I was first diagnosed with adenocarcinoma of the tear gland in 2016 and my right eye was removed, I recovered well but in 2018 it relapsed locally and I had further surgery and radiotherapy. I then recovered again and believed I was clear for a second time, however this year I have been told its metastasized to my lungs, the layer of fat under my skin, bones around my ribs and spine, liver and, after several seizures this month, I have been told its in also in my brain in several areas. It has spread so fast and so far it is unlikely to be possible for anything to work in the way of a treatment however I am having chemo in an attempt to hold it off. Coronavirus had stopped the opportunity for me to get access to a trial so I am just holding onto what I can control. I am grateful for the opportunity to prepare as many people do not get this especially at a young age and I am making the most of what time I have left, sending gifts to friends and family, taking plenty of photos for the children and ensuring they have plenty to remember me by. I am posting this again as I didn't post my proof well enough the first time around, I am sharing my Instagram page with you all as proof but I have also posted on Instagram mentioning this AMA so hopefully this time, this will post OK.

EDIT: I JUST WANT TO THANK EVERYONE FOR YOUR SUPPORT, QUESTIONS AND ADVICE, I THINK I'VE ABOUT CAUGHT UP BUT I'M SORRY IF I'VE MISSED ANYTHING. I CAN'T BELIEVE HOW MUCH ATTENTION THIS POST HAS RECEIVED. THE DONATIONS FOR MY FUNDRAISER HAVE BEEN INCREDIBLE TOO AND I'M INCREDIBLY GRATEFUL FOR THEM, I NEVER EXPECTED SUCH AN OVERWHELMING RESPONSE, IT'S BEEN AMAZING, THANK YOU ALL!

My Instagram page as proof.

Comments: 1705 • Responses: 49  • Date: 

ArchyNoMan2875 karma

Are you in control of your death at all? Meaning, should you wish to use it, do you have a way out before the cancer takes you?

This question is in the front of my mind as one month ago my girlfriend died but unfortunately did not qualify for my State's Death with Dignity Act and therefore was forced to suffer (and all of us had to watch).

I very much hope that you are in control of your eventual fate.

Bling-kofaneye3440 karma

I have signed my health decisions over to my parents for when I cannot make them myself and I trust them, I have spoken to them about my wishes and I know they will not let me suffer. I don't know legally what the options are in England but I should probably look into that so I'm grateful you have brought this to my attention, thank you.

Philosophile42654 karma

What is your favorite flower? I was planning on doing some gardening, and i’d like to plant something in your honor.

Also can you find my cat Fizzgig and tell her she was a very good girl, and we miss her? Thanks.

Bling-kofaneye747 karma

I will pet all the animals I can if this is a possibility, that will be a huge silver lining on everything and something I will look forward to. My favourite flowers are roses or lilies, probably but I love most flowers, if you would like to plant something for me, then plant something for the bees please, they need them more than I do.

honeybeary638 karma

Are you afraid? I know this might seem stupid but I've always imagined myself in this situation and felt like I'd feel a sense of peace, especially being able to get all of your affairs in order.

What are some things you plan to do before you get too weak?

Also cancer sucks, im sorry you have to go through this.

Bling-kofaneye1257 karma

I'm not afraid and do feel at peace. I always thought I would be scared but I've taken care of any legal matters that needed sorting, I've brought gifts and mementos for my family, friends and children, I've taken lots of photos and put them into albums and generally just organised everything I feel needs organising.

So many people don't get the opportunity to prepare for death, especially at my age, so having this time and warning is a huge relief. I have been able to speak to my parents and friends about my wishes after I pass and I have my will all sorted too.

I would love to take my children away somewhere, have a big 'pre wake' party and maybe have a professional picture shoot but it depends on time and restrictions due to coronavirus so for now I'm not sure if I have anything I desperately want to do, I am just waiting to see what happens with my health and the lockdown situation.

JSmithphotography491 karma

Where do you live? I might be able to help with photography

Bling-kofaneye300 karma

I'm in South East England but I have offers from local photographers already. Thank you so much for your offer though.

SlendyIsBehindYou147 karma

have a big 'pre wake' party

I'm not sure what your exact plans are, but on that note I did wanna ask if you've considered recording anything for a wake or funeral? Hope that's not an insensitive question, I just remember when I was a kid one of our church members passed from cancer but recorded a whole speech to play at the funeral. It was very funny and uplifting and kept the mood positive. She even had the outtakes play during the meal (she had them bring Panera in then joked that we were all waiting for her to shut up so we could eat.) I was only 7 but it really stuck with me.

