PAIN – HOSPICES – CONTROL

It’s hard to put into words the sheer pain I am now in. The amount of tumours has vastly grown along with the areas they are in. Where before I was having to make weekly visits to the hospice and see them to manage my pain I have seen them three times this week now.

It’s important to me to get this pain management right now as I will show in a vlog later that pain is now a huge issue and bringing me great sadness. When I actually want to try be happy and enjoy my life.

What’s upsetting me most about it is my lack of ability to move like I was able to two weeks ago and enjoy that freedom I felt on my skateboard when I was blasting down the promenade late at night or purposely through tourists.

The change that two weeks has made is drastic and it’s all been out of my control, I needed to fix my biliary duct as I was scarily told I would slip into a coma at anytime and no attempt would be made now to revive me. That I believe still stands, if I slip and fade now no one will revive me.

I have been fighting this so hard for so long, solidly as well and in the open with no one on the outside of my close knit family and friend knowing just how bad things are.

The time has come to switch off the brave face and switch over to the I am a realist, a researcher, a social changer and I am going to show the bad things as well! There is nothing nice about what’s happening and very rarely anything positive that happens.

My girlfriend Becky has stood by me in the shadows for a while and I think it’s only fair she gets recognition for being there for me as well while I was in hospital for almost 3 weeks.

She did not falter, she did not leave my side and held my hand through some of the most troubling and worrying times. Not only that my mother came and spent the two weeks with me as well and endured my tirades, drug induced anger, spats and lack of ability to even speak or move.

This is what true love is, that love I have spoken of in the past. That unwavering and mountain moving love that means nothing is in the way when you know you have an end goal.

My goals are now small, day by day, but they are however mini triumphs and every day is a blessing even if it is scary as hell to live it.

I spoke yesterday to my doctor’s and said that the heart wrenching thing for me is I searched for months for answers and spent a small fortune on finding answers and nothing has worked, for me it wasn’t to cure me but was to try have one day free of it.

Free of the pain, free of the worry and concerns I now have. I never managed to get that and I certainly won’t get that now.

My care free attitude has now had to change into a much more caring attitude, not just to support me but those around me. But I will say this, though my body may not function and maybe playing me up with fatigue, pain, swelling, failing limbs and the rest I am still going! I am still fighting forward to get to another day!

Nothing gives me greater joy than waking up cuddled up to someone who makes me smile like crazy and know they are rooting for me along with the rest of the world!

I could write for days on this one but don’t have time. But know this I will be releasing my bucket list soon and reasons why I am doing it as I don’t have long left and I want to achieve a few things I haven’t been able to yet.

Much love as always everyone and ta-ta buh-bye

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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21 Comments on “PAIN – HOSPICES – CONTROL”

  1. I am so happy that you have found the love that you speak of, its beautiful. You are beautiful, your life has been beautiful, even in the darkest hour there is beauty in how you have always crawled out of the darkness. Thank you for sharing.

  2. Dan you are showing the world how to be a real super hero. I can’t express how big my admiration for you is, as well as for your beautiful family and friends for sharing such a personal struggle. Life can be cruel but you have shown us how to persevere with dignity and humor! All I can offer is my heartfelt love to you and gratitude to your precious parents for raising such an incredible young man! xoxoxoxoxo

  3. This is just heartbreaking. I can’t imagine since I’m not in your shoes. It’s so unfair that so many young people and children suffer with cancer, plus so many types. Someday I hope they find a cure or vaccine as like polio. You are in my prayers.

  4. I have been following your blog for a while now . You are truly a very remarkable , resilient and inspirational young man .. I take my hat off to you !! You are in my thoughts and prayers and remember stay strong …. Nolo timere … Keith

  5. I also have cancer, metatized colon cancer to be exact. Thank you for sharing the good and the bad. I too live each day to enjoy as much as possible. I have had my dealings with pain and know how hard it is to enjoy anything when the pain doesn’t allow you even think. You go and do as much as you can and continue to be proud of your body because just like you your body is strong and wonderful. Much love Dan. Sincrely, Reina from Miami, FL. If you ever want to talk to another cancer fighter email me at reinab70@ gmail.com we need to support each other. I am have a blog its iamreinablog@ wordpress.com

  6. Dan is there anything we can do for you..I know Iโ€™m just faceless words …I feel so helpless….if thereโ€™s any thing …x

  7. You’re an inspiration! And your fight against cancer invoked the hearts of many people all around the world.You are brave and you are strong. Your unwavering positivity gave me a more caring outlook on life, and I promise you I will live it to the fullest. Last thing I want to say is thank you for creating your YouTube channel to spread awareness about cancer. Your videos will help many many many people in the present and future. You will not be forgotten by anyone!

