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member check in

member check in

Posted by Brighty on Jun 8, 2020 6:15 pm

Just wanted to check in with some members who we haven't heard from in a bit.
LANDSCAPERNF‍ 
IamJay‍ 
Birdwoman‍ 
thecatsmeow‍ 
Drscrs‍ 
Debd‍ 

drop us a line when you get the chance!
Help is out there. All you have to do is reach out.

Re: member check in

Posted by Yuliya on Jun 8, 2020 6:19 pm

Brighty‍  how thoughtful ♥️

Re: member check in

Posted by Drscrs on Jun 8, 2020 8:28 pm

Hi Brighty
I am still here.  It has been a roller coaster ride for months, and that don't include covid-19. I find myself depressed, most of the time.  This goes back to my youth, a problem that has haunted me all my life. I find the older I get, the more the impact. The sexual abuse happened when I was about 4 and half years old and continued till just after my sixteenth birthday. I don't know how to cope with what I have lost.  I know, I should be concentrating on my current life.  I try, but don't always succeed.
I am in touch with a social worker.   We talk every week and hoping soon to be able to meet in person. 

Take care, and be safe
Wayne



 

Re: member check in

Posted by Brighty on Jun 8, 2020 8:41 pm

Thank you for your reply  Drscrs‍  Wayne.    Sorry to hear you are struggling .      I'm glad you are speaking with a social worker.   Are you able to get out  a bit for a walk or fresh air?    
Help is out there. All you have to do is reach out.

Re: member check in

Posted by Drscrs on Jun 8, 2020 9:11 pm

Hi Brighty
Yes, I can get out to get some fresh air.  I live on about 3/4 of an acre of land.  I try to get out fine days, there is always something that needs to be done.  Two hours is my limit.  I have problems with my heart.  I am waiting for a call to get an angiogram done, and the doctor has me on meds.  I do what I can, when I can.  It does upset me that I can't do as much as I would like to be able to do, but neither am I as young anymore.  Oh well!!

Wayne


 

Re: member check in

Posted by thecatsmeow on Jun 9, 2020 9:27 am

Hello All,
Yes, it has been a while. I wanted to check in and let you know that I just had my 6 month cancer follow up cancelled due to COVID. This was really hard for me and I did not anticipate how difficult it was to not have it.  Normally, every time when my follow up appointment comes up..I have a restless sleep and it comes with mixed emotions. I dread having getting my blood work done (I had Non Hodgins Lymphoma) I was scared of the what if's. Now, I have no idea when it will be rescheduled and ultimately realized that I do rely on the follow ups to know what is happening with my blood.  It is for catching cancer early now I have no idea what is happening to my body. 

 

Re: member check in

Posted by Birdwoman on Jun 9, 2020 9:36 am

Hi Brighty‍ thanks for asking. You are so good at welcoming and responding to members. It is so nice to see how strong you sound these days after all that you have gone through. I haven't been on this forum for a while  but read the digest every day and cry often.
How I learned I have cancer - was diagnosed with uterine cancer  in January of 2016 and informed by phone when I was visiting my Dad in his nursing home in Montreal. I live in Ontario. I was in a state of shock. I had a D&C a few weeks earlier and that is where the serous cells were found. When I met with the oncologist I learned that not only did I have cancer (I had been a health nut all my adult life) but an aggressive serous uterine carcinoma stage 3c requiring months of chemo and radiation. My life has never been the same.
It is 3.5 years since I finished treatment and thankfully the nausea is getting less. The fatigue is augmented by arthritis in my back and the neuropathy in my feet is getting worse.
But I walk every day with a cane and am so thankful I had my hip replacement last September or I would be in a wheelchair. Covid makes everything harder and the isolation is hard.
I will be 72 this summer and am very grateful to still be here. But it is like going downhill, you can see the bottom, not like before where I would soar on dreams and kayak for days on the bay, and walk for hours through the woods seeing foxes and bears and birds. I guess that is old age? I am still trying to figure things out! I make the best of things and try to smile, haha, one of my front teeth broke and I have a hole like a pirate. With my wig and my cane maybe I should audition for a role? Let's keep laughing, better than crying! Love and blessing to all the warriors here! We are stronger than we think!  

