How do you get past the fear of recurrence?

Annabella58

Nah, you are not insane....what they need to address in all of this is AFTER it all "ends" and we have PTSD. Big time!!

shoppygirl

Thanks Annabella! It is too true!

Claire_in_Seattle

Gai.....I have recently learned how timely your work is. Here in the US, there is a renewed focus on survivorship, and I certainly would have loved a road map 3-4 years ago.

I worry a lot more about having enough funds for the longer term than about surviving. Early in treatment, I looked at the odds and knew I would most likely be here for the long haul. In my family, this means living into your 90s. Now, I am in that odd space of knowing that it was the treatment I got that has afforded me those years, and why I am here right now.

I am not going to waste this precious time.

Sunsets are more vivid; fields greener; food tastier; snow fluffier; rain more soothing. I am doing the best work of my career. I am fitter than ever (just did a 40 mile group ride cycling earlier today).

I give back by doing work for a nonprofit devoted to helping brain tumor patients. One day, they will have the same odds I have. Plus, Seattle is rapidly becoming a world-renowned center for all sorts of solid tumor research and promising therapies. Exciting doings!

As I have other consulting work, I am one busy lady.

One thing I do see is how many women give up the little pleasures in life. I find this sad.....I will give as an example a chocolate, salted caramel, pear tart I had a couple of weeks ago. Sinful and decadent.....put a major smile on my face. I walked 1.5 miles each way to the pastry shop. I chatted with a young woman about cool cycling events to do. The perfect thing to do on a rainy Saturday. I did a run later too.

Another pleasure is sitting here in cashmere sweats.....post ride and post hot bath with a glass of lovely red wine. Making a delish dinner.

I am beyond thankful for all this bounty. - Claire

Gai

Hi Claire

What you are saying is so true and why I started providing an avenue for women to thrive after treatment.

Often when you are diagnosed you see the finish line as finishing treatment. Then when you do you have a clear understanding that it is possible to live way way beyond that. Most women I have spoken to have said that finishing treatment is the worst time as they don't know what to do then, they are not sure how to move forward with their life, the game had changed and they don't have the tools!

We were kept busy all through treatment and then when treatment finished we felt totally lost and have no plan! We even feel guilty because we should be happy but we aren't, and we feel lonely and lost and can't talk about that to anyone. Our friends and family want us back the way we were, like nothing had happened.

After treatment our needs go beyond medical and we need new life skills to move forward in a different way to how we had planned. The experience changes us and even invites us to step up.

For the past 4.5 years I have squatted in different countries around the world - Florence in Italy, Ubud in Bali, Singapore, San Francisco, Sydney in Australia and travelling through Europe, USA and South East Asia. My life has changed in the most remarkable ways and I just love waking up every morning to new experiences.

Every person I can help design what they want in their life and give them tools to have the confidence to follow it, is a joy! It is very often the "ordinary moments" that bring us such joy.

I am so glad you enjoyed the decadent tart - it sounds delicious. I enjoy a glass of wine as well, try your glass of red with some "Chilli Chocolate" it is a taste explosion!

Love and Gratitude

Gai

Kruise

Hi Gai - and the beautiful ladies (and husband) that have posted on this thread so far. I have spent the early hours of my Sunday morning here in New Zealand reading every post thus far. I have enjoyed reading all your experiences, hints, inspiration and philosophies. Each and every one of you are AMAZING! No matter where you are in your life journeys look at what you have learnt. We are all teachers and we are all students.

Tomorrow I have my last treatment day (radiation) followed by a follow up with my MO at the hospital. It will be a step into the unknown after that but I will take with me what resonates from all your advice and also know not to be too hard on myself.

