In fact following visits from my friend Jan: including some guitar playing and song and prayer - a couple of hours light relief. Then Angy, from work, came and illuminated the hour with humour, healing stones and angels. Friday was a day of diverse spirituality, humour and friendship. I'm blessed.
Kym has been a rock of salvation for my health, well-being and courage. It's been wonderful to feel the care. Now I know what the cats feel like. Meiou! She's stepped aside from her work and made me her mission. I'm an independent soul; but I haven't been able to refuse her attention. It has kept me on the right path.
Saturday and Sunday were reasonable days: not too much fatigue - we even popped to ASDA. Found the crowd slightly overwhelming but the prospect of an academic inspection of the Ale aisle was enough to keep me calm and sufficiently energised to walk to the far end of the store. Unfortunately we missed church. I still have to wary of the environment and avoid potential health hazards and cold due to my diminished immune system.
James came up from London and spent the afternoon with us; which was a highlight. Unfortunately I felt fatigued but we enjoyed our little time together. Over the weekend It was good to be able to chat separately with Anna and Sarah. their lives have to get along without ay anxieties spilling over from my condition.
Despite cup giant-killing adventures Birmingham now can give the league their full attention. say no more about that.
I made a great discovery on Friday which was not fully revealed until Tuesday - socks. Socks that do not trap your ankles and compromise your circulation. Via Amazon - I found them from a company near Hinkley. when I eased them over my (slightly puffed) ankles they were like a velvet glove - well sock that is. Wore them all day - including the hospital and I've given them a 5 star review.
HJ HALL Diabetic HJ1351 Men's Socks (there's a link in the blue text)
Tried some Yoga and massage to help get my lymphatic system moving. I've kept up with the massage - but need more advice on the yoga. I have felt the benefits of the massage and can feel fluid moving. The one yoga "move" that has produced benefits involves raising my legs above my head and lifting and lowering them. This seems to have reduced the prominence of my ugly varicose veins in my right leg and thigh - a positive!!
The consultation we had on Tuesday 26th was a bit of a mixed bag. The lympocyte count was well down and the other blood elements were pretty acceptable - that all was good news. However - there are plenty of "howevers" in this story - they have discovered a genetic defect! I knew I have plenty of defects; but genetics wasn't one!
We have 23 pairs of chromosomes; 46 in all. Two pairs of mine have fractured and they are monocloning - that is replicating the broken individuals and not the joined pair. That is a very incomplete, inadequate description.
The consequence of this is that I can't be treated at the Luton & Dunstable Hospital any longer. It needs a higher grade of Consultant, drugs and technology. It's much more risky and will involve additional, targeted chemo-therapy and possibly some time in isolation. Then it will be necessary to have a doner bone marrow transplant. The up side is that this will cure the problem. The down side has a number of issues that I won't elaborate at present.
So a referral has been made to a Professor at University College Hospital, near Euston in London. We await the call. A referral has also been made to the Macmillan Home Nursing - for support.
It's another step up in the treatment. But one that is now necessary.
It completely messed up our sleep patterns. I tried to keep off the sleepers but will have to reconsider that moving forwards.
Today is Thursday and we tripped out to Hitchin for a little pre-next step jolly. It's the furthest I've been for four weeks and the longest time I've been out of the house for that period. We did a mooch around - I won't tell you what stuff we bought! I did have some guilt pangs as we sat eating fish and chips in the Sun Hotel. I loved being with Km out of the home. But I can now only focus on the process of wellness leading to recovery.
A nice photo from Hitchin. Shame about framing and focus!
I've had to give myself something to keep my mind off worrying etc. I bought through an ebay auction a used Macbook pro from prehistoric times and am fixing it up as a cultishly cool laptop for writing, a bit of design and some audio recording. I've successfully upgraded the hard drive, cleaned it out and loaded up the software I want. Some stuff I want won't work because of its hardware and firmware limitations; but I will get a good machine going out of it. I had to sell some stuff to get it. That's it with spending from now on. We are of reduced financial means now and trips to London won't be cheap. But at least I get free prescriptions.
I think that's probably all for now.
Let's all look forward to a good week,
Roger
We have 23 pairs of chromosomes; 46 in all. Two pairs of mine have fractured and they are monocloning - that is replicating the broken individuals and not the joined pair. That is a very incomplete, inadequate description.
The consequence of this is that I can't be treated at the Luton & Dunstable Hospital any longer. It needs a higher grade of Consultant, drugs and technology. It's much more risky and will involve additional, targeted chemo-therapy and possibly some time in isolation. Then it will be necessary to have a doner bone marrow transplant. The up side is that this will cure the problem. The down side has a number of issues that I won't elaborate at present.
So a referral has been made to a Professor at University College Hospital, near Euston in London. We await the call. A referral has also been made to the Macmillan Home Nursing - for support.
It's another step up in the treatment. But one that is now necessary.
It completely messed up our sleep patterns. I tried to keep off the sleepers but will have to reconsider that moving forwards.
Today is Thursday and we tripped out to Hitchin for a little pre-next step jolly. It's the furthest I've been for four weeks and the longest time I've been out of the house for that period. We did a mooch around - I won't tell you what stuff we bought! I did have some guilt pangs as we sat eating fish and chips in the Sun Hotel. I loved being with Km out of the home. But I can now only focus on the process of wellness leading to recovery.
A nice photo from Hitchin. Shame about framing and focus!
I've had to give myself something to keep my mind off worrying etc. I bought through an ebay auction a used Macbook pro from prehistoric times and am fixing it up as a cultishly cool laptop for writing, a bit of design and some audio recording. I've successfully upgraded the hard drive, cleaned it out and loaded up the software I want. Some stuff I want won't work because of its hardware and firmware limitations; but I will get a good machine going out of it. I had to sell some stuff to get it. That's it with spending from now on. We are of reduced financial means now and trips to London won't be cheap. But at least I get free prescriptions.
I think that's probably all for now.
Let's all look forward to a good week,
Roger
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