Our Story

Longtermsurvivor

Hi A Guy,

I too hope you've found the miracle cure for your girlfriend and that it's based on truth - hope not hype.

While I don't buy the claimed 70% success rate, I'm interested in all healing allies including RSO...so if you're up to sharing, I will read along with Zarovka.

You may want to read and post at bcc's RSO/Phoenix Tears topic too https://community.breastcancer.org/forum/79/topics...

And I hope you will continue to take good care of your girlfriend and yourself, following her lead on what she wants to try.

She will likely know when it's time for her body to wind down. I hope you'll support that too. Healing at the end-of-life can be a profound experience for all involved.

Good wishes on your journey, Stephanie

A_Guy

Thanks, Rose. I feel bad for you and your guy. I know what he is going through. It's great that you have him, though, as he is with you all the way. You're right about how guys want to fix things.

I get frustrated that no one else in her circle is in touch with her doctors, questions anything, or otherwise tries to see if there is something that we're forgetting. Standing by and observing isn't much of an option to most guys, I would imagine.

Yes, she is willing to try MMJ. She said that her head wants to live, but her body doesn't. That's both sad and shows that she wants to pull through.

I hear that there is no cure for cancer, bu then you read about Rick Simpson oil and the biochemist Dennis Hill story and wonder: http://www.cureyourowncancer.org/dennis-hills-stor...

One more thing. I bet you and your partner experience mood swings. One minute you feel great, that you can handle anything, and then you're deep in despair. It's awful.

steelrose

A Guy, yes to the mood swings! Mine are partially med induced, and aren't pretty sometimes. My partner gets very frustrated because of all the uncertainty at stage iv… the helplessness. He's an amazing support, truly my energy source, always encouraging me to keep going. He's terrified that I'll slip into "the black hole" as he calls it. But I know that one day my body will not be able to go on. That's where the grace and the peace comes in… for both of us I hope! I don't want to leave him, and I know he doesn't want to be left… it's all so hard but you know this.

I can tell how much you love your girlfriend. She's lucky to have such a wonderful guy by her side!

A_Guy

Well, here's the latest. My girlfriend can now barely get off the couch. She needs help just getting to the bathroom. She hasn't been eating or drinking without throwing up. Even just a few sips of water brings it on. So she is very week. IV nutrition is not an option. Yesterday they took her to the hospital and they removed another 1.5 liters from her abdomen (ascites), and installed a port so that she could do it at home. She has family members literally with her all the time, here from Peru. When I leave for work in the morning, she is now either asleep or can't get up. Just over a week ago she'd go to the window and say goodbye.

We started the MMJ oil a month ago today. The consultant came back on Monday and brought us a new supply - we're now at maximum dosage, It's not cheap. She didn't take any last night, which worries me. And she hasn't been taking it orally at all during the day for the past week or two - just the nighttime dose.

I hope that with the port she'll be able to drain off the fluid and maybe eat or drink a little.

My feeling is that the MMJ is too little, too late. I read the story about the guy with stage 4 lung cancer. They sent him home with two weeks to live, on oxygen. That was several years ago. Now he's fine. Stories like that gave me hope. Now I'm not so sure. A lot of her hair is gone, she hardly talks, she's in a bad mood, and she's like a different person. I feel like I have already lost her. It's tough concentrating at work. We can't even talk on the phone anymore. I e-mail her, not knowing whether she sees them or not.

Thankfully I work half days on Fridays. I hope she does better today.

Thanks for "listening."

Longtermsurvivor

Good morning A Guy,

Thank you so much for your update.

You've been in my loving healing prayers as you face this together.

I too have an indwelling drain for ascites, take off an average of a liter daily for over 9 months. So much easier than going to hospital for outpatient procedures. She may need IV fluids to replace what's being drained, as it's very dehydrating.

Other things that come to mind are:

Meds including MMJ - when they can't be taken orally, sometimes they are given as rectal suppositories. I don't do this myself, but know of someone with a brain tumor who takes MMJ this way. It's unknown territory, but may be worth investigating.

Also, I take morphine and some other drugs by dissolving them in my mouth - this bypasses the liver and is more easily absorbed by my body.

What type of home nursing care does your girlfriend have? Visiting nurse? Palliative care nurse? Home hospice? It's possible to move from one system to another.

