Saturday, 25 February 2012

Day 1 of 20

When Ady went to see the Rheumatologist (thank God for spell check) back in December, he said he wanted to see him in three months time.
The receptionist said that we would get one through the post. We thought no more of it, cos we usually get an appointment through the post, and forgot about it.

Well, the postman came with our letter.
It wasn’t with the date of an appointment at all, it was with a bloody 0845 flipping number to ring, to make the appointment. And if we don’t ring within 14 days then we will be struck off the list. (good job we are not on holiday then eh ! So I rang the NHS number and was given a list of about five options. 1 for children, 2 for old people, 3 for mental people, 4 for something else and 5 for some other things plus bones.
So I pressed number 5 and waited, and waited and waited. They were sorry but all the phone people were busy so I could either leave a message or ring back. I took the ring back option, so the next day, I went through it all again , and again they were busy, so I took the leave a message option this time and they would ring me back within 24 hours.
The next day, they rang back and asked to speak to Ady to make the appointment. Ady happened to be out with one of our neighbours at the time, so I said that I can make the appointment. “Oh no” she said, “I can’t speak to you about it because you are not Ady and it doesn’t say anywhere here that he has given permission to speak to you”
I thought to myself, “Bleeding hell, it’s only a bloody appointment”, so she said that she would send an appointment in the post and if he can’t make it, then ring back and change it. Funnily, whenever we have had to change an appointment, they have never had a problem with speaking to me...oh well, never mind, I asked her to make the appointment for after 20th March as he is having radiotherapy until then.
God, all this patient choice drives me up the wall sometimes. Why can’t they just do what they have always done and send you an appointment and if you can’t make it, then ring and change it instead of all this faffing about. It’s only a minor irritation but still....what a flipping carry on!

Last Wednesday was day one of radiotherapy.
Ady’s session time was 9.25. So, I got up at 5.45, had a quick shower, some coffee and fags, let Bluebell and Pepper ( the chickens) out,  fed the cats, turned the fish’ bubbles on and at 6.45, I woke Ady and the girls up with strict instructions that we were leaving at 7.35 prompt so no buggering about!
Off I went to get Brian (my elderly man I look after) up and came back at 7.25 (timing is crucial donchaknow).
Ady’s timekeeping is shite, frankly, and he is not that good at getting the girls moving either, so we all set off at 7.47.
I know it was 7.47 cos it said so on the clock in my car when I started it.
Off we went around the back roads to take the girls to school. Well feck me, if there wasn’t a lorry whose twat nav had sent him around the lanes. No one could get past at all cos the road is so thin. Everyone was doing 52 point turns in the road to go back the way we came and take the longer route, so we did the same...bloody cars everywhere and some people simply shouldn’t be driving, and dare I say it, but especially mothers in 4WDs.We managed to get to school and dropped the girls off before making our way to Maidstone. At that time in the morning, we were expecting the traffic to be pretty crap, and it was, going the other way, so we had a lovely clear run and got to the hospital in good time.
We found the car parking attendant. I couldn’t tell if he had a limp or not cos he was sitting in his hut..never mind, we showed him out benefit scroungers paper and he gave us a season ticket for a week.
That was all nice and easy and off we went into the hospital. No burning smells or anything!
We signed in at reception and she checked that the time for our appointment was OK for the next day. Ady went off for his wee and we settled down in the waiting room. I watched the news on the screen and Ady started his 500 ml of water 45 minutes before his appointment.

Ten minutes later, along came a nurse who called Ady’s name.
She came over to us and noticed Ady was just finishing his water.
“Oh dear” She said. “You are supposed to have drunk that and have a full bladder 45 minutes before you appointment and then wait until we call you.”
Ady said “That’s not what we were told the other day, and anyway, I will piss myself if I have to do that”
“Well, never mind this time” She said. “Come with me and we well get you sorted” and off he went with her for about half an hour. He was shown what to do and where to go and given his special shoes in his green hospital bag.
They gave him his zapping and off we went...completely confused about this whole water drinking business and whether he is supposed to go to the hospital, have a wee and then drink 45 minutes before being zapped,( which is what we were told the other day at the mapping scan thingy) or drink before that, don’t wee and hold on for 45 minutes before the appointment.
This whole wee and bladder business is very important, cos you don’t want you bladder zapped or you will end up with a lifetime of piss problems!...His arse, however, will just have to take its chances.
Never mind, we have the MacMillan review tomorrow, so we will check what to do then.
Rather handily, it was about 10 o’clock when we got out of the hospital. Just in time for women’s hour on radio 4. Whatshername  does some interesting talks sometimes.
Wednesdays talk was about women and having cancer when you are pregnant and whether to have chemo while pregnant and risk the childs life or risk your own and wait until you have had the baby or terminate the pregnancy and save yourself. Bloody hell, what  choice..poor poor women.
I looked over to Ady, and he was fast asleep, so I drove along quietly with my own thoughts about how cancer knows no boundaries. It doesn’t care who you are or what you do, whether you are rich or poor, with child or without, young or old. If it gets the chance to grow inside you, then it will and there is nothing we can do about it.

