eyes are watering terrible bcus of no eyelashes and I have minimal brows so I'm hoping they return soon as it's driving me nuts
Love to everyone else and have a great day xxx

[Daisy63]

Hi shelly212, I am the moaner of the group lol lol my last chemo was the 2 nd of June my hair is white with a black growth right down the middle I look like a badger lol. Eye brows still thin, and eye lashes I have got some back. I put nail vanish on finger nails and the have ridged but still have them. Toe nails look bad but I don't worry about them. I am having herceptin injections 1 every three weeks so finish them next March. Waiting for appointment to see when I have radium treatment. Numbness still in my left hand it comes and goes. I do get bone pain from the herceptin injections. 

My my cancer has been 90% removed so I glad about that, there was 3 in my lynth nodes so they took them all away.  Had my op 2 weeks ago. 

Love

sue x X X 

[Shelly212]

I'm  relative new comer and it will be 6 weeks tomorrow since my last chemo! My nails look hideous, so wearing nail varnish to cover them which I don't normaly do, not lost any and keeping them realy short to reduce the risk of catching them. My hair os starting to come back but is grey and white so fingers crossed the pigment comes back. The worst thing for me is post chemo loosing my eyebrows and lashes - a friend says they come back quite quickly bit no sign of that yet. At least the numbness in my feet is wearing off! 

[Daisy63]

Well ladies where is everyone? It seems to me that this forum is not going anywhere. The whole point of updating is to show how we are getting on. I know sometimes it's a pain but at the beging you where all adding your inputs no matter how trivial it may seem. Some of us like to know how you are. If I have given you the hump then that's ok with me. But please don't forget to let us know how you are doing and at what stage your at. 

suport and report girls. 

We need need this forum.

X X X X 

[Cag61]

Hi Sue, 

i started radiotherapy on Wednesday, it's a pain going every day but I was told if you've had chemo this is easy !!!!!!! I feel tired tonight but I am always out and about making up for lost time. How are you feeling ? This year has just been taken up with treatments and I can't believe it's August. I intend to enjoy the rest of the year. Sending love to you. Xx

[Daisy63]

Hello ladies thought you would like to know I had to go back to the hospital today for the results of the crap they took away. The doctor said that they took away 90% of the tumor plus my lynth nodes there was only 3 of them with cancer in them she is well pleased. I heard her tell Jo that she mostly tells the ladies that she gets only 50% away. Next step radiam treatment as a precorstion. The tabs for 5 years to make sure it don't come back.. X X X X

love to you all

susan 

[Sewing K]

I have had 3 Hercertin injections and I get swollen ankles.

They told be to contact them if they got too bad, but not sure how swollen is too bad!

My taste buds have not returned to normal after my last T, so not sure if that is another Herceptin side effect or my taste buds just being slow to return to normal.

I also tire easily.

K

x

[Lellie]

Hi Sue,

I am having Herceptin every three weeks but I haven't had any problems. I was worried that I might have as the nurse warned me but it has been fine.

Just getting over wide local excision, breast reconstruction and axillary clearance. Swelling, soreness and nerve pain but at least I don't feel ill as I did during chemo.

hope you aren't suffering too much with the Herceptin?

xxx Helen 

[Daisy63]

Evening ladies just a quick one, is anyone getting any side effects from the herceptin? 

X X X 

sue

[Cag61]

Hi Sue, 

i am so sorry to hear of the death of your dear friend...life can be very cruel and difficult to get your head round. There are no words I can say that will make you feel any better.....so tragic to lose a good friend especially with what you are going through. I am sending you a big hug and lots of love. Please try and stay strong and keep going which I am am sure is what your friend would have wanted. 

Carol Xxx

[Shelly212]

Sue, There are no words to make you feel your loss any less. She will live on forever in your heart and the best tribute to her is to be like her - thinking of you xxx

[Lellie]

Dear Sue,

What a dreadful, shocking thing to happen. I feel so sorry for you. You must all feel devastated. Life is so unfair, as you said, but at least you have good memories and were very lucky to have such a wonderful friend. Pleased to hear your surgery went well. Take care of yourself. Sending many hugs. Helen xx

[Happyboobs2]

Hi Sue, I have missed your posts and wondered how you were.I am sorry you are so sad and understand as I lost my best friend suddenly.xx

[Tulily]

Oh Sue, I am so sorry to hear your sad news. You must keep strong, your friend would have wanted you to. Hopefully your family are helping you through this. Wishing u a speedy recovery from the op. Take care.

[Warcol]

So sorry to hear of your friends passing. We are all here on borrowed time and no one knows when there time is up so it's even more so important to live each day as its your last. As it was so quick at least she hadn't suffered and she seems like she was a fabulous friend to you so she would want you to keep fighting the way you have and do everything u want to achieve. 

Glad you've had your op, mine is 17th Aug xx

if u need to cry then do it, let it all out, rant, scream, shout and get angry but rest assured we are still here for you if if we are virtual xxx

sending u speedy recovery hugs and condolence hugs xx Colista xxx

[Daisy63]

Good evening ladies, I have not been posting much on the forum as it seems to have come to a stand still. I am just letting you know that I had my operation on Thursday I am sore but nothing to painful. The worst thing of all is my lovely friend who helped me through chemo with little gifts and helping me in the garden died suddenly in the early hours of Saturday night. She didn't have cancer she was a very active women and she meant so much to me. She was only 51. I had been talking to her the day before. I am absolutely heart broken, what with feeling down any way I now can't stop crying life is so unfair. She always brought me small gifts to cheer me up, she brought me my hats when my hair fell out. And only last week she brought me a necklace of a french bulldog as we both have one of them.  I just can't understand it. 😢😢😢😢😢😢😢😢😢

[Emmajane]

Jan you're so right about choosing a journey... I too have put on weight... 🙈I always thought chemo would make you lose it! Just my rads to go now when the surgery has healed xxx

[Emmajane]

Thanks Sal 💗

[Emmajane]

Thanks K! That's great to hear. Xxxxxx op all went to plan 💗

[Emmajane]

Hello all! I had my mx and node clearance last weds, had LD flap recon at same time. Just rads to go now... Hope all ok? 💗

[Shelly212]

Thanks everyone! I've only just 're-found' this group again as I'm not great with technology! 🙂