And the weather looks like it’s getting better so a that will make the courtyard look even better. Take care and keep us updated. Sending lots of love X
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I understand exactly where you are coming from @ChrisCKW . I was in hospital for 9 weeks initially and then a further 3 weeks for my transplant and I’ve never had a more exhausting time. The constant obs, taking blood. Well meaning nurses rearranging everything and making life more difficult and on top of that the daily visit from the physios. I didn’t even get much time to myself at weekends. I took every opportunity I got to have a nap and when I wasn’t sleeping watching something on i-player. One of my visitors gave me her spare kindle and it had lots of Agatha Christie and Ruth Rendell books downloaded on it which are my favourites. Some visitors tried to bring me magazines or puzzle books but I actually just wanted to switch off and NOT engage my brain! During my transplant I was on frequent antibiotic drips at all times of the day and night and had to actually tell the staff that they were exhausting me and I needed a couple of hours on my own! I was relieved when I went home both times…
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Hi Chris. I was diagnosed with CMML in November 2017 (well it was actually confirmed for definite on Christmas Eve 2017 - a nice Christmas present) and as you say it is hard to find anyone else with the disease and in ay case it does seem to be very variable. Too old for a SCT I was on active monitoring for 12 months but then some skin changes identified that the leukaemia had infiltrated the skin and I was started on Hydroxycarbamide. This kept blood counts reasonably stable for 12 months but over the past year have been increased again and again to try to lower white counts but have had the same effect on Hgb and platelets.
I suspected that the haematologists were getting concerned when they were wanting weekly blood tests, an ultrasound of spleen and liver and referral to the renal clinic for a serious decline in kidney function.
The last month has been manic. When I was asked to see the consultant face to face 2 weeks ago I was told that I needed to start on Azacitidine immediately and have now had my first cycle (plus two blood transfusions)
I seem the to spending most of my time at hospital. Like you it leaves horrible red patches and bruising. What with blood tests, blood transfusions, chemo injections and a kidney biopsy in the near future I shall soon be leaking. Its certainly a rocky road and I do hope that things are getting better for you. I know how you feel and mentally it is very hard. Best wishes.
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@mrew I was also diagnosed in 2003 at Christmas time, with CLL, luckily just in time to let people know in Christmas cards. I sent a card to an acquaintance in Los Angeles and it crossed with hers that said she had just had the same diagnosis. We have been close email pals ever since.
You demonstrate the benefit of this forum in the way you have responded to @ChrisCKW. yes it is so tough isn’t it, we rapidly learn a new language and our lives revolve around medical appointments. As you say, when you are dealing with all the horrible symptoms and side effects your life becomes manic mentally, physically and practically, so stressful and oh, so tiring.
I find just sharing my experiences on this forum with people that know and will understand somehow helps me. Take care @mrew and @ChrisCKW
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We all travel such a tough road and whilst the medical treatment keeps us alive and gives us hope of a future the impact on freedom, fresh air, day to day life, ability to sleep and mental health is huge.
I was so isolated before I found this forum, it’s members and it’s good to believe I have friends who understand the battle. Hugs x
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Oh gosh, it really is a tough illness we share. You have been through the wringer.
I’ll keep my fingers crossed for the kidney biopsy, that sounds ouchy.
And you’re right - I have this image that one day I’ll be drinking something and, like a cartoon character, it will just squirt out of lots of holes!
Sending hugs xxx
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Hi @ChrisCKW I also see things visually in my mind, brilliant image, I am still laughing at it here.
I think that is why when I was first diagnosed I sort of wanted to pull the leukaemia out of my body.
Thinking of you.
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Hope things are going reasonably well. Sounds as though it is nice having an outside area although here in Sheffield it is sunny but still chilly especially since I live at a high elevation. Having given me a couple of bags of blood on Friday I have just had a call to get bloods tested today. Give with one hand and take with the other!!. But thank goodness for the NHS. I cannot fault the service and am so thankful that we do not have to worry about payment or insurance. Hope you have a good day and keep in touch if you want to.
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Well, things stable - temp and bloods, so I got the get out jail free card. HOME! After 22 days 
Have to have blood tests every Thursday and Monday. But hoping back on track for chemo and SCT soon.
Here is 20 miles east of Cambridge - Bury St Edmunds, Sheffield is more North and cool, but within the most beautiful part of England - Yorkshire south north and all other points are so beautiful.
Nice to meet you Mrew, stay safe x
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That’s really amazing news!!!
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I think so! 
In my clean bed, in my own pjs, can get up and make tea in the morning and feeling so much happier xx
Hugs Nichola
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Oh @ChrisCKW that is absolutely brilliant news and there is nothing like your own bed and PJ’s.
I expect that you feel better already, but exhausted. I bet that tea will be the best cuppa ever!!!
Take lots of special care of yourself and keep posting
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Fantastic news. Have a good night.
Mike
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Bigger hugs back. Have a wonderful nights sleep X
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Yes I remember the feeling when I had my first night back in my own bed after leaving hospital @ChrisCKW . It was strange but wonderful and slowly learning to live life again without a constant barrage of nurses taking over your life!
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Sadly being back at home lasted no time at all. Back in the Mm ward since Friday. But ABs and bloods helping some … temp down was at 40 but blood pressure low . Infection markers all falling, fingers crossed they will finds out what the devil is wrong xx
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Hi @ChrisCKW, so sorry to hear your back in hospital again. We can only imagine how you must be feeling, but it’s great to hear that your temperature is down and results are looking on the positive. We hope the doctors are able to figure out what’s wrong and take the necessary steps for you to have speedy recovery. Do let us know how you get on.
Best Wishes
Bav
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Oh @ChrisCKW, no, your time at home did not last long, I cannot imagine what and how you are feeling.
What can I say but take lots of care and yes, let’s hope they find out what the devil is wrong.
We are here to support you so please keep posting what is going on for you, we are here for you to say how it really is.
Take care.
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Really sorry to hear that! I’m glad you are in the right place where they can take care and really hope you get back home to your comfy bed soon 
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