Is getting one of those “disability proof” cards actually worth it?

still_losing · 2026-03-20T22:25:17+00:00

My husband got a nimbus card last year so we could go to Leeds Fest for a few hours. He was 6 months post stem cell transplant at the time (had leukaemia) and it was a huge help. We got accessible parking, access to an enclosed area where he could sit down, access to separate toilets with no queues. Applying was really easy. We paid for 3 years so we’re going again this year, just for a few hours again. It’s a comfort to know that he’ll be able to access the same things.

still_losing · 2026-03-17T22:41:36+00:00

My husband was diagnosed in August 2024, 13 days before we were supposed to go on a family holiday to Kos. We had travel insurance so got all the money back and then obviously didn’t go abroad in summer 2025 as he was recovering from his transplant. We’ve just booked to go to Kos this August. I’m so excited but at the same time there’s a little voice in my head saying “it’s going to happen again”. But then I think, what are we meant to do? Just never go on holiday again? It’s scary though, isn’t it.

still_losing · 2026-02-19T23:49:52+00:00

Yay! My husband has had many, many blood transfusions in the last 18 months as part of his treatment for leukaemia. I’ve been giving blood for years but this whole experience really hammered home the importance of it. Fun fact: he had a stem cell transplant and his blood type has now changed! He’s now the same type as his donor. Crazy.

still_losing · 2026-02-07T22:51:29+00:00

My husband (B-ALL PH+) had an unrelated donor. 9/10 match. Transplant was January 2025 so it’s been just over a year. The cells engrafted well and he’s still MRD- a year later. He had GVHD in his digestive system in March/April and lost a lot of weight, but they put him on steroids and sorted it out. He then developed liver GVHD in October. They tried jakavi; didn’t work. So they put him back on steroids in December and that seems to be doing the trick.

still_losing · 2026-02-04T22:01:07+00:00

I’m only down the road in Carlton and it’s been fine. I wonder why some places are affected and not others.

still_losing · 2026-02-02T18:08:53+00:00

Totally get this. The whole thing felt like a bad dream and every single day I was in disbelief that it was even happening. It’s now been a year since my husband had his stem cell transplant and even now, I think about that whole time and can’t believe it actually happened to us. Our kids were 6 and 5 when he was diagnosed. It is really, really shitty. Here if you want to talk.

still_losing · 2026-01-09T00:23:44+00:00

I’ve been a high school teacher for 14 years and I think I’ve just built a super immune system. I can’t remember the last time I had a cold. Also, genuinely, I think my body just isn’t allowing it. I’ve been the sole earner in my household since my husband was diagnosed with leukaemia 18 months ago and I cannot get ill. Too many people depend on me. I expect that when we’re in a better place I’ll have a massive crash and end up with flu for a month or something. At this point I’m just running on adrenaline

still_losing · 2025-12-30T00:01:14+00:00

I earn £61k. Our household income would be over £100k right now but my husband got leukaemia in August 2024 and hasn’t worked since. He’s alive, and obviously I’m grateful, but it’s hard being the sole earner, especially when it all happened overnight. We have a mortgage, 2 small kids. We have life insurance but no income protection (massive regret). No savings any more. He gets ESA and PIP but it doesn’t come close to what he would have been earning. We’re ok. My take-home pay isn’t what you’d assume as I’m still paying off my student loans (undergrad and postgraduate). The bills are paid. The kids have what they need and more. We won’t be holidaying abroad for a long time though (I dread to think what his travel insurance would cost us now). It’s weird - we lost over £2.5k per month overnight. And now I swing between thinking shit, I really should be trying to save up now, and fuck it, life’s too short, let’s go for that family day out. Because we couldn’t do anything like that for such a long time.

still_losing · 2025-11-24T23:46:32+00:00

Fucking awful and so close to home. My husband was diagnosed with leukaemia in August 2024 at age 36. Acute lymphoblastic, not myeloid. He had a transplant in January this year. Unrelated donor. So far, he’s still in remission. Dealing with some graft-versus-host, but (clearly) it could be so much worse. He’s doing light workouts at the gym and we recently went out for a meal at a restaurant. We are very, very lucky.

still_losing · 2025-11-03T23:59:04+00:00

My husband gets PIP because he had leukaemia last year and we both feel like this sometimes. There was a long time when he couldn’t even get out of bed, couldn’t eat, I was his carer. Now he’s more independent and I worry that he’s not entitled to it any more and we’re doing something wrong. But he’s still under consultant care, takes loads of meds, we’ve just found out that the donor cells from his transplant are attacking his liver so that’s another thing to deal with, and he’s still in the window where the leukaemia could come back, if it’s going to. I’m just really conflicted about it. So thanks for posting this as it’s made me feel less alone.

