NSCLC - a journey

From lung to gallbladder & liver

2011-05-22T05:08:23Z

May 2011. Officially confirmed, now have cancer in the gallbladder and liver. Unknown if mets from the lung or a new primary. Apparently it is practically unheard of for mets to go to the gallbladder especially as the lung tumour is stable still.

Surgically it can be removed but complicated by a lot of scarring to the lungs from treatment and infections so may not stand anaesthesia. Chemo may provide a compromise.

Lung function tests on Weds but I will need a lot of convincing to take this route as after chat with anaesthetist, I had all but pulled out of surgery. Too many risks post operatively.

Everything looking good so far

2010-07-28T16:10:53Z

Went for my first review appointment since the end of treatment. Chest xray & blood tests, too early for a CT scan as the lungs will still be inflammed from the RT, but so far everything is looking good yay!!!!

Off on my hollies on Friday in good heart and hoping that it continues to improve!

heywood x

NSCLC a journey Part II

2010-07-23T13:01:40Z

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NSCLC – a journey – Part II - Apologies this has turned into a missive as well - still straight facts are boring, this is an insight into the cancer world...... I hope your own journey is infinitely better than mine.......

Well if you are acquainted with how things went in Part I, I will recommence the journey with starting treatment.

Before then though, is another CT scan “as its been a while since you had one”. A while? Excuse me? End of October 09? Im thinking of changing my name to dartboard, have more holes in my appendages than I care to think about lol.

4^th Jan 2010, snow has been ever present in my area of the north west since 17 December. On the advice of my Mac nurse, I have been told to use hospital transport rather than drive myself as “there is no way of knowing how you will react to the chemo”. I also have a radiotherapy planning session, so a busy day.

A very cherubic looking male hospital volunteer driver turned up at my door. Little did I realise that below the angelic looking visage, a wannabe Schumacher lurked!!! We set off to pick up other patients around the snowy streets. The rule of thumb with hospital transport is that first on at pick up is first off at drop off – hahahaha not with this guy. Having picked up a full load, we got onto the motorway, reduced to one and a bit lanes. “Angel” as I shall call him, sets off like a bat out of hell at 70mph. I suppose that is fair enough but not something I would consider given the conditions. It was the persistent faffing around on his dashboard ie taking his hands of the wheel and steering with his knees which caught my attention rather alarmingly!!! I had this guy on a further 3 occasions, doing exactly the same thing and in the end had to say something to the hospital and refused to attend appointments again if he ever darkened my door again. This is patently dangerous driving and totally uncceptable. To add insult to injury, despite the appearance, this was one of the most surly people I have ever encountered. Definitely the wrong job for him!!!

Treatment commenced on 25 Jan 10. 1st week double chemo session, Carboplatin & Gemcitabine, 2^nd week Gemcitabine only, 3^rd week – reprieve yay. Repeat from week one for 4 cycles. Everyone’s response to chemo is different. I became the sleep queen, a gold medallist, interspersed with manic wide awake periods due to the intravenous steroids they give you before each chemo session. Eating was hilarious during this time, I could have ate wallpaper if it hadn’t been stuck on the walls hehehe. The dog didn’t settle too long in one place, nervously watching me when I was eyeing him up. I jest of course but you certainly get the munchies. Good job too really since the follow up radiotherapy which I have not long finished, completely took away my ability to eat, but I will get to that later.

For anyone reading this who uses hospital transport and has block booked transport for radiotherapy, then you need to be aware that things can go drastically wrong. As I said earlier, I was supposed to have concurrent chemo & radio but this was changed. As my radiotherapy was now a long way off, the RT dept at Christies decided to cancel ALL my transport bookings! Oh yes. Notwithstanding that I had to attend the hospital for chemo, tests, scans etc, the whole shebang disappeared off the system with the click of a mouse on the 25^th. So although Angel had collected me, I wasn’t sure who was supposed to be taking me home as my first chemo session was rather late in the afternoon, doubles are always long and Im aware that transport only work specific hours. Enquiries during the course of the session, which wasn’t going too well as the drip kept getting stuck, I was finally told that there was no transport arranged for me to take me home. Ridiculous how could that be. They brought me, they should be taking me home. I was told, I had got the hospital under my own steam. Rubbish was my response. Cut it short again, but they got me a taxi home at 9pm and this was how it was discovered that RT had block cancelled all my transport bookings. So beware and keep checking if you use hospital transport.

I shall stop droning on now and fast forward to my last cycle. My appts were always on a Monday and my last cycle was due to commence on Easter Monday. Eventually and very close to the Easter Bank Holiday, the powers that be decided that the ward wouldn’t open on that day, so my appt was moved to Tuesday.

The NHS is wonderful in lots of ways and completely ridiculous in others. I arrived on the Tuesday lunchtime to find a ward full of people having chemo and a waiting area bursting at the seams. Us patients were told that “due to the easter weekend, there were several hours delay before we could have chemo, as the company who makes up the chemo for the hospital hadn’t worked over the weekend”.

