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Son with disability

Re: Son with disability-Update

Posted by VioletFlower on Mar 6, 2020 3:00 pm

Hello everyone, my son had his follow up meeting with the urologist. The team nurse and myself attended with him with his permission. Today we have goods news so will celebrate that! His testicular cancer was a seminoma versus non-seminoma which is good news! Margins are all clear! It did spread to the epididymis but this was also removed during the surgery. Tumour markers are clear! The exception is the LDH was up a little but he felt it may be a result of the cancerous testicle before surgery so with repeat blood work he hopes to see a drop in LDH.

Dr said this cancer can return so one option is to use radiation for prevention but he said the recommendation is to just do follow up screening at this point. So today we are happy and my son is celebrating with lobster, scallops and steak! He has a follow up CT scan and bone scan.

Re: Son with disability

Posted by MCoaster on Mar 7, 2020 12:46 am

VioletFlower‍   What very good news for you both and I certainly can feel the relief in your post.  It is good to know that he will be followed up on closely.   If I may say so you and he will have an even closer bond.  You  are an amazing and sensitive mom who also knows the best food to celebrate with!
Are you going to paint a celebratory picture?

Warm hugs.

Margaret

 

Re: Son with disability

Posted by VioletFlower on Mar 7, 2020 1:29 pm

MCoaster‍ , thank you for kind words and support. Also for the warm hugs, Margaret. We went to Costco afterwards and he chose those items as they are his favourite and he will get 4 meals from them. He also did the cooking.  I am so proud of him for going through this. He was very relieved as were all of the family! We still have to get the ok from the CT scan and bone scan but we are very hopeful at this point.

I want to thank all of you here at cancerconnection and the Canadian Cancer Society for the great information and support. You make our journey so much more tolerable! I wish my daughter, son and their half sister could have had this place for support when their dad had lung cancer then brain cancer. He was in hospice for over a year with the brain cancer and we were so grateful they allowed him to stay after the usual six months. It was a very difficult journey for them. The hospice made a video of him playing the piano while he was there.

I will continue to update on this thread as we get our scans and will continue to read and learn here and can hopefully give back in some way.

Warm regards & hugs
Judy

Re: Son with disability

Posted by jorola on Mar 8, 2020 8:23 pm

VioletFlower‍ I am so very happy for your son! And I must say he has an excellent choice in favourite meals! He has every reason to celebrate!
All the best to him and may you, as mom, go back to just worrying about usual mom stuff! 😉
Jodie
Live, Laugh, Love

Re: Son with disability

Posted by VioletFlower on Mar 9, 2020 11:19 am

jorola‍ , thank you for the support you provided. You have been like an angel to me, Jody. Your words helped keep my feet on the ground as my world spun around me. It is amazing how everything seems to shift back to how life was but even though I’m optimistic that he will be ok,  at the same time I am much better prepared if and when he is not. 

I saw my GP for the last time and increased my antidepressant as I was not on the optimal dose and feel it will help me to exercise and become more active with my life. Meditation is also important for me. Now I have to find a new GP where I live. She also suggested I look for a GP psychotherapist as they are covered by OHIP.

Yes, I am going back to just being his mom and will continue to look for ways that make his life easier without me as I come to the end of my own journey in this life.

Hugs to you, Jody and I hope you also continue to enjoy the things that make you happy.

Judy
 

Re: Son with disability

Posted by Lianne_adminCCS on Mar 9, 2020 1:00 pm

VioletFlower‍ 

I am so happy to read this update this morning. I know how much anxiety you had prior to the appointment so reading  the happiness in your post puts a smile on my face.

Keeping you both in my thoughts

Lianne

Re: Son with disability

Posted by VioletFlower on Mar 9, 2020 2:20 pm

Lianne_adminCCS‍   
Thank you so much for your thoughts , Lianne! Thank you also for all of your hard work on cancerconnection.

