On Feb 6th 2008 I was diagnosed with NPC. I think it was stage 3. It presented as a lump on the left side of my neck. I had 36 radiotherapy sessions and three lots of cisplatin and 5FU (4FU?). I have never smoked in my life and never worked in a smoky environment. I was quite a good deal over seventeen stone although still playing sport in my late 50s, and I was surprised when my oncologist said that the weight would be a good thing. I lost 4 stone throughout the course of my treatment. It was successful but two years or so later a second lump developed in my neck and they found malignant lymph nodes in both sides. I had a bilateral neck dissection. I was a teacher and had gone back to work after the first episode but I decided to call it a day. Regular as clockwork two and a half years later a routine scan revealed that my cancer has returned to the primary site. My oncologist at first was very pessimistic and palliative care seemed to be the only option. It was decided to repeat the Chemo, adding cetuximab to the mix, and the radiotherapy. I had all my treatment, except forv the surgery at the Christie. I was given a prognosis of 30% 5 year survival. In my mind I likened that to a revolver with ten chambers, only 3 of which were empty. Another a couple of years later a routine scan revealed more lymph nodes and I had surgery to remove them. One was very close to my right clavicle. I had a CT scan after an infection in my face list November and they saw something on my lung so I had PET scan. It revealed a mass in my lung and several infected nodes in my neck. I was given a terminal diagnosis two weeks last Thursday.
The worst aspect of this whole roller coaster ride has been the gradual increase of problems in the head and neck area and what it has done to my life and those of my family and friends. I could be posting all night if I went into detail, but here is a brief synopsis. There have been 4 major events so I'll number them thus to give some idea of the time scale.
1. Saliva glands shot and dry mouth. Build up of thick mucous in my nose.
2. Removal of part of my jugular vein and hardening of tissue around the neck area, causing restriction in movement of head and neck. Gradual full ptosis of the left eye. Trouble swallowing which turned out to be my swallow deteriorating as well as my speech. Frequent episodes of stridor. Moved on to soft foods. A nutribullet was a godsend. Restaurants a thing of the past.
3. Lost voice altogether more or less and progressed to full nil by mouth, with an enteral feeding tube overnight. Had tracheostomy fitted. Hardly any voice at all. Partially deaf. Very hard tissue and difficult drainage in sides of the face. Teeth wrecked.
4. A series of infections after severe facial swelling which led to two bouts of encephalitis. I was very close to death twice. My wife signed do not resuscitate forms on both occasions.
I have a six week window to see how the mass in my lung grows but then it is probably more radio and Chemo to slow things down. Ironically I'm pretty fit and healthy at the moment. The sword of Damacles has dangled for ten years and it is almost liberating to know where I am now. I am still as ever doing the cooking even though I can't eat it myself. I do have beer down my tube (not supposed to) so that I can become involved in interacting with friends, with whom I am blessed. My get together on the 6th of Feb to celebrate 10 years may feel a little like a damp squib, althoughI try not to infkuct my problems on my family and friends. I am good at developing strategies for coping. I use a white board to communicate and it is quite powerful to show people who may otherwise have thought otherwise that I am still sharp.
The biggest irony of all, and the one that causes me the most regret, is that being of mixed parentage and a linguist by trade I am pretty fluent in four languages but can speak none of them.
I am able to keep myself busy and determined to prove them wrong again if I possibly can and to keep my family's anguish at witnessing this catastrophic decline to the minimum.
My motto is live forever, or die trying. Isn't it everyone's?
