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!

10 Responses to “Tuesday… and another visit to Guy’s – and feeling more upbeat!”

  1. Richard on 03 Oct 2006 at 3:52 pm #

    I know you have been distracted Peter but the wiring is quite untidy. Bit like a crow’s nest really.

    Your news sound a little like a Curate’s egg (what do they hatch into anyway?) so our crossing will not be undone, just held a little less tight.

    Speaking of which did you try the ol’ speckled hen or a bloody Mary?

    Richard

  2. Gillian on 03 Oct 2006 at 4:32 pm #

    perhaps a drop of the old grouse would be more appropriate (or was that last friday 🙂 )

    flying upwards

    Gillian

  3. Richard on 03 Oct 2006 at 7:05 pm #

    What’s that egg nog called, should be healthy, Advocet, is that how it is spelt?

    Richard (hic)

  4. Gillian on 03 Oct 2006 at 9:09 pm #

    Exocet………. nope…………. Advocate……….

    Snowball!!

    Time for a snooze zzzzzz

    Gillian

  5. Peter on 04 Oct 2006 at 8:09 am #

    A wonderful bird is the pelican,
    His mouth can hold more than his belly can,
    He can hold in his beak,
    Enough food for a week.
    I’m damned if I know how the hell he can

    (Cont page 94… thats enough bird – ed!)

  6. Richard on 04 Oct 2006 at 5:19 pm #

    Can we go back to chocolate biscuits then?

  7. Peter on 04 Oct 2006 at 5:23 pm #

    ! 😉

  8. Gillian on 04 Oct 2006 at 8:09 pm #

    did someone mention food???

    nice cocoa all round to accompany the choccie biccies

  9. Richard on 04 Oct 2006 at 8:56 pm #

    Onwards and outwards

  10. Gaynor Pritchard on 05 Oct 2006 at 6:16 pm #

    Hi Peter,
    After thinking what you must be going through at the moment it was good reading your blog and seeing such an upbeat and postive message. Pity about the diving but I’m sure you will still get back in the water as soon as it is allowed, just not too deep!!
    You must drive your wife mad with all of those wires and computer bits.
    Take care
    Thinking of you
    Gaynor

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