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New members November 9-13

New members November 9-13

Posted by Lacey_Moderator on Nov 13, 2020 1:38 pm

Take a moment to introduce yourself below 👇😊

Re: New members November 9-13

Posted by CatherineS on Nov 13, 2020 10:09 pm

Hi, my name is Catherine. I'm 56 and was diagnosed with stage 1 breast cancer in July 2019. I had a lumpectomy in September and did chemo from October to April at RCH. Then another 16 radiation treatments in Abbotsford until the beginning of June. And then it's just over. No support, no information, nothing. My GP stated early on that cancer was not her specialty and that it would be best for me to work with my oncologist... My oncologist says I should get my exams from my GP... I am SO confused.

Re: New members November 9-13

Posted by elle29 on Nov 13, 2020 11:47 pm

Hi Catherine , How r u feeling ? I am stage pT2  pN1a , graded 111 ,. N for node 1 a I believe the stage . What point are you at along this path with cancerr?
Now 2 weeks post surgery,  a partial mastectomy ( not lumpectomy ) for 4 weeks cannot lift anything over 5 pounds .Grateful being diabetic , all went very well my 2nd week recovering .Healing incision closing up. .
Asking for copies of Pathology Reports .It gives the actual book reference they go by in measures , standards  , common characteristics . In AJCC / UICC  and Canadian AP 8 th edition Feb 2019 . We need some newer measures added and adjusted UK study is doing for 5-10 days radiation only .Lookng at the Path Report , some words I am unclear of their meaning like Ie comedo necrosis relates to death process at cell level  ( need to look in a medical dictionary ) ,
Always lots to do appreciate the time , to research links here and ask some intelligent questions later and especially R&R . Being high grading this is urgent can't do anything until doctors , oncologists meet over my case , being a weekend too .But glad for the break .
How about you ?
 

Re: New members November 9-13

Posted by Essjay on Nov 14, 2020 9:25 am

Hi CatherineS‍ I’m in the same situation as you. Stage 1 cancer (TNBC), lumpectomy, chemo and radiation, now released to the care of my family doctor. My family doctor is fresh out of training and new to me. I met her this week and we discussed that my care going forward is a partnership. She will schedule my mammograms and MRIs and she will do my physical exams every six months, but it’s up to me to tell her about anything that’s bothering me, anything new, anything that has changed. From what I’ve read on here and heard from friends, doctors will be really cautious with us and not want to miss any secondary cancer, which likely means scans and checks when anything is even slightly off. I experienced a flavour of this earlier this year. I saw a sports physician with a shoulder problem which he was able to diagnose with ultrasound, but because of my history he sent me for an X-ray just to confirm there were no cancer lesions. There were not, and we didn’t expect any, he just wanted to be sure. I realized this is how it will be for me going forward. It was unnerving (from the perspective of thinking there might be anything there), but reassuring at the same time.

As for other supports, the psychosocial supports should still be available to you if need someone to talk to, and some cancer centres run things like exercise classes for cancer patients (not sure how they are working through COVID), which you could find through your nurse navigator.

And of course you have this forum. Lots of fantastic folks who have been through breast cancer and are doing their best to live their best life. 

best wishes Essjay
Triple Negative Breast Cancer survivor since July 2018

Re: New members November 9-13

Posted by Kims1961 on Nov 14, 2020 10:09 am

CatherineS‍   Welcome!  So glad you posted. Congrats on being done treatment!  But alas , it does seem odd that we are immersed with doctors, hospitals etc and then wham! We are set free.....can be very unnerving.

I was diagnosed in 2017 at the age of 56 with breast cancer. After treatment, I felt like a ping pong ball - calling my oncologist who would tell me to connect with my family doctor, to then be asked if i spoke to my oncologist!  Don’t even get me started if you show up in ER!.  In a way, its good you GP has been clear with you, so it might be worth letting your oncologist know this.  Many cancer centres will also have nurses on call during the week or even social work staff than can help navigate the system a bit.

