29th September 2011
So much has happened in the past month that it has made me very slow to put pen to paper as then it just makes it all the more real. On the family front the boy has started a 4 year Science Degree, specifically DNA & Forensics science which includes Molecular Biology. I am finding it hard to get my head around this. If anyone had asked me what I thought he’d do I’d have said Art College, Graphic Design etc. as he is incredibly talented at art but no he says he’ll do that as a hobby! He has settled into college very well, has made friends easily, threw himself into freshers week and is really enjoying it. Some of his pals aren’t so lucky, some have ended up in Arts in UCD, didn’t get their first choice and this was the fall back option and have been wandering around wondering where they are supposed to be and missing lectures all over the place. One of his pals has yet to find the law lecture she is supposed to be attending, actually spent an hour in a lecture only to discover it was the wrong one! Another pal worked very hard to do a high points course and isn’t settling in at all. He knows no one in the college and couldn’t get to grips with what was going on during freshers week and has since spent one lecture sitting in his car wondering what all the hard work for the LC was about. Yes they went to a small school knew each other upside down but it just shows that the ones I’d have thought would have settled quickest haven’t and our boy has just grown so much in the past month it is wonderful to watch. I always felt he would blossom when college started and this seems to have been the case. He is in a small class, 32 now, as opposed to his pals being in lectures with 220+. I am looking on from the side wondering who will stick it out or who will drop out. It really has been a year of change.
On the 19th August I went to 3 miu’s 5 times a week and lost my mind! No literally, forgot an appointment with my dermatologist, started doing really weird stuff around the house and just went brain dead. It drove me around the bend and put me in bad humour. I was so determined to crack this that the following week my other half was on leave so we took off playing golf left, right and centre. There was something demonic in me which was proving I was as good if not better than him. We played straight through Mon – Thursday, and yes I physically collapsed on the Friday, however, my other half physically collapsed on the Thursday!!! It did take me longer to recover though. I just pushed and pushed myself that week, it did help that I did no driving and after golf would get into the car and fall fast asleep. I ended up doing 5 weeks of this dosage before I returned for blood tests and to see the oncologist.
Food is still a big problem, can’t really taste anything and have no desire to eat, yet strong smells, of which there are many, are making me feel ill. I am still very tired but have now discovered that the first week of a change in dosage is the worst, 2nd still pretty awful but it gets more bearable as it goes on so it was with confidence that I would be increasing to 6 miu’s when I met the oncologist last week.
So went through the normal routine, actually beginning to wonder what is normal now! Last Wednesday was one hell of a tough day.
Leave here, park eventually and head into him. Hate it, I cannot tell you how much I hate these visits, just believe me I really hate it. So very quickly taken into a room and the nurse comes in. She asks how I am I relate all that has happened since last visit. A dietician is mentioned; think I’m going to be referred just to see if they can suggest foods I can try to eat as it really is becoming a total pain. Bu now I’ve lost a significant amount of hair but, thankfully have twice as much as anyone else to start with, it is not really noticeable. I did however see my Dermatologist the previous week who pointed out my hair loss to me!!!
Blood results are back, now before I continue the one thing I’ve always been worried about is the effect this drug is having on my liver and I’m very aware that should there be any changes I could be in trouble. However, my liver and everything else is fine it’s my neutrophils that are the problem. They are supposed to be between 4-8 I’m just over 1. Hang on say all that again please! Neutrophils wtf are they??? When she said they were down I thought she’d say 3.5 but even I know, even though I haven’t a clue what she’s talking about, that slightly over 1 is waaaay down! It appears I have neutropenia, I had to look it up, but in plain English, neutrophils are what help your white blood cells to fight off infection and I’m now at high risk of picking up everything. I’m now in shock. If anyone in the house even thinks they might be sick they have to see a doctor who will, I think, put them on an antibiotic. Apparently by the time I realise I’m sick I will probably end up in hospital so this is to be taken very seriously. I’m still in shock. There is talk of putting me on a broad ranging antibiotic just in case, not happy about that I’ve enough stuff in my body these days. I’m to avoid crowds and it just goes on and on.
She leaves and I am struggling to even try and digest this. I did not see this one coming.
He then arrives in and the conversation starts again except now with a difference as he is unsure as to whether to leave me on the drug, increase the dosage as planned, or quite what to do. He points out that I started out taking 9 miu’s per week, this then increased to 15 miu’s and the next step is 30 miu’s. Now when he puts it like that!!! It is decided that I am to try the 6 miu’s but to keep in constant contact with them. I explain that there’s no point as I’ll be crap for the first week anyhow and it will be towards the end of the 2nd week that I’ll know if I’m reacting badly. He doesn’t think my body is going to be able to stand it, hmm my stubborn streak of I’ll bloody well show him, kicks in immediately, and although bloods are ordered again in 4 weeks he thinks I’ll be off it by then! If I manage to stand it, I will, but if the bloods show a reduction in neutrophils in 4 weeks then I’ll have to come off the drug, let the neutrophils improve themselves and go back on a reduced dosage.
My understanding is this is what can happen to chemo patients from dose 3 on. I know someone who had regular problems with her blinking neutrophils, used to get an injection into her stomach, have bloods repeated and it just meant next chemo cycle was delayed. However, interferon doesn’t work that way, once I stop taking the drug I’m back to square one starting with 3 miu’s 3/7 and building up again which is why they don’t want me to take a break.
Well the family weren’t over the moon with me when I returned. Hubbie said that it was ridiculous that by the time he knows he has a cold he is already infectious and anyway colds are a virus – my response was don’t shoot the messenger! The boy, already exhausted by freshers week decided that night he had a cold and didn’t come home but went straight to the nurse in college the following day. Luckily she wasn’t there as I know it was his body complaining that it wasn’t seeing enough of his bed!
So with all this playing on my mind I gave myself a 6miu injection last Sunday. I’m black and blue! I did it again on Monday, Tuesday and again last night. Final one this week is tonight. I’ve been waiting for the side effects. I am exhausted, but I did spend all last week walking around Killeen Castle at the Solheim Cup so probably no more exhausted that anyone else. My leg isn’t good, very dead actually and heavy – blame the walking. Stubborn streak again, I’ve booked us to go away for the weekend and am determined not to be sick.
So am I? To be honest I’ve been fine up to last night when I kept waking with the most awful pains in my joints. The paracetamol is right beside me but I am aware there is only so much I can take. I’m back to my stomach not being great first thing in the morning despite taking the Imodium and my hair is definitely coming out, by night time when it’s all flattened it looks very thin. I’m itchy, funny this is how my body was at the start, however, I am determined to enjoy my weekend. I feel if I could just get one proper night’s sleep I’d feel so much better. I take the injection late at night and have 1 litre of water drank by 11 the following morning. After last night’s sleep I’d 2 litres finished by 11 and am now on my 4th! My rule of thumb is to give myself the injection, sleep if I can then drink drink drink to flush it out of me as quickly as possible.
Time will tell if this works for me and if my stubborn streak allows me stay on is.
It is hard!