It will be 4yrs in Oct since DX, up to now no re-occurrance or secondaries which I am so thankful for.
However the ‘fear factor’ never really leaves me.
I do not come on BCC as often just have some free time today so browsing and found some good posts and thought I would do this one.
Also always want to know how people are.
Please reply if you are 4yrs plus and still coming on to the site.
I have managed to re-gain some confidence and had a holiday to America something I never thought I would do back in 2005. I do look to the future and my girls marrying and possibly grandchildren, BUT the little ‘fear’ gremlin often whispers to me, like the other day when hubby was talking about his lump sum when he retires ‘you may not be here’ Then I do feel envious of people who have never had a cancer Dx and the way they seem to live life with no ‘what if’ above them.
Could I ask BCC if they would consider doing a 4 or 5yr plus day or 2 day course? It would be lovely to meet up with other BC buddies and see if we think alike and fear alike. We could help each other and perhaps see what works for us all as regards living a ‘normal’ life.
I achieved my 5 years since dx at the end of May this year and I am thankful for the fact that I have no reoccurence or secondaries. But I often come onto the site becos the fear never leaves me and I like to think I’m a strong person, but this disease takes over your life no matter how hard you try to move on.
I lost a close friend last Sept who had the same dx and similar chemo and she died in 6 weeks after falling and discovering it was in her bones and elsewhere. It was very scary and still is to me and I still feel her loss every day. I,m sure other people are different in the way they deal with this - I dont know what i would do without this site as everyone around me assumes it is over and I am getting on with life.
Dont get me wrong - I realise how very lucky I am. Its just it does change how you think and act in life in a very fundamental way and its forever.
Sorry if this is a bit morbid but its from the heart.
Hi Liverbird,
really pleased you are doing well and good to see you posting.
I don’t think the fear can ever leave you cancer is horrid. I was just coming up to my 5 years when secs were diagnose, what a shock that was!
This week will be my 10th year living with breast cancer. It is only the past year that I have found it hard as the disease takes hold and the chemo struggles to keep it in check.
Love Debsxxx
I think your idea for a 4 or 5 year workshop is an excellent one and hope BCC will take it up.
I found the fear got easier after 2 years, though of course I did get incurable recurrence 3 and ahalf years after primary diagnosis. Its strange but in many ways the primary diagnosi was for me the worse thing…I had a poor prognosis (which has turned out to be better than onc expected…I am alive nearly 6 years later when I had bad odds for 5 year survival.) I did a lot of emotional ‘work’ at primary diagnosis thinking about my likely premature death, and nothing has ever been worse than the first moment I was told I had cancer…it was like a huge before and after screen had been smashed through my soul.
Good luck to everyone living with fear…I don’t usually go for trite mantras…but I’ve always rather liked ‘Feel the fear and do it anyway.’
Hi Liverbird,
I too think this would be a great idea.
I reached my 5 years at the end of January and was discharged from breast care unit in May…although I have open line to them…as my BCN says…you are never really completely discharged you are on the books forever.
The 5 year thing means nothing to me…I lost my aunt who was originally dx 19 years ago…to breast cancer 4 days before my discharge…I didn’t feel euphoric…in fact felt and still feel scared…kind of like at the end of treatment.
I am now no longer taking Tamoxifen…after taking it for 5 years…and I found that in itself difficult to cope with…as long as I was taking that little white tablet I felt I was still being treated…I know that now I am no longer taking it my risk level has gone up again.
I remember my GP telling me about a paitent who, on reaching her 5 years said she felt like a weight had been lifted off her shoulders…unfortunately I feel like a weight has been put on my shoulders!!
As time goes on I don’t think …‘’ I seem to be beating it ‘’…instead I think …‘’ how much longer will my luck hold out’'…not a very positive thought I know but I have never been one who believes in positive thinking…I believe in reality!
Hi karen, I too am 5+ years ned I’m triple neg and feel exactly like you - I keep wondering how much longer will my luck hold out …and boy have I been lucky so far!!
I am only 18months since first being diagnosed …and I thank all you lovely ladies from the bottom of my heart for voicing my fears.
I am sure if one more person tells me to be positive , I will not be reliable for my actions.
Love Bobbie
Hi
This is a very interesting and very real thread. I was 4 and a half years post diagnosis and my onc had even cancelled my final appointment with her as I was doing so well. I then found out from a routine mammo that I had a local recurrence and subsequently, from scans, bone mets. My fear had never gone away I had just pushed it as far as I could to the back of my head. I think one of the real failings of the media, and the charities are also to blame here, is the ‘I’m cured’ image. This has been mentioned ages ago on here but it’s no wonder all of our friends and family think we ‘cured’ as soon as we stop active/invasive treatment ie chemo. We live with this fear hanging over us and we do feel differently to all the non cancer sufferers. It would be good if our fears, and the truth, about BC returning was made more aware to the general public in campaigns etc. Maybe then how we feel would be better understood and not be dealt with so dismissively.
