Hi Pinzia
I'm really sorry to hear of your terminal diagnosis. I agree with you. Were I in your position, I would refuse treatments, apart from strong pain meds. In fact, without wanting to cause offence to you, or others, or open a controversial debate (but then why not), if I were in your position, I would want to say all my goodbyes and take a magic pill or potion, rather than have to be prolonged. For what? I'm afraid find this country archaic in it's attitude to euthanasia. The Swiss and Dutch make thousands from Brits, flying out and paying substantial fees, wanting to end their lives in a quick, painless, peaceful and dignified way, when I'm sure such people would prefer to be at home, or in their own country. I wish you peace Pinzia, for what time you have left, and that it be without any suffering.
If Leigh's still out there looking in - I hope you're well and you're hubby's still doing well after his brain tumour scare. I've just been recapping on one of your posts where you mention adrenaline being constantly produced when you have a diagnosis such as BC, exercise being a good way to rid it. And crying being a good to rid the build up of cortisol. I've been researching into Hypnosis, how it basically helps you retrain your own mind with depression or anxiety, the positive thoughts producing small amounts of serotonin, the "feel good" hormone. These can then be increased with just practicing such, which apparently then in turn help to dispel the adrenaline. Hypnosis doesn't dwell on the past or "causes", as standard medicine or psychi/psycho does, all of which tend to ask, "What's wrong, what are your symptoms, tell us your history". The re-iteration of which, over and over, then tends to maintain the natural body's "fright or flight" adrenaline, in the reliving, and that in turn inhibits the "feel good" serotonin production and levels.
All makes a load of sense to me. But one of my biggest problems is getting down to stuff like this, and then maintaining the treatments long enough to have effect. But if I do, i'll let you know the results.
Keep doggy walking and cycling, Blackisler2.
Hope you're all still listening to the music, Rockstarchic, Rachy, Wavey and any others of you who find it therapeutic, like myself. How's you, little fairy?
Animals do it for me too. So funny. But I was blubbing at a programme the other night, that showed a magnificent bull Elephant that had recently been shot, just for its tusks. So the human torture, needless killing side of, breaks my heart.
Loadsa love to everyone
DoolallyDelly xxxxxxxxxxxxxx
Nothing! I just get on with feeling miserable and try not to take it out on others. Why shouldn’t I feel down. I have incurable cancer. If there’s anything that depresses me, it’s the current “cheer up and put sky-diving on your bucket list” mentality. I read an in-depth interview recently with a well-known author who seemed to have a very similar condition to mine. They included her detailed agenda for “not giving in”. It included running on the spot for 30 minutes and a 30 minute walk every day. Sorry? It must just be me then - hobbling along and struggling to breathe. Even my hospice team originally mentioned the benefits of exercise in spite of the fact that previous treatment had damaged my sciatic nerve and I now rely on a walking stick. I have had to black list some acquaintances who repeatedly want to have the “have you tried this?” conversation.
What I have done, however, is come to terms with not being here. And it’s very peaceful. And actually I don’t have miserable, frightened days. Thankfully many people with cancer nowadays are either in remission or have a long-term quality of life. But for those of us not in either category, we should be allowed to manage our loved ones expectations, not give them false hope, not consent to treatments that make us feel worse and just pull the duvet over ur heads if we want to.
I Have the same, and I suspect a lot of people here do too. I went to a therapist who encouraged me to be myself, find out what I love to do and do it. In my case it’s drawing. Mindfulness also helped.its just really jolly hard sometimes. I once went to a hypnotherapist and we imagined the little you in side of you and sent her love and support. That was ok, I might try that again actually. Just get very calm and daydream that you are going into yourself to meet the real you. She’s in there somewhere! Then have a chat. Ask her what she needs, give her lots of love. Sounds mad, but it’s fun if nothing else. Good luck I know it’s really hard. ..
Hi ladies, hello delly. It is soooooooo nice to be asked after! I stopped reading the forums as I thought I needed to move on, but tonight I can’t sleep and my anxiety is HUGE. So I turned to this for friendly thoughts. And there was delly asking after me. Soooooooo nice! Thank you delly!
