Hi, I registered yesterday and have read some of the blog entries and having found value felt I should put my experience down in the blog in the hope that it helps someone.
So, had a 'well man' type checkup with my local health worker back in April 2012, St George's day to be precise. Was told I had high blood pressure so subsequently saw the doctor and put on some tablets.
In early June I noticed my neck was swelling up, however, I felt no different to how I'd felt for a few months, a bit tired at time but I do a lot of miles and long hours in my job. I went to the doctor a couple of days later to be checked over, blood pressure, blood test etc. I work from home sometimes and the next day I was sitting at home working when there was a knock on the door, from my desk I can see the front door and I remember thinking "hmm, that is strange, it's the doctor, that can;t be good". I'll skip the discussion, to this day it seemed a bit surreal, but the short version is "we believe you have CLL".
So, saw a consultant a few weeks later, had a biopsy and a scan and the diagnosis was confirmed and he decided not to wait, but to start treatment - I think there was a bias to do this even after our first meeting due to the lymph nodes in my neck.
I started FCR 12th July 2012 and am now in cycle 5 with cycle 6 starting next week.
1: Involve your partner, my wife went to my first two meetings with the consultant and it was good to get a second opinion of the discussion, plus he involved her.
2: With the FCR the initial results were surprising, my neck returned to it's normal self after two weeks. Plus as told by the consultant, I've not lost any extra hair so far. So, of the few colleagues and friends I've shared this with there were no startled looks, although I dont think some quite grasped it at first!
3: Telling people is difficult, but I suspect it is harder for them, as I already know, and have got over the initial alarm.
4: It has taught me to be more aware of my body and not ignore unexplained items, I'm probably lucky I went to the doctor when I did.
5: I scared myself a lot in the first cycle reading the internet and taking what I was reading almost literally. Discussion with the consultant eased a lot of this and a realisation in my mind that a lot of what was written was personal and no two people are the same. So, now I try to take a pragmatic view.
6: My wife raised an interesting observation. For a while now I'd been snoring more and more, and the family joke was that I bought DVDs because I needed three sittings to see a film. I suspect this was the hidden tip of the proverbial iceberg. Within my first two cycles I no longer snore (my wife gets to sleep through the night) and I see films end to end.
My hopes for the future:
Well, live long and prosper as Spock says. In reality I don't know what the future holds for me, however, I wish to live and enjoy my life as much as possible, I hope, at 56 I have a quite a few years left and we all will be talking for a long time.
That was a very brief overview and I missed out loads of detail, but I didnt want this any longer, I'll respond if anyone has any questions, but I'm not sure how timely I'll be.
Two apologies 1: the length, 2: my appearing to be flippant, trust me I'm not however I'm determined to be upbeat and positive as much as possible.