I'm tryely sorry about your situation but incredibly impressed by your mind-set about all this. You're a great mom for getting so many photos, its gonna mean so much your kiddos when they grow up. Wishing you the best from Texas!

Bling-kofaneye101 karma

Thank you so much for this comment! I love this idea and will certainly take it into consideration. I hope we can all have a party together, all my family and friends and loved ones but the idea of having a video for others after I'm gone is wonderful. I don't want to be buried but even a video for a memorial service would be great and I'm sure it would mean so much to my children and everyone who cares about me.

bluehat9136 karma

Have you ever tried psychedelics? In life or after your diagnoses? You have an inspiring outlook.

Bling-kofaneye121 karma

Nope and I don't think I would. Thank you, I want to stay present especially with an unknown amount of time left.

RaiRaiTheRaichu511 karma

How did you feel after each diagnosis, the first, second, and now the third time?

Bling-kofaneye1088 karma

The first time I was in a terrible relationship, I had very little support and the situation helped me better my life, I changed everything including my mindset and my life improved dramatically. The second time I had the surgery and radiotherapy and felt very confident that it was gone and I had so much support from friends and family that it was almost easy. What's been hardest this time has been knowing that I can't go out and do the things I would like to do due to the coronavirus situation and its been harder to think of a cure as such. I've known from my diagnosis that it's much more serious, I have always been concerned about it spreading to my lungs as I know this is usually incurable and that's where it was found first, this time around but I remained hopeful that I would last until a trial was available. The brain metastases is extremely worrying as its basically given me a time limit of days/weeks/months. A seizure could take me any day realistically or my chemo and medication could keep me alive an unknown amount of time. It's very strange with the uncertainty but I just try and concentrate on the positive things.

PKassotis363 karma

[deleted]

Bling-kofaneye800 karma

My friends, family, a good sense of humour and just taking each day as it comes, keeps me going. I feel worse for those who love me as its them that will this will affect the most but I am just making sure I leave behind positive memories and plenty of pictures.

argle-bargling307 karma

Hey Toni, Thank you for doing this and sharing a glimpse in to your story. You sound like an incredible person.

Do you have a sense of freedom? Do you have a “bucket list”? If so, what’s on it?

Bling-kofaneye424 karma

I would love to travel and see the world but it all depends on how things go. I want to try and take my children away somewhere too, they would love to go to Legoland. Luckily last year we had a lovely caravan holiday and went London, we really enjoyed ourselves and I had holiday to Amsterdam with my best friend that was the best weekend of my life so I feel I have had some fantastic experiences these past few years.

c_o_o_k229 karma

Shit... I couldn't imagine being in your shoes right now :/... What are some things that are keeping you sane at the moment? What music do you listen to? Any favorite stories from your childhood you would dlike to share? Thanks man <3 I hope and wish you will make a full recovery.. We are all here for you.

Bling-kofaneye308 karma

I asked my family and friends to share memories and photos from my childhood and that's been wonderful, it's amazing to look through old memories and remember things that had been previously forgotten. A dark sense of humour really helps and me and my family have been coping with making some terrible jokes. Music wise I listen to so much, it's been nice to just shuffle through things I liked as a child/teenager. I'm just enjoying old memories mainly.

onlyididntsayfudge214 karma

Hey Toni. What are you most proud of in your life?

Bling-kofaneye781 karma

Starting to stand up for myself and turning my life around around after leaving an abusive relationship. Only 4 years ago I was homeless with nothing after leaving someone who hurt and disrespected me. I now have a house, started my driving lessons, been accepted into university and saved enough money to get back on my feet and do these things. It's frustrating as cancer has now stopped these again but I can leave positive memories behind now rather than memories of sadness and pain and this makes me feel proud.

yesssitsme176 karma

What did someone do or behaved that made you feel better? Many a times people feel they are helping but it just makes them annoying or completely useless

Bling-kofaneye249 karma

Most people have been so kind and helpful, I don't find people annoying as I understand its difficult for people to know what to say but the people who have sent me kind gifts are so very appreciated however I do feel people do so because they don't know what else to do and I wouldn't want them to feel they have to buy me presents. Some people have offered to organise having photos taken and I think this is a wonderful idea and I've been sent things to make memory boxes with the children too which is lovely.

myIDateyourEGO38 karma

Cooking for people helps. If people feel inclined to help, ask them to help with meals for your family a bit so you all can concentrate on the time you have. Unless, of course, you enjoy cooking together. Than have at it.

