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New members November 9-13

Re: New members November 9-13

Posted by Lianne_Moderato on Nov 20, 2020 3:28 pm


Hello and welcome. You have had some excellent replies from Dinooo‍ and MCoaster‍ .

I too am in BC and found some great resources through BC Cancer, including their patient and family counseling.. Another resource you may want to check out is Inspire Health . THey have locations in Vancouver and Victoria and many of their programs have gone online. It is free of charge. https://www.inspirehealth.ca/

Keep us posted on how you are doing


Re: New members November 9-13

Posted by Cynthia Mac on Nov 21, 2020 7:51 am

Hi, Fiver2020‍ , I was caregiver for my Dad who had metastatic lung cancer.  MCoaster‍ Gave you a lot of good advice: self care is important, so whether you do needlework or can “zone out” with an audio book, I, too, encourage you to find something that will help you get away and allow you to recharge your batteries. You are wise to reach out for help if you feel you need it. 

The PET scan will give your husband’s doctors some additional information. Dad had one when he was first diagnosed - at the time, he only had cancer in his lung, and it was the PET scan that told us that. 

Welcome to the Cancer Connection. It’s something like a “club you never want to join”, but once you have, a lot of people are glad they did.
“When the root is deep, there is no reason to fear the wind.” - Japanese saying

Re: New members November 9-13

Posted by Dinooo on Nov 21, 2020 9:27 pm

MCoaster‍ , Dinooo‍ , thank you both for your replies. I really appreciate it.

The oncologist has requested a PET scan, now scheduled in December, and it looks like he will have to do a course of LYCHOP (6 rounds). Unless the PET scan shows that there has been mutation. 
I guess we are in that horrible stage of waiting for a test. The doctor did say he thought mutation was unlikely, but I kind of wish he hadn't even mentioned it as its now looming as a spectre in my mind. I guess he had to though.
We are in BC so have access to the BC Cancer Agency resources. I did not do any counselling the first time around, I felt like we were coping OK. I am thinking I will contact them to find out about talking to someone. I just feel a lot of dread that seems to creep in even when I'm doing things to relax/distract myself. and COVID is probably just exacerbating all those feelings, I can't go visit my sister and my nephews etc etc. You're all in the same boat with that!

I will explore the forums - again, really appreciate you took the time to reply.

Yes, the waiting and not knowing sucks.
I got diagnosed back in late April/ early May. I was in Las Vegas mid-March for a conference and had had some testing done before I left.... when my doctor called and said I had a severely anemic red blood cell count, and needed to come home and do follow up testing. He said that cancer was a possibility but they'd be checking out other possibilities too.  This was right around the time the pandemic was just starting in North America (funny that Vegas didn't have anything about the pandemic, although BC was shutting down).  We left early, and got back the day after the 14 day quarantine rules started so we were in full self isolation for two weeks.... not even allowed to go to the hospital for followup testing.  That was hard.  Sitting around for 14 days without being able to take any action or even testing to move forward with a diagnosis or to rule out any other diagnoses.
Then I was able to get a scope as my GP thought it was maybe a bleeding ulcer. Nothing came out of that, and they did a CT scan the following week and they discovered tumors behind my stomach. So we knew I had cancer, just not sure what form. Everything in the medical system was working at bare minimum, surgeries were once a week with the COVID slow-downs.  I got a bone biopsy on my hip but there literally was no marrow there (because of NHL) so that didn't help with a diagnosis. Two weeks later I was able to get one of my groin lymph node tumors removed for a biopsy. However with everything shut down it took two more weeks before it was analyzed and I was diagnosed as NHL.  All this took almost two months... dribs and drabs at a time, but mostly waiting.  And talking and worrying and exploring worst possible outcomes with my wife, and discussing my end of life wishes and so on.  I felt pretty sick and slept a lot.
Those were probably the worse times, worse than any of the treatment. My GP was great while I was waiting, he called me lots to give me guidance and check in with me. Once I was feeling really down and he told me it was OK to be scared - I immediately broke down crying and admitted I was terrified. It was nice to let my emotions out to someone other than my wife. Sometimes I felt very raw with my emotions.
 I would like to thank you for letting me tell my story, it has been great and helpful for me to write about it.
OK, enough of the negative I will try to tell you a funny story to cheer people up.
 On my 50th birthday (May 2020) I was scheduled for some bloodwork at the cancer centre. When getting screened for COVID at the front door I answered yes to some of the symptoms, it seems my cancer mimicked some of the same symptoms.
Sooo they decided to give me the old Q-tip up those nose!
Now earlier in the week I had been talking with a elderly lady that had the COVID testing done, she said it was a tiny bit uncomfortable. So I thought this would be nothing.
The nurse was this tiny young lady who proudly told me she had just done lots of testing, it just had been on all the inmates at the local penitentiary! I pictured all these hardened men lining up laughing while they got tested.
The nurse was covered head to toe in hospital protective gear, glasses, full clear face visor and a mask under all that.
She had the Q-tip ready and said this may hurt a bit, to which I bravely said "no problem". She shoved it a long way up my nose and I swear it went up to my brain and then she started twisting it. I started crying and laughing and muttered "happy f%$^%cking 50th birthday to myself". She said "oh my god!! It's your 50th birthday, I am so sorry."
My wife came over and gave me a hug where I muttered "best birthday ever!!"  We both had a good laugh and cry at the same time.
You and your husband will get through this.  Some agonizing weeks of unknowns, then a path forward will come together.


Re: New members November 9-13

Posted by Fiver2020 on Nov 22, 2020 1:46 am

Oh Dinooo‍ , happy birthday indeed! thanks for that laugh. 
Thanks for sharing your story, the waiting really is awful. With my husband's first diagnosis (in 2018) he found out it was cancer, but wasn't going to get in to see the oncologist for almost 6 weeks. it felt like eons, and so crazy that he had to wait at all to start treatment. But once he was in the system with an oncologist, everything went fairly quickly after that.

