Evening all,
I am sitting here with the twins on the bed scoffing malted milks and my eldest son helping me watch them. He is a proper little diamond is Older Master T, even though sometimes he can be a pain, he unfailingly provides help when I ask these days and I am very grateful to him. I am anxious that he should not become a 'young carer' but am realistic to know that at some point this is going to be increasingly more likely.
A and I have had a row, he has gone off on his bike, we argued over when he gets time out on his bike. The bike is his escape and provides him the head space he needs to cope with what is going on. But he feels that he cannot get out leaving me with the two boys on my own. Mostly I cannot and he is right but there are times when it is easier for me to cope alone than be cooped up with A needing time out.
I have been meaning to write all about chemo for a while now so will tackle it now. It is a big subject and I guess a mystery to most people as to what happens. It certainly was for me. It seems an age ago now that I first walked into that ward with the pink chairs all arranged in circles with the many beeping drip stands. Where they weighed and measured me and worked out my particular levels of drug.
I feel after 6 sessions I am now able to comment on it more authoritatively well at least mine. Each person has different drugs, there are lots of different chemotherapy drugs, it depends on your cancer, where it is, whether you have secondary cancers and your body make up as to what drugs you receive. In my particular case I have bladder cancer and a secondary bone cancer so that means the best 'gold standard' drugs for me are Gemcitibine and Cisplatin. They started me on the best in the hope that they can really go to town on this cancer, it gives me the best chance of ever gaining remission. Cisplatin though unfortunately is well known to cause bad nausea which really made me poorly for the first two sessions. Thankfully now with a raft of anti sickness drugs this is under control, it was the most debilitating side effect so I am pleased about this.
When I arrive for each session I find it hard having the needle sited for my chemo, it hurts and rarely do they get it first time, it also bruises my veins so often they are sore for weeks after. I also have my blood taken to check that I am well enough to receive the chemo, if not I am sent home and I miss a week. If they put it in certain places on my wrist it also means that the needle keeps dislodging causing the drip machine to beep. The nurse then has to come and reset it so you can imagine the chorus of beeping going on around us, all adding time to the overall chemo session. Hmmm. My session is long anyway, I have to have a two hour bag of fluids to flush my kidneys, then a half hour bag of gemcitibine which hurts when it goes in, I could have this slowed down but I prefer to ask for a heat pack and just watch the clock. This is then followed by an hour long infusion of Cisplatin. And finally we finish with another two hour bag of fluids all to protect my kidneys. My kidneys are my friend if they get damaged I cannot have chemo and the cancer can take over. But when you add into the equation all the 'occlusions' (times the needle moves) the bag changes etc my chemo session takes on average seven hours. A long old day, I go prepared I take the 'chemo' bag which has the 'chemo project' a crochet hooded cardigan for the twins, a codeword book, pens, tablet, phone, drinks and now my lunch. I used to eat the provided lunch but found it really unpalatable so now I take my own in. The chairs recline so I often get settled with my massive bag and snack, facebook and crochet my way through it. If Jo is with me we chat companionably and do much the same.
Chemotherapy works by damaging the DNA of fast growing cells in your body, they alter the cells DNA causing the cell to commit a form of suicide. Cancer cells are fast growing so this is a good thing unfortunately it does not distinguish between cancer cells and good cells so the fast growing good cells are also damaged. This is what causes the side effects. Hair loss is a major one, and you do not just lose your head hair, you lose all your bodily hair including eyebrows and pubic hair. I am actually not to fussed about this, my hair needs to be replaced as a hairdresser damaged it and I am quite lazy so the idea of no bikini line or hairy legs and armpits appeals for a while. It also damages your stomach cells, bowel cells, white blood cells and red blood cells though. This causes indigestion and acid reflux which on top of the nausea is a real pain, diarrhoea and a comprised immune system.
Trying to type a blog with two active toddlers on the bed is a bit of art I can tell you....they are keen to add their twopenneth worth.
I find that for the first 24-48 hours I do not feel to bad, but the first thing to start is the metallic taste, it affects everything I eat. Ruins the taste. The only food that really tastes anything like it supposed to is really spicy stuff. Not so great when you take into account the next side effect to begin, the indigestion and acid, the steroids I am on make me eat constantly even though I don't want to and I know it is going to hurt later. I take acid reflux tablets to help but often just end up awake for hours until it abates. This then feeds into the extreme constipation that I have thanks to the huge amounts of anti sickness and morphine tablets that both cause this problem. It is agony to go to the toilet, I hate eating because I know I have to go. My poor bowels. Oddly the one side effect I wouldn't have minded until today is the diarrhoea but that has now happened and is just as sore. My sleep also becomes disturbed and I end up watching reruns of history and detective programs until the early hours, thank goodness for v+ I have lots stored for just such nights. So far touch wood, the immunity issue has not reared it's head, this could be because I have four children and a strong constitution but who knows? This could equally not work in my favour, best just to avoid public places from day 8-15 of my cycle. My chemo cycle is three weekly, I have chemo for two thursdays and then the third thursday I get off so my body can recover in time for the next cycle.
I am becoming accustomed this now and am not moaning, it will all be worth it if it shrinks the bastard. I can visualise the tumour getting a damn good bashing if the rest of my body is feeling so poo then surely the bastard is feeling crappy too? I am telling you so you know what it is like, whether you are going through something similar, are caring for someone going through it or have never really been in a position to know what actually happens but may need to know in the future. I hope you don't but forewarned is forearmed maybe?
I am now halfway through my chemotherapy journey, no doubt at some point in the future I will have to go through it again, in fact for the rest of my life I will no doubt be receiving some form of treatment. Eventually the drugs I am on will stop working because the cancer is clever and learns to fight it off, then they will have no choice to give me less effective drugs until eventually it all stops working and then I really only have the clinical trials left to me. I hope that I am one of the lucky ones and this chemo works well and puts the bastard in retreat for a long time giving me a good length of time with my family but if I am unlucky and the cancer reoccurs quickly and aggressively we could very quickly find ourselves mowing through the available chemo drugs until nothing is left. Fingers crossed this is not so and that my bodies own immune system can recognise and fight off the bad cells. Eventually one will get through though.
I hope I have not bored you? The boys are still here, having some juice now and biscuits and milling around my bed with Older master T buzzing around like mother hen. God love him. I certainly do. Oh and Little Miss H has now joined us...so much for bedtime eh? ;)
Speak soon.
