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Well meaning

So yesterday someone left flowers on the doorstep. No note. No text. Today someone has called to put me in touch with an organisation that plans deaths. I’m only 42. All of this has sent me crazy again.

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Hi Ellie,

I would be upset to receive anonymous flowers and a call to arrange funerals too. Who do you think would have done that? I hope you told them that they have the wrong person, as you are not planning your death or anyone else's anytime soon. How awful for you. I would only be happy with anonymous flowers if it was a wedding anniversary gift from my husband or someone else, but not from some random person. I think this was a really insensitive, unkind gesture. Unless you initiated the call requesting further information, then whoever did this was really out of order.

I am thinking of you,

Sophie x

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It’s an organisation called soul midwifes. Someone who I don’t really know called and told me about it. I thought it was a support group. I looked it up and they care for dying people. The flowers freaked me out and since I found out a previous owner of my house had cancer and chemotherapy that also didn’t work so she endured the same as me in my bedroom. This has sent me spiralling!

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Oh no! How upsetting for you, Ellie. It sounds like there was a case of crossed wires. Perhaps you can call them back and let them know there has been a mistake, as you thought it was a support group. It is not for you. You are not about to die, so this is definitely not for you. This organisation sounds like it would be more appropriate for someone who has been bereaved and is in need of support. It does not reflect your situation, as you are going to be around for many more years to come. You must have hope and believe that.

Sophie x

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Just remember everyone's story is different and your former house owners story is not yours. You are young and your body has the ability to get healthy again. We have treatments and knowledge that wasnt available years earlier. Try to be strong and remember these things although I know, as we all do, that it isnt so easy. Faith

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Thanks faith, you always have helpful words. It’s taken a while to get over. I know I really need to believe that I have years. I want to be like Sophie and truly believe a cure is around the corner. It could well be! X

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Ellie,

This is why we say people don’t get it. I would call definitely as others have suggested and tell them they made a baseless assumption and it is not for you. Don’t give it anymore energy. Call them and let it go. You need your energy.

🙏🏻🙏🏻🙏🏻♥️♥️

Love

Frances

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Oh my gosh, that’s terrible! Just wanted to say please try to not let it get you down. As we have all discussed, no one knows when we will die. In fact my oncologist was saying one day how often he has seen a partner that has accompanied the person with cancer suddenly die before the person with cancer. In a strange way this comforted me, not so much my husband though lol!!

Please hang in there, I know the struggle believe me but today you are alive, try to enjoy it. 💕💕

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I get what you are saying! My husband is 13 years older than me, so will sometimes say he will die first. We just don't know.

Sophie x

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Hi

I’ve already replied to your post about the flowers...and now this!!

What’s wrong with people out there?.. no right to impose on you...ring them up and say you’re not interested and to not contact you again...and if it makes you feel better..Chuck the flowers in the bin! I would and it should make you feel you have power over what you want to accept on your own terms

This has made me so cross no wonder you’re upset

Let it go...not wasting your energy on

Love

Barb xx

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Hi 🎀🌺 From the same week that I was diagnosed, I began to receive letters, offers of funeral services and even brochures with urn photos. I wonder: where did they get my medical information ??? This made me very bad. Happy day 💕

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Hi Maludagui,

OK, now I am speechless! That doesn't happen very often. I'm just so sorry this happened to you.

Sophie x

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That must have been awful. I’ve been having a meltdown since January. If that had happened earlier than now I think I’d have had a mega breakdown X

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That's outrageous! There's laws against disclosing medical information. I would let my health care provider know about this. Someone needs to find out for you.

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The same happens to me during my first year of my diagnosis. I would get mail about funeral services every other day and I wondered where would they get their information. Not so much now.

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i think they get info from our internet searches which should be private because I use google ALOT and often notice ads pertaining to my searches popping up shortly after my search.

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Really? I don’t know what to say...just really?

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Omg! That's just crazy! You have many years left! I would report it to your city or newspaper and try to track who would do such a horrific thing!

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It was someone I used to know who was recommending it to me!

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What an insensitive organization!

