Received my final diagnosis today

Hi guys I said in my last post I would make an update post so here u go.

Today went better than I expected parents reaction wise. Unfortunately I wasn’t wrong about my cancer it’s not a nice one at all essentially it’s meta sized I think is the word so basically it’s spread and is considered stage 4 and it can’t be cured it’s also a very rare cancer so it’s new ground for the doctors. I already sort of knew this so it wasn’t a massive shock but it was still a very emotional moment. Right now obviously I’m anxious about the future but I’m relatively calm and think I’ve taken it well. 

Like I said in my previous post I knew it would  be a horrific moment for my parents. My mum cried a lot but what hurt more was my father who just sat there eyes staring at something. Sort of like his soul left his body (I don’t believe in god btw whole other conversation). This was probably the toughest thing I’ve ever had to see in my life. But from this point things get a little better. Still not good but better. 

now we know what cancer I actually have I don’t know the full name but if anyone wants to know I can say but like I said it’s a rare one so you wouldn’t know about it anyway. We know my plan is chemotherapy for the next 6 months so 8 cycles of 3 weeks. When I walked in the consultants room I had this thought in the back of my mind that they were gonna tell me I had weeks left to live. And of course things can change and that scary thought could be turned into a reality. But they are confident that I will finish my 6 months of chemotherapy. So I know I have some time. Well like I said the scary thing is we don’t know but it’s looking likely. From there a lot of it’s gonna be touch and go dependent on the chemotherapy results I guess. I think they said radiotherapy was looking like a more likely but surgery could be an option. Basically we got to wait and find out.

Essentially the way it’s looking it’s very unlikely it can be cured but there could be a chance that it could be held at bay In the future. unfortunately as horrible as it is to hear for me and probably you guys but my time here is essentially going to be cut shorter is what I’ve learned today. Of course I’m scared of this but at the moment I’m relatively calm and I think only time will tell how I’m going to cope with this.

Some positive news let’s get some positivity in this post.
Yesterday I was concerned this would break my parents beyond repair and I can tell you it hasn’t done that. After the consultant thing was over we went straight to a centre for support. My parents organised this the morning before. When I woke up I was going to talk to them about how I wanted support for them as well as me like I said in my previous post. It was great to hear that they both accepted they needed support and took steps I was going to make. I guess I needed a little more faith in my parents. 

The support session was definitely a good thing for them me as well we talked a lot to a lovely women who was really good for like an hour and I think it helped us all. At the time my dad was still in shock like I mentioned before. He had times were he just simply wasn’t in the room mentally staring emptily at nothing which was scary but he did talk about his feelings truthfully. We’ve agreed to go to more support groups we are all keen to do things group relaxation sessions and stuff as a family and different types of support which is great and what I wanted.

The journey home is an hour and at first I was concerned my dad wasn’t going to say a word. My mum was talking to him and me and he was just sort of driving not really answering but as the journey went on he did start to talk more and more I think some of the shock wore off or something which I was grateful for. 

When we got home we chilled out like 30 mins with my nan who had been babysitting my 3 siblings which I don’t even think I’ve mentioned before if anyone here is following my story or something then plot twist 3 new characters
Twins -16 boy and girl
Brother - 13
My nan had already been texted by my parents so knew the rough idea . She obviously wasn’t good but she seemed to be coping ok one thing my mum and also nan are very positive about is the fact that one of my chemo cycles is going to be a clinical trial and the doctor mentioned something about some positron therapy (began with a p don’t quite me on that) or something which dependent on the chemo and how I am could be an option in the future. Realistically the positron thing probably won’t happen but I guess it is a bit of hope of something that could help and also the clinical trial. My mum seems to focus on this clinical trial being a good thing a possible thing that could help me. Essentially from what I know the clinical trial is just a round of chemo
With some things changed to make it more/less effective. Will  this clinical trial have a massive change on me. No I don’t think really but it is giving my mum and my nan positivity is this a good thing? I don’t actually know but I guess maybe with a lot of bad news is a thing she talk about excitedly because well it’s not bad news just sort of neutral. If anything it is bad news because the clinical trials are happening because this cancer is rare so they wanna learn about it but I guess positivity can’t hurt.

Back on track to my parents. Especially my dad now. He’s actually doing better than I thought. Unfortunately I thought the worst so he’s not good in any way shape or form but my dad has transformed from negativity 1 week ago. Scary neutral at the consultant to positivity. He’s viewing things In a realistic way.  And really sort of said it how I kind of think. 

Yes this is *** it’s a horrible thing but he’s thinking positively about appreciating each day. and helping me through this chemo. I think at the hospital he let my cancer kick him to the floor and riddle him with bullet holes. But know I think he’s stood back up. Now I know that cancer is a journey a *** tough journey and he’s probably gonna get kicked down again the same thing is gonna happen to me too. But he stood up today and I’m very happy he did.

My siblings dealt with it pretty much as I expected it obviously was very tough. But my parents did I think as great of a job as you could do and I’m proud. My siblings are all going to get support as well we are really cracking down on that. I want to talk more but this post is already too long I actually need to sleep it’s 1 am that’s bad but I guess I wanted to do this. Sorry my siblings aren’t well developed characters in this story I will fire my writers. But anyway I’ve said preety much most of what I want to say.

