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Alone

Alone

Posted by Peachs45 on Dec 7, 2020 12:20 pm

Hi my name is leah. I just had my radical hysterectomy and lymph nodes dissection on the 23. Feeling isolated and alone. How do you cope with all these emotions 

Re: Alone

Posted by Lacey_Moderator on Dec 7, 2020 12:45 pm

Hi Leah   (Peachs45‍ )

I'm glad you found our community. Reaching out for support and to feel less alone is a great way to help you cope. You have been through a lot both physically and emotionally. Our community gets it, you're not alone.

I'd like to introduce you to Elsie13‍, Oothoon13‍, Reg‍, Shell38‍, and a3a‍ who I think have experience with having a hysterectomy. Can you all comment on how you coped?

We also have a great booklet: Coping When You Have Cancer that I hope you find helpful. Go easy on yourself during this time of recovery. 

How is your recovery going?

Lacey
 



 

Re: Alone

Posted by Peachs45 on Dec 7, 2020 1:14 pm

Thanks for reaching out. Im so new to all this. My recovery is not going so well. I have to see my oncologist tomorrow as i haven't been eating. My stomach is swollen (not sure if this is a side effect)? Im still incredibly tired. Ive been on my own since surgery no support or anyone that truly understands. My family makes jokes about it sadly. 

Re: Alone

Posted by Reg on Dec 7, 2020 1:26 pm

Hi Leah, Peachs45‍ 
I’m so sorry you are going through this on your own. I had a radical hysterectomy followed by 2 months of radiation treatment. 
It’s understandable that your stomach is swollen and you feel tired. Your body has been through so much. 
It takes time for your body to heal after such major surgery. You need to try to eat even if it’s just soups or something light. It will help you build your strength up. 
We are here for you anytime you want to talk. 
Reg

Re: Alone

Posted by Peachs45 on Dec 7, 2020 2:20 pm

Reg‍ 
Thank you for your kind words. I had a radical hysterectomy and lymph nodes dissection on the 23 of November. I get my pathology on the 17. The recovery has been a difficult process especially since im alone with my kids. I never knew id be so swollen nauseous!! The pain has subsided a bot from the incision. Its been an incredibly lonely journey and dont know what next week holds.

Re: Alone

Posted by Elsie13 on Dec 7, 2020 3:30 pm

Hi  Leah, Peachs45‍ .  Sorry to hear that you are so alone in this. I had my hysterectomy at age 60, in 2016. I got my pathology results 4 weeks after surgery: stage 2 ovarian cancer.  My blood tests now show no evidence of disease. 

I live with my husband and our 2 adult sons.  So I had people to go grocery shopping and to cook for me. I remember spending most of my time on the sofa, for several weeks. Going from lying to sitting to standing was rather painful, but once I was "in position" I was mostly OK.  

May I ask, how old are your children, and who is picking up groceries for you?  
Sorry about your family's reaction.  What might be an explanation, or a partial explanation, is that they do not want to consider that you have cancer.  They want to think that you had minor surgery?  (Just guessing). 

There's something called Laparoscopic hysterectomy, I think, where they just make tiny incisions.  Your family wants to think you had that, but that's not the case when they suspect cancer, I'm thinking. 
In 2016: diagnosed with stage 2 ovarian cancer. Treatment: hysterectomy, chemo, radiation. Afterwards: No Evidence of Disease!

Re: Alone

Posted by Boby1511 on Dec 7, 2020 5:18 pm

Peachs45‍ 
Hi there, welcome.
I can't remember the full name of my operation, but they removed everything (uterus, ovaries, tubes, cervix) and parts of other things including my pooper.
I spent 3 weeks in recovery but in hospital (4 weeks total, was tough).
I too had belly swelling, I had fluid build up in the stomach, but has since resolved.
Keep your doc aware, they may order a CT as they did with me. Aside from the fluid they also found a clot.
My clot was not due to cancer but trauma from surgery (bit more serious when it's cancer related).
My clot has also resolved, however I am on blood thinners for life (cancer related).
My doc told me that fluid build up is not that uncommon after surgery, but requires monitoring. (this was after they removed stomach drain)
They put me on a pill to coat my stomach for all the surgery harm and meds I'm on. Helps nausea too.
I can't remember what they called it but I had something like a blood buildup where they tied off my incision.
This was quite painful, but has resolved (mostly). My surgery thou cut from the pelvic straight to boobs.
So was a large invasive surgery.
Even after the 3 weeks in hospital, I was barely walking a couple weeks following discharge.

Takes time to heal, no shame in reaching out for help.
I had to have aid showering for a couple weeks.

Today my energy is improving and I'm feeling more like the old me. Some things of course have changed forever, but you adjust.

Wishing you well on your recovery.
 

Re: Alone

Posted by Peachs45 on Dec 7, 2020 5:45 pm

Its good to know i have others that understand what i am going through. Im relying on my husband (separated) to come by a few times a week to do house hold and groceries. I have 2 kids both special needs (autistic) that i care for full time. My stomach is really swelled something i wasnt told would happen. The nausea is still there and im lucky if i get a small container of apple sauce in me once a day. Even that makes me sick!! I honestly feel like im 9 months pregnant and feel so incredibly bloted!! And how i gained 5 pounds from apple sauce is beyond  me?! I had full hysterectomy lymph nodes dissection they took everything (female part) it was abdominal pelvic bone to belly button which no longer exists. I see my oncologist tomorrow as shes quite concerened about my lack of eating. This has been an enormous journey and i dont know until next week if its over. I feel drained and cant wait to be cancer free...

