Im pretty sure im on my way out 🙁

[EachandEveryone]

Ive been in hospital for nine weeks rushed in with massive infection. Every time the try to reduce the antibiotics or change them to oral I spike temperatures and they have to restart. I obviously have an untouchable infection,

I have squamous cell cancer with unknown origin. Its been three years two years of chemo kept it in place but now its growing in my lymph nodes. Surgery not possible as i would bleed too much. Immunotherapy was supposed tonsave me but Ive never really had. chance to give it a go due to my bad luck,, vascular surgery, then taking my shin skin off then colitus! Infeel cursed!

my consultant is willing to try immuno again but he honestly doesnt think my temp will stay down long enough.

the other option is home on profilactic antibiotics and a care package. I feel like this is the only option really. I miss my cats. I feel so well in myself its so unfair. What started off the size of a peanut is going to kill me and god knows when that will be. Judging by the whispering and my consultant telling me to start smoking again it must be soon.

I feel sick!

I am so sorry you are so unwell. If your consultant genuinely thinks this is the end of your journey, then is it vital to give you IV antibiotics? Can you ask for oral treatment so that you can go home and be nursed by the hospice at home team? My heart goes out to you at this frightening time. And, if you fancy a ciggie, then why not? Or a large G&T come to that!

Sending you much love and hugs across the internet and hope you get home soon to be with your cat nurses. And when you do, we will, of course, expect photos of said cats.

It is good that you feel well in yourself. Hold on to that, and to all the positive things around you. Sunshine, cats, cups of tea, smoking. Hope you make it home to comfort and continue to feel well.

Can the DN's do IV treatment at home? My small person frequently has the community nurses do his IV antibiotics at home, it reduces his risk of infection, makes him far happier and frees up a hospital bed.

Wishing you every good wish going.

What a lovely, thoughtful post.
Sending you OP, and you Harmonious, my very best wishes 💐

There maybe an OPAT team that can manage your IV at home

Please update friends and family. They will want to know. Who’s looking after the cats? Hope they’re sending you lots of pics!!

@EachandEveryone , would you like to share with us about your cats? If you have any photos of them on your phone, or just want to tell us about them, I would love to hear it. Is there anything specific you’re concerned about? (It’s ok to say “everything.” Very gentle hug for you).

And please try not to worry yourself (what a ridiculous thing for me to say to you, huh???? 😂 ANYONE would feel worried if they were you, but please know, you’re not alone). If you start to feel incredibly anxious about all of this, PLEASE tell your consultant. What you’re going through can be so difficult and can feel really lonely (when the doctors thought I was going to die, and I was incredibly unwell, nights were always the hardest), and the doctors don’t want you to feel scared or overwhelmed. They should be able to give you something that helps a bit but doesn’t make you feel loopy.

Can I ask, after nine weeks, I’m sure they’ve grown all kinds of cultures of your infection, and know whether it’s gram-positive or gram-negative and all that, so is it just that they’ve tailored treatment to the infection and it’s still not working? Unfortunately yes, there are more and more infections that are antibiotic-resistant and I worry the public isn’t seeing it, because I think a lot of the “super infections” are picked up in hospital or during medical care for another issue. I’m so sorry if this is what’s happened to you, OP.

Please don’t give up on the idea of going home with IV antibiotics if you have to. I hope they can sort out something to get you back home to your moggies. When I was in hospital, there was nothing I wanted more than to go home. Can I ask who is caring for them right now, and do you have a plan for them long-term? Mumsnet may not be able to help you healthwise, but could definitely help with that.

Echoing @Theseventhmagpie's post. My very best wishes to you both.

Wishing you all the very best. So sorry you have to go through this. It's not fair. X

Go home and give your cats some love. I know that what I would want to do. My own bed, my cats and whatever food and drink I fancied.

I know you are a nurse @EachandEveryone, could one of your nurse friends / colleagues help you advocate for IVs at home? My dad had daily IV antibiotics at home recently because we wanted to keep him out of hospital. I am a midwife, and I would give my life for the NHS, but sometimes he who shouts loudest gets heard. When you are ill its very hard to keep fighting your corner, would a friend push for you to have this care at home? I hope so much that this happens for you.

Wishing you every possible moment of joy in whatever time is allowed to you. I'm so sorry.

Fellow cancer patient here. Lymphoma for me. I’m sorry I don’t know much about squamous cell. I’d say ask about clinical trials/CAR-T cell therapies or bispecific treatments but I’m not sure how viable any of those are if you are battling infection.
Do you have someone with you when speaking to the Dr’s? Its so hard to take it all in when younare dealing with so much already.
I mostly wanted to give you a hug tbh. Cancer is just the loneliest journey, no matter how much support you have. Please know that you are being thought of and hoped for (not religious, so thats my prayer alternative). Sending love.

I'm so sorry, life can be do cruel and unfair

Oh @EachandEveryonethat is so fucking shit, from a cancer thread alumni.

Is there anyway you can go home for a day or even overnight? It's very hard to think clearly from a hospital bed when all you want is a break. We did that with DH in similar but different circumstances.

It sounds really tough - I hope you can get some time at home soon.

Sending you love and strength x

Cats have the reputation of being selfish arseholes but I've always found them immensely comforting and soothing company. I hope you can get home and spend some lovely time with your furry companions - they will be very glad to see you. Wishing you peace and love 💐

That sounds utterly unfair and shit OP. I'm so sorry. Sending much love and strength.

I’m so sorry to read this. I really hope they find the right antibiotic for you, and that you get a chance at the immunotherapy.

Do whatever pleases you. Have treats, be with your cats and whoever brings you joy.

Sending you much love, hugs and hope ❤️

Oh OP I’m sorry you are going through this. My friend is a year into a similar diagnosis, cancer of the unknown primary and secondary squamous cell cancer in her lymph nodes. I really hope you get home soon and sending you love.

Sending love and hope. Life doesn’t make sense sometimes and none of us knows what lies ahead. Thinking of you. Go and cuddle those cats xx

Nine weeks is a long time to be in hospital. What’s it been like? I imagine you have seen the best and worst of the NHS and could write a book…

What are they doing for her? Mines all in my groin and has started to come through my skin, i have a colostomy bag and drain on it which is working but I know they were useless managing it in the community and I silently blame them for letting it get infectected in the first place. I told them time and time it smelt off and they just ignored me. I couldve died tgen if I didnt ring an ambulance myself.

i cant have iv at home its too many shots. Besides if im on iv i cant have therapy. If im on oral hes willing to try but its a long shot.