How do I be brave in the face of terminal illness?

LegacyUser

Hi,

I'm 31 years old and the the beginning of May, I was diagnosed with metastatic breast cancer. As many will know, this is an eventual death sentence, even if I receive treatment.

I was distraught for the first month or so. I'd say I've slightly calmed down since but only slightly. I can't seem to get past grieving for the life I will lose. I am so terrified of death, of the nothingness. But at the same time, now that I know this will kill me, I don't really want to prolong things. The goodness as gone out of life. Especially as I am so tired and my mobility isn't what it was. I want my BF to be able to move on, I want myself and my family out of this limbo, but I don't want to not be here, I can't imagine it.

Being on Facebook brings mixed emotions. Communicating with friends is good but it is so hard to see people go on with their lives. The carefree me is gone, I am not the person I was two months ago.

I have been through the "why me?" and "why did I not check that out sooner?" battles in my head and I am mostly over those. I just feel bereft. So sad, such a well of sadness inside me. I cannot believe this has happened, I cannot believe I won't meet any nephews and nieces that come along, I can't believe I will have to say goodbye to my beloved family and boyfriend in the not too distant future. I just can't believe this is happening and when I think about it, I panic so much. I feel trapped. A lot of my dreams involve me trying to avoid a dark pit or feeling cornered.

On top of this, I am terrified of how the illness will play out, as I know it won't be easy. I don't want be thought of as a wasted husk, a shadow of who I once was, the woman I miss who had so much energy, the woman who attracted my boyfriend.

I can't imagine not experiencing things, not having my curiosity sated, never again meeting new cats and dogs and other animals, not seeing new and exciting comedies. I can't bear the pain this will cause my family and friends. I can't seem to get to any level of acceptance, though 8 weeks has passed. It hangs over me, like a black sheet.

I'm so scared and sad and I'm not even sure what I'm here for, maybe some kind words or experiences of people who have had young loved ones pass away.

HelgaWard

So sorry to hear about your diagnosis. I have not been in a similar situation, so I can't offer you much advice I am afraid. Reading your post, all the feelings you are experiencing seem exactly how anyone would be feeling in your situation. There is no right way to do this. I'd imagine there are a whole range of emotional stages you will go through, you are grieving for your life before your diagnosis. Disbelief, anger and eventually acceptance of some sort.

Have you heard of Kris Hallenga, she is an English identical twin, who has had stage 4 breast cancer for many many years. She started a charity called CoppaFeel to encourage young people to do breast checks. I saw a very interesting documentary about her, it might be good for you to watch. She was diagnosed with breast cancer at 23 and she is 29/30 now. Basically although she is suffering with stage four cancer, she is still living.

Sorry you are going through this, big hugs, let the people in your life love you and help you, don't push them away.x.

LegacyUser

My heart goes out to you.
Any of us reading your sad post will be afraid of saying the wrong thing or coming across as pitying.
Firstly, cancer sucks- you've been dealt a shîtty hand and it's awful.

You talk about acceptance?
Yeah, it can be slow to come.Have you met your local Palliative care team yet, they will help you and support you in every way possible.

I've worked in palliative care for years now- I hope what I say won't come across as Cold or heartless .I recently heard of a young woman who organised a party to celebrate her life with her family and friends- she knew she didn't have time on her side but wanted to acknowledge the great years she'd had while she still could.

All of us reading your post today, every single one of us- might not have tomorrow - yet we sometimes take today for granted.We shouldn't - today is to be enjoyed, every single minute.

You talk about your tiredness and limiting mobility - maybe ask your friends to come to you?
Expect them to find it difficult to know what to say and do. They're shocked and also in denial.

Lots of hugs to you- embrace this time- it's precious - it will be a rollercoaster of emotions, accept that this is okay- there is no "right" way for you to be-only your way.
Sorry for being so longwinded.

nikkibikki

So sorry to read about your diagnosis OP. What you are feeling I would say is perfectly normal. I don't really have much advice to offer. There is a Long Term Illness forum here on boards so you might get some more advice there. Or there's the Irish Cancer Society are absolutely fantastic. I've had 2 breast scares myself and they were brilliant when I rang them. I really hope this disease is treatable for you and that you get a fantastic prognosis.

Good luck with it all. Don't bottle up these feelings.

LegacyUser

nikkibikki wrote: »

I really hope this disease is treatable for you and that you get a fantastic prognosis.

Sadly, at my stage this isn't possible. The women who die of breast cancer every year? This is the stage that kills them.

LegacyUser

Apologies, meant to thank everyone who replied so far in my last post.

Will type a reply up when I read some more responses, the posts are emotional to type so I don't have the energy to reply to each individually.

CaraMay

I'm sorry to hear about your diagnosis op.

What do you like to do now? Can you travel a bit? Take nice lunches with friends etc

After watching the really daft movie ps I love you, I always thought I would like to leave a video message behind me and letters / birthday cards for my loved ones.

Keep coming back here when you need to rant. People may not know what to say but we can listen.

mud

Your post has touched me and I found it hard to reply but here it is. You seem to be very realistic regarding the situation and I admire you a lot for that. You will have to say goodbye to everyone too soon. Between this and then, is there anything you'd like to do? A trip or a party or renting a house by the sea? Do you want to document the time you have left so that you will always be there in some way for your family and friends? Or do you want to do nothing out of the ordinary and just continue as you please? Do you want to organise your funeral?

