Well thank god that's over for now at least!! wow, the fatigue is unreal. never thought it would wipe me out like that....
Still, I'm back home now having just had my first of 6 cycles for IVA chemotherapy at Chez Marsden. Day 2, 3 and 4 were awful and I feel nauseous just typing about it..
I had Ifosfamide, Vincristine and Actinomycin. That ifosfamide..ooooh you evil little drug you, but necessary nonetheless.. My arm is black and blue from nightly 'blood-thinning' stabs (sorrry, I meant jabs) had mesna to protect my bladder and kidneys, steroids, mannitol, paracetamol, that lovely saline flush and god knows what else. By the end of day 2 i felt like a walking pharmacy.
You know the one thing that really got me down? The food. And the fact that even if i felt sick, I had to eat something before I could take certain anti-sickness pills in order to feel less sick..was a vicious circle. I felt so nauseous smelling them warm up our lunch and dinner for a good hour or so before serving. The smells of casseroles and puddings wafted round the ward and it was an effort not to yak before it even got to me. In the morning I would order dinner for the evening but by the time it arrived, just couldn't eat it. can't believe how down I got about it. Things i'll do differently next time will take my own marmite because they forgot my portion every time. Will bring my own cans of coke, rose's lime cordial and sicilian lemonade and use their icecubes. I got so fed up of water and cups of tea, plus the drugs made the water taste bitter and choc and biscuits tasted like plastic! I'm going to stick to snacking on small meals during the day and order rolls, cheese n crackers...oh enough about food, i think you have a good idea i wasn't happy, but not at the staff, or the choice of food, just unhappy that i couldn't eat what I ordered because the drugs made me feel sick, and tired and the food taste wierd.
All the staff were tremendous and hardworking. From the ward clerk, to the nurses, hospitality staff, cleaners were all cheerful, they all seemed so tired but always happy to help. if I needed ice-cream to soothe my sore throat, or hot choc to help me to sleep, it was never really an effort for them to get it. They encouraged me to go out in the hospital garden for a little sun and much needed fresh air and I'm glad i took their advice and gave myself a little respite from it all for a few hours each arvo.
I'd get hooked up to the IV drip about 6 30pm for an hour's saline flush. Followed by steroid jab, and first big drug (ten min infusion) followed by another flush, blood-thinning injection, anti-sickness jab and then second big drug (just a jab really) and then my all-time-fave the 4 hour infusion of ifosfamide followed by 8 or 12 hour infusion of fluid. First night of first cycle I didn't really feel any side effects. maybe felt a little drowsy a few hours into the ifosfa but nothing bad. By night two I had chronic face-ache. They said it was a side effect from steroids taken early on coming into effect. Every bone in my face ached. I had to take a paracetamol and try to fall sleep with it. I just passed out in the end. By the next day the fatigue hit me like a brick and it was an effort to go to the loo, or reach for a drink! i stayed in that state until they unhooked me about 1.30pm and i was free until after dinner to move about.
What kept me sane in their was having this laptop to reach my nearest and dearest, via their WiFi. I spent a lot of time on youtube listening to music and catching up on iplayer. i couldn't read for toffee though. I bought loads of trashy mags and a books and didn't read any of them. After reading two words i could no longer concentrate and felt immediately tired! Weird.
Back home now though and I am starting to feel the effects of the drugs take shape. My hair will fall out. I can already feel this weird numbing sensation that makes my scalp feel detatched from the rest of my head. I run my fingers through my hair, but there's no sensation whatsoever. My skin is dry and papery all over, looking slightly darker. The first 3 morns after coming out I have battled with faitgue. i couldn't get out of bed til mid afternoon, and even that was a real effort. Would feel nauseous until meal times, then nap straight after them as anti-sick pills made me drowsy. I had the energy to sit in garden yesterday, and today to do a little weeding but I may have overdone it just doing that as I came indoors and had a pounding migraine for two hours. That'll teach me. I get so breathless, especially walking up and down the stairs. My hormones are all over the shop. I sat in my doctor's surgery earlier and just burst into tears. luckily they know me there and nursed me with a cuppa and a chat. My appetite is fine, but there are certain foods I have no taste for at the mo. chocolate tastes so strange. But I'm loving fresh colourful foods like carrots, red, green, yellow peppers cut in strips and dipped in a cheesy dip, strawberry jam on toast, twiglets, and i can't get enough lime cordial and lemonade with icycles....
Now that I've started my first cycle I now know what to expect. I also know which things I won't bother taking into hospital with me and the certain foody things that i will take to keep me going. I had some lovely visitors which totally made my stay there all the more bearable. Without them I would have probably cried everyday.
The free transport service to and from RMH was a godsend. It was a long haul through london back down south but a journey that would have killed me by train after all that treatment....Car was comfy and driver was friendly.
I have just realised that this particular blog is all over the place and in no particular order and maybe a bit confusing and inside out, kinda how I'm feeling right now!!! Roll on 26th April. 2nd cycle....royal wedding week....bring it on..xx
