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Welcome to everyone starting chemo in January.. we are now the "" January Jems""

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Welcome to everyone starting chemo in January.. we are now the "" January Jems""

Didnt think I would be posting in this section of the site.... had good news though... no spread to the lymph nodes :-)) ...it seems due to it being a high Grade 3 Im to start on chemo first... then Rads.. then Herceptin....dont think I took it all in to be honest... this part has always scared me as i associate it with Ca.. daft I know.. but loosing all family members to Ca.. it just scares me....so I think I will be dealing with it one day at a time... i should hear next week from my onc... get the ball rolling... any advice, tips, wigs etc would be grateful... thanks ladies xxx
1,243 REPLIES 1,243
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Hi Ladies,

 

I haven't been on here for a long time either, have been reading posts to keep up but I'm not sure about this Forum either at the moment, so hope this will end up in the right place.

Sandra so sorry to hear you've been having a tough time. 

Rhonda re cording I had really  bad cording too and after making progress went back to square 1 againg after my planning appt for rads. However I saw a specialist physio who's trained specifically in cording and I now have full use of my arm and it's fantastic.  Obviously it's always going to be sth I have to be careful of and I have mild lymphoedema too but it has made such a huge difference to llife especially with young children.

I'm done with chemo & rads now, just follow on check ups, no drugs thankfully as I'm TN too.  My onc told me to tick off and celebrate each month as it passes and the further I go down the road the less likely any recurrence is.  So I plan to celebrate each month.

Is anyone on any other forums at all?? I'm really curious to know what people's reactions to you have been after finishing treatment?? My MIL hasn't spoken to me since last Christmas!!

Big big hugs to you all and wishing you well.....

Janxxx

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Sorry Jenny, my ribs are fine, in fact I haven't had any problems with rads at all. Have you asked the rads team at your hospital what they think? They should be able to give you a telephone consultation. Have you had your post rads check up yet? 

Hope you feel better soon

X Yvonne

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Hi

How is everyone ? Ive a question to ask has anyone got problems with sore ribs after rads i have read this but my ribs on the bc side are tender in spots and if i prod them also makes bras uncomfortable to wear for long i also still have numb areas and arm pain. feel a bit low at the moment.

 

jenny xx

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Hello everybody!

 

Well I'm back from my trip, and up early due to jet lag 🙂 

 

I'm trying to decide whether to be bothered with the new forum, as I also subscribe to the US/Canada version, and I think it is probably healthy to try to move on from all this anyway now........ 

 

Then I find you all and feel like a heel for thinking I should just walk away!

 

I had a pleasant stay with my folks and seeing some old friends (one of whom was diagnosed with Parkinsons Disease while I'm was there! She's 53, same as me, and has always been extremely fit and healthy.  We were at school together. Parkinsons! .... I wonder if I wouldn't rather have breast cancer!! We both agreed Life's a **bleep**! Smiley Frustrated  )

 

My parents were in good form compared to last year when I visited, so I left them a little more easily, although its hard to say Goodbye to two 90-yr-olds ... 3 if you count M.I.L.....And not know if you'll meet again!

 

Anyway, I had great weather, and walked the South Downs a bit. Picked blackberries and made a crumble. Visited Chichester Cathedral, and enjoyed pub lunches. It was a great visit, but I'm pleased to be home in Canada!!

 

I did go to Nicola Jane's Mastectomy wear shop in Chichester. They have one in London as well, and you can shop online, but I wanted to visit first to be properly measured and fitted. They did a great job, and I bought a weighted foam prosthetic, which is so comfy compared to my Silicone beast (I mean breast ... No actually I did mean beast!), and also a swim form and two bras. I think the total was about £75, which I think was money well spent. I was very pleased.

 

My skin did get very raw and itchy, blistered a bit, but is now settling down nicely, so I'm happy about that, but haven't yet tried wearing my proper bras, just the Genie Bras that I bought which have been a life-saver.

 

So Sandra! I'm so sorry to read about your secondary diagnosis. It does sound like your onc is a bit crass though. My doctor is similarly blabber-mouthed. When I told him I was hoping/planning for a prophylactic mastectomy, he said "I think that's wise. Another patient of mine did the same thing and her "good breast" turned out to be riddled with cancer!" Thanks Doc!

