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!

That sounds like progress? Glad you have some clarity at least (and that you got some sleep, maybe the magic ingredient!) All power to you to fight the infection and get onto the treatment.

Yes, its good news its a U.T.I infection because its curable but do they know why you keep getting reinfected?
Maybe, things will work out ok for you!

I have a hole in my groin which is covered by a colostomy bag and drain I keep getting infected through it. My consultant from work came yesterday and we had a long talk about whether it’s worth pursuing treatment even if my oncologist doesn’t think it will work or whether it’s better to live my life being comfortable with family. Is my oncologist just being nice last month he wanted me to stop but yesterday he was all for carrying on.

That must be upsetting, has your work consultant been talking to your oncologist? Why did he as you if its still worth pursuing, what does your oncologist think, is this treatable.

The indecision from those looking after you must be so frustrating. All you want is a rationale and a plan x.

Sorry to hear this. It sounds like you need someone on your side who can advocate for you and ensure you get the right advice and treatment. Sometimes, these doctors are so stretched they forget there is a real person in front of them with hopes and wishes too. You have all of us on your side but need someone to be physically with you too.

Well why does your colostomic bag keep getting infections when other peoples dont?
Maybe they could let you know that.
Perhaps your consultant thinks it is demoralising for you to be in and out of hospital so much especially as the world outside is getting towards summer.
It must be very difficult for you to know where you stand with all this . Its confusing. Its in the lymph but they cant operate .
Its stopped growing though and you feel fine in yourself.
Maybe your doctors think it would be nice for you to be surrounded by caring and cheerful people as one day in a hospital can be pretty much like another.
Maybe you could get out and do something pleasant!

Is it an internal drain which runs into the bag, if emptying and changing the bag is done as clean as possible it shouldn't keep getting infected but your lymph system and immunity is compromised which won't help. What antibiotics are they suggesting for home.

It’s because under the bag is a great big hole in my skin. It is the tumour and they say this is the reason why I’m more at risk of getting infections as it is warn, moist etc. it’s not an internal drain as the surgeons won’t touch it. Apparently there is puss behind it but they say it’s too dangerous to try and get it out. So far I’m on metronidazole ampikacin and Linezolid. Here is a photo of the set up.

The bag must be lower than your wound, the fluid will not drain properly if it's higher and hung over the cotside.

It is lower its draining alot

Every consultant has different ideas. Apparently I was supposed to have a bag of fluids last night to replace what is draining out from the wound. My hb is 80 and I suggested a blood transfusion which they agreed with then she said she is worried about me going home as I’m on such high dose antibiotics one has stopped today. She said all infection markers have gone down.

Do you have someone who could advocate for you? And maybe talk to PALS for help with organising a multi-functional team meeting with you both involved so you can all agree the way forward? You could ask for one (medical) hospital point of contact who will liaise with all the doctors and nurses on your behalf so they can help you understand the plan, and why it changes (if/when it does).

Well, I am definately not a nurse or a doctor and I dont fully understand your situation.
I wouldnt be happy having fluid drain from a pus filled hole but half the time we dont really know whats going on in our bodies.
I guess its an abscess. Ive had those inside the ear and they usually drain them with a long needle but antibiotics do a good job too.
Maybe you dont have a choice and the only thing you can do is go along with it all.
Did you say it all started with skin cancer?
Did it spread into your colon?
All this stuff is so complicated that people like me can only hope for the best for you.
Last thing you said was that you felt ok?

I had a transfusion over night my friend was will me all day and changed my dressings. She does advocate for me. My sister rang me and said it’s time I came home. I don’t like up North and I’m terrified the care won’t be as good. Selfishly I’ve booked some gigs down here and a festival in July. Once I get up there I’ll never get back down

I hope the transfusion makes you feel a bit better, are you in a hospital near where you live.

Where o live in London but not near my fanilyl

@EachandEveryone I presume that Tissue Viability are dealing with it all? I was thinking about this and I know that vac dressings aren't recommend for active cancer wounds, but I was wondering if they could combine something like a silver nitrate dressing with a vac dressing, so that the wound itself has an antimicrobial dressing to minimise infection, then the vac dressing draws away the exudate. I'm sure they would have thought of that if it was viable though.

In terms of your family and the full treatment/palliative decision, etc, I understand their sentiments but this is your life. You need to do what you can make peace with. What would leave you with least regret? Do that.

Its lovely of your sister to want to see you but this is your summer!
I think its great youve booked some festivals and you know the medical team where you are at.
Youre not alone because your close friend was there for you!
I understand the sister ( especially if she has kids ) but in a strange kind of way she is being selfish.
Because she wants you there before you want to travel!
And you are entitled to use your non hospital time as you see fit.
You dont need to uproot even if your family worries about you.
For now you just have to be in the place youre most comfortable !

But its a difficult decision for you. Except that summer can be so pleasant you might
as well enjoy it.
Would you feel trapped if you were back up north?
Or would you feel ready to collapse and allow them to be sweet to you?
Or would they expect you to do all the housework?
Or baby sitting?
Or are they thinking that they could give you good food and company?
You could maybe visit after your festivals if your health allows it.
Packing up and leaving is an enormous task!

Could your sister travel down to spend a weekend with you in London?

She does all the time.

so
the biopsy of the wound showed three different infections. The community won’t do three injections a day. I am just going to keep getting infections as the wound is open and at the groin. I feel like I’m drowning.

Is there an alternative to the antibiotics, can you have them orally. What has the microbiologist said.

We are waiting for them to get back but surely if orally was an option they’d have said

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?