Off me soap box now!
Nicky
I have not been on for a while. I am 3.5 years on and still think about it coming back all the time - although it has got easier with the passage of time.
I have had some abnormal bleeding on tamoxifen which I have just had a hysteroscopy to investigate and they have foudn 2 benign polyps and a bit of endometriosis which they think have been caused by the overstimulation of my womb on tamoxifen!! Although they are thankfully not cancer and I only need a minor procedure to remove the polyps it’s not the point - the ***** treatment ie tamoxifen has just caused me more problems . They have said I have to take it for the remaining 1.5 years though as the benefits outweigh this “minor” problem.
I am coming up to 4 years in september. I too have a gremlin that keeps shouting at me. I keep waiting for the fear to go away but it never seems to. I am living with it better now, so thats a bonus. Had a few problems along the way but nothing too major. I was wondering if anyone could tell me what happens when you hit the 5 year point.
I reach my 5 year mark in September.I am just beginning to relax a little -even though I have been lucky enough to have had no problems at all since DX.
In that time I have ;
-had some ‘big’ holidays (Canada and QE2)
-took a new job in a different line of work and settled in so well I have just been promoted.
-seen my granddaughter start school -on the day of my op-and is now finishing year 4.
saw my oldest daughter get married to a lovely man(she came 3rd in her local race for life today by the way * insert proud Mum icon*)
waved off my Son to his new life in Canada.
The only thing now is that Im not looking forward in time and dont have plans for my retirement - I take each day as it comes. I do panic with each little pain or ache-that will never leave me.But I feel so thankful that I have had this time after that devastating Dx day.
I am not quite two years post dx and sometimes it seems a million miles away and at other times it’s too close, like a patch of skin that looks odd, could it be…
I was trying to anwser a question about pensions this week and found myself saying that I would definitely be taking the tax free lump sum.
I am coming up to 4 years but have had 2 recurrences, a few weeks ago I realised that I had started to go a day without thinking of the cancer. That was absolutly refreshing. This week I have been having pains on my mastectomy scar line. I want to wait and see what happens, hopefully its just that I have been overdoing things but the blooming nags have come back!
Sometimes I forget to check for lumps in the neck etc then I feel guilty of neglecting myself.
I don’t want to run back to the hospital ever couple of months because I worry they won’t take me serious. I guess I will wait until my September check up now as I am going on holiday in three weeks.
What a yo yo we find ourselves on ladies.
Hi Liverbird, nice to see you posting again, you were one of the first girls to reply to a post of mine nearly 3.5 years ago. Like you I still fear the return of this dreadful disease, but it is not in my mind every day.
My friend has just been diagnosed and had a mastectomy and reconstruction 2 weeks ago, I hope to give her a lot of support, I know how much I appreciated the support I got on this forum.
BCC…it seems alot of us who are 4 Years Plus have issues/concerns/fears…So would you please seriously consider a workshop…and maybe a Topic covering this area on the Forum?
I brought this thread to the attention of our manager who asked me to let you know that the topic you are discussing will be brought to the next Service meeting for discussion there. We’ll keep you informed of any progress.
I will be reaching my 4 yrs this December, I have a crap prognosis and my very blunt Onc put the fear of God into me from the first day we met. I was so fearful and depressed I considered refusing treatment as thought it would be a waste of time. It also spoiled occassions that should have been happy times as I was a crying wreck fearing it would be my last.
For me it has got easier and it had to otherwise I would never have relaxed or been able to genuinly enjoy normal family events. The more anniv I hit helps me to push it all into another part of my brain and being told this year by my Onc I am now anual appt’s and how I am pleasantly surprising her gave me a boost.
However at the same time I am also realist, I used to be on this site very regular on a younger woman thread, out of the 7 of us who met Oct 2006 sadly only 4 of us are alive. We have now decided to communicate via e.mail as needed a break from this site. I just pop back every now and again and I suppose having another 2 years of tamoxifen is a daily reminder.
Any update on this JO?
I hope its not going to be something we never hear a thing about again.
I am wondering if I will attend if anything comes of a day for 4yrs +. Had to put myself on the ‘rollercoaster’ today of ONC>SCANS>RESULTS, beccause of excruciating shoulder back pain.
I always wonder if I shall be up at the top on results day or down at the bottom.