Tuesday… after the dermatologists!

The posts are a bit like buses – none for ages then two come along at once!

Yesterday was a rather more prolonged visit that the bone density scan (although, like the bone scan, no blood samples!). There was a long wait, during which I swapped GvHd stories with another patient, and then in to see the consultant, Julia. We discussed the pros and cons again, including an article I had discovered in thee British Journal of Dermatology questioning the effectiveness of ECP. However as a one off paper, it was felt that it was inconclusive. So having weighed up the pros and cons, on the balance of probabilities, I have decided to start a course of treatment. The reasoning is that I have little to lose, but potentially much to gain. The GvHd is unlikely to resolve itself, and there is always the risk of additional flare ups, triggered by some infection, that will cause more damage. There is already a reduction in my mobility (mainly around my shoulders) which may be reversible if caught at this early stage. I was also mindful of the problems John had, and I also came across another web site baldy’s blog which describes in great detail the possible progression of GvHd.

Although the decision is probably the better one, it does mean that I will be starting treatment again – for up to twelve months, so in some ways it is putting my life on hold, again and psychologically I feel a little unhappy at the prospect, but if it resolves the GvHd the long term benefits will be worth it. On the plus side, I had a verucca I have been trying to get rid of for four years zapped with liquid nitrogen! (Too much information!)

Back on the tech front, I still have an occasional network problem, but I think it is actually being caused by one of the computers on the net. It has caused a couple of other problems lately, and yesterday, when I came home, it had ‘frozen’ and the network activity was high. Unplugging that machine from the network freed up the network, which points the finger at the computer. I have disconnected it from the network today while I am at work.

So new experiences beckon… Onwards and upwards!

5 Responses to “Tuesday… after the dermatologists!”

  1. Neil G on 21 May 2008 at 2:47 pm #

    Bummer about the 12months treatments, but given your attitude and resiliance I have no doubt you’ll take it in your stride and move on as you have to date.

    Good luck
    O&U
    Neil

  2. richard on 22 May 2008 at 7:22 am #

    I always thought that you were good at networking Peter 🙂

    Good luck

    Crossing up again.

    Richard

  3. Elspeth on 25 May 2008 at 12:55 am #

    Sorry to be late in commenting but was away – again – and I have yet to organise myself with wireless ability whilst away from home, but getting there! Anyway, it’s a d….. nuisance to have to pin yourself down again for 12months, but if the balance is on the side of benefit then go for it, I say. Best of, see you soon!! L’n’Hs, E

  4. Richard on 25 May 2008 at 7:38 am #

    PS did you find out if the Johnsons baby shampoo has to be used neat or diluted.
    My younger daughter has the ‘sleep in’ contacts that reshape the eye so that she doesn’t need to wear lenses during the day but she suffers from hay fever so it may be a good way of getting relief.

    Looks like cramp again being crossed for a year.

    Richard

  5. Peter on 25 May 2008 at 9:47 am #

    Hi All, yes, being tied down for 12 months is a bit of a pain – just need to keep my diary up to date!

    Probably less reason for tight crossing this time (although I hope it works) as it is an elective treatment – and, I hope, preventative! (But thank you for the thought! 🙂 )

    No more on the shampoo (I’d have thought diluted…) – as for the contacts, the hay feb=ver (if that is what it is) seems worse without them in than when I am wearing them!! The slutions I used to use for cleaning the fortnightly disposables makes a good eyebath though (expensive) and then there is good old Optrex.

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