Chapter 6, in which brave knights turn into cowardly shrews and dragons learn to stick swords in themselves every day...
I am reminded, sometimes on a daily basis, of all those who suffer far more than myself. Of those for whom this illness is terminal, only months left to live - facing the end of their time on this earth - what thoughts go through your head?!, of those for whom it returns and they have to go through all of this over again, as if it wasn't enough the first time round, of those who suffer from pain and depression, and those that even choose to carry on working. I am young and fairly fit and have still managed to carry on some of my lifes loves in short bursts, but sometimes the tiredness takes over and I just have to lay down. There is a limit to what I can do. Could I push myself to do more? Is it in the mind? I feel guilty of my laziness. The tiredness seems to have dragged on more this time. A week in and I feel better today but it's a long busy weekend ahead with festivals and birthdays and kids to entertain during half term.
I have so far given myself 7 injections. My thighs are so sore and bruised I can hardly touch them, but actually sticking a needle in yourself doesn't hurt like you'd think it would. Take a big pinch of skin and fat from your thigh, deep breath and jab it in. Then the ache as you slowly press the plunger in and the sting afterwards. The more you do it in each thigh, the harder it is to find a site to do it. I'm very proud of myself for managing to inject myself anyway (it makes me feel like a true warrior!) and it means the nurses only have to come round once a week. It gives me more freedom and saves them a daily job. I have got to know them quite well and the conversation is changing to become more personal as well as more background details about their job. They are all really nice. I will be seeing them until at least September when I will have my picc line removed (5 weeks after the last chemo) and then it will be the first operation. Five days in hospital in a morphine induced haze, pain, scars, chest drains, numbness, swelling, no skating for possibly months afterwards. The thought secretly terrifies me and I want to cry every time I think about it. The chemo is the easy part. I can deal with this, but I really don't want that operation! I am trying to tell myself it is 3 months off and there is no point spending that whole time worrying about it. I am trying not to think about what a mess my body will be in afterwards. I'm feeling very unfeminine as it is without this impending disfigurement.
My sleeping and appetite have been quite poor for the first week after treatment but are picking up now. I am craving curry all the time (last session it was branflakes), and I have managed to put on a bit of weight. I need to put on at least 5 lbs altogether to be nearer my normal weight. Having had eating issues in the past there is a constant battle in my head of food vs exercise. Food is slowly winning for now. Although I daren't have scales in my house - ever, I am weighed every 3 weeks at the hospital. I have put on a couple of pounds. I feel ashamed. But that's how it will always feel to me. My challenge is to think healthier and fitter and for that I need to be heavier. I have ignored the letter refering me to a dietician saying I am at risk of malnutrition. I'm not anorexic anymore. I am aware of how my body is in reality and not just how it seems in my head. I want to be strong in both mind and body. So I eat. A lot. Mostly because I'm bored. And I exercise. A bit. Mostly because I'm tired.
So as far as dragons and shrews go, more death on the battlefield. I will not be treated in such an inconsiderate way. I have enough to deal with. On with this battle!
I have felt absolutely fine after this chemo session. My blood results were up marginally enough to 1.2 (they have to be at least 1). This is the start of a new drug now called Docetaxel for the last 3 of 6 sessions (the previous 3 were FEC100) so the side effects are slightly different but similar. I have to take double the amount of steroids and start the day before treatment at 8am and 2pm so I can sleep at night. (On FEC I had to take them for the following 3 days after treatment just in the morning). Well I was awake all Sunday night and eventually got an hour in between 8 and 9am before I had to set off to the hospital. The drug is administered by a 1 hour drip instead of 4 different syringes but you don't have to wait around for half an hour after you've had the anti sickness injection (which is done into the PICC line) like you do for FEC.