I will share something with you all - that I do not tell many people - but with the 'safety' I guess of hiding on the Internet it makes it easier. I remember being born into this life and I have memories of being on the otherside. I know I didn't want to be born again. Life is hard. We are all here to learn lessons and when we go back 'home' again - it will all make sense. However - my telling you to know and believe 100% that there is nothing to fear in death doesn't necessarily alter or take away the fear that we carry with us on a day to day basis. But what if you did know about the life after death? Would it help you? Maybe some would say yes but some would say no - because their fear is about how their loved ones left behind would cope? But what if the world changed and everyone knew without doubt that there was no 'death' and we could all still communicate with each other no matter what dimension we were in - so being here physically wasn't necessarily a problem because your family and friends could 'tune' in and talk to you about things anyway - would that make a difference? What if everything we did or didn't do had a consequence? All of these things are true now but we ignore them or listen to scientists or experts who say no - these things aren't possible. Anything is possible.

Gai - you touched on it in one of your posts about living authentic lives. When you are living in fear - you cannot do this. Fear is negative energy. When you are living an authentic life - it is a feeling that is hard to describe. You are not just living for your own selfish existence - you are living for the good of all humankind - looking for the opportunity to help in whatever way you can - materialistic things and other things become insignificant. Already many of you have probably had a mindset change without even knowing - now it isn't about 'sweating the small stuff' any more is it? You have realised what IS important and most likely it is about loving yourselves and spending time with the people you love - not whether the ironing is done or the china cabinet dusted.

Use cancer as a gift to see life in a different way - how precious and beautiful the moment is and what you can truly do to make you happy. I'm sure it will involve love in there somewhere.

We are all human and we all have a time set out for us by God for when we will go back 'home'. So let's try to forget the fear, embrace acceptance and do what we can today to make the rest of our lives the best of our lives for all on this planet.

Love and Light xx

farmerlucy

Thank you Kruise. That is very beautiful.

lindacam

Hi everyone. I have been reading these boards since April but this is my first post. I was diagnosed April 4/13 with IDC locally advanced multifocal...2 tumors...3cm & 3.5 cm..2 lymph nodes involved on MRI. I believe this puts me at Stage 2b or 3a depending on the Dr. I have just finished 4AC and 12 Taxol...In 10 days I start 28 sessions of radiation..Then end of January a double mastectomy and reconstruction. ER+PR+HER-

I am 49 and have 6 boys ages 11-24...I am a registered nurse, run a smalll business and 3 dogs. My husband is very supportive but like everyone else I worry about recurrence and how to live my life during and after treatment...My family keeps waiting for me to be my old self but they don't understand that girl is gone!

Claire_in_Seattle

Hi Linda....sorry you are also facing mastectomy and reconstruction, but my story is that I am now BETTER THAN EVER. However, you are still getting hammered.

I would tell them that all this does take its toll, and of course, life is different. By this, I don't mean better or worse, but different than avenues we would have chosen otherwise. I think you should expect a year for things to settle down a bit.

Having said all this, I don't mean that you spend all that year sitting in a corner sulking or petrified with fear. But that you are still healing, and you won't feel yourself for a bit.

Can you plan something FUN to do prior to surgery??? Plus.....make sure you enjoy the holidays. You should be feeling fine by then, or no more than a bit tired.

Feel better. Get someone else to do Thanksgiving. Go walking with your dogs. Be good to your husband.

How to live your life will take care of itself. I will say that planning a "to do" list of fun things is a great help. Good luck. - Claire

lindacam

Thanks Claire. I have been doing this journey with the cup half full but without knowing grade or exact number of nodes I worry. I am in BC so Thanksgiving already done here and we had a nice dinner.

I am trying to do all the normal stuff but the fatigue is hard...I used to have tons of energy.

ByFaith

I just posted this on the Stage I forum, but you "read my mind," so I'm posting my question here. How do I cope with the fear of recurrence, particularly during followup exams? Here's my situation:

I'm 3-1/2 years out from my BC dx and go for follow-ups to my MO every 6 months. My general care, physicals and laboratory tests are managed by my PCP and my MO has access to these. I'm on a schedule of one mammogram a year and one BMA (to check bone density on AI therapy), alternating visits, and of course a physical exam each visit. I have a *very* difficult time with breast self-exam since post-treatment, so my MO suggested I leave this exam to them during 6-month follow-ups with them and my yearly PCP physical exam; their recommendation, since -- for me -- literally everything feels like a potential problem and causes false *high* anxiety. I used to have OCD and it returns when I'm anxious, so I don't perform self-exams short of general bathing and observation. My original tumor was not felt as a lump, rather it was found only on digital mammogram.

