Scanxiety tips and tricks

@gingerw , it does help, but the fear of losing her is overwelming. Her cancer' s path so far is very scary. Nobody has answers. Chondrosarcoma is not supposed to be in young women. It is not supposed to be so aggressive. It is not supposed to metastasize so quickly. Nobody has answers. The path forward is to cut any growths out. There is no cure. She turned 24 on 10 May! I have been with her to all the serious doctors appointments, where the verdicts were given. Her dad will be there for her next CT on 3 May. She has a strong loving support group. She/ us manage. It is difficult to say what I think and feel. I tend to draw back from everyone because I don't know, I don't have answers to anyones questions. I am her mother, I should know what to do, but I don't.

@elmarie @gingerw

A cancer diagnosis is scary but especially a rare aggressive one at such a young age. My appendix cancer is aggressive and still counted as rare but there have been major breakthroughs in treatment and HIPEC for example was one. I hope the same goes with your daughter 🙏

Going to appointments with your daughter is her showing massive trust in you and how you handle the information. It’s scary for you both and not freaking out helps her stay focussed on information gathering and making the treatment plan with her team.

It’s difficult for those who love us to know what to say and do. Follow your daughter’s lead. If she doesn’t want to talk don’t push but if she does the main thing is LISTEN truly listen. Not try to fix.

I too relied on 2 very close friends more than others n my huge support team, partly because they both have severe lupus (and could help with my diet and mindfulness etc which they both practice). Partly because I didn’t want my father to worry - he knew I’d tell him important things. He was so stoical he was my bedrock. Quiet, strong and caring under me.

It’s hard finding the balance. Cancer is front and centre in some ways (medical appointments, treatments, side effects, new normal physically etc). Yet also detaching from all that and trying to enjoy what’s there in life to grab each day outside cancer is also so important. I had breakfast with my father every Saturday morning if I wasn’t ill and that became our special time. He’d simply ask how I was and left it to me to share if I wanted to. If I didn’t he never pushed and just reminded me he was there whatever I needed. We’d then just chat and go for an amble around the mall people watching and looking in windows. It’s finding the sweet spot. It’s different for everyone.

@isadora2021 @gingerw Thank you so much for your kind words. My mom had pulmonary hypertension when nothing was really known about the illness and obviously no treatment. I lost her when I was 40. She never wanted to talk about her death and we respected that. We had no regrets about her decision, she always said she was going to attend my daughters wedding( her namesake, Marguerite) even though she was barely 2 when my mom passed away. Now my Marguerite also doesn't want to discuss her cancer and I must respect that. It is so difficult to go on as if everything is normal. There is no treatment to slow it down. The only treatment is to cut it out. Hopefully new treatments will become available! She can start bending her knee today( 6 weeks after second prosthesis replacement) We stay in South Africa and she is with the best Orthopaedic Oncologist and his team in Cape Town. Her dad is a Neurosurgeon and I am a Pharmacist and it makes things worse not being able to help our own daughter. But Prof Hosking is world renowned and we know she is in the best hands. We trust him completely. And prayers help. I have never spoken so much to God! You two are so kind and courageous. Thank you for you kindness. I have told my daughter there is a special truth cancer patients speak. No sugar coating and 100% kind and honest. I appreciate that🥰

@elmarie Please, please do not beat yourself up! As her mother, you love her and want what's best for her. I certainly would not expect you to know what to do, know all about her particular cancer! I wouldn't be surprised to hear both you and your husband have tapped friends and colleagues within your medical community, on how to manage all of this. Perhaps you have access to an oncological social worker who may be able to help you navigate not only your daughter's situation, but your own coping mechanisms. And your daughter might benefit from that same social worker.

None of us is prepared for a cancer diagnosis, whether in ourselves, a family member, of someone we care about. How are you doing today, how is your husband doing, and how is your daughter doing?

Sending gentle hugs,
Ginger

Hi @gingerw, yes, we do have access, but nobody has seen a patient's chondrosarcoma behave this way. Today was better after talking about my frustrations and fear. She slept the whole day until I came back from work. Her way of coping. How are you doing? What is your favourite thing to do? Thanks for listening!

@elmarie Gosh, perhaps her medical team will be able to reach out to fellow experts internationally to get their input? I have a complicated health situation, and my medical team has been open about speaking to others as we navigate this journey.

Sleeping/resting can certainly help you recharge. Be careful it doesn't lead to disinterest in things.

I am doing okay, thank you for asking. Daily dialysis while on treatment for blood cancer, can be very taxing. Each day there is a list of things I would like to accomplish, but have learned to be forgiving to myself if my energy level or attention span doesn't let me do that list! This year I am going to try to grow some wildflowers from seed, and am anxious to see if that will work out. Other than that, my favorite things to do involve being creative somehow.
Ginger