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Just to clarify it was my old landlady who called about the organisation. She had heard about me from a mutual friend X

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Oh Ellie...I'm so sorry. Totally insensitive and obviously from crazy negative busybodies who have nothing better to do. First off this is not well meaning in any sense of the word. File everything in the garbage and just don't give it any more energy or thought. Personally I find that unless you are cornered by someone then I say confront them but otherwise...ignoring it and not giving them any satisfaction is best. Silence is golden and usually drives those busybody type of people crazy. You are young and will be around for many years my friend....make it your focus to prove them wrong. Stay strong.

Sandra

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Hi Sandra, thanks for writing. I always thought I was strong but I have crumbled under this. I’ve not been the same since my last hospital stay. x2 long anaesthetics, maybe have messed with my mind or maybe I’ve had a breakdown or something because I can’t seem to get back to normal. I went to my favourite cafe today for the first time since I was diagnosed (from a fall and ending up in A&E so that was a shock out of the blue) and the owners were really pleased to see me and asked if I’d had a good winter. I was speechless. I’d taken Valium to be able to go. I just didn’t know what to say. Do you function normally and do normal things? If I’m going to be this messed in the head then my quality of life is not going to be good. You always have such positive posts X

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For starters..anaesthetics do mess up your mind

I have a friend who is a surgeon and he tells his patients not to make any major decisions for 6 weeks after a general anaesthetic..they interfere with short term memory

I had s similar thing last night..bumped into an old patient..lovely lady..she asked how was my bad back and was I enjoying my retirement ....I just lied and said I was fine..I thought if only she knew the he’ll I’ve been through (and still am)..I prefer not to divulge anything

It will get better...chin up

Barb xx

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It’s been about 8 weeks now of solid depression. Did you stop taking the Citalopram? I’m scared to take mine today. Yesterday I went crazy 30mins after taking it. I’m scared of what might happen if I just stop. Are you okay? X PS thanks for always replying to me x

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in my opinion, the only good anti-depressant is xanax. I don't take it now but I took it when I needed and it is calming as well. I never took it everyday, I only took it when I felt "off" and I didn't take the whole pill, I'd take half of a already weak dose, I think it was .025, and it would work every time. I like something that I know will make me feel better, not worse. <3

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Barb I do exactly the same thing. I have chosen only to tell 2 people and don't plan on telling even my family (they don't live close) anytime soon. It is so much easier that way. I don't want pity parties at all and most people do not understand MBC at all. They don't hear treatable but not curable, they just hear metastatic cancer and feel sorry. I don't need that. I'm not planning on dying anytime soon.

p.s. How was the opera? Hope you enjoyed.

Sandra

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Hi Ellie. I have no doubt you are a strong woman. However saying that this diagnosis is mind blowing and yes life changing so not the average stressor for any of us and it really takes an indeterminate amount of time to get over the feeling of hopelessness. If I can be honest and frank I don't think the feelings you have right now are still related to your previous anesthesias. I think you are clinically depressed and really need to see a proper psychiatrist or at least a therapist. I know you don't have a GP that you trust and I agree with nstonerocks that getting an emergent appointment rather than wait on a list for 3 weeks is in order. Self medicating and adjusting is just not what you truly need right now. If you have to get your hubby to drive you to the nearest ER department to get that accomplished then maybe that's what you need to do.

Yes I function normally and do normal things . I don't share my diagnosis so I would have just responded politely that my winter was ok and busy. Truthfully most people just ask to be polite and any answer will surfice. You will get better and your fighting instinct will return. You are still going through the shock and denial stages but just know this is treatable. You aren't going to die anytime soon and have years ahead of you to love and watch your kids grow into women. You live in one of the best countries in the world for new ongoing treatments. You can do this but I think you need some professional help right now to help you kickstart the process. Remember we are all unique and you can't design your healing based on what worked for someone else. You can do this.

Sandra

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Sandra I was going to say the exact thing to Ellie. Please see a psychologist that deals with cancer patients. You are worth it💕💕💕

Frances

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Thank you Sandra for taking time and for you good advice! I really appreciate it.

Sima

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Thank you Sima for your kind words. It's my true pleasure.

