moving on

picc line out...what joy - a free arm and no flapping pipes to hide under sleeves! Final bone marrow on Wednesday... and then onto monthly appointments for blood tests. Luigi and I did the Havelock Walk Open Studio this weekend just gone. God it was freezing, but managed to hug a radiator most of the day. It was good to do something normal for a change. Am exhausted now though! Frozen shoulder is hideous and really dibilitating. I am so hacked off that I am unable to drive or even do a shoe lace up.
Seems I cannot see orthopaedic consultant till January...so will have to chase the hospital yet again to see if the date can be brought forward. Meantime I will trust in the Bowen technique - have got another session this week. Waiting for snow.

almost there

Neutrophils 1.4 - so out of the danger zone! White blood counts on the up too - but may need blood transfusion on Thursday. Everything looking good apart from frozen shoulder - which has got worse and moved down my arm and into my fingers. Had
a physio appointment today - they say could take up to 2 years to clear up - have been given exercises to prevent "muscle wastage". All things difficult to do: dressing/bathing etc, cannot drive or use etching press. A right old pain; quite literally.
Last few visits to the Day Unit - hope to have picc line taken out next week, and my final bone marrow done... then I will just have to turn up once a month (for a year) for a blood test to check that everything is doing what it should be doing. If I can get through the year intact, the chance of relapse gets less. So now its just onward and upward...

going up

Friday: neutrophils up to 0.6 - white blood cells 0.9 and everything else going up slowly too! Some days good, some days exhausting and I am wiped out limp lettuce leaf style- but hanging on in there at home. I am hoping by next week blood counts will have gone up enough to not worry about getting infection and having to return to hospital. Taste returning slowly. Shoulder locked and frozen still - so a bit of a painful handicap which makes recovery slower - finally got a visit to the physiotherapist at Guys next week - so might get a bit of relief. Damp and grey - serious autumnal saturday afternoon. Needs crumpets... Hope all good for everyone. ciao tutti

sight for sore eyes

what with my white medical mask and my bald head, I get myself noticed walking in and out of the hospital - catwalk stuff!
still hanging on in there at home, still zero immune system, still in remission...hope everyone good. baci a tutti x

message from forest hill

Still at home! have managed 9 days so far - but today my neutrophils have finally dropped to 0.0 - so the long haul up starts from today. Day unit every other day for blood tests and check up. Monday had a double blood transfusion and platelets transfusion. Today an abdominal xray...god, always something!. The days in the day unit are long - get there for 10am and get to leave about 6pm. Exhausting. Am hoping I can keep myself infection free - but the world seems alive with coughs and colds and various nasties, so navigating a healthy path through all that lot with a zero immune system ain't going to be easy...Cold tonight so central heating up, and as I don't subscribe to Sky Sports, I will have to be wonderfully old fashioned and listen to the Manchester Derby on the radio (transistor even!)...moving on slowly. ciao tutti.

seeing wood through trees

big old sigh of relief...4 rounds of poison chemo cocktails /5 months of hospital and all the bleeping baggage that goes with it..summer long gone, autumn arrived, russet leaves and 4pm sunsets. This nightmare has an end in sight. Finally. Am at home chemo exhausted and laying flat out, but the joy of knowing that there is (hopefully) no more chemo to come and that maybe I am fixed, fills me like a ballon! I have still to loose all my white blood cells /neutrophils / and immune system will zero out in the next couple of days - so not out of danger yet - but hopefully will get through these next 3 weeks of minefield crossing without anything too disastrous happening. I am determined not to spend too much more time on samaritan ward...Luigi back home, cooking sausages with homemade italian tomato sauce, mash, and purple sprouting broccoli...cat curled in her basket, purring hard, washing machine tumbling, tv muttering, dark wild windy night outside. Sometimes the sounds of home are just perfect!
thanks for all messages and long enduring support from all followers around the globe - your presence has really helped me to get through this tough time. i really really appreciate it. A presto tutti. x