As for being brave in the face of it all, is this for yourself or for others? You don't have to be brave all the time. It's scary and awful and you don't need to be a hero. It's a damn shame and it's totally ok to feel hard done by.

As someone who has lost a few family members to death I will say that the sudden death was worse than the slow one. The absolute only upside to stage 4 is that you know it is bad and that for you there won't be a miraculous cure so you get to dictate the time you have left. You can sort out your palliative care and see the people you want to see. You can leave them in no doubt that you love them. They will have the opportunity to leave you in no doubt of their love for you.

I hope you are doing alright.

Oryx

I have no idea what it is like to face a death sentence like yours. For most of us, death is a far off thing that we never really have to acknowledge. It happens to other people. You are faced with it, cold and hard, here and now, and that is a very lonely and isolated place to be. Noone but you has to face this or deal with it. Of course I feel for you, and my heart goes out to you, but I cannot possibly understand, and for that I apologise. Any advice I offer is given with the full knowledge that I cannot know what you really need to hear.

I can though, give the perspective of those who love you. They want to help you, and to be with you, even if with some, that help may be clumsy and they wont know what to do or say. Some people may avoid you because of this, but cherish the ones who dont. You have the freedom to be exactly who you are with them, dont hide that. What have you got to loose? Say whatever you want to say, try not to leave things unsaid. It will be a gift you give to those you leave behind.

I know you dont want to give up the person you are now. You don't want to be known and remembered as sick, or weak. But if, say, your boyfriend is ok with that, believe him. Accept it if he says he is ok with it. There's more than one way to love someone.

From reading your words, a lot of your pain is based on missing the future. All the things you wont get to do. A coping strategy might be not to let your mind go there. Get up today, and deal with today. Experience today's weather, a good coffee, hugs. Do it again tomorrow for as many tomorrows as you get. Don't go further than that in your head, as it is just torturing yourself. Or if it works for you, plan for future events that you may miss. Write letters that will be received after your day. Gifts for birthdays, and Christmas, for those around you. Maybe it will help, planning nice things for others? I have a friend, a wonderful lady, whose (big generous) damaged heart may give up at any time. She is always planning the next big celebration, in case she is gone by the time it comes around. Right now, I expect her Christmas 2015 is all sorted with presents wrapped.

I think too that all those make a wish charities have the right idea. They get you to experience bucket list things you wouldnt otherwise do. Im not saying you need to parachute jump, but you say youll miss animals. Now is your time to get a new cat, ride a horse, go to the zoo. Do stuff you want to. Dont wait. We all wait for the right time, and most of us miss the best stuff cos its always left till tomorrow. Well your time is precious, dont wait, do things, even little things, that make you happy.

And 8 weeks is not a long time to come to terms with this, but you seem to have come a long way in that time. Your post has really made me think, and realise how much I take for granted. I wish there was something I could do for you apart from type, but even if these words are a bit lame to you, I hope you know the sentiment behind them was not.

LegacyUser

Hi tarpatrice
Firstly I'm so sorry that you have to face this at your young age but unfortunately more and more woman in their twenties and thirties are being diagnosed with this terrible disease. One of my best friends in her early thirties passed away earlier this year to beast cancer and we all miss her so much. Looking back at when she was first diagnosed that the cancer had returned and spread she was instantly put on a rollercoaster ride of extreme highs and lows. She was introduced to reiki by a friend and I know it is not for everyone but the difference it made to my beautiful friend was outstanding. She became so much calmer and was not as she put it juSt waiting to die anymore. She learned through meditation how to calm her mind when the fear began to creep in. Her faith grew stronger each day and she began to accept the path that has been laid out for her and to enjoy the time she had left with her family and friends. We all had so many unforgettable chats with laughter and sometimes tears. I'm not overly religious but by being around my friend I am so grateful to all her reiki friends and prayer groups for helpingher deal with her situation. I guess what I'm trying to say it is ok to be angry upset amd sad but please don't let that overtake the time you have left. Speak to whoever you have to in order to let your fears and anger out don't bottle it up and try to be brave for everyone else. As my wise friend would say why spend the little time I have left worrying about the time that I won't have sure that's just a waste altogether. Sending you love and keeping you on my prayers

Sound Bite

Hi Op,

I know a few cancer patients who received support at the Inis Aoibhinn facility in Galway which is ran by Cancer Care West.

I understand they do meetings do a lot of support services re dealing with the diagnosis. From what I've heard, people gain strength from the sessions by talking to others in the same situation. It might be worth contacting them, even if they are not in your area they may be able to suggest a similar service closer to you.

Mr. Incognito

Well that sucks.

You have two options. Sulk and die or smile and die. Which do you want to be remembered for. I dont want that to sound harsh or insensitive, its just blunt advice.

My dad was diagnosed with prostate cancer and had no hope. Docs gave him three months. He told no one. I have no idea how he did that. He died suddenly at Christmas. Everyone takes these things differently.

I have no idea what you are going through, you are face to face with your mortality. All of us will die. Instead of living you are brooding, grieving, thinking negatively. That wont heal you and wont improve your last weeks. What ifs are irrelevant.

