Forum Discussion

Mich_x's avatar
Mich_x
Member
12 years ago

UPDATE ON HYPERBARIC ETC.

Hey my luvlies

Just thought I would give you an update of where I am with my sleeping beauty treatment.

For those that don't know I have something diagnosed as "post irradiation breast morphea".  I need for you girls to realise that this is an extremely extremely rare side effect of radiotherapy.  There has only ever been 54 cases reported in the whole wide world over time so highly unlikely that any of you girls would need to worry about this.  For some reason I am just the lucky one NOT!!!!!!!!

I am currently up to number 14 of my 35 hyperbaric sessions (my sleeping beauty chamber).  This is an oxygen chamber that is used for people with the bends initially and now they are finding it is very helpful in assisting healing of many illnesses/body tissue issues.  I drive to an from the chamber so 45 mins there and 45 mins home.  I am in the chamber 5 days a week for 2 hours a day.  I am currently in the Mono chamber which is by myself.  I am unable to take anything in with me except a water bottle they supply.  I have to wear a cotton gown and cotton socks and paper panties all supplied.  That is all that I can take in with me.  Oh except the bracelet they put on my wrist for them to be able to monitor me and an oxygen mask that I have to put on after an hour in the chamber for 5 mins.  All of these things get kept in my lil drawer and I use these every day.  Each person has their own lil stash.  I can watch morning TV or watch DVD's. (yuk yuk yuk as I am not in to either of these things)  That is the extent of my 2 hours.  No I phones, I pads, crossword books, no music, nothing.  

Anyway I got my eyes tested on Friday (need to be regularly checked along with my ears which are holding up fine as long as they take me down slow and bring me up slow (so no grommets needed as of yet).  Anyway this obvious misinformed doc did my eye test without my glasses on which I use for driving.  Little did I know he was misinformed.  He said my test came out as 6 and the minimum you need for driving is 12 so I couldn't drive anymore.  I thought what the!!!!! I have to drive home.  I was devastated.  He was taking away my total independence in those few words.  If you girls stop and think about it.  How would you get to your next appt, coffee with the girls, babysit the grandees, do your shopping etc etc.  

Anyway I came home and thought about it and rang them as I was confused.  The doc had got it wrong.  I can drive till Monday when they will retest my eyes WITH GLASSESS ON!!!

I am so praying my eyes will be okay for now.  The 100% oxygen I am receiving can affect my eyesight but I honestly did not expect it so soon.

I will keep you posted on this.  It does make you stop and think.  Look in your diary and see what medicial and social appts you have coming up and just think how are you going to get to them if you can't drive.  It blew me away.  This still may happen to me so it is scary.

There will definitely be a life for me after cancer but not quite sure when yet so I just keep taking it day by day, hour by hour.  I use the strength and love of my beautiful pink sisters to help me get through and I am doin it!!!!  Have to be a huge group of elephants run me over to keep me down hey girls.

Ask yourself this question:
"Will this matter a year from now?"
Richard Carlson, writing in Don't Sweat the Small Stuff

Luv n hugs and heaps of wellness thoughts coming your way, Mich xoxoxoxo 

23 Replies

Show More
  • Mich_x's avatar
    Mich_x
    Member
    12 years ago

    Hey Jeanine

    Thank you for your lovely comments and you are right you never know what is around the corner and what they are gunna throw at us next so we have to be ready somehow to bounce back.......Yes definitely something about me.  I think I have a sign on my back that says "hit me with it baby and see whether I bounce back again".  I keep on getting up so far.

    As far as any changes.  There isn't any to report but they say it is only early days and that I should start to notice changes if there is going to be any changes.  (I know the Radiotherapy oncologist didn't think so but the PS who actually diagnosed the problem believes it will help,) They believe between the 20 - 30 sessions before there should be any changes if there is going to be.

    I have had a phone call just this afternoon to say there has been an emergency and that for tomorrow only (at this stage) I will be going in to the multi chamber with the space helmet on my head and attached around my neck and you sit up for the couple of hours.  You can read or do crosswords or something like that in this one.  So I will have something different to report on after tomorrow. 

    Lots of love always, Jeannine and I hope you are travelling well xoxo

  • JeanineG's avatar
    JeanineG
    Member
    12 years ago
    Hi mich Thanks for the update. I have been thinking about you and hoping it is going well. You sound very positive but it seems there's always another surprise around the corner - it must be something about you :) I really hope your eyes don't let you down and that the treatment works. Have you had positive results so far in terms of the main problem? Anyway, keep on smiling and sending you hugs, Xxx Jeanine
  • JeanineG's avatar
    JeanineG
    Member
    12 years ago
    Hi mich Thanks for the update. I have been thinking about you and hoping it is going well. You sound very positive but it seems there's always another surprise around the corner - it must be something about you :) I really hope your eyes don't let you down and that the treatment works. Have you had positive results so far in terms of the main problem? Anyway, keep on smiling and sending you hugs, Xxx Jeanine