End of week 5

Hello Michelle F6eb802,

Please don’t hesitate to rant. Totally and utterly understandable This is really the most challenging part of the treatment when everything seems to peak. I really feel for you. 

3 more treatments to go and you’ll be on the ‘other side’. It sounds to me that you are in need of stronger pain relief. I don’t know what you have been prescribed but I remember resorting to the oromorph in that final week after having rejected it and it got me through those last few days. Do your team know how much you’re struggling? It sounds really tough for you right now. Different teams seem to have varying approaches to managing the skin burns but your pain sounds really challenging and please tell them on Monday how much pain you are in.

I am so sorry that you’re having such an awful time right now and hope that you get a plan to help you through the days ahead.

Big hug to you xx

I feel for you - the last few days are the worst. I found that spraying water from my peri bottle (any bottle that can squirt in the right direction will do) whilst I was weeing helped a bit as it dilutes the sting. You are nearly there and you’ve got this. I’m three weeks out the other side and have no pain - I feeL back to normal, so there is hope within your grasp xx

Hello Michelle F6eb802 

Please don't ever apologise for ranting on here - most of us have experienced what you are going through right now and vividly remember the pain and the sores.  And this is really the worst end of the treatment - in a couple of weeks things will hopefully improve quite dramatically, especially with the skin.

I would agree that it sounds as if you need stronger pain relief, and first thing tomorrow, please bring this up when you go to the hospital.  At the end and for three weeks afterwards I was on Oramorph syrup, plus slow release morphine tablets and had a plentiful supply of Polymem dressings with Flaminal Forte for my open sores.  I didn't do much during this time as I was too uncomfortable - I certainly couldn't sit and spent most of my days semi-prone with my rear end on an inflatable pregnancy ring.  But take heart, it does pass.  If you are given stronger opioid painkillers, just remember to take Laxido alongside to avoid constipation.

Honestly, the three days will pass quickly and then you can concentrate on recovery - this course of treatment is very tough but effective, please keep that in mind.

Gentle hug

Irene xx

PS  And I went to the loo in water for both urine and bowel movements - every time, it hurt just that little bit less.