I am on hospice and have a hospice team that supports me and the friends and family supporting me. It's been a life saver not to have to coordinate my own care while I'm ill. You all deserve support!

Look into the non-profit hospice agencies in your area. You'll want to find one that works with/for your needs, not their own profit.

I found this slide show on food throughout life to be very informative. I need permission not to eat. Food is love, but at the end-of-life it can be torture to eat.

Food the four letter word in End of Life Care

http://www.slideshare.net/LifeAndDeathMatters/food...

warmest healing wishes for everyone during this difficult time, Stephanie

A_Guy

Thanks, Longtermsurvivor. I appreciate your words. You're really strong. I can't imagine dealing with this as long as you have. I really wish that a miracle happens for you...

A liter a day? Wow, that's a lot! My GF was doing about 1.5 liters a week. They started an IV but then stopped, believing that the drip can cause more fluid buildup. Have you asked about that for yourself?

Sorry, I wan't clear. She has been doing the MMJ oil suppositories for most of the dosage. They started out with a lesser amount and then ramped it up every week. During that time she was also supposed to be doing oil sublingually (under the tongue). She stopped that a week ago, and I'm trying to get her back on it. With MMJ you need to get as much in during the day. She is doing the rectal administration method.

I have done tons of online research, starting with Run From the Cure.

Yes, she's receiving in-home hospice care. I don't like them very much, and I don't like the hospice approach. With them it seems that death is the only goal and option. I like to be a little more positive and allow for the possibility, however remote, that someone could rally.

stagefree

Dear A Guy,

First I should underline the fact that what I m about to write sounds very unlike Stagefree, those who know me will understand what I mean.

Sigh..

I reread your two posts and the previous ones.. Also remember commenting before. Before retiring it was my job to give personal advice, so can take my words as "professional", otherwise I wouldn't be writing them right now.

Sigh.

She most possibly is ready to say bye. Not resisting the strong wind pushing her forward to her next destination. She most probably has guts to face her future, yet might not feel as strong to open up to you..

She most probably feels very deeply your struggle and fear of all associated with what's bern going on.

If you DO love her, concentrate on NOW rather than TOMORROW. Cherish each breath..

Sigh.

This is not easy, but the most loving and supportive approach you can offer her. Yes, there are exceptive cases, but trust the hospice team. Don't be mad, don't expect them to play GOD. Or whatever you believe there is.. They act with experience.. They are by your side to help, not frustrate you. If you feel frustrated, ask yourself if it is them or the fact that you are losing your girlfriend that drives you mad.

Sigh .. Sigh..

Very hard my virtual friend, I know. Each one of us on this thread know what you feel. Help her feel relaxed and peaceful, not afraid of what is beyond. I am not implicating, give up treatment, but do give up all the negative energy building in you cos she shares it and trust me that's yet another burden in her situation. She loves you. Focus on that, try to make her smile.. While telling her she is the one to decide when to do what .. That you support her decision whether or not to take the pills and love her Anyway.

Each breath accompanied with a smile matters and priceless. For both of you.

Hope the best for you all..

Ebru

A_Guy

Stagefree, thank you so much. Your words are comforting. I can see that you know what you're talking about.

Longtermsurvivor, thanks for that slideshow. Sad, but informative.

More later...

+

Longtermsurvivor

Hi A Guy,

Ah, reading more and finding that your girlfriend is quite ill and on hospice, I understand more!

No, sorry, IV fluids won't work when the person is dying and no longer able to eat and drink, because her body can't process fluids or food. Here's something on forcing fluids at end of life https://www.bkbooks.com/blog/forcing-fluids-end-li...

Her body is breaking down, an indication of dying.

Echoing Ebru, Sigh!

The hospice approach isn't to see dying as the only goal. My team is great at reading the signs of my body's progression toward death and giving feedback about how I'm doing. Because my cancer is so slow, this is taking a long time for me. Others have fast cancer and their dying is faster. They know the territory of dying and death, but it's up to me to make my journey at my own rate, in my own way.

A Guy, you mentioned in another post that you're using MMJ with both THC and CBD. The THC will get you high - especially if the body is wasted by disease and not eating and drinking. With the suppositories, it goes directly to the blood stream and can really "knock you out". So can the morphine used to control pain. I wonder if your gf's sleepiness and inability to get up are compounded by not only her advancing disease, but also her meds. Might be worth tweaking them? Talking with hospice? Your MMJ connection?

