cancel
Showing results for 
Search instead for 
Did you mean: 

Terrified

18 REPLIES 18
Member

Re: Terrified

no fries thanks I know just what you mean. This thread has calmed me, particularly in the days before my treatment plan was in place. There are so many new treatments available; google is way out of date so don’t browse is my advice! My emotions are still all over the place, but I’m looking forwards again and allowing myself time to adjust. This is a safe welcoming space where people really understand the journey x
Member

Re: Terrified

I'm so happy to have found this thread.  Diagnosed with  met on the spine, I will be seeing the onc in 2 weeks and won't really have any more details until then.  So of course I've browsed google and it seems to just say this is a death sentence.  I am hopeful after reading this thread that it might not be.  

Community Champion

Re: Terrified

Thecatswhiskers, The only advice I can give you is about how it's not worth it to sit around wasting time pouting. I was dx with mets the day before our Thanksgiving 13 years ago. They told me it wasn't an immediate death sentence that I probably had 2 years. Gave me hormone injections to shut down my ovaries. Well between being scored, a holiday and Christmas on the way and those injections I was a mess.We traditionally put up our outside decorations the day after Thanksgiving or that weekend. Well my adult kids and my hubby dragged out every decoration we ever owned . Then went to the store and bought more. You could tell they were decorating like it was my last Christmas.I was inside crying and watching. I felt like Scrooge being led around to see Christmas past, present and future. I felt they weren't my family anymore. That I was only allowed to watch them through a window having fun and not be a part of them. I also wasn't ready to look at Christmas stuff. I felt their desperation to make it perfect. Finally, I lost it and to l them all t o stop. That I felt like Christmas was being rammed down my throat and nobody asked me how I felt. Hubby was going to take it all back down. I told him to leave it up bc then I would be upset it was down. I just as k ed that they give me time to accept this. Well, I was a mess for days. Then one day I said I can't live like this. I can't be miserable for the next 2 years.That I needed to put my smile back on and start living again for however I had. Thank goodness I got my act together. I am lucky I have 13 years in now. I would have been crying and miserable for 13 years. Have your tears, stomp your feet, scream but please have good times too. FF

Member

Re: Terrified

Hi FF, thanks for posting, I agree keeping busy helps, friends are taking me out and am chasing the referral tomorrow.  CT scan next Friday so waiting for results is scary and sleep impossible.

Early days... Deep breaths and serious on line shopping xx

Community Champion

Re: Terrified

Thecatwhiskers, I don't have any experience with skin mets, so can't be much help. I live in the USA so don't know which hospital would be best for you. With what your oncologist is saying I would be looking for the best of the best! It takes time to calm down. We have all had our tears and anxiety. Keeping yourself busy is the best. My house gets clean when I'm full of anxiety. I do all the chores that I don't get, too. I don't like medication, so I stay away from it. Might have a glass of wine if I'm really stressed. Hugs and hope you get a treatment plan in place soon. FF

Member

Re: Terrified

Hi, i'm 58 and in similar situation so totally understand you fear.

 

Recent breast cancer recurrence, total right MX followed 2 MTHS later by positive biopsies on wound are most probably skin cancer.  Tumours grew into my vascular/lymph system and chemo's only thing to maybe prolong my life.  Already had chemo/radiotherapy on this site.  Surgeon was honest and said because of speed and nature it doesn't look good and is quite rare.  Covered in growths.

 

SO 2 days later and waiting for CT scan appt/results I'm in a state of shock, terror, disbelief and anxiety

 

Any ideas for coping except valium and gin and tonic!!  Referral to counseling, 2nd opinion planned as Oxford are one of leading cancer specialists.  Have great friends but no spouse or family so daunted by arranging the inevitable final stages.

 

Thanks if you reply, I desperately need to share

 

Ps you could ask to be referred to Royal Marsden London who may have trials. I saw a top oncologist there first time around.

 

 

Community Champion

Re: Terrified

We are real people here that understand fear and can relate to how you feel. .we all have bad days but do have a good day when we think we can beat this.
My mets came back after 11 years. .when i had totally forgotten all about bc ..it's sneaky .
Member

Re: Terrified

I so love this forum. When I am awake with my fears I read your posts and it calms me. Thank you again for your invaluable support
Community Champion

Re: Terrified

JayRand56, Welcome! You definitely are not a hopeless case! My breast cancer mets were discovered in Nov 2005 at the age of 51! Ten years after my primary. This marks 13 years of mets for me. I have lung mets and Mets in chest lymph nodes. Possibly bone mets. One scan says bone mets the other says osteoporosis. Any boo, I've had chemo, radiation and hormonal treatment. I still work PT. I've done Very well with my treatments and truly haven't had many side effects. 

 

When discovered I was a basket case! Then one day I decided I didn't want to be miserable anymore. That I needed to quit crying, smile and enjoy what time I was given! Do I have bad days? Oh yes, every now and then! You too will adjust, it takes time. 

