Cancervive diary
The Big C06 may 2008
Home - 24 hour urine test
Oh has anyone ever done one of these? Not very nice to talk about, but hey, the life of poor old Monkey is changing yet again. I have to do this so they can see the protein levels and all sorts of other lovely things.
All I'll say is, how nice it is when you don't have to take a jug with you to the bathroom each time! Sorry to be so vulgar but I had to say it! :-)
PJ - I know it's your job and you love it, but for the life of me I can't see why looking and this and other stuff like blood is SO exciting! Hey ho, each to their own I suppose.
07 may 2008
local hospital, 24 hour urine test
How lovely, I now have to make a trip to the hospital to take a urine sample. I now realise that the kidneys are not working as well as they were due to the comparison of this bottle and the last one! I won't go into details but I'm sure you can guess! :-)
Whilst here I'm going to kill two birds with one stone and have a Blood Test as well. What a life I lead huh. Exciting or what?!?!?! I bet you're all secretly jealous really!
09 may 2008
uch, lymphoedema clinic
I was beginning to wonder if I was going to get there again. Transport...say no more. It was late, but hey I got here in the end!
Anyway I saw Jenny this time. I've seen her before and she's very helpful so I was at least hopeful that something can be done to help me at the moment.
We had a chat about the 'renal failure' that I've been told I have. She said that it would probably affect the Lymphoedema but there is not a lot that they can do to change that as the failing kidneys won't stop it. Oh great, something else to add to the list.
Once again, my legs were measured - I had some lovely black writing on the side, but washed it off before I remembered to take a photo - sorry guys - you'll just have to wait another time to see my lovely Lymphoedema legs!
Now for the bad news. As I have these painful lumps on my legs and the CRPS now too, I can't withstand the pressure of my stockings so they are going to give me a lower compression level set and see how it goes. They are not so nice looking, but apparently, once you've tried 'em you won't go back to the other ones. They are supposed to be cooler in the hot weather - oops - silly me - I missed it - that was yesterday!
Then once I can withstand the pressure of the next level then I'll be back into those. My other ones have now got holes in as I've had them so long. I was told that they only last six months, but some of mine are definitely over 2 years old. Now I know they are not helping much, but when it's all you have, what else can you do?!?!?!
So when my super-duper-fandabydozy new ones arrive from Germany I will let you know and who knows...I might even take a photo. Don't get too excited now OK!
Next up on my list is my kidney appointment on 27th May 2008 at the Nephrology Clinic. Ohhh what's that I hear you say? Well Neprology was a new one on me. I wondered what it was and looked it up on the net and it concerns itself with the diagnosis and treatment of kidney diseases - you learn something new every day huh.
So now, its a case of waiting and seeing what happens next. Furry Monkey is a little bit worried now - it seems the old body is falling apart and it's one thing after another.
16 may 2008
at home....seen any policeman anywhere...???!!!
Early this morning the doorbell rang and there was a guy there who said "Sorry but I have some bad news for you - in your driveway is a pile of broken glass and your car has been dumped half way down the lane at the back of your house. It's had its back window smashed and the radio has gone". Hells bells....!!!
So I woke John and asked if he'd heard that. He'd heard part of it, so I told him the rest and stood well back. As you can imagine he was not a happy bunny. He has been working on the Red one and the Blue one has been sitting in the driveway getting bits done as and when. The blue Range Rover is over 20 years old, so it's not a souped up brand new car that's for sure. It is however, designed for off roading and has had some pretty special items put on it to make it easier when off roading.
So off down the Lane we plodded, walking sticks helping us along the way. The girl one of the little houses opposite came out and said she'd noticed when delivering mail to someone that it wasn't in the driveway and she thought it strange. She was amazed she hadn't heard it as she knows Range Rovers are not quiet cars. She also loves the Range Rover too.
Anyway, when we got to it, the door was open, the window smashed, the steering lock was drilled out, the wires in the steering column had all been pulled out and the radio, surprisingly, was just on the passenger seat! The obviously knew what they were looking for and wanted it specifically and had come prepared to get it with the right tools. How they drilled it out without anyone hearing I'll never know. Those houses even with the door shut you can plainly hear talking outside and the slightest noise too.
