So, Ady was not much better and so I took him to the doctors (such a lovely man). He tested a urine sample and sent it off to the hospital and during the conversation, Ady mentioned that he had a dry cough. Now, Ady takes Methotrexate for his arthritis ( I think I already mentioned this) and one of the possible side effects of long term use of this drug is lung damage...soooo, Ady is sent off for a chest xray...will this ever bleeding well end I ask myself !
While Ady had gone off to do his urine sample, the GP said to me that he thought that Ady was very down in the dumps and that we should keep an eye on him as he is just getting one blow after another. We agreed that he is usually very strong and hopefully he will bounce back. I really don't know how Ady copes with it all..I am not too sure I would cope as well as he has so far.
The urine sample came back clear and so we are waiting for the chest xray results. I hope to God they are clear. What will we do if they are not?, what will the treatment be?, how will they treat that on top of his cancer? and so a new worry starts, on top of all the others...
To take the pressure off Ady thinking he was letting his customers down by not working, and him feeling that he should be providing for his family, not lying in bed feeling ill, our GP gave hum a sick note for 2 weeks, to be reviewed until his surgery. Psychologically for Ady, this gave him 'permission' to take it easy, have time off work and gather himself together.
This week,he has been up and around more. When it all gets on top of him, he just goes for a sleep. How he can do that, I will never know...normal people, when they are stressed, cant sleep at all !!
Bobby from PALS had been really busy on our behalf. She really felt for us and our situation and had got my email to the right people.
I had an email from our MP's secretary to say he had written to the PCT as a matter of urgency and would get back to me with the answer......too late mate, I've got my friend Bobby on the case!!
The next morning, I got up and switched on my computer to check emails and stuff, only to find that I had no flipping internet and no bloody house phone...that's ALL I need !
So I got on the mobile phone to the internet and phone people and they said it was a BT fault and would send a repairy man to fix it, within 3 days....three bloody days !!
They transferred all numbers to my mobile, free of charge. Bobby had told me that a lady from the PCT was going to ring me...talk about stress !
The next day, we had been out for the day, and came home to find the phone working YAY, so I tried the internet and it wasn't working...bugger, so I phoned the internetty people to get them to help as I has pushed the reset button on the router thing that had buggered everything up.
So, I am going through with the man on the phone, and clicking various things and typing in numbers when I am told to, and concentrating very hard, when the mobile rings and it is the onco nurse.
Ady answered the mobile phone, and while I was typing and concentrating, I could hear him asking her to ring back in half an hour so she could talk to me. The PCT has asked her to ring us to try and reassure us that Medway would be fine....
The next minute, the bloody home phone went dead and I lost my internetty man who was trying to get me back on line FFS !!
So, I spoke to the onco nurse, who was very nice and she said that our own onco nurse really felt for us and wanted to see if we would like the pre op talk thing at Pembury instead of Maidstone as it was easier for travelling. This is booked for 7th Sept at Maidstone,which Ady wanted to keep as it is with 'his ' team who will be looking after him during and after surgery.
While on the phone to the Onco nurse, there was a massage left by a chief executive lady from somewhere up high ( I cant remember where, but I have her number!) who was lovely.
She said that the nurses, lady from customer services at the PCT (who handles the complaints) and Bobby, all really felt sorry for our situation and was doing everything they could to make it better. This lady is in a position to change things !
The up shot of the whole thing is that the PCT and cancer commission have decided that all uro surgery will happen at Medway from 1st Sept, the lady upon high has said that there has been a lack of communication and that it is happening from 1st October, and that she is doing her best to get Ady's operation to happen at Maidstone in September.
I don't care whether there is mis communication, or they are back tracking because they know I am kicking up a stink...as long as the op happens at Maidstone where he is closer to home and we can visit easily and the team who have been looking after him all along will be there, we don't actually care !
The lady is going to ring me on Monday to let me know where the op will be and whether I have to take this further....we will see !
If you are bored of reading this, then you want to try living it, It is so much more exciting, you get to meet new people, make new friends and learn lots about life.
A friend of mine said to me a while back, that our phone book would change over night, and over time, that has happened.
Some people have shown true kindness, while others have run for the hills. Some surprising, and some not so.
My friend Mary made the effort to drive for three hours down the motorway to come and take me and the girls out for the day. She had not met the girls before, and we had only met a few times previously, but we chat a lot over the internet and on the phone.
She came early in the morning,and we jumped in the car,and headed in the direction of the coast. We were going rock pooling and google said that Saltdean was the place to go. So we headed in that direction, not really knowing where we were going, with no map, just road signs for help. Anyway, to cut a long story short, we ended up in Rottingdean, which was far from rotting !...we never did see a sign for Saltdean...On the way, we pulled up at the forest and stopped at the ice cream van. Not bothering to get out of the car, we pretended we were on a drive thu, wound down the window, ordered our ice creams and drove off with the girls giggling in the back and the ice cream lady thinking we were completely mad ! Me and Mary were having a great time being so childish !
We had the most lovely fish and chips in the local pub, cooked by a very nice man from Africa, and the village was very pretty indeed. We paddled in the sea and ate more ice cream and fizzy drink.
On the way home, even though we were stuffed, we stopped off at a different place in the forest and had a cream tea...my god, we stuck out like a sore thumb, looking a complete mess with our buckets and spades, smearing cream all over our scones and loudly sipping coffee and tea, with the girls slurping their milkshakes through straws, while old posh people were trying to have a pleasant afternoon....we didn't stay long !
I had another friend who has fallen out with Mary and I had written on Face Book that I was going out with her for the day. Later that evening, I noticed that she had deleted and blocked me. I wont type here what I think of that. For once,I will keep my thoughts to myself as I have other things to be thinking and worrying about.
Thank you Mary, for giving us a really lovely 'cancer thinking free' day