FESTIVAL FUN FOLLOWED BY PAIN

It’s all well and good having loads of fun, being brave, putting on a face around everyone. But the simple fact is it’s almost impossible to do anything now without extreme pain.

I spent yesterday at Reading festival and what a privilege it was, I got to go on main stage, invade the BBC radio one tree house and meet some amazing people.

It’s usually a shock to people who meet me with just how sick I am, it’s that thing of I look well but I’m riddled with tumours. They are very visible now though and causing extreme pain, the worst of the pain in my hips and arm now. Walking is pretty damn hard now and doing anything with my left arm is almost impossible.

One of the saddest things to me is, the experience of a festival used to be one of euphoria and hyperactivity. This time was a sense of sadness, this is likely the last time I will do this.

Now, when I left the festival it was emotional for both me and my brother as we are not even sure we will see eachother again as he heads off on tour around America and Canada. That lead to tears, upset and a certain kind of heartache that I can’t explain. It’s just unimaginable really, that you may never see someone again alive or in a healthy state.

This brings me to getting back to the hotel, I got back and my body decides it was done. It crashed, unadulterated pain in my pelvis, chest, abdomen, legs and arm. To the point I was lying in bed crying with pain, but it was worth it to have the experience I had.

I never know how the pain will affect me and some days are far worse than others, due to pain management and determination I can do the things I do but its not at all easy!

Not easy at all!

This isn’t meant to be a sad post but it’s hard not to be due to the nature of the content, but I hope people understand why I share this side of things so as you know I am not a machine.

Much love and have a glorious day everyone

About PeeWeeToms

So what's the story? Well in 2015 I was diagnosed with a Sarcomatoid Carcinoma. To say the least it was aweful, I have managed to get through three years now with it coming back with vengance 4 times. On the 29th December 2017 I found it had likely spread. This is my dialogue with myself.

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47 Comments on “FESTIVAL FUN FOLLOWED BY PAIN”

  1. *THE BIGGEST HUGS I CAN MUSTER FROM AFAR* In tears here after reating about your tearful farewell with your brown. ❤

    1. Why should you have to endure so much pain. Is there nothing that can be given that will alleviate your pain? I hate to think of you or anyone enduring so much pain.

  2. Glad to hear you are making fun a priority. But be sure to make pain management an equal priority. Your pall care team is there to help

  3. You are a warrior!! I hate that you’re in pain but so glad you got to have your Reading experience! Still praying for you! Sending much love!!!💜💜💜💜💜

    1. You are a real tropper Dan and we all love you so much! You are a great inspiration to all of us and what it means to fight for what we believe in! You have already left your mark and legacy to the World! You will forever remain in our thoughts and hearts! You are so strong and brave! I know that you will never give up until you take your last breath! God Bless You and Gods speed my friend!

  4. You are a warrior!!! Hugs and healing vibes sent to you from America. You are loved and cared for by so many. Keep fighting as long as you can my friend!!!

  5. Dan, thank you for continuing to share your story so openly and honestly. You are truly an inspiration in your approach to life and everything you have faced and continue to face. We are all cheering you on and sending lots of virtual hugs <3

  6. I watched my Dad go through it last year, so I understand. I’m happy about you being able to go to the festival, but I’m sad that you’re going through what you are. I’m also going through that same sense of helplessness that I did last year, where you fantasize about being some sort of healer and being able to magically heal someone by putting your hands on them. But then reality slaps you and you realize that you can’t do a damn thing to change anything. It’s a very helpless feeling. I understand that your family are living on the edge of their seat, as we were a year ago. When a loved one has cancer, the entire family goes through it alongside them. It’s a very difficult thing. Cancer is a real bitch. *HUGS* to you, dear Dan, and to your family as well.

