Day 1307

The New Forest is showing a few tints already, feeling cooler and autumnal today. I will be interested in what your GP says. I don't like saying to them 'I saw this on the internet ...' and hear them groan inside. 

Going back to Greg's original post, it did 'feel' different when I went to the hospital yesterday. For so long it was a place of dread - it's so busy in the entrance area, like going through a railway station, but with people in wheelchairs instead of people wheeling luggage. Now I feel I can cope with the busyness and crowds after being a scared hermit for so long. If I have some time to spare I head for the Macmillan Centre and garden as a refuge of calm. 

Tessa

Good to hear you are doing so well, Tessa.  I also don't come to read here every day.  Perhaps we all go through a period of needing some distance from the treatment and to find some normality.  The hospital now seems so familiar that I don't notice the surroundings.  Like you, though, I take myself down to the Macmillan centre and garden if I am there for any time.  Lovely haven of peace. 

I have never found anything online that relates my CD4 count to any scale of normality.  Mine remains low, but the hospital has suggested starting the revaccination programme anyway. 

I have had an ongoing problem with very stiff and painful joints all over, since April.  All tests have proved negative and the consultant finally wondered if it might be Aciclovir toxicity.  He swapped me onto Famciclovir and - hey presto! - the joint problem has gone away.  Something else unexpected to put down to experience! 

I have been gardening for a long time, albeit carefully.  It doesn't seem to have done anything to boost my CD4 count!  I still drink boiled water and eat no shellfish, but I have been eating runny eggs ever since the guidance to pregnant women changed and British Lion-marked eggs were deemed salmonella free. 

Returning to a tap dancing class in a week!  First one in two and a half years. I have found a small group with four sympathetic students who will keep lurgies away from me. 

We also managed three days away in Kent last week, in a good b&b with high standards.  First break in three years!  Managed to visit outdoor gardens and historic houses.

It's a long haul, but we are still seeing progress. I feel completely well now.  Stable blood counts and no infections. Just waiting for the immune system to catch up. 

Sheri 

Well, spoke too soon. Doctor doesn't like my recent blood tests and wants me to have a bone marrow biopsy tomorrow morning. At least I don't have to sit and worry for too long, but I know it takes a few weeks for the results to come through. That will be the hard part.

Oddly I was reading something about resilience this morning, and the importance of maintaining a feeling of control. So this afternoon I have been madly cleaning and tidying the house. Just the ironing to do. And I don't feel especially tired, hard to believe there might be something wrong.

I'm 824 days post allo. As I understand it, the risk of relapse at this stage is only 5%.

Tessa

Ah Tessa ((hugs)) and fingers crossed  xx

((((Tessa)))  Big ones. 

When my blood counts went haywire, it turned out to be a toxic reaction to the medication I was taking at the time - then Cyclosporine, but I've had another toxic reaction to the Aciclovir I have been taking for 2 1/2 years. 

Not invariably a sinister explanation, by any means.   

Sending love and positive thoughts down the M27. 

Sheri xx

Oh Tessa, 

sending hopeful hugs xxx

Doctor says it might be reaction to co-trimoxazole which they took me off last week. Platelets and haemoglobin down, neutrophils plummeted, so it's back onto very careful hygiene regime, and not exhausting myself or going too far from home. Will be having blood tests twice weekly to monitor and they have changed my antibiotic.

Tessa

I would take this as good news Tessa 

((hugs)) xx

Far be it for me to speculate on the basis of my non-existant medical knowledge - but that is exactly the pattern my medication toxicity followed, too. 

Have a good rest and look after yourself.  Lots of feet up and telly! 

Sheri  xx

Greg, what a beautiful thought. Thank you for sharing.

Tessa, hang in there. I hope it ends up being a relatively easy fix.

With love,