#patient experience

[yaminahsaini]

🇲🇦Monday, July 21, 2025: So here we are, the day after my visit to the emergency room. Unfortunately, I woke up with the headache still very much present…

But good news: I finally found a place to rent oxygen tanks! Of course, it’s not free here : €50 per tank with a high-concentration mask. Thankfully, it will last me long enough until I return to France, so that’s fine!

Just to clarify in relation to my previous post: they obviously didn’t charge me anything since they didn’t do anything.

So now I have this oxygen tank, but it’s different from the ones I usually use. It’s the same oxygen molecule, of course, but the system here is much less precise, older, and the tank is heavier even though it contains less oxygen than my 15L tanks in France which are the same size.

Here, there’s an integrated humidification system that’s supposed to prevent nasal and throat dryness during prolonged use (over 1 hour), especially with a high flow rate like mine. But in my case, that’s not necessary at all since my prescription is only for 30 minutes per session.

In France, the equipment I use is easier to maintain and poses no contamination risk from a humidifier, since the entire system is more modern. And luckily, I already had some sterile water to fill the reservoir!

Another downside: the flow rate is limited to 9 L/min, whereas my prescription is 12 L/min. And with each use, the flow becomes less and less accurate (as I’m writing this, it doesn’t even go above 3 L/min anymore…).

So to get the same effect, I have to do much longer sessions than the usual 30 minutes…

But at least it did relieve the migraine, even though it hadn’t completely gone away. It was still fragile, and the slightest effort could bring it back in a really unbearable way.

In the end, the crisis completely disappeared after two and a half days!

It’s crazy how much of a difference I feel in my symptoms when I’m able to do my oxygen sessions versus when I don’t have access to them.

Even though the flow rate was too low, it still had some effect. But once again, these tanks are much less convenient.

[onlytiktoks]

What does “pinch” mean to you? #fyp #foryoupage #blacktiktok #fypシ #fyppppppppppppppppppppppp

What does “pinch” mean to you? #fyp #foryoupage #blacktiktok #fypシ #fyppppppppppppppppppppppp

[healthcaremarketingstrategy]

What Hospitals Can Learn from Swiggy & Zomato

Swiggy and Zomato have mastered convenience, speed, transparency, and user experience. Your blog explains how hospitals can adopt the same approach. Patients now expect real-time updates, clear communication, shorter waiting times, and smooth service journeys.

Just like these platforms streamline ordering and delivery, hospitals can streamline appointments, coordination, and patient flow. The blog highlights how digital systems, faster responses, and a customer-first mindset can transform hospital operations and improve satisfaction.

Your message is clear: by learning from Swiggy and Zomato, hospitals can deliver care that is more efficient, organised, and truly patient-centric.

Full Blog :- What Every Hospital Should Learn From Swiggy & Zomato

HMS Consultants

[surlycakes]

A Love Letter to "Lifestyle Changes"

Dear Well-Meaning Medical Professional, Thank you for suggesting I make “lifestyle changes” to manage my migraines, neuropathy, menopause, PCOS, allergies, and the general carnival of random symptoms that is my body. What a brilliantly original idea! I never thought of that. Here I’ve been, actively choosing to feel like garbage. Silly me! My current lifestyle isn’t a choice, it’s survival…

A Love Letter to "Lifestyle Changes"

[fromuctorx]

Get to Know Me: Living with UC and Aspiring to Become a Pharmacist!

Hi to whoever is reading! My name is Kayden, I am 17 years old, and I’m here to share my journey with UC (Ulcerative Colitis) and my dream of becoming a pharmacist.

I was diagnosed with UC about 2 ½ years ago, after doing the One Chip Challenge with two of my friends. If you don't know, UC is an inflammatory bowel disease that affects the colon and causes chronic pain, fatigue, and unexpected flare-ups. After my diagnosis, it felt like my world had been flipped upside down–my plans, my routine, everything changed. But over time, I’ve learned that living with UC doesn’t mean giving up on my dreams. In fact, it’s made me even more determined to pursue a career in pharmacy.

A lot of people ask me the question “Why Pharmacy?” and probably expect an answer about the wonderful pay it has or the other benefits, but to me those reasons are on the bottom of my list. For one, my aunt and mom both worked in pharmacies, so it kinda is a family tradition I want to keep alive. Secondly, I’ve always had a deep interest in science and medicine. But having UC has given me a unique perspective. I’ve been on the receiving end of medical care since I was a baby, from being in the NICU 4 months as a baby to getting infusions every 6 weeks, and these experiences has made me realize how important it is to have compassionate, knowledgeable doctors who can not only understand the science behind medications but also understand the patients who rely on them. I want to be someone who can bridge that gap–someone who is empathic and skilled in helping others manage their health.