  7. It’s heartaching to hear how you feel and yet a reality that you share with us, in sickness and in health so to speak ;). It’s strange, me i am addicted to opiates since ca 10 years, and i have thought about my struggle, what i call a struggle, while thinking of you and your fight. I feel almost damn ashamed, it shows me also what kind of man you are. I honestly don’t think i would have it in me to break through to joy and happiness if i‘d be in your shoes, i feel quite the snowflake, i‘d stumble in your footsteps. It gives me to think about, a lot. I think the waves of your waters affects a lot of people in a lot of ways. I am thankful for this, also for the in-your-face truth of the matter of you explaining what is really happening, on a personal level, like saying goodbye this time to your brother, ouch! It’s a cliche to say Make the most out of the time we have, we never know, but it’s damn right, and i am damn happy for you, however long you have left, to have experienced the deep, deep, true, true things. Many most of us live a whole long life only scratching the surface. I wish you a lovely day too! ⭐️⭐️⭐️⭐️⭐️

  8. I came upon your YouTube channel about two months ago and have been saddened as you have shared what’s been happening. The fact that you continue to share through what must be agonizing pain….I don’t know how you do it, Your determination to keep at it, there are no words “inspirational” isn’t enough. I hope you’re able to manage your pain and enjoy every second that you can. Huge hugs to you and all the special people around you!!

  9. I had clicked the ‘like’ as a gesture of support for you. I removed my ‘like’ because I do not support the cancer that is making your life a living hell right now! I DO support the beautiful living soul you ARE! Much love (and tears) + prayers for you Dan.💗

  10. Words seem meaningless. I just wish there was something we could all do.

    From somebody who will never meet you, just know that you’ve touched my life and I’m doing nothing but hoping and praying for you.

    Much, much love

    -Jason

  11. @PeeWeeToms

    There is one thing which all serious health issues have in common and that is when sufferers do not accept their physical and emotional limits they are actively contributing to their own rapid worsening.

    Pain is an extremely negative factor in any healing process and for that very reason doctors need to induce comas in patients plus strong pain killers, all of course under supervision. Even after a relatively harmless sickness some restful days do a power of good.

    For goodness sake, give your body a chance to recover. And please talk this over with your doctors soon! For all of the things that went wrong in proper early diagnosis, there must have been a fair number of skilled doctors and nursing staff who did their best to give you the chance to live on. Not forgetting your wonderful family, friends and supporters.

    Best wishes for your weeks and months to come.

  12. So sorry Dan . Prayers with you and your family. Much love to you and your loved ones. ta ta buh- bye!!! ♥♥ -Terri from Texas , USA.

  13. Heartache also as I read this. You are a fighter tho that amazes me daily. Don’t count on not seeing your bro ever again. You are one dude that creates his own magic just being Dan!

  14. I wrote a loooong, too long perhaps, comment here but it didn’t work, so i will try again. I want to say that through watching and taking part in your immense struggle of survival, i think a lot about my struggle as a heroin addict since 15 years, and i feel somewhat ashamed. While one man struggles with wanting to stay inside his life another tries to escape it. So it feels kind of unthankful. Anyways i am thankful for your input in my life and i am sure you leave your mark in all of our lives in different ways. It’s ironic, some prople spend a long lifetime and still only scratches the surface of the deep real stuff that you are and experience. Sometimes it’s not about the time in hours and days we live, but about the saturation, the radiance and the vibrancy. I know, they are only words and no comfort for you, i know you want more time, and it’s not fair. I still hope for a miracle for you, and from me more of the stuff of You, so i‘ll fix to get out before i wasted my chances. Thanks Dan, for the waves you sent myways.

  15. I’m so sorry Daniel that this awful pain is your new reality. Every single one of us hope that your pain can be managed while you are enjoying life to the fullest. Saying goodbye to your brother must have been almost unbearable… and I am so sorry for that! We are praying for you and loving you from afar. You are constantly on my mind with hopes for the very best for you and your family. I hope the pain feels better soon. Lots of love from California!!!