Re: Alone

Posted by Boby1511 on Dec 7, 2020 6:25 pm

Peachs45‍ 
I'm glad to read you have doc apt tomorrow. Your stomach distension does not sound good.
Are there organizations that you could contact re: special needs children, that could provide some daily assistance?
You have a lot on your plate and not eating is going leave you no energy.
I know after my surgery I didn't eat for a couple weeks but I was in hospital and got lots of help.
And I didn't gain weight, my total loss was over 50lbs in hospital. (I've since put this back on)
I know with my distension even drinking was a challenge, I needed the IV.
There is something called respite care, at least in Ontario, they can come help with daily chores a couple days of the week.
homecareontaio.ca
Perhaps reach out to them?

Re: Alone

Posted by Brighty on Dec 7, 2020 6:34 pm

Peachs45‍  hi there. .. I'm not sure if you have had the chance to connect  with Whitelilies‍  yet.   She has 2 special  needs kids and went through cancer treatment.   She might be able to advise you how she managed      
Help is out there. All you have to do is reach out.

Re: Alone

Posted by Boby1511 on Dec 7, 2020 6:44 pm

Peachs45‍ 
Oh and my doc said ginerale was actually doing me some good since I wasn't eating. Helps with electrolytes or something.
I had low potassium so every little thing helped. Potassium by IV is not something you want to do for days. It burns!
My stomach liner pill helped with digestion. When food makes you nauseous it gets harder to eat.

Re: Alone

Posted by Reg on Dec 7, 2020 7:32 pm

You should ask your doctor about Zofran for the nausea. It helped me a ton during treatment. I’m not sure where you are but it may also be helpful to look at Wellspring. They have some great supports. I know they have locations in Brampton and Oakville. Check out their website. It’s worth a shot!
Keep reaching out here for support as well!

Re: Alone

Posted by Whitelilies on Dec 7, 2020 10:22 pm

Peachs45‍ Hello and welcome to our caring site...we are here to support you and your kids....we listen and share and more.
I have so many ideas to share.....to support you.....but do not wish to overwhelm.
I also have 2 boys with ASD !!!  I Get It !!  24 7......oh yes.
I am also an Autism Advocate for almost 20 years....for children....in the school system, to receive the supports they are entitled to.
Do your kids have an IEP? IPRC? EA? SNA?  I can help with all of these, from my heart.  
Your kids NEED routine, especially now.....online learning is not always successful for our special needs kids.
This transition is huge......
Do you use PECS? (PIcture exchange communication system?) Are your kids verbal?  I can help with ideas for that too...Communication Board is easy to make.

I  learned, that my boys thrived on "knowing" what is next?? So...after we get up....we get dressed....eat.....wash up....go to school.....with "pictures" they can "see" what is next, etc.
I can help with this too.....easy to set up.

I wish to support you.  You have had major surgery and need to heal.  Allow yourself time.....the pain will soon end....the nausea will too.....the bloating as well....in time.
If dad can take kids for even 2 hrs a week, that will be your time! to rest...to heal.....
I hope next week will bring you wonderful news.

Please know that we are here for you.......please share-ask questions...we will respond.  I have more ideas, feel free to PM me.....
Do kids get SSAH Funding?
Do kids get ACSD Funding?
Did you apply for Ontario Learners Support? ($200 or $250 one time payment, depends on age of child)
Are you on wait list for OAP? (Ontario Autism Program)
I can help with all these.....

sorry so long......
I am on the colon cancer journey myself.....I KNOW how HARD it is to heal....and be mom of 2 special needs kids........
I am here for you.

Sending healing thoughts,
Whitelilies

Lillian

Re: Alone

Posted by Peachs45 on Dec 8, 2020 12:32 pm

Good morning thank you for reaching out! My son (5) is verbal he has more of the anxiety being on the spectrum. My daughter (8) not completely verbal little understanding.  I know its heen really difficult on them being out of school no normal routine, but im doing my heat! I have funding for them both thanks for mentioning. Doing this alone trying to heal still not knowing if further treatment will be required two kids and a family that is not supportive some laugh sadly (ha ha now you wont get your period) i didn't ask for this it was taken it wasn't my choice!! 😭😭 feeling isolated and alone just everything is starting to surface and its scary...how are you doing today 

Re: Alone

Posted by a3a on Dec 18, 2020 11:06 pm

hi Peaches, I'm so sorry to hear things have been so difficult for you.  I had a radical hysterectomy last January followed by vaginal vault radiation.  I had some swelling in the belly area after surgery, and like you, eating was not appealing.  I hope things start to get better for you each day. I think everyone's given great advice--please see if there is some support available for your kids as well as yourself, through respite care via the autism network or whatever other sources may be available.  Your family doctor may know of some support systems too, or can refer you to a social worker/team manager who will be knowledgeable.

Like you, some of my family  members were a disappointment and some people who I thought were dear friends were unable to reach out. Initially I was a bit sad, but one never knows what's going on in other people's lives--they  may be having struggles of their own. Some people don't know what to say or do, so they withdraw from you. Knowing that this is not uncommon may be helpful--I've heard it from other friends who've had cancer as well.

It's almost a year since my surgery.  I feel well and although my cancer was considered to be an aggressive form, I'm optimistic that there will lots of good days ahead.  I hope there are for YOU too!  Take care of yourself, Ginny