I have found the most support from those that have *been there, done it, had the diagnosis & really know how frightening it can be".
In Berkshire we are very lucky and have a very active closed facebook group run by 2 fantastic ladies.
I have posted around the forum sharing alot of all i have learned. And have nothing but praise for the likes of the forum, Macmillan, the Penny Brohn Centre ( but there are similar such as The Haven - in Fulham and Hereford i think) and Maggies Centres.
As on other posts i have found ACAS an amazing resource for employment issues.
The diagnosis & treatments are half the picture, after *active* treatments of surgery & rads had finished - i became incredibly fatigued. I was not improving from this sufficiently quickly & it felt almost at that point my problems started. For me - my breast care nurse sadly was not the resource i had hoped for & I found some of her comments insensitive.
Thank goodness for great friends & the support groups I have found. Hope you too find such groups / support.
I didn't have the time, energy or strength to go to any support groups during treatment or to seek out any psychological help - was just concentrating on getting dressed each day and making it to appointments... I am now trying to cope with everything that my head is trowing at me and sometimes I feel this is just as difficult, if not worse than the physical side of things. In short really appreciating the forums as I don't feel that I am so alone in my way of thinking, reactions and self-doubts. Going on the Moving Forward Course soon and so hope that that will help me also.
I have had the same treatment as you except that I take Anastrozole and I am just approaching my first post-surgery mammogram. I am a very positive, optimistic person but even I have the occasional 'wobble' now and then but I think that it is quite natural in the circumstances. I had twinges on and off for hours one day last week and felt a bit panicky but I think that my breast had just got squashed when I had been laying in an uncomfortable position in bed because I haven't had any since. Another lady who lives near me told me she feels the occasional 'twinge' too and gets worried. I take the following practical measures - I exercise every day without fail (the exercise DVD is filmed on a beach and has jolly upbeat music) and I make sure I get out and about and have plenty of fresh air and sunshine and I have an early bed if I feel very tired. Yoga calms the mind and meditation tapes are helpful too. I do agree with you that it would be good if someone could check the results at the hospital to prevent the agony of waiting but I suppose there must be a reason for this.
I too had op and rads last July. I consider myself 'lucky' as I had no chemo, so the delayed after shock and depression caught me off guard. Then the joy of night sweats and hot flushes really got me down. I have had two cysts drained recently and suspect a third one is in need of attention. Am trying not to
think it could be a reoccurrence so soon after December rads. I have found that my induced menopause has been made easier by drinking lots more water (I was getting regular sore throats and they have stopped), and my onc gave me permission to take sage, it has kicked in after a couple of weeks and has improved the severity of the flushes and practically finished off my night sweats. Also the Lady Magnet available at Boots comes highly recommended. It is nearly £30 but receiving fantastic reviews on forums.
Hi Wemblo, there are various national Face Book groups:
UK Breast Cancer Support
Breast Cancer Chatter
Breast Cancer Buddies UK
Breast Cancer Support
You could join those and then ask about a local group.
I found a Breakthrough Breast Cancer Facebook group Breakthrough Staffordshire and a Derby Breast Cancer Support Group on Facebook. Hope that helps.
I've just re read through this thread and you know what struck me and it is something I have seen on lots of other threads lots of us are writing a short snippet of what treatment we have had and then we put -I've had it easy compared to some...... While it is often true that there are people who have more problems/different treatments I think it is fair to say none of us have had it easy. Being diagnosed with BC is not at all easy. It is terrifying and life changing. I think we are so pushed into being 'positive' that we all try to downplay the situation.
Yes we do get on with daily life. We do grin and bear lots of unpleasant side effects and pain and we quickly learn that life carries on and for most of that we are ok But we are still terrified and the need for reassurance is never far away.
if any of you are in Berkshire there is a fabulous closed group on facebook,,, Berkshire Breast Cancer Support Group for ladies living or working in Berks. If you are not in our county you may find you too have such vibrant groups within your county. Best wishes all x x
It's so good to read your posts and know I'm not the only one feeling like this. I feel abandoned after all my treatment,(double mx with recon, no radio or chemotherapy) I had it easy compared to some but that doesn't stop me worrying that it will come back..or is still here somewhere. People see me at work with that fake smile plastered on and presume all ok...'well you're over cancer now aren't you' was a comment the other day...
I don't know if it is the menopause or the tamoxifen but by golly those sweats are not fun!!!
Welcome to the forums, this must be very difficult for you. I’m sure other users will be along to support you soon.
In the meantime, maybe you would like to talk things through with a member of our helpline staff who are there to offer practical information as well as emotional support. The free phone number is 0808 800 6000 and the lines are open Monday to Friday 9.00 to 5.00 and Saturday 10.00 to 2.00.
Hello just wanted to agree with your post.
I am feeling the same and it is 3 years ago today I had my last chemo. I was diagnosed at age 40 in Nov 2011 with triple negative bc which had spread to lymph nodes and I finished treatment in Sep 2012. Not a day goes by when I don't think about a dreaded recurrence. I thought it would get easier as time went by but I am finding it more of a struggle now! I think my downfall is that I hate making a fuss and didn't express my feelings when going through treatment. On the outside people think I am brave and strong but inside I am not!!
I also had my chemo at home and I think now that was a bad decision as I was totally in my own bubble and did not meet anyone in the same position. I wish I had chosen the option of having chemo in the hospital and perhaps I wouldn't feel so isolated like I do now.
I know it will take time and hopefully I will be able to go longer and longer without thinking of it but wishing my fellow fighters lots of love and strength to get through. xx
I am still having herceptin injections but had my first mammo last week since surgery, chemo and rads. I cant believe how frantic I am waiting for the results. I've convinced myself they are going to be bad and have started trying to plan my final few weeks/months. I know this is over the top but I can't seem to help it. I am keeping busy but black thoughts are never far away. I dont want to spend my time doing this but just don't seem to feel confident any more. When I was waiting for the mammo I was reading the Be Breast Aware poster, I check myself every morning in the shower and again when I get undressed at night. Each time I feel something different and really wouldn't know if there was anything to worry about. I had a lumpectomy and Sentinel node biopsy my breast is tender and painful with an obvious lump where the clips are and scar tissue.. I think I could drive myself mad with this. Waiting for the results of the mamogram is so difficult I think they should have someone at the hospital who could check them at time and let you know.