Hello,
New to this! I’d like to be able to talk to others in similar situations though I am not very confident with the computer!
I had breast cancer 8 years ago- surgery,chemo,radiotherapy,herceptin. All took over 2 years but I coped ok then. Found out I’d developed secondary cancer last semptember -lung mets that have affected the nerve in my back (droopy eyelid). Just had 6 months weekly chemo and herceptin, and tumours have shrunk. Have now been given a break (apart from 3-weekly herceptin) to see how quickly cancer returns (scans every 12 weeks).
Terrified all the time of the cancer returning, can anyone give me advice on coping? I am finding that the anxiety and depression are worse since I stopped the treatment and even feels worse than the diagnosis. I worry about every little pain I get and spend all day in bed worrying but feel too tired to go and do anything.
Any advice would be appreciated!
Hi Anne,
Welcome to the forum. Sorry that you are feeling so
down - I think it’s quite normal for us to feel anxious or down at times
when dealing with this disease; and we all have different ways of
managing things.When I was first diagnosed with mets I went to see an
NHS health psychologist every week for a while and this helped me quite a
bit - and I still go from time to time and especially during difficult
periods. Apart from that the main things that are helping me cope for
now are keeping busy - especially with things I love doing - and having
some short to medium term goals. I think some people also use anti
anxiety medication and I will certainly consider that if needed. The BCC
helpline can also be great if you just feel like talking to someone.
I
worry about pains too. I think it’s so hard not to in our situation. I
try and think whether it’s something I’ve had before and it wasn’t
caused by the cancer then so may not be this time either, and then give
it a week or two and then phone my breast care nurse for a chat if it’s
still bothering me.
Best wishes,
Tournesol
Really sorry to hear you’re suffering and feeling so alone with it all.
I recognise that feeling all too well…
I suffered with depression before and of course it was hell with the BC dx. I recommend you share your fears here on-line or with helpline or your own support system but don’t keep it all in… Do try and share it…
I know it’s not easy but talking can help air some of those awful gremlins that race around our heads!
If you feel you have no one do try the Samaritans especially if it’s night time and you can’t access anyone. They’re there to listen not just for people feeling suicidal but people like you and me…
At times I have called them and felt very supported to get through a very dark time…
I really do hope you can access some support, very very soon.
Tight hugs from Welsh girl xx
Hi Anne
I think we ‘met’ briefly on live chat last night but it can feel like a bit of a scrum at times (albeit a very friendly one!)
What you describe is how we all feel at some point or another and I don’t think those feeling every truly go away but then we are dealing with something that has a huge impact on us, psychologically, emotionally and physically. Sometimes I think the toll on our emotions is the greatest - the body just gets on and takes what it has to take.
It’s awful to live in fear and dread, imagining the worst and as you say, you need to find some way of coping. You said that you have been given a break “to see how quickly the cancer returns” but that isn’t always the case, especially as you are HER2+ and having Herceptin which can continue to work to keep things at bay. You have already had some shrinkage which is good news. Focus on that as a positive. That’s the thing about stage IV BC - you have to take the silver linings where you find them!
Set yourself small goals every day. I find the longer I stay in bed, the more exhausted I feel. Getting up and having a shower then for me, taking the dogs out is always a good start. Then if I feel tired later, I just allow myself 20 mins on the couch or sitting in the sunshine. Give yourself time to recover from the chemo - it takes a huge toll on our bodies and also takes a few months to totally leave the system.
You might find antidepressants useful. I was on and off them for years and the way they work is to make you less worried about the stuff that’s praying on your mind - sort of puts it all into the distance. Have a chat with your GP. Citalopram is a good one to start with. (Should say that I’m a mental health and general nurse and prescribe various pills and potions to people who are depressed)
You might also think about asking for a short term anti-anxiety medication like Lorazepam 0.5-1mg which you could take up to a couple of times per day. I know that things like these often get a bad press because of the way they were used long-term in the past but for short term use in anxiety, they can really help to get things under control. A short course of Zopiclone, 3.75mg can help to get your sleep back on an even keel if you’re finding it difficult to get off at night.
