Day 11 Missed a few days of the diary as I was looking and feeling really ill and quite frankly was too embarrassed to post any.
I realise now that was silly, as the point of this was to track my progress and the changes that are happening, so that not just me, but hopefully somebody else, can gain a better sense of how chemotherapy might effect them and the rates of the changes etc.
It's really hard to cope with when you don't know how it will go, All of the online diaries I have found are either text only or people have just given up when they start to look bad. I intend to continue now, Every day, no matter what. Because It would have brought me a lot of comfort to be able to look through a photo journal of somebody else's experience and actually SEE what happens instead of just reading all these crazy side effects on lists.
This also means that I am going to try and include more information with each picture.
Feeling quite good today, The low platelet count has started to make it's self known over the last few days, So feeling quite bruised and battered but it's not too bad. The last approximately 4 days I woke up in the morning and was soaked through with sweat. I think this is my body flushing the toxins from the chemo drugs out. it's not pleasant waking up wet every morning but it's not unbearable either. I get changed and dried as soon as I get up and then don't get too cold. The first few mornings that it happened I had really bad rigours and because of the acheyness anyway, the rigours hurt like mad, I'd be stuck like that for a good half an hour. Too cold to get up but too wet to warm up. but I don't get those now because I'm too quick to let it start! The second I'm awake I jump up grab a hot towel, get dried and changed and that's enough to avoid the painful rigours (As long as I'm quick enough!)
The other thing that has started to make itself known lately is the numbness, tinnitus and balance issues. These are quite troublesome, They are a little scary and they do affect how you plan your day. It comes in waves. There will be moments when it feels as though I'm falling to the side, when I can see, I'm sat perfectly still. It's very disorientating. The tinnutus isn't there most of the time but when it happens it can be really loud and it's usually different in each ear which makes it more dissorientating. There is also the vision problems, These, for me are the most frightening, as lets face it, nobody wants to go blind! Now, it's commonly documented that blindness from chemotherapy is rare BUT it's not so commonly known that if your eyes are already damaged (Mine are) you are at a much higher risk of permanant sight damage. This is something I need to discuss with my Doctor and see if he can give me any reassurance or information on how things may progress. It comes in waves like with most of the other side effects, My vision will go from normal (Can read the smaller text on a newspaper for a short time but it makes me a bit dizzy) to so bad I can't even see the largest print on a newspaper (yes, the headlines!) Then it will go back to normal again, (it's actually doing it a little now so need to stop for a coupleof minutes and just close my eyes) ........................ It makes you feel sick and dizzy when you can't even focus on somebodies face! haha ahh nevermind, It's back to normal(ish) now.
Last but not least, the numbness, This also ebs and flows along with the other side effects, getting really strong and frightening at times and going to almost unnoticible at other times. So far the effected parts are as follows: Left arm (where all the infusions have been going in) is partly numb along the top of my forearm, middle finger from middle knuckle to tip is quite numb, (the tip of my middle finger is completely numb at the moment but that could change in a minute or a day or never? who knows!) that's the problem with this, the hardest is not knowing whether its going to get better, worse, go away or stay forever. and all those scenarios are possible.
I think I've written enough for now or this is going to be too long, I will add anything That I have forgotten to include later, or more likely, tomorrow in the next diary entry.
The best thing, is right now, I'm happy, I'm not in pain anymore and I still have another full week (apart from 1 infuson) before the intensive chemotherapy starts up again, To rest, to laugh and to enjoy xxx