I’m not sure if this is an option, but is it worth asking your family doctor if she/he would be more comfortable referring you to someone else, as your GP? Even though we may be “cured” or clear of cancer for now, it will be always part of our health history.  I also gave my GP permission to conference me with his colleagues.

I was told about a book called “ Picking Up the Pieces” Moving Forward After Surviving Cancer - Kathy Scalzo and Sheri Magee.  I found it helpful in navigating this next phase of our journey as well BC Cancer has an excellent document, that may be helpful:

http://www.bccancer.bc.ca/survivorship-site/Documents/Generic%20CP%20Electronic%20-%20revised%20June%202013.pdf

Hope today is a good day.  Please keep us posted on how you’re doing.  Kim

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

Re: New members November 9-13

Posted by supersu on Nov 14, 2020 10:11 am

CatherineS‍ 

Hello Catherine!|

I just read your intro, and I thought to myself, jeez - this sounds just like me!  
I blame the 'lack of patient care/follow-up' to the COVID thing....
so....I guess the new reality is once they grind you thru the cancer machine you just are on your own.  

WE CAN DO THIS!
Can your family doc recommend anyone else who is more comfortable with this type of case???  Or call the cancer centre where you were at and ask for the patient support folks???  I was told it was useless to have any imaging until 6 months post radiation, so I am waiting for that date till I 'do anything'.  I really think that unless you are super critical NO DOCTOR is seeing anyone in person right now.

THANK YOU FOR POSTING THIS
I hope others with more experience with all this in PRE-COVID times can suggest a timeline for what is the usual care.  This forum is exceptional for knowledge sharing.....I will be following.

Take good care Catherine-
cheers
su

Re: New members November 9-13

Posted by TT53 on Nov 14, 2020 10:31 am

CatherineS‍ I was diagnosed with IDC in June 2019.  Only a month ahead of you.  I had a lumpectomy, but they did not get clear margins, so I had a second lumpectomy with the same result, so in the end I had decided to have a mastectomy with immediate reconstruction. 
When all of this started, I went thru the surgeries with a general surgeon.  He was very helpful.   I did not see an oncologist until September in Abby.  At that time, she informed me that she is going on maternity leave and she doesn't know who my ongoing onco will be. She had put me on Letrozole.  She also ordered bone density test, to make sure of my bone health was good, as Letrozole depletes calcium from your bones.  I was told that my cancer was caught early, 3mm and clear lymph nodes, so I did not need chemo, but might  need radiation if I opt for a 3rd lumpectomy.  These surgeries were a struggle for me mentally, as I have a serious medical problem with anesthetic,  Deciding whether to go for a 3rd lumpectomy or have a mastectomy was such a difficult decision.  The onco and the surgeon were  telling me it was an overkill, but for me mentally, I just wanted this over.  It took me a week to make this decision, but I am happy I made it. 
I did see a radiation onco after my mastectomy and was happy to hear I did not need radiation.
I always asked for a copy of all my medical reports.  I like to know what is going on. 
As I was sitting here and reading the reports, I found out that I have osteoperosis, yet I was still taking Letrozole, and obviously no one followed up on my test.  I called my GP to ask about this, but she told me that I have to go back to the cancer center to speak with them.  I was given an appointment with the oncologist.  When I pointed out  the bone density report, she agreed with me it was a problem.  She explained to me the cons and pros of letrozole, and because it was only giving 1% additional protection, I opted to quit taking it because it was not worth the side effects.  And she was fine with my decision. 
And she discharged me from her care.    Just like that.  Go live your life.
In her discharge letter to my GP, she has the dates wrong for my starting and quitting Letrozole, she had grade 1 cancer in one part of the letter and grade 2 in another part, it was quite unnerving for me.  I started wondering if she even read my file, since I was just a sidekick.  I eventually had all that cleared up, BUT.....
My biggest take away from this is, ask for reports and read them and advocate for yourself.  They are all so busy, it is easy for them to overlook things.
Good luck with your journey,
Hugs  M....
 