Judy

Re: Son with disability

Posted by jorola on Mar 9, 2020 6:31 pm

VioletFlower‍ / Judy
You are most welcome. That is what we all do here for each other - listen and support each other.
Sometimes we get tested in life when we least expected it. You came through it. Sure some bumps and bruises but eh those are wisdom marks right?
Continue to take care of you. All the best to you both.
Jodie
Live, Laugh, Love

Re: Son with disability

Posted by VioletFlower on Mar 24, 2020 11:32 pm

Hello everyone,

My son did his last CT scan today so the bone scan and blood test are also complete and we see the urologist on April 2 for results. Today I was not allowed into the hospital but he was fine on his own and I called yesterday to insure the appt still stood and what exactly happens with a CT scan for him. He had headphones and music to occupy him and I told he would be drinking lots of fluid and had to stay there for 3 hrs. Someone like my son does better with preparation than just going with the flow. He also had his phone with him and money for snack but he would not be able to think to bring these things on his own. He called me to say that he was settled inside and that he had to drink liquid every Hour for the 3 hrs then have the scan at the end of 3 hrs which only took 5 mts. I told him that I was just waiting in the parking lot outside when he was done. They had free parking today and the cafeteria was closed but he could access the vending machine in emerge but he chose not to.

Hope everyone is doing ok with all of this anxiety and real concern for your health around this Covid-19 virus. We have been doing our part with my son spending his days at my house and at home cleaning his apt. My son has problems with being able to organize his cleaning and by problem I mean he does not clean or would not allow anyone to help him much but the last two weeks he has been reading a book on Feng Shui and organized his entire apt on his own in the Fean shui way! It really is like a miracle! He was also cooperative with me doing all laundry, washing floors and vacuuming (it’s been years so imagine). Needless to say I’m happy but exhausted and my house is a mess. He also has not played video games in many years so I got an Xbox and he is teaching me to play video games. We have been having fun and he is way better than I am haha. Interesting to learn what the younger teens are into these days. Unless you have relatives you see regularly in the younger age groups you become so out of touch with younger generations especially being retired.

Despite all of the chaos with our current situations our family life is actually improving. The virus has taught my son the importance of being aware of germs/ bacteria and how we need to protect ourselves from them by washing hands, coughing into our elbows and limiting contact with people during this viral pandemic. He does not watch the news though which would probably overwhelm him so it’s a good thing.

Re: Son with disability

Posted by Lianne_adminCCS on Mar 25, 2020 2:07 pm

VioletFlower‍ 

Nice to read all the good things that have come out of this for you and your son. I always try to look for the wins and those are definitely wins.

Will be thinking of you both for APril 2nd. Let us know how it goes when you can.

Take care

Lianne
 

Re: Son with disability

Posted by MCoaster on Mar 25, 2020 4:39 pm

VioletFlower‍   Hi Judy.      I went back to your earlier posts and all I can say is “WOW, well done and your son”.   Sounds like he could be a Feng Shui consultant and you a video gamer.
Hope all goes on April 2.  Please let us know.
Stay safe.    I have cracked hands with hand washing and am steadily working my way through a large number of creams which my daughter has given me over the years.

Big hugs.

Margaret

Re: Son with disability

Posted by VioletFlower on Mar 26, 2020 8:11 pm

Hello Lianne_adminCCS‍.  Thanks for your reply. It is good to have some wins for sure. I’ll gladly take them.

Thank you, too, MCoaster‍ .  Not sure if I will be able to play video games very well, Margaret, but it’s fun trying. I will never be interested in the shooting people games with all the graphics but there are many kinds of games to play. 

Gehwol is a really good brand for cracked heals and general foot creams. It is sold at  Shoppers but not sure if it’s at other drug stores. I like Eucerin for hand cream. I tend to have dry skin in the winter.

We are both hoping to hear negative results on April 2. It will be a phone consult which is easier than driving to Peterborough. Will update here. So nice to have online support during this pandemic times and I have personally finding the free course, support group and one to one counselling from The Ontario Caregiver Organization very helpful. This is the SCALE program on their website and the webinars are live but posted after so anyone can view them!

Re: Son with disability

Posted by VioletFlower on Apr 2, 2020 1:04 pm

Hello, everyone.
My son with testicular cancer got his follow up call from the bone scan and CT scan with his urologist. The scans were negative with the Dr., stating that he is not concerned but wants to check further with something he saw on the bone scan by doing an MRI of his skull. This will be done when the covid-19 clears the medical system.