Am all of a wotsist because Second year scan coming up and husband has just had a brain heammorage. I thought he had flu and was just being a twat. We’d been arguing so much that I thought he was just moaning because I’d brought the wrong sort of Ribena or something. I’m such an idiot. A week later when he went to the doctors and they sent him to a and e it turned out he had had this thing and he could have dropped dead any moment. Well, he’s had an operation on brain and now, thank god he is alive and well though obviously as freaked out as we all are on here. Of course I’m relieved he is ok and I have to keep reminding myself that, but I’m soooo worried. I finally found a few hours a week in a shop, but we can hardly live off that. He doesn’t want to go back to work, he was being bullied by his boss and was really stressed which was affecting our relationship, but goodness knows what we will do for money. I’m finding it really hard to help him be positive, when I’m so scared. And of course it’s all muddled up in my head with the horrid emotions from my own chemo etc. Oh I hate being a grown up.
Sorry, I know everyone here has serious stuff to deal with. I guess this is too, just nice to see all you familiar names and new ones too. Hope everyone ok as can be xxx
Clarence, where are you? Come and speak when you get this. Let us all know how you are - good or bad. Umph
Just wanted to send a huge hug to all of yers on here. Hope it's a "what helps you feel better on more difficult days" today xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx
You all get those kisses!!!
hi ladies this is a good thread that i can really relate to! im a week off finishig rads and i know what you mean about how it can give you so many good days then your totaly overwhelmed and it feels like grief pain to me it hurts thats when its building up a bit ,i have found to not fight the emotions that come over me as it makes it worse being nice to yourself which is hard to keep up but learning to ,and just let yourself feel the emotions and know they are normal allow yourself to cry and dont feel guilty for doing it ,comfort myself by cuddling a pillow which may seem funny but it really works treat it as you ,listening to music the more you try to get it off your mind the harder it is just allow yourself to feel what you feel ,the emotional bit is the hardest i know so i send you all hugs ladies and hope you are haveing a better day little fairy xxxxxx
Hi to all you Lovies,
Hi to my dear Rachy and to you Clarence. What are you meaning "check your mastectomy scars", that you're 3 x BC were around those?? Awwww, girl, I'm so with you on depression. Yours being pre BC, my being post, but not just from the BC, loada other losses traumas since. In fact the BC, or chances of it coming back, isn't a prob to me these days. I can't do ANYthing about it if it does, so no longer worry. My depression is more life threatening in fact. I can think to do all sorts of stuff the evening/night before, but wake up to emptiness and despondency again, so often end up doing none of them. Often nothing in fact, staying in bed. Nastily debilitating. Sometimes think dealing with physical stuff is easier. Easier to treat, that is.
I've posted all sorts of things/suggestions on here, when I've been in a more "up" state. All of them fail me when I'm in a massive "downer".
However, it's still a help to come on here and read others suggestions and share struggles. So that in itself can "Make you (me) feel Better".
Keep posting Hun, even if you're feeling miz. Loadsa lovely ladies on here and elsewhere on this lovely Forum - group sympathy. Just a small lift in a day can make a diff - yeh??
Leigh - You still lookin in here? How you doin? Better I hope?
Hope ALL of you are feeling better soon.
Loadsa love, DoolallierbythedayDelly xxxxxxx
Walking, music,seeing friends ,yoga,or sometimes just pottering in the house doing some housework then resting as when Im feeling tired need to pace myself , so getting into my Pj's and getting my pillow and lazing on the settee reading a mag or watching tv can help.Being kind to myself and being patient with myself also helps xx
hello wavylocks just been reading all the tips again and see you are struggling after 18 months. I know it's daft, but thanks for writing that - I am still finding it hard 11 months after, and still feeling guilty cos I should be better by now, surely. So thank you for sharing and good tips too x
Go delly! You are a tonic and I shall think of you when I head bang my way round the living room tomorrow.
i guess we are all older and wiser, and more characterful, and it seems the most surprising people go through hells that are impossible to imagine. Go us!