 

I went to a drumming circle yesterday. I know, I was raving about them before, and I still am. It's indescribable, but maybe not so available  in the UK?? Anyway there was a guy there who said he was told at the beginning of the year that he only had a couple of months to live, so he decided to opt out of "treatment", and he has been "managing it" himself with a combination of diet/lifestyle/complementary stuff ... I must say, he looked very well for somebody who is well past his predicted sell-by date! 🙂 

 

Anyway, that's enough from me. I gather the jury's still out on the new forum???? 

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Dear Sandra, Your name was the first one I saw when I came on this site . You started this thead and you link us all together. I can only echo what everyone else says and I'm sure the chemo will kick it's butt. Stay strong and positive. Gentle hugs Ireneexx
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Dearest Sandra, I am so sorry to hear you have to go through this again, I can only imagine how you & your family are feeling right now, I also found a lump in my breast last month after treatment, & had a biopsy which proved to be fat Necrosis scar tissue, but I was worried sick until the results came back. I was lucky. I also have liver lesions, don't worry about them, most prob all the wine over the years 🙂 Don't listen to Drs when they same time frames as they have no idea really, & shouldn't even say such things.. There are so many positive stories out there, & hear is another, a friend of mine was given 3 months to live & told to get things in order, he is going strong 8 years since this diagnosis. Miracles happen every day! We are all here for you , praying & hoping that this new lot of Chemo will knock the crap out of this terrible disease & you will be cancer free, like forever...... Please keep us updated so we can support you as you fight this. You definitely can do & beat this. We are all strong positive women & survivors, and here for you. Hugs & prayers to you and your family . Rhonda xoxo
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Dear Sandra,

They just do not know, and that is what they should be saying to you.  My dearest friend who also has breast cancer (we are going on holiday with her and her husband this week) was told she had got between 9 months and a year.  That year was up in April and she is going so strong that her cancer marker has gone down by one and although she has  been having  3 monthy scans she has been told that she is doing so well that she does not need the next one normally  due to take place in October. She has secondaries in the liver and bones (both hips and spine)

 

Then there is my daughter-in-laws father who was told  following surgery for lung cancer where they could not remove all the cancer becuase it was stuck to the cardiac sac, AND he could not have chemo or radiotherapy 'because it would kill him'.  that he had a 4% chance of surviving a year.  He, is not only going strong, but the last scans show no signs of the cancer, FOUR years later!.

 

I was told that my poor diagnosis meant that my chemo treatment 'was a big ask and has a much less than 50% of success'.  I believe my Breast Care Nurse who said to me 'they just don;t know', and I believe her. 

 

Please  know that they have been proved wrong so often that I  just  don't understand why they throw out these statistics. 

 

I know we are all right there walking beside you and fighting with and for you.

Love, Chrissie xx

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Dear January Jems

 

It seems so long ago that I started this thread..as I didnt start treatment till February....lots has happed since then so I felt an update was needed as you lovely Jems supported me through the dark times...unfortunately I have secondary breast cancer which appeared halfway through my last chemo session... my onc has never known anything like it to happen....my surgeon said the lump was scar tissue from sugery.. then the new lump which appeared my onc said it was a blood blister..unfortunately after a CT biopsy it showed up an abnormality which turned out to be secondary...my appt with my onc last week didnt go well...she gave me a few months..wouldnt talk to me..told me I will talk to your son and daughter... she also told me I had lesions on my liver... which came back clear!!...so I am now starting on a new chemo on the 25th Sept which will hopefully "control" this dammed disease........This news has floored the family cos Im not ready to go anywhere yet so now knowing my liver is good I intend to fight tooth and nail... my macmillian nurse is angry that I was given a timescale when results hadnt even come through......so I feel in limbo at the moment..numb...I just want someone to actually tell me whats happening etc...then I know what Ive got to work with....Im sorry that Ive had to say all this...but Im a fighter  and knowing all you lovely, wonderful supportive people are behind me I know I can do this

 

Angel hugs and blessings to each and every one of you xxxxxx

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Sandra and I both belong to the February thread.