I cannot imagine and I have no real words - but I'm going to go hug my kids now, and value today a bit more. Thank you for that.

Bling-kofaneye73 karma

I moved in with my parents after my first seizures so they have been doing everything for me. It's been wonderful having the support as the first few weeks after chemo was very difficult on my own without the help especially with the children at home. I've had friends making me cake and bringing me fruit boxes which is great too and also helping with my shopping. Everything practical like that is the most helpful really.

Novus117174 karma

Hey Toni, thank you for starting up this AMA. This is hard to relate to, I've teared up a few times now trying to write this out. Your story is just heartbreaking, I desperately want this to not be the way things are, but as best I can tell you seem to be in a place of acceptance and I find that remarkable and brave.

My question for you is this: how can someone in your situation be best supported? If I were a family member or a loved one, what could I be doing that would be both meaningful and impactful for you?

Bling-kofaneye126 karma

I'm very lucky as I have my family cooking for me and helping me with my children. It's hard to answer this as I feel everyone has different needs and wants. I feel so supported and I think my favourite things people have done for me are share memories and photos. I had a friend make a video of good wishes from my loved ones and this made me so happy, it was definitely the most meaningful thing anyone has done for me.

gekokilla125 karma

How are you? I'm sure everyone has plenty of questions. But it is great to know how you holding up.

Bling-kofaneye185 karma

Surprisingly well, it's good to be organised and concentrate on the positive things.

Proffesssor28 karma

You mentioned children, and taking pictures. Have you left them a video? Audio telling them you love them? these could be incredibly valuable to them in the future.

Bling-kofaneye51 karma

Yes, and I've been writing little letters too so they have my handwriting. I have also made them a private Instagram of pictures, memories and stories of things we have done for them to read when they're older.

Carrollmusician73 karma

What’s most important now? Follow up: what do you find humor in right now? I’ve had several terminal family members who surprisingly grew an amazing sense of humor once acceptance hit.

Bling-kofaneye104 karma

Pictures and memories mainly. I am making memory boxes and have brought jewellery for my children, family and friends. My humour is mainly jokes about being dramatic and dying, it just keeps us all laughing and smiling in these dark times.

yyc_guy66 karma

How are your kids holding up? I can’t imagine going through what you are, the thought of leaving them behind would crush me.

My condolences to you and your family, stay strong.

Bling-kofaneye84 karma

Children are surprisingly resilient and have witnessed me having cancer treatment for over 4 years so although it's very difficult for them they're handling things so well.

TheBestFishy58 karma

Hi Toni! What were the signs and symptoms for when you got the first adenocarcinoma? How did you know when to get it checked?

Bling-kofaneye49 karma

The first time I visited an optician due to my eye being swollen and pushed forward, I was in pain and had blurred and double vision. I then was sent for scans, then biopsy and things went from there. The 2nd time I asked for another scan as I had the pain around my eye that seemed similar to the first time. This time I had a cough and a lump that I thought was a bite, so I really thought it was nothing however the doctors got me checked because of my history, I had scans then biopsies and it was confirmed. I had a PET scan which showed the extent of the spread and then the brain metastases was discovered after several seizures and more scans, it's progressing very quickly this time but I just hope my chemo and medication keeps it under control for now at least.

vanderdeckenman56 karma

Whats your favorite video game

Bling-kofaneye119 karma

I don't really play video games, I'm partial to some just dance or Mario kart with my children though.

mostexalted49 karma

I’m a recently graduated nurse going to work on an oncology floor. I eventually want to work in palliative care (since it was taking care of a friend with cancer as his life ended brought me into the field).

What can a nurse do to make a difference for you when they’re taking part in your care? Any advice is welcome. I try to be open and honest with my patients while listening to them and not speaking in platitudes or empty “therapeutic communication”. . . but I always worry I might be missing something fundamental (or even something small that I don’t yet know to anticipate).

Thank you in advance for everything.