Re: New members November 9-13

Posted by Cynthia Mac on Nov 22, 2020 8:03 am

Fiver2020‍ And Dinooo‍ — the waiting is one of the very hardest parts of the process.

Even though they caught Dad’s cancer early, I tried to steel myself during the waiting period by imagining (probably correctly) that his tumour took longer to appear and get to size (his was about 2.5cm) than the 6-8 weeks between its discovery and his surgery date, so, if it took 2 weeks to get the PET scan, it likely wouldn’t make a huge difference.

Now, different cancers grow at different rates, even different lung cancers, but allowing myself to think this for a few weeks helped me stay just a little bit more calm. When a loved one or ourselves are diagnosed, our minds make up many kinds of scary stories, so I figured that if this ONE, not-so-scary story could help me make it through this harrowing period of the process, it couldn’t hurt!
“When the root is deep, there is no reason to fear the wind.” - Japanese saying

Re: New members November 9-13

Posted by alexisrj on Nov 23, 2020 2:49 pm

I know I’ve “won” the cancer lottery with this one because you can lead a fairly normal life afterwards, but that door is not locked and anything can come in even if it’s not welcome. 

EVH‍ I see you posted this a week or so ago but I can definitely relate to your post and hope my experience might be helpful to share. I was diagnosed with colon cancer at the age of 35 (when my youngest daughter was 9 months old) and, unlike many younger people diagnosed with colon cancer, my cancer was found to be "only" Stage 1 (most often cured by surgery alone and a very low recurrence rate). Most young people diagnosed with colon cancer are in the advanced stages of the disease so I guess kind of "won" the early onset colon cancer lottery when my surgeon got my pathology report back after my surgery and told me "you're done!". Everyone was immediately thrilled except for me - it has taken me a long time to get to point of accepting that this situation is most likely ok now and I most likely won't be dealing with it again. I am very grateful for my circumstances but I still don't trust it - why was my cancer caught so early when most others aren't? how could it be this easy? (don't get me wrong, it wasn't easy but I know that it could have been much worse).

I still have days where it hits me and not a day goes by where I don't think about it at some point. But now, 6 months after surgery, I find I sometimes go hours or almost the whole day without thinking about it - I can wake up and think about getting the kids ready, what I need to do, and - still hesitantly - plan ahead for the future. It does get better over time - take it day by day, hour by hour, or minute by minute. Distract yourself as much as possible - hobbies or (like I did) binge watch some shows on Netflix!

How are you feeling after having some time to explore the site and any other forums for prostate cancer? Do you have a plan in place now for your treatment? I see others have connected you with some resources and others on the site who have experience with prostate cancer - hopefully those have been helpful!

I always found it was so helpful to talk to others who have experience with cancer, even if it was different types of cancer. This website is so helpful and there are many here ready to provide support!


Re: New members November 9-13

Posted by EVH on Nov 28, 2020 11:39 pm

Hey Alexis, Scott here, this is day three after my first procedure with brachytherapy, now next is the simulated ct scan and tattoos. I numb on the top of my “part” can’t feel nothing on the top, it’s scaring me to hell if I don’t get that feeling back soon. I’m so afraid if I don’t it will start to deform from the nerves not being used. I go in on Monday so I will talk to them. I’m not in any pain, that part was and still is awesome. Been taking my meds and trying to eat right. Thank you for your story, this is a very screw with your mind disease, that’s for sure. I hope we and everyone here beats this disease to s***. Right now I’m grateful for the science and research behind this. But I’m the lab rat now and it’s changed me so much in such little time to show me how precious life really is. Will defiantly get back to ya. Now it’s time to lay down cause apparently you get tired with this s***. You stay safe and I’ll answer more of your questions very shortly. 

Re: New members November 9-13

Posted by law on Nov 29, 2020 3:09 pm

Welcome Dinooo‍ , EVH‍ , Fiver2020‍, alexisrj‍   and all New Members,
Thank you for sharing your personal stories, humour, anxieties, comforts -----as all sharing is a sanity saver, a light at the end of a challenging tunnel, a welcome haven for those experienced with a diagnosis, less-than-or-wonderfully positive news and caregiving.

The paragraphs I copied below are a succinct collection of valuable contacts within the Canadian Cancer Society.... of which this CancerConnection.ca is included
It could be I am repeating information you already have, but it can help anyone in your 'bubble' searching for clarity in the "cancer world."
I have already learned so much from reading your candid contributions. Thank you!
Keep checking in...
(BTW---I tried to reduce the screaming size of the fonts....but I did not succeed) 😱😖

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Re: New members November 9-13

Posted by alexisrj on Nov 29, 2020 7:42 pm

EVH‍ Glad your feeling well so far! Many on here have suggested to bring up any concerns/questions to your doctors as someone there are things they do out at least can let you know what to expect and how long side effects can last, etc. Some find using a note book to keep track of treatments, side effects and questions/answers can be helpful as well!

if you want to tag someone (do their name turns blue and they get a notification to check your message) type the “@“ then start typing the first few letters of their user name and it will pop up and just click on the username of the person you want to tag.


Re: New members November 9-13

Posted by alexisrj on Nov 29, 2020 7:46 pm

Thanks for the welcome law‍ but I’m definitely not new! 🙃 Not sure if you meant to tag a different user...?


Re: New members November 9-13

Posted by law on Nov 29, 2020 7:57 pm

hi alexisrj‍ ,
Yes--- I tagged you by mistake as I know you are not a new member
Oops (sorry for that)