She was told recently that she has secondaries and now has to have more chemo.

I'll ask her  to pop by and update you properly.

Glad to hear your hair is now growing Jenny

X Yvonne

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Hi
my eyebrows are not thinning any more not growing either but my hair is growing all of a sudden.
Nice to hear from rhonda and yvonne and i agree i dont like new site.
I think were all worried about it coming back and the side effects of tablets are not good.

Does anyone have an update on Sandra she started this thread and is not good but thats all i know at the moment

Love to all
Jenny xx
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Hi ladies,

I don't come on here very offer anymore as I really don't like the new forum.

Like Rhoda I can't believe it's almost a year since DX . I looked back in last year's diary and it was end of September that I first found the lump and then when the dog started sitting on my knee and nudging it at the. beginning of October that's when I decided to get it looked at and we started travelling back to see the gp. 

Yesterday we booked a holiday, we're going to the canaries for a week in October, can't wait 🙂 were also going to Iceland in January to see the northern lights. Both of these holidays are unusual  for me as I don't like flying but if I can  cope with BC I can surely cope with flying. That's going to be my new attitude to life. Next year I'm also going to face my fear of crowds and go to a music festival. I've got an unofficial bucket list and am working my way down it.  I was once told to make sure I don't die with any fun left in the bank  and that's what I I intend to do.

We FINALLY sold our house after it being on the market for over 3 years completion is on Friday 13th and we're giving the car to our daughter so we won't have any material ties and can just go off cruising properly.

I still worry the BC will come back, especially as it was TN but I have surgical and onc checkups in a couple of weeks so providing they are OK I'm going to try and put it to the back of my mind and get on with life. One good thing about TN is I don't have to take the daily tablets for the next x number of years with their associated SE's.

 

Good luck ladies, enjoy your lives

X Yvonne

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Hi all you precious Jems, just checking in, how's everyone doing? Congrats Irenee on your fundraising. Hope your cording get sorted out Chrissie, I've had this for 6 months now, 2 diff phsio's & it's still no better, just trying to deal with it. Caroline hope your implant surgery goes well. Jenny have you got any eye brows left? Hope they are hanging in there. Sarah hope you enjoy your new Job & Lee it's great that your back at work too, we are all getting on with life. I was first diagnosed last Nov. can't believe that it's coming up soon to 1 yr since this nightmare journey began for all of us, we have SURVIVED CHEMO and all the surgery & pain.. YAY. My hair is short & very very curly & back blonde again not grey , i'm also using natural dye. Managing OK on the 5 yr Femara drug, just a little bit of joint pain but tolerable, axillary cording is my only thing crapping me off. Please girls check in now & then keep us updated on your progress. Love & hugs to you all. Keep smiling Rhonda xoxo
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Goodluck with the appointments Chrissie and hope all goes wellCaroline for the implant..I hope to have reconstruction soon. xx
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Will let you know when I am back, Irenee!

 

Caroline - I will certainly give your love to Ireland we are just looking forward to having a complete change from all of this!  Am off to see the Onc today, and apart from 2 appointments with Lymphedema Nurse that will be it until our return.  Also wanted to wish you the very best with your next Mx - I was not brave enough to consider reconstruction, but I was also double G before!  Let us know how you get on.

 

Kind regards all round, Chrissie x

 

 

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Hope to go to Wellingborough Crazy Hats...I've heard it is very good.  See you there Chrissie  after your hols. xxx

 

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Hi Irenee,

There isn't a Crazy Hats in Northampton apart from the fact that the refreshments area in Northampton General is funded by Crazy Hats.  When I get back from Ireland I will be going to the Wellingborough Crazy Hats!

Chrissie xx

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Hi Chrissie, well done for making the right choice about your other breast...this has really has got me thinking!  Sorry about the cording issue and hope the physio helps.  I do have a  feeling of pulling under my arm sometimes.

 

The grand total of the fundraising event is £1055...all thanks to my friend Sam who is about to start chemo.  I haven't  been to crazy hats yet but I do intend to do so.....hope to go to the one in Wellingborough.. Is there one in Northampton?   Hope you have a great holiday.