Bling-kofaneye32 karma

I personally love being able to just chat to the nurses. It's difficult as they're often busy but especially with the lockdown situation it's nice to talk to people. Some people are overly sympathetic and I appreciate it but it's nice to just make the odd joke, have a laugh and not have people feel sorry for me. My chemo days are very long, I'm often there for at least 6 hours so I really appreciate it when people just stand and talk to me like a friend. Thank you for what you do, being an oncology nurse must be a very stressful job, especially at the moment so you're very appreciated and the fact that you're asking how you can help shows you have a very kind nature.

honeybeedreams39 karma

my mom had 37 years between my father’s death and hers to ponder her wishes. she had a thing about matching and symmetry. (math nerd) but my dad hated 2 sided headstones, where one side was empty. (he used to say, “what? coming attractions?”) so it was important to her to have her headstone match my father’s as much as possible. (being jewish, very simple, no epitaph) the only thing unique i was able to have was the symbol at the top, since my father’s stone has a square and compass, the freemason symbol. what one sentence would you like on your headstone? most people have things like “beloved ______ .” or a religious symbol. my mom planned her whole funeral (which was a blessing), but i would have liked her to pick an epitaph (honestly, both my parents would have chosen some sarcastic or smartass quip.) but in all honesty, even if it’s sarcastic or snarky, what would you choose? i believe that it’s so important for people to talk honestly and directly about their desires directly following their death, but my experience is people only talk about their end of life desires (which is good too).

Bling-kofaneye93 karma

I don't want to be buried, ideally I want to donate my body and I have filled all the paperwork out to do so but I'd rather be cremated than buried. The thought of people paying so much money for me to sit in the ground when I could be useful astounds me. I love the idea of my ashes being used for something meaningful, that would be much better. You can get beautiful jewellery or be planted into a tree or plant, I feel this is more 'me' than a headstone.

atomuk16 karma

Hopefully you get your wish and you can donate your body but just a little word about the headstone, it's still a good idea to get something (not necessarily a headstone) even if you donate your body IMO. I know it helped my family when my mam died that we had somewhere quiet nearby where we can go and visit her anytime we want, even though she was cremated and her ashes were spread elsewhere. Just having a little plot dedicated to her really does help.

Bling-kofaneye17 karma

I love the idea of small garden for people to memorialise me, something that can grow but also people can go to remember me. I think a small plot is a wonderful idea thank you.

NamCam5Oj35 karma

Everyone once and awhile I think of my age and my life expectancy and I get afraid. I'm 25, have a beautiful wife and a 3 year old son. I know I'll die some day, but the fear of not knowing when really gets to me. I always joke that I'm only aiming for 50 years old, but honestly I don't know. I'm healthy, just a bit overweight. I feel literal fear sometimes when I think that I haven't accomplished anything with my life. I stopped out of college. Joined the Navy and feel like I'm kind of stuck and will never accomplish anything I really want to do. The only real thing I want now is just to own a fast car and that feels like it's near impossible too. Have you ever felt fear about not accomplishing something you wanted to do?

Bling-kofaneye14 karma

Not a fear as such, it's hard to know I won't get to finish my driving lessons and I had been accepted into university which I won't get to do either but I am concentrating on the things I have done. Having this time to prepare, making memory boxes, leaving pictures and videos and enjoying the small joys in life are keeping me happy. So many people have no time to prepare and there are people in the world who have nothing or really suffer so I just appreciate what I have and I am grateful for the things I have done. The past few years of my life have been full of great moments and I love looking back on them and talking to my friends, family and children about them all.

realjoeydood32 karma

Do you get angry when people call you Tony with a Y instead of an eye?

Bling-kofaneye54 karma

YES! haha hence the joke. People spell my name wrong all the time so it's nice to have the joke to correct them with. It's fun to watch people's reactions when I respond.

fluffy_butternut28 karma

I apologize in advance if this comes across as insensitive or offensive.

After some of the things I have read and direct experiences in my life I THINK that if I got diagnosed with cancer and it was fairly advanced that I would be inclined to not go through chemo and just try to enjoy whatever time I have left.

Can you provide some insight into your thought process to have chemo treatments this third time?

Bling-kofaneye40 karma

The first time I only had surgery, the 2nd time I had radiotherapy which didn't really have much effect on me but its been difficult to decide about chemotherapy, at first I felt so sick and tired, I almost considered not bothering but I feel I should for the children and with the medication I'm on to stop the side effects, I don't feel too bad and it's worth it from my perspective.

gggjennings24 karma

Hi Toni!