Re: New members November 9-13

Posted by A64 on Nov 14, 2020 11:10 am

Hi my name is Anne Marie and am now being treated for breast cancer for the second time. One year ago I a Her2 cancer in my right breast which was successfully treated with lumpectomy, Lymph node extraction and 20 rounds of radiation and the drug Letrozole for 5 yrs.
Exactly one year later they discovered a different cancer in my left breast. This has been treated with lumpectomy again with lypmh node extraction This is a triple negative cancer which is more difficult to treat. It is stage 2 but I do have a positive margin. I am halfway through 6 rounds of chemo followed by 20 rounds of  radiation. My surgeon then has to go back in and have the margin checked. I am hoping for the best.
 

Re: New members November 9-13

Posted by Whitelilies on Nov 14, 2020 11:42 am

A64‍  Hello Anne Marie and welcome to our caring site......we are here to support and share and more.....
so sorry for your reason.  You have already been through so much........
Yeah chemo is half over.....
I will tag
Runner Girl‍ and she may be able to share her experience as well.

Sending positive vibes your way,

Warmly,
Whitelilies

Lillian

Re: New members November 9-13

Posted by CatherineS on Nov 14, 2020 12:02 pm

Hi, I'm ok. I noticed that people post technical details of their cancer and treatment here but I know very little about mine. Knowing more than that I was stage 1 seemed irrelevant to me; I was going to do what my oncologists recommended and having details swimming around in my head that were very technical and outside my understanding would only cause me anxiety. I realize it's not the same for everyone but that's how I coped.

Re: New members November 9-13

Posted by cancertakesflight on Nov 14, 2020 1:06 pm

CatherineS‍  Thank you for your post. There are certainly a lot of technical words that you hear with a diagnosis. You wait for what seems like forever for your test results and a diagnosis and then things take off and suddenly you have so many foreign words that come at you and there's only so much you can take in at one time. It's perfectly understandable. The other confusion is that there are two ways of describing cancer. Some will talk about stages 0 to 4. Others will use TNM with numbers to describe their stage.

As for follow-up, it's almost like the medical world believes the same thing that family and friends may think. Unfortunately, the whole cancer experience isn't over the day of your last treatment, but you would think it is because, as others have said here. I was supposed to see my doctor every three months, then six months, and then annually after I finished treatments. There was nothing that really happened at those appointments. We just talked, so my follow-up was basically going for an annual mammogram. I took Tamoxifen for 5 years and then asked for a referral to my oncologist to see whether I should keep taking it. After 7 years, I asked for another appointment to see my oncologist. No one came to me to say, "Hey, you have been taking this medication for a certain period of time. Let's have you come in so that we can discuss how things are working." 

My oncologist told me that my GP should be doing a breast exam once a year. Since she never detected it when I was diagnosed with cancer, I don't feel confident that she would catch a problem if there was a recurrence.

It truly is unfortunate that we have to drive our own care. Fortunately, there is a wealth of information on this site. Reach out and someone will have either gone through what you've going through or something very similar. As Kims1961‍ indicated, there are also books that are available to you. 

Since you have finished your cancer treatments (yippee), can I ask if you are taking any medication to minimize the risk that your cancer will return? I don't know if you heard the terms hormone receptors, estrogen or progesterone positive, or ER+ PR+. These terms are all ways of indicating if your cancer was hormone driven (that is, the hormones in your body helped to feed the cancer in your body).  So, if your doctor did not recommend that you take any medication after your radiation treatments, then it could mean that your cancer was not hormone driven. 

I also think that the impact of the emotional and mental aspect of cancer is not addressed very well, and it certainly doesn't get addressed after treatments end. No one warns you that you can feel depressed after your treatments end. No one really talks about how to deal with a fear of recurrence. Those topics are extremely important and they come up on this site all the time.

