Breast Cancer Care Forum

Hi Everyone, I haven't been here for ages as I really don't like the new site but as I keep getting copies of your posts I thought I'd better reply. I'm doing REALLY well, got totally discharged by the oncologist yesterday so I don't have any more check-ups apart from the annual mammo    I've suffered a lot with periferal neoropathy in my hands and feet, to the extent that I couldn't hold a cup or a knife and fork or walk very far. My lovely BCN referred me for a course of acupuncture which has had amazing results. I'd always thought of acupuncture as "mumbo jumbo" but have definitely changed my opinion.  While I'll probably have PN to a certain degree for a few more years I can now use my hands again, in fact I'm crocheting like mad again, and my feet are tolerable.   Take care & stay well, X Yvonne ... View more

Hi Joyce, It's hard when you feel isolated during treatment. Living on the boat meant I couldn't go to any of the support groups etc at the hospital, so I was really thankful to find this forum. I transferred to the February group though when my treatment kept being delayed. The February Valentines saved my life - literally. We now have a private FB group where we can post non BC stuff and some of us are meeting in London on Monday. Could your BCN put you in touch with another lady with BC in your area, it's so common there must be someone who lives near you. best wishes Yvonne ... View more

Hi Sika, Have you considered taking anything to boost your immune system?  Boots sell all kinds of different immunity boosters.  I've been taking Immutone which is shark liver oil for the past month and am starting to feel much better/stronger. It's also supposed to be good for arthritis and eczema which I also have and the eczema is a bit better but the arthritis is just the same. X Yvonne ... View more

Hi Joyce, nice to hear from you again. Have you tried claiming Employment Support Allowance?  Cancer patients can claim it for 12 months providing you have paid enough NI contributions. It's about £75 for the first 12 weeks and then £106 a week until 12 months. It's not much I agree but better than nothing. X Yvonne ... View more

Have  you mentioned the rash and itching to your Onc Kath? I've just read the list of SE's and it says rash and itching are severe SE's. Might be worth a phone call x Yvonne ... View more

Hi Jan, I do lots of stretching and it does seem to help. My hands and feet are really bad, especially in the morning. I had a bit of arthritis before chemo but it's much worse now. I've got an appointment with the onc on Thursday so I'm going to mention it to him. I'm hoping he'll sign me off for 6 months, it'll be so nice not to have to think about going back to the hospital till next year. X Yvonne ... View more

Hi Jan nice to hear from you again, glad you got your arm sorted. My mother hasn't bothered with me since I was DX, I found people who I'd thought good friends just sank into the background but more casual acquaintances and even total strangers proved to be the biggest help and the kindest. Before they changed the forum I used to come on regularly and try to help the newbies but I really don't like this new layout as I c ant find anything anymore so I don't bother. I think that a real shame as when I was first dx and all through chemo I had lots of advice and support from women who had come t hrough it themselves. I hope the moderators read these posts and realise what a big mistake they have made. The forum might now be much more modern but they should realise that the women who need to use it are usually a bit less techie and also coping with chemo brain. Hope you continue to improve. I'm also TN and have just been put on 6 month review. I'm also really glad I don't have to take tablets for the next 5 of 10 years. X Yvonne ... View more

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 ... View more

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 ... View more

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 ... View more

I don't like the new forum either. It's nowhere near as user friendly as the old one, or others I subscribe to either.   I had my hair trimmed for the first time yesterday. I popped into the local barber's shop and a girl with bright pink hair and covered in tattoos tidied up round my ears and neck but didn't actually touch the hair on my head, well it's not long enough to cut yet anyway. To be honest I found it pretty traumatic ,especially when she started asking questions about my cancer. When she'd finished I asked how much I owed her but she wouldn't take any payment.  I just burst into tears. It still amazes me how total strangers can be so nice, yet the people I thought were friends just can't cope and don't want to know. Have a good weekend X Yvonne ... View more

Yay! I finally made it in..... had to get the moderator to reset my password and now I can't change it. I suppose it's just teething troubles but I don't like the new format much. If I can't get it sorted I'll just stick to FB but that would mean I'll loose my January Jems friends :-( I'm not very techno savvy unfortunately xxx ... View more

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 ... View more

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 ... View more

I LOVE the idea of meeting up. Birmingham is pretty central with good access by train, coach etc. Wherever we finally decide just count me in :-) ... View more

pammyx - I had chemo at christies and they were wonderful but I'm having rads at Salford Royal. I'm starting to get very tired and boob is swollen but skin is perfect. I hope I haven't spoken too soon and jinxed it ;-) I'm not using any cream as I've got a major eczema flare up at the moment and as my boob isn't showing any signs of redness etc I've decided not to use anything that may risk getting eczema there. I've got aloe Vera gel ready in the fridge just in case. If you're at christies you must be in Manchester area, maybe we can meet sometime along with Molly Molly and grannyP Pm me if you're interested X Yvonne ... View more

I went for rads no9 this morning and had a totally different team on a different machine. They were horrible! The junior radiologist burst into the changing room without knocking and when I couldn't get comfy on the bed as it wasn't set up the same as the other machine the radiologist got really stroppy. It only needed the footrest moving by an inch but his attitude stank. The other team have always been lovely and chatty and always take time checking measurements and my details but this lot seemed to be in such a rush. I hope I don't get them again tomorrow because if they're the same again I'll be saying something! X Yvonne ... View more

Oh Karen, so sorry to hear about your friend. Big hugs xxx x Yvonne ... View more

My onc told me that chemo plus rads put us TN ladies ladies who didn't have any infected nodes back on a level playing field as the hormone positive ladies with regards to prognosis. We may not have the benefit of 5-10 years of hormone tablets but neither do we have to put up with their side effects. Personally I'd much rather take my chances than suffer another load of side effects. He told me to finish rads and then go and get on with my life life and not to worry about recurrence as stress and worry are the worst things for your health X Yvonne ... View more

Hi Funki, Did it start before or after you finished chemo? X Yvonne ... View more