So sorry to read you are having such a tough time @Unclejack
Keep going and I’m sure everyone on the forum is rooting for you
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@DuncanB @Sisi @Lyndam @Willow @Erica @ChrissyD @Sisi
Hi everyone, released last night from the hospital at 8 pm. Pain in right knee severe. Strangely monocytes had fallen considerably, (good) platelets now at their highest for many years (good). I return to hospital at 3 pm tomorrow. Have great difficulty walking and a cab is my only option. Getting in and out is very difficult. Really nice to be back home. Best wishes to all Unclejack.
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Hi @Unclejack
Very relieved to hear that -though sounds rotten that you’ve still got such pain in your knee. Presume tomorrow is an outpatient appointment? Hope they soon find and treat the problem as it’s been pretty miserable for you these past few weeks. 
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Hi @Unclejack Good to hear you are home again. I’m sure now you are home you will start to feel a lot better. Sorry you are in so much pain still. At least you can get some decent food now. Hope you are soon out of pain. Take care.
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Great to hear released from hospital last night @Unclejack
Hopefully pain in knee not too debilitating
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@Unclejack So pleased to hear you’re back home now! 
I really hope the pain eases soon for you. Very best wishes & take care 
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Glad to hear that you have been released @Unclejack, but I am very concerned that you are still in severe pain and as your post says you are not very mobile.
Please do let us know how your appointment goes.
Oh, I bet your own bed was very welcome.
Really be kind and look after yourself, you are very special xx
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@Duncan @Sisi @Erica @Willow @Lyndam Chrissy D.
Back in hospital. Pain super severe. Another aspiration yesterday. Depression dreadful. I have had one day outside hospital in 5 weeks. I genuinely believe I will be lucky to survive the situation. 5 weeks of antibiotics seem to have little effect. Woke up at 2 am this morning thought I was having a stroke, didn’t know were I was or why. Thought I was on holiday in Cornwall. Taking morphine quite a.lot. Ambulance crew gave me a different pain killer that was excellent. Unfortunately nobody seems to.know what I was given. Throughout the battle with Chronic myelomonocytic leukaemia ('CMML') I have never felt the psychological impact to this level. Without my wife I would not carry on 4 bus journeys every day she endures to visit me, and all I do is moan and complain.
Sorry for moaning we have all got our problems.hoping everyone is okay.best wishes Unclejack..
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Oh, no, @Unclejack that pain must have been absolutely super severe to land you back in hospital.
I am struck by what a gem of a wife you have, a complete star..
You are not moaning you are just saying it how it honestly is for you at the moment and that is what we are definitely here for because you are a very special forum buddy of ours.
The Blood Cancer UK support line is also there for you on 0808 2080 888.
Keep them posts coming, keep taking every painkiller you can, and lots of love xx
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Hi @Unclejack What a nightmare you are going through. Stay strong as you have a lot of forum buddies rooting for you on here. You have to keep fighting as Erica says, you have a gem of a wife who must love you dearly to get 4 busses every day to come and visit you. Sending wishes for a speedy recovery and hope you are soon home again. Keep posting on the forum and moan if you want to, you have been through so much these past few weeks you are entitled to. Take care
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Oh! Dear @Unclejack I am only echoing what the others have said. We are here for you, you are not moaning. Sending you love & I so hope your pain eases soon. Also love & virtual support for your dear wife. We are thinking of her also
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@Sisi @Willow @Duncan @Erica @Lyndam @Chrisy D. Thanks ever so much on behalf of my wife and myself for the great support it is so appreciated. Haven’t seen the sun or rain for five weeks! Beginning to look really ill colour changing slowly. Blood count surprisingly stable. They took me off oral antibiotics the day after I was put on them. Perhaps it’s all due to my personal diet not being followed! Missing all those blueberries, dark chocolate, oily fish, mushrooms, grapes, green tea, walnuts, Brazil nuts greek yogurt etc. I am in a room with one other person he has the window section of the room. Anyway will keep posting as long as I can I hope everyone is well, best wishes Unclejack.
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@Unclejack Thanks so much for keeping us posted. You’ll be back home soon & can get back to all that lovely food! Really good to hear that your bloods are stable 
with love
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Thinking of you @Unclejack and your wife also. So sorry to hear you are back in hospital and for all you are going through. Thank you for updating us. My thoughts are with you. X
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This really sounds horrible for you and your wife @Unclejack, I’m so sorry to read you’ve been so poorly for so long.
I really feel for you. Is there any way you can request any of your preferred foods? I know if you’re vegan or have another special diet you can usually request that in hospital.
Have you made friends with any of your nurses? I bet you could ask for a couple of home comforts from a friendly face. Personally I would need some dark chocolate at the minimum! Maybe there’s a vending machine or café at the hospital that sells something you’d like, or a supermarket nearby a visitor could pop into for you? Time to think outside the box to meet those dietary needs!
And thinking of your wife, would she like to call the Blood Cancer UK nurses? I know they would offer very kindly advice and maybe help take some of the worries away from your wife. Anyway, call free on 0808 2080 888 (Option 1).
Get well soon and do keep posting, even if you feel like you’re moaning!
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Hi @Unclejack
Oh gosh. So sorry to hear you’ve been re-admitted. They really haven’t solved the mystery of your severe knee pain, have they -even after all this time and a skinful of different antibiotics that have wreaked havoc on your gut! ! Either they still haven’t found the right antibiotic or the cause isn’t a bacterial infection -especially since they don’t appear to have isolated anything? Somewhere or other in your records, there MUST be a record of the painkiller the ambulance folk gave you as everything has to be written down? We watch a lot of A and E and Ambulance TV programmes and I’m always surprised at how often they use KETAMINE as a painkiller! (Given I thought it’s also a Class B illegal drug -possibly being upgraded to Class A!).
Just hoping this time around, they can find the cause and get you some pain relief that doesn’t give you such worrying side effects of not knowing where you are.
Your wife’s a real stalwart doing all the bus journeys to visit you. She must miss you being at home too.
Please don’t worry about moaning. You’re entitled to feel frustrated and depressed after all you are going through and nobody would expect you to be a chipper cheeky chappie after all this! 
Hoping for some respite for you very soon.
Xx
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@Sisi @Duncan @Erica @Lyndam @Willow @ChrissyD and all. Sunday/Monday turned into a very strange couple of days. One of the doctors informed me that the knee washing out would be repeated Monday am. I had another blood test in preparation. My haemoglobin had fallen below the minimum level so at 1 am Monday morning I had a 3 hour long blood transfusion. I was told at 8am Monday morning to put on hospital gown etc and prepare for the procedure. Nil by mouth so no breakfast. A doctor informed me that a team meeting to discuss the repeated procedure was taking place. About 40 minutes later a nurse appeared in my bay and informed me to order my breakfast as the procedure had been cancelled!! So off with the operation uniform and day clothes back on. Yes a very strange day. Our NHS is sinking faster than the Titanic. The upcoming strike next week will send many to a likely early grave. I wish someone could explain what is going on. Best wishes to all Unclejack.
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So sorry to read your update and tough time you’re having @Unclejack
Hoping things improve in the coming days
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Oh @Unclejack Don’t look at me to explain what is going on I am as confused as you are.
Never a dull moment, perhaps you might consider writing a book,
Thinking of you and your wife xx
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Oh @Unclejack 
Thinking of you. Please keep us updated
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