Hi again Dizz_zzey,

Yes I’m sorry we have to meet in such difficult circumstances but thank goodness for this forum as it definitely helps a ton to know there are so many others in the same boat and I wish I had found it sooner! If you don’t mind me asking what is your job? If you tell your surgeon and team that your hands are your life then they should definitely give you the option of having the graft taken from one of your thighs. As far as I understood it, they normally only do the thigh as a back up, meaning they will first try from your forearm and then if this doesn’t work they’ll take from the thigh unfortunately leaving you with two wounds.

From what I can tell, quite a few people have struggled with the wound sight on the forearm, some even saying that the graft there is worse than the wounds in the mouth in terms of healing. I would be interested to hear from anyone who has had the forearm graft and if possible see what their scar looks like??

Like I mentioned above, I have had absolutely no issues with my thigh whatsoever and have even come to like the scar on my thigh, i wanted to attach a photo of it here but don’t have a url code for the photo so if you are interested to see it I will try and send it in a private message. it is definitely larger than a forearm scar but I’m not really one to show my legs much and even if I do wear shorts it doesn’t bother me, it’s a wavy line running all the way down the front of my thigh with a dot where the drain was above my knee, I’m a creative spirit and love that it’s not a straight line

I was never given the option for the immunotherapy so I’d be interested how that goes? I was in theatre having the surgery which took 9.5 hours within 3 days of my diagnosis so it all happened extremely quickly for me and i didn’t have a moment to think about it as was in shock. One bit of advice I would give you is don’t give the morphine button back until you are completely certain you don’t need it any more, they want you to come off it ASAP so will be pushing you for that BUT I found I gave it back too quickly and really struggled for a couple of days afterwards and the nurses refused (mostly weren’t allowed) to give it back.

I have heard nothing but good stories about the Royal Marsden (sp.?) I’m so happy you went for a second opinion as your first treatment plan sounded very harsh and a bit over the top. Good Luck and keep up the good spirits as that certainly works wonders when it comes to healing. I too have a wonderful support network of friends and family and whilst they won’t always be able to understand our struggles, being able to have a giggle and make light of the shitty situation does keep you going. My boyfriend is fantastic at gently teasing me about my wonky voice or how long it takes me to eat three mouthfuls, for me this helps and even if momentarily makes me feel normal again.