Breast Cancer Now Forum

Hi all, A great idea Denio about regional meets and maybe one in Wales. I'm just about to start weekly chemo and bi-weekly Avastin so I don't feel up to organising but would gladly be interested as I was worried I might not feel up to going to London there and back in one day with treatment and work in the same week! I'm pretty close to Newport or Cardiff or Monmouthshire. Haven't lived here too long to think of good places but will rack my brains and see also what others in Wales may think. It was a great idea by Angee and I do so wish you well Angee with the operation and do so hope you can enjoy your holiday before that. Take care all, Anne x ... View more

Hi all, I'm so sorry to hear you've got further problems with your back Angee. Please don't worry about all this Cinders Tea. It was so good of you to take it on in the first place. I used to live in London and played piano for a few years for Afternoon Tea at the gorgeous Landmark Hotel on Marylebone Road just next door to Marylebone station and a few hundred yards from Madame Tussauds. Just checked on their website and it's £30 for Afternoon tea there or £35 with champagne but it's a beautiful venue and the food always looked fantastic and was always very good in the staff canteen which was the closest I got to the real food there!! I have just emailed them to ask if they might be able to accommodate us and explained our dilemma so I will let you know. Also Fortnum and Mason's is very nice for Afternoon tea.My husband and I went there last June to celebrate 10 years together! Take care all ... View more

Have finally got my weekly chemo day sorted which will be Wednesdays so Tues 6th May should be good for me as I'm sure I should be able to have my bloods done on the Monday instead of the Tuesday. Don't mind changing the day but Tuesdays will be the best bet for me and mean I'm well recovered from my previous week's treatment. ... View more

Hi Poannie, Your moving post really spoke out to me and echoed some of my own fears and anxiety. It must be so hard to mourn the loss of a close friend while naturally anxious and unsure about your own mortality. I too realise that I'm never going to have children and I find at time that this is harder to cope with than the fact that my life may well be shortened. I remember thinking when I was first diagnosed with primary BC 5 years ago that if I was to die the next day the biggest regret I'd have in life was not to have become a mother. It's great that you have such a supportive partner and sound to be very close which reminds me of what I have with my husband. I also am more worried about him becoming a young widower than of my own mortality and it does at times feel totally overwhelming. It is great to have this forum to just be able to say whatever we feel and know that we're not alone. Thinking of you, Take care, AnneS xx ... View more

Hi Angee, I would love to go but I still don't know what days my chemo and bloods are going to be on. Should know any day and I can't say for definite as I don't know how I'll be yet but can I say a definite maybe! I will be due a PET scan in London around then so it may be possible to combine both. I'll have to see how it goes and decide for sure the week before if that's ok with you. Thanks so much for organising it. AnneS x ... View more

Good to hear from you Hemly31, It helps to hear from someone else in a similar stituation. So many of my friends have already got children and it's hard knowing that's just not going to happen for me now. I too like to read up about eating the right foods and the right lifestyle and alternative medicines but feel so cross that I am actually at my healthiest and fittest I think I've ever been and yet I've got secondaries so can't be! I'm still waiting for a start date for my chemo and Avastin which I'm going to be having from home which will be a big help but I feel in limbo at the moment until I get a date! It's supposed to be starting next week but nothing's happening yet! I'm hoping very much to be able to come to the Cinderella Day on 6th May at the Ritz - health and treatment allowing - I will be due for my next PET scan in London around then so I may be able to combine the two! I can fully understand your disappointment missing your holiday. It has been a long-term wish for me and my husband to go to Australia and New Zealand and I'd been saying before my most recent diagnosis we'd do it for my 40th in 2 years time. I'm still determined to get there but it may have to be sooner -health and finances allowing. I think it's important to have things to look forward to and for me to keep planning ahead however hard that seems right now. Anyway hope your treatment continues ok and the nausea doesn't get any worse. Take care and do keep in touch. Anne x ... View more

HI Denio and Alicer, If I'm able to come - treatment and side effects allowing(!) I'd be getting on at Newport so it would be good to travel together if we could. AnneS ... View more

Thanks for that Deirdre, It's so good to know I'm not alone even though I wish none of us had to go through this at all! It will be good to compare notes - my oncologist seemed to be playing down the side-effects last night so I'll wait and see. I'm intending to keep working ( I only do about 14 hours per week anyway) but we'll see how it goes. I'm mostly holding it together but I've had quite a few tearful moments today when it all seems to much - it's like I can hear this really strong positive person phoning everyone and saying I'm going to be fine (that's me by the way!) and then it's like there's this person underneath all that saying it's not fine and how the heck are me and my husband going to get through it! It is early days so we'll just have to take it one step at a time. It's hard to believe it's only 10 days since I had the CT scan toatally unaware anything was amiss and just 8 days ago I was having such a lovely 38th birthday still hopeful of a family but I know I've a lot to be thankful for too. It's all a bit of a rollercoaster of emotions at the moment and I guess we have to learn to take it slowly! When did you have your secondaries diagnosed and when were you first diagnosed if you don't mind me asking? Take care and do keep in touch. Anne ... View more

Hi Angee, Thanks for your kind words.. It's still a huge shock - I go from feeling very strong and positive to just crumpling under the weight of all the worry and fears but it's early days and I guess it's just one step at a time. I'm more worried about my husband really at the moment but I think it'll be easier once treatment begins and we get into a routine with it. I've been reading about your photography project and would like to take part if there's room for me. I very much hope to go to the Cinderella Day so maybe that would be the best photo opportunity. I know what you mean about people saying how well you look. My next door neighbour was only telling me a fortnight ago that I looked as fit as a flea and there couldn't possibly anything wrong with me and yet I get diagnosed with secondaries just a fortnight later! It's so good to know that I'm not alone with this. Best wishes, Anne xx ... View more

