Hi
I was diagnosed nearly 6 years ago and for about 5 years visited BCC everyday, initially to receive support but that has now changed into offering it. It helped me through some many difficult times and being a mum to very young children did lesson the isolation considerably. Receiving the right support at the right time is important to your mental recovery. Be kind to yourself, it does get easier.
Becks xxxx
Hi Everyone
I got information about this site from a leaflet given to me at the hospital and have logged on most days since my dx in May. I can’t express how helpful I have found the forums. I think it is really important for people who can spare the time, to log on well after treatment. You give hope and inspiration to those of us who are just starting the journey.
alex
PLEASE Ladies,keep posting.
I’ve just finished chemo,surgery planned for Jul 14th then it’ll be radiotherapy.I’ve found this site invaluable for advice & support but not enough said about all those who make it through.
Sometimes we just need to hear something positive,light at the end of the tunnel etc.
Especially from those of you who are years on from all this.I need to hear it,so thanks to those of you who continue to post.
Keep it up!
All the best,
Helen xx
I was diagnosed June 2007, had surgery, chemo then rads and am now taking Tamoxifen. I didn’t find this site until well into my treatment but was so glad I had found it. I had many queries about how I was feeling during treatment but not serious enough to ‘bother’ the professionals. Searching through the topics on this site helped me find numerous others with the same questions and many with the answers.
Two years on I still get strange aches and pains, lumps and bumps and again I usually find I am not alone. Although I don’t post that often the site has been and still is a great help to me. I will continue to log in in case I can answer posted questions and help someone else the way I have been helped.
Jo
xx
Dont know what discussion page to go to but maybe someone here can help me with my question.I was dx at beginning of Dec.had lump and some lymph glands removed 2 weeks later.Started rads at beginning of Feb and finished end of March.I am due for a check up at hospital on Thursday and dont know what to expect!Will they just check operation site and see how your coping or should I expect another mammogram!Trying not to worry about it but its getting too close for comfort!Anyone out there that can help I would be grateful.Thanks Joyce.xx
Hi Joyce
I’m about a year ahead of you, had a mastectomy then just rads which finished Feb 08.
Yes the check up was just a feeling around the site and checking arm pit and around neck. I continued with 3 monthly check ups for a year, alternating bewtween the surgical team and the oncologist’s team. The check up varied each time depending on who was doing it, sometimes my tummy was prodded (liver I think) and other times not. My last 3 monthly was in May this year from the onc team so back to see them in May 2010 and the surgical in Jan 2010.
I had my first mammogram a year after the lump had been found.
If you have any questions you want to ask do write them down and take them with you as I find they tend to go out of my head in the middle of being examined.
All the best for Thursday - I’m sure it will go well.
Mx
I think one of the reasons I still keep coming back somewhat obsessively to the forums(even if I don’t post very much) is because Leicester doesn’t do many check up appointments after you complete your initial treatment - and I seem to need to be in touch with other folk who have been thro’ the same things as me and are expressing the sort of hopes and fears that I feel myself.
In my case, (after lumpectomy, WLE 3FEC and 3 Tax and 15 rads; Grade 3 stage 3) I finished treatment in Jan.09 and I’m now in the middle of a 9 month wait before I shall be seen again- and then it’s by the surgical team and not the oncologist.
Apparently the research shows that more frequent check-ups don’t achieve any better outcomes- but even though we all want desperately to be free of hospital and treatment, I think a lot of people are actually reassured by being seen more frequently at least for the first year or two - and having an opportunity to ask those questions which still keep bubbling up.
Some days I just feel I’ve been cast adrift without a paddle, especially as most people I know now assume I’m “cured” and I can now resume ‘normal service’ -like I’ve just had a broken leg or something!
Thanks Magsi that is reassuring least I will know what to expect on Thursday.Its good to talk to others who have already been there to know what to expect.Will let you know how I get on,hope everything is as it should be.Thanks again.Joyce.xx
Hi Topsymo,
its such a difficult tiem after treatment has ended - such a feeling of being in limbo, so I am quite glad that the hospital I am under does 3 monthly checks for the first year. Although I had read, as you had , that more frequent checks aren’t linked to better outcomes, just reassuring and a chance to ask qestions.
Joyce, I have just read a thread -
breastcancercare.org.uk/forum/viewtopic.php?f=31&t=22576
where someone is commenting on their experience of a checkup and it wasn’t like mine so you may like to read it before yours!
All the best for Thursday.
Mx
Thanks Magsi have read it and hope I have more luck than some of the others on that page and at least dont try to rush me out the door quickly!Thanks again.Joyce xx
I rarely post anything but often visit this site as I find it comforting and that most of what I feel is shared by others here so it reassures me that I am not totally crazy and not coping.
Topsymo, I agree with you about the lack of support after initial treatment, and feeling cast adrift.
I was treated in Leicester and had the same regime as you. I finished treatment in march. I see the surgeon in september then my next appointment with the oncologist is Jan 2011!
Best wishes to all,
Rachel.
Hi, Topsymo, your post really struck a chord with me. I too have been absolutely amazed at the amount of people who think that once treatment is over, that’s it - cured - move on!
My treatment finished end of March ( lumpectomy, 8 chemo, 4 weeks radio, triple neg) and, although some of my frineds and family are still very supportive and ask how I am, to my astonishment many seem to expect me to be completely, physically and emotionally, back to what I was pre-diagnosis.
