Tuesday… and another visit to Guy’s – and feeling more upbeat!

It has to be said that the last ten days have not been the best in my life, and just to pile it on, I took my diving medical yesterday (booked before the latest flare up) and failed, partly because I am not as fit as I should be, but mainly because the swollen lymph nodes in my neck are partly obstructing my airway. So it looks as if I won’t be diving in Cyprus. Worse, the doctor suggested that I might not pass a medical because of my medical history! However, I don’t give up that easily, and so while I have to accept that I can’t dive for the time being, I still have hopes of getting back into the water one day and sooner rather than later!

But onto Guy’s… and I must say I came away feeling a lot more positive than I have for a while. The PET scan result does not have me lighting up like a Christmas tree, but confirmed that the disease is mainly confined to the lymph nodes on the right hand side of my neck, with possibly a little activity in the deep nodes near my pancreas. I suppose it feels worse to me because of the physical effect it is having on my speech, which is a constant reminder, but in reality the extent is similar to that when I had my first post-transplant PET scan in March.

I saw Rob, the Specialist Registrar today, and we discussed a range of options. These include some drug regimes (including Thalidomide) and the possibility of chemotherapy. The problem with chemotherapy is that it wouldn’t do the donor lymphocytes any good, and while Thalidomide is an immune system modulator, it would work best with the donor lymphocytes, so the plan at the moment is to continue with the donor lymphocyte regime and keep the Thalidomide in reserve. The donor Lymphocytes should trigger off the GvHd, and more significantly, the desired Graft V Lymphoma effect that was working so spectacularly well up until August. Meanwhile if the nodes in my neck do get any bigger, local radiotherapy would serve to shrink them.

One other option, suggested by my friend (who I can now identify as Lisa), is for a second opinion at Southampton, where there is a centre of excellence in Lymphomas (particularly mantle cell lymphomas) and my doctor yesterday agreed to refer me there. I have also discussed this with the team at Guy’s, and they are quite happy, so we will see what happens with that approach.

I also saw Tammy (the stem cell scientist) who assured me that there are two remaining lymphocyte doses in the freezer, and she will keep them in the bank for me! If we need more, they can be obtained from the original donor, so wherever you are, please wrap up warmly, take care crossing the road etc… I may need you again! (For lymphocytes, not stem cells)

So that, and coupled with the autumn sunshine, has made me feel a WHOLE lot better and I can, with some conviction, continue Onwards and Upwards!

Some of you may have noticed (Gillian and Richard did – thank you for the record number of comments BTW!) that the system was off again last night. Having sorted everything out, when I came to look at how the data was distributed across the new disk drive, I wasn’t entirely satisfied, so while the computer was apart, I decided to tweak it again. In tech terms, I had to change the partition table, which meant saving all the data and repeating last week’s exercise! It went much more smoothly this time (it helps when you have some idea of what to do, rather than by learning on the fly) and most of the time was taken with copying the data back onto the new drive. But it is now pretty much as I want it!Comp1
And as a picture is worth 2000 words, here are a couple. The first shows the Linux machine (the web and blog server) in the foreground, with the old disk connected at the side. The big machine in the background is a dual boot Windows/Linux computer. Comp2
The RAID disks (disconnected) are on the top of it, and the RAID controller is resting on the top of the Linux machine. The second photo is just a close up of the Linux computer.

Back in the real world, the next major event is the Funeral and Memorial Service for my Father-in-Law on Friday. My next visit to Guy’s is on Monday.

And finally – the remaining conservatory furniture should be here by next Wednesday!

GvHd? Bring it on! Onwards & Upwards!


Saturday evening… ‘Geek Speak’

Back again, and thank you all for your kind words in the comments. I’m sorry that some didn’t appear immediately (those from John’s family) but the first post from a new source is always held for moderation as part of ‘SPAM’ prevention! But thank you – I think they have all been liberated now!.

And you may have noticed that the system has been down again today. This was a controlled and deliberate shutdown as part of an ongoing upgrade process to the server.

To recap, the blog and web sites are all hosted on a Linux machine (sitting at my feet) connected to an ADSL line. The machine was originally built about 2 1/2 years ago as a self teaching project for Linux – an operating system I had dabbled with in the past, but wanted to learn more about as it seemed to be a credible alternative to Windows.

I have learned a lot about Linux (and for everyday tasks, it is my machine of choice) by using it, and when I started hosting my own website (after taking over from friend Mark) it was the logical machine to run it on – after all, probably 80% of the internet runs on some form or *nix (generic unix like operating systems) and even more run the Apache web server, as do I.

However, running a website as a service carries some overhead, like maintaining resiliance and availability. The system is protected against power surges with a UPS, but the single point of failure is the hard drive, which is only relatively small at 80Gb, and is now about 65% full.

So I have been experimenting with RAID arrays (using two identical disks with one ‘mirroring’ the other so that if one fails, the other can continue). This has not been a great suceess, for reasons I am still trying to solve, but I think is an incompatability between the controller card and my system. So in the interim I have been trying to replace the original drive with a larger one, and use the old one for backups.

I am now at the stage where all the data has been copied across, but the new drive needs to be configured as the boot or main drive, and this is where the problem lies – I haven’t been able to get the new drive to ‘boot’ the system cleanly. (This was the problem on Monday night – I had got all the changes in place, bar one or two, but when the system was shutdown because of the prolonged power failure, it wouldn’t restart at all – and if it won’t restart, you can’t make changes… at least not without a rescue mode! ‘Chicken and egg’)

This afternoon I have been copying all the files across, and (I thought) getting the boot process sorted – but clearly not as the machine still wouldn’t boot from the new disk – so at the moment I am back in the old configuration. Just to compound matters, one of the small standby servers that puts up the “System down for maintenance” pages has expired, so I had to reconfigure another one. (They are little network file servers that have been hacked to turn them into low power Linux machines – normally they act as music servers to MP3 players round the house). So there may a be a few more outages next week when I have pondered the problem a bit more.

Enough of the ‘Geek Speak’! Kt came home today to see us, and to collect her new laptop that arrived yesterday. She has been using Linux on her desktop machine, but the new laptop is Windows based, so we had a mutual learning experience as we configured it for her. I was ‘home alone’ today, so Kt and I had some time together this evening over a stir-fry!

Health wise, I’m not sure if there aren’t some hints of GvHd – or perhaps that is wishful thinking, as it is only just a week since the infusion, and generally it takes at least 6 weeks for the incomers to multiply and get to work. However, maybe room for a cautious ‘onwards and upwards’

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