 

hugs to all. Irenee

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Hi Chrissie, I will be joining you but not breast free. Im having a implant in my left breast - I had a right breast mastectomy last Oct. 

 

Im back from Ireland 3 weeks ago. Had a fab time. So enjoy Ireland and kiss my home ground for me. 

 

Regards

 

Caroline

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Hello Ladies,

I am not getting on very well with this new web site as I lost you all, having only just recently got back into the swing of it.  Just want to say to Irenee, well done re the fund raising at Wellingborough.  It was an event I would have loved to attended but couldn't because of being in recovery mode/treatment.  Do you attend 'Crazy Hat's' Thursday gatherings?

 

For the record, I was so glad to have made the decision to have the prophylactic mastectomy for my remaining breast (left side) and am now a member of the 'Breast Free Club'.  When I went for my results for the op I was told that they had found 2 areas of DCIS.  The Onc started with the words 'you made the right decision'!!

 

I am being treated for lymphedema to my right arm, and had developed painful cording in that arm so the Lymphedema Nurse has referred me for physio.  Apparently cording can develop months after surgery (9 months in my case)!  And next week we are 'running away' to Ireland for a month for a complete break from all of this, so in the meantime I wish you all well and will look in when I get back. 

 

Kind regards all round, Chrissie x

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well they are thinning again wah wah x
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£868. was raised for Breast Cancer Care and £72. for Crazy Hats. Well done Samjs! It was a lovely afternoon in lovely surroundings.
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Sorry Jenny your eyebrows are thinning, when they should be getting thicker, I had mine tattooed on 3 weeks ago & love them, still tint the ones that have come through & pluck the odd stray one, also had my eyeliner re-done since it had faded a bit! Highly recommend eye tattoos. Hugs all xoxo
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Why would they be thinning again Jenny? Big hugs.
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hi ladies
yuck yuck yuck my eyebrows are thinning again i cant beleive it so gutted

jenny x
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Just to put it right Strawberry Tea Party is in aid of Breast Cancer Care and is held by Samjs. Cricket Ground, Wellingborough.
Northants.
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Hi ladies, My hair has come back dark grey, It was a reddish brown before. Also I have lost two toenails. Some days the underarm cording bothers me ...but in the main I am doing ok. Today I am off to a Macmillan Strawberry Tea Party run by Sam who is a member of this site. It is held in Wellingborough Northants. I have been baking like mad and I am looking fwd to it. Hugs to all. Irenee xxx
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Hi everyone. I have been using Naturatint hair dye from Holland and Barrett. It has covered greys and seems to last a fair while. It has no ammonia.
Re work, I am ready to get back to it so am starting a new job on 9 Sept.
And I can't lose weight either! Am on Tamoxifen.
Love to all, Sarah
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Hi Ladies, what hair dye company is recommended to colour your hair. I am undecided as was told it can only be vegtable dye based. Any hints or advice would be great. 

 

Caroline

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Hi Lee, thanks, mine Los grew back. Yucky colour not the nice blonde like before LOL can't believe I've coloured it & it is so haha like nearly bald!!!! Great to hear your going back to work, but that is really crap that your toenails are falling off. You asked how we are feeling so here for me, my toes are a little numb, but my main problem is still me underarm cording , it is still very uncomfortable & pulls into my chest on re-construction side, one phsio said stretch it, this didn't work after months so another said rest it, I don't know what to do with it but it still gives me the s.......s big time! But hey life is good after chemo. Working full time & loving life .. Hugs to all my Jem friends you will always be in my heart xoxoxo Rhonda
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Hi jems,

Am so glad for your Rhonda.  I dont like this new website I couldnt find anything on it.  Oh well, have to get used to it I suppose.  I dont like my hair so short but at least it is growing.  It grew back black and silver, used to have long blondish colour hair so big difference.  My niece coloured it for my yesterday so at least no grey now.  Am going back to work on 2 September so things will start to get back to normal.  My toenails have starting falling off now.  I also cannot seem to lose any weight am on Tamoxifen so dont know if its that.  How is everyone else doing.  Dont come on here so much anymore. 