Life is attitude. And you can choose that attitude.

Being angry is okay, and sad, and noble, and brave and thinking of others. Being afraid is okay too.

But we all die alone in the end. Its how we face it that matters. Up to you to choose.

Cosmic hugs

CailinGaillimh

Hi OP,

Unfortunately; I've lost a friend of the same age to you to the same horrific illness.

I just wanted to drop in though and let you know that no one expects you to be brave at all, let alone during the scary parts. Accepting this must be terrible, and I'm truly at a loss as to what to say to you. Someone mentioned a friend having a party to celebrate the great years that they've had - my friend did the same, a "F**K YOU CANCER" party if you will.

Your team should have numbers and contacts of people/support groups/classes. Even taking some of these - our local centre have pilates- could give you the headspace you require to just sink in!

Keep strong & keep fighting X

LegacyUser

Well, I've got to a stage where I'm cheery and "normal" around people. I can only handle one or two people are a time though and haven't seen any friends since my diagnosis, it will make me too sad at present. But to the people I am around, I am putting up a decent front.

I have a good cry every day but only when I'm alone. My boyfriend's work was badly affected in the first few weeks after the diagnosis and I don't want it put in jeopardy so am keenly aware not to make him depressed. How he is coping is knowing what's inevitable but applying a thin layer of denial so that he can live his life. That's fine with me, whatever way he finds to cope is good.

In a way, I think it will worse for those I leave behind than for me. I mean, I'll be gone. They'll have to deal with something that they never thought they'd have to deal with.

I wonder if I should try and push the inevitable to the back of my mind too until the time grows nearer, just so that I can continue to have experiences and enjoy time with my loved ones?

Semele

Try to find out what your options are for counselling- hospices often offer counselling to patients and their families. I used to work in a cancer centre in the NHS and counselling was a godsend for some people, a place where they could talk openly about all the negative emotions that they didn't want to burden loved ones with/feel that loved ones could help with.

Also, there is a facebook group for young women with breast cancer that is a wonderfully supportive community- the following is copied from a forum post and has the link. I've met some women who were very active in the group and it sounds like a very helpful resource. All the best.xx

"Hi,

I'm just bumping up this post about our Facebook network for younger women diagnosed with breast cancer. We are coming up to a year old now! Basically, if you haven't already come across us, we are a user led group n Facebook where we have all received a breast cancer diagnosis at a young age (under the national screening age of 47) and we chat and support each other. We've about 600 members across our different groups, which include a main hub group, a moving on group for after active treatment, a group for those with recurrences and secondaries, a group for pregnant women or being diagnosed within a year of pregnancy, and a group where we chat about research etc so that you have to 'opt into' that kind of chatter rather than stumbling across it accidentally and scaring the bejeezus out of ourselves!

We have just had another YBCN baby born, a little girl this time. We've quite a few members who are, or have been, pregnant during diagnosis and treatment. We've also extended our remit to include young women in Ireland too, and those with strong links to the UK (eg. Diagnosed when studying abroad).

We've a close knit group of secondaries ladies, who have just had their first big YBCN meet up in Birmongham this weekend. The good thing about being on a facebook format is that we get to see the photos!

Here is the link if you want to join https://www.facebook.com/ManchesterYoungerWomensBreastCancerNetwork?bookmark_t=page. And even if you don't fancy joining, or don't fit the criteria for whatever reason, we'd love you to 'like' our public page , and come and have a read of our status updates because they are pretty good, if I say so myself!

Thanks

Vickie"

retro:electro

Op I just wanted to take the time to say your post really touched me and to wish you the best. I can't stress enough how important perspective will be for you in the coming months. It's really all about how you see things. The things you fear about dying, well we all fear them, we are all going to die eventually, nobody is invincible. Death is certain for all of us. The only thing different for you is you know what is going to take you, the rest of us don't. I was recently faced with something similar and in order to stop myself going crazy I have to almost trick myself into thinking differently. I could walk out in front of a car tomorrow and be killed instantly, nobody knows what faces them, so we must make the most of the time we have here and not worry about what may happen tomorrow or the day after that.

I'm sorry if I'm not making much sense, but as soon as you find your mind wandering to those dark places, try and change how you are perceiving things. There will always be things you wish you could have done, places you could have seen and experiences you could have felt. Instead try and focus on the now, what you have here in front of you, your boyfriend and your family. They are what is important. Don't spend the rest of your time dreading what's coming, none of us know what is ahead of us, nobody. Please just try and find peace somewhere and somehow, as hard as that may be. I'm so sorry for what you're going through, I wish you all the best x

Pretty fast

TarPatrice wrote: »

Hi,

I'm 31 years old and the the beginning of May, I was diagnosed with metastatic breast cancer. As many will know, this is an eventual death sentence, even if I receive treatment.

I was distraught for the first month or so. I'd say I've slightly calmed down since but only slightly. I can't seem to get past grieving for the life I will lose. I am so terrified of death, of the nothingness. But at the same time, now that I know this will kill me, I don't really want to prolong things. The goodness as gone out of life. Especially as I am so tired and my mobility isn't what it was. I want my BF to be able to move on, I want myself and my family out of this limbo, but I don't want to not be here, I can't imagine it.