In this blog, I’ll be sharing my experiences living with UC, my struggles, triumphs, and the day-to-day challenges that come with balancing a chronic illness and pursuing a demanding career path. I’ll also talk about the science behind pharmacy, the insights I gain along the way, and how my condition shapes my approach to studying and working in the healthcare field.

I hope to inspire others who may be facing similar health challenges to keep pushing forward, no matter how hard it gets. Whether you’re battling a chronic illness, pursuing an ambitious career, or just trying to figure things out, remember: resilience is key. Your journey might look different, but that doesn't make it any less valuable.

I’m so excited to take this journey with you and connect with others who share similar experiences. Let’s learn, grow, and thrive together!

Thanks for reading! I really haven’t figured out a schedule for my posts yet, so please bear with me.

Kayden, The UC & Rx Explorer

From UC to Rx

Follow me on Blogger & Tumblr @FromUCtoRx

[oceanstone]

Kate Bowler, Everything Happens for a Reason: And Other Lies I’ve Loved

[nevertellmetheodds2017]

Have we not been training for this?

Yes. Yes, we have. We have been training for this moment. We have been preparing. 

(each all caps is a link to a previous post - click through if you missed them)

THE ONLY EASY DAY WAS YESTERDAY We knew harder days were coming. It’s how this works. Every day a treatment works means a day closer to when the treatment stops working. Today is gonna be tough and tomorrow tougher still. That’s the hand we were dealt.  I got 21 months on that line of treatment (with some whackamole radiation added on top). Each month was pretty much borrowed time. No surprises here.

GET COMFORTABLE BEING UNCOMFORTABLE Change, upheaval, uncertainty, new side effects - it’s all sand in our undies. Expect it. Oh sure some would say embrace it, but I think it’s enough to just accept it, to say yup, that’s how it is. Screw embracing it, just nod and move past it. 

DON’T RUN TO YOUR DEATH No need to put things in fast forward. They’re ticking along at their own pace. Don’t make stupid mistakes, keep your head, remember your strategy and your tactics. Whining is fine but at some point it’s a waste of time and energy. As is wallowing. Put a limit on the wallow.. I wallowed a fair bit between Wed and Friday (including during my Zoom metastatic support group meeting). Now the time for wallowing is over. (your wallowing time might be shorter or longer - you get to decide that. Just be sure it doesn’t become an indefinite thing....) 

HAVE A SHARED SENSE OF PURPOSE For me it is: keep kicking this can down the road. The length of time I spent on first line of treatment of Tecentriq/atezolizumab + taxane has meant that a whole brand new drug reported out trials and actually got through Canada’s very slow tortoise-like approval process. I’ve told my oncologist I’m interested in aggressive treatment and clinical trials.  I am a bit sad that my regular oncologist is away. I like her locum but we simply do not have the history and there’s so much trust required in this relationship. And for all that we all walk around touting evidence based medicine, so much of this comes down to judgement calls. Do you wait for another scan, make a call now? Push for a trial, use standard of care, try to go out of the box? I believe she and I are on the same page but to an extent it’s something I won’t know for sure until a bit more time passes...

 Alas, we’ve possibly hit a small snag - on Friday I had a follow up phone call with the oncologist who was feeling less confident that Trodelvy would be quickly approved for me. There’s an issue with that one biopsy last year which showed faint estrogen positivity. Everyone still considers me triple negative (& for that matter, this drug is actually in trials for ER+ pts & showing some good results too so it’s not as if that means it wouldn’t work for me, even if all my tumors are faintly ER+. That said, the current Health Canada indication is only for triple neg metastatic breast cancer) but that biopsy might complicate approval. Funding is apparently also more complicated than she anticipated. She filled out a bunch of forms on Friday & now we wait and see. 

If it all goes sideways, we have some options. 

-appeal the decision.. We have an oncotype test from 2018 which categorized me as triple negative which we could submit.. We could do a repeat biopsy and hope for a clearer triple negative result. 

-this drug is also available in the US and I know at least one Canadian woman who accessed it in Bellingham. 

-move to another chemo and worry about sorting out this one as a 3rd line. 

We make the plans, make the notes and flowcharts 

& then we let go of what we can’t control.

& get back to reading good books 

Book recommendation today is Lori Foster’s A Perfect Storm

[lifesapolyp]

Thanks @rarepatientvoice for my zebra plushie and all you do to help patients share their voices!!
https://www.instagram.com/p/CXM3jKZPhyP/?utm_medium=tumblr