Leigh - Hey, come on. You used to get the odd bad day before BC (Bas**rd. Cr*p,) SURELY??!!! BTW., I'm being teasing with you. My darlin Leigh - Keep up and on with the music, preferably with obligatory silly Delly dancin round the lounge, kitchen table, toilet!! etc.
I only said to my mental support worker, 2 days ago, "Do you know what is one of the BEST drugs for me?? Better than ANY drug, anti-depressant or tranquiliser?? MUSIC!!!!!!
I've barely watched ANY tv, the last 3-4 weeks. I've literally been sucking, eating, chewing, soaking in my most favourite healing treatment.
Just spent the whole of 5 hrs or even more, listening to Joni Mitchell cds (I have 11 in all and that's not all of her releases). I only put on her soft and lilting, sometimes soulfully jazzy tracks. Yeh, Joni Mitchell - soulful and jazzy, but with a difference. That's modern jazzy, not trad jazzy, as of her last 40yrs.
I have a direct connectionof Joni Mitchell to my brother, a fellow huge fan, (and of many other shared musical tastes and art and architecture) who sadly committed suicide 3 yrs ago. So, although I know I'm gonna get upset when I listen to certain tracks, I listen to them. And I break down and sob, wrap my own arms around myself and have a bloody good SOB. It goes on and on, sob, sob, sob - such dreadfully deep flippin PAIN - can't tell ya. Feel it the same still for my Mum and Dad. I relate certain music to all of them.
None of what I'm saying is to provoke sympathy for ME. I'm purely keeping my content to the theme of the thread.
BUT . . and this is the BIG BUT (or BUTT may be more appropriate !!) or reason I'm saying all of this, . . . . . I felt SOOOO much better after!!!! That's THE point. I'm still massively grieving. But, and I've only just realised this so it's an "also", literally as I'm typing this now. It's now only the loss of my family, NOT the loss of my breasts. Much, no MOST, no ALLLL of that, is because they're being REbuilt!!!!. Jeez, what a huge, massive difference it made to me, a still single woman at 46/47 when I lost BOTH my boobs - 2nd one? Well, you may as well have crucified me, to be perfectly honest.
Some of you will be, and are, grieving that bodily loss of yourself, be that a lumpectomy, one full breast or two, and with or without my own extra added losses.
Fact is, IT/LIFE isn't all about "light, giggly. Much of it is seriously about learning how to CARE, TREASURE, NURTURE, LOVE, GRIEVE (NO one teaches you that one!!). ALL of those have only been deepened by what I've been through in the last 10-12 yrs. I also lost my capacity to "Hate" anyONE or antTHING, I turn it around to something else. Love conquers hate, after all. It's true. So, my own philosophy for myself is :- Don't expect it to be light and gigly - then it'll so much more wonderfully surprise you and knock your flippin socks off with smiles and laughter when you sometimes least expect it to.
But you've got to keep feeding it/your self or essence, on or with your pleasing passions. Music, art, architecture, theatre and live music/concerts, lovely smells, touching textures and pleasing tastes are my "fodder" for "What helps me feel better".
I have my occasional lapses, but I'm learning, like Corinne Bailey-Rae, "To put a record on"
Here endeth . . . bloomin 'eck Delly, you do go on sometimes.
Sorry girls
Dellywellydingdong xxxxxxxxxxxxxxxxx
Thanks waveylocks! And all.
good to re read this when having a wobble. Why do we suddenly get well crap days? Trying all things, music walks..sooo hard it's bollocks. Remember MUST BE NICE TO SELF. In fact am gonna write a list of all these ideas and stick it by the kettle.
what happened to the app?!
Am good thanks Delly. Got my op date. 😊😊
Hey Leigh,
Thanks for your great posts. The bit about the four doors is really intersting and visually portrayed how many emotions and conflicts of decisions we go through at diagnosis!! Ive always found the theory of mindfulness fascinating the practise is different!! My buddhist friends feel annoyed as they say mondfulness has stolen theor practise sothout the sprituality that goes with it. Lol...
Maybe if your anxiety is because of supressed feelings the breathing technique is just a delaying one and the feelings remain, building up.....?
