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Im pretty sure im on my way out 🙁

247 replies

EachandEveryone · 27/03/2026 14:49

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!

OP posts:
becks571 · 12/05/2026 15:26

I have been looking after a lady with very similar symptoms to you @EachandEveryone With good wound care, her fungating tumour seems to have settled down and she is able to go home today.

Is it wound exudate or tumour secretions that is draining? Have they tried octreotide to try and dry it up?
I hope you get a break soon, everything sounds so tough for you at the minute.

MissMoneyFairy · 12/05/2026 15:55

Nursemumma92 · 12/05/2026 11:54

There are often acute care at home teams or OPAT teams that will do long term IV antibiotics at home. The trust I trained at had OPAT nurses that would where possible, teach the patient to give their own IV antibiotics if they had long term venous access. It might be worth exploring this possibility?

That's a good point, would you be happy and able to have a longline and administer your own ivabs.

MissMoneyFairy · 12/05/2026 20:05

There are several, trusts in London that have the opat service

Interested in this thread?

Then you might like threads about this subject:

EachandEveryone · 13/05/2026 14:44

Going end of week on oral antibiotics

OP posts:
MissMoneyFairy · 13/05/2026 14:47

Going home, are you having the nurses in to help with your dressings. Your cats will be so happy to see you.

Specialneedsnightmare · 13/05/2026 14:48

Good luck @EachandEveryone it's a shitty situation for you but really hope you see some improvement and can re start immunotherapy.

EachandEveryone · 13/05/2026 14:55

I can restart it but will always be on antibiotics.

it will be the same care package as before.

OP posts:
MissMoneyFairy · 13/05/2026 15:10

I hope the district nurses are kinder to you than they were before and that you are able to stay out of hospital, wishing you all the very best.

Specialneedsnightmare · 13/05/2026 15:17

Hopefully ongoing antibiotics will keep the infection in check enough so that the immunotherapy helps control or shrink the tumour.

Sorry you're going through all this. I do hope you see some improvement in the end.

dontcallmelen · 13/05/2026 16:06

Another wishing you all the best @EachandEveryone really hope you get the care & support x

Dewdust · 13/05/2026 16:14

Dont underestimate how well you are coping.
And you will get better with persistence I think!

EachandEveryone · 13/05/2026 19:07

The oral are making me nauseous. I asked about being moved up north he said it would be too complicated I would have to get all my notes going back to when this first started and I would have to wait until I get admitted to hospital for them to see. He said the cancer is clearer.

OP posts:
MissMoneyFairy · 13/05/2026 19:21

What tablets are they, did they prescribe anti emetics for you. Can they consolidate your history and refer you to the appropriate team up north, were you ever seen there or registered with a GP.

KnickerlessParsons · 13/05/2026 19:23

Are you taking the ABs with food? That can help avoid nausea

Dewdust · 14/05/2026 16:59

What does it mean...the cancer is clearer?

EachandEveryone · 14/05/2026 17:07

I can’t get discharged one if my blood levels has gone up

OP posts:
scorpiogirly · 14/05/2026 17:33

EachandEveryone · 03/05/2026 12:22

Well I wouldn’t want to lose my legs if that’s what you mean radiologist said the same as the vascular surgeon there will be too much blood loss. I asked about a second opinion but they said my man is an expert there’s no point. I was crying and told them I’d try anything. They took me off ab last night and straight away my temp shot up.

I really think you need to push for a second opinion. Can you possibly research other experts in this and at least contact them to explain?

MissMoneyFairy · 14/05/2026 18:21

EachandEveryone · 14/05/2026 17:07

I can’t get discharged one if my blood levels has gone up

Which blood levels, what's their latest plan for your care and discharge planning.

EachandEveryone · 15/05/2026 01:17

I hate notes on the computer in the old days Id have all these to hand. I’ll ask tomorrow but he said it’s a marker about my response to one anti biotic

OP posts:
MissMoneyFairy · 15/05/2026 09:02

I hope younget the answers soon so you can go home, can they print out results for you.

Owlmoonstar · 15/05/2026 09:22

EachandEveryone · 15/05/2026 01:17

I hate notes on the computer in the old days Id have all these to hand. I’ll ask tomorrow but he said it’s a marker about my response to one anti biotic

Why don't you request a paper copy of your medical notes?

You have every right to have them. They will probably tell you to put in a SAR through the GP, perhaps. But it would be good for you to have them all in front of you to make sense of things.

Dewdust · 15/05/2026 12:59

Youre not really missing a lot at the moment. Theres a big march in London on the Saturday but its not something youd want to be at anyway. The Emirates F.A. Cup final is on Saturday at Wembley starting at 3 pm but you can see it live on T.V.
( Man City v Chelsea)!
The weather has been lousy with hail, rain and thunder and today is just another grey day so you might as well make the most of where you are for now . If you get the all clear by the May Bank Holiday you might have more to look forward to!😀

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