Monday, 13 February 2012

Zapping and Fires.

Hmm, throughout our whole saga, I don’t think anything has gone without a hitch, and our visit to the hospital last Monday for the mapping scan and wotnot was no exception.

Everything was going very well and we got there safely, without a hitch, oh, apart from some old bat pulling right out in front of me along the main road as if I wasn’t there, but at least now I know what my car horn sounds like, although I think she was deaf because she didn’t even acknowledge that I had bibbed her and called her a stupid fecking cow.  I did think about getting out of my car at the next convenient stationary moment to give her a good telling off, but there weren’t any, so I had to follow her for a few miles while Ady and I were discussing her lack of driving skills, and how close I was to hitting her and how clearly my brakes are working well although perhaps I ought to check the tread on my tyres now. And then she turned off...well, it was more of a three point turn off actually, down another road. We gave her a final ‘silly cow’ comment coupled with a glare, and then carried on with our journey. Half a mile later, we had forgotten the incident had ever happened, until now that I am writing this blogette bit and I am going through all the events of the day in my mind!

Oh that’s right, it had been snowing over the weekend, and we did have a bit of a panic on about getting to the hospital at all, but my brother in law said that he would happily take us in my sisters 4WD, so we did have a back up emergency plan, but in the end, the roads were clear and we didn’t need them and actually, the bonnet of her car is much longer than mine, so probably would have hit the old woman with one foot in the grave and another on a banana skin who pulled out in front of me earlier, so every cloud and all that.
We got to the hospital in one piece, and so had everyone else so it seemed. Not a bloody parking space in sight! So we dumped the car on double yellows along with loads of other people and went in for our appointment. We have got this piece of paper that says we have free parking in the oncology bit that we leave on the dash board although I think we have to see the parking attendant to get some kind of weekly ticket or something when radiotherapy starts.
We signed in at reception, and they told us to go around the corner and wait in the seats by MacMillan. We were just on our way, and in front of us were a load of worried looking official people and a few nurses. There was also a bit of a burning smell.
One of the nurses went to the fire alarm and pressed it and the next minute, we are turned around and told to leave the building! Can you blood believe it !
Everybody started coming out of different doors, all wondering what was going on and quickly realising by the smell, that there was an actual fire.
Ady said to me “This will be something to write in your blog” and I thought, “Bloody brilliant, I must make sure I take notes” until various cancer patients in mid treatment were being brought out in wheelchairs, dressed in gowns with blankets over them. Then I forgot about my blog. I had to hold back the tears as I watched some clearly very unwell people being taken outside in the snow.
Why they couldn’t have moved them to the other end of the hospital in the warm, where they weren’t evacuating, I don’t know, but it made me very sad and humble.

We all had to stay outside for about half an hour while the fire engines turned up and did their thing and then we were allowed back into the main waiting area bit while all the side rooms and off shoots were checked.
The bouncers, guarding the doors to the rest of the hospital were all menopausal women with facial expressions of self importance doing a very important job. We were not allowed within a foot of their door.
Once the firemen had given the all clear, and the electrician was called to sort his wires out (which was the cause of the fire), the bouncers facial expressions immediately changed back to soft, gentle approachableness as they let us through and they went back to their secretarial roles.

We made our way round to the Macmillan bit where we were told to go and waited for our turn.

The people in radiotherapy are a nice bunch. They are all very cheerful and seem happy in their work.
Our first appointment was in the Quiet Room.
This was a chat with one of the radiographers about what was going to happen and the side effects to expect. Ady also had to sign the agreement form.

I hope Ive got this next bit right. Ady is going to have 52.5 Grays over 20 fractions.
The fractions meaning the amount of times and the grays meaning the amount you get....I think...

We then went to see a chap who was very nice, and had a chat with him. This time, Ady had to have a wee and then drink 500ml of water. He then has his radiotherapy about half an hour later.
They want your bladder full to minimize collateral damage. If your bladder is full, it lifts up and out of the way of any zapping, nearly, some of the bladder will get hit, but if your bladder is empty, then it will sit exactly where they want to zap the prostate bed and then he really will be buggered!