Sandra

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I hope you are taking a good antidepressant and seeing a therapist. Talking here on this forum is wonderful because we are all in this together, but it doesn’t take the place of talking to a professional. My daughter is a psychiatrist and has many young patients with breast cancer. Your insurance will cover visits with a therapist. Please don’t dwell on the morbid, dumb person who left the flowers and funeral information. Some people just don’t use their heads. I feel your pain, because after my diagnosis in November and learning about taking ibrance and having Faslodex shots in my behind, I internalized my fears, and sat on the couch in January and February feeling sorry for myself. We rent a little house in Florida where we have gone for several years and had paid for December-April. My oncologist said I needed to be here for the first 2 months to check my blood every week because ibrance is an aggressive drug and can lower my blood counts and have other side effects. The fear of the unknown got to my head and put me in a funk those 2 months. My Florida friends felt scared for me, too, and I’m sure they were thinking I must be on my deathbed. They meant well, but my husband had to take their phonecalls. At the end of the crucial two months, my oncologist said I was doing well on ibrance but was hoping I wouldn’t go away unless I could find an oncologist in Florida. Somehow just knowing I survived those 2 months without major problems, I stopped the self pity and began to perk up and like life again. Being on an antidepressant (Wellbutrin) and a little medical marijuana really helped getting over my negativity.

Sorry for going on and on. I hope you tell your oncologist how you are feeling mentally and please try to find a good therapist. Love, Margie 🥰

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Your post reminds me of my onc visit when she told me my cancer was metastatic.

My daughter and I were shocked and crying and a staff member came in to discuss a living will. I told her to get the f out of the room!

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When I was in hospital after my fall the doctors kept asking if I wasn’t to be resuscitated if anything should happen. I was only having blood transfusions etc. Then two ladies from the hospice just came and sat down to talk to me. Like you I told them to go away. It’s frightening enough with out all of that x

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Of course you want to be resuscitated. You are not dying. You are being treated. Jeeze what goes on there with hospice visiting viable patients. How horrible n

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Wasn’t = wanted

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Hey good for you

How bloody insensitive..can’t believe that

Barb xx

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I know Barb it was unbelievable!

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Some of these people are clearly in the wrong job

Barb xx

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Absolutely!

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Oh my god.....totally inappropriate. Yes I get it we all need to plan for that inevitability but certainly not at that point in time. Good for you for sending her packing.

Sandra

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How dare she do that...they just love to gossip and interfere

They need ignoring

Barb xx

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Just awful.

I agree put the floets in the bin and don’t waste any more energy on it.

Complete busybodies.

Go and cuddle up with your children and don’t

Waste one more second of your time on this.

There is a difference incurable and terminal.

You are treatable don’t forget that.

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I wish I had your strength. Unfortunately I was diagnosed at a much more advanced stage than you so I have already been very ill with this. It’s hard to believe I’m not dying after having been hospitalised already. I get better everyday which is a hard thing to get my head around because I got better for 2yrs then within 3months of the first symptom I was hospitalised. Now I’m getting better again but can’t be cured. It’s just a bit surreal. I’m glad you reminded me of that. Thank you x

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Sorry that didn’t make sense. Reminded me that I’m treatable x

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One lady said to me you have a chronic disease like diabetes. Once you get use to it you will feel better. They can treat you for many years!!!

Remember no one has any certainty in this world.

Those horrible people that left you those flowers etc don’t know how many tomorrows they have.

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You are right. I’ve worked myself up in to such a state now x

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its Not easy, trust me I know. But all the worrying in the world is not going to change anything. Live while you can( like anyone) enjoy your family. I’m off snowboarding for 2 weeks tomorrow. I’m sure I’ll be taking a few more breaks than usual but I’m still here making memories with my family.

Try to start making memories.

I write in my journal about the day I’ve had(only nice things) and take a picture. So when I do go(hopefully many years from now) my children with see the selfies I took of me taking them to football etc.