Tomorrow is another challenge my 2 best friends we are literally the 3 musketeers. Only know I have a cancer and that it was a bit bad but they don’t know the truth. I plan on telling them tomorrow in person all the details so I will probably not be able to sleep as I will be thinking of ways to tell them. In fact if you made it this far and have any advice about that then I would appreciate it 

Thanks for listening to my story I appreciate it so much.
take care everyone ️

  • I did get to the end of your amazingly courageous post. You must be young, I guess, and are dealing with this in an unbelievably stoic manner. I can't possibly imagine how you feel. You have every right to feel so much anger but your concern for your parents is so admirable and selfless. I hope it went ok telling friends. God bless you and I wish you as much good health as you possibly can have for as long as possible. X

  • Sammy_D

    Hi Sammy ,just read your post and all I can say is what a beautiful heart you have ,going through all this, and your thoughts are with your family and friends,you are obviously a very lovely caring person,putting others feelings first.  I'm so sorry you have got the diagnoses  that you have,but I  think you are a very courageous person from your posts,and what ever treatments are thrown at you ,I believe you will take,and that you will  do all you can ,and live your life the best you can.im in awe of you and your way of thinking .Always here if you need to chst xxx

  • Hello Sammy_D, 

    Thank you for updating us on your diagnosis. I am so sorry to hear that you have been diagnosed with a really rare cancer and that it is stage 4. Would you mind telling us the name of the cancer you have been diagnosed with so we can help you find the right kind of support targeted to your specific cancer? 

    It's great that your parents have already benefited from these support sessions and that they have helped already. I thought I would also give you our nurse helpline if you ever wanted to get in touch with one of our cancer nurses. You can call them on this free number 0808 800 4040 - their line is open Monday to Friday from 9am to 5pm so if you or your parents wanted to talk things through, you are very welcome to give them a ring. 

    I don't know if you have managed to see your friends already and if you have talked to them about everything. I hope it wasn't too hard and emotional for you all and that "the three musketeers" still managed to have a nice time together. 

    Keep strong Sammy_D - we are all here for you anytime you need to talk. 

    Best wishes, 

    Lucie, Cancer Chat Moderator

  • What a courageous human you are, and bless you for wanting your parents to have support in this difficult time for you all.

    Wishing you lots of love and strength of your treatment journey. You're so brave XXX

  • Hey lucie thank you for the words of support I really appreciate it. I've got a Rhabdomyosarcoma I've named him Rhabdy I don't know the full details on it but basically It's in my lower back and it spread into my pelvis and part of my spine into the bone. Or maybe it was bone marrow I can't remember something about the l3 l4 area if that information helps. Talking to my friends went well. Obviously it was a tough emotional conversation and a lot of info for them to take in but after all the serious talk we chilled out and ordered pizza ️ . I've had a few friends round and called a few who've gone back to uni to tell them the news. Obviously it is very hard for them but all of my friends have been ok so far and each time and the conversations have gotten much easier for me emotional wise I guess you kind of get used to it a bit the last call I had I was preety much calm the whole time and didn't cry. I'm actually coping really well so far. My view is basically it is what it is all I can do it is smash this chemotherapy and keep my positive outlook and enjoy every day . My parents are doing better reading a story about this girl called Ellie who also had Rhabdy but now she's in remission has given them a lot of hope. I'm still a bit worried about my dad becasue he's eating less and I can tell he's a bit of a mess right now but I've sort of accepted this. No matter what I do my parents are gonna worry like hell. So I've kind of accepted it's out of my control which has helped me massively with dealing with the scary moments of seeing my parents upset. I'm keeping strong and I'm eating well and things like that. Take care everyone hope u all have a nice day ️

  • Telling friends about a cancer diagnosis can be tough but we're really glad the chats you've been having have gone well and that your parents are in a better headspace after reading about Ellie.

    If you or your parents would like to find out more about Rhabdomyosarcoma just click here and if you have any questions playing on your mind about your diagnosis or upcoming treatment then do give our cancer nurses a call on 0808 800 4040. Their phone lines are open Monday - Friday between 9a.m - 5p.m and will do all they can to help.

    Kind regards,

    Steph, Cancer Chat Moderator

  • Hi Sammy,

    I did find your first post and checked your profile just to see an update! 

    I think you are extremely mature. I am 30 and my mother was diagnosed with cancer last year when I was 29 and it just felt like the world fell down on me.I am also guilty of the eye starring syndrome quite often as I do worry so much about my mother and end up overthinking. But I think the fact that you have aknowledged your situation and talked to them about this will matter a lot to them and will help them accept it as well. And I am saying this because my mother is in denial and it's the most painful thing for me to watch - I feel like if she would aknowledge and be okay with it , I would be okay as well.You are very curageous. 

    I am not sure about your type of cancer but we managed to keep my mom's cancer stable for 3 months with natural supplements and the right nutrition.She did have to stop at some point due to stomach cramps from celery juice and it went downhill very quickly after.Might be worth doing some research and speaking with a naturopath or nutritionist.It also helped my mother with the chemo side effects.

    And be strong! I have heard of people going into remission for a long time with clinical trials.It's good they can offer you that! If you ever need to talk to someone about anything,let me know.I can also tell you more about how I feel as a career for someone with cancer,in case it will help understand your parents thoughts.

     

    Thank you

    Diana