A Week In and I’m having a break

by Lizbeth, posted in Nets/carcinoid Syndrome, Uncategorized

Its been an eventful week.  My phototherapy machine was ever so kindly delivered by the courier.  Brought down from the photobiology department in Ninewells Hospital, Dundee.  We get it set up in the end bedroom.  Carefully I put the folder with the paperwork on the desk thats in the room.  make sure I have everything, creams, lip protection, goggles for my eyes.    The machine has an engraved plate on the front:  Hope 18.  To me this instantly makes me feel that the machine has some sort of entity and I have it in my head that the machine is of the female gender.  For me it makes its easier when I’m setting up, getting myself changed,  typing in the keypad – the time to warm myself in front of the lights.

My treatment gets done in quarters, I’m a piece of meat; getting carefully timed under the grill and turned over precisely as the timer says.    The bright lights shine up the whole room, when the beeper makes the familiar noise I safely take off the protective goggles.  My eyes take a few seconds to adjust to normality.

The first treatment over.   We have a quiet evening.  Next morning,  I wake up do my usual routine, my skin is a little drier than usual, but nothing to write home about.

Treatment two is fine.

Treatment three, approximately six hours after my treatment I feel my skin very tight.  There is a distinct redness to my skin.  Ouch.  Plenty of cream.  12 hours later and the redness has subsided.  24 Hours later a patch has developed on my throat.  And I can tell you its sore.  Both inside and out.  Its red and angry.  Evelyn my nurse came to do my peg care and my octreotide treatment injection.  Boy, was I glad to see her.  When she walked in, she first asked about my throat.  I told her how things were going.  She thought the best thing was to phone the photobiology unit at the hospital and ask what to do.  In the meantime she did my peg care, octreotide injection and checked over my throat.

I phoned the photobiology unit.  As ever the staff were fantastic.  Gently talked me through everything. They asked me to send photos.  Its been decided I have to stay off treatment till this Monday.  Take another photograph and send it to them, we will then decide when to restart the treatment and what dose.  The hospital staff have been in touch with me, my nurse and my GP – all on that morning – I have had my hydrocortisone replacement therapy medication increased and been prescribed hydrocortisone cream to apply on the affected area.   I feel very warm, like I’ve been cooked from the inside out – microwave fashion.   If i was cooked inside out, can you imagine my parathyroid glands if my skin on my throat looks and feels like this.

Fingers crossed it heals quickly and I can get back to my treatment soon.

 

 

My Sore Throat After Phototherapy

9 thoughts on “A Week In and I’m having a break”

    1. Hi there, thanks for the comment. How are you?
      Phototherapy. Its a light treatment to treat medical conditions. In particular skin conditions, especially. Its the ultraviolet part of the radiation produced by the sun that is used in phototherapy. In Particular Ultraviolet A (UVA) and Ultraviolet B (UVB) wavelengths. The choice of the type of phototherapy depends on what conditions is getting treated.
      Phototherapy treatment reduces inflammation of the skin and can help in various skin disorders. Although it helps to clear conditions this is usually always a temporary measure and not a cure. Treatments run a course of approximately 30 treatments over a timescale tailor-made to suit the individual.
      The amount of skin exposed to the light will depend on the condition, for most people all skin will be exposed with the exception of the eyes, which will be protected with goggles. The treatment will take place place in a specially designed cabinet with lights.
      There are some short term side effects:
      Redness
      Dry & Itchy Skin
      Folliculitis
      Rash
      Cold Sores
      Blisters
      Possible Long Term Side Effects:
      Premature Skin Ageing
      Skin Cancer
      For me I am getting phototherapy because I have symptoms of pellagra and I have photosensitivity. I am on an 8 week treatment. It is hoped it will thicken up my skin and make my skin slightly more tolerant to the outdoors and sunlight.

      Liked by 2 people

      Reply

    1. Thanks. Its amazing how well its improving over the weekend. Rest, time to myself and plenty of steroid cream over the particularly bad bids seems to be doing the trick. How are you? Good to hear from you x

      Liked by 1 person

      Reply

    1. Hi there, good to hear from you. Yes its very sore. Rest and plenty of cream are helping great guns. Big improvement this morning. Its still very sore and red but I can feel it healing and that can only be a good thing. How is life treating you? xx

      Like

      Reply

  4. (frowns) that looks like a nasty boo boo. I hope no one had your collar on too tightly. I think I’ll ask Mom to check my collar now just in case. I hope you feel better soon. Woof! Woof! Love, Maggie

    Liked by 1 person

    Reply

Leave a comment