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Don't know where to start....

Don't know where to start....

Posted by Vandra on Nov 26, 2020 9:31 am

Hello
My name is Vandra and I am a cancer fighter.  Last year at this time, I would have written that I was a cancer survivor but how things can change.
17 years ago I was diagnosed with a rare form of cancer called Hairy Cell Leukemia.  It had a very good success rate with treatment.  I had a 7 year old at home and I was ready for the fight.  I had treatment and was told by my doctor that I was very likely cured.  So I lived my life.  I watched family members struggle with their own battles and I thought that my purpose for going through my own battle was to encourage them.  I knew what they were going through.
Last year, just before Christmas, I found out that my counts were dropping and that I would need a bone marrow biopsy to determine if the cancer was back.  Shocked!!  Two days later my office building burned to the ground.  I went for my biopsy in shock in more ways than one.  The cancer was back but before I could start the next treatment, I had to rebuild our office.  I had a month and half to get our house in order.
This course of treatment was different than my first go-around.  17 years before I had cladribine (spelling???) for 7 days, 24 hours a day.  I was hospitalized for 3.5 weeks.  This time around it was still cladribine but it was in a chemo chair for a few hours a day for 5 days instead of being hospitalized for almost a month.  But 17 years have brought advancements that I was unaware of were even available.  This time rituximub (spelling again??) was introduced.  I was given it initially once a week for 4 weeks and now I am on the 2 year maintenance dosage.  
Chemo is never easy but I was excited for the advances and that I could go home every night :-)  Challenges were still put up, hospitalizations and infections but you deal with it.  
I had my first two maintenance treatments in June and August and I developed infections.  My maintenance treatment this week was changed.  While I was sitting in the chemo chair, the hospital chaplin came in and we talked.  I realized that I weary and felt like I needed to talk to someone.  In her wisdom, she told me about the Canadian Cancer online forums and that maybe reaching out to others who knew how I felt might be helpful.  
The first time around I was younger and then when my doctor said the "cured" word, I felt that my battle was just a blip in my life.  This time I don't feel that.  I know that cancer creeps up on you and it has for me...both times.  But now if feels like a permanent weight around my neck.  Maybe it is also Covid fatigue but I can't shake this weight.  I want to be a fighter again and be positive but I can't.
I hope that all this negativity doesn't harm.  I want to be positive to my family and not burden them with my "downness".  They have enough to worry about.  Is this feeling normal for those who are in their second or third go around???
Thanks for letting me release these emotions and again I apologize if I have brought negativity to the table.

Re: Don't know where to start....

Posted by Runner Girl on Nov 26, 2020 9:59 am

Welcome Vandra‍ ,

You have not brought negativity to the table so please let that go.  You've simply shared with us your story and we are grateful for your trust.

I am sorry you are having to go thru treatment again, but the advancements since your last time must be quite encouraging.

I am a breast cancer survivor.  I joined this site the day after I received my diagnosis in 2018.  The wonderful people in this community were instrumental in helping me understand what was going on, what to expect and were here to celebrate the wins with me.  

We will be here to support you on this journey.  Please, allow your family to support you as well, taking it all on yourself will be too stressful and will wear you out.

Runner Girl
Never stop believing in HOPE because MIRACLES happen every day!

Re: Don't know where to start....

Posted by Kims1961 on Nov 26, 2020 10:43 am

Vandra‍ 

I second what Runner Girl‍  said as well.  I am so glad you have posted!  Funny, I just saw this poster:

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These forums allow for us to talk about our worries, our joy, our hope but also about dying, what about our family, etc etc. 

When i first joined, it actually helped that “weight around my neck” when someone else posted about not doing well, or struggling.  The mental health journey of cancer is real .  

Sometimes it is just the reality and the need to connect with others that can help us with this weight.  If the weight is interfering with your daily activities , speaking to a social worker at your cancer centre or through your family doctor can be helpful. I found this weight turned into anxiety for me, so discussed with my doctor some strategies that could help but also if there were medications that could be helpful.  This community was so very helpful.

I don’t know much about your type of cancer, so am going to look that up. 

How are you children - now young adults - managing the news?  My own were far more resilient than i gave them credit for.  

Do you have hobbies or things you enjoy to help with stress?  I found getting outdoors was so good for my soul - even just a walk around the block ( as long as its COVID friendly now!)

There is a publication that I found helpful:https://www.cancer.ca/~/media/cancer.ca/CW/publications/Coping%20when%20you%20have%20cancer/32127-1-NO.pdf



We are here and am so glad you posted!!  Please let us know how you are doing.

Kim



 
Her2+, ER+ Bilateral mastectomy in 2017, followed by chemo and radiation. Mack and Hannah's mom

Re: Don't know where to start....

Posted by Vandra on Nov 26, 2020 11:12 am

Thanks for these posts.
I have one son who is newly married and they are moving into their first house in one week.  I have a wonderful son and daughter-in-love :-)  My husband is a social worker and is so supportive.  I feel like I burden him often but he never complains.
I exercise every day, usually a walk to get fresh air.  All my hobbies are on hold due to Covid.  I think Covid has added an extra layer of stuff - emotions, fear, isolation.
I appreciate your encouragement and help in changing my focus.  
 

Re: Don't know where to start....

Posted by Brighty on Nov 26, 2020 12:21 pm

‍ 
Vandra‍  glad that you have such a supportive  son and daughter  in law and that you exercise  daily.  Never feel like a burden.     Let people  help you and there for you.  Those who care will want that..   There are many hobbies  and things you can find to do on line these days.  Art classes to book clubs...to card games...just about everything to distract yourself .     Keep us updated on how you are doing. 
Help is out there. All you have to do is reach out.

