I’ve just joined this site, and am amazed at the support and knowledge already. I was diagnosed with secondaries in feb this year after 15 years clear ( or so i thought) have several tumours on both lungs, have had EC chemo again and am now on Arimidex which suits me better than the tamoxifen did! Heh ho here we go again, no signs of anything else in bones but a bit of paranoia setting in whenever I have an off day. I am determined to keep positive, I’m early retired and should be enjoying life, and I do mostly. just a bit worried about the watching brief I seem to have now, every 3 months with consultant and chest xray. Is this typical.
Hi Liz, welcome to the forums, you may find it useful to know about some of the other support services from Breast Cancer Care for secondary breast cancer along with the support you will receive here:
There is a secondary live chat on Tuesday evenings, this is Breast Cancer Care’s online chat facility where you can talk to others in real time, it’s from 8.30 pm - 9.30 pm on Tuesdays. It is facilitated by an expert moderator and a nurse who are on hand to point you to sources of help and information, for most people, the chance to talk to others in a similar situation is what counts, again, for more information follow the link below:
breastcancercare.org.uk/content.php?page_id=6218
The following link will take you to Breast Cancer Care’s publications about secondary breast cancer which you may find useful to read, there is also a DVD called ‘Living with secondary breast cancer’ which has been recently introduced, you can order these via this link or by contacting our helpline on 0808 800 6000:
breastcancercare.org.uk/content.php?page_id=5258
I hope this information is helpful to you, please don’t hesitate to contact us either via the website or the helpline for more support and information.
Best wishes Liz
Lucy
Hi Liz
I was diagnosed with secondaries in both lungs in April 2008, after 41/2 years clear. Have had FEC chemo and ovarian ablation by radiotherapy. I am now on arimidex and last scan showed no change since end of FEC so having a break from chemo with next scan mid Jan. I have a CT chest scan every 12 weeks so looks like we are on a similar regime.
I’m sure the good days will stay well ahead of the off days. I am finding the need to pace myself difficult to adjust to, but I spread the things I want to do through the week, instead of all in one day then a week to get over it.
Sounds like you are coping well with arimidex, I have a bit of an achy joints issue first thing in the morning but am fine by the time the kettle is on and the cats are fed!
Best wishes
Jayelle
So sorry that you have had to join this club - I’m a boney mets being nosey!!!
But I cant help having a little snigger at the Arimidex comment - ‘am fine by the time the kettle is on and the cats are fed!’ - very much the same in this household!!!
My little tip for any hot flushes - Magicool spray!!!
Best wishes
Anne xx
Thankyou so much for your replies, and I’m strugglin with the site here so… be gentle with me. not quite sure how I respond to replies. just thankyou, don’t feel quite so isolated now… and I am having far less problems with arimidex than tamoxifen, but that was 15 years ago; actually my consultant warned me about joint problems and is keeping an eye on my hands as I am a handspinner, wool, spinning wheels etc, just for fun. Thought it was just age and suppose could be, ribs hurt now and then when I’ve been on my feet for 2 hours or more. Apart from all that my life is good, hair growing back ( unfortunately not auburn) and can’t wait for the spring when I have lambs due. I do think secondaries after such a long time are difficult, I was so much stronger before and thought I’d escaped… but looking through all the comments here , my god there are some brave people. I t certainly has helped me. re feeding the cats and coming round in the morning… we sadly are a cat free zone for the first time in 20 years BUT I cat sit for neighbours and they come back and visit!!! And kip on the bed but seem to know I just do respite care !! Also have to ageing dogs a lab and Border collie,we all stagger out together around the field!
Hi Liz
Just thinking about you and hoping your weekend is going well. I do a lot of cross stitch and knitting , even more since dx with secondaries and finishing work. Your spinning conjures up great images and I bet you find it very relaxing, I find all my crafting very theraputic.
Re hair growing back, I seem to have got used to my “pixie” style and will probably keep it like this for a while unless my ears get too cold! My friends have come up with the Pixie description, I didn’t realise Pixies could be my age or size??
Cats! Well we seem to be acquiring a third, a very hesitant but hopeful black and white tom who we have nicknamed Thug due to his thickset appearance and bolshiness. Of course the food and constant checking on him will be doing nothing to encourage him!!!
Keep in touch and let us know how you are getting on
Jayelle
For Sixpen -
Hi Anne
Meant to add to that I don’t think you are being nosey, the forums are for us all.
Thanks for the tip about Magicool spray I will try to track some down next time I’m shopping.
Also, cats have a great way of keeping your feet on the ground don’t they, my OH always refers to the saying about us just being the staff in the cats house!
Best wishes, Jayelle
LOL at your OH - its very true. And if you want the best seat in the house, then move the cat!!!
Love Anne xx
Hi Jayelle,
thanks for your reply again, I have a tutor at present steering me through this scary website!!! Had greatw/e so far with viesitors, first time for a while, and it’s been good. Had two respite care cats visiting today, both called Millie. One is black and white and a bit bolshie too, likes pate and ham but not prawns??? It is still a bit draughty round the ears ( I live in the Pennines!) but a great sunny day today to lift the spirits. Went to a spinning guild meeting yesterday, so good chat and laugh as well as creative!
Cheers from
Liz