I don't have anything to ask specifically, other than--is there anything YOU want to talk about or discuss? Any burning questions you have for internet strangers? Any topics you just want to unload about?

Bling-kofaneye24 karma

I've asked others on this post but my main questions are about things I can leave my children and family in the way of memories. I would love any advice from people who have lost loved ones. Maybe messages I could leave my children. My son is autistic too so any advice on helping him understand would be amazing, he's so very intelligent but they have also seen me beat cancer twice so I think they believe I can beat it over and over and I worry it will affect them a lot if/when I don't. Other than that I'm just so appreciative of the support this has received, I love the thought of being able to encourage people to enjoy the small things and be grateful of the things we don't think about. Hopefully people put themselves first more, society puts too much pressure on people and life should be about having more fun.

ebrizzlle22 karma

Do you have a bucket list? I want to ask about your dreams and crazy ideas~ from climbing Everest to throwing a pie in XYZs persons face, we all have those inner passions that maybe we can or can't ever go through with. What are yours?

1~ Where in the world do you want to visit? And what would you do there?

2~ You walk on stage in front of a crowd of 100k screaming fans who will rock and cheer you on as you belt out your favorite tune (no matter how good or bad you are) what song is it?

3~ Famous person you'd love to ~~~~ a)throw a cow pie(cow poop) at?
b) debate on national news c)challenge to a duel d) have a beer with

4~What else do you really want to do?

All the best my dude.

Bling-kofaneye21 karma

  1. I would love to see Australia, that would be my ideal dream.

  2. That's so hard, I have a huge variety of favourite songs and I love to sing. I would love to do this so a choice of one song would be difficult to choose.

  3. a) Oh I have a certain person that made 10 years of my life very miserable but he's not worth the time, effort, thought or cow poo!!! b) I don't follow much in the way of news, the way the world works makes me grumpy, anyone who could change the world with me and give people more freedom and happiness! c) a duel I really don't know d) someone who would make me laugh, be understanding and I could have fun with.

  4. I think the main things would be involving seeing my children get older, have a nice relationship and being around for my family but I don't dwell on these things, I just like to concentrate on the good things that I can focus on.

stupidgregg17 karma

Other than the love that you've seen and felt from other people, what do you like most about your time here?

Edit: of > that

Bling-kofaneye73 karma

Nature is beautiful, we never stop to appreciate the world like we should. The small things like rain, snow, sunsets are things that I appreciate more now. I wish I'd travelled more and cared less about people's thoughts, how I look and the superficial things and appreciated the beauty of life and loved myself for who I am.

Crackracket17 karma

How do you cope with knowing that you are going to die? My aunt died of cancer in December she was diagnosed in November and died on new years eve, since then I have been having existential anxiety. How do you manage you manage that?

Bling-kofaneye16 karma

I feel surprisingly calm, I don't know why but I just appreciate being able to prepare for it. So many people don't get this opportunity. No one knows what the future holds so I don't feel anxious about it, it can happen to anyone at any time so if anything the knowing helps me feel more organised and at ease.

Boezoek15 karma

This might be blunt sorry in advance but have you thought about pulling the plug when you get to the stage where it is unbearable? And if so when will you decide enough is enough.

Bling-kofaneye49 karma

I have spoken to my parents about this as they will make the eventual decision but I trust them. They won't let me suffer and they will take care of me until the end. I am lucky to have such brilliant family, friends and relatives.

Chyvalri15 karma

I am terrified of what you have. I can't put in eye drops or stand it when I or someone even puts something close to my eye.

How do you cope with having such a sensitive area worked on?

Bling-kofaneye30 karma

I've never been particularly squeamish and I find medical things fascinating so this really helps. It was very painful but I also knew it was necessary and gave me extra time with my friends, family and children so that keeps me going.

JELLYJACKY2913 karma

Do you have anything to say about the fear of death? And are you scared or are you at piece?

Bling-kofaneye20 karma

I'm at peace and happy I can prepare. I feel worse for my loved ones than myself.