Please continue to reach out. We have been where you are and will help to support you in your life after active treatments. 

cancertakesflight
Laughter is a lifestyle choice. www.laughterandcancer.com/blog

Re: New members November 9-13

Posted by CatherineS on Nov 14, 2020 2:24 pm

Thank you. Wow, your words were so on-point. I'm in tears.
No, my cancer was not hormone related. I'm on no medication for it. I know my fear, depression and paranoia is natural. I had a part of my breast cut out, toxins injected into my body, lost my hair, then lay on a table sixteen times while they shot me with radiation. Sometimes I feel like a damned superhero that I'm even still functioning. Most days I'm fine, and then I'll be loading the dishwasher or putting away laundry and it will hit me, what I've been through, and what it could mean for my and my family's future, and it will take me out at the knees.
My GP is annoyed with me. I can be demanding and get angry when I feel that I'm being dismissed by the medical community in general. My daughter suffers from anxiety and ocd and so I try to hide my emotions regarding all this from her. Consequently I tend to cry in my bathroom a lot.
Thank you for your words of support. They helped me so, so much.

Re: New members November 9-13

Posted by A64 on Nov 15, 2020 7:52 am

Hi Catherine, sounds like you're doing OK. You have the chemo and radiation behind you now. I think we all do the same thing in trying to be strong for our families. We think that if we appear strong they will think you are. However, I don't think there's anything wrong with occasionally voicing some of your fears. They might like to be included in what your going through. 
Hang in there girl. You'll get through this.
 

Re: New members November 9-13

Posted by EVH on Nov 15, 2020 7:55 am

It’s funny, back in the eighties when I was in my older teens, early 20’s, I had long hair, my friends called me Van Halen, didn’t mind being called that at all. Now to 2020, on oct 6/2020, Eddie Van Halen passed away from cancer, this was the day I was diagnosed with prostate cancer. I think I’ve cried in some way, everyday, since my diagnosis. I used to wake up before then and wonder what was on the agenda for the day, now I wake up and I think cancer
the only good thing from this is I quit smoking on that day, cold turkey and I will not be going back. Almost forgot to mention, my real name, Scott. I’m 53, don’t have the DavidLeeRoth mop anymore but tons of memories. I’m scared, I’m really truly scared of this. It’s opened a door in my body to let other cancers into my body now and I’m really really scared. 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. Times are tough with covid and all and now not only am I worried about my daughters and my fiancé, but my house and my life, I’m really hoping to work through my, oh I’m scheduled for brachytherapy and 4 wks if heavy radiation, I’m crying my eyes out right now and I can’t stop it. I hoping to work through this as much as possible, but I’ve been told that might not happen, cause you get tired a lot and you lose interest in “stuff” and omg this is so horrible, I just want to talk to people who are and who have gone through this, I’m nothing but a bag of tears and confusion. I just need to talk that’s all, I have so many questions. This is so hard, I suffer from psoriasis and I’m on meds for it and I’m really worried my derm won’t let me continue on them, I’ve been told by my “team” I should be able to stay on them but in my mind right now there is so much negative when I should be positive. Please talk to me if you want, I’m not a people person at all, but I need you guys and girls in my life right now to get me out of my dulldrum

Re: New members November 9-13

Posted by CatherineS on Nov 15, 2020 4:30 pm

A64:
Hi Catherine, sounds like you're doing OK. You have the chemo and radiation behind you now. I think we all do the same thing in trying to be strong for our families. We think that if we appear strong they will think you are. However, I don't think there's anything wrong with occasionally voicing some of your fears. They might like to be included in what your going through. 
Hang in there girl. You'll get through this.
 

My daughter suffers from anxiety and so I try to shield her. 

