Surprising 2nd opinion

Happy Thanksgiving Stacy and enjoy your family time x

Lee 2 x

It still hasn't metastasized to my upper body yet, which they feel is somewhat of a miracle given the increase in size, so we're moving forward with the surgeries. Honestly I was prepared to hear both outcomes yesterday, and somehow willing to accept either one since both will have an impact on my quality of life moving forward. Even with the results we got, it was still a very emotional day for all of us.

My goal is still the same, I want to enjoy Christmas at home and not be in the hospital, so now it's just an issue with the scheduling and when they can get me in there for the double diversion ostomies. The week of the 15th seems to be what they're trying to schedule, but that might be kind of close in case I'm in the hospital longer. They feel if all goes well with having both ostomies done in mid December without complications with infections, I should be able to have the amputation done in mid to late January at the earliest. If for some reason my ostomies don't get done before Christmas, it just moves these dates further into next year, which also increases the risk of it spreading.

Celebrating Christmas at home with my family, even if I'm in pain recovering from the double diversion surgery means so much to me right now, and everyone understands that. I've lived with so much pain over the last several years, from phantom pain to physical pain, so I like to believe my tolerance is pretty high, but like everyone else I have my limits. I'll update when they give us a firm date for the ostomies. 

~Stacy

Hi Stacy

Thank you for the update when you and your family are still digesting the news. I am glad it has not metastasised to your upper body and the operation is still possible.

I had 2 operations previously and they are considered very big operations but not like the one you will face in January. I was out in 8 days after these operations when they think the stay would be around 2 weeks. I think being younger definitely going to help with the recovery.

Since the operation is to diverse rather than remove, I think there is a very good chance you will be home by Christmas. I have colostomy, the operating site was not painful at all, just fell strange like a plate is sitting on my abdomen. Hopefully you will get use to yours fairly quickly. If you want to ask anything regarding stoma, just fire away.

Sending you lots of hugs Stella x

Dear Stacy, 

You should write with a view to reaching more people - a book, a blog ? You are an amazing young lady who is still willing to help others even though you are facing very difficult challenges

I don't know what young people say nowadays but I salute you with absolute respect

Hi Stacy,  I agree with what both Stella and Patrick say, especially that you are an amazing young lady and I don't know of anyone else who has had so much thrown at them in such a young age. 

I think you have wonderful friends and family who understand so much as to what you're going through. I hope you are able to enjoy your time at home at Christmas with those remarkable family and friends.

Tvman x

Hi Stella,

Thanks for sharing your thoughts on what my recovery timeline might be, hearing that definitely helps put my mind at ease about my goal of being home for Christmas. I know everybody that has these surgeries is different, and have their own challenges to overcome, but I do realize the urgency in moving forward and not waiting. 

I know my diet is going to be different during the recovery, and correct me if I'm wrong, but I doubt I'll be eating much on Christmas, and that's okay as long as I'm home. I've always been a healthy eater, and stayed in good physical shape before my journey with bone cancer began. Did your diet eventually get back to what you ate before the surgery, or are there foods that you still don't eat?

I've watched so many YouTube videos on having a stoma, so I feel like I'm well prepared for what awaits me, but I'm sure there will be a learning process and adjustment period as I get used to the new normal.

~Stacy

Thank you Patrick, 

I was actually encouraged by another bone cancer warrior to start a blog back when my journey first started, but ended up just keeping my journal about my daily life and thoughts instead. I seriously looked into the the blog idea, I was looking at Wordpress and Blogger as a potential platform, and trying to think of a name for it, but I just felt like keeping a private journal would be better for me. Back then part of me was just trying to be strong for my family and friends, and I felt like I could be more open knowing no one else was reading my thoughts as I was still in high school and didn't like the idea on my classmates reading my thoughts. I agree that having an outlet such as a blog or journal is extremely helpful in not keeping everything bottled up inside.

This journey has matured me so fast since then, but I honestly don't knowing how open I will be about this next part of my journey. There's a guy close to my age on YouTube that has the same amputation that I will soon have, his was due to trauma, and he and his girlfriend are very open about everything in their vlogs. I just don't know if I could do that even with a blog format...

I'm sure there might be other young men and women in a similar position to me at some point, and would find value in hearing my perspective, but I feel like I would have to make that decision later on after I see how I've adjusted. I'm sure I'll continue on with my journal, so if I do decide to start one, I can go back and read what I wrote at the time. I've went back and read entries shortly after I was first diagnosed with osteosarcoma, and it's interesting to see what my thoughts were then versus now.

I can make this promise to everyone on here, if I do decide to start a blog I'll share the link on this thread. 

~Stacy

Hi Tvman,

How is Mrs Tvman progressing in her recovery? Hopefully she's getting around a lot easier without being in too much pain.

Thank you for the warm thoughts, hearing that from others brings me comfort. I know that there are people who are older and younger than me in worse condition with even more limited mobility than I will have, so I try not to dwell on how much my life will be changed. When I tell that to people, I think it's easy for people to assume that I haven't come to terms with everything yet given my age, and I truly believe that I have in some way accepted everything and somehow try to see a positive.

My family and friends have supported me through all of it, even when I've been an emotional wreck, they're always right there crying along with me. Celebrating Christmas at home with my family and friends is also for them as much as it is me. 

~Stacy

Hi Stacy

Initially I have not much of an appetite due to the cancer operation. With colostomy I pretty much eat everything like before no change at all. At the start I ate more white food as they are easier to digest. So turkey would be fine, also white rice, potato mash , pasta. Maybe not so much fibres and hard to digest food such as mushrooms. The stoma nurse would able To advise you and they are very good with would care too. 
I prefer coloplast products but there are quite a lot Of choices just ask for samples and find out what is best for you. 

Stella x

Dance04accdfc said:

I seriously looked into the the blog idea

Your thoughts and approach to this are reallly interesting and it's exactly what I went through too.  I thought long and hard about it.  It was essential to me that I retained privacy with my medical details.  What if it all went tits-up and I needed my own space?  My over-riding thought was to help and support others.  So I did it here.  But I didn't tell anyone outside this community.  What I didn't appreciate was the benefit for me.  Writing it down really helped, and I can go back and read my thoughts and take stock of where I was at that time.  It's really useful.  Also people have shared really kind feedback which has been fulfilling.  

You really hit the spot with your perspective on sharing your experiences.  Totally agree.  You can't untell people once it's out there.