My heart goes out to you, my husband had a growth that pushed his back tooth out before we saw a dentist. Then we were prescribed antibiotics so two months pased before we landed in an Ear Nose and Throat clinic.

We waited a month and a week after his CT scan for his surgery.( In Canada the time varies between provinces but the priority is the skill and experience of your surgeon). My husband's surgeon(+team) I am convinced saved his life in combination with the radiologist and her team. If ever you need to relay information to your team of specialists but you find you can't get through. Simply tell the administration that you need to speak to a member of your medical team. I only used this when I felt it was an emergency. Also we had a case worker assigned to us who guided us and answered all of our questions or worries along the way.

I know that at the start while you are waiting, you feel alone and confused and in a way if you have no relitives who work in the medical field you are left with too many questions and life starts to spin.
-My advice is to stay focused on what you can do now. Family and friends will need to help with the small stuff like cooking, cleaning, paying bills, taking care of hour daughter. You will need the help, if you are not ready to take it now make a list of names, tasks and numbers.
-I know it is scary but have faith in the medical team. They will tell you straight out what they can do and test your husband's health so that there are no unpredictables. I wish I could have had the hope I have now five months ago. I was terrifyed and unconsolable and exhausted myself.
-Your husband will need someone to stay with him overnight. Make plans to be there with him, especially in the first week of his recovery. He will be weak and need your help for everything I personally didn't have time to wash myself or scatch my nose for a while. You will need to keep the room well humidified so that he can clear his lungs from the thick mucus. I know it sounds horrible but you can do this, and you will be forever closer after fighting this battle together.
- Do not focus on statistics, they do not take into account who has quit smoking or the quality of your doctors. And besides I learnt the hard way, 'my husband has beat this cancer and put it in its place and I have no right in being a sceptic'! I owe it to us to celebrate our life, our victory, no regrets only looking forward. I must admit, I burnt myself out but I am slowly gaining some ground and am ever grateful to have been there through it all.

If you have any questions at all, and no question is unimportant, let me know.

Sophie


husband 61@diagnosis painter
6/9/13 Exophylic invasive SCC IV(ext.gingivobuccal) 3cm+ mandibular/lytic/erosion, jugular/node9mmshort-axis
17/9/13 Dx(moderately aggressive)
24/10/13 left madiblectomy, mod radical neck disct, leg flap, NGtube
2/01/14 (30 tx)rads 60gy
N2b (2nodes under jaw) (rem. in tiny nerves) (rem. 30 nodes)
Clear margin, close 2mm inner cheek
15/05/14 cellulitis
3/12/14 Chest CT Clear
27/02/15 cellulitis
8/6/15 cellulitis
10/6/15 Osteomyelitis