Another resource that helped me a lot is Barbara Karnes booklet - Gone From My Sight: The Dying Experience. It's a little blue paperback that is often handed out by hospice.

I suggest asking for it and reading it closely. You will learn more about the stages of the dying process and how to support your girlfriend's needs during it.

And yes, she might have a miracle recovery, but she's also entitled to a miracle dying - when it's time for her to go. Please assist her transition by letting her go. It may be your greatest act of love and devotion.

more warm, healing wishes, Stephanie

A_Guy

Thank you all. I realize that I am not the only one going through this. I don't mean to appear selfish. This is new to me, and I feel shattered.

Stephanie, I don't think I responded to your question about RSO. Sorry. It is expensive, and can take months to work. Did you check cureyourowncancer.org? I WISH we had done this a year ago...

Well, they moved her to a hospice center over the weekend. I have been spending a lot of time there, and will be heading back soon. Weekends used to a fun time - errands, relaxing, going out at night. Now, just sadness. She is only semi-conscious. I talk to her over and over, telling her I love her, etc. She sometimes responds, barely. I have been told that she hears me. We used to talk and e-mail 20 times a day. Now I can't talk to her unless I am present, and I don't know if she hears me.

I apologize and tell her how much she means to me. It's almost impossible to concentrate on anything. I can't imagine life without her. And, as I mentioned her mother and aunt are here from Peru. Her ex-husband (like a brother to her) is visiting, but he is based in Miami and Peru. The son (in college) won't have any family here.

I am not religious at all, but I have been praying for a miracle. On the other hand, I can't understand how a higher being can let a truly good person suffer like this, let alone her family and everyone else who cares about her. You read about things like this, but you never really know how painful it is unless you go through it.

I see her things all over the house, and I can't stop crying.

I also know that I will never find anyone like her again. She is that special. She is the best person I have ever known.

Thank you again.

Mab60

a guy, you are giving her the best gift you could ever give by being by her side. Believe me, she knows you are there. My prayers are with both of you. Please take care of yourself the best you can. I know that is hard.

Mary Anne

50sgirl

A Guy,

I know how difficult this is for you, and I have great admiration for the love and support you are providing to your beloved girlfriend. I have no doubt that she feels your presence. I wish we could all be there to help you through this pain. There is no rational explanation for what is happening to your girlfriend and so many others. Life is not fair. Terrible things can happen to good people. I want you to always remember this - a wonderful thing also happened to her. That wonderful thing was meeting you and experiencing such deep and enduring love. Many people never have that.

I will continue to pray for you and your girlfriend. I hope you can feel the love, support, and strength we are all sending your way.

Lynne

Kandy

A guy, I am so sorry for the situation that you are dealing with. I am a believer, although it doesn't make since why things happen I do believe that it is Gods plan. I try to remember that we are all Gods children and we are all on loan here. I am sure that no matter what we say nothing helps. It is heartbreaking to be in that situation when you obviously love her very much. I do believe that she knows you are there and she does hear you. The hearing is the last sense you lose before death. My thoughts and prayers are with you.

Longtermsurvivor

A Guy,

You've done what you can to keep your girlfriend alive.

Please forgive yourself for not getting the results you most desired.

And thank you for doing what you can in service of her and of love now.

I think everyone resonates with stories of love and devotion!

And we offer you our support to help her make her transition - in love and into light.

Holding you both in healing light, A Guy, Stephanie

A_Guy

Thank you all, again, for your comforting, kind, and thoughtful words. This past Thursday Mila decided to stop the cannabis oil. She keep talking about how sick and uncomfortable she felt. She had had no quality of life for the past 2 months.

Saturday she went to the hospice care center. She was barely conscious most of the time. We thought she'd be there for 3 days and return home.

She was almost unrecognizeable. The cancer had ravaged her. It was heartbreaking to see her like that. I told her how much I loved her, that she was the best person in my life, ever, and that I would think of her every day for the rest of my life. On Monday night she moved her head up and down when I asked if she heard me.

We lost her yesterday morning. I am absolutely shattered. Her many friends have been so supportive. She was a remarkable woman and touched so many people in ways that I have never seen before. She knew she didn't have much time left and didn't want to die in my house. That's the kind of person she was. I still can't believe that she had to deal with so much suffering. I don't understand it.

