I went in on Tuesday at 9 am and had my trial drug which is a monoclonal antibody, in simple terms this drug doesn't kill the tumour it changes how my body works and gets my own body to target the tumour. This given other chemotherapy is meant to work great. It better!! It took 6 hours to go in as has to be quite slow as your body can fight it as are foreign anti bodies. I avoided any major reaction and just needed a half hour break as my throat went funny for a bit.
After that I was admitted to the ward and got a nice little bed in the corner by the window and then my chemo plus litres of fluids and kidney protecting infusions could start, these took 42 hours to all infuse so I was booked up to 3 pumps and took them everywhere I went! As you can imagine with all that fluids trips to the loo with my pumps and wires were very frequent!!
I sat watching my chemo go in and then waiting to puke..... And waited and waited but it never happened? It can be a delayed reaction but I'm now 60 hours post starting it? ). Every time dinner came I chose the biggest option. No salads for me! Just in case it was the last thing that went down! So had pork roasts, crumble and ice cream, chicken curry, gammon and chips and it was all very yummy.
I purposely didn't take any snacks in as assumed they wouldn't be wanted but after the first night I sent out for supplies and managed some chocolate hob jobs, haribo and diet coke! The staff were amazing and there was a 24 hour 'bar' menu of hot and cold food at all times and they were always offering you food and drink. It really was like a nice little hotel stay! ( now I'm starting to sound crazy! )
I had 12 hourly bloods to keep an eye on my kidney function and they were always normal. I even ended up with a cannula ( for a half hour infusion, then It came out ) and even that was painless and the nurse was very sweet and used a tiny one in the fat bit of my hand then whipped it out.
I had a noisy neighbour ( snorer! Well it was way worse that a snore! ) she did have tonsil cancer and had the worst radiation burns to her neck that I couldn't complain! But the first night I may have slept 3 hours on and off as did the rest of the ward!! A very sweet night nurse brought me a pair of her industrial strength ear plugs from home the next night and I didn't hear a thing!
I really can't fault any of the staff at Christies, they will all go above and beyond their job description to make sure your ok. If I got visitors they always got offered drinks, if I was awake in the night they brought me toast, when Madeline visited hey took her off for chocolate then let us have picnic in a quiet room etc. when you asked for something you didn't get a 'huff' and "il do it in a minute" you got an " of course no problem!".
I would like to think I'm that kind of nurse, ( well intact I'm not being big headed I know I am! ). But I'd say although there are lots of amazing nurses out there they do seem to be interspersed with the ones that are maybe not quite so happy at their job, that although very capable at their jobs forget to put the patient at the centre and talk to them! Ask how they are,communicate and smile, it really will make you a better nurse!
Not sure what else to cover in my first chemo post! Didn't make as many ' things' as thought I would. A cat a monkey and 2 minion hats? I was too busy talking!! Time flew while I was there!!
So I'm back home and do feel a little poisoned, a little hung over but certainly not too bad, long may in continue. The cytarabine ( chemo ) is meant to blanket bomb all my cells so my blood cells will be affected this time and drop significantly. So I'm be much more susceptible to infections and probably need blood and platelet transfusions and my own body won't quite be upto it. Also I am still on a steroid high but I am weaning off those over the next week so by next week il be curled up in bed like a field mouse and be on dry crackers!
Back in hospital at least weekly for blood tests, next week for my antibody treatment then in 17 days il go back and do cycle 2 ( the above again ) and then I will have my stem cells harvested and a ct scan to check Mr Tumour has shrunk
Oooooo have to mention Mr Tumour ( as I'm sadly very proud of his size and have to share it! ). I don't generally have any questions for my medical team as have my own fountain of knowledge in husband / super Rick form. But whenever I've had a scan I always want a look at my scan pictures. This time I saw my latest PET scan and although I knew my tumour was back and big as could feel it trying to poke out my shoulder blades as well as my chest was nice to have it confirmed! On the pet scan ( one with all the black bits ) it looks quite square but when they showed me the cross sectional images could see it was very deep and long. It fills the space where my left top lung lobe should be ( from heart up is just tumour ) and my lung has just given up and deflated out of the way. The pic attached shows it a bit, the black circle on left of pic is my normal ( right) lung filled with air and the thing that looks on fire on the right is where my left lung should be but it's filled with tumour.
Right I promise I'm going now!! It's turned into a longer post than I anticipated but that won't surprise you as I struggle to shut tho once I start!
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