D+35 - "The Times They Are A-Changin'* "

I have been feeling much better for the last three days. It's as though a switch has been thrown and I feel as though a great weight has been lifted. Quite why this has happened I don't understand so I don't know what I can do to sustain the change apart from using commonsense and looking after myself as best I can. Fortunately Karine is very good at this! With better energy levels I've been able to eat and drink more and have felt much steadier on my feet. My weight has gone up this week. Admittedly I think I was getting a little dry over the weekend which reflected the fact that I was really struggling to eat and drink anything very much.

Lucy and Mike came down to Nottingham for the day on Tuesday to give Karine a break and to 'babysit' me! Karine went out for several hours and had a lovely time in town with friends. I managed to walk around the block which is a distance of just under a mile and managed the same feat again the next day. It was lovely to see my sister/stem cell donor! and spend some time together. Karine and I are very grateful to them for everything they have done for us.

Lucy commented that there had been quite a long gap between the two previous blogs and that people may wonder what is happening or may give up looking to see if there is a new entry. I'm afraid I felt so awful that I just didn't feel like bothering and anyway what I had to say would be just me moaning and complaining which would be rather dismal and not very interesting. I've tried to put something positive into each blog entry and to finish on a positive note. She suggested that I should write an entry at least twice a week however short and I wouldn't dare disobey! so I will try and stick to that resolution! Also I think there is a 'follow' function on the 'blogger' site somewhere so that when I post a new entry the system sends you an email notification.

Been to clinic this morning and seen Prof Russell who very was pleased with my progress. My blood counts are stable or slowly rising so I'm back to see him in a week hopefully with a preliminary result from Tuesday's bone marrow aspirate. This will tell me how well the graft has taken and that I'm still in remission. At some point I'll get a result on chimerism, I'm not sure when this comes into play! More on this anon.

We saw the dietician today as well because of my weight loss in the previous two weeks. After reviewing my diet she said I was being fed really well. Karine was given a metaphorical gold star for managing so well under such difficult circumstances.

The Haematology Outpatient Department and the Day Case Unit at the City Hospital both work very efficiently. It is unusual to be kept waiting very long. On arrival on an OPD day and having booked in you pick up a numbered card for blood tests. Being a haematology dept everyone has blood tests every time! Usually your number is called within about five minutes. About ten minutes later the consultant calls you through, usually Prof Russell because I'm on a trial called 'Figaro' which he is very involved in. The haematology results are already on his desk and we discuss the various issues.
On DCU days you book in at a different desk and see one of two specialist Bone Marrow Transplant nurses who takes my blood, nips round the back and re-emerges five minutes later with the blood count results. There is then plenty of time to discuss symptoms, problems and next steps etc. They have immediate access to Prof if they need his advice.

We are usually home in a under an hour and a half, occasionally within the hour. This compares sharply with the U.S. system where the patient has more freedom to choose the date of their appointment but then is very frequently kept waiting for hours. Karine sent me an interesting article a few weeks ago written by someone with experience as a patient in both systems. Amongst other things it compares outpatient experiences. If you're interested here is the link.  US or UK   Stand up Britain and take a bow!!

Finally, I shall be glad when I get the preliminary results from next Tuesday's Bone Marrow Aspirate. Waiting for the result is always a bit of a wind up although nothing like waiting for the one after the first cycle which was more like waiting to hear whether I had been given a life sentence or a death sentence. We all expect this one to be OK at the very least. The odds are in my favour for once but the uncertainty whilst waiting is still not easy, especially at 3am!

*Bob Dylan - Title track of his third album