Love Lee X

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Irenee , I'm actually nearly liking my cropped extremely short hair, & everyone is saying how much it suits me this short, maybe they are just being nice LOL give it another month & I will like it a lot better!
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Just when I am thinking of chucking the wig for good I am getting such nice compliments....life is strange..
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hi
Rhonda so pleased for you xxxxx
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Hi girls....Great news Rhonda...hope all goes well Gay...goodluck with your operations Caroline and such good advice for us all be positive and keep a sense of humour. best wishes all.xxx
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Took ages to find you all on here. I got my results back and they are all clear, it was just Fat Necrosis, not sure of this new site yet.Hope you are all doing OK. Gay I hope you have good news too. Hugs Rhonda xx
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Hi

like Jenny just testing...not keen on it yet xx
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hi

 

just testing to see if it posts i dont like it yet xx

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Hi Ladies, I have been home to Ireland for a holiday. It was great.

 

Im now back and ready for my next surgery. Left breast mastectomy then hysterectomy. I have elected to do this as a result of cancer in family and family history. 

 

I am still having herceptin until next Feb. 

 

I am still positive and have maintained my sense of humour. 

 

Caroline xxx to all you lovely ladies. 

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Hello everyone, it's nice to read everyone's updates.
I'm doing very well, still doing Herceptin obviously but feel fine from it. I am going through gene tests at the moment as its emerged my paternal grandmother died of ovarian cancer. These tests take a good 8 weeks tho.
Wishing all the best to Rhonda and Gay for your results this week and keep the posts coming everyone.
sarah x
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Hi Irenee, Yvonne, Gay, Rhonda, Jenny, Sarah, Caroline, Lee, Chrissie, and anyone else whose name escapes me just now, and for which I apologize!

Thanks, I am going to my parents in Sussex (nr Worthing). Staying for 2 1/2 weeks, so if anyone is down that way let me know! Actually thinking about spending that long with my parents is a bit scary, so maybe planning to get away for a couple during that time might be a good idea! Floating away on a canal boat sounds like a plan!! 😄

I hope to do lots of walking. Maybe swim a bit even? And generally relax and look after myself, then when I get back I'm going to start a serious plan of rehab, and book myself into a structured program of exercise and return to work strategies.

I'm actually quite looking forward to the challenge. I've finished with the passive bit, now it is my turn to take control of my life and my recovery!

Good luck to all of us! xxx
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Hi girls
Sorry I haven't posted much but I have been keeping an eye on everyone - as usual thought I hadn't got anything very helpful to add!
Thinking of you all now treatment is "sort of" over. I am feeling really good, fit and healthy and have started training for my Women V Cancer 400kms bike ride in Cuba on 21st October. Help, not fit enough yet!!! Hair is growing back nicely and I'm rather enjoying it very short and looking forward to spending a month at our house in Spain starting on 1st September. Only small blot on the landscape is an ultrasound scan on Tuesday to check out some small lumpy bits under my arm and on my chest wall. Onc is lovely and she doesn't think it's anything sinister but wants to be on the safe side so, as you all know, it is a bit nerve-wracking just waiting. Fingers crossed I'm raising a glass or two on Tuesday evening after a negative viewing! I've read so much on this forum about recurrence and spread that I am not sure what I think any more. Just got to try and be relaxed about it otherwise we will spoil the rest of our lives with worrying about every little niggle.
Rhonda let me know how your little lump check goes. Fatty bits diagnosis would sound good to me, fingers crossed. Love the name of wig - dead racoon. My sisters were a bit Python-esque and named mine my "murkin" (pubic wig!!) and I can see where they are coming from.
Morwenna - safe journey back to blighty and have a lovely time with your family. Yvonne - Tuscany would be fab. I went there for my honeymoon and love it.
Love and the very warmest of good wishes for health and happiness to everyone. You are all very special. I'll drop a line to tell you about my extra bodily fat bits after scan on Tuesday!
Gay x
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Congratulations Morwenna, have a good time in Wales. I hope the weather improves for you, it's awful here today, very strong winds and heavy rain 😞
I'm starting to feel more normal. Finished rads on Tuesday and started cruising again on Wednesday. We can't go too far yet until I get signed off by the surgeon and onc in 6 weeks but at least we don't have to go to the hospital every day. I got SO depressed being stuck in one place, am just a water gypsy at heart. I could feel my spirits lifting the minute we cast off on Wednesday.
Anyway, it's time to get my life back on track. We're trying to book a couple of holidays abroad. I want to go to Iceland to see the northern lights but first I want a week being pampered in Tuscany. Sun, food and wine in a small hotel where I can just lie back and be waited on......can't wait 🙂
X Yvonne
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Hi girls....Well done Morwenna on completing your treatment...I was wondering which part of the UK you will be staying in? Hope you have a good time over here. Hope your eczema gets better soon Yvonne. I do go without the wig sometimes but not when I go dancing...I am looking fwd to the wig burning party tho'. lol. Hope all goes well on Monday Rhonda ..will be thinking about you. I have a busy weekend as my grand daughter is staying with us.
Take care girls sending hugs Irenee xxx
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Congratulations Morwenna on finishing treatment, I know you will enjoy & have a great holiday & visit with your parents & family, you have been waiting a long time to go home. Let them spoil you xoxo
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Hey girls! I'm still here too!

