Posted by Lunarcom on Feb 8, 2019 2:19 pm
Like most people though I dread the delay from a scan or test and then the review with the Dr. I would prefer to see the PET Scan results as they are done. As an active patient you get knowledgeable on what to look at and then have a chance for form questions for the dr. I know that is not for everyone but for me I prefer to have access to the results and I can do research in advance.
Posted by Goodtogo on Feb 8, 2019 2:25 pm
Posted by Amfia on Feb 8, 2019 2:25 pm
Anyone in a similar boat that can give me words of advice?
Posted by Runner Girl on Feb 8, 2019 2:42 pm
For my echocardiogram appointments I don't really need to do much other than show up and also get my bloodwork done as they require.
For any needle stick appointments I make certain to hydrate exceedingly well the day before and the day of. It makes it much easier for them to get a vein without jabbing me multiple times.
For actual oncologist appointments I do my homework. I keep a notebook and fill it with discussion items. At the current time I have a dozen questions to ask my oncologist later this month. I also try and go in with an "aggressive" frame of mind rather than "passive" because I want answers to my questions and I will question his responses if I don't understand or don't agree. But don't get me wrong, I don't go in nasty aggressive, I'm nice as pie, just firm in what I want. An example is when I started this process and they reviewed my medications and requested I stop using metamicul. I flat out told them "NO - if I don't take it daily my IBS - D (diarrhea) will get out of control and there is a good chance I could S--T my pants!". They allowed me to continue using it.
I feel really grateful to have all these wonderful health professionals doing their very best to get me thru this and keep me alive.
Posted by prairiemom on Feb 8, 2019 2:46 pm
Our doctors surgery pretty much operates on a "no news is good news" with bloodwork / xray results and the like, and you have to make an appointment to get your results. That did change a little when i was going through treatment, though. My family doctor, who is awesome (and has a porn star name, bless him), put a note on my file that if i called needing to see him, i would be seen within 24 hours, which i was grateful for, but didn't abuse. After my double mastectomy, I had this gut feel that i was starting post-surgery infection, and went to see him. I'd had a seroma that caused an infection after my lumpectomy 4 months earlier, and ended up back in hospital, and wanted to avoid that scenario if i could. He sent me for blood work, but trusted my instincts, and knowing what had happened before, prescribed strong antibiotics. He phoned me the next morning, to tell me my instincts were right, my blood work showed i was fighting an infection, and to stay on the antibiotics. I loved that he listened, and didn't act all "I;m the doctor here" - with the seroma infection, i'd seen him on the Friday, but things were ok at that point, and it all went crazy on the Sunday, when my boob starting leaking green icky fluid. so gross! He phoned me at the time when he got the notes saying i was back in hospital and phone to apologize for missing the signs on the friday.
Posted by prairiemom on Feb 8, 2019 2:57 pm
Thank god for my husband, who was, and continues to be a rockstar. I remember crying one time and apologizing to him, saying that he hadn;t signed up for all this when he married me, and he replied "well, you didn't either, and I know you;d be there for me if the roles were reversed. He came to every appointment with me from the time i was diagnosed until my last surgery (due to me being BRCA1 +, I ended up having a lumptectomy for the actual breast cancer, then a double mastectomy and complete hysterectomy. He would take notes, and we'd write down the questions we thought of prior to the appointment.
I have heard of people recording their appointments too, so they can play it back as many times as needed to understand things. Our medical team at the cancer treatment center were awesome, and would take as long as we needed to get all our concerns and questions addressed. I felt really lucky to have a team like that, as I have heard of other people at the same center (the Cross Cancer center, in Edmonton) having less great experiences.
I know a couple of the facebook groups I am in were great for supporting newly diagnosed people, and had checklists of questions to ask various people like surgeons, radiation oncologist, chemo oncologist etc.
Posted by Tyka on Feb 8, 2019 3:00 pm
Posted by prairiemom on Feb 8, 2019 3:04 pm
Posted by Cynthia Mac on Feb 8, 2019 3:22 pm
One thing I want you not to be afraid of is if they start using the word “palliative.” In terms of cancer, it isn’t what you would probably think. Palliative in cancer circles means a treatment plan intended to give quality of life. In some cases, it does tie in with longevity, but not always, and I wouldn’t want you to be alarmed if you were to hear the term.
Runner Girl , your point about good hydration for 24 hours before anything involving a needle is good advice!
As a caregiver, I try to take my behaviour model from the staff at the hospitals - friendly, and professionally assertive. I don’t “baby” Dad along, but I do remind him things like when to stop taking his Aspirin, or to bring his “health book” with him in the same manner his health care staff would. He and I have great respect for his medical team, and I make sure that is expressed, too - to paraphrase Runner Girl: you get more flies with honey than with vinegar!