To be honest I have found it harder since treatment finished as I myself hadn’t realised how much I would be affected emotionally. I probably could do with more support now than when undergoing treatment. Take care.xx
Hi all.Sarn26 feel same way as you do.I was really lucky during my rads and had only minor problems finished mine end of March.The only bad thing was Everyone told me I was looking great considering what I had been through but like yourself was feeling pretty raw inside and felt would it have been better if I looked bad and then people would not expect so much from me.Was at hospital for check up on Thursday and got good report but today for no reason I am weepy and feel worse than when going through treatment!Does not seem to be any rhyme or reason for it.Least we have got each other on this site that are all feeling same when family and friends give us a hard time.Take care all.Joyce xx
Hi there
I too don’t post often but visit the site most days to check on various posts. As you’ve said, after surgery, chemo and rads people, including family, think I’m cured! They seem to think it’s like having flu’… and I find myself ‘biting my tongue’ because deep down I really don’t think I’ve finished with ‘the beast’… it’s just a matter of time!
I know those who care for me want to believe that ‘it’s over’ and I will go along with that, but it’s not how I feel.
That’s what I get from this site - understanding!!!
Mal x
Yes- once or twice when people have asked how I am now, I have actually said “I’m really fine - and will be until it comes back” Then I feel guilty cos’ they don’t know what to say .
It’s hard for other people- they want to say the right thing and it’s mean to make it harder for them- but exasperating sometimes that they don’t realize that you either live with breast cancer - or you die with it.
I have to confess that before I had BC I did sort-of believe that if people survived 10 years they were ‘cured’- so I really can’t blame other folk that they believe this too.
I feel the same as a lot of you ladies. I genuinely don’t know what to say when people ask how I am, it’s something I really struggle with. I’m having side effects from Tamoxifen and have breast and arm lymphoedema, but they all think I’m fine!
Hope everyone’s having a good day!
Kinden
x
hi ladies
i was diagnosed may 2006 ,lumpectomy grade 3 and lymph node 7 removed all clear. 3 years on, have yearly mamograms and now have probs with my smear under hospital smear checks every 6 months!!.
I cant belive it has been 3 years!!! time as flown by then again first 6 - 12 months were a blur…lol and if it was not for this site i dont know what i would have done, no matter how many docs or leaflets you read it doesnt tell you what you wnat to know.
ladies on here have been brill , you will find someone out there who is same as you , as at the time i was on the tact 2 trials and found group of ladies who were also and was really good chattin to them.
long live the site
take care simx
Hi All
I’m 16 months post diagnosis - 4 years of Tam left; just had 14th Zoladex (10 left to go, not that I’m counting).
I don’t come on here much now - maybe once or twice a month and mainly read posts. I’ve had my first mammo in April (NED) and see my surgeon every 6 months. For most of the time I’m feeling OK emotionally about the bc and so try to put it to the back of my mind. I get told regularly I look well and I say yes, I’m fine BUT what I don’t tell them is that my body hurts 24/7 - side effects from the Tam/Zoladex I presume but it’s reminding me morning noon and night about this damned disease. I can hardly walk when I get out of bed in the morning - I have to stand under a hot shower to unseize (not good for the flushes). My fingers, wrists, hips, back, ankles and toes all ache. I still suffer from insomnia - I’ve forgotten what it’s like to have a good night’s sleep. Luckily, the night cramps seem to have subsided. And to add insult to injury, my foo-foo’s well and truly dried up, sex is a thing of the past. Oh, and tena lady is now on my shopping list. And to round the picture off, I’ve put a stone on and my midriff has well and truly spread - upwards, downwards as well as sideways. Did I really have a waist before all this began?
I’m glad this site is here and I’ll continue to come on here every now and again - where else can we go to have a moan about this s**te, where we can be ourselves and be understood?
Take care everyone and keep on posting.
Claire
Hi,
I was diagnosed 2 years ago and was regularly on this site when going through my lumpectomy, WLE and radiotherapy. Still often look at the site although haven’t written on it for some time. This year, two of my colleagues at work died of breast cancer, one only two weeks ago and not expected, and although I am thankful that I am now coming up to my second mammogram with everything OK so far, it does now make me very anxious. Two weeks until my next Oncologist appointment and then another mammogram. This site does give support whenever you need it as other people going through what you are going through.
Sandra
I think its all about balance - as long as you have other interests and visit other sites where your cancer doesnt define you then all is good.
I dont visit regularily - I tend to come on when i need something (that sounds bad - how selfish!). i think its difficult to cope with the role having or having had cancer plays in your identity. I know my friends went through a phase of wanting me to stop referring to the cancer and the diagnosis. I was forced to move beyond it or loose peoples sympathy and attention. It was scarey and I realised I had become very dependent on the cancer for who I was.
I banned myself from refering to it or using the diagnosis as a “before” snd “after” moment. Its helped me realise that alot of my dreams, aspirations and issues have been consistent through my life. I am still me.
I no longer always define myself primarily as someone recovering from cancer but I still do somethimes and I came on this site today because at this moment I am really struggling and I need to feel part of a group that might understand that.
come on the site every day if you need to and perhaps start to visit other sites and build up other interests before letting go if this is working for you x