Just finished 16 rads on Weds, and I'm quite red and a bit itchy/slightly sore, but I've been told that my skin is in really good condition considering I just finished treatment, so I really hope it doesn't flare up too much now I have finished.

I am also going for a prophylactic mastectomy, again partly as risk reducing, and partly as I want DIEP reconstruction, and aim to have both done at once, as you only get one bite of that particular cherry!

I also really feel that I have little confidence in imaging as the vast majority of my left breast carcinoma was invisible to mammogram/ultrasound imaging!

However, for now I'm glad to be done treatment, and don't currently feel too anxious about the future, which is good! I'm coming to the UK next Weds, and visiting my parents and other family and friends until Sept 8!

I've discontinued my heparin injections, and am now on oral warfarin for my blood-thinning. Yey! Last weekend I was camping and hiking in the Rockies, but this week I am definitely more tired!

Nice to catch up with you all again! 🙂
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Yay Yvonne way to go, I haven't worn my wig for 3 weeks now and feel a sense of freedom, 8 months of wearing it, & I was just hating it so much, I used to call mine a dead raccoon. Hahaha Hopefully I will get my biopsy results on Monday, instead of my recon implant feeling nice and smooth it is all lumpy which the surgeon thinks is fat necrosis, but not 100% it is when skin cells are damaged & die they form hard lumps, but I had to have them checked, as they said a very small chance of them having cancer cells, I can't let myself think of this as it would mean starting all over again, so it has to be just plain old fat necrosis, where there is nothing I can do about, it may dissolve in time, with massage. You are all still in my daily thoughts. love Rhonda xxxx
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Good luck Rhonda. I hope you get your results quickly and all is well. Fat necrosis sounds horrible, I've never heard of that before.
I've had a big eczema flare up on my face which I'm very selfconcious of, so when we went out yesterday I wore my wig for the first time for a month, plus big sunglasses. I noticed lots of people giving me second looks and husband said it's because I looked like a celebrity in disguise 🙂 Today I didn't bother with the wig but still wore the sunnies and didn't get a second glance off anyone. That's it! Wig can stay in it's box never to be worn again.
Have a good weekend girls
X Yvonne
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Hi Irenee & Jenny, thanks Jenny, this is when I was so happy I had a re construction to be able to wear normal swimwear, as i sell swimwear all year round so this was important to me, and as you say Irenee show off our boobies in low cut tops LOL I had the Biopsy!s done on Tues, poor fake booby is sore, but thank goodness they didnt puncture the implant, won't get the results back until next week, God I am over waiting for test results. Take care HUGS Rhonda xxx
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hi
Rhonda you look great
jenny xx
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Hi Ladies. Glad you are still here Chrissie, Rhonda and Jenny. I did send you a PM Rhonda wishing you all the best for your scan....don't know what happened to it. My hair and eyelashes are coming back but I haven't got the courage to go out yet without the wig. My granddaughters in their teens also fell about laughing when I said I was having reconstruction surgery and would be wearing low tops, Wishing you all the best ladies and keep posting xxx