Re: New members November 9-13

Posted by CatherineS on Nov 15, 2020 4:34 pm

EVH:
It’s funny, back in the eighties when I was in my older teens, early 20’s, I had long hair, my friends called me Van Halen, didn’t mind being called that at all. Now to 2020, on oct 6/2020, Eddie Van Halen passed away from cancer, this was the day I was diagnosed with prostate cancer. I think I’ve cried in some way, everyday, since my diagnosis. I used to wake up before then and wonder what was on the agenda for the day, now I wake up and I think cancer
the only good thing from this is I quit smoking on that day, cold turkey and I will not be going back. Almost forgot to mention, my real name, Scott. I’m 53, don’t have the DavidLeeRoth mop anymore but tons of memories. I’m scared, I’m really truly scared of this. It’s opened a door in my body to let other cancers into my body now and I’m really really scared. 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. Times are tough with covid and all and now not only am I worried about my daughters and my fiancé, but my house and my life, I’m really hoping to work through my, oh I’m scheduled for brachytherapy and 4 wks if heavy radiation, I’m crying my eyes out right now and I can’t stop it. I hoping to work through this as much as possible, but I’ve been told that might not happen, cause you get tired a lot and you lose interest in “stuff” and omg this is so horrible, I just want to talk to people who are and who have gone through this, I’m nothing but a bag of tears and confusion. I just need to talk that’s all, I have so many questions. This is so hard, I suffer from psoriasis and I’m on meds for it and I’m really worried my derm won’t let me continue on them, I’ve been told by my “team” I should be able to stay on them but in my mind right now there is so much negative when I should be positive. Please talk to me if you want, I’m not a people person at all, but I need you guys and girls in my life right now to get me out of my dulldrum

Don't know if this helps but prostate cancer runs in my husband's family and no one has died from it yet. Most of them barely did any treatment, either. One doctor said "You'll die of old age before this gets you."

Re: New members November 9-13

Posted by Whitelilies on Nov 15, 2020 5:05 pm

EVH‍ Hello and welcome to our caring site....we listen, we share and support and more......so sorry for the "reason" to join.....we get it! we got it! we understand.
Crying is an emotion.....it is OK.....Laughing is an emotion........it is OK too....let it all out.....I would cry taking the garbage out.....I would laugh while brushing my teeth......reality hits us at odd times......I had radiation (colon).......it was hard BUT here I am......you will get through it all....you will....ask questions here....and a response will pop  up......
Please keep posting, let us know how treatment is moving along.

Warmly,
Whitelilies

Lillian

Re: New members November 9-13

Posted by MCoaster on Nov 15, 2020 5:15 pm

EVH‍    I am sorry that you find yourself here but one thing you can be sure of is that no matter the cancer type, its manifestation, or stage everyone in this community has been touched by cancer either as someone who has been diagnosed or who cares for someone who has had.    My experience with cancer was with the breast variety and as a woman I cannot comment on your diagnosis with prostate.    What I would suggest though is that if you have not already done you browse the Forums where you will see discussions about prostate cancer which have been posted by men who have been diagnosed with it.    I would also suggest, again in the Forums, that you will see topics like the Roller Coaster where posters share their experiences about the emotional impact.   If you browse in the Groups you will see there is one called Man Cave which is only available to male members.   There are also forums for family members and caregivers which may be of interest to your family.

One of the most popular ways of dealing with the stress and anxiety which seems to go hand in glove with cancer is having a tool box which may include for example, mindfulness, exercise, crafts, reading or in my case an addiction to Scrabble.   The hospital where I had my surgery agreed to my having my iPad Scrabble with me until the last moment when the anesthesia kicked in!   Living in the moment, which when you think about it, is the only thing which is real and not worrying about the past except to learn from it or the future which is not 100% guaranteed can take you down the proverbial rabbit hole.

Have you spoken to your fiancé and daughters about how you feel and how you can best support each other?   It is a scary time at the present but it is also an opportunity to really identify the more important things and work on strengthening those.

Hope this has helped a bit and please feel to start new topics if you need to.   Let me know if I can help you find your way around the site.   We are here to support you and also I also thank you for sharing as learning from the experiences of others helps us all.

Best healing wishes.

MCoaster

Re: New members November 9-13

Posted by Cynthia Mac on Nov 16, 2020 7:19 am

EVH‍ I am so glad you reached out here. I’m the daughter of a prostate cancer survivor. Dad had the disease nearly 20 years ago. 