Being on Facebook brings mixed emotions. Communicating with friends is good but it is so hard to see people go on with their lives. The carefree me is gone, I am not the person I was two months ago.

I have been through the "why me?" and "why did I not check that out sooner?" battles in my head and I am mostly over those. I just feel bereft. So sad, such a well of sadness inside me. I cannot believe this has happened, I cannot believe I won't meet any nephews and nieces that come along, I can't believe I will have to say goodbye to my beloved family and boyfriend in the not too distant future. I just can't believe this is happening and when I think about it, I panic so much. I feel trapped. A lot of my dreams involve me trying to avoid a dark pit or feeling cornered.

On top of this, I am terrified of how the illness will play out, as I know it won't be easy. I don't want be thought of as a wasted husk, a shadow of who I once was, the woman I miss who had so much energy, the woman who attracted my boyfriend.

I can't imagine not experiencing things, not having my curiosity sated, never again meeting new cats and dogs and other animals, not seeing new and exciting comedies. I can't bear the pain this will cause my family and friends. I can't seem to get to any level of acceptance, though 8 weeks has passed. It hangs over me, like a black sheet.

I'm so scared and sad and I'm not even sure what I'm here for, maybe some kind words or experiences of people who have had young loved ones pass away.

You precious precious girl the tears are streaming down my face. I can't say anything to you. Have faith you precious girl.

Eeden

My thoughts are with you, but it's hard to know what to say. You have a difficult time ahead; some of it will be precious, if poignant, and of course you are thinking about your loved ones and what they're going through. They are thinking of you, too, and what you're going through. But it must be scary.

Just be good to yourself. It's so unfair. I wish you the best. The very best.

NIMAN

OP, your post really has touched me more than any other I have read in this forum since I started reading it a few years ago.

Not sure what it is, maybe your age and the fact that you speak so openly and honestly about it. I cannot even start to imagine what I would do if I received news like yours, probably crumble into a heap until my time was up, don't think I would find the strength you have.

Of course there is nothing anyone can say that will make this better for you. You are facing the end of your life a lot quicker than you ever imagined. As some have said, we are all going some day, some soon, others in many years. But none of us know for sure when that final day will come. I might die tomorrow or next week. No-one knows.

I suppose its all about finding peace with yourself, telling those important to you want you think of them and how much you love them. At least this is one thing you have control over, which the illness cannot take from you. I lost my father to a massive heart attack at home, he more or less died in my arms. For a long time after he went, I often cursed myself for not telling him how much he meant to me and how much I loved him, but when you lose someone suddenly you never expect you will have to, you never expect them to leave in that fashion. But you can make sure you speak to everyone and tell them what exactly you want them to hear. No guessing, wishing, unknowns.

I lost my aunt at 32 to cancer too, many years ago. She left 3 children under 7yrs old. I guess from your post you don't have kids? She left such a large hole when she died, but she is still talked about to this day, 33 yrs later. Her face still smiles back at her family from many pictures hanging in her house, so although she is gone she is still always there. As long as people think of you, you will always be around. Some of us are important people and will be famous when we die, others will only be remembered by their families, but they are still remembered. Perhaps do something to create a legacy of some description? What I don't know exactly. Maybe even consider becoming a donor, I know my mum always took solace in that when her brother, my uncle, died of a brain haemorrhage, and often told us that there was now 5 people given the gift of a quality life due to him passing.

Not sure if you are religious or not. If you are, then you might find some comfort in an afterlife, knowing that you will find out what this is all about and being able to look down on your family for years to come. If you're atheist, you might find some comfort in the fact that maybe we are all part of the energy of this unexplainable cosmos and we all return to it some day, perhaps to form further life?

Maybe you might consider leaving taped video or audio message for your family, nephews, nieces etc, for them to play at certain points in their lives? Weddings, graduations, 40th birthdays etc? We have so much technology avaialble now that there can be forever images and sounds of you left behind should you desire.

Perhaps write letters to your family and friends for them to read after you pass? It would mean so much to them to have such items.

Thinking back to what someone said about having a party, thats something I always said I would love at my funeral. I would hate it to be like so many of the funerals I have been at. I would insist everyone dress in really bright clothes, none of this black nonsense. Have uplifting songs, have people smiling, laughing, making as much noise as they wanted. Even have a party early so you can get drunk too! (hope this doesn't sound crass).

Anyway, outside of that I don't have much else to add. I really do feel so much for you. I am not really the praying kind, but you will remain in my thoughts for a very long time, thats how much this thread has hit me. I'm emotional typign this. You are too young to leave this place, but who knows why we do and where we go.

But your remaining time is exactly that, yours. Do as you see fit. If you want to spend a day crying, then cry. If you want to spend a day walking on your own, do that too. But make the most of what time you have left with your family, they will miss you when you're gone, give them plenty more memories. And re: friends, bear in mind it might be hard for some of them to face you or visit you. I know I wouldn't know what to say, so they might find it awkward. Try to put them at ease.

I can only wish you all the best for your remaining time, I hope you get every last minute you can out of it and are in the company of those you want to be with when your time comes.

Take care.