All I know is that breathing especially longer out then in helps interupt panic briefly but not for long when very anxious -then I need lots of gentle cuddles, somone to talk to about my feelings & some way of venting pent up emotions...then I feel better.
So I guess it depnds whats causing the anxiety.....lol.
Either way it sucks!!!!
Sending you big big hugs xxxxx
Delly!
thanks for that! I've read it just at a time when I can't follow my own advise- mindfulness seems stupid and NOTHING will help w anxiety and I'm SOOO fed up with feeling like this. Not FAIR.
a good read of some threads on here and a cuppa has helped a bit actually. Now I'll try music. Very sound advise! Led zeppelin I think, very loud because why should everyone else be happy and asleep when I'm not?! Ooh! Getting cross, maybe that's progress? Better than anxiety that's for sure. Maybe I should stay cross, will go and stub toe to see if that helps. Sooo sick of being anxious/ no future. And...breathe! And hugs to all!
Hey Leigh,
What a bloomin fantasticallyfandabidozee post!! Lurrrrvin it.
Music pretty much does it for me - is better than any antidepressant. Whatever lifts me when I'm feelin a bit low. Then whatever sooothes and winds me down slow stuff to relax my mind and body. Makes me "Mindful" also.
Hope you're all doing okay
Much love to everyone
Dellywelly xxxxx
Mindfulness. I have to share it because it has helped with anxiety enormously. If you do nothing else try focussing on breathing in through your mouth and outa through your mouth very slowly, fill up your stomach and really concentrate on the sensations- air going in, is is cooler than air going out, th sound of your breath etc. When your mind wanders gently bring it back to explore the breathing sensation again, and again.
Apparantly this works because when you are breathing slowly, your brain thinks you are not panicking and stops producing adrenaline- which it's been doing overtime since diagnoses.
Then I lie or sit several times a day and listen to a our tube video by john kabatt zinn. And just follow instructions. There's loads of videos out there, but as he ' invented' mindfulness...and what I like is it's all been done in hospitals and is medically researched so it's not just some mad hippy nonsense. Apparantly it's proven to be just as effective at helping w depression as medication.
heres the address of another other one I find very good. They are different lengths so I just listen to a 3 min. One when I am very anxious, and that calms me down enough to do more.
http://marc.ucla.edu/mindful-meditations
an app called insight timer is fun to explore too.
i hope this helps. Even if you make a cuppa try being really aware of all the sounds and feelings and sights. It's about really seeing what's happening at the moment because apparently when you think of the past you get depression and when you think of the future you get anxiety, so gently think of now.
and then sometimes you can get so that you can observe what you are thinking ( it's rankle awe inspiring how much twaddle I can think continually. No wonder I'm exhausted! ( and bored!).).
And THAT means you can be aware of, for example,' oh I'm thinking about that yellow mug which reminded me of Fred which has made me think of how I ate his last biscuit which is making me think how he'll be cross when I see him in the future which is making me anxious...but oh! I haven't actually seen him, I'm not actually in the future and I'm just making a cuppa and right here, right now there is nothing bad happening .'
Phew! Really hope that helps. It's helped me, though it's still bloody hard. Added benefit is I'm now observing my thoughts when I talk to people more, so i was able to observe, talking to my hubby, that I was getting irritated, that my voice was getting higher pitched, that I was getting hot, and instead of being swept up in feelings of irritation, I was able to observe the signs that I was getting irritated and then choose to not go there, but to take a deep breath and stay calm. Thus avoiding a massive row. Hurrah! Doing that again!
It also helped me during treatment- if you start with your feet and ' go inside yourself' and see how your feet feel, then your ankles etc etc all the way up to top of head, consciously sending each part of you love and relaxing it. It takes your mind off what's happening outside you. Can even make things relaxing!
long old post! Just found it so helpful I wanted to share! Really worth trying.
i also have quotes to look at and for me, one about, 'I'm not superwoman, but I'm kicking cancer, so I'm close'. And a friends whose is,'I'm still here, ha!'
The other thing I found incredibly useful was the explanations of what's actually happening to you that I got at Maggies. It gave me a context and a logical explanation when I didn't understand why I had these feelings and was getting more and more terrified.