I have so far given myself 7 injections. My thighs are so sore and bruised I can hardly touch them, but actually sticking a needle in yourself doesn't hurt like you'd think it would. Take a big pinch of skin and fat from your thigh, deep breath and jab it in. Then the ache as you slowly press the plunger in and the sting afterwards. The more you do it in each thigh, the harder it is to find a site to do it. I'm very proud of myself for managing to inject myself anyway (it makes me feel like a true warrior!) and it means the nurses only have to come round once a week. It gives me more freedom and saves them a daily job. I have got to know them quite well and the conversation is changing to become more personal as well as more background details about their job. They are all really nice. I will be seeing them until at least September when I will have my picc line removed (5 weeks after the last chemo) and then it will be the first operation. Five days in hospital in a morphine induced haze, pain, scars, chest drains, numbness, swelling, no skating for possibly months afterwards. The thought secretly terrifies me and I want to cry every time I think about it. The chemo is the easy part. I can deal with this, but I really don't want that operation! I am trying to tell myself it is 3 months off and there is no point spending that whole time worrying about it. I am trying not to think about what a mess my body will be in afterwards. I'm feeling very unfeminine as it is without this impending disfigurement.
My sleeping and appetite have been quite poor for the first week after treatment but are picking up now. I am craving curry all the time (last session it was branflakes), and I have managed to put on a bit of weight. I need to put on at least 5 lbs altogether to be nearer my normal weight. Having had eating issues in the past there is a constant battle in my head of food vs exercise. Food is slowly winning for now. Although I daren't have scales in my house - ever, I am weighed every 3 weeks at the hospital. I have put on a couple of pounds. I feel ashamed. But that's how it will always feel to me. My challenge is to think healthier and fitter and for that I need to be heavier. I have ignored the letter refering me to a dietician saying I am at risk of malnutrition. I'm not anorexic anymore. I am aware of how my body is in reality and not just how it seems in my head. I want to be strong in both mind and body. So I eat. A lot. Mostly because I'm bored. And I exercise. A bit. Mostly because I'm tired.
The weekly flush of my picc line consists of carefully peeling off the clear plaster so as not to pull the line out of my vein, (hurts like hell!) - I normally do that bit. The nurse then opens the stat lock clip that holds it in place and peels that off my arm, swabs with alcohol cleanser and adhesive remover, counts the dots along the line to check it is still in the same place, changes the swan lock (bung) on the end, puts a new stat lock on and reapplies a new clear dressing over it all. A syringe is attached to the bung and heparin and saline is pumped through the tube to prevent blood clots, sometimes blood is taken too, blood pressure, temperature, pulse, notes written up. It all takes about 45 minutes. Last week I noticed that the line had filled up with blood (it is normally clear) and I had to call the night nurses out to check it. I had a blood clot in it which was a bit worrying and not very pleasant to look at as it came out, but I'm sure most mums have had far worse after they've have a baby!
For the second time my temperature went up to 38 degrees so I had to go straight to the acute medical unit at the hospital for assessment again. Luckily blood tests showed my immune system was fine. It took many hours of waiting but I was sooooo pleased to go home. Emily and I conga-ed out of the ward!! Unfortunately 10 days later my immune system was too low for the next course of chemo. I had another blood test on the Friday and was able to resume Monday. This did mean rearranging childcare, lifts and nurses appointments :( but on the plus side I could enjoy the weekend without feeling ill.
So as far as dragons and shrews go, more death on the battlefield. I will not be treated in such an inconsiderate way. I have enough to deal with. On with this battle!
I have felt absolutely fine after this chemo session. My blood results were up marginally enough to 1.2 (they have to be at least 1). This is the start of a new drug now called Docetaxel for the last 3 of 6 sessions (the previous 3 were FEC100) so the side effects are slightly different but similar. I have to take double the amount of steroids and start the day before treatment at 8am and 2pm so I can sleep at night. (On FEC I had to take them for the following 3 days after treatment just in the morning). Well I was awake all Sunday night and eventually got an hour in between 8 and 9am before I had to set off to the hospital. The drug is administered by a 1 hour drip instead of 4 different syringes but you don't have to wait around for half an hour after you've had the anti sickness injection (which is done into the PICC line) like you do for FEC.
After chatting for a
bit I soon flagged, my mind spinning, agitated, my body needing
sleep. I lay quietly for about half an hour with my eyes closed
waiting for the drip, trying to rest. Sleep was impossible due to the
noise of everyone talking but I did manage to calm my mind enough to
chat a bit more and carry on for the rest of the day. I think I did a
bit of housework which is a first! I fell asleep at 6.30pm and slept
until 6.30am feeling much refreshed! No side effects of even slight
nausea, lots of energy, no appetite loss (although I have noticed
food and water taste a bit funny sometimes and the roof of my mouth
is a little sore), but generally I just felt plain normal.
