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