Scanxiety tips and tricks

@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 @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.

@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 Letting your daughter know she can talk to you at any time about any part of her cancer journey will be huge. Wait for prompts like, "what should I do/what would you do if...". Acknowledge the trepidation and fear she is going through, let her know you are there for her in whatever way she wants/needs. Perhaps starting a conversation with "It must be scary/ offputting to [fill in the blank] ..." Be realistic. Like you said, she is so much more than her cancer! But face it, right now it kinda has to be center stage as you all learn to address it.

In looking at your profile and other comments, your daughter's cancer seems to be aggressive. So, it behooves you both to get as much information as you can, and be ready to battle! There are some great advances in medical treatments, and don't be afraid to step up and ask the doctors for their thoughts and opinions. If she is okay with you accompanying her to appointments, be sure you take notes, write down questions ahead of time. That's a great way to show support/care and also get information!

Does this help address your concerns?
Ginger

Thank you eLmarie. I have a Nutritionist on my caner team. We talk every three month about my Nutrition. She's very helpful. I focus on what type of food I eat, fruits/veggies, + proteins. We tend avoid supplements because she analysis everything I eat at the chemical by blood labs level. She either recommends food to counter balance my labs, occasional she will recommend s subelement like Zinc, or Vitamin D.

Thank you for caring, and much caring/prayers from me to you and your daughter.

Good morning @proftom2 , you sound very kind. I have read somewhere that we must not call cancer survivors strong, we must rather compliment them on the way they manage their new reality. My daughter has cancer and her 2nd CT is in June. "Detect and Destroy" chemo and radiation are not effective for chondrosarcoma. How did you change your diet? Do you supplement your good wholesome food?

Good morning @gingerw and @isadora2021. We are starting our 4 monthly journey( 2nd scan in June) My daughter manages her cancer, but doesn't really want to talk about it. She is 24. Do you have suggestions on how I can help/ support her better? I don't think her cancer must become our main focus, she is so much more. But I don't want to sound dismissive about this huge diagnosis...

@proftom2 I’m so glad to hear how well you’re doing with your diagnosis and living your best life.

So awesome that you had to Google “scanxiety” to see what it is and then learn there’s an emotion out there you haven’texperienced. For me that’s like a very extroverted friend who says she doesn’t know what “shyness” feels like.

So sorry for your friend - that was pretty much my mom some years back. Less than 30 days. I think that also plays into my Scanxiety.

Praying for continuing good health, and thank you so much for sharing 🙏🌺

@aardvark2118 Oh no 😢 That must be so difficult and draining. I’m not sure know how or why I can relax until next scans. I think the practical thing is distraction. Living each day as fully as possible in the now. Worrying is so stressful, and you have an extra long period 🌺

I’ve thought hard about it over time and I’ll be SO cross with myself, IF I get bad results and need to go back into treatment, that I haven’t made the most of the “free” time of good results. I hope that may also help you focus more on now.

It is frustrating! I worry about the upcoming scan and once I get results (so far good news) I barely celebrate before I start the cycle of worrying for the next scan