  8. I’m so heart broken to read this. No-one should have to suffer in this way as especially when they have an unwavering will to live and an inhuman ability to rise above the bad.

    I’ve been watching your vlogs for some time now. My fiance (now husband) was fighting his own aggressive cancer and I was struggling to stay in a positive headspace for him. Your videos gave me comfort and laughter and made me see that there is always a light in the dark. You just have to look for it.

    We were beginning to feel we had run out of options. Standard treatments, trials and god knows what else didn’t work. We started to have the hard conversations and plan for the “it’s and buts” that were becoming more likely. I don’t think I’d of made it through those without your voice in the back of my head, telling me to live each day and take it a day at a time. You were and are a huge support to both of us and I will be forever grateful to you for that.

    I hope you find some way to get comfort and be able to live as pain free as possible so you may enjoy your time in this earth. My heart goes out to you, Becky and your family.

    Laura โ˜† laurahasablog.co.uk

  9. My heart is broken for you. I wish you peace and to be pain free. I have been following you. There were so many ups and downs. I will continue to pray for you and your family. I thank Becky and your Mom and whoever else helps you emotionally and physically for being there for you. God bless them. Dan, you are one hell of a guy. I wish I could meet you and shake your hand. I look at each day differently now. I try not to let the trials and tribulations of life get to me.

  10. Hey Dan,

    There is nothing I can say that hasn’t been said 100 times before. I just really wanted to say and I’m sure that all your followers will be in agreement, if any of us can help you and your family in any way, no matter what it is, just let us know.

    What an awesome lady your mum must be, to have raised an amazing son like you, and as devastated as she will be, she will also be very very proud of you.

    I lost my partner a few years back to a glioblastoma five months after diagnosis aged 40 and the only thing I can tell you to do, is not to waste any time or try to save energy for tmro, use it all to make the most of today. You can deal with tmro when it comes.

    I really hope that you manage to get a decent level of pain control established, ask for a Fentanyl patch to wear if you aren’t already. My gran had one at the end of life and found this to be helpful, with oral drugs used for breakthrough pain, but I’m hardly an expert.

    Maybe you should also make your wonderful GF, your wife?

    Sending you all loads of love ๐Ÿ’•

  11. Sounds like you have a beautiful group of people supporting and loving you! Know that lots of strangers, including myself, support and love you. Wishing you ease from pain.

  12. Iโ€™m so glad you have such loving people by your side during this journey, your beautiful family, girlfriend & friends. You just do what feels right for you & enjoy as much time with these beautiful people. You are such a beautiful soul & I really admire your fighting spirit. You are a true inspiration.
    Much Love
    Michelle

  13. Saturday, August 24th, 2018,
    Quebec City, Province of Quebec, Canada, 21h00

    Dear Daniel,

    Even if it is a tiny and probably just a wee bit point in your day, me friends and I would like to tell you that your are and impressive and huge example of determination and courage. You blow away all of us and, as an image of course, we would like to hug you and tell how we all love you.

    I do not know why in our life we often discover the real things only when all going bad but, anyways, you must know that your courage, your texts/writing, your love for the life in general have had, still have and will continue to have a huge impact in the life of many many many people. For that, thank you very much Daniel.

    It could be nice to send you an invitation to come here and visit us, have a glass of wine and also have huge meals as French people love to prepare and offer to their visitors (Quebec is a French population / 8M people / part of Canada but having is own Goverment, laws, etc.), but it is not possible. Too bad we have just known you recentlyโ€ฆ

    We can imagine you skating along the sea in your city as you mentioned in yours posts. It is probably the perfect image of your freedom and your love for the life.

    As you mentioned in your latest text, just spend minute by minute and day by day, surrounded by your girlfriend, mother ans all others who love you. We give you a HUGE hug and kiss Daniel.

    (Note : French is the main language of the writer of this text, and also for his his friends too, but we hope this English translation is understandable even if we probably made plenty errors… We would to apologize for that but we hope that the essential is there for Daniel.)

  14. We totally understand you have to do what u need. – itโ€™s ur own time now… Thankyou so much for sharing- it will help a lot of people! – including me. Your body may fail and go- but ur spirit will last forever!!!!! And WHAT a spirit!!!!! Xo

  15. Dan, you are a very special man. I so admire your courage and your ability to put a smile on even though you’re not really feeling well. I wish I could take this awful disease from you. For what it’s worth please know that I have so much love and respect for you. Again if I could take it away from you I would gladly do it. Please accept a warm hug from me and one for your terrific family. Love you very much. God bless you always.

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