This week I have another BMA, which is likely to show osteoporosis. However, it's the physical exam that produces SO much anxiety for me in the days leading up to my visit. My MO couldn't be more uplifting or kind, so that's a blessing, but I have a question ...

If you're ever afraid of follow-up visits, what are your coping strategies and how do you calm yourself? I do pray for myself and others, but still get anxious. I feel ashamed even asking due to my early stage DX. Although I do have anti-anxiety medication, it just makes me sleepy AND anxious. Again, this visit will be a BMA (always includes some sort of spine x-rays) and a physical exam. How do YOU cope if you become anxious? I don't want to live a life of fear. Thanks.

Gai

HI Dawnsm

I understand how you are feeling and have spoken to many women who have experienced similar occurrences particularly in the lead up to doctors exams. I also had fear leading up to appointments, just after treatment finished, so I wanted to get to the bottom of why this happened and how to change it.

I have recently wrote a couple of articles to answer these questions. I thought they may help you understand it and then move past it. Please let me know if I can help you further, happy for you to DM me if you need to.

Gai

How fear works:

http://gaicomans.com/2013/08/06/the-science-of-fear/

How to change your focus:

http://gaicomans.com/2013/08/06/power-for-focus/

ByFaith

Hi Gai,

I believe what you do is a tremendous blessing to so many women. Thank you so much.

So many people without a serious diagnosis like cancer don't understand what goes on *after* treatment is over, and those of us with a diagnosis may lack an adequate support system, as is the case with me. I want to overpower my fears in life.

I was surprised by the prompt reply as it's late where I live, but then I see you live in Sydney! Summer there now? I hope you're enjoying glorious weather!

Since it's late here, I've sent your two article links to my email and I'm going to read them over coffee in the morning.

Glad to have "met" you here ….

Thank you !! {{ HUGS }}

Dawn

Gai

Thanks Dawnsm

I work with women post cancer treatment because so much help is around when you are diagnosed but so little around after treatment is over. From my experience that was the worst time! Surprising but true. I have heard it described as feeling like a "warrior without a war".

I sorted through it and worked my way through it and now help other women to do the same.

PS: Actually I am in San Francisco at the moment I travel 6 - 9 months of the year now. It was part of designing the life that I love!! I return to Sydney next week for the summer

Take care

Gai

Gai

Welcome Lindacam

You are still in the middle of it......and Claire is right having something to look forward helps keep your mindset looking forward rather than back.

I also found that having a gratitude journal and meditation can really help to keep you focused on positive things, events and thoughts rather than negative. I wrote this article in response to earlier posts on this thread and thought it might be helpful for you.

http://gaicomans.com/2013/08/06/the-power-of-daily-gratitude/

Listen to your body and rest when you need to. I had AC as well and it can knock you around a bit even when have finished the course of treatment as it builds up in your system. Each one builds on the one before so you feel the effect more strongly to more you have, it can take a little while to get it out of you system after you have finished.

Take care and let us know what support you need

Gai

Gai

Very true Kruise

It is an amazing shift when you step into designing, living and trusting your authentic life

You have probably seen Brene Brown's work on vulnerability http://www.ted.com/talks/brene_brown_on_vulnerability.html

and shame http://www.ted.com/talks/brene_brown_listening_to_shame.html

What an amazing woman and so much insight to share, I can relate to her struggle and fight against vulnerability. When it knocked on my door I choose not to answer the door believing (incorrectly) the vulnerability was weakness.

