HAPPY EASTER

Dear All,

Just heard on the news that its the coldest easter day since records began.  All I know is I just had to turn the central heating up...and it tried to snow again yesterday.  Our birds are being well fed with seed. They are busy visitors at the moment; the Robins are starting to nest build and fly in to grab pieces of moss and tiny twiglets. 

It has been a weird week.  I am still completely shattered and finding it hard to get out of bed. I have no energy at all and tend to do a lot of flopping about when I have managed to get up and dressed. I sleep a lot too.  Its horrible. I hate being so lacking in umphh.  Yet I feel happiest when I am under the duvet at whatever time of day.  I guess part of this is what the nurses tell me is chronic fatigue syndrome and the other bit is some kind of depression which has settled around me.  I am not, at least, feeling so out of sorts as I did when I last wrote. Slowly slowly starting to re-engage with the house and my old rhythm.  But I am frustrated at the time everything is taking.  Luigi is still having to help me climb up and down the stairs.  My legs are so weak and stairs are a real challenge.  Still struggling too with this bladder infection, which wakes me on the hour every hour during the night. Another good reason I guess for feeling so tired and wiped out. A decent nights sleep would do me the world of good.

Three out of five days last week I spent at the HOP clinic having blood tests and receiving various intravenous liquids.  Doctors are pleased so far with how the transplant is going. I think my system now shows 100% donor blood cells - something known as chimerism. Anyway, its good.  Visits to the clinic are always exhausting. Mainly a lot of just hanging around waiting, either for tests to be done or results to be had or doctors to see.  Last thursday I got in at 9.30 and got home at 4.30... its almost like a full working day.

Hope everyone is well and having a good holiday weekend.  Messages are still tumbling in which is so great. It is lovely to hear from so many people. I am amazed that you all still check in!  Your support is much appreciated as I am sure you all know.  Sorry for dull blog, but it has been hard work just writing this, both physically and mentally - my my, I gotta stop moaning.  I am still OUT which is the best thing. I dread the thought of having to go back in.  God forbid. Catch you all soon, big  hug around the globe.  tch xx

HOME

Dear all,

Unbelievably came home on Friday afternoon! It all feels very weird after six weeks in hospital. I think it's called institutionilasation. Should feel extatic to be here looking out into my garden, but feel strangely cut off from it all. Also incredibly tired and too full of drugs. They have put me on an anti depressant which will take a few weeks to kick in. Will write more when i am feeling more normal. This blog just to touch base and say that I am back at Grassmount. The garden is full of birds. Back soon tch xxx

NEWS FROM ROOM 10

Dear all,
Sorry such another big gap between blog updates. Been too tired and too wiped out to get it together enough to tip tap on my ipad. This afternoon there is some strange force from somewhere which I am taking advantage of...

My catheter was taken out at 4am yesterday morning. I wish I could report that everything is better and the pain has all cleared up, but alas not able too. Still Ina lot of pain and still needing to pee outrageously frequently. The doctors say it will settle down eventually. Blimey, eventually isn't soon enough for me! They are also giving me heaps of medications and some anti depressant type thing, which is supposed to make me more jolly, increase my appetite and calm me down. It works to a point but I just feel so drugged up all the time and constantly falling asleep. I have got very agitated and anxious recently, which has given me further layer of problems to cope with. My coping strategies are wearing thin. Lost a lot of weight too and my mobility is very weak. Oh dear, busy days at Havelock Walk seem a long way away. I guess eventually they will return...along with everything else.

Thanks for all your messages, in what ever form they arrive. They have kept me afloat through these dark and difficult days. I really hope soon I will be blogging that I am on my way home. In the meantime it's on with the drain pipe view and my bleeping machines and dreadful hospital food...much love to everyone, everywhere, tch xxxx

Ps even lost touch with the football so have no idea if Utd are still top or what....

LIVING AT KINGS

Unremitting. Extremely painful. Days meld into one another. Never imagined being ill would be such a nightmare. One day at a time. May get Botox injection for my bladder. Will know tomorrow. Sorry not to be brighter, but this is really taking its toll. Much love to everyone everywhere. tch xx