There is a link to a few photos of her, so that you can put a face to this terrible story. https://goo.gl/photos/Qw1y5hUut53ShGiJ9

I will read your posts again. Thank you from the bottom of my heart for your support and encouragement through this terrible time.

Longtermsurvivor

Oh, dear A Guy,

I know you were trying to forestall this day in every human way possible. You tried so very hard to keep her here and in the end had to let her go with love and into her light, her next life.

It's hard to witness the suffering of someone we love so much. We want to relieve their suffering with interventions like the MMJ. And to turn around (miracle) their disease. When that's no longer possible, then sometimes death seems like a mercy to them, though it increases the grief and suffering of their survivors. Suffering is inexplicable - whether one's own or another's. That's what religion has been trying to explain for millennia.

A Guy, please do continue to hold Mila in your heart and in loving memory - from your stories here, she has changed your life!

What better way could you honor her than to take the love you shared into yourself and shine it into the world.

I'm sorry that your picture link didn't work - sometimes pictures are worth thousands of words. I'll look in later to see if it's working.

Holding you in loving healing light, during this tender time, Stephanie

A_Guy

Please try: https://goo.gl/photos/Qw1y5hUut53ShGiJ9

Kandy

My thoughts and prayers are with you. May her memory live in your heart forever.

A_Guy

Stephanie, you have a way with words. Thank you... A few weeks ago she told me that she believe that she was put here to make me a better person. Her friends have told me that she has. Not perfect, but much better than I was.

I meant to tell you more about the MMJ. As your cancer is slow-growing, why not go for it? The idea is to take it under the tongue three times per day, and doubling the dose every week. Then, at night using suppositories, which are also doubled every week until you hit 1 gram per day. If the suppository is only inserted 1 - 1.5", you shouldn't get high.

Also, we think Mila was so low on energy because of the disease and lack of food.

Thank you so much, Kandy. Have you looked into MMJ oil?

Mab60

a guy, I am so very sorry for your loss. You are an incredible supportive boyfriend. So many people go through life and never experience the true love that the two of you had. I agree with Stephanie. I hope in time you will be able to take that love and shine it into the world. What a tribute that would be.

Warm hugs, Mary Anne

steelrose

A Guy,

Please accept my sincere, heartfelt condolences. Your story with Mila was such a beautiful one. Thank you for sharing it with us, and for giving us perspective on what it was like for you. I know it helped me personally to understand what "my guy" is going through.

With love and admiration to you… may your wonderful memories of Mila carry you forward…

Rose.

zarovka

A Guy -

I am so terribly sorry. Mila died surrounded by the people who care for her which is a great blessing and everything she deserved. I see the light in her photos. Carry her light with you and let it shine.

>Z<

stagefree

Dear Guy,

My derpest condolocenses to you and her family. She has finally got freed from suffering.. You are a great partner to have stepped up in her worst days. That's the most valuable thing ever, in a relationship. I am most sure she appreciated that. Hope her memory lives peacefully with you ..

Warmest hugs,

Ebru

A_Guy

The compassion, understanding, and kindness of strangers here is shocking to me. We read about scumbags killing people in movie theaters, schools, and nightclubs, and focus on them. In the meantime, there are people like you - suffering with a scary disease, but willing to help out someone you don't even know.

Thank you from the bottom of my heart. Please take care of yourselves, explore MMJ, Avemar, curcumin, etc. Don't give up. I really hope they find a cure for you, or the disease just goes away for other reasons.

Mila is part of me and always will be. I hope she is able to see that from heaven, or wherever good people like her are after their lives are robbed from them. Her influence here has been profound with everyone she met met, even for a short time. She had that effect.

Please take care.

Kjones13

a guy--I've been reading along. Just wanted to say that I am sorry for your loss. What a special person mila was. She gave to you an amazing gift. And you also gave one to her. May her spirit be with you always.

goodprognosis

A Guy

I just had to add my condolences to those above.

What a wonderful man you are to show such devotion to your beautiful Mila when she needed it most.

May the love you shared with her throughout her life and when her dying came, live on through the rest of your life until you meet her once again.

It may some day be a small comfort to you to know that you had this dying time to share with her. It is not given to everyone to be able to say your goodbyes to those you love the most.

May God bless you always.

GP

A_Guy

Thank you, goodprognosis. All the best to you...