So after drinking his water, he went off for the mapping scan and tattoos. He has one tattoo on each hip and one in between his winkie and belly button so when they set the machine up, they know where to aim.
At the moment, the scan is with some rather brainy people who are probably good at physics and maths and they are working out where to shoot. We were told that this bit is a complicated process with angles and such like to take into consideration.
Ady will lie on a bed, and he has to go all floppy while the radiographers put him into position. Then this machine rotates all around him, stopping at each hip to have a blasting session and it stops above him to blast straight down through. With that bit, the radio wave things have to go somewhere, and unfortunately, that will be through his arse. Another pounding, the poor sod, and this is where we might get some problems. He also might sail through it...we will see.

So that was that, and they were lovely.
We then went off to speak to the receptionist about travelling expenses because thingamy from the government told us we could claim.
We were delighted to discover that we can have 10p per mile. YAY, so that means we get £1.75 each way. Better than nothing I spose, but what pissed me off, was that on the way home, I thought I would fill my car with petrol. I realised mid fill, that I was filling my car up with bloody expensive deluxe petrol. Bugger, so that is our travelling expenses gone already. The man in the petrol station told me it will be good for my engine and make my car run better. I can’t say I have noticed myself.

Just before I go, the benefits people wrote to tell us that Ady is not entitled to DLA, so I wrote back and said “I beg your pardon?” so they have written back and said OK we will think about it again and if you don’t hear from us in eleven weeks, then ring us.
Well, I wont be doing any such thing, I will just report them all to my new chum at Iains place. So there!

Wednesday, 1 February 2012

A House Full Of Women.

Cor, one minute, you are sitting around thinking, “hmmm, the next lot of treatment is not until next year”, and then the next minute, suddenly, next year is here, without a word of warning, and then, blimey, the treatment is decided and so the next stage of the journey begins!

Ady is going to enjoy six months of hormone therapy by way of Casodex and  Tamoxifen and four weeks of radiotherapy.
The Casodex is going to stop his testosterone from doing its thing and the Tamoxifen is going to hopefully stop him from growing a pair of boobs, God help us all!
Naturally, we call them his womanly tablets.
The oncologist said that she was going to fax our Drs Surgery straight away, to ask them to do a prescription.
I rang on Monday, to ask if they had it and they said to ring back in the afternoon, or on Tuesday. So I rang back on Tuesday. Nothing is ever straightforward and so of course, they hadn’t received a fax. *sigh*
They suggested that I ring the oncologist’s secretary to make sure she had actually faxed, and used the correct number.
I thought to myself “This is another fecking morning gone, having to deal with complete numptydom” and I rummaged through the ‘Oncology file’ (ive got lots of called colon, one called Bones, another called Benefits, another called prostate and because WHSmith do them in packs of five, the last one is named misc) and found the secretaries number.
I left a very polite message and asked her to call me back. I put the phone down and immediately realised that I hadn’t given her a number to ring me back on. That will teach me to think everyone is a numpty apart from me!
Bless her, she did ring back and told me that she had just faxed again, so if I ring the surgery back, they should have it.
So I rang the surgery, and the receptionist popped upstairs to check, and yes, they had got it and she would deal with it so we could pick it up.
This morning, we picked up the prescription and he has just taken his first womanly tablet. Hopefully, he will be multitasking by tomorrow.
At the same time all the phone calls were happening back and forth, the postman delivered a letter from the hospital with all the dates and times of radiotherapy. Everything all happened at once, but anyway, radiotherapy starts on 22nd February.
We go next Monday to have a mapping scan or some such thing and to talk to some people about it all. I will let you know more when we have been.

I have told Ady that one of the many side effects of Casodex  is short term memory loss and confusion, as well as fatigue and things.
Well, last Sunday, he had arranged for our friends Kathy and Roy to come for Sunday lunch. “They will be here at 3 o’clock” he said.
I did a roast chicken with all the stuff you do with a roast chicken and I had planned for everything to be ready in between 3.30 and 3.45. It came to 3.15 and I was wanting to turn the veg on or the roast potatoes would over do and Kathy and Roy hadn’t turned up yet which is unlike them so I asked Ady if he was sure that it was 3 o’clock that they were coming.
“Oh, well perhaps it was 4.30 then”
“WHAT”, I said.
“Well” he said, “You did say those tablets will make me confused”
I gave him one of my looks and said “You haven’t started fecking well taking them yet” .
Just in the nick of time, there was a knock at the door and Kathy and Roy had arrived.
Ady is still alive and I have now told him that actually I was lying and none of his tablets have ANY side effects whatsoever!

I said to the girls in the car on the way to school this morning that Ady is starting his womanly tablets today and that he may feel fatigued and need to sleep a lot and not to worry if he is being a bit odd for a while.
They both laughed and said that they probably won’t notice any difference cos he is always tired and asleep and he is mad anyway. So the girls are coping well.
So in a nutshell, everything is normal here J

We are Emma, Ady, Charlotte and Stephanie and we live at
Prostateless Avenue,