Happymeal9312 karma

Hi there, first and foremost I am so sorry you’re going through this <3, I’ll be praying for you and for a peaceful resolution to all of this. My question is, have you considered making some videos and/or writing some letters to be provided to your kids/family members on some of their big days? I lost my mom at the age of 16 and just graduated college last week, while getting married a week from today. There was no video or letter for graduation and probably won’t be for the wedding either (and that’s ok, she was taken rather fast by Cancer). But, I have thought how sweet it would be to have heard her voice again or read her writing one more time. That would mean more than any other gift could. Just a thought. Love and prayers to you and your family! Stay strong and never stop laughing!!

Bling-kofaneye6 karma

I have, I have written a few letters so they have my handwriting and I always save birthday cards but I have plans to make cards for the future too, I want to do some handprints with them and perhaps make a mould of our hands if I can find a kit. I've brought them some jewellery and I will make videos too. I have made some photo albums and a private Instagram of memories for them but these ideas of things I can leave my children, friends and family are really appreciated, thank you. I've been thinking of things a lot and I would love to know more about what would mean the most of people. I will definitely make more videos and maybe some voice recordings too. Thanks for the ideas, I hope you're well and I'm sorry you lost your mum so young.

Lesinju8412 karma

I watched my mother go through 9 years of chemo for colon cancer (found it at stage 4). I watched her suffer through weight lose, lack of eating, losing feeling in her feet so less walking. I now carry her some of her ashes around my neck. She passed away Dec 13, 2028. It completely and utterly change almost every part of me after losing her. She was always in high spirits, she would always preach and blog and remind people to go get checked out by a certain age. She would wear a blue wig during cancer awareness month. I miss her immensely. Even though she was suffering she kept her head up and stayed strong, had she not who knows what kind of state I or my siblings would be in. I saw your reply when someone asked did you were afraid and you answered that. So I guess my next one would be, what do you do or have done to help prepare the people that will lose you?

Bling-kofaneye6 karma

I've brought small gifts, made videos, printed photos, made photo albums, made memory boxes and spoken to everyone about memories and good times but I also want to leave voice messages, handprints, cards and everything I can. Your mum sounds like a wonderful person and I'm so sorry your lost her, if you want to talk then message me but also anything you can think of for me to leave my children, I'd be grateful for any ideas or tips you have. My thoughts are with you.

noblekaine8 karma

Hi Toni! I just want to say I saw your Instagram and you are very beautiful. I’m sorry for everything you are going through.

I’m a nurse, is there anything that you’ve experienced during your encounters with healthcare professionals that you wish you could change?

Bling-kofaneye4 karma

I have so much respect for the healthcare professionals. I've always wanted a career in medicine from a young age and the people who have cared for me over the years have been so amazing. I don't think I could choose anything I would change, I wish nurses and other medical professionals had more time to be less pressured. I worked in care homes and I would love to talk to the patients about themselves and their lives but time was always so tight.

MagicianMurphee7 karma

Wow. This is just sooo intense. First, I want to thank you for offering to share this with us. Second, my question... Would you be ok with me perfoming a prayer ritual for you? If so, are there any special thoughts or symbols that would really hit home with you? I just want to send you as much good juju as I possibly can!

Bling-kofaneye11 karma

I'm personally not a religious person but I'm very open minded and have had people pray for me so I am open to it I just don't really know about particular thought or symbols. Thank you for the support!

wellbloom6 karma

I have a question. Are you sad about dying or are you at peace? If you’re at peace with dying, what coping mechanisms have you found beneficial?

Bling-kofaneye11 karma

I'm sad for my children and loved ones but personally I'm at peace for myself. It happens to everyone and I have time to prepare which is a lot more than so many others.

A4S8B76 karma

  • Are you still mobile? Get like $200 in coins, bury them some where, and then leave the treasure map some where where kids can find it.

  • What does no Trail mean? Dose that mean that you can't try newer, un-confirmed forms of treatments, like stem cells?

  • Are you going to donate your organs?

  • Did you get to go coffin shopping?

You should buy one of those selfie sticks so that you can record yourself a lot like those youtube streamers. That should make it easier to record lots of personal time for loved ones.

Bling-kofaneye5 karma

I have filled out to donate my body to a medical school but no one will want my organs unfortunately. I am an organ donor but they don't take organs from people who have had cancer. I'm currently waiting to see how the chemo is working, it's early days but I will be having a scan soon and hopefully it's slowing things down. I don't want a coffin, I would much rather be cremated as I feel paying to sit in the ground is a waste of money, space and in my case especially, someone could learn about my cancer from my body. I will make videos for my children but I've also set up a private Instagram account for the children that I post messages and memories on for them to look back on when they're older.

kr856 karma

How did your first cancer present itself? Did you think you had a cyst or pink eye or was it obvious something out of the ordinary was happening?

