Treatment complete!

Hi Jen,

So happy to hear that you’ve finished treatment! It’s such a milestone and it must have felt good to ring that bell. Lovely photo. Congratulations on getting through what was a really tough and complicated time for you.

I know that this is a hard bit too, but rest up now and make full use of all of those lotions and potions while you heal and recover. It will be a relief not to do the daily trips. 

Big hug to you xx

Thank you, Peb :) hugs back to you xx

That’s great news! So happy for you. I rang the bell just over 6 months ago and all is well. I hope the same for you. Now is the time to pick up the pieces and fully enjoy life again.

Happyflower

Hello Jen

You have been through such a tough time and now the treatment is finished......well done!

Lots of rest and drawing to keep mind and soul in a happy place sounds like the perfect tonic.

Sending love and hugs.

Ally xxx

Thanks guys... I had attached a photo, but it's been removed by the moderators as not allowed to add photos with other people in, which I completely understand. 

Very ouch today  skin is so fragile! 

Jenna xx

Hello Jenna

You are at the very sharp end of treatment now and it may well get a little worse before it gets better.  But then, for many, literally overnight the burns start to heal, new skin forms and you will honestly look back and think did I really go through that!  Isn't a huge relief not having to visit the hospital every day and just being at home and getting your strength back.  Just be very kind to yourself and don't try anything that exerts you too much, the treatment takes such a toll on you and the body is working very hard healing itself.

Sending a gentle healing hug

Irene xx

Thanks Irene :) really hope that healing day arrives sooner rather than later! But yes, glad to be at home at this point. Xx

Hi Jen

So pleased for you that your treatment is complete and you can start to put your life back together again!

Sounds like you had lots of support through your treatment, which must have been great.

I wish you all the best for a speedy recovery. Please let us know how that goes as some of us still have all the joys of treatment to come. Any tips would be gratefully received with regards to your non-negotiables during treatment and since.

Interested to read that you have started drawing again, can you sit for any length of time (just curious!) or are you lying down most of the time?

Los of love and best wishes to yo

Jo xx

Hey... thanks Jo x sitting is a bit challenging at times! Have to adjust a lot to be comfortable and tend to sit on my hips or lay. The dressings help tho and I go nekkid at night with a big pad on my bed to lay on! 

Loose clothing is a must... although with the dressings now, I have to use big, comfy pants to hold them in place lol ...I've also found that using a peri bottle during or directly after using the loo helps take the edge off, but my MUST is lidocaine mixed with cooling gel (instillagel). I honestly couldn't cope without it at this point. Also, if it becomes difficult holding your bladder for treatment or you start to get the ouch when peeing, I recommend cystitis relief sachets - I would dissolve one in water to drink to achieve the full bladder so that it wouldn't be too harsh.

I've got into a routine of applying the lidocaine as soon as I get up each morning, in preparation for needing a BM. I've still tended to need to go in the mornings, although often more than once, but it's more difficult to prepare if your BMs are more irregular. 

Also, get yourself some VERY mild shower wash to clean yourself... and be really gentle, with luke warm water. I have Aquaphore baby cleansing wash and it doesn't irritate or sting at all. 

Hope that helps! 

Jenna xx

Thanks Jenna, that's very useful. Is the lidocaine in a cream that you mix with the instillagel? My nurse hasn't really talked to me much about pain relief yet and their cream of choice is aqueous cream. I was hoping to use this Strata XRT get but it was not approved.

Aqueous cream seems very low level compared to some hospitals and I'm a bit worried that it will not be enough to stop the skin breaking down quickly.

I'm already so worried about the pain....

The tip about the cystitis relief sounds great as I used to get cystitis a lot!

Gosh, I bet you're relieved that it's all over and you can concentrate on healing now!

Jo x