  16. You are such a brave man.
    Hugs and prayers sent to you.
    I guess you could say “you wear it well”
    I have been told that..lol..implying that they You cant tell your in pain/you have to tell someone that you are.

  17. Glad you are real!!! People need to see the warrior side but also the painful side, so they know how to care for and love others with cancer properly. So we can stop saying, “you don’t look like you have cancer”. So that people with the pain, with the same fears and reality as you have, can understand that they are not alone.
    I am ridiculously proud of you in this journey and how you’ve been so bloody transparent. God bless you for being real. God bless you for putting others in front so often.
    You are a beautiful soul and I am personally grateful for you allowing me on this journey with you. You are in my thoughts and prayers daily.
    Warrior on.
    God bless you.
    Mjnspidey

  18. Dear Brother Dan, as always I’m Thankful to YOU for being vulnerable and putting yourself out there for us all to see your reality. But also your loving caring heart for your family & friends, and all the people by the thousands that are following you and who Love you. We all want the best for you Dan. I will be at Matts show in Oct in San Francisco at the Connecticut Yankee. I sure hope I can meet him in person, introduce myself and give him a hug which will be the closest thing to hugging you. You’re awesome Dan, and I hope you can rest comfortably! Cheers, Rick

  19. I’m glad you got to see your brother and have a great experience. Saying goodbye to someone is never easy, but I’m sure you both will be glad you got the chance to even if it’s the last time. I wish you didn’t have to go through this Dan.

  20. Well when it is time to past which I hope is longer then you expect. But try not to look at it as a ending but a beginning, you never know what’s on the other side, but I can say that when Steve jobs passed all he was able to say was “WOW” over and over again this body we are in is just a temporary experience our souls is what lives on.. so I’m hoping that what ever you find on the other side is way better then this and you will feel nothing but love where ever that other side is. But till that day enjoy this life and just get ready cause I truly believe you in for a experience that will make this like seem merely like a short dream…

  21. Dan I am so glad you anjoyed festival. I understand you how painfull it is. Myself I am leaving with excruciat pain. Do your best to get thing under control to have quality of life. Lots love

  22. It made me sad to read about your brother going on tour and maybe not getting to see you but I’m very happy for you that you had a good time at the festival despite your pain. Love you Dan!❤️

  23. oh Dan, what I wouldn’t give to help you. I am glad you had fun, but the end was heartbreaking. I hope pain management can make it more manageable. Still cheering for you and sending love. Joan Sisson

  24. From Montana I salute you. Last November my husband by chance discovered he was in early stages of Lung Cancer The Cancer Center chose treatments from a very small box of cures. Now he is dying under Hospice Care from his condition I found you to late for our needs.You pull potential ideas from your genius Pandora box of life saving ideas and are truly an inspiration. DON’T GIVE UP!! We love you and look forward to your daily posts.

  25. You have inspired me more than you could know!! I read this post with an ache in my heart for you, but I was mostly feeling inspired by your spirit. Even though you are sick and in excruciating pain, you keep on keeping on! This makes me so happy for you, and it also makes me re-think how I am living my own life, which is free of illness (but much pain). How many times have I passed at having fun because of pain? When I reach the end of life, will I look back and be thankful that I stayed home & safe? Or do I want to live my life like PeeWeeToms??? Giving it everything I have and not letting pain hold me back. I can’t imagine the pain you are in, and my heart goes out to you for your suffering. Just know that you have inspired more people than you know. Many of us don’t post, but we are reading, we are watching, and we are learning from you. You are making a mark in this world. The world is a better place for having you in it.
    I’m sending much love to you and your family as you move through your journey.
    Thank you for documenting this journey to help others.
    Victoria Severinski
    ~Canada~

  26. Perez Hilton did a vlog about you. I just saw it today. I’m not sure if it was new, but he feels like everyone else who follows you. You are an inspiration and an amazing young man.Glad you had a griat day (even if you had to pay a price for it) I am a chronic pain patient and I have to weigh everything like that. Is what I want to do worth the pain it will surely cause? One great day can take me out for 3 or 4 days afterward. It’s tough living like that and you are obviously hurt a lot more than me. I am in awe at your strength and determination.