Re: member check in

Posted by Brighty on Jun 9, 2020 2:19 pm

Happy to hear back from you Birdwoman‍ !   Thank you for what you said.    Sorry to hear you feel sad.   Do you have any family ot friends  you are in touch with regularly?   I'm glad the nausea is less bur sorry about the arthritis and neuropathy.    Do you have something  to take for the pain?  Keep up with the walking!  It's good for you.   I do recall your birthday  being in summer! ! August something right?  9th?  Or am I way off? ??   I think  I remember that date  because  I was going downtown on the subway  that day and you had posted that it was your birthday  and you were so happy to still be here.    Let me know if I got the date right !!  Glad you still have your sense of humour.   Keep hanging in there , warrior!!!!!
Help is out there. All you have to do is reach out.

Re: member check in

Posted by Brighty on Jun 9, 2020 2:24 pm

thecatsmeow‍  glad to hear from you too!! Sorry your apt.  Was cancelled.   I hope it will get rescheduled soon as things start to open up agsin.      Keep calling and be persistent! !   Let us know when you get the appointment.  Looking forward to hearing good news from you.   
Help is out there. All you have to do is reach out.

Re: member check in

Posted by Kuching on Jun 10, 2020 7:44 am

Hello thecatsmeow‍ .  I don’t understand why your bloodwork is cancelled.  I have been getting bloodwork once a month at LifeLabs (I’m in Ontario) and that’s just to check on how the drug I’m on is affecting me, nothing especially urgent.  It seems to me you would be higher priority than me!  Even if you can’t have the rest of the checkup, they should at least be able to do your bloodwork, and give you some peace of mind.  

Re: member check in

Posted by Cynthia Mac on Jun 10, 2020 8:15 am

thecatsmeow‍ , Sorry to hear your tests were cancelled. The pandemic has put a lot of stress on people who are missing their routine checks. My Dad’s oncologist even cancelled outright one of his treatments, and I want to see if I can help you adjust to the idea.

Dad’s doctor cancelled his mid-May treatment because he expected that the pandemic would be peaking at that point, and he didn’t want to risk Dad having to go to the hospital twice around that time (once for his bloodwork, and then the next day for his chemo). Dad has been responding well to his chemo and immunotherapy and he decided that the risk of him missing one treatment outweighed the risk of exposing him to the virus.

Perhaps, if you are able to view the situation from a similar vantage point, it might help you get through to your next round of tests. Two other thoughts:

- would you consider calling the doctor to see if they can “fast track” your next 6 month check?
- have you tried doing some affirmations/ meditation/ mindfulness practices? I have an e-book by Jon Kabat-Zinn and Dr. Andrew Weil called “Meditation for Optimum Health” and there’s an accompanying 23 minute audio of just the actual meditation in the book that you can get from Audible. Louise Hay is my “go to” for matters concerning the power of positive thinking. Some night time meditations might also help you with your restless sleep. I’ve had a stressful couple weeks, and I’ve been playing a different audio book or app every night (except the two nights I fell asleep on the couch!)

I’ve also got a couple of questions you could ask your doctors in a phone call:
- what risk is there in me missing this round of tests?
- Can you schedule my test as soon as things “open up” enough for me to have them?

I can sure appreciate the nerves you feel around having bloodwork, and it must be awful for you to have “built up your nerve,” then have it get cancelled!
“When the root is deep, there is no reason to fear the wind.” - Japanese saying

Re: member check in

Posted by thecatsmeow on Jun 10, 2020 9:51 am

Hello Everyone, ( i hope my tags work)

Thank you for your support during this difficult time. Kuching ,  you have asked about going to Lifelabs. I think my blood testing/requirements can only be done at the Cancer centre. This is my thought process anyway. I don't know. My oncologist is on maternity leave and another dr was taken over in the meantime. I may pursue speaking with that dr. However, this situation has opened my eyes to deep fear I feel. I am taking this opportunity to uncover these intense emotions so that I can be a peace with anything that goes on in my life. As you know cancer dx has an impact that directly targets our thoughts of our mortality.