LegacyUser

OP, like many others, I can't really appreciate what you are facing. But I have lost some family members and others to cancer. I don't think you should get too hung up on the fact that it's "still" hanging over you after 8 weeks. Of course it is, how could it not be? Please don't be hard on yourself, you cannot expect to have dealt with this in 8 weeks. I don't actually think it's a case of "dealing" with it, I think it's a case of finding a way to cope. The best I can say is to try and take each day as it comes, and not focus too much on the weeks ahead. There is nothing wrong with having bad days, but I guess the aim is to make sure that they don't make up every day that's left for you - that you enjoy your time too.

It's human nature to be terrified of the unknown, and death is the greatest unknown of all. Personally, I think that's why we have religion....it's man's way of trying to cope with this unknown that we can't control and have no information about.

I can only tell you that, from what I've seen, time has an effect on people in your situation.As the time passes, something changes and people seem to become more accepting, better able to cope and more at peace with the inevitable. It really doesn't happen overnight though. Please see if there is a hospice near you, even just for you to walk in the door and talk to someone. They have excellent counselling services and facilities, and will also support your boyfriend and family. You can't go through this alone, none of you can, and you and they will need the help. I don't know if you are religious, but if you are, try to take comfort in it - I know many people have spoken with religious people at times like this and drawn comfort from it. For all that people may sneer at religion, there is a hope and deep peace to be gotten from those who have really deep faith and it can be very comforting. If you are not religious, then try and spend time in nature and spend time talking to people who can help you find ways to get through this somehow.

As many others have said, tell people what they mean to you. I'd echo the idea of making little videos, writing messages, taking some photos. They will look back for years to come at them, it will mean so much.

It completely sucks and many tears will be shed (I'm shedding some as I write). But I wish you the best you can get from the time ahead, and I hope that you find some peace in all of this.

Rubberchikken

i'm really sorry you're facing this. i can say nothing that will help but i will wish you the very best in the future and the strength to deal with it.

LegacyUser

Thanks everyone, it's nice that people are so touched, I wasn't really expecting that, I was vomiting my thoughts onto the keyboard!

I'm both receiving prolonging treatment and palliative treatment at the moment. I think it's really important to link in early with palliative, however depressing it might be. I think a lot of people in my position are in denial about that and then get the death they never would have wanted. I'm iffy on the prolonging treatment but am doing it for my loved ones who want me around longer. I won't do it indefinitely though.

When I step back and look at what I just typed, I can't really believe it. A couple of years ago, I was a vibrant, energetic late 20-something. How things have changed. I can't quite grasp it. We are all struggling with believing it, as I am relatively ok-ish at the moment. It is bizarre.

I think death doesn't scare because I'll not be aware, but dying does, and the fact that I won't be experiencing things and causing pain to my loved ones. It really annoys me that I won't witness my own funeral, I'm such a curious sod. (A non-religious, you might have guessed)

mud

TarPatrice wrote: »

Thanks everyone, it's nice that people are so touched, I wasn't really expecting that, I was vomiting my thoughts onto the keyboard!

I'm both receiving prolonging treatment and palliative treatment at the moment. I think it's really important to link in early with palliative, however depressing it might be. I think a lot of people in my position are in denial about that and then get the death they never would have wanted. I'm iffy on the prolonging treatment but am doing it for my loved ones who want me around longer. I won't do it indefinitely though.

When I step back and look at what I just typed, I can't really believe it. A couple of years ago, I was a vibrant, energetic late 20-something. How things have changed. I can't quite grasp it. We are all struggling with believing it, as I am relatively ok-ish at the moment. It is bizarre.

I think death doesn't scare because I'll not be aware, but dying does, and the fact that I won't be experiencing things and causing pain to my loved ones. It really annoys me that I won't witness my own funeral, I'm such a curious sod. (A non-religious, you might have guessed)

My mam always says she'd love to see who comes to her funeral I never understood when I was younger but I'm starting to see the picture now.

There's a facebook page I use called Grief beyond belief. I find it helpful.

https://www.facebook.com/faithfreegriefsupport?fref=ts

You are great to keep struggling for your loved one's sake but please don't be afraid to say when it gets too much.

All the very best.

LegacyUser

Oh, and no, no children, to answer an earlier question. And I am very glad of that, both because it would be tough to juggle kids (don't know how other cancer sufferers do it) and the idea of leaving them behind must be unbearable.

CaraMay

You are gas op I know what you mean about the leaving people behind part. My child has special needs and I'm now so scared of dying because I'm so worried for their future when I'm gone. The only thing I can do is try to prepare them as much as possible so they can manage when the time comes.

You are clever. You'll find a way to help your loved ones too. Some people may think it's you who needs to be looked after (which is true as well) but maybe it will help you to cope with it all if you can get all your ducks in a row too.

cactusgal

Op, I just wanted to say that your post really touched me. I'm so sorry for your pain and fear. You already sound unbelievably brave to me. Is there any special place you'd like to visit, or any particular experience you'd like to have while you still can? Perhaps planning something like that would provide a new focus, even if temporarily?
Sorry if that is a silly idea, I know you said you've not great mobility, just wanted to try to give some advice.
Take care, OP xxx

LegacyUser

My phone packed it in tonight which caused emotions to bubble over and panic to set in. On a practical level, I'm broke, but also it, well, brought up thoughts of "When will I be packing it in? Why get an expensive phone anyway when I might not be around much longer?" It's weird, I'm looking at bottles of shampoo and condiments, thinking "Will that outlive me?"

