30th June - 114 days post transplant

This week has had its ups and downs. I had a couple of days with a very bad stomach and felt extremely nauseaus. From Thursday I have been very good, except for the fact that I think my blood pressure may be on the low side. Seem to get a bit dizzy when I stand up. I am now down to one tacrominus in the morning and this change may the reason, but will sort it out next Friday when I see the consultant.

A first was acheieved on Friday. Chris and Sarah Broughton took me out to a pub in the country and I had a wonderful lunch of scambi, chips and peas without any feeling of nausea. It was just nice to be out in the community again, even though it was for a short time. This was repeated today when Tizzy, my daughter took me out for lunch. I pushed the boundaries further and had gammon, fried egg, chips, peas and a pinneable ring. Orange and lemonade was the chosen drink on both occassions - cannot cope with anything alcoholic! It does seem as if it is smell that is causing me to feel nauseaus as both meals did not have any overpowering smell, whereas a meal of mixed greens, potatoes and a meat with gravey does.

Still have the sweet metallic taste in my mouth, but this mainly a problem from late afternoon. It does seem to be going slowly.

The church house group that Nigel Greenslade belongs to at Brickhill Baptist Church came round Thursday evening and sorted my garden out for me. They did a marvelous job and stayed afterwards for refreshments - it was nice to have fellowship with them.

23rd June - 107 days post transplant

Well, no visit to Addenbrooks this week and I am in to my second 100 days stint. The week has been reasonable, with only a few days when my stomach really complained about having to accept food. Nausea has been a bit problematical and rather than bee a martyr I have succumbed to taking the anti-nausea pills which do seem to work to a large degree.

Still eating small meals and the weight is staying about the same. Hair is really starting to come back, though I guess it will be quite some time before I get a decent head of hair.

Skin is still flaking off. Maybe I should take shares in the company that makes E45 what with the amount I use every morning.

Made a couple of trips out to garden centres for coffee - got to start mixing with people, but this is fairly safe as there are not many people around on a school afternoon.

I know most of you are complaining about the weather, but I for one find it good as I am house bound the majority of the time!!

16th June - 100 days post transplant YEAH!

Well today, Saturday, is the first major marker after leaving hospital. The first 100 days are a very critical and I have made it through without any major problems. No GvHD and no CMV.

All I can say is that God is good!!

I now face the next 100 days when drugs are reduced and I pray that we get through this time as easily as the first 100 days. I have now started on a Tacrolimus reduction program and come of the drug mid July. Tacrolimus keeps the immune system low so as to try to avoid rejection and enable the new stem cells to become encrafted, so reducing the drug brings the immune system back on line and hopefully nothing will happen. There is the possibility of chronic GvHD, but this can also happen up to the end of the 2nd year following transplant. Getting back to 100% fitness is going to be a long haul.

Well Friday was one of those days! Had a bone marrow aspirate, this was the 4th I have had and it gets no easier, my backside is still sore. The results of this will be key to how my recovery is going so I am hoping that the results from this will be positive.

My Haemoglobin had fallen again and is now at 11.9, but my platelets were up at 102. Neutrophils were down at 1.61. Dr Crawley was not concerned and only wants to see me in three weeks time and no blood tests in the interim, so I guess this must be a positive. I had two of my drugs stopped, so am down from taking 22 tablets daily to 17.

Hair has started to grow, though I must admit that I look like a badly plucked turkey - not a pretty sight!! I have to shave daily now otherwise Mary complains.

9th June - 93 days post transplant

Sorry for the delay in this weeks update. Friday was just bloods and I do not have the details. I guess they must be OK as no one has called me from the hospital. Weight was also done which showed a slight increase. Mary's force feeding must be doing the trick!!

Was not feeling that brilliant over the weekend; I think I might have over done it a bit; and just forgot about writing my blog. Nothing too much to report. Stomach and nausea still being a problem. Skin is now dry all over my body and flaking off. E45 being applied in copious doses. A start has been made on the reduction of Tacrolimus - the drug which suppresses my immune system. It will be interesting to see what happens as the amount of Tacrolimus reduces.

Discovered on Friday that I cannot have the drug to reduce my iron overload until I have had another bank of tests. Got to have my hearing checked, eyes checked and another heart scan. I think that only leaves the brain to be studied and they may have a problem finding that as I think it has gone on holiday considering the amount of things I seem to be forgetting right now.

Had the "bum fluff" shaved of my head over the weekend so that I don't look so daft. Hair is coming back on my chest and I now need to shave daily. All good progress.

I see the consultant this coming Friday so let's see what that brings.

2nd June - 86 days post transplant

Sorry all followers, I forgot to hit the publish button.

Friday was an interesting day. Weight has gone up slightly, bloods are fine as are platelets and neutrafils. Having chemo brain I forgot to pick up the results so cannot give you actual figures.

I was also given a reduction plan for Tacrolimus (immune suppression drug) which starts on the 8th June and I stop taking the drug on the 18th June. Of course there is always a catch!!! Bringing my immune system back up slowly may cause Graft versus Host Disease to kick in which I hope does not happen!!

Now this may be the reduction of one tablet, but to make up for it they have added another to the pot. This is a tablet to reduce the iron overload that I am suffering from due to the blood transfusions I have had over the last year or so.

Another little present I received to day was my appointment for a bone marrow biopsy for the 15th June. Aren't I the lucky one!!! Now where's that cloth I was biting on the last time I had it done!!

My GP now wants to see me as my yearly heart review blood test has shown that I have a high glucose level of 6.7. Apparently 7.0 puts me in the diabetic category - wonderful!! However my consultant at Addenbrookes says that it could well be caused by the Tacrolimus so it looks as if it is going to be another waiting game to see what happens when the Tacrolimus is reduced/stopped. I think my body would suffer less if it was playing rugby for Wales against England!

I did have a couple of poor days this week. It transpires that I managed to overdose by 2 tablets on my new drug that fights chest infection - result could not sleep (got maximum 2 hours sleep one night) and was feeling sick for a couple of days. Trust me to foul it up!