You don’t know how much time you have left with your husband and children, but neither does anyone else in this world.xx

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Throw those flowers out in the outside garbage, not in your home trash. You can either go to the source and tell them although they might have thought this was a good idea, you actually got sick over it and you won’t be planning a funeral anytime soon. Or, ignore it, try to calm down and move on. What the hell kind of organization operates like that. Soul Midwives? Creepy and inappropriate. TMQ, spend sometime on Kris Carr’s website, maybe doing one of her free meditations. She has stage 4 cancer and is so upbeat and nurturing. Can you call on a friend, go for a walk, coffee? As a newly diagnosed person I would have spun out of control myself. Something should be done about an organization that operates so insensitively. Plus, totally unrelated to your current situation. You are in treatment, not dying. You are alive, not dying. I am so pissed off for you, good thing they are not an organization operating over here. So sorry you experienced this.

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Thank you you are always so supportive. How did you finally break through the depression of the diagnosis. I remember you saying you struggled badly. I haven’t taken my 10mg Citalopram today as yesterday I took it and 30 mins later had a meltdown. It was my old lady lady that called about the organisation. X

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So let’s say she may be a well intentioned busybody who has no idea of your situation or the havoc she caused. I had a history of depression and anxiety before my diagnosis, so the diagnosis sent me to a special hell. Most of the first year was horrible. I thought of death constantly. The first 3 months being the absolute worst. One day I was so emotionally drained from the high levels of stress and anxiety, I just couldn’t sustain it anymore. I decided I was not going to die that year, so did I want to live everyday as if I were?. What would my remaining time on this planet look like? Did I want to waste another precious minute waiting to die. Really, everyone will die. The cancer just made my fears more immediate. So I found things that sustained me. You can’t do cancer 24/7 and have a life. You have to engage in other life experiences and not hide yourself away in your house. For me, planning trips, therapy, antidepressants and anxiolytics, juicing greens and this board helps. Kris Carr is an amazing inspiration for people living with incurable cancer. Buddhism. What do you love? I know your kids and husband, but is there something else just for you that sparks you and makes you feel good? It is important to look forward. How about planning an outing or vacation for your family? Or if that is too exhausting right now, what about a quick girls weekend with a beloved friend? Write down what you want to accomplish in your life and what your bucket list is and start to tick them off. I still get down. I still cry. It passes. I don’t sit on my couch wrapped up in a blanket shaking anymore. Important to get out of your house. Some days will be better than others, but it will get better. We are a work in progress. Remember you are in treatment. No one has told you that you are dying. Do everything you can to maintain a good immune system. Do things you love that bring you peace and joy. Don’t hide from the world. I am no superwoman. If I can do this, so can you. One foot in front of the other. Deep breath. Keep going.

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I lie in bed shaking x

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So did I. When is your next therapy appointment. Did you take your antidepressant? Do you have Xanax or something like it to take?

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I haven’t had therapy. Keeps getting delayed. Didn’t take the antidepressants today as was scared since yesterday’s reaction. Yes I have taken Valium. I’m really bad right now X

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Is there an adult in the house? Please let them know how u feel. If not, call someone. Then Please call your doctor right now and tell him or her that you need help right now. If you get the answering service, tell them it is an emergency. You need to get into therapy immediately and it sounds as though you need meds to help you thru this. . Please don’t be polite and “wait your turn”. . You must not underestimate how badly you feel. Sounds like you are having a panic attack. You can’t manage how you feel right now. You need the help of a professional to manage your emotional state just as much as you need the oncologist to manage your cancer. Did you have a reaction to the antidepressant? Mention that to your doctor. Please don’t suffer like this any longer. You can feel better.

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Hi again, I’m beginning to calm down, you are right, I think I’ve been panicking all day. My husband is here. Difficult being like this with kids in the house as I have to hide upstairs. I know I need help. I live in a very rural place so not many support services. I keep thinking I’ll wake up one day and be okay X

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Please let your husband know what you’re feeling. If you can’t call your doctor, he can

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TMQ in the end you have to fight for your health and your sanity. Being stoic won’t help. It won’t just blow over without help. Sometimes things are just bigger than we are.

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What antidepressants are you on? If you don’t mind me asking x

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Right now Elavil. It’s an old one. Works for me. I’ve been on a few. Everyone is different. Sometimes have to try a few. Like doctors. So sorry you’re doctor is useless. Can u get to a bigger city for your care?