  27. Dan you truly are most courageous. Thank you for your candour, ironically your story has hèlped me to understand my late father’s own journey with cancer and why he did the things he did. He could not articulate it in the way you have. Your family must be so proud watching you love you diagnosis your way.

  28. Dan would removing the tumors from your chest and back give you more time? I hate seeing you suffer in so much pain. Have they given you a time frame of about how much longer you have? I know how hard this has to be on your family and I know you have had a long fight. Sending prayers and love from Tulsa, Oklahoma. Ken Williamson

  29. Hello my friend,

    Please hang in there. You have so many fans who loves you dearly and support you! Whatever happens well be there with you every step of the way ! Love and Prayers 🙏❤️🙏

  30. Praying for you every single day. I can’t imagine the pain, nor can I even begin to understand how difficult it was to say goodbye to your brother. You’re so brave, Dan.

  31. Dude I’m rooting so much for you. I’m a 32 years old computer developer as well, a couple days ago I was in bed thinking that if I could I would love to heal you, physically and mentally, because I can only imagine the the damage this ordeal is may be causing to your mind.

    Much love from Brazil.

  32. I’m so sorry you’re having to go through this. I found you through following Emily Hayward-Hasan who, sadly, I didn’t get to know until after she’d passed away. I can’t imagine how hard life must be for you or how you keep going with the pain you’re in constantly but you’re such a hero. Keep up the fight! Lots of love x

  33. Huge damn hug Dan from a French guy living in Prague. You’re so damn strong and such and an example. For people suffering but I also think for people who are not used to that. Your impact here is so huge. People can live for 90 years old but they will never bring so much things to this world as you already did. I’m sorry, I don’t say that often, but you’re a damn hero. Trust me, I know about this cancer issue…

  34. Hi…I started following you recently. Your positivity is contageous. I am in California near Disneyland. I am a christian single gal and i posted this on facebook, and my singles christian facebook closed group. I am not the preaching type normally, however the following comes with love.

    My mom recently had 2 brain surgeries and got large tumor out. Fortunately, it wasnt cancer. Im simply going to say i dont know if you know Jesus but i hope you do. Without you knowing, he has helped you this far to have the amazing spunk, and personality. If you dont know him, i encourage you to accept him as your savior. By grace, he will take you to live eternally in heaven whenever your time comes. He loves you like no other.

    You simply have to tell him you believe he is your savior, and accept him in your heart. You dont have to earn heaven. Just accept jesus. Here is a prayer you can say if you havent already, and you are guaranteed a ticket in. The only vetting required is to believe he is your savior. Here is a prayer im writing off the cuff.

    ” Jesus, I want you as my savior. I believe you forgive all my sins. I accept your love, and will allow you to comfort me now, and eternally. Thank you Jesus. Also, Jesus, it would be great if you could help me with all the pain I have now physically, and emotionally. Thank you jesus.”

    If you believe that Jesus is your Savior, or you just accepted him into your life right now, bless you Peeweetom. I am praying for your pain.

    Cheryl..Orange County, California 54

  35. I must tell you (and oven know youve heard it before) you inspire me. I do a cancer benefit ever year and this year has been the most difficult year ever. Ive thought of quitting- do to your determination those users benefits will be held 9/22/18. I can not thank you enough for showing me that difficulties just give is diffrent paths. The “Gilda’s Motorcycle Run and concert” in Levittown Pa will go on. I will
    Forever carry
    YOu in my heart

  36. Youve started this journey and unfortunately it does come with hard days but hopefully you get the pain under control !! People follow you cause they want to know the good ,the bad and the down right ugly !!

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