Just wrestled with sexy green support stockings and cut about 9-10 cm off top so they fit under knee.
Have wrestle before shower getting (limbo) waterproof picc line protector on, then getting same off after!
Getting a bit of exercise in.
Feeling brighter, less discomfort- I’ll keep you posted 
Xx
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Hi @ChrisCKW, life really can be a struggle and the green support stockings are definitely a fashion statement.
The waterproof picc line protector sounds tricky.
I hope you feel better after a bit of exercise, I always do.
I am so glad that you are feeling brighter, don’t do my usual thing and feeling better and then overdoing it.
Yes, please do keep us posted.
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@ChrisCKW, I know I shouldn’t laugh but I remember those moments. Such a struggle - like you said, you must’ve burnt lots and lots of calories! It’s really nice to know you are feeling a little better. Keep us updated. Hope you have a comfortable night 
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Thanks @Nichola75 and @Erica, antibiotics seem to be working, so fingers crossed - planning escape Saturday.
Monday afternoon I’ll find out what plan is for chemo/progressing towards STC. Chemo not been v successful so far!
Xxxxxx
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Hi @ChrisCKW I hope your escape plan works Saturday.
Please let us know the plan after your Monday afternoon appointment.
You really are doing brilliantly.
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I agree with @Erica, you are doing so well. If your plan fails we will come and save you! Fingers crossed that everything is good for Saturday! X
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Hope Saturday went well @ChrisCKW . Keep on keeping on!
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Got home eventually Saturday. Trying to build up stamina little by little, over 4 weeks in hospital and on 4 diff types of ABs has zapped me.
I have antibodies to donated platelets unless they are hla matched, so fingers crossed platelet donations now will help!
Today is the MDT meeting to decide my (and others) plan. Keep those fingers crossed.
Blood on Weds then telephone appointments with 2 different consultants on Thursday.
Rather anxious 
Xxxxxx
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At least you are home at last @ChrisCKW. I am trying to type this with my fingers crossed for you, apologies.
I bet you are rather anxious, that sounds very natural to me, it is a big thing for you and your life.
Perhaps Thursday is going to be extremely stressful for you, that waiting for the phone to ring.
Don’t forget my trick of getting everything written down including fears, thoughts, feelings, questions, medical history, medications and practicalities so you feel prepared.
Also this is your time to ask everything to want to, you go for it and I await hearing how you get on. Good Luck and spoil yourself, you deserve it.
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I have everything crossed for you. It must be such a worry and I completely get how anxious you must feel. As Erica said, get everything written down. I am sending extra special wishes and positive thoughts your way. I’ll be thinking off you on Thursday. Please take care. Lots of love X
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Thank you @Erica and @Nichola75 - I do have my list of questions, but my fear is where I go if I can’t have SCT and the usual palliative drug Azacitidine appears to make me very ill.
Anyway, a friend sent me a course on felting so today I shall be on part 2 of making a bluetit. I’ll have to concentrate on that, so that’s a step outside my problems for an hour.
Hugs and thank you both for the care and support and friendship xxx
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It’s so important to have that time to focus on something else - something that takes your mind away from all those hard thoughts - self-care is hard sometimes but essential!
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Hi @ChrisCKW I have found it important to be honest during consultations and ask the question around my fears and also those follow up questions till I have an honest answer.
Oh, felting sounds great therapy to me and I love the colourings on bluetits. I kept on seeing the same robin (or I think it was) on my walks round a local rec today, I wonder what it was thinking seeing me ???
I bet your hour felting ‘flies’ by, enjoy !!
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Off for another bone marrow aspiration on Tuesday - they really are a pain in the butt! 
But things look as though I’m still heading for SCT. That’s good because so far Azacitidine doesn’t really like me much.
Bloods minimal but stable - will tell you more after Tuesday.
Hugs and happy weekend all xxxxx
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Hi @ChrisCKW. Thanks for keeping us updated. I think I’m with you on the bone marrow aspiration - my least favourite thing! I know how poorly you’ve been with recent treatment so the other option sounds positive. I’ll be thinking of you on Tuesday and will wait to hear. Lots of love X
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Hi @ChrisCKW a brilliant description for a bone marrow aspiration.
I hope it goes as well as it can Tuesday and please tell us how Tuesday goes, the results and way forward for you.
Yes, happy weekend to you and look after yourself and spoil yourself.
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Well yesterday was fun! 
Ouch. And today is a no shower day - fortunately I don’t have visitors 
(to be honest I never get visitors)
Got confirmation of appointment for lungs, heart and kidney testing pre SCT all on same day early June. (Which is good news as Addenbrookes is over an hour’s drive each way and parking is exorbitant)
Bloods v low but stable.
Result of BMA/biopsy next Monday sometime.
So me and my sore butt signing off …
Xx
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Hi @ChrisCKW, it sounds an interesting way of putting it that yesterday was ‘fun’ !!!
No shower day is always horrible.
When I had skin cancer on the top of my head I had an op and a skin graft was taken from my leg. I was told no showers or baths for 12 weeks.
When I went back after 12 weeks the consultant said you can now shower and wash your hair, I didn’t dare say that I had been wearing a very fetching shower cap and loads of cling film taped round my leg for several weeks and even washed my hair after I had had the staples out of my head and the wound had really healed. I now have a bird bath feature on the top of my head.
Doesn’t it make a difference to get a date in the diary and all pre SCT tests done on the same day.
I hope your butt soon gets better, hope you’ve got a rubber ring to sit on.
Let us know the result of your BMA/biopsy when you get it.
Take care.
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Hi @ChrisCKW I think I had the same pre transplant tests that you’re due to have. They’re fairly harmless on the whole, just a lot of waiting around. Bring a good book or some music! I remember for the lung test I had a really hyper man who kept putting me off and yelling at me like a demented personal trainer whilst I was trying to do it. The stem cell harvest was the worst part of the whole process rather than these tests as it went on for hours and the chairs you had to sit in were really uncomfortable. Good lukc with this 
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Thanks Franco! It’s good to ‘know’ someone who has been through the process.
I’m still giggling at the thought of an over enthusiastic lung function tester shouting ‘big breath, now push that breath out, come on! Fiercer!’
I shall be disappointed if I don’t get one like yours.
Always have music on my iPhone, but good tip to ensure I have ear buds.
I’m there for so many hours I think I’ll need to take something to eat for lunchtime …
Thanks for your help and if I get questions before I go I’ll ping you with them, if that’s ok? X
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