 

FF

Member

Re: Terrified

Hi Jay am also a member of the 3am club , my mind thinks all sorts of things .look through all the forums too .Then tend to be tired during the day .There are lots of lovely ladies on here , who are so supportive, it has really helped me .Stay strong xx
Community Champion

Re: Terrified

Hello Jay
We all do the 3am wake up ..I'm used to it ..have a kettle in bedroom so make a hot drink, custard cream bicky and play or shop on kindle. .I find I then drop off for a few more hours Kippo then.
I find just laying there fidgeting doesn't help and quite enjoy my ME time. . .
Good time for online Xmas shopping too !!!


Member

Re: Terrified

Thank you so much Ramade. My mind feels very powerful and morbid at the moment. You won’t believe that I work on mental health and spend my time counselling others!
Shock is an overwhelming thing x
Member

Re: Terrified

jayr, you are not a hopeless case. there are a lot of treatments for you. Some of us have lived for many years with cancer here and there in the body. Go to all your appointments, take your list of questions, take someone with you if you can, i do because i generally only see the consultants mouth moving but my husbands listens to every word and tells me everything when we get out. Make sure you eat well and try and sleep, there are plenty of friends here in the 3am club.

much love to you

Ramade

Member

Re: Terrified

Some better news I hope. My bc nurse rang on Friday to let me know that I will see my onc this next week. My scans were discussed at MDT. I asked her if she could tell me if I was a hopeless case- she replied 100% not, and that, as I hope, the disease can be controlled to give me the chance to get on with my life.
Until I know more I am still tormented with anxiety, and not looking forward to treatment, but I feel a glimmer of positivity.
My sleep is poor after around 3am, so I read through the forums on here for some reassurance that I am not alone
Member

Re: Terrified

Hi, I'm newly diagnosed, today in fact, so still in shock. I had breast cancer 2013, MX, chemo, radiotherapy and 5 years of tamoxifen and now its in my bones. I'm a strong  positive person but this has crushed me and I feel like I'm on death row. I'm starting g a vegan diet, by way of distraction if I'm honest, to give me something to focus on. Start treatment on Tuesday. 

gmc
Member

Re: Terrified

 Hi Jayrand56

I can truly identify with your post as I'm in much the same situation. My emotions are all over the place and I still don't think I can believe this is happening. I had BC in left breast in 2002 then again in right breast in 2014. Despite the SE of hormone pills I felt better than ever recently so was mortified to be diagnosed in August with bone and lung mets following investigations of a non-healing rib fracture. I am seeing a counsellor but not too sure if that's helping really. I think that hopefully this  thread may be a good way to let off steam and chat to others feeling the same.

Gill x

Member

Re: Terrified

Thank you so much for your reply. I am full of tears and trepidation but everyone is so kind x
Highlighted
Community Champion

Re: Terrified

Hi Jayrand56

No offence taken, in fact that's the way we normally 'welcome' ladies to our exclusive club - saying that it's somewhere we're sure they never wanted to join.

We all understand the fear and dread of the diagnosis of secondary BC (or mets as we call them).  Some of us, lkie myself, have been living with SBC for many years and therefore are a bit more removed from that initial feeling however we all still remember what it was like (well, I do!)  I was sure I was going to die pretty much straight away even though I was having chemo - that did make me feel like I was dying. However 10 and a bit years later here I am.  I've had lots of differnt treatments over the years which sounds so awful but to be perfectly honest I have not suffered from the side effects too much and have breaks in between the harsher treatments with some kinder ones.

I am hormone positive like you are so will have have experience of the types of treatments that you will have.  Generally hormone treatments do run out of steam but the fact that Anastozole kept everything at bay for 5 years is a positive.  In fact it did the same for me, after I'd had my chemo, and kept my bone mets stable for nearly 5 years (my secondary diagnosis came nearly 5 years after my primary). There are plenty of treatments out there and pretty much all of them have been used at some point by one or more of the women on this SBC part of the forum so there's plenty of experience, support and knowledge about what they are all like.  I think all of us have felt it easier to cope with this diagnosis once we have a trearment plan in place.  Don't panic if it takes a while for your oncologist to start you on something, it often takes a few weeks.  My advice for that time is get on and enjoy some treats, if you feel you can, beciuse after that it does tend to turn into a bit of a pain with extra hospital visits etc but this does calm down dpending on what treatment you go onto.

A lot of us, whether we have bone mets or not, or have other mets 'meet' on the Bone Mets please join in thread althouygh other threads can become very popular as well, particularly those for specific treatments.  To join a thread you just need to be logged in and go to the latest post for that thread and hit 'reply' and it will add your post onto it, it doesnt mean you're just replying to the last person.  Be aware the forum is open and therefore anyone can read it whether they are logged in or a member so be careful what you write about personal details.

Good luck and keep us informaed of what your treatment plan is when you know or ask us any questions you might have before your next appointment.  Someone is bound to be able to help.

Nicky x

Member

Terrified

I'm sure that none of you will take offence when I say that this is a club I hoped never to join. i am 62, and I was diagnosed with BC 5 years ago and had lumpectomy, chemo and radiotherapy. I have been on Anastrozole ever since.

I saw my GP this morning after my CT last week. They have found secondaries in both my lungs and bones.

I am so frightened, and terrified that when I see the onc they will say that there is nothing they can do to help. I know that I won't be cured, but I want to live some more and see my new garndson growing up