You wrote a really great post, and one of the big takeaways I got from it is that you can see that things change in life. I’m dating a man who had the “David Lee Roth mane” back in that era, too (but I wouldn’t say that out loud to him because he is no fan of his), and he, too, reached an age where he shed that look. Thankfully, I’m still not sporting that coily perm I had in the 1980s, either! So, not only is it OK to change, it is necessary. Your cancer diagnosis is another change. 

Personally, I’m glad you’ve quit smoking. (That, too, is another change!) If I could have a superpower, it would be to help everyone in the world comfortably achieve that. My Dad was a chain-smoker, and it broke my heart to see him go back to it after every time he quit. There’s been a discussion on this site around the stigma of lung cancer because of smoking, and it has been pointed out several times during that discussion that there are many other cancers that can be caused from smoking. Prostate and bladder cancers are two of them.

Being scared is a very normal reaction to any cancer diagnosis. That doesn’t mean that you can stop “scared” with the snap of your fingers. But, you can go back to thinking about your agenda for the day, even though you have cancer. You might need a little help with getting there, but you can get there.

You have a lot of worrying, negative thoughts flying through your brain right now. Again, this is something that happens to a lot of cancer patients. One of the things I suggest to people is to focus on what you know for sure. Do you know for sure that this experience has “opened the door” for a future experience?” Do you know for sure that you’ll be able to work through this? Do you know for sure you’ll have to go off your psoriasis meds? Mmm. No, and in the last case, your medical team seems to think the opposite.

As MCoaster‍ said, there are things you can do to try and chase those nasty “what if” thoughts away: mindfulness, meditation, and distractions such as video games and reading. My “go to guy” for mindfulness and meditation is Jon Kabat-Zinn, a Ph.D. In the US who works a lot with patients who have chronic pain issues. Two of his books are “Wherever You Go, There You Are,” and “Full Catastrophe Living.” The former has several meditations that can help. Both books are available in audio and hard copy formats. There are many other resources out there, too. I found a 21 day meditation series on Audible that is really good - I think if you search Aptive in audible, you’ll find it. 

Other distractions can be making sure your house is ready for you and set up for post-surgery. Can you make up school lunches for your daughters ahead or bring in supplies for those lunches to get them through? Can you put the bikes away in the garage so you’ll have room on the floor to keep the car inside so you don’t have to clear snow off it? Every minute you spend planning is a minute you don’t spend worrying.

I’m going to tag Jackwb‍ , and  WesT‍. They are both prostate cancer survivors, and even if they haven’t had brachytherapy, they will know of others here not he site who have, better than I will.
“When the root is deep, there is no reason to fear the wind.” - Japanese saying

Re: New members November 9-13

Posted by Fiver2020 on Nov 19, 2020 3:33 pm

Hi - My name is Tove and my husband has follicular lymphoma. He had an initially successful round of chemo/rituximab a year and a half ago, but we just learned the Rituximab was not actually effective for him and the lymphoma seems to be returning. I am feeling very overwhelmed and anxious, so looking to find others to talk to who know what we're going through. I am glad to know this forum exists.

Re: New members November 9-13

Posted by MCoaster on Nov 19, 2020 5:39 pm

Fiver2020

Welcome to our community which I hope will be a real and useful support to you.   Your photo says it all and many here will certainly relate how you are feeling.  We have all been and are still being effected by this horrible disease.   Cancer has both physical and emotional stresses both for the person who has been diagnosed and also to those who love and care for them.  

I had breast cancer but when I looked on "Search the community"  follicular lymphoma several posts came up.   I would like to introduce you to @Dinooo‍ and bethS‍ who have both recently posted about this type of cancer. Dinooo‍ and bethS‍ any suggestion for our new member?   Sometimes the stress of being a caregiver is very debilitating and you may also wish to browse the "Caring for Someone with Cancer" which you reach from "Forums".    No matter which type of cancer the emotional impact is so very real.