Not good. I'm not really coping right now but I feel such a pressure to hold it together so that I don't get everyone else depressed. So I'm sitting here alone, crying.

I'm reading 'Late Fragments' by Kate Gross, a lady who died late last year of bowel cancer in her 30s, living behind a husband and two sons. She wrote it as something for her sons to read when they're older. I thought it would be comforting but I can't relate to her at all, I have no idea how she was so calm about her impending death and never seeing her family again. I'm reading stuff by Philip Gould, again not getting the calm he experienced with his death sentence. I know he was older but my 60-something mother confided she'd be terrified to be handed a terminal diagnosis. It's not necessarily age-related.

And, between all this, I can't helps getting brief fits of anger: "Why fcuking me?" But then, why anyone? And would be an better if I was fifteen years older with children left in my wake?

HelgaWard

Hi again,
Just wanted to see if you had heard about Lisa Lynch who wrote the C word blog, about her experience with terminal breast cancer. http://alrighttit.blogspot.ie/p/about.html
You might be able to relate to her more. She had a loving partner but no children, her blog can be very funny at times. Sheridan Smith recently stared in a program version of her story.

LegacyUser

I wasn't that keen on her blog but I found a few other really relateable ones such as this:

https://fightinggenghis.wordpress.com/

This one is also good: http://writtenoff.net/author/elliejeffery/

I think different personalities speak to different people.

I'll tried to boil it down to my greatest sources of sadness and fear.

- my loved ones and how they'll cope
- the loneliness my boyfriend will feel. I desperately want him to move on quickly, I don't want him to retreat
- fears about the final stages of illness

lazygal

OP I think you're amazing and so brave. The Irish Cancer Society offers couselling services, might be worth looking into. It's ok to be a bit selfish, why not get the expensive phone you want and not worry about the cost too much if you need a new phone. I'm sorry I don't have better advice for you but your attitude is really amazing.

HelgaWard

TarPatrice wrote: »

I'll tried to boil it down to my greatest sources of sadness and fear.

- my loved ones and how they'll cope
- the loneliness my boyfriend will feel. I desperately want him to move on quickly, I don't want him to retreat
- fears about the final stages of illness

That's great you have found some blogs/resources you can relate to. Really anything that provides you with any kind of comfort, I think you should bloody grab with both hands. I agree with the poster that said, get yourself the new phone.

Listen your loved ones are going to be devastated, and sad, and all the other horrible emotions that come with loosing a loved one. There really is no way around that fact. But you have to give credit to the human spirit, and the strength of human nature, humans unfortunately have had to deal with pain, suffering, loss, bereavement, and however subconsciously this is, human beings are designed to cope with these things. It is the uncomfortable truth that life goes on. Your loved ones will have dark times, but time is a healer of sorts, a numb-er of feelings. The sad memories of your death will fade and the beautiful memories of their happy times with you will be the ones they choose to remember. That is why you should try and create as many happy memories during the time that you have left. I think writing letters to loved ones, would provide huge comfort to them when you are gone. They will know they were special to you, and what you loved about them. Maybe write down things like your favorite book/movie/song and tell them why you loved it. If you can sing record yourself singing. My husband lost his brother 6 years ago, aged 33 so suddenly with no warning. It was and still is shocking. I cannot emphasize how precious our wedding video his, because we can hear his voice during the speeches. There are some lovely photos of him from that day also. Objects like his watch and ring and even the umbrella he used as soooo precious to his family. Maybe you could decide in advance if you would like to leave some pieces of jewellery, or a favorite item of clothing to your loved ones. They don't need to be valuable items, they just need to be important to you, and for your loved ones to know that you chose for them to have that item, would mean the world to them. Our two children were not born when my brother in law died, but they still talk about him all the time because we do. He is remembered, he is loved, he is talked about, even though sadly he is not here anymore.

Everyone deals with loss in different ways, your boyfriend will deal with his loss in the best way he can. Moving on quickly may or may not be the best way for him. It is really his decision. All you can do is talk to him, be open with him, and tell him what you would like for him to achieve in his life. Please don't shut him out now, he loves you, he wants to be with you now, for whatever time you have left. If you push him away now, you may make it harder for him to cope when you are gone. If he knows ye both lived and loved to the best of your ability during the time that you have together, he might get some comfort from this when you are gone.

Regards your fears about the final stages of the illness, you should talk to your palliative care team. They may be able to prepare you to some degree for what you can expect. I know they will do the very best they can to minimize your suffering.

Wishing you all the very best.

Diamond Doll

TarPatrice wrote: »

I'll tried to boil it down to my greatest sources of sadness and fear.

- my loved ones and how they'll cope
- the loneliness my boyfriend will feel. I desperately want him to move on quickly, I don't want him to retreat
- fears about the final stages of illness

- In a way, the best way you can help your loved ones cope is by relying them and letting them help you as much as possible in the time you have left. Thank them regularly and honestly for every thing they do for you - big and small. Leave them knowing that they did everything in their power to make the last of your time on earth as happy and as comfortable as possible. It may feel at times as though accepting help is a weakness, or that it's unnecessary at times, but allowing them to care for you is as much for their sake as yours. It must be so frustrating for them knowing they can do nothing to save you, so at least give them the opportunities to do whatever they CAN do to help.

