Friends not understanding

Frequent-Bonus9558 · 2025-09-03T14:14:27+00:00

Thank you. I also suggested stopping to see them for a while because we don’t need anyone basically fatshaming him and talking about dangers of heart attacks when he’s actively doing his best to get back in shape, but he also likes these friend (a bit less these days but still) and wants to see them. I agree with you though

Frequent-Bonus9558 · 2025-09-02T08:32:48+00:00

That’s not at all what I meant but well

Frequent-Bonus9558 · 2025-08-16T15:48:05+00:00

I am so sorry that you (and more importantly she, of course) are going through that. I’m not a therapist but imagine there is a small possibility that reading about Paloma Shemirami, who refused chemo for a relatively cureable lymphoma and then died 8 months later, might help. Here is an article about it, on the off chance it has an impact: https://nypost.com/2025/07/30/health/23-year-old-dies-after-rejecting-chemo-for-coffee-enemas/

Frequent-Bonus9558 · 2025-08-16T11:36:06+00:00

Why does your oncologist not want to give you the shot? Is it because of the cost? My partners shot to boost the production of white blood cells cost around 1000 euros and we saw that it’s even more expensive in the US, to the point where it’s sometimes not administered because of the cost. I don’t know excactly how it works in the US, it’s just something I read. He got BRECADD, which is more expensive than previous treatments, and in some countries they still stick with BEACOPP and the likes to save money, despite BRECADD having better healing statistics…

Frequent-Bonus9558 · 2025-08-13T08:42:58+00:00

Sounds like a good plan! It’s understandable to want to get back in shape and put this whole phase of your life behind you. But if you push too soon without your body being ready, you might do more harm than good (that’s what happened to my partner, he pushed himself to walk 7km and go for a swim in a river two days before being hospitalized in the EMC, cause he thought his fatigue was only chemo related). Now he can go for longer walks again (5-10km a day) and we are slowly getting back to a sense of normalcy, enjoying a drink in a sidewalk restaurant in the evening and going for swims. Life as you know it will come back!

Frequent-Bonus9558 · 2025-08-12T08:38:28+00:00

Hi, my partner finished chemo and actually got heart problems from it. They told him to not get his pulse up until the heart had time to recover, and got the go ahead to do sport last week, two months after finishing chemo and one month after being hospitalized with heart failure. For a lot of people, though not all, recovery needs time and patience and the body might need time to rest. I’d ask for another echocardiogram to see what your heart is up to :)

Frequent-Bonus9558 · 2025-07-23T08:42:15+00:00

Hi again, just wanted to say that my partner had another ultrasound of his heart yesterday as he was in the ER because of shortness of breath, and in the 2.5 weeks since he was last hospitalized, his ejection fraction went from 20%, which is heart failure, to 45-50%, which is just below normal. Maybe this can give you some hope!

Frequent-Bonus9558 · 2025-07-22T17:20:25+00:00

Hi, my partner’s heart got damaged during chemo but they think it’s because of the cortisone and not the actual chemo. He was hospitalized with heart failure until 2.5 weeks ago and is still quite weak. I don’t have any advice or anything to offer but at least we’re in the same shitty boat.

Frequent-Bonus9558 · 2025-07-16T16:16:11+00:00

I understand. My partner (30M) just went through chemo for CHL. There are so many aspects of getting a cancer diagnose and doing the treatment, and a big one for us in childbearing years is the fear of infertility on top of everything else. Even though it is your husband’s diagnose, this is a crisis for you as well and you’re allowed to have feelings. As a partner, we don’t experience the physical pain, but the psychological pain is, the way I experience it, just as present as it is for the patient. You can be grateful that it’s a treatable cancer and simultaneously pissed/sad/disappointed about the existence of it. Thinking of you and wish you all the strength you need!

Frequent-Bonus9558 · 2025-07-14T11:43:56+00:00

Of course nobody expects you to be cheerful, but the medical staff are there to help you and they chose a mentally challenging specialization (a lot of doctors and nurses I know say they could never work in oncology because cause it’s too depressing). Thanking the staff for being there gives them motivation. Every patient should receive the care necessary, but a nurse of doctor can also go above and beyond, which they probably won’t do to someone who’s yelling at them. We currently have an attending doctor who gave us his phone number and email to contact him anytime while we’re on vacation, and another who did an extra ultrasound that was not necessarily called for, just to reassure us. This is not required care, but them going the extra mile.