Re: Don't know where to start....

Posted by Lacey_Moderator on Nov 26, 2020 2:05 pm

Vandra‍ - I agree it has added a second layer. 

Please add us to your support system. 

Take Care,
Lacey

Re: Don't know where to start....

Posted by Kims1961 on Nov 26, 2020 4:00 pm

Vandra‍ 

My husband is also a social worker and was wonderfully supportive, but there were times i just wanted him to be my husband and not my cancer supporter. The wonderful and difficult thing about family is that we can read their feelings through the non verbal expression , than the verbal sometimes.

Congrats to your son and daughter in law in moving to their first home! A nice distraction for sure.

Sometimes i could change  or shift my mindset and other days, i just said %$#! I”m angry ( sad, mad....)

We are here.  Kim
Her2+, ER+ Bilateral mastectomy in 2017, followed by chemo and radiation. Mack and Hannah's mom

Re: Don't know where to start....

Posted by Nix on Nov 27, 2020 7:22 am

Vandra‍  I feel you on the extra layer and weight of cancer during covid! Having journied beside my mom during her metastatic breast cancer journey for over 3 years now I have seen how a chemo suite can look during non-cancer times, I have helped find and register her for support groups/events, I have heard her stories about how getting together for those groups and events were such positive experiences for her. I myself was diagnosed with breast cancer in August 2020 and am currently receiving chemo. I regularly mourn the fact that covid has taken away an avenue of support that I would have had otherwise. There are online groups and events and I do participate in some but it’s not the same.

Also, please do not worry about bringing negative energy. As others have said, we’re all about being real here. No artificial smiles or fake happiness needed.

I also echo others suggestions to find/speak to a social worker or councillour who isn’t your husband. This journey can be heavy, and we all need various types of support working together to get through it. Let your husband be your husband and someone else be your therapist.

Re: Don't know where to start....

Posted by law on Nov 27, 2020 2:17 pm

Thank you Vandra‍ for your candid explanations of the past 17 -20 years of your life. We  welcome you to this site and sharing your story. This site is about supporting you through your fight...and, beyond!  Your strengths are amazing; cancer diagnosis AND the fire within your office --- holey moley, what a tough week to live through emotionally and later, the surgical decisions you made with your oncologist. You hang on as you seem to be willing to accept and carry on......please, please keep us posted. This site is full of empathetic and kind people. No matter how small or large the size of the steps you take, are all are moving you forward.
law

Re: Don't know where to start....

Posted by Mammabear on Nov 28, 2020 12:20 pm

This is exactly what is so great about this site. No wallowing to family members and bring them down but allow you to get it off your chest. I cry while writing many posts but try to stay strong outwardly to my family so that they don't go down the rabbit hole with me. When I was diagnosed with cancer 1.0 my husband said his cave wasn't deep enough for this. He is super supportive but it is easy to bring him down and I don't want that either. we are your extended family. we get it. and we can take it. lay it on... we will be here for you

Re: Don't know where to start....

Posted by law on Nov 29, 2020 2:28 pm

Hi Mammabear‍ ,
We are glad you are keeping us posted as to your emotions and those of your husband, your child/ren and child-in-love. What a great expression!
It's nice to share your family stories as well. This group of supportive people is such a relief for all who avail it. Loving friends and family definitely fasten a life preserver on us to tread the waters, but those who have firsthand experience and knowledge with cancer and caregiving are intimately supportive....and, if they are not, then I've learned how to weed them out.
Keep up the journey, Mamabear
law

Re: Don't know where to start....

Posted by Boby1511 on Nov 29, 2020 11:04 pm

Vandra‍ 
When I first joined the site I put a disclaimer on my page "not the most positive person" (meaning me). Felt I had to warn people before they read any my crazy rants. I took the cancer news pretty hard in the beginning, lost my mind a little (probably should have signed up for a little mood meds). But the people here have been great and I cried many a times posting here, but I have felt less alone having joined and by all the support received here. I am grateful. I hope you find some comfort here. I would think facing it a second time would be especially hard. To have put it all behind you just to come back. Myself I don't know that I could do surgery again given what I know now. I am not that brave.
Sending you best wishes.

Re: Don't know where to start....

Posted by Cynthia Mac on Dec 1, 2020 8:13 am

Vandra‍ , When reading your post, one of my biggest take-aways was the message that on your second go-round, you were able to go home at the end of the day. 

When my Dad started chemo, I was terrified. For him and for me. The “for me” part is that I’m not good with needles, and I did end up leaving the room for the few minutes when the nurses set his treatments up, but I was able to be with him after that was over. The “for him” part was all of those awful things I’d heard about the “chemo treatments of old.” When his treatments started that’s all I knew, and I didn’t know about Cancer Connection, so I didn’t have anyone like you to give me that reassurance.

Since then, I’ve often said that chemo treatments are different than they were 20 years ago. Thank you for sharing your story and backing that up!
“When the root is deep, there is no reason to fear the wind.” - Japanese saying

Re: Don't know where to start....

Posted by Lacey_Moderator on Dec 1, 2020 9:19 am

Boby1511‍ 

So glad you have found comfort here. I am so grateful for the comfort and support you offer others also. You have an important voice in our community.

Re: Don't know where to start....

Posted by Lacey_Moderator on Dec 1, 2020 9:20 am

Vandra‍ 

We are here for you on the good and bad days. I'm so glad you reached out. 

Hugs,
Lacey