- As for your boyfriend - put yourself in his shoes. If he were the one dying, wouldn't you feel quite angry and upset at any suggesting of him wanting you to move on quickly after his death? He will grieve your death, and will miss you, and he'll move on with his life - but at his own pace. Don't pressurise him with expectations or wishes about how/when he'll move on afterwards. He'll have to find his own ways and coping mechanisms. Please try not to worry too much about him (easier said than done, I know!)

- I can only imagine how worrying it might be to think about the final stages of your illness. There is excellent palliative care available, which will help enormously with the physical suffering, but I imagine the mental anguish will be more difficult. I guess the best way is to confront it head on. Plan your funeral and plan how you'd like to be remembered. Look at all your achievements in life, and plan whether there is anything else you want to do in the time you have left. Don't be afraid to reach out to those close to you about your fears. It may be worth discussing with your healthcare providers whether some sort of anti-anxiety medication may be good for you to help you enjoy your life without being overcome with worries (no matter how justified those worries are.)

Would you consider starting a blog? It might help focus your thoughts and address your fears and concerns. It might also be a nice memory to leave behind for your friends and family.

LegacyUser

You're right, I can't control how a person grieves. I just desperately want him not to be lonely, and to be OK. My family will have each other, he'll be kinda cast adrift, though he has a very supportive family too.

Feeling very low the last few days, this is such a burden to carry. I would prefer a swift accidental death to this.

mud

TarPatrice wrote: »

You're right, I can't control how a person grieves. I just desperately want him not to be lonely, and to be OK. My family will have each other, he'll be kinda cast adrift, though he has a very supportive family too.

Feeling very low the last few days, this is such a burden to carry. I would prefer a swift accidental death to this.

I hope the low feeling gets more manageable. Would you consider talking with your boyfriend's family and close friends and put yourself at ease that they will make him their priority when your life ends? Only if you were feeling up to it.

All the best Tar.

LegacyUser

mud wrote: »

I hope the low feeling gets more manageable. Would you consider talking with your boyfriend's family and close friends and put yourself at ease that they will make him their priority when your life ends? Only if you were feeling up to it.

All the best Tar.

Yes, I've thought about it and I will. One of his close friends would also be a friend of mine, which makes him easier to talk about it, but it will also be a sad conversation.

I've been thinking of starting back on anti-depressants I was on years ago that I found good, they might even just take the edge off a bit. Even though this is depression caused by a very definite thing, it might help. To be honest, I'd love to be feckin' tranquilised but no doc would prescribe for that. They are even reluctant to give me too many Xanax!

mud

TarPatrice wrote: »

Yes, I've thought about it and I will. One of his close friends would also be a friend of mine, which makes him easier to talk about it, but it will also be a sad conversation.

I've been thinking of starting back on anti-depressants I was on years ago that I found good, they might even just take the edge off a bit. Even though this is depression caused by a very definite thing, it might help. To be honest, I'd love to be feckin' tranquilised but no doc would prescribe for that. They are even reluctant to give me too many Xanax!

Take anything at all that helps! Not in any way advocating illegal activity but someone I know used a certain plant to great effect when combating nausea and appetite problems.

Ah you poor thing having to face so much. Do it at your own pace and please try and do something nice for yourself every day. Personally it's the little things that give me pleasure. A pretty glass and plate for dinner. Quirky mugs and silly things like that They don't make the food taste any better but they bring me a little bit of joy anyway

Tina82

dont have any advice to give you as i am lost for words ....i hope today is a better day for you x

LegacyUser

Hi TarPatrice,

Why not read some of the scientific research ongoing into near-death experiences. It might put your mind at rest just a little.

ILikeBananas

Hi OP,

I'm reading a book at the moment that might be up some help to you. It was written by a psychotherapist with years of experience of treating people with their death anxiety. The author takes a non-religious perspective which seems to align with your own belief. I'm only a quarter of the way through so can't give an informed opinion (it's very interesting so far though) but have a read through the customer reviews in the link above and see if you might be interested in it.

Merkin

TarPatrice wrote: »

Yes, I've thought about it and I will. One of his close friends would also be a friend of mine, which makes him easier to talk about it, but it will also be a sad conversation.

I've been thinking of starting back on anti-depressants I was on years ago that I found good, they might even just take the edge off a bit. Even though this is depression caused by a very definite thing, it might help. To be honest, I'd love to be feckin' tranquilised but no doc would prescribe for that. They are even reluctant to give me too many Xanax!

Good, constructive palliative or hospice care looks at making a person as happy, secure and comfortable as possible. You have a lot to contend with my dear, enough to melt anyone's head, and if you think some medication would help then you go and seek it. ANY good clinician will be supportive of this, you could ask your palliative care team to support same. It's OKAY to shut out the noise and chatter a little so get it if you feel it will help.

You are essentially grieving and going through a living bereavement so you are bound to feel anger, hurt, pain, anxiety and all of those other raw-as-fcuk, stomach churning emotions that only ease with time and due process.