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Not really. I’ll look that up x

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Does it help you sleep? X

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Not really. There are other meds for that if needed. I use Xanax a few times a month or less

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Me too Valium and sleeping pills and CBD! Gosh I feel like a druggy!

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Sometimes a person needs chemical help. This is an extreme circumstance.

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He knows. My doctor is useless. Waiting for a new onc as changing hospitals. Hopefully I’ll get a good one. I’m hoping I just come out of this like you did x

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I’m a work in progress not a done deal. Is there a mental health clinic or hospital with a psych component near where u live?

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I’m on the waiting list. Should be 3 weeks x

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What do I do in an emergency? I don’t think you should wait 3 weeks for therapy.

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I know. I was diagnosed in November. I’ve had support from several nurses and talked to lots of people and been on here. No one professional. Hopefully it will help x

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It will. Hang in there. I’m sure you are in no worse shape than I was.

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Thank you x

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💕🌈

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Thank you for chatting your words are helping x

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I’ve just googled soul midwives out of curiosity...couldn’t even read it...depressing stuff to say the least

Don’t even go there ladies

Barb xx

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I know, can you imagine my shock this morning?

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Barb did you see my question about the Citalopram? Did you just stop and we’re you okay? X

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Hi there

Saw my GP Monday and told her I don’t want to take them..I’d already been cutting them in half for a few days anyway..tricky cos they’re tiny..anyway she said to just stop them..was only on 10 mg...feel ok..in fact loads better..even went shopping for jeans..bought a few bits...not felt like doing that for a long time..I look a bit better..more colour in my face..that could be the iron infusion from last week starting to work

Barb XX

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Thanks for replying. Did you cut them with a knife? They’re really hard! I tried snapping it but couldn’t. I thought maybe I’d do every other day for a few days then stop. Although I think they make me go crazy almost as soon as I take them. So glad you are feeling better. It’s been really helpful to know you were going through the same experience X

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Hi

Yes with bread knife!!.. did bite one in half as well..as long as it’s a reduced dose

Go for it....let me know how you get on

Barb XX

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Did you find you reacted straight after taking them? I can’t tell if I’m imagining it! X

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Omg the very first one I took I felt nauseous and really peculiar..it progressively got better as weeks went by but not totally

Glad I’m off them

You’re not imagining it

Barb xx

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Why don’t you get a pill cutter at the pharmacy?

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I know!!...stupid of me

Anyway I’ve stopped them now

Barb xx

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You poor thing! I can understand how this has sent you spiraling again. Like many said, don’t waste your energy on it. I agree with Barb. dump the flowers and let the wacko know you are not going anywhere!! Smdh! I just cannot understand people. Sending you positive vibes and prayers! Xoxo

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Thank you x

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These soul midwives ought to run their schtick by a psychologist and get some serious pointers On their misbegotten outreach program.

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It’s just too much isn’t it? Maybe offer it to an actual dying person. I’m so scared now as I hadn’t really opened that door. People on here don’t really talk about it. Which is why it’s bettr than the Facebook group. X

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That is, without a doubt, one of the worst things I've ever heard. What's wrong with those people? What a horrible, horrible thing to do! If you can contact, tell them you have no damn plans to die anytime soon and to leave you alone. I saw from another response from you that it was an old landlady that contacted the organization. Call her too and tell her the same thing. How awful....

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I am in absolute shock right now. Throw those damn flowers away. How dare your landlady, who does she think she is. It's none of her business. If this happened to me I would be on the phone to her and give her a strong peice of my mind. Then I would call Soul Midwives and do the same. I just looked up their website, who is this Felicity Warner, I couldn't find any credentials. I find it strange that they would send flowers without speaking with you or your husband first. So anyone can just call and they respond, absolutely ridiculous.

I am so sorry you are having such a hard time, I wish I could just give you a huge hug. I am one year out from my diagnosis, I really had a hard time dealing with all of this. Only recently have I decided to ditch the doom and gloom thoughts and move forward with the positive. I was really upsetting my gentleman friend and didn't even realize it. We have everything to look forward too. I just told my granddaughters about this new diagnosis and explained that it's like a chronic illness, I will always be in treatment and that I am not going anywhere soon.