Everyone pulled faces but seemed to accept the situation. Unfortunately I can be a bit of a monkey occasionally and didn’t believe that excuse for one minute. If the company who makes up the chemo for the hospital weren’t working, what happened to all the inpatients who were having treatment? Were they sent home? Extremely unlikely. So how did they get their chemo treatment but the OP could not?

I sat for a couple of hours waiting and as this was session 1 of the cycle, I knew it would take a good couple of hours to infuse at least. I set off to find out how much longer I would wait. You may wonder why Im such an impatient cuss and should just accept that I had to wait. What I will say is that my husband has MS and as such cant be left for long periods of time. The hospital were very aware of this. With the delay in receiving treatment, coupled with how long it would take, I was running out of time.

It was agreed that I would come back the following day to have my chemo and on this occasion I took my husband with me, the one and only time he has been with me for treatment. I got him a wheelchair and we went up to the ward. The same scene and same excuse greeted us. Lucky me though, my chemo was already in the fridge from the previous day, so we were called through to commence proceedings. It was lunchtime and usually at Christies, a patient and anyone with them, can have lunch and a drink. Whilst I was having the drip inserted, my husband was waiting by my chemo chair. Lovely big squashy armchairs for patients whilst the chairs for companions are more reminiscent of a dining or school chair.

I settle myself into my chair and look around, those having treatment already were tucking into lunch and drinks, hubby was sitting there with nothing. They had simply waltzed past him and finished serving. Charming thought I. I asked a nurse who had been on the ward on several previous occasions when I was there and seemed quite nice. I think that day she had a personality transplant or a compassion bypass. Weve finished serving lunch was the terse response. Didn’t really matter, as we had provisions with us, but it was the principle that everyone else had something, but we had been left out.

Halfway through the session, hubby was getting very sore sitting on the school chair (he had got out of the wheelchair and we had put that to one side, where we had been told to put it, I might add). I offered him mine but he said no, so I got up to look around to see if there was anything that may be a bit more comfortable. Nurse Personality Bypass (NPB) asked what I was doing? I said I was looking for a different chair. There are no others was the response. Ok thought I, perhaps he could have a spell sitting in the wheelchair as it was certainly more comfy than the guest chairs. I turned round, no wheelchair. Where had it gone? Miss NPB then informed me she had moved it “as it was in the way”. Don’t think so was my response, told to put it there. The old health & safety was thrown into the arena to stop any further discussion on the subject. I will say at this point, she thought I was fussing for myself and not for hubby who when sitting down, looks as if there is nothing wrong with him, let alone a debilitating neurological illness.

Ignoring her for the rest of the session, even when she came to check the drip flow, I kept checking the time as I was due to have a Doppler scan on my leg which had swelled to elephantine proportions to make sure there wasn’t a clot. I knew why it had swollen (another story) and was confident that it wasn’t a clot. Session over, Ms Sarky NPB hoped I had a good journey home, I said I had a scan next. I asked about the wheelchair and she said she didn’t know when it would arrive and we would have to wait. She then waltzed away. Not having enough time to wait for a replacement wheelchair, as I knew the layout of the hospital at that time, we decided to walk to the dept I needed to get too not very far away. As we were leaving, I stopped at ward reception to collect my appt card. Hubby carried on to the lift using his then very obvious stick lol. Oh how beautiful, NPB now noticed that it wasn’t me who needed the wheelchair but hubby. Surprise, surprise, she dived into a side room and emerged with our very same wheelchair. Is that ours, I queried? No, Ive just taken that from another patient. Looking her straight in the eye, I told her quite firmly that I didn’t believe her for one instance (owing to certain marks on said wheelchair). Silly bint, fancy lying. Just hold your hands up and admit that you made an error and apologise. Good job I never saw her again, as it took my husband several days to get over sitting on a hard chair for 3+ hours due to her stupid attitude. With the lunch issue and then this pathetic excuse for a nurse, his one and only time on the chemo was a rousing slap in his face.

Last chemo went without a hitch and I was free for a couple of weeks. Another RT session had to be planned and RT then commenced on 24 May. CT scan after cycle 3 showed reduction and destruction of the tumour(s) – so far, so good. Burn the rest of it I say!!!

Experience of chemo. Ok I suppose, plenty of fun along the way, especially when the cannula slipped and I wound up with half of a very large bag of carboplatin into my soft tissue instead of a vein. Hand like a balloon and a nurse (experienced I might add) insisting that it was perfectly fine. I presume she had missed her appt at specsavers. No veins left to speak of and those I still have are more like steel tubes, but hey ho, so long as the alien is being obliterated I dont much care.

This has got lengthy again, so will stop here…. Will follow up with radiotherapy and the results show…

NSCLC a journey Part I

2010-07-18T08:58:51Z

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