Thank you for posting in this forum. I really mean that. To share something so personal and terrifying also shows an openness and generosity of spirit that is to be admired and respected. Thank you. And I wish you the very best. When you've come to terms with this, and you will, go and live life to its fullest. You sound vibrant and brave and really rather lovely and for the remainder of your days I wish you happiness and peace xx

Payton

This brings up feelings of our sister who passed away in February. Like yourself OP she was terrified, numb and so confused about what was ahead of her and how we would get on in life without her.
She gave us the gift of Happiness-by that I mean she brought so much in to all our lives every day from a text or a call but something simple.
She gave us Hope-she showed us that there was always hope..13 years struggling with cancer yet fighting a good fight and mostly came out smiling.
She gave Love-the simplest thing that you can express to another person and she showed it everyday she fought her illness.
She gave us Understanding-understanding that she was the same person in front of the illness and what it was doing to her, never letting it get her down.
She showed us-Bravery....self explanatory.

What I'm saying she left a legacy that we bring into our lives every day and we do it with purpose and your doing the same with your family.
Your fighting your own demons and I can't even imagine what state your mind is in.
People will read this post in time maybe years and thank you for being open and honest on your journey.

Sunflower 27

Just want to say I am finding your courage through this truly inspirational. That you care so much about others when you are going through this has really impacted on me and brought tears to my eyes. I hope this doesn't sound too odd, but I would have liked to have had you as a friend.

I wish you peace and much love. Xx

daisybelle2008

TarPatrice wrote: »

I wasn't that keen on her blog but I found a few other really relateable ones such as this:

https://fightinggenghis.wordpress.com/

This one is also good: http://writtenoff.net/author/elliejeffery/

I think different personalities speak to different people.

I'll tried to boil it down to my greatest sources of sadness and fear.

- my loved ones and how they'll cope
- the loneliness my boyfriend will feel. I desperately want him to move on quickly, I don't want him to retreat
- fears about the final stages of illness

OP you write very well, would you consider your own blog? I find myself relating to your experience so much even though I am not even ill!, I think a lot of people would relate. It is sad that you are really afraid of expressing yourself fully to those around you as you don't want to stress them, but I understand that.

SATSUMA

I don't know what to say but i can share my little story.

My little sister died of cancer aged 22 and when she was told it was terminal she cried for us who were left behind. That was her initial reaction. To this day i feel the guilt that she thought of us first and not herself. I can only imagine how painful that would be. I wish she had cried for herself and let go of the enormous pain of our imagined grief and our life without her.

You have every right to feel every emotion that comes your way at any moment. But be mindful that what you feel belongs to you and not to someone else. You need support and sometimes a stranger (ie therapist etc) can offer you the freedom to do and feel what is necessary.

Personally, i think end of life plans are really important. Tell your family the sort of mass you want. My sister was most concerned about what she would be wearing!!! And she looked well if i can say that. I'm glad she picked something as I am not half as fashionable as her. To those that havent experienced it, this may sound strange, but it's not. If you dont care, then thats ok too.

You joined this world, you made an impact and you are and always will be loved and remembered. Always. Take control of how you chose to live/ leave.

You can do this and you are not alone.

PS We found ARK in Dublin very helpful. You can call them.

xx

Sunny Dayz

Hi OP. First of all I am sorry to hear of your bad news.


I read your thread before my lunch break and thought about it all the way through. What stuck in my head was how you seemed to be thinking of everyone else, which is admirable. But you seem to be almost not wanting them to help you or to get too involved with you. You seem to be bottling up your feelings and emotions, you said in one post you were sitting alone crying. Now I know we all need our moments of alone time to have a good cry but you do seem to be shouldering all the worry and stress of your illness which you shouldn't be.


IMO I think you should be allowing your family, friends and boyfriend to help you out as much as they can. It might sound strange but I actually think it will help in their grieving process. The reason I say this is from a personal experience of my own - not cancer related. A friend of mine took her own life a few years ago. Myself and our friends kept saying afterwards, why didn't we do more, contact her more, notice the signs etc etc. I broke down one night a couple of years after she had passed and admitted to one of my friends that I felt so guilty for not being in contact with her as much as I should have, I felt I wasn't there for her when she needed someone and it turns out we all felt the same way. As tragic as her passing was though, she was gas woman altogether, and the night of her wake we were crying with laughter in the pub recounting all the funny stories and incidents!!
I would urge you to make the most of the time left with your friends, girlie nights in (let them do the organising). Share all your stories and memories and secrets and leave your friends with these memories after you have passed away. I think it will help them to grieve.

rosknight

sound advice there. I can concur with that.

IrishAlice

OP I'm so sorry to hear about what you are going through, it is truly the most difficult thing anyone could ever experience.

You are incredibly brave even if you feel that you are not. I don't think I could be nearly as articulate if in your situation.

For your own peace of mind please do consider speaking to someone about how your are feeling, whether it be a friend or family member or a counselor. You are dealing with so much as it is without feeling you need to put on a brave face and deal with it alone.

I think you are amazing to be coping the way you are and I'm sure everyone here feels the same way.

I wish you all of the best and I will keep you in my thoughts and prayers.