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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.
4th 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, 2nd week Gemcitabine only, 3rd 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 25th. 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…