My life changed when I open the door, invited it in and finally made peace with it. Not sure if it was exhaustion from fighting it or curiosity. The need to live authentically followed quickly after that. It wasn't easy but it was worth doing the work and learning the lessons not matter how difficult at the time. It really transformed my life in a way I could never have imagined. Providing an avenue for others to come along for the ride when they're ready is bliss

Thanks for joining us here

Gai

Kruise

Thanks Gai for the welcome and for sharing those links. Yes Brene certainly is an amazing inspirational woman - an earth angel for sure! And so are you! I am sure you have learned to tune into your guidance with meditation as I really needed to hear those messages today - I have finished my treatment 11/11 - and so the new beginning starts.

Another great thing to do Dawn also is to practice positive affirmations daily. Even small ones like "I am totally healthy and well" are good. Keep saying it - and believing it. Have you ever heard of Louise Hay and her book 'You can heal your life'? Well worth looking into if you haven't. Also books like 'the Secret' & The Power' are good too.

Much love to everyone - god bless xxx

indenial

Dawnsm -- I have dealt with high anxiety & OCD most of my life too and it sure hasn't been helped by being diagnosed with cancer! Health issues have always been one of my hugest triggers/worries so cancer has kicked it into overdrive!

I have been working hard on facing & accepting my mortality, and that really helps, but apparently my concerns about health issues aren't just around dying but around everything else too -- doctors, hospitals, undiagnosed problems, tests, treatment, etc.

Last week I went to my first cancer support group. It was a meditation & expressive therapy group and took place in my oncology building. I have to say, it was amazing to do something so positive, peaceful, and relaxing in a place that up to now had been such a source of anxiety & misery! If they don't offer support groups at your place, you could try sitting in the waiting room on a day when you don't have an appointment, and do your own meditation... I really feel like it has transformed the place for me.

I also do a grounding exercise when I'm at the doctor's. I notice 3 things I see, 3 things I hear, and 3 things I feel. It calms me down really well & helps me not get carried away with my anxiety. I also find bringing my kid (or a friend) to appointments helps me stay focused on the present instead of on what's going on in my head.

ByFaith

Thanks InDenial .... I appreciate your reply. I haven't attended a cancer support group because I thought it might worsen my anxiety. I try to forget about BC as much as I can. However, you say it helped you, so I'll check into my options.

Your coping "exercises" sound very helpful, and I'm so glad they're working well for you. I'll be using them myself. I do try to bring someone with me (particularly certain appointments), but often it's not an option. When it is an option, particularly since there may be a few hours between testing and my doctor appointment, having someone with me truly does help.

Update: My daughter overheard me asking my husband just now if he'd be able to adjust his schedule to accompany me, and she insisted on taking me herself. Totally insisted. I certainly could do it without her (haven't we all gone alone), but she 'll be really great company.

Gai

Hi

I thought you might be interested. I am being interviewed by Dr Shani Fox about moving Past The Fear Of Recurrence. You can register to listen in here.

The interview is at 5pm (USA Pacific time)

It is in her series Survivor Stories

Gai

summergirl1

Hi all, I was dx with grade 3 ILC with lymph involement in May 2011, had surgery, chemo, radiation and am now on aromasin, I struggled a lot after tx ended with the FEAR of recourence and it was starting to consume my life when in fact I should have been enjoying being in the land of NED, One day while crying with pure fear prior to a body scan I was about to have my OH who was probably so sick of it at this stage just said "look you have got to stop worrying yourself sick like this I could walk out the door right now and be hit by a car and die none of us know what tomorrow will bring so you just have to enjoy today" although I thought he was a bit harsh at the time but something he said snapped me back into the reality that none of us are in control of our destiny even if we are not dealing with a cancer dx so I live by this daily and try to enjoy every minute of every day and dont think about statistics anymore. it has really helped me..

Carolehebert

I was diagnosed in October 2011 with small children I was devastated it's being 2 years and I'm still scared of recurrence and tks to this site I have hope .

Stage 3 1.7 cm tumor 9/11 lymph nodes hormonol positive her2 negative