So as not to bore you rigid, I will break up my journey with nsclc into what I hope is manageable chunks. But it could turn into War & Peace hahaha,
We start with the journey up to the commencement of treatment.
The story starts on 4 September 2009......
During that day a very strange thing started to happen, I began to sound more and more like Marge Simpson with a sore throat lol. Must be the onset of laryngitis I thought, which turned out to be naively optimistic on my part.
After 2 weeks, the "laryngitis" wasnt getting better any faster, in fact seemed to be worsening, could barely talk. Some might say that is a bonus as I have been known to chat the high heels off a donkey hahahaha. Off to the GP for a pitstop. Could be laryngitis, give it a little longer, heres some abx and come back in 2 weeks if its not better. Fast forward two weeks, no improvement whatsoever. Grrr it was fun for a while talking like this, but now people cant understand me in shops as I cant raise my voice much above a whisper and can barely get a sentence out all in one breath. What is going on?
Back to GP who suggests seeing an ENT doctor. Get the appointment fairly quickly and off I trot to the local hospital. What happened next is a bizarre thing which probably only a few have experienced, he puts a camera up my nose to look at my throat. While its not painful, its certainly "different". I inform the doctor that I hope that if I sneeze it doesnt whip my brains out like they used to do to Egyptian mummies hehehe !!!! After trying to produce a range of sounds as requested, and a singer I am not, I could warn shipping, the doctor informs me that my left vocal chord is paralysed. Cant you kick start it says I.
With a bemused expression, the doc goes through all the variables as to what might be the cause. As he goes through them, I mentally tick them off as not likely due to length of time etc. He then says that he thinks a CT scan would be a good idea, so that we can see what has happened to the left vocal chord to make it paralysed. The chord is actually very long, from your throat down your chest, loops around the heart and up your back. Any point along its path could be the cause. As I am getting ready to leave, I say "Im glad you didnt mention that nasty C word". The doc's features settle into an inscrutable mask, "Im not discounting it, its a possible". With that, I was fairly sure as it was the only thing left on my mental tick list which wasnt crossed out. He says that he will pass me onto a pulmonologist. Have got one of those already at the hospital as I have been treated for asthma and copd. 3 years without a problem.
Back home, I googled. Some say dont do it, but I say take care with what comes up. A paralysed vocal chord can be a sign of lung cancer along with several other symptoms, which I dont have. So its a possible then.
The CT scan comes and goes and back for my results appointment not with my original guy but with his colleague who is very nice. There are several people knocking about in the consulting room, didnt know they were going to be mobhanded for this. What do they think Im going to do lol?
He is so apologetic when he informs me that indeed I do have lung cancer and it is the lymph nodes in my chest which are compressing the vocal chord. I also have a small tumour in the top of left lung. So not going to stop talking with marge simpson anytime soon then!!
In fact due to my asking the original question of whether it could be cancer and my research, this is not as earth shattering as it may have been if it had come out of left field. I nod agreement and ask what happens next. Poor guy he seems perplexed. You seem to be taking this extraordinarily well he says. Well its a challenge just like any other that I have had in my life (and I have had a fair few). Its something to be fought and overcome and thats the end of it. I am not going to start wailing and beating my chest asking why me, the answer is why not me. this is the hand Ive been dealt with, so lets play to the best we can and hope to win.
With the diagnosis, life is now not my own. 5 appointments at 5 different hospitals in 2 weeks. Put your head in this, lay on that couch for an hour with dye floating around your body, into this machine, in that machine, blow in this on and on and on. Feel like a duracell bunny lolol.
Funniest moment was when I arrived at hospital for one of the last tests only to be told that I was not even in the right hospital for my appointment, let alone the right department. Ah well, couldnt blame chemo at that time, I hadnt even started treatment!!
Back again for results of those tests, it hadnt spread, so that was a relief but I had to have surgery to obtain a biopsy to establish what type of lung cancer, not just a straightforward outpatient procedure. Apparently the swollen lymph nodes were too close to my heart and other major arteries to contemplate an OP procedures and ditto with the tumour at the top of the lung. Again this was the reason they couldnt operate, treatment would be chemo and radiotherapy. Inoperable as opposed to terminal - a big distinction.
Now over 3 months since the first sign, quick this isnt, I was scheduled for the surgery on 10 December 2009. Had discussed with the chest surgeon my previous surgery on my spine. He advised that once a lung is deflated, which mine had been (unlucky me that it was on the same side) that he may well have to go in through the top of the chest in something called a Chamberlain procedure.
Fairly astonished to wake after surgery to find that an attempt had been made to go in through my side which hadnt been possible and they had then gone through the top. 2 chest drains instead of 1 and breathing like a bad asthma attack. Distinctly unimpressed that after the conversation we had had, they had even tried........... Let out the next day breathing not improved. Hoped that once I was home, things would get a lot better. How wrong I was. .......
Briefly, as your eyelids must be closing by this time, within a week I couldnt walk a few steps without my inhaler which I could have done with being on IV lol. On to antibiotics and steroids, by Christmas I had gone down with flu and by the New Year had gone down with shingles as well.
Concurrent treatment of chemo and radiotherapy due to commence on 4 January was postponed and changed. Sequential treatment would commence on 25 January provided that I was well enough by then.
Amazingly the day before the 25th, all signs of the chest infection had cleared - only taken 6 weeks and shouldnt have occurred at all, if they hadnt tried to go in the wrong way to get the sample.
Well if you are not bored witless by now and want to know how treatment went, tune in again real soon, I can assure you that things become very interesting including loony volunteer drivers, obnoxious nurses and mystery tours.
Heywood x
