Hi Cheri,

My heart goes out to you and your husband, cancer shatters all that you know about your life and flips everything upsidown and inside out. The strange thing is that you and your husband will grow closer than you knew possible. Stephen and I were laying in bed last night looking back at our emotional state of desperation as though it was yesterday. We became closer because we lost all that we knew and rebuilt our life from scratch. There is a kind of nostalgia that comes from living through a profound existential experience. You too will feel that it is a rebirth of sort, you will make it through!

-Both of us needed a little medication to help with the panic attacks at first.

-My husband is an artist and managed to paint a watercolour the week before his surgery though he hadn't worked as of his diagnosis in September '13. He returned to painting the week after radiation but he struggles with energy levels still.

-Your husband must eat and sleep as much as he can pre surgery and you must do anything you can to gain your strength now. Eat, sleep, go for walks in new places, do everything you can to put yourselves first. Be firm and make sure your family respects your needs. You have all the right to think of your needs first, your health is number one.

-Make a list of all the things you will need help with while you are away and assign people to the tasks. Little things like frozen prepared meals such as pur�ed soups can come in handy once you are back home.

-You will want to meet your physio therapist as soon as you can(this is usually after surgery) and do the strengthening exercises to maintain range of motion.

- You will want to meet your speach pathologist ahead of the radiation to strengthen and maintain swallowing ability. The prescribed exercices must be done three times a day. My husband is 8 months post radiation and noticed that the scaring around his neck progressed and he must return to doing the swallowing exercices so that his throat closes completely when he eats.

-Ask yourself if you trust your medical team. If the answer is yes, trust them to do the heavy lifting but ask all the questions that will put your mind at rest. Try not to do too much internet reading, this was a really negative experience and futile in my case.

You have found the best spot in the world here! The connections you make are immediate and the knowledge is profound. I see now how positive the outlook can be and how critical it is to believe that you will make it. The level of care your husband will need will be outstanding and he will need you at his side after surgery. I moved into the hospital with him as soon as he was out of ICU. Being there 24/7 for Stephen was the most important thing I have ever done in my life.

(Side Note about Work options for you) Oct 24 '14 will be one year post op for my husband. I was not able to return to work until the next school year because of stress/shock and eventually exhaustion. I had the fortune of an employer who understood. My doctor put me on sick leave and my employer payed me all my accumulated sick pay which I never use so it was almost 6 months, after that the options are 'Employment Insurance' or long term disability if you have insurance and you qualify. Take the time you need people will understand and help you figure out the process.

Being present and open to your husband is the biggest gift you can give him. Focus on the now.

Keep reaching out, 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