Cynthia Mac , thank you for sharing about your dad situation. It is hard for everyone and my heart goes out to him. You have mentioned on Kabat-Zinn, Dr. Andrew Weil and Louise Hay. I am familiar with them and I will check out what you have recommended. 

I appreciate the support and at this time, I am not crying as much but my body feels tense. Energy shifted...I think because I had to function (go back to work and get into life again) but the gravity of my emotions are deep and I hope that I will be able to heal and not suppress. Sometimes I wish that I can just throw up emotions physically and then I know it is out of me! LOL....lots of deep breathing and being in this moment is my focus now. 

Thank you for being a part of my healing journey.
 

Re: member check in

Posted by Cynthia Mac on Jun 11, 2020 10:45 am

thecatsmeow‍, WOW, can I relate to this:

I am not crying as much but my body feels tense


And this:

Sometimes I wish that I can just throw up emotions physically and then I know it is out of me!


I’ve never really thought about it quite that way, but YEAH!

Sometimes, when I’m here, I feel a bit like Red Green: “I’m pullin’ for ya, we’re all in this together,” and “Keep your stick on the ice!” Who knew how wise HE is?
“When the root is deep, there is no reason to fear the wind.” - Japanese saying

Re: member check in

Posted by IamJay on Jun 13, 2020 11:54 am

Thanks for checking in Brighty‍  I'm doing ok and enjoying the warmer weather now. I'm finished radiation and getting some energy back and able to work on a few projects with rests in between. I was even able to get out for a few days camping.
I'm trying to keep things simple for now. Once I'm back to work at the end of the month life will change so trying to enjoy my time atwat home I have it.
All the best to you all
Jay

Re: member check in

Posted by debd on Jul 7, 2020 1:13 pm

Sorry, life has gotten away on me and i have neglected posting for a while.  My husband just had his 4th Pembro treatment this past Friday and he is not doing well, he has been struggling with side effects.  Following the second treatment he developed IBS symptoms and with each subsequent treatment he has gotten worse.  To top it off due to him being on warfarin for a mechanical valve his INR has been high and he developed a blood clot in his lung.  I am now awaiting the oncologist to call and resolve some of these issues.  
I am frustrated with the whole COVID thing and having to speak with health professionals over the phone as it is difficult to complete a good assessment.  Right now i am waiting on the oncologist to call about his breathing and cough since his oxygen keeps plummeting below 85% even while resting.  My fear is his pneumonitis has returned and he will have to be  on prednisone again which means treatment will stop.  
Sometimes life just isn't fair sure hope he cuts a break soon as his quality of life is virtually non existent.  We were hoping for a good summer together as a family but he is unable to do even the simple things and enjoy them.
Debd

Re: member check in

Posted by MCoaster on Jul 7, 2020 1:35 pm

debd‍   I was very fortunate that my dcis was removed by a bilateral mastectomy and required no further treatment.  On reading your post I can only guess at the turmoil the lack of communication and eyes on time is generating.   This may sound simplistic but would your g.p. be able to approach all of the cancer professionals and perhaps clarify your husband’s situation and way forward?   As I say mine was a fairly uncomplicated situation and I also have a really good g.p. who willingly approached his colleagues about my situation.

 Please look after your self.  You are special.

Margaret
 

Re: member check in

Posted by Lacey_adminCCS on Jul 7, 2020 2:41 pm

debd‍ 

Your family certainly deserved to be cut a break. Thanks for stopping in and saying hi. Things must be very busy for you right now.

COVID definitely adds to the already stressful situation that a cancer diagnosis brings. MCoaster‍ makes a great suggestion about having your GP help advocate if you have one to work with?

Do you have help at home? When do you expect to hear from the Oncologist?


Lacey