Do and your husband have support in your community and through his medical team?

We are always here to share, to ask for and share knowledge and to listen if you need to vent.
 
I am so glad you reached out.

Warm thoughts.

MCoaster

Re: New members November 9-13

Posted by MCoaster on Nov 19, 2020 9:13 pm

Fiver2020‍ 

I am am sorry that I had to shorten my last reply.

Have the oncologists suggested an alternative medication or treatment?   It must be hard to find out after a year and a half that treatment has not been effective.   

Are you able to take some time when you can recharge your own batteries?   Social activities are difficult because of COVID but can you have a “no cancer time” when you spend time outside, listen to music, do a craft, chat to friends or anything else for you?  Obviously I don’t know how you deal with anxiety and stress but quite a few here find mindfulness, meditation and exercise help to divert their attention.

Take care of yourself as well as your husband.

We are here for you.

Kind thoughts.

MCoaster.  (again)

Re: New members November 9-13

Posted by Dinooo on Nov 20, 2020 12:49 am

Fiver2020:
Hi - My name is Tove and my husband has follicular lymphoma. He had an initially successful round of chemo/rituximab a year and a half ago, but we just learned the Rituximab was not actually effective for him and the lymphoma seems to be returning. I am feeling very overwhelmed and anxious, so looking to find others to talk to who know what we're going through. I am glad to know this forum exists.

Hi Tove,
I am sorry to see that the Lymphoma may have come back with your husband. I have Non-Hodgkins lymphoma low grade B cell , and just finished my treatments which was 6 rounds of Chemo/Rituximab about 6 weeks ago and have a cat scan scheduled tomorrow to see if it got rid of some tumors.  
 I also have a friend that also has NHL although it is a little different then what I have. He is having some trouble with his treatments. He has had 2 rounds (out of 6) and ended up in the hospital for about a week each time as he broke out in huge red rashes and was quite painful. It turns out he is allergic to Rituximab, he said he has a appointment with the oncologist to decide how they will proceed. I will keep you informed on if they are using any new drugs and how they proceed.
One thing my wife did during treatment was take a day, and get out go for a hike, or canoe with a friend. Maybe once a week. I would have another family or friend member hangout with me if I felt like I needed someone. 
 Something that has helped me is I meet with a family councillor who has helped me come to terms with a lot of emotions I have.
Please look after yourself and take care.
Dean
 
 

Re: New members November 9-13

Posted by Fiver2020 on Nov 20, 2020 1:53 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.

Re: New members November 9-13

Posted by MCoaster on Nov 20, 2020 2:46 pm

Fiver2020‍   Yes, the waiting is the worse.  I can face most things in life except for the unknown and sometimes even have to take my own advise to live in the moment because the only use for the past is to learn from and the future is only speculation.   Advice is so easy to give but harder to follow as I know from experience.  Personally I am a Scrabble addict and use that to reboot if I find my mind going to dark places.    Is it possible to ask to have PET scan done earlier should there be a cancellation?

If you look at the list of members you will see there are many, including me, who are also from BC.   It is so good that you have access to the BC Cancer Agency and it is a good place to be as their counsellors are experienced in working with people who are being effected by cancer.    Finding the "right fit" is so important.    Often members here have found support from those whom they least expected to receive it and the people who they thought would  support them have not been able to for various reasons, sometimes because they do care but do not know how to help.   It is hard not to have physical contact and I certainly miss grandkid hugs but even a very short FaceTime (they are 5 and 8 and very active) and messaging and phone my children is better than nothing.   Every relationship is different but your sister might welcome knowing how she can support you.    Talking, an interactive game such as Scrabble, shopping anything so that when you need to take your mind off the unknown future she understands.   How old are your nephews?

We and I are certainly here for.   If your husband would find it helpful he is of course welcome to browse and post here.

You are in my thoughts as I look over my bit of BC water.

Take care.

MCoaster