I am hoping your (and everyone's)remaining time is filled with love!

Bling-kofaneye9 karma

Thank you! My eye started to swell, it was pushed forward. My vision was blurred and doubled and I was in a lot of pain with it too. It happened very quickly and when I visited an optician they were very concerned and sent me via my GP for a scan, then I had a biopsy and things progressed quickly from there.

Wavemanns5 karma

Is there anything this community could do to make the rest of your time better?

While I am not in a position to do anything financially, I am tech savvy and willing to spend time at something you may want.

Bling-kofaneye9 karma

A friend of mine made a video of pictures of me and messages from my friends and family and that meant the world to me. I'm not sure what would be an option from reddit, just the kind messages have been wonderful so far. It's been lovely to hear ideas from everyone.

le-fille5 karma

My best friend's father has been fighting cancer for two years now. Yesterday I heard it has returned and it can't be cured. He has two daughters aged 22 and 20 and a wife who all love him dearly. I've known him since I was 7 years old.

I'm going to visit them this Sunday (from a distance, in their garden). What do I do? What don't I do? What do I say and/or ask and what shouldn't I say? They are like family but I don't know how to handle this. I'm hurt myself but I want to be there for them. They've already been through so much..

Bling-kofaneye7 karma

For me I appreciate talking about good memories and old times but I also understand that some people don't like to think about it. It's difficult to say as everyone is different. I like to joke about things but again this is inappropriate for some. I love people sending me photos I didn't know existed but just being there is nice in itself, most people don't know what to say and I expect he finds it difficult to know himself. I'm sorry I can't be more help but it's just a horrible and difficult situation to deal with in any case.

theitdude19874 karma

How are preparing to .... kick the bucket are u panicking are angry at the world or u just calm trying to use every second of it ??

Bling-kofaneye15 karma

I feel calm and grateful to be able to prepare. I have moments of anger and sadness but I don't want to waste my time on these emotions when I could be making the most of the beauty in life and the good times and making happy memories with my family.

magic000083 karma

How do you prioritize your time differently now compare to before you were sick?

Bling-kofaneye3 karma

It's hard with the lockdown and having to isolate and my energy levels are depleted in comparison to before I was unwell but I'm also enjoying feeling more free and making the most of my time with the people that are most important to me.

Ow_b13 karma

Have you got anything on your bucket list?

Also, love your butterfly tattoo on IG - beautiful.

Bling-kofaneye5 karma

Thank you, I'm trying to show it off while I have chance as it was only done in January. Travelling would be top of my list but it's not an option at the moment so I'm just spending time with my parents and children and putting together boxes for them, buying them gifts and putting together photo albums and videos for them to look back on after I'm gone.

NocturnalWaltz1 karma

So sorry to hear that, whish you all the best ♥️ your story and your strength are inspiring to all, to us internet strangers but am sure also to your closer friends, family and kids.

What has helped/is helping you most in terms of acceptance and preparation for death? Religion/ books/meditation/discussions with others?

Bling-kofaneye2 karma

I feel lucky as I know people that have died with no preparation and the fact I can make decisions and let people know my wishes really helps with my peace of mind. I can tell people how I feel, sort legal stuff out and make sure everyone has memories of me which is a blessing and I can prioritise what I would like to do before I die too.

Notagenyus1 karma

I’m sorry this is happening to you. I hope the best for you and your family. My question is, do you have any thoughts about what happens after you die?

Bling-kofaneye2 karma

I'm very open minded about it but it will be interesting to find out really. I don't have any fear about it and feel pretty calm about the whole situation.

argentcove0 karma

Have you tried PEMF or Tumor Treating Fields?

Bling-kofaneye2 karma

I will look into it, I've not heard of this before.

NoneOfUsKnowJackShit-1 karma

I feel for you brother/sister, i'm sorry you got dealt such a shitty hand. Have you looked into the newly discovered resonance frequency treatment that is being developed? If I were you I would call these folks directly and tell them about your dire situation. It's couldn't hurt to check it out my dude/dudette.

Resonance frequency treatment

Bling-kofaneye1 karma

I will look into it, thanks