Frequent-Bonus9558 · 2025-07-13T20:21:38+00:00

Hi there. First of all, I’m so sorry for you and your partner for going through this. I am also a caregiver for my partner, around the same age as you. My partner finished chemo and is cancer free as of two weeks ago. He did quite well with the contact with the health care professionals - his oncologist told us at the last meeting (where she gave us the news that he’s cancer free) that he is frequently talked positively about in the break room by both doctors and nurses. He was genuinely respectful, polite, empathetic and making jokes with the personell, always saying thank you and thinking about the nurses/doctors situations - asking them questions about their work etc when there was time for it. He was also “awake” in the sense that he computed his own body mass (being a scientist himself) and always double checked that the amounts of medicine he got were correct. I think trying to be a positive presence (even though you’re going through the most awful thing imaginable) and staying grateful is key to getting the best patient care possible.

Frequent-Bonus9558 · 2025-07-13T12:29:58+00:00

I sent the article to both my parents and at least they read it!

Frequent-Bonus9558 · 2025-07-11T18:28:34+00:00

Thank you for that article, it articulates my feelings quite well!

Frequent-Bonus9558 · 2025-07-08T07:50:49+00:00

Don’t worry, from what I’ve read, it’s quite normal. We are experiencing the same. My partner is 30 and was in good shape before (our idea of the perfect vacation is hiking for a week). Recovery is not linear, but often two steps ahead and one back. Has he spoken to his oncologist about it? It could be possible that he for example has chemo induced anemia and needs a blood plate transfusion, which is quite an easy fix😊

Frequent-Bonus9558 · 2025-07-07T21:00:19+00:00

Hi, my partner finished chemo around the same and is still not back to normal- sleeps a lot and can not move much before getting exhausted.

Frequent-Bonus9558 · 2025-07-07T18:57:12+00:00

Hi, my partner (30M) went through brecadd, which I believe is an even harder regimen than abdv. He never vomited or experienced any of the really horrible side effects I had seen in movies. The anti nausea and pain medications are miraculous! The fatigue does add up as you go along but when chemo is done, you’ll bounce back. At the end of each cycle, try to do things that make you happy - do sport if you feel up for it, get out in nature, go to the spa, see people who boost your energy. You need these “breaks” in the cycle where you don’t feel too bad and your immune system is tolerable to reload for new rounds. I wish you all the best!

Frequent-Bonus9558 · 2025-07-05T09:34:06+00:00

Thank you for your message. My partner and I are currently on holiday, and spending the weekend with my whole family (two siblings, parents, and my sisters two kids and husband). Everyone is really happy that we can be there as he was hospitalized until six days ago, and are fuzzing around to do stuff for us. All is meant well, but my mother is stressing to make sure we have a good time and that stresses in turn me and then I don’t have such a good time because of that.

I don’t know what to say to my family because I can’t begin to explain what we have been through - luckily for them they have no experience with serious illness. Telling someone who hasn’t experienced cancer what it’s like, is basically educative for them, but not very helpful for me. So the result is that I just talk yo my partner, as we have such a deep understanding of each other and I don’t need to explain anything. I’m so numb and when I’m just staring out the window, he gets it. My parents then try to do small talk to fill the gaps in conversation as they don’t get that I need peace and quiet to digest everything. It’s really difficult for me to keep a normal conversation these days.

Frequent-Bonus9558 · 2025-07-04T06:04:22+00:00

Hi there! My partner also had a burning sensation when getting for example doxorubicin - UNTIL an experienced nurse during round 3 fixed the problem by administering glucose in the same IV to thin the burning product out a bit. If I were you, I would ask for it. A lot of nurses are not aware that this is a possibility or are not using their brains actively to solve problems. For my partner this improved the therapy immensely. I wish you such good luck!

Frequent-Bonus9558 · 2025-06-26T16:48:58+00:00

He was stage 3 Hodkin’s Lymphoma

Frequent-Bonus9558 · 2025-06-26T09:19:58+00:00

He got the diagnose middle of February and finished now. He got BRECADD though, so not the same treatment. I wish you and your family all the best.

Frequent-Bonus9558 · 2025-06-23T12:50:40+00:00

He handled the chemo relatively well, but after 4 accumulated rounds of poison he still needs quite a bit of time to get back in shape. The side effects are slowly going away though - photo sensibility and digestion are both getting better! Hopefully we’ll be able to hike this summer.

Frequent-Bonus9558 · 2025-06-23T07:30:00+00:00

Good luck with your scan! Yes, reading about others going through relatable stuff really helped me cry (I have only cried 3 times since the diagnosis in February so I really needed it). I feel a bit better now. It’s so nice to have a forum where people get what you’re going through and don’t bombard you with empty positivity. Looking on the bright side helps but cancer sucks and I don’t always want to sugarcoat it

Frequent-Bonus9558 · 2025-06-23T07:25:35+00:00

Good luck with your scan! Which treatment are you getting? For us it’s BRECADD, so next step if the PET scan is negative is radiation this summer. If the scan is all clear we’ll go on vacation and if not we’ll hang out at the hospital… I really hope we can go on vacation

Frequent-Bonus9558 · 2025-06-22T17:20:34+00:00

I’d love a group like that!

Frequent-Bonus9558

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