Thanks very much Funnyface. It helps so much to hear someone still able to enjoy life despite having secondaries. I intend to make the most of life whatever it brings but I'm still reeling from it all. Most of the time I feel strong but then I'll burst into tears but I guess that's natural and it's very early days for me! I hope I can get to the Ritz as I've always wanted to go there. Take care, Anne ... View more

Denio, I am in South Wales (Ynysddu near Blackwood)and am keen to go if I'm allowed to gatecrash this party! Was only diagnosed with secondaries to the lungs and lymph glands in neck last night! Treatment not started yet and going to having weekly chemo so will have to see how I am and when the Ritz thing is but would love to go if I possibly can and I know London quite well having lived there for 10 years and we go back regularly. Anyway it would be good to know if you're near me anyway if you ever fancied a chat. AnneS ... View more

Thanks so much Allie, It does help not to feel alone - although I wish none of us had to go through any of this! take care, Anne ... View more

Hi Hemly and everyone, I was just diagnosed last night (following a routine CT scan and then PET scan)with secondaries to my lungs and lymph nodes around my neck. Am 38 (as of last week) and was first diagnosed with just one lymph node affected in Dec 2002 at 32, had mastectomy, FEC chemo, 2yrs Tamoxifen then came off that to try unsuccessfully for a baby for a year and then found tiny lump last March 2007 which was a small primary recurrence on the scar which I had removed and then 4 weeks of radio last June. I delayed going on Arimidex with Zoladex as still hoping against hope to be able to have a very much longed for first baby. My oncologist agreed to refer me to a fertility clinic at my recent check-up but offered tumour marker tests and a CT scan just to check all was ok before embarking on this. Things went downhill from there and the last ten days have been a blur to be honest! My oncologist has recommended Avastin for me too along with Taxol chemo. The Taxol will be given weekly and the Avastin fortnightly and I hope to start as soon as it's all set up. I'm very lucky that my husband has private insurance through his work as I understand Avastin is not yet licensed on the NHS. I'd be interested to hear how others get on with Avastin and we could compare notes. My oncologist seemed to be playing down the side-effects yesterday and seemd to think I could go on working so I'm going to play it by ear. I had FEC last time and round the loss of energy the hardest thing to cope with but I wasn't working at all at the time. I'm determined to keep positive. My husband is finding it very difficult to accept but I'm just in pragmatic mode at the moment. Take care all, Anne ... View more

Tea at the Ritz sounds fantastic! I was just diagnosed with secondaries last night as just 38 (my birthday was last week) - still reeling as it was after a routine CT so very small in lungs and no symptoms as yet. Hoping to start Taxol with Avastin in the next fortnight - so can't commit to a date until my treatment starts and I know what's going on. If I can say yes but am able to drop out if I can't make it through treatment and side effects then I'd be delighted to join you all. Would be so good to meet people dealing with similar things and fears. I'm in South Wales but am happy to get the train to London in the day - will have to have 8weekly PET scans there anyway so maybe could combine but go ahead with a date that suits the majority as I can't be sure at the moment with treatment not yet set up. I'm on the other site as bionicwoman if anyone needs to PM me about details etc. ... View more

Hi all, I am just reeling from the news that I received last night telling me that I now have secondaries in my lung and in lymph nodes around my neck. It was just lovely to read that positive story about the lady of 54 still living with mets after 18 years! I was first diagnosed in Dec 2002 at 32, small primary recurrence last March and just when we'd hoped 2008 would be health-problem-free it comes back to haunt us! My husband is in bits and finding it very hard to accept but I'm just keeping it together at the moment as I intend to fight as much as I possibly can. I'm lucky to be symptom-free at the moment as it's been picked up from a routine (but only one I've had) CT scan. I know I've now got to let go my hope of ever having a family. We were about to start trying just as I was first diagnosed and have tried unsuccessfully since. I try to think it's for the best but it's not easy. I hope to start Taxol and Avastin in the next couple of weeks. Take care everyone Love AnneS ... View more

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Thanks for all your comments. I've just joined the "other site" today but haven't got the authorisation yet to browse the forums but will be doing. Looking forward to meeting you Louise, and the others you've mentioned. I'm travelling from near Newport in South Wales. As the trains are rubbish on Sundays I'm coming by train and staying in a b&b in Shrewsbury on Saturday night and then will wait at the train station for pickup on the Sunday. I have no idea what to expect really but I suppose that makes it more fun (hopefully!!). I'm 37 by the way and had a primary recurrence diagnosed in April this year after initial diagnosis in December 2002. Finished radio end of June and just went back to work a fortnight ago. See you on Sunday! AnneS ... View more

I completely agree with you Nancy. I was very sad to read of Jane Tomlinson's death also. She has achieved so much in her life in spite of this terrible disease and should be an inspiration to everybody with or without breast cancer. My thoughts are with her family and friends at this time. I never knew her but was always interested and very heartened by her many achievements. She was an inspiration to us all. Anne (37) ... View more

Sorry to have gone a bit quiet! Hi All, Glad to hear that a few of you managed to meet up. Just wanted to say that I'm sorry I've not messaged recently but the results of my recent op were not as expected as the surgeon had though it was a DCIS recurrence but unfortunately the lump was invasive afterall and instead of having no treatment as he thought I'm to have radiotherapy so the last week we've been a bit shocked even though there's no evidence as yet of any spread. It has been over 4 years since I was first diagnosed and it's a case of here we go again! Anyway I'm probably not going to be able to meet up until the radio is out of the way. We've a holiday booked on 1st July which the hospital are doing their best to get things completed by then. Just thought I'd let you know but would love to meet up after things have settled down again! Take care all. AnneS ... View more