7 July - We meet our Macmillan Nurse

Another night with not much sleep. But feeling reasonably well and alert in the morning. Spent a couple of hours playing with my radio "toys" and ordered a new Android Smartphone so I can get rid of the ghastly Windows Mobile that prevented me from accessing email when I was in hospital.

After lunch had a meeting with the local Macmillan Nurse. This was extremely useful. For the first time, someone sat down with us who had the time to answer all of our questions. She was also able to tell us of the various other support services available, which include Hospice at Home and respite care to relieve Olga should I become so ill that she daren't leave me. All free, either through the NHS or charitable organizations. I was really quite impressed.

I can apply for a disabled parking card that will allow anyone who takes me somewhere by car to park in reserved for disabled spaces. Apparently I am then also entitled to a free bus pass! I am even entitled to claim a disability benefit - though I gained another unwelcome insight into the way the professionals view my case when I was told that payment would be expedited under a special rule for patients that are not expected to live for six months!

The nurse gave us some more information about the actual treatment. I had read that radiotherapy makes you feel tired, but she said that "it will make you feel tired as never before." Many people just crawl into bed after treatment. So it is likely that the next couple of weeks before treatment begins will be the best couple of weeks I will have for a while, at least.

What seems most important to me now is to make the most of these few days when I feel in a state of dreamlike well-being, to enjoy them as much as possible.


  1. Glad you got some time with your radio toys. This is my opportunity to tell you how much I enjoy your radio-related posts. They have been very helpful, and I am thankful to learn from you.

    Tom N7ROK

  2. Julian,

    A friend recently sent me the following poem. I hope it gives you a smile and some energy.

    Have a ____ Day
    by Lou Lipsitz

    Have a nice day. Have a memorable day.
    Have (however unlikely) a life-changing day.
    Have a day of soaking rain and lightning.
    Have a confused day thinking about fate.

    Have a day of wholes.
    Have a day of poorly marked,
    unrecognizable wholes you
    cannot fathom.
    Have a ferocious day, a bleak
    unbearable day. Have a
    riotously unproductive day;
    a grim jaw-clenched, Clint Eastwood vengeful
    law enforcement day.
    Have a day of raging, hair-yanking
    jealousy and meanness. Have a day
    of almost grasping
    how whole you are; a finely tuned,
    empty day.

    Have a nice day of walking and circling;
    a day of stalking and hunting,
    of planting strange seeds and wandering in the woods.
    Have a day of endearing nonsense,
    of hopelessly combing your hair,
    a day of yielding, of swallowing
    hard, breathing more deeply,
    a day of fondness for beetles
    and macabre spectacles, or irreverence
    about anything you want, of just
    sitting and wondering.
    Have a day of wondering if it's
    going to help, or if it just doesn't matter;
    a day of dark winds
    and torrents flowing though the valley,
    of diving into cool water
    and gasping for breath,
    a day of sudden hunger for communion.

    Have a day where the crusts you each
    were given are lost and you stumble
    with your fellows
    searching endlessly together.

    "Have a ____ Day" by Lou Lipsitz, from If This World Falls Apart.