Wednesday, 14 August 2013

I get my drugs correct and have a good day

Short and slow morning walk
I wake before six, satisfied with good sleep.  A side effect of the anti-nausea injection is drowsiness, which was good for me after many nights of broken sleep.  I write my drugs timetable, and BLOG before getting up.  I am allowed to eat food today, because I have an afternoon appointment on Wednesday.  This corresponds with an appointment with my consultant.

I go for my morning walk.  It is a beautiful morning; it is warm and sunny.  I am a bit slow, but happy to be out and covering a couple of miles (at the most).  For those that know the route, I walk into the meadows up the straight path, then turn left at the red bridge, and head towards home along the stream.

Martha and Katy go out to play with friends
We have a lazy morning.  I make Martha an egg white toasted sandwich.  Katy enjoys cocoa pops (the Aldi version of course!).  I encourage the girls to get ready to go out.  Katy gets ready; Martha needs a verbal helping hand.  Somehow they have an argument that leads to Katy knocking a pile of Martha's clothes across the floor in her bedroom.  I help her put all of these away and ignore Katy.  Katy goes to play with Rosy Wilson - Dad picks her up for a picnic in the park.  I walk Martha around to Anna's house.  Martha is riding her bike, ready for a trip out on bikes.  On my way back, I can see Katy sitting in the park having her picnic; I choose not to disturb her.

I receive a beautiful double orchid from my god parents.  Thank you so much.  (I will add a picture tomorrow).

I have a sleep.

Hospital Appointment
The appointment is very late again.  It is tricky because you have to arrive at the correct time.  I tell my radiologists that I have taken my drugs correctly today. 

After the appointment I meet my specialist nurse, who checks out how I am doing.  She has a checklist:  any changes to my vision?  any headaches?  are any of my original symptoms recurring?  I tell her about my sickness from the day before, and that I have learned that I have to manage my drugs properly.  Friendly, she tells me that many patients have an experience like this during their treatment programme, and she knows that I won't make the same mistake again.

Back home for a rest
I am able to rest when we get home.  I have home made butternut squash soup and wheat free ciabbatta, which is delicious.  I then settle to watch ARGO.  I have signed up to a free trial with Love Film, and this is my first film delivery.  I haven't finished watching it yet, but I am really enjoying it.

Katy is home at 6pm and she cooks flap jack, while I cook a lasagne.  My mum went to Aldi this morning, so we were stocked up well.  Lush Lasagne for dinner tomorrow night.

Thank you all, loads of love
Sarah xxx

I muck up my drugs programme and get very sick

My day starts very well
I have a brisk morning walk, including a one mile jog from start of meadows to the River Mersey.  I do not carry on jogging, because I feel that I should respect my illness and not push myself too far.  I feel good.

Martha and Katy go to play at Saskia's
I get Martha and Katy out of bed at 9am and they have to be at Saskia's at 9.40 to allow me to get to my hospital appointment on time.  We manage their time well, and take them to Carol.  They have their swimming gear with them, money, some cakes, a hoody each...  

I remember chemotherapy during my radiotherapy appointment
Whilst I am in my radiotherapy appointment (I am screwed to the bed, and the blue lights are flashing), I remember that I have not taken my chemotherapy tablet.  I panic a little, but realise that all I can do is lie there, and tell them at the end. 
The radiotherapists contact Charlotte, my specialist nurse, who advises that I take the chemotherapy tablet immediately.

On the way home, I remember that I did not take my antibiotics the day before, either.

I take my stomach protector tablet on the way home, and at home, dig out all the drugs that I have not taken.  I space them out and take them all.  I do not have the anti-sickness drug that I have been taking, so do not take this, and at no point think that I need to take anti-sickness drugs...

Foot appointment
I have a sleep and then we head off to the Rusholme podiatrist to get insoles made for my shoes.  Many of you will know that I have a lump on the bottom of my foot that becomes very painful in proper shoes.  An old camping injury!  The appointment is on time, and very quick.  He advises me against the shoes that I wear, and sends me to Clarks to get something that he can fit insoles into.
I decide to go straight to Clarks and do this now, while the children are playing with friend.

I become sick
I am in Clarks and trying on wide fitting shoes and I become nauseous.  This is my first experience of this.  I realise that I don't have any drugs with me, and that I do not know what is going to happen next.  I tell the assistant that I don't feel well and simply buy the two pairs of shoes that I was trying.  I can take them back if they don't fit in the end.   At the till, I ask for a spare carrier bag, in case I am sick, and yes, I needed it.  I am walking back to meet my Mum, who is waiting in the car, in the Northern Quarter, and throwing up into a carrier bag, in the middle of town.  I text her to say that I feel ill, and can she call (she can't here her phone ringer); she rings, but we agree that I have to walk to her, because she doesn't know where she is!  At the car, I cannot stop vomiting - it feels endless.

When we get home, I take the anti-sickness drug and lie down.  Deep breathing, I try to fend off the nausea, but cannot.  I end up vomiting again, and again.  I do not know what to do about the drugs, so phone Charlotte, who is not available.  I phone the Christie hotline, who advise that I take another tablet, and that if I cannot stop vomiting then I must call my GP to get an injection. 

This is what I end up doing, so by 6 pm I have two nurses with me, to give me a very painful injection in my right arm.  They were both lovely, and seemed to understand how I could end up in this condition.  My yellow folder is filled in. 

My mum has gone into caring overdrive.  Basically, I feel sick and do not want to be sick.  My mum is trying to find ways to help - water, hot water, rice cakes, other biscuits, a cup of tea.  All of which I reject (not the water).  

My friend Chris starts texting me, in the middle of this, and I have to reply to him and say don't text for a while because I am not well and sleepy. 

The side effect of the injection is drowsiness, so I am falling in and out of sleep, and eventually the night passes.  I feel OK now.  I have just got to get up and start taking the tablets...

So, here is my drugs regime - that I must follow.

6 Fields Brain” – radiotherapy and chemotherapy programme.


Date
Time of appointment
Last time to eat
Time of anti-sickness tablet
Time of chemotherapy tablet
Co---trimoxazole (antibiotic)
Allowed to eat
Omeprazole
(stomach protector)
Dexamethazone
(steroid)
Mon
11 ish
Do not eat
With each meal
10ish
Take 2 x 480mg
12 ish
After appt
With lunch
Tues
11 ish
Do not eat
With each meal
10 ish
 
12 ish
After appt
With lunch
Wed
2 ish
9 ish
With each meal
 1 ish
Take 2 x 480 mg
3 ish
When I get up
With breakfast
Wed
Meet consultant
 
 
 
 
 
 
 
Thurs
11 ish
Do not eat
With each meal
10 ish
 
12 ish
After appt
With lunch
Fri
11 ish
Do not eat
With each meal
10 ish
Take 2 x 480 mg
12 ish
After appt
With lunch

This programme continues until 12 September 2013

Drugs regime

Chemotherapy –              Temozolomide                                  Take once a day before radiotherapy.

Antibiotic –                         Co-trimoxazole                                 2 x 480 mg every Mon Wed and Fri

Anti-sickness -                   Metoclopramide              Take one tablet up to three times a day.

Steroid -                               Dexamethasone              1 x 2mg every day with food.

Stomach protector          Omeprazole                       Take before food


And finally - Beechwood Cancer Care Centre
Martha and Katy had their first appointment at the centre, for counselling.  I am not in any fit state to get them there, so have to phone to cancel the appointment.  I am disappointed about this, but the counsellor calls and offers to do a home visit, which will be a good start to the process.