It was mainly..your body has been over producing adrenaline since diagnosis. Deep breathing fools your brain into thinking it's calm so it stops producing adrenaline which gives you a rest! Excersises, however little, helps burn off the adrenaline you have produced.
In life you go through several 'doors' one is fear of death, the others fear of being alone, oh pants, chemo brain. I can look it up if anyone's interested, but basically usually you go through one door or maybe two at a time through life, but with cancer you go through all four at once so no wonder you get overwhelmed, confused etc.
And, you need to grieve for the you that was, for your life before diagnosis and the best way to do that is just to take yourself off and let yourself cry, which burns off the cortisol, another stress chemical your body has been producing in buckets since diagnosis, so that gives your body a rest too.phew!
Hurry up with the app!
hugs to everyone. This sucks actually.
Hellooooo riverside, so good to see ya - long time no speaky. Hope you're doing well??
With you on the glass o' wine or two on the list.
But I'd personally prefer a human hug at the end of a walk, or even during it. But respect your choice!! : - ))) xxx
Another thing that always helps raise my mood is creating something. It might be a new recipe for a tasty meal, a home made cake, greetings cards, knitting, embroidery, colouring a picture, painting, writing poems. Whatever floats your boat. It's well documented that creating something aids mental health.
I've been knitting little animals (OH brought home a pattern book from the library and I ended up buying a copy........ and several more!) I enjoy the satisfaction of creating cute toys and then sell them to raise money for charities. Everyone's a winner!
I also make all my own birthday and Christmas cards - using old cards and bits and pieces bought from craft stores. When I know I've got cards I need to make it feels like a chore, but I always feel better when I've made them, and people appreciate the time and effort spent on them.
Just a word of warning: start simple; being over ambitious can lead to frustration and lowering of self esteem - not very helpful!
Hi all,
A big thank you for all your continued suggestions 🙂
They are all very inspiring and it would be great to continue this thread to share with one another what makes you feel better on more difficult days.
Best wishes,
Lizzy
Not sure if you're still gathering info Lizzy for the app....but here goes!!
For me it was thinking I am on a journey -I visualised it not with an ending but seeing a road with lots of twists and turns with peaceful stops to stop off on the way to rest, recharge, recover, cool dips in pools or warm spots to sun in (all in my head) if that makes sense! When I felt really ill or low (and to be honest am still struggling back to wellness after over 18 months post treatment ) its recognising my limits. Stopping, siting quietly perhaps snuggled under a lovely soft cover, cuddling my little sweet dog, listening to music, just being. Knowing whatever was hard in this moment will too pass.
When I really struggled & positivity was fast disappearing or the discomfort becomes unbearable , distraction became the name of the game....anything that took my mind away from the pain, nausea, aches or whatever -playing crossword, patience, boggle, easy watch programmes on tele, radio plays, comedies and finally talking to someone or knowing someone is close by -not sure how you'd put that on app unless it was like used as a prompt...I'm in bad land phone......
I made a list of things that help me....and when the going was tough I looked at the list like a menu and picked one that took my fancy!! On my list was: warm drink, heated mat, snuggle my dog, games, audio book, downloaded programmes, colouring books, knitting, boiled sweet/chocolate , burning smellie candles, playing gentle relaxing music, or mad lively music to lift me and meditation CDs, walking (might not be far!) sitting in the park (down the road), ring a friend, forum buddies -we are still in contact and meet up. It's always special.
I mever did did this but you know what about jokes and laughter exercises -laughter is meant to be the biggest mood enhancer out. I once went to a laughter session -I know strange but it worked! we laughed for 40 minutes it was amazing -felt so so much better afterwards!!! Can you have laughter/fun section on your app? Maybe the theme tune of MOnty Python -or the song Always look on the bright side of life -that song ALways. Makes me laugh. Just something daft like that.
sorry gone on a bit....!!!
During treatment, I discovered that going for a short (sometimes VERY short) walk on my own, up the lane between fields - away from houses and man-made things, so I was surrounded by the things I love: birdsong, green grass, the silhouette of trees against the sky, butterflies, the rustle of leaves in the wind, kicking leaves in the autumn, young lambs in the field bluebells in the wood. All these things suddenly started to seem so special. I realised that if I focused on them and enjoyed them they improved my mood immensely. I stopped looking forward to being somewhere else, on holiday, and started to appreciate what was actually around me.