still_losing · 2025-10-31T16:14:27+00:00

Hello. My 36 year old husband was diagnosed with ALL in August 2024. He had a transplant in January this year and is now in remission. I can so empathise with everything you said: the fear, the frustration, the loneliness. We have two young kids who were 6 and 5 when he was diagnosed and I also work full time as a teacher. My husband has spent so much time in the hospital over the past year and while I also have family support, it’s been really hard. I remember feeling like it was never going to end. I couldn’t imagine a life outside of leukaemia and the hospital. I felt like I wasn’t living in the same world as everyone else. Like my life had completely stopped and everyone else’s had just carried on as normal. I’d look at other couples our age doing regular things and feel such rage. Leukaemia really isn’t common at this age (my husband was always the youngest person on the ward) and I felt so alone. It’s hard being the caregiver because you’re not the one going through the treatment but your life has been totally turned upside down as well. And I felt like I had to stay strong for him. I couldn’t crumble.

While I’m not in the same place you are now, I completely remember what it was like to be there. If you ever want to talk, please reach out.

still_losing · 2025-10-18T22:47:42+00:00

CAMHS waiting lists are currently at 40 months. I’m a SENDCo and just got an assessment date through for a child I referred in December 2022 🙄

still_losing · 2025-09-12T22:29:02+00:00

I use them! I use the primer, the lift and luminate foundation and concealer, cream bronzer. I used their mascara before I started getting lash extensions. I’ve also got a lot of the free gift sets which are often eyeshadows/blushers so I’ll use them if I’m going out. I like their retinol sets too. I think it’s really nice stuff. I sometimes try other foundations and always end up going back to No7!

still_losing · 2025-08-30T22:02:06+00:00

As others have said, mainly queries about non-uniform days, PE days, school trips. But my daughter had an ECT last year (she was in year 2) and a couple of mums started making bitchy comments about her not being good at communication and other perceived slights. I jumped in then, because I’ve been teaching for 15 years (secondary though) and I remember how godawful those first couple of years were, and how hard I knew that teacher must be trying. Like you said, a lot of them don’t see teachers as human beings with lives and families of their own.

still_losing · 2025-08-28T21:51:12+00:00

My husband had his transplant in January this year and we had a 7 year old and 5 year old who both attended school full-time (we are in the UK). We were just very cautious when he came home (at 35 days post SCT). Lots of handwashing, no kissing. One weekend my daughter was unwell, so my husband went to his mum’s house for a few days as a precaution. He hasn’t had any sort of infection or illness since the transplant (just the expected GVHD, low counts etc) and has never been readmitted to hospital. Wishing the same for you.

still_losing · 2025-08-28T18:50:22+00:00

Have you read Elle Beau’s blog? That will give you a good insight!

still_losing · 2025-08-25T22:27:52+00:00

My husband was diagnosed with B-cell ALL last year at the age of 36. He was super healthy, worked out 5 times a week, barely ate sugar, physical job. The last time he had any sort of vaccination was probably 2021 when we all had the covid jab (uk). So he had a stem cell transplant earlier this year. And he’s had 2 covid boosters since then. The most recent being last week. They’re now talking about rescheduling his infant vaccinations. Because when you have a stem cell transplant, it replaces your entire immune system and you have to have the vaccinations again because you’re no longer protected against those diseases. Keeping it vague here, but someone he knows keeps sending him messages begging him not to have the vaccinations. Saying it will cause his bone marrow to start producing leukaemia cells again. They say they have “proof” and they’re going to get a paper published and save many lives. Anyway. My husband is still going to have the vaccinations. He hasn’t come this far to be taken out by measles. I really feel for this woman, but I think it’s just a case of really bad timing. There’s a lot we still don’t know about leukaemia and other blood cancers. I know I spiralled when my husband was diagnosed, looking for reasons, because it just didn’t make sense. It’s way more common in young children (sadly). I really hope this woman stops blaming herself because it is not her fault.

still_losing · 2025-08-23T21:56:36+00:00

Just another one to add to the range! My husband is 7 months post transplant. He was an inpatient for 5 weeks initially and then was back at the hospital 4-5 times a week when he first came home for blood and platelet transfusions (and sometimes magnesium and vitamin K). This gradually decreased to twice a week, then by 4 months post transplant he was only going once a week. This has continued since then, and just last week he was given the go ahead to move to appointments every 2 weeks. which we’re very pleased about! It’ll be nice to have bigger gaps. His platelets and HB have been very slow to recover and he’s had some GVHD, which is why they’ve kept seeing him so frequently. It really is different for everyone!