Posted by Joanniem on Feb 8, 2019 6:05 pm
Posted by Yogasoccermom on Feb 8, 2019 8:54 pm
I have always felt that my appointments were bringing me closer to winning this battle, so I have always viewed them as positive. Even when I had to go back in for chemo while still dealing with the symptoms from the previous round....I tried to see it as one step closer to finishing.
I will be seeing my oncologist next Tuesday for the first time since finishing chemo and radiation, so the list is well on its way! I will be asking about follow up scans, bone density test and a progressive return to work. Anyone have any other suggestions?
Posted by Kathy49 on Feb 8, 2019 10:03 pm
I am not a caregiver except for myself, and I have no one helping me or taking care of me (even though I do have a married brother who is a doctor). I try and do as much as I can for myself, and I don't worry about the rest for now i.e. like washing the floors, changing my sheets etc.
I have an appointment to see my family doctor in two weeks and he is very friendly so I don't have worries there. I will be asking him to check the wound, and also give me a referral to a reconstruction surgeon to rebuild my breast. I wish that could have been done at the same time as the mastectomy but there you go. I never thought about it, so I didn't ask if it could be done.
I haven't got my Tamoxifen pills yet, after my mastectomy at Christmas 2018 I've been depressed and can't seem to get energy to leave the house (except for the trip to Ottawa) so I haven't been to the pharmacy to get the pills yet. I'm hoping I can go in a day or two because I want to see if I will have any side-effects and I'd like to know that before I see my doctor.
I wish everyone a gentle and fast recovery. Kathy49
Posted by Brighty on Feb 9, 2019 12:08 am
Posted by Quinn on Feb 9, 2019 2:47 am
Posted by princessmaura on Feb 9, 2019 8:25 am
I think that the bottom line is that we have to trust our doctors and feel comfortable with them caring for us so it's important to change doctors if you feel that you are not receiving the optimum care available...
Posted by rainbowpromise on Feb 9, 2019 12:19 pm
The past few years have opened my eyes to my reactions over all of my life. I can boil it down to every major upheaval in my life going through the five stages of grief and loss.
Denial and Isolation -
I took my husband in to the hospital because he was short of breath. To my untrained eye he had undiagnosed, but potential life threatening diabetes. I could use those words "I told you so" to back up what I had been telling him for years. I was in shock when it was a heart condition and even bigger shock when it was cancer. Suddenly we were alone in this. Or rather I was alone because my husband just dumped it all on me. At the very first doctor's appointment where the word "cancer" was used, my husband shut down his mind and the doctor had to come out and get me to hear what he had to say.
I had this same feeling of isolation and denial when I had a heart attack and drove myself to the hospital. I had it when my granddaughter was diagnosed with a list of allergies so long that it was impossible to find food for her. I also had this reaction when my son was given little chance to live as a normal human and taken for brain scans at birth. One more time that I vividly remember this stage was when I left home for the first time.
I hit this stage fairly quickly after the first diagnosis. I was angry at my husband specifically for not being there for me and yet I was forced to be there for him. I had to attend every appointment and be at his side to listen to the doctor. I saw things that I had no idea about with my husband's health. Then I was angry because he was blissfully unaware and hiding in the denial stage. He was convinced that the doctors would cure him.
This is the stage where I started managing the appointments. I had a daytimer in my purse and a 4 month wipe off calendar on my wall. I planned and left reminders everywhere. I even tried bargaining with the doctor over my own health care needs. The anger was still leaking through at every appointment for my husband as I sat next to him and took notes. He was still in the denial stage which was evidenced by what he told his brothers when they phoned him.
Here is where I think my husband started coming out of the first stage. I set up the phone next to his chair but he still wasn't able to catch the phone within five rings. I watched him once, not because I was testing him but because the other phone needed charging and I couldn't get past his chair. It took him two rings to realize it was ringing at all and then two more rings to get his chair in position, and the fifth ring was spent turning down the sound on the TV.
All he did was watch TV. All I did was play online games.
This is when I started bringing a notebook to appointments. I did all I could to keep my husband talking about his childhood and the times he had with his brothers as a young adult. I knew he was dying and all those memories would be gone. I wrote them all down. Of course I have to spend some time with his three surviving brothers and confirm some of the info,
During this time people saw a devoted wife and a happy married couple. I am glad we had that time.
Overall, even though I worried about overlapping appointments there was only one. I was scheduled for a breathing test in a hospital 20 minutes to the west on the same morning that my husband was scheduled for chemo in a hospital 30 minutes to the east. Obviously the breathing test was rescheduled.