Sooo it’s all good news for us so far! Am I correct to assume he is cancer free? He will always have to do follow up tests of some kind to ensure it does not return, I’m assuming. It has been hard the couple days before with the waiting for results but I’m hoping that from here on in I can tell myself that it is all good until we have the facts to the contrary. I just feel like the worst is behind us now.

What other things should I be considering regarding prevention for him to get it again or is just going back to living our lives and enjoying everything we can, the approach to take? Do the inexpensive  bucket list kind of thing maybe?

May you all find peace within your struggles.

 

Re: Son with disability

Posted by Cynthia Mac on Apr 3, 2020 10:00 am

VioletFlower‍ , I’m happy to hear that the urgency of your son’s case has been downgraded to “until after this is over.”

As for your comment

from here on in I can tell myself that it is all good until we have the facts to the contrary.


That is an option that is open to all cancer patients.

Love and light,

 
“When the root is deep, there is no reason to fear the wind.” - Japanese saying

Re: Son with disability

Posted by Lianne_adminCCS on Apr 3, 2020 12:37 pm

VioletFlower‍ 

Great news! Thanks for circling back and sharing this update with you.

I agree with Cynthia Mac‍ - what struck me is when you said: I can tell myself that it is all good until we have the facts to the contrary.
This is something that is so helpful for all of us but easier said than done . Take this good news and run with it!. Even when you go for the MRI, assume all is well.  
As to how to move forward, I would think about all the good things that came out of this. You talked about some changes that your son made like feng-shui , and taking care of himself. I would nurture those kinds of things and the general suggestions for reducing cancer risk like healthy eating, exercise , sun safe and the like.

Time to exhale a little bit mom, you've done good

​​​​​​​Hugs

Lianne
 

Re: Son with disability

Posted by VioletFlower on Apr 3, 2020 2:46 pm

Cynthia Mac‍  Thanks for your reply! I am feeling like I’m at the bottom of the roller coaster but unsure if I should get off or prepare for the next ride. I guess I can just ride around in the cart until it starts to climb again and accept that I have no control over if and when that is going to happen. I actually really dislike roller coaster rides.

Lianne_adminCCS‍ , thank you for your thoughts and encouragement! I was so hoping someone would have a prevention for the return of testicular cancer...funny how that question is one of the first that just keeps circling in your mind. Yes, of course it is all about general health care and it’s not even my body with the cancer so I have to let even some of those general health care things go. You are so right that I just need to focus on the positive things that are happening. I can do that. Thanks for the permission to take a break for myself! I can do that!

I just have to tell you folks that I never would have had the wonderful support and information that I have found here on this sight and from the bottom of my heart I am so grateful for that. You have made this journey so much easier for my family. 

I wish I could wave a magic wand and make it all better for the many of you that are struggling with such huge tasks that you have to attend in this life. If only I had the experience or words to offer comfort but know that my thoughts and prayers are with everyone on this site.

I have found this mindfulness app most helpful for me to try and live in the moment. https://tryhealthyminds.org/

Virtual love and hugs
Judy

 

Re: Son with disability

Posted by MCoaster on Apr 4, 2020 1:13 am

VioletFlower‍   Hi Judy.  

I am so sorry that you are left with some uncertainty about what the doctor said but he does not seem to be too worried and is certainly very committed to looking after your son.

I cannot really add to what Cynthia Mac‍  and Lianne_adminCCS‍  have said but I am so glad that you find mindfulness useful.   It is the main tool in my bag of essential tools to survive what life has in store for us.
If you have trouble sleeping have you tried a podcast out of the UK called getsleepy.com?   It starts with some mindfulness and then you listen to someone with a soothing voice read a story which is very descriptive so that your mind visualizes that you are there.   I very rarely hear the end of the story.  My new favourite is about a Labrador dog’s day and I love it because Cora is just like my Toby!   There are lots of stories to choose from.

Look after yourself.   You and your son have weathered the ride well and his clean apartment and your new skill as a video game player are big plusses.

’ Hugs as always.

Margaret