Please try to find help, this stress is not good.

You will be in my thoughts and prayers for peace and strength. Again I can't thank all of you wonderful ladies. You all have been a God send to me. I feel that since I found this site you have made my life so much better.

Hugs,

Robin❤

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Please try to disregard this-how cruel! and for sure it’s a stupid person that doesn’t realize it the flowers and try to think of it you have a lot of time ahead of you. Yes it would bother me because obviously it’s someone you know who did this. Enjoy the flowers and think positive-don’t let anyone get you down. If it was me I would try to find out who sent the flowers and anything else to know the identity. Simply because they are toxic and need not to be in your life. Good luck and God bless you❤️

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That was a horrible thing to happen, flowers and then funeral arrangement info, must have been a mix-up. I pray that you have a very long life and a cancer cure is just around the corner! what a great time to be alive! <3 God bless you and heal us all in Jesus name, amen! Remember, when your doorbell rings and it's the stinkin' devil, just say, dear Jesus, could you get that please? My pastor said that one Sunday and I thought it was great!

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I love that response from your pastor. Going to keep that in mind.

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WOW! Not sure the two events are connected but the organization that called should be put out of business! Absolutely pathetic! So sorry for your stress and so glad you reached out! Bless you!! 🙏🏻❤️🙏🏻

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That would do the same to me. When I first was diagnosed with BC many years ago someone came to the door and wanted to give me information about cremations!! Coincidence? I don't know but I burst out in tears because of my situation and they actually sent me an apology note. Now being diagnosed again, I get stuff in the mail about cremations and such. Is this another coincidence or do they somehow have access to information. I guess its a business to them but I am sorry it is insensitive and who says I am going to die. People think they mean well but they have no idea the effect it can have on us. I know its easier said than done but try to just let it go.

Hang in there,

Kim

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Hi Kim,

What a terrible thing to go through. I'm so sorry this happened to you. I don't think it was a coincidence. I'm sure that our information is out there and then we get targeted by businesses that want to cash in on our situation. I mean, how else would this person come to your door talking about cremation? I've not had anything like that happen to me, but I wouldn't be surprised if it did in future. If I were you, I would contact these companies and tell them you are very much alive thank you very much and to take you off their mailing lists!

Sophie ❤

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Thanks Sophie and next time I think I will. People just don't get it. During my first round of BC I had chemo and lost my hair so was wearing a bandana when I went into the post office to buy some stamps. I decided to buy the breast cancer stamp and the woman helping me asked if I had breast cancer and I said yes and she said "oh so did my friend but she died". Seriously, just how stupid are people. I can laugh at the absurdity of it now but then it wasn't funny at all. I have learned that people sometimes don't know what to say so they something thoughtless without thinking. I just have to let it go or sometimes I feel it has to be addressed. Sheesh!!

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You're welcome, Kim. I know what you mean about people not getting it. They try to say something sympathetic, but it comes out wrong. We are alive! But sometimes we are being treated like we have one foot in the grave!

I can't believe that lady said that to you! Actually, yes I can because I've had the same thing happen to me. A dear friend lost her daughter to leukaemia when she was 18 (I was the same age as her daughter) and she will often talk about her daughter's cancer experience. As much as I remember her and respect her memory, I don't want to be compared to her or to be reminded that she died and I am still alive. She told me once how fortunate I am compared to her daughter! She hasn't said anything lately, but I honestly don't have the heart to tell her I don't want to talk about her daughter whenever she brings up the subject. It makes me feel selfish even thinking this way. But what people fail to realise is that we are forced to stare death in the face with this diagnosis. Thankfully, over time, it gets better (well, it has done for me). I don't want to hear about people who died, but those who are living and thriving with cancer.

Sophie ❤

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Well said Sophie

Barb xx

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Thank you, Barb!

Sophie x

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Amen to that Sophie. Let's focus on thriving!! Have a good weekend.

Kim

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Wow!!! Crazy and offensive!!

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that is so frustrating. I had someone send me an unanimous letter telling me that they were my friend but was questioning my decisions on my treatments. Seriously, if you are my friend why not talk to me face to face??

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