Posted by Essjay on Feb 9, 2019 1:04 pm
I have found everyone works really hard to make you comfortable, and here in Manitoba your consultations are recorded for you so you have a record of what was said (super helpful for reviewing with husband). I make notes of things I want to ask and get my notebook out and I’ve found that the oncologists are very accommodating about giving me time to ask them. I try to be informed so I can ask questions that help me make decisions about my care with the doctors.
Technicians running tests ears are super-awesome, making me comfortable, telling me what is happening, when results will be available etc. It’s been very reassuring. I have been amazed at how quickly tests happen eg bone scans, CT, when it’s cancercare, versus for other reasons.
im going through chemo at a Community Cancer Centre, just 15 minutes from home and very friendly, with lovely staff. I have chemo every 2 weeks (I’m halfway though 8 cycles), and I have blood tests and a doctor visit the day before chemo. I find these appointments tedious - I should be in and out, but I’m left sitting around waiting for the doctor. I don’t like the questionnaire I have to fill in every time - the questions seem subjective, and many of them are pointless. I really shouldn’t have to answer the one about whether I’ve smoked in the past 2 weeks when they have it on record that I’m a non-smoker but I get ticked off for ignoring it. The focus is on how I feel ‘today’, and in the past 5 days, but actually I feel the worst during the first 7 days, which are not covered by the questionnaire. And then there’s a half page asking about spiritual and emotional stuff that I am never going to discuss with a doctor in a million years! Last time a student doctor came in to examine me, did a half hearted job and got sent back to do a better one - I wasn’t given a choice about this. Then the doctor came in and did the same. I had a headache and was not really wanting to be touched, so I was pretty tired and fed up by the time I left. I know they have to be thorough, but it all gets a bit much. Next time I want to talk about the drugs and side effects to expect because I switch from doxorubicin and cyclophosphamide to Paclitaxel and I know things are going to be different for my body.
Posted by cp on Feb 9, 2019 1:27 pm
Check Lists and what I call the Cancer Bag. The bag sits by the door ready to go at a moment's notice. We call it Justin. "Just In Case". In that bag I carry my notes from every meeting, Doctor Reports, Lab Reports, reading glasses, a good book....in case, Tea Tree Oil for the tip our noses, hand lotion, all on my Master Check Lists. Oh and don't forget a clean pair of socks, undies and a ziplock bag with 3 days of your regular meds (both of you).... like your BP Pills or statins. Some prefer to have the Cancer Bag in the laptop. Me....I like hard copy. We have had the Doctors refer to my notes. Sometimes our interpretation of Doctor Speak is not quite right. I review what I have written and get things clarified with them. The Doctors appreciate the efficiency. I am there on business not to visit.
Appointments should be viewed as one step closer to a find that will make everything right again. Nothing will ever by right again but know that you have the best possible team of medical professionals working for you. This appointment could be better news or a better treatment has been found. Hope. Smile and fill up the wrapped candy bowl in the Chemo Room once a month. It will make you feel wonderful.
Know that each and every one of us is standing behind you every time the phone rings and it is yet another appointment. You can do it.
Posted by jorola on Feb 10, 2019 1:01 am
One thing Mick did is if when he was in for chemo treatments and he was sitting with elderly patients he made it is mission to talk to them and make them smile. Most times the women would be there alone and he would talk, joke around, tease and even flirt a little with them. He would have them smiling and giggling in no time. How could I not love and be proud of this man, sick as he was, seeing these poor women alone and scared and doing anything he could to make things better, less stressful and scary. With the older men he would get them sharing their knowledge. Mick respected those with more real life experience and who could teach him. He always found something to learn. Once he even learned how to make moonshine at a chemo session. We all know how those appointments can be scary, draining mentally and physically, depressing, and stressful. There often are people like nurses, doctors, aids even other patients who go above and beyond to help patients. If you have met such a person give them a smile, a thank you or better yet pass it on and help others. You too may help someone on their journey and make a difference for them, even for a moment.
Posted by June Bug on Feb 10, 2019 10:50 am
Posted by Cynthia Mac on Feb 11, 2019 7:52 am
During Dad’s chemo sessions, he and I would chat with the others around us. I was amazed, too, that so many people did chemo “solo.” It made me realize that not everyone’s family “does the whole walk.” I also saw people who looked like they were heading off to work after their appointments, too. Like Mick, I like to try to bring whoever I encounter a little bit of cheer, a smile or a laugh. And I’m the same in that if someone is really helpful, I make sure they or their superiors are made aware of that.
Have you thought about having a retirement party for Mick’s binder? Maybe take it with you for lunch, thank it for its years of service and wish it a happy retirement on the lower bookshelf in the basement (or buried in the back yard)? We are creatures of ceremony, after all.
Posted by MrsBH on Feb 11, 2019 10:39 am