So sorry about the tough time that you are both having! Really glad you are both being taken care of and hope you will both be back home very soon and feeling more spritely if you aren’t already. 
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Hooo @Jilly I am so sorry to hear! I am still in hospital on my side too. They still don’t know where the problem is coming from, everything is coming back negative in terms of tests but my inflammatory markers are still too high for me to go home.
Be kind with yourself Tilly and remember, this is temporary (even if frustrating!!) and baby steps…
Xx
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Thanks, my team are managing me as an outpatient so I attend each day for iv antibiotics and 
with bloods every other day. So will see what results are tomorrow.
If they are worse I’ll have to be admitted.
Hopefully you’ll get out soon.y last admission didn’t really find anything just eventually they settled. Hugs
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Oh @Mmepages I am so sorry to hear that you are still in hospital.
I do hope your tests come up with a reason soon.
Yes, it must be frustrating for you, be kind to yourself and we are here for you
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Oh @Jilly I would find attending as an outpatient every day absolutely exhausting so really be kind to yourself and try and keep your life as simple as possible
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Didn’t work, felt worse so re admission again today. Actually ok about going in as I feel ill. Hopefully not for too long.
How you feeling @Mmepages
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Oh @Jilly so sorry you feel worse and you feel ill.
Really look after yourself and yes, hopefully you will not be in for too long.
Please do keep us posted, but only when you feel up to it.
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Hi both,
Sorry to hear you had to be re-admitted but at least you are in a safe place and they will look after you!
Worst day today, with above 39 temperature for most of it and a lot of shivering / sweat / cold and headache!
I actually asked to see the doctor today to complain about the care received so far (30hrs in A&E, put in a generic ward with people with dementia trying to enter the room, staff not at all used to neutropenic patients so I had to remind them all the time to wear gloves / masks , forgot the take my obs and giving my antibiotics last night …). I was also the one explaining how to use the Hickman line - don’t get me wrong they are adorable but just not trained for our type of needs and it made me feeling really anxious.
Thank god the doctor who came was really understandable and check if there was a bed available in my old ward and there was so I am back in the transplant ward with the nurses I know and I know how strict they are so I will feel better and safer here.
I am pretty sure I will stay here for at least 2-3 more nights but so far we still don’t know where the infection is coming from and my markers are still high (50-70).
I ll keep you posted, fingers crossed tomorrow will be better.
Jilly please keep us posted too and good luck, I know it is not easy and disappointing but let’s remember it is frequent in our case and not at all a step back (dixit the doctor here)
Xxx
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Sending hugs, sounds like you’re going through it. So glad you in a haem ward now. I was lucky to be admitted from daycare to the ward. Last time I was in 2 weeks so prepared for that. My CRP still 139 and I have little septic showers where my temp spikes and I get rigors then it comes down with paracetamol and I feel better. I’ve slept a lot today.
Had all my cultures etc redone so hopefully get some improvement next week or a change in therapy.
Take care all hope the rest are doing ok and keeping well
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Hi @Jilly,
How are you doing ? Coping ok? Did they find what triggers your temperature? Thinking about you a lot!
I had the same showers than you but didn’t get one yesterday so I take it as a win! I think 2 weeks is probably accurate from my understanding.
We finally did some improvement on my diagnosis as the new culture (done well by the heamatology nurse) came back positive with a bacteria so they are adjusting treatment. I googled it and apparently it is one you catch in hospital so a little bit gutted but anyway…
They need to remove my line this afternoon, I am really not keen on this but it is infected so no choice!
After that they’d like for me to do a colonoscopy which I am not keen on either but they want to exclude Graft-versus-host-disease too as I have diarrhoea for a few days now.
In summary, this is going to be a fun weeks of things I would have preferred to avoid!
I hope I will respond well to the antibiotics 
and hopefully be home by the end of the week as we are supposed to move home beginning of October and was planning to sort out my clothes a little bit.
By the way @Erica do you know if blood cancer uk has shops where my mum could drop clothes for charity ?
Thank you & have a nice day everyone
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Hi @Mmepages a good question I will copy it to the Blood Cancer UK support services for you @BloodCancerUK-SupportTeam
Thanks to your mum for thinking of Blood Cancer UK, take lots of care
Hi @Mmepages
Thank you for your question about shops for a donation. I’m updating this post as I’ve just found out that we do have one shop that accepts donations in Lutterworth Blood Cancer UK Charity Shop, Lutterworth District Charity (lutterworthcharityshops.co.uk) Not sure if your Mum is anywhere near there but they may accept donations by post 
Other ways to support the charity or get involved are here in case of interest: Get involved with Blood Cancer UK | Blood Cancer UK
Hope all went ok with your line removal and colonoscopy and that you make it home OK. Take good care of yourself.
Thanks again,
Ali
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Thanks for sharing the info.
Unfortunately we are not around that area so I might go more generic and give to cancer research uk where they have store close by
Regarding myself, I am finally back home after a 2-week stay in hospital with sepsis so quite tired and I lost a lot of weight as I barely ate anything during my time there. Feel like I need to start from scratch again as I feel weaker now than when I left after the transplant… baby steps!
My mental health also took a hit due to my blood count going all over the place during the infection despite the doctors telling me it is normal. They still decided to do my BM biopsy slightly earlier than planned so it will happen on 1st October instead of 22nd. Fingers crossed!
@Jilly how are you doing ? Are you still in hospital ? Sending you big hugs!
Xx
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Hi @Mmepages
So sorry to hear about your last two weeks. Definitely baby steps and take good care of yourself. Hope you find something you want to eat now and build back your energy. As always, we’re here if you need us: Blood cancer information and support by phone and email | Blood Cancer UK
Also - sounds like a good idea r.e. the shop - go for convenience I thought it was a longshot about Lutterworth!
Rest up and sending our best wishes.
Ali
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Hi all,
@Mmepages glad your home. Sepsis really takes a hit and the mood plus appetite is to be expected. Take time it will come back.
I’m still in hospital, got a post transplant viral complication so needing more chemotherapy. Had 2 rounds so far but forgot how much this wipes me out.
The team have been really good after I raised concerns about being in for my last infection admission so cannot fault them.
I have a shiny new picc line finally , my poor arms are black and blue. The fevers took 10 days to break but finally have so I’m turning a corner.
I have zero muscle mass now but will worry about that when i get home. Baby steps.
@Caroline30 @Gerard hope all going well with you both
Take care all
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Hi @Jilly,
Thanks for your kind words and I am glad to hear from you. Sorry you are still in hospital with this viral infection following transplant. Do you have an idea of when you’ll be likely to go home now that the fever is gone? I hope you’re coping ok and I am glad you have a new line as there is so much our arms can take!
I am sending you lots of hugs and good energy for the coming days! Xx
Thinking of you too @Caroline30 @Gerard @Erica and @Toadmum i hope the hubby is still going strong too!
Xx
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Hello, home back to outpatient treatment let’s hope I stay out for longer this time.
Hope everyone is ok
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Hi @Jilly Really look after and be kind to yourself.
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So glad to hear you’re back home and hopefully feeling better!
Take time to rest and reset, baby steps…
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I have been thinking of you. Hope you are doing OK at home and doing plenty of resting
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