As Tournesal suggested, an appointment with a psychologist would be a good idea to talk things through and many oncology services have a dedicated person within their team. Talk it through with your BCN or onc to see what’s available. I too saw one in the beginning and it was really useful.
I was diagnosed stage IV after a routine scan last year aged 49 with liver, lung, bone and lymph mets. I had FEC x3, TAX x3 then Tamoxifen for 4 months. A recent scan showed I had some liver progression so I have just started on Xeloda. My MRI brain came back a couple of days ago and I now have brain mets. Any new preogression is always terrifying but what can you do? Get busy living or get busy dying (to quote the Shawshank Redemption!)
I live in the present, for the moment, often in denial but that’s what gets me up every morning. Now that the sun has come out and I hear the birds in the morning, I feel lifted and enjoy each day as much as I can. I still have dark moments when I cry, thinking about the times I will never have with my kids and it breaks my heart but then I think I am no good to them if I am a quivvering wreck in the corner and I want to have good times with them while I can.
I don’t have a faith or belief but have found the works of a Buddhist monk called Thich Nhat Hahn very useful to read. He talks about living in the present, focusing on your breathing and the here and now and I have found that this has got me through some bad times.
At the end of the day, whether we have a terminal illness or are perfectly healthy, all we have is this moment now, and how we choose to live it.
I hope you find some way to allow you to live a life that you can enjoy. Please feel free to pm me if you want to chat.
Hugs
Laurie x
Just to say Laurie, that was a really inspiring post. For Anne, hopefully but to anyone whether they are healthy or sick or somewhere inbetween…
I have read about your recent dx with brain mets (and posted hopefully!) and am even more impressed by your wonderful, wonderful attitude.
I salute you and need to reread your post every single day.
You are so inspiring! Thank you.
Do hope Anne has found this thread again and is feeling some support from reading here…
Post anytime Anne we’ll be looking out for you…
Tight hugs to Laurie and to Anne, from Welsh girl.
Laurie your a lovely brave girl so nice to read y post best wishes Ann laura
Laurie, that was very well expressed,thanks for sharing.
Anne, hope you are feeling a little less frightened and alone after chat last night and these responses to your post today.We are here for you.
Anne, Just wondered how you were today.
You too Laurie. You have new added worries with your brain mets.
I don’t think it ever goes away really. Each ache and pain and you think the worst.
I do think as time goes on you can come to accept that you have BC and mets.
The thing I have learned on the way is that I wasted so mush time thinking " Is this my last Xmas?"
You can really only try to take one day at a time but I think the initial shock takes a while to sink in.
But Laurie I have not had brian mets and I think that is what we all dread the most if we are honest.
I have come to the point of acceptance now. I am blessed that I have a good man beside me and have been able to see my 2 girls grow up. Something I never thought would happen when I was fist diagnosed in 1989. I feel content if that is not too hard to understand.
I am not religous. I do not have any wish to be elsewhere when I die. I have had the love of good parents, the love of a husband for over 40 years, and 2 beautiful daughters. And for that I am grareful. We have had hard things to bear along the way but we worked through it. We are ALL only on this earth for just a small time and we must try to make the most of each day. Not that I do all the time. Sometimes I have felt alone, scared, and fearful of the future. But right now I am okay. Hope this post doesn’t come across as odd. LOve Val
I cannot thank you all enough for your wonderful words of support especially from you Laurie as you are going through so much yourself at the moment, Your courage is truly remarkable.All of you that have replied to me have made me feel better, both your advice and just knowing there are others who know how I feel. This can be a lonely illness and even though I Have a husband and two daughters [aged 31 and 24] it’s hard for them as well and they don’t know what to say to me when I’m upset all the time.Life is short and we do need to make the most of every day and you have all given me renewed energy to try and do this.Today I got up and went out for a short while with my 18month old grandaughter - I adore her and do feel blessed to have her in my life.I felt better in the sun and although I’m still tired from weekly chemo and some left-over side effects, I’ll try to get up again tomorrow, and that’s thanks to you all. So an extra special thanks to you Laurie and to all of you.Hugs to everyone. xxx