Had my second opinion in early January,following removal of 2 new cancerous nodes in my neck and on my collar bone.Worse prognosis than original - I was then considered to have 6 months left without treatment,and maybe 12 months plus 'if' I respond to futher chemotherapy.
Somewhat bizarrely,throughout January I began to feel better and at the end of the month was able to chew and eat properly for the first time in 5 months.We even escaped for a family holiday to Florida (uninsured of course), where my stamina was great and I put on weight - I was feeling well with a clear head and it was like I wasn't ill at all.
I came back to face 18 weeks of chemotherapy and it's not going well.
I'm now questioning whether I've made the right decision in opting for treatment.My original consultant advised me not to bother due to the effect it would have on my quality of life.I can now see what he means.My energy levels are poor,I'm back on a liquid diet (peg feed),my skin has erupted into a mass rash all over and my severe mouth ulcers have returned - these are so sore I'm now struggling to talk.The difference in a week pre to post first treatment is colossal and I don't think I expected that.
Whilst on holiday in early February,I detected 3 more small nodules in my neck/collar bone area and I don't think I need a biopsy to tell me what they are.
I want to give myself the most time I can with with my wife and 3 year-old, but the prospect of living like this (and I'm assuming it will only get worse), with no guarantees at the conclusion of the treatment, has put in doubt my original decision to go for treatment.
My chemo is on a 3 weekly cycle - 1 full day on cisplatin (3 and 1/3rd the strength of my doses last autumn),4 days at home with a bottle/tube feeding fluorouracil into my arm and then week 2 and 3, 1 hours worth of cetuximab before I start all over again.
Just wondered how others have coped.