Not existing QOL

[Tolife_18]

Dear sisters,

I try to read this forum as of often as I can, but rarely post.

I’m still receiving Ibrance+Letrozole, but my cancer markers are slowly climbing up and I have a feeling that the change is coming. Which is a shame because I’m tolerating this combination reasonably well.

But this is not what bothers me the most. I had a spinal surgery in October 21, but I never was able to walk after that. The reason given was that there was a major spinal injury and nothing could be done. Going back to my prior MRI, I’m convinced that the surgery was too late to avoid the injury.

Now I’m walker/wheelchair inside and wheelchair only outside.

I’m incontinent for the same reason.

I was extremely independent my entire life (according to my husband too much). Now, I can’t get dressed, shower, got in/out of bed, can’t get outside by myself. I can’t do anything for myself. Once active, my social life is non-existing.

My husband works and we hired a private house help/caregiver. I’m still working to pay for all extra expenses and get a good insurance.

I was diagnosed with MBC de novo in July 2020. I just can’t help thinking that I’m not living for the past 2.5 years since the surgery. I was always good enjoying little things in life and living in the moment, but I just don’t have an opportunity to do it any more. Live while you still alive. How?

I’m very sorry for the long venting post.

Wishing you all the best

[hopenowandtomorrow]

Dear Tolife_18: I am so sorry to hear that you’re now confined to a wheelchair 😢. That has to be a very difficult situation and it’s a daily process to adjust to . I was having difficulty walking after my pelvic & sacrum fractures caused by bone weakening from radiation. So I was in a walker/wheelchair for about 6 months. It was very difficult. This past February I had sacral lumbar fusion surgery & I am walking without pain for the first time in years. I’m in PT 3x a week & getting stronger every day.

In order to stabilize my fractures, the neurosurgeon at Moffitt put rods & screws from L4-S1 & more rods across to my iliac wings.

This surgeon is highly specialized & skilled with cancer patients.

Would you be open to a 2nd opinion? Just to be sure you have exhausted all your options.

I was turned down by 3 other surgeons before I had this surgery.

I pray that God helps you as you trust Him for wisdom, comfort & direction.

🙏❤️🙏

[Tolife_18 in reply to hopenowandtomorrow]

Thank you for your kind words. The surgery was performed by the renown neurosurgeon at MSK. The was no time to talk to others as it was rather urgent. Unfortunately, the monitoring was too conservative to perform the surgery earlier. That’s the problem.

Writhing you all the best.

[Bettybuckets in reply to hopenowandtomorrow]

That is so hopeful to hear your story!

[Lilywallytootsie in reply to hopenowandtomorrow]

Who is the neurosurgeon at Moffitt? My oncologist at Moffitt is Dr. Soyano. I did go to Dr. Kong, but he moved to Arizona due to his allergies. Glad your surgery went well. Blessings, Hannah

[worldtravel75 in reply to hopenowandtomorrow]

Who was the surgeon who operated on you and where is Moffitt?

[Tolife_18 in reply to worldtravel75]

I was operated at MSK in NY. The symptoms developed prior to the surgery, hence the urgency.

[jersey-jazz]

Dear Sister---I understand where you are now but did not understand what you mean by the surgery was too late. Your writing infers that you did not have surgery. Please explain more about what happened.

Be that as it may, the important thing is that your life has been so circumscribed to the point that you have little joy. If I am able to survive my present dangerous situation of acute liver failure, I will drive down to visit with you, only if you want me to. I think would/will have a lot to say to each other and that we would//willl enjoy ourselves. XXX OOO

[Tolife_18 in reply to jersey-jazz]

thank you for your kind words. I did had a surgery, but it looks that by that time the damage to the spinal cord below T6 was already done. I’d love to see you, but let’s take one day at the time.

All the best to you in your journey.

[jersey-jazz]

Gotcha! But, it is always nice to make plans.

[NPmary]

I just have to say your not venting, you are sharing - no apologies - no worries. Sorry only that cancer SUCKS and gave you a spinal cord injury. I used to care for people with spinal cord injuries (its been one of my greatest fears since the MBC diagnosis). I am so f****ing grieved this happened to you. 💔 Mary

[Tolife_18 in reply to NPmary]

Thank you for your understanding Mary. It really helps.

[Nocillo]

So sorry to hear about your current situation. If you are still working, that is huge. So, there is some quality of life in that. A great deal to someone who cannot work. Granted, sitting in a wheelchair isn’t something we would choose, but lots of people do so and have very full lives. I spend most of my days sitting and resting due to fatigue, but I read a lot, communicate with family and friends and keep myself busy with little projects. I rarely am bored. I know it’s tough, try to be kind to yourself and although life won’t be what it once was, it can still be wonderful! Keep up the fight! 🍀

[Tolife_18 in reply to Nocillo]

Thank you so much for sharing your experience. This is so encouraging!

Wishing you all the best!

[SKoter]

Hi Tolife_18. I had undergone multiple bone (spine, neck and hip) stabilization surgeries in 2022. I understand what you are going through completely. It’s been two years but I am too still dealing with mobility issues. It makes me sad to think that I have little time left but I can’t even tick off my bucket list. Don’t apologize. I understand you completely.

[Tolife_18 in reply to SKoter]

Thank you and I hope that your mobility issues will resolved and you’d be able to live your life to the fullest.

[mariootsi]

Prayers ane love to you 🙏 ❤️

[Lilywallytootsie]

Tolife,My heart breaks for you and I wish you more mobility, strength and peace. It's good that you are able to work. Focusing on work might be helpful . I sure hope so. Wishing you the best. Blessings, Hannah

[Tolife_18 in reply to Lilywallytootsie]

Dear Hannah,

Thank you so very much. Really appreciate your kindness.

All the best to you!

[BluHydrangea]

so very sorry your mobility has been compromised. I am amazed you continue to work and stay positive, which must be difficult. Please know we are with you and keep us informed on your progress.❤️

[Tolife_18 in reply to BluHydrangea]

Thank you so much for your kindness and encouragement.

[Tolife_18]

thank you so much ladies for your kind replies. I really appreciate it.

Just to clarify, it’s not just mobility, it’s a total loss of independence. Apologies for the details, but how do you deal with the life when you can’t get to the toilet by yourself, can’t wipe your own butt, can’t wear an underwear (urine incontinence).

Sorry, but it’s killing me mentally, just like cancer is killing physically.

[monkeygirl62 in reply to Tolife_18]

Tolife_18, my heart goes out to you. I can relate to being fiercely independent and the thought of having someone else do all of my self care would cause me to grieve. I sense you are grieving your loss of independence and also the embarrassment of having someone else take care of private needs like going to the bathroom. Do you also have a therapist to help you with this emotionally?

[Tolife_18 in reply to monkeygirl62]

Thank you so much! You put my feelings into words so perfectly. I couldn’t do it.

I recently got a therapist through the cancer group. Hope she can help me seeing things differently. Really like the one I have now.

Wishing you all the best!

[monkeygirl62 in reply to Tolife_18]

I hope she will be very helpful! And keep sharing here! We are here for you and to walk along side you in this journey. Hugs 🤗. Alicia

[Tolife_18 in reply to monkeygirl62]

Thank you so much dear Alicia!

[Artesa]

Thank you for sharing all of that. You're in my heart.

[Tolife_18 in reply to Artesa]

❤️❤️❤️