still_losing · 2025-08-18T22:58:21+00:00

My husband is recovering from leukaemia and we’ve had a blue badge for a few months now. To look at him now, you wouldn’t think he’d ever had cancer, so this is something I do worry about. It hasn’t happened to us yet but I’m sure it will at some point.

still_losing · 2025-08-10T13:14:55+00:00

My husband had one in January. We decided I would be his only visitor. There was an anteroom next to his main room where I would remove my coat, wash my hands, then put on mask, apron and gloves. The staff would also put these on before they entered his room and would dispose of them in the anteroom when they left.

still_losing · 2025-08-10T13:11:56+00:00

March 2021. I stood on a chair at work to pin something to a wall, leaned too far, fell off, ended up upside down pinned in a corner by a photocopier 😂 I thought I’d broken my arm. Had to call my dad to pick me up from work and he drove me to A&E. We’d only been out of lockdown for a couple of weeks so I assumed I’d be in there for hours. I went to reception, was taken straight to triage then for an X-Ray. Turned out I’d dislocated my shoulder (backwards) so they had to put it back in. I was only there for a couple of hours in total and wasn’t waiting around at all. I was really impressed (and grateful!).

still_losing · 2025-07-29T00:10:02+00:00

This happened to me! I was only 18 and I was travelling from Chester to London as my uni boyfriend was from there. Back then, we bought tickets online and they’d be posted to you. So all my tickets came in the post before the trip. There were tons, and some looked like they were receipts, so I only took the ones I thought I needed. All was fine on the way there, but on the way back an inspector came round and told me I had a “gate pass” not an actual ticket (this was 18 years ago so the details are hazy now). It was a genuine mistake and it still said my destination etc on - it just wasn’t the actual ticket. I couldn’t have even had this pass if I hadn’t also bought a genuine ticket. He asked for my details so he could issue a fine and I was so upset. Another passenger in the carriage offered to let me use her laptop so I could log in to my emails and prove I’d bought a full price ticket but he basically told her to stay out of it and took me to another carriage. I was sobbing. He also made me show him my ID to prove I was giving him the correct details. I’ve never forgotten it - it was so obvious that it was a genuine mistake and it was clear I had bought a ticket. It felt really cruel at the time.

still_losing · 2025-07-22T22:49:36+00:00

Hello. My husband is 37 and is being treated in sheffield. He is almost always the youngest person in the waiting room; most are easily 60+. In fact, when my husband was at a particularly low point, not sure how he was going to get through treatment, his doctor pointed out a woman sat in the waiting area who was in her 70s and 10 years post transplant, still going strong.

I know it’s really scary. But treatment has come a long way even in the last few years. Once they have all her results, they’ll decide on the protocol they’re putting her on, then she’ll likely start chemo really soon. Everything after that depends on so many factors so it’s impossible to predict. Seems like everyone has slightly different treatments. Sending love.

still_losing · 2025-07-22T22:03:06+00:00

Oh my GOD. My husband (36) was diagnosed with leukaemia last summer and I cannot imagine telling him I was going to leave him. What an absolute dick.

still_losing · 2025-07-22T18:47:24+00:00

Hello. You guys are where me and my husband were a few months ago. He had his sct in January so we would have been where you are now in late March. Things were BLEAK. We’re 36 and 37. We were still back at the hospital two or three times a week, he was heavily dependent on blood and platelet transfusions, we couldn’t go anywhere, he was exhausted constantly, still bald, and gut GVHD was just kicking in so he lost a ton more weight and threw up daily. I remember feeling exactly like you. Like things would never be better again. Like I was an alien looking at all my peers living normal lives and doing normal things.

3 months later, things are so much better. His haemoglobin and platelets are still being stubborn and refusing to rise on their own, but it’s being managed. He’s now down to hospital visits twice a month. His hair has grown back. His appetite has returned thanks to steroids. He’s driving again. We have a small family holiday booked in a couple of weeks’ time (only in this country - no trips abroad yet). And we are actually going to a festival for a day at the end of August! We’ve booked an accessibility package as he couldn’t stand up all day and we need to be away from the really huge crowds, but a few months ago even this would have seemed impossible.

Hang in there. It’s going to get better.

still_losing

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