I suspect this might be what they call mindfulness. It just happened to me when I was at my most fragile, and 4 years on, whenever the demons sit on my shoulder whispering scary thoughts in my ear, I try to remember how these simple things got me through.
I also really benefited from being able to laugh at myself and my situation, with a bunch of lovely ladies who REALLY understood, on this forum, especially the madness of Benchland and the Wild Woods threads.
Relatives and friends bought me plants, books, flowers and cards and it really helped knowing that people were thinking about me. Eating dark chocolate (the 'healthy' high percentage of cocoa bean variety) made me feel heaps better without a doubt! Listening to the song "One Day at a Time" was calming. Reading a novel with a happy ending or enjoying a favourite 'soap' helped to take my mind off my illness for a while. Choosing and doing an exercise DVD that had been filmed on a beach and that was full of bright colours such as yellow and orange and that included shots of sand and sea and boats improved my mood and made me feel as though I was actually on holiday.
I usually feel "down" when I am tired/achy joints/tamoxifen induced fatigue stops me from doing what I want.
At this point, I try and just sit and watch the bird feeders in the garden, listen to the blackbirds and remind myself how lucky I am to have got through relatively unscathed.
Alternatively, find an upbeat song and have a good singalong!
Not always that simple, but thats what I try!
Hi All,
Just a quick note to say thank you very much for sharing the quotes and activities that make you feel better on more difficult days. They were all very inspiring 🙂
Best wishes,
Lizzy
I just sit quietly and think that I am still here, that things could be a lot worse and that life is for living not for missing with negative thoughts going through my mind. Good luck everyone
"Sometimes a short walk down memory lane is all it takes to appreciate where you are today."
AC
Read another one this morning that I liked:
'Each new development or symptom shakes your world in some way. While you're wobbling and trying finding your balance, let people hold you steady'.
Also remind myself to focus on the immediate pleasures of each day like a good meal, lovely pampering bath, cheerful playlist on the iPod etc.
xx
Sharon
My favourite is:
Sometimes courage isn't the voice that roars; sometimes it's the quiet voice at the end of the day that says I'll try again tomorrow.
xx
Sharon
Every time I feel down and/or have a craving I'll glance at my little poster saying "A balanced diet is chocolate in both hands" which makes me smile and most of the time forget what got me gloomy in the first place 🙂
Hi Lizzie, I was given a wall plaque with the saying:-
" Life is not about waiting for the storm to pass, it's about learning to dance in the rain"
Sue
Hi Lizzy,
Post BC treatment, my main technique for helping me through difficult days is "Mindfulness".
I'm naturally an over thinker and have a tendency to dwell on things. Living on my own, with no family or close friends for support, it is easy for me to get into a tangle with my fears and emotions. I really needed something to help me cope with the anxiety and stress of dealing with BC on my own, both during and once I had finished treatment at the hospital.
I find "Mindfulness" extremely helpful and with practice I have been able to control my fear and anxieties from getting too intense.
In a nutshell, it is adapting your mind to live in the present moment, not dwell on the past or look into things that may or may not happen in the future.
I have lots of positive quotes saved on my iPad to read when my inner peace needs rescuing. They help to remind me that any negative can be turned into a positive with the right frame of mind and determination.
Here is a short quote I particularly like which helps me to put my BC experience into perspective.
"Everyone wants happiness and no pain but you can't have a rainbow without a little rain."
Peace and Positivity,
M x
Hi Everyone
We are working on a hush hush new app to help support people after they have finished treatment for breast cancer. It would be great if you could help us with this.
We would like to know what are the things you have done or techniques you have used that have helped you over the more difficult days post treatment? Perhaps there are things you have heard others talking about and thought ‘I wish I had thought of that’!. Maybe you have a positive quote that you refer to or a list of helpful things people have said or you would have like to hear?
Thank you for your help with this project
Best wishes,
Lizzy