Hi Sarah,

It sounds as if you have had a tough time since the first day you were put on this earth. There are many people on this site who have lived well past their predicted time, but they’re obviously not ready to go yet and, I’m sure that you’re not either. I’m afraid that I know very little about GIST and even less about BLUE, but I hope that this becomes available in your area soon.

I am so glad to hear that your art is inspired by how you feel. It is also good to hear that you are close to your mom. We all need someone to confide in and, someone who can support us in our darker days. If it is of any consolation to you, it is not only cancer that people shy away from. They tend to shy away from many illnesses, so we have to become that little bit stronger in ourselves to overcome this.

I have had a lot of side-effects to my treatment for 2 bouts of breast cancer, but I wouldn’t change a thing if I had to go through it all again. In 1997 I stopped breathing whilst under anaesthetic for an operation. I was revived and brought back from the other side. Twenty years on I am still here and, I fear that I still have more damage to do before I will be let go. In those 20 years each day has been a bonus and I hope and pray that we will both be here for many more years to come.

Please keep in touch and let us know what you decide – gout is treatable and seems a small price to pay if immunotherapy can treat this. Remember that there is no guarantee that you will get these side-effects. You might just sail through your treatment.

We are always here for you whenever you feel like talking.

Kind regards,

Jolamine xx

No longer new here:

To give u an update, Blue has not come to Washington is is not planning to. I have decided to get off the chemo and it has been almost one year off treatment. I have a slow growing cancer so I’m doing all right on the seven tumors growing inside me. I am currently on hospice care around the clock and know that my time will come soon because my body keeps shutting down. I am trying to have the most positive outlook but it is hard. Metastic cancer and having that for 20 years now is rough and the things I have been thru and have seen are rough. I know others have gone through much worse but I’m hanging in there as long as I can. I have a mother who doesn’t want to bury her youngest and a family unwilling to let me go. I’m in so much pain that there are days where I wish I could be let free and where God would take my hand and bring me to Him painfree.

Sarah

Hi seapalmers so sorry for you deciding you've had enough I can understand. You've been fighting it a long time. I cannot say you've had a good time. But being artistic must have helped. Something you can consontrate on I know that helps a lot. Hope things going as you planned. Best wishes. 

Billy 

Hi Sarah. .

Well think you have a few buddies on here ... it's a shame illness scares people ... we could all be there .. my great niece , who was the most beautiful baby I've ever seen .. l was working on maternity when she was born .. was diagnosed with cystic fibrosis... she was given maybe till she reached 10 ... she did .. then told not till teens ... then 20s ... she is just like you pushing those boundaries .. she even had a little girl of her own .. but what she's gone through in life is unthinkable to how she keeps going .. she's now in London waiting for a heart kidney lung transplant ... 

But you two hold on .. May you always push those boundaries they give you .. you are both beautiful inside and out ... sending you a vertual hug. .. Chrissie

I am extremely lucky and have been able to do a lot with my artwork at such a young age. I have had my artwork on display at a local coffee shop for a month, sold braceltes in an expensive shopping area for over two years, got to sell artwork in more than four shows, and got to teach a bunch of people my artwork techniques. I am truly lucky and blessed. I still make artwork and give it to family members so that my artwork with live on.

Sarah

Hi there ...

I've tried to accept your friend request, but it won't let me ... I've had this happen before but thought they'd sorted it ... Will try later and see if I can send you one ...

Would love to be a vertual buddy ... Chrissie xx

Hi Sarah,

Twenty years seems a long time to have a metatastised cancer, but I can understand how frightened you feel. I can also appreciate how your mother feels. No parent wants to bury a child. I am glad to hear that you have the support of family and friends.

I am glad that your artwork has opened up so many possibilities for you and that, via this medium, you can leave mementos for family and friends.

Chemo is not for everyone and, you seem to have gone through a lot throughout the years.  This is a tremendous strain to face at only 35. I sincerely hope that your cancer remains slow growing and, that you get your wish to go painlessly.

Is there nothing more that your doctors can do to ease your pain at present? They should be able to control this, if nothing else.

Do please keep in contact and let us know how you are getting on. We are always here for you.

Kind regards,

Jolamine xx

I have gone thru major surgery at the beginning and was told that unless my tumors cause problems with my organs, they will no longer operate there. Basically they have been keeping my cancer stabile ish...  and keeping me somewhat comfortable. I have been on so many chemo study trials, interveinous chemo, chemo pills, weird experiments from the doctors— high dosages of acutane, surgery, I was on kytruda, and radiation. In twenty years it is hard to remember everything I’ve gone thru but in the other hand, not hard to forget certain events. 

While in Hospice, I am checked twice a week to see how I am doing. I haven’t had a blood test or an mri in five months or better. My tumors are growing because I notice the pain getting worse. I have a lot of low energy days but try to fight thru them anyway. I am on a lot of meds to keep me “happy” and somewhat painfree. I wish there was a pill that would take away all the pain and I could feel normal and have energy to do stuff. If there wasn’t that, then one where I can sleep comfortable in a real bed for hours and just sleep and be comfortable with no worries...I sleep in my recliner because of the pain.

My mom takes me on trips to make me feel better and to have fun. We’ve been on so many this year so far and we never do that...My family is trying to make me comfortable and to take me places I would like to go and I appreciate that because I know that must be expensive for them. 

Sarah