The Colon Club

Hey all, looking for knowledge/experience/insights for a conversation I'll be having tonight with my girlfriend of 9 months. We met well into my cancer fight and she's been very supportive, incredible really to take on a new relationship with someone with stage 4 cancer.

Since we've been together my treatment plan ha been consistent bi-weekly FOLFIRI+Avastin, a couple hospitalizations for infections and delays from low counts thrown in of course.

I am going back to Mayo in a few weeks for scans and multiple consults to discuss a potential change in direction of my treatment. Possibly a very good thing.

She says she wants to come to these appointments. I'm comfortable having her there, am completely open about my disease, treatment, etc. But am still unsure if it's a good idea.

Would appreciate input on things we should discuss prior to making the decision. Thanks!

Are you sure you’ll have that decision to make? Most medical centers are not allowing anyone but the patient (unless the patient is near death).

I think if I were in your shoes I would just discuss what you want her role to be and not be. I rely on my husband to be the note taker and the hard question asker, for example.

Gina's right, I really doubt she'd be allowed in on appt. My husband can't even come into the building when I go for chemo. And it is getting pretty hot here in Texas. Maybe you could record the appt, for her to hear later. And maybe she would have input you could use for future appts.

As of today, Rochester is allowing one person to accompany to the outpatient clinic. Obviously this could change. In that case, dilemma resolved.

https://www.mayoclinic.org/covid-19/rochester

I'm more concerned of how she'll react if I get bad news. She says she'll be prepared and knows that's a real possibility.
Previously I've had my parents really want to come to appointments, and I've allowed it. I know it's because they want to provide support for me, but the reality is generally more I feel obligated to put on the happy soldier face and take care of them the whole time.
I've told her that, and she's says she understands. But I know if she's struggling or breaking down, I'm gonna go ahead and put on the smile and take care of her rather than my own emotional needs.

IF you want her there, then insist that she be allowed to join you at the appointment. It's reasonable - in this strange times - to say she can't join you for a chemo infusion but it's unreasonable for her to be excluded from doctor's appointments. It's in those appointments that you discuss what's happening, treatment, etc. That's she's your girlfriend is not the point ... she's your CAREGIVER. Having cancer and navigating the system is hard enough and it's totally unreasonable to expect a patient to do it on their own when someone's standing by to step in. There will be so much information that you will miss because it's information overload. Having a second set of ears, especially ears that will be helping you through the process, is critical. Insist. Provided she has no temperature, faithfully wears a mask, adheres to all safety measures, and is respectful of the process and your time with the oncologist, there's no reason for your caregiver to be excluded. Your oncologist should be welcoming and encouraging your caregiver to be available for the appointment. If she can't be with you in person, then your oncologist can make alternate arrangements for a video or phone appointment. There are ways around this. Be firm but polite.

Just my two cents...

My wife also wants to attend, but it's prohibited right now. Our solution is for me to call her on Facetime once I'm in the room with the oncologist. The doctor was completely comfortable with her listening in and asking questions during the appointment.

I agree with zephyr. Last week at center a man and wife came in, both in masks. The man (patient) had oxygen with him. Receptionist informed them that it wasn't on file that he could have a visitor with him. His wife said "well he is so please update todays visit." The receptionist made a call to who ever and it was OK then. BUTT, the wife asked about the bathroom and receptionist told her she could not use the facilities. Crazy!!!! So, she had to leave, find a public restroom and come back. Are you kidding me, good way to spread the virus is all I could think about. She told her husband if they call him back for appt before she gets back not to go right then to just tell them he is waiting on her to go to gas station to pee!

I think it should really depend on how you feel about your relationship and where it might or might not be heading. Which is a completely different question than the medical/procedural ones.

boxhill wrote:I think it should really depend on how you feel about your relationship and where it might or might not be heading. Which is a completely different question than the medical/procedural ones.

What boxhill said.... 100%

So many energies at work here with your sitrep that it is really, truly NOT
about the disease inside the patient.... It really is about YOU, the patient inside the disease.

My wife would always want to support / accompany me. I love her and valued her support, BUTT ...
frankly did not need hand holding, from my perspective. Sometimes though, I needed to allow her needs,
sometimes I did not, because I did not need the support.
(( 30 + years medical experience and caregiver support already on my own resume BEFORE I became a CRC patient ))

This will now be NO help I am sure ... BUTT
my situation is not yours

YOU as the patient NEED to have exactly what you NEED to move forward

IF you NEED her there ... question solved
IF .... you NEED to be solitary, in your own space with the treatment process, then
You NEED to have that

It IS great that she wants to be there to support you ... BUTT
if that is what she wants, and not what you NEED
you NEED to have a serious chat about it.

Sorry buddy BUTT a cancer Journey is the ultimate reality therapy for life issues.

BTDT
and still on the Journey

Cheers and best wishes to both of you
CRguy

“A cancer journey is the ultimate reality therapy for life issues.”

Amen.

Do not feel guilty if you tell her not to come. You need to do YOU at this time in your life. My experience was that I did not want ANYONE around me during, treatments or after surgeries. It helped me and them in my opinion.

We are all different. I never wanted or had a "care giver". I am interested in and understand medical stuff. Other than the first onc appt, I never had my husband come with me. Not that he's bad, but he doesn't "do medical" and I wanted to handle this on my own. And, just me, I preferred to absorb whatever info - good or bad- before I discussed with (or not) with my family.
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As I said we are all different - if you want a "care giver" and your girlfriend can fill that roll, then let her come. If you'd rather be alone that is 100% normal. If you are not sure, then let her know - go to one appt - see how you feel and then decide if you want her present in further appts.

Take care,

You do what you feel is best. If you are concerned about the need to put on a brave face, then tell her that. Whatever you do, be honest. I like to go to any big appointments my husband has because I always have questions. He rarely asks any and I tend to come up with a lot. I had originally gone to all his chemo infusions as well. That eventually stopped though as I think he felt he needed to stay awake for me there and some of those meds just knocked him out. We got into a routine where I would go in with him and hang out till they got him accessed and started the pre meds. Then I would head out and come back right around the 5FU bolus. Eventually the clinic got so packed there weren't chairs for visitors and that ended all of that. I stayed his taxi though! I will say this though, and I know I'm in a different position as we are married with 3 kids, I appreciate being involved and I am glad I know exactly what is going on. My husband would be in every way right to keep it all private if he wished, but we have a shared life and it comes with the good and the shit. I have been able to better advocate for him when he was not able to (usually when he has had serious infections that needed urgent attention) and my knowing the ins and out of his disease have made me able to do that.

I wish you the best of luck with your appointments and your relationship! May both be nothing but good news!

Thank you all for your thoughts, sincerely.

In the end I did bring Laura along on this trip to Mayo, and it went very well. Am very glad she was here. Certainly doesn't hurt that most everything we heard was good news.

Hot spot lymph nodes are still enlarged on CT scan as expected, but nothing new. Big bonus is the PET scan showed no uptake at all. No metabolic activity in the enlarged lymph nodes or anywhere else it shouldn't be.

Stopping chemo and will be starting radiation imminently.

God Bless!