They'd obviously pushed it down the Lane, then hoped to start it from there and drive it away. However what they didn't know was that it hadn't been started for a couple of months and therefore the battery was totally low on juice and it probably wouldn't go so they just dumped it. Sad......poor Range Rover.....it took three strapping men to push it back and one of them said "Phew, I'm knackered now and need a tea!". So it couldn't have been easy and we don't know how many of them there was.
The next saga was.....do we report it as a crime? Will anything be done? John said it's not worth it, but I said he should. It's a crime after all and it might alert them to others in the area in this is what they are looking for.
There begins another tale. In the end John decided to report it. Well he tried. He went to our local police station only to find a handwritten notice on the door saying "Closed" and no clue as to where you can contact a Policeman or Policewoman! So he went to the next town and again, another handwritten sign saying "Closed". This time there was a note saying go to 'Civic Offices' to find Police. He went there, across a building site, fought a hedge or two to get in and finally found a big office....totally empty! He hunted around and finally found a couple of people.
"Where can I report a crime?" he asked. "Oh we think the person you need might be at lunch". "Right" said John "Do you know when they are back or if they are the right person?" "No we don't know for certain but can only assume they are the right one". "Great" says John "A crime has been committed and can you report it to anyone? No it appears not" and he started to walk out.
"Oh, is it a major crime?" said one of them, as if it made a difference if it was major or minor. "Well if you call theft of a vehicle and damage to property a crime then yes but don't worry, they may be at lunch and it's too much effort to even find out, no wonder people don't bother". He ain't wrong is he. What is the point of police if:
1. They aren't available and the police stations are closed.
2. If you CAN find a policeman, they don't do anything about it anyway.
It's right what they say in the media sometimes. The Police aren't doing enough to stop crimes and it's us poor innocent people who work hard to get things that are being penalised, the criminals get away with everything. Including our property!
Well in our case, they didn't get it, but now I'm worried they're gonna come back again and get it now they know about it. Perhaps we should get a Rottweiler or a huge great big German Shepherd dog instead!!! We could borrow our neighbours big husky dog for a while wonder if that might help!?!?!?
Oh, if you see a policeman with nothing to do - send him in our direction will you?!
27 may 2008
local hospital, sidney the kidney appointment (thanks PJ!)
AKA NEPHROLOGY (the official title!)
Well Sidney the Kidney makes it sound more friendly doesn't it! :-)
I had a letter through about this appointment from Epsom and St Helier NHS Trust - however it was at a local clinic which is good. I must say though, the service from there was excellent. I spoke to the Consultants secretary about transport and she took my details and then phoned to say it had all been arranged and perhaps I could call them prior to the day just to check it was booked. Guess what...it was too!! How good is that??? Now that is how it SHOULD work!!!!!
I was picked up early but that didn't mind as I could wait for the clinic to start. Strangely enough there was one person in front of me and his appointment was 1.30pm and mine was 2.00pm and we were told clinic was going to run late - that was before it had even started!!!!! Now how can that happen?
Anyway that wasn't the worst thing. The worst thing was that there was three of us there, all early (strangely enough the patient is NOT allowed to be late, but the consultant can keep you waiting for hours - strange that isn't it!). Anyway there was a lady on the desk and the gentleman in front of me said "Do we book in here for the Renal Clinic?"
Nothing wrong with that you'd think. Well I didn't think it was rude or anything, but hells bells, the response that came back was!
Holding the lapels of her uniform she said in no uncertain terms "This is a Nurse's uniform - this means we don't do reception duties - I am a Nurse". Talk about sharp - lemons couldn't have stung more with the face she made and the tone of the voice. We were all taken aback but too shocked to say anything.
"So how do we tell the difference between a Nurse and a Receptionist then as we don't want ot offend anyone do we?" asked the gentleman. "Receptionists are in normal clothes - this is a Nurses Uniform" she replied. "You can tell the difference". Maybe she'd had a bad day, but hey, don't take it out on the patients OK. We are there because we have to be not because we want to be. Also without us, you wouldn't have a job and wear that Nurses Uniform would you...?!?!?!?! If these people who act like some sort of God would like to walk (or rather hobble in my case) in our shoes for 24 hours they'd know what it's like and we DON'T DO IT FOR FUN YOU KNOW.
The gentleman said "The Consultants are actually nice when you get to see them, but the Nurses here leave a lot to be desired!". Well he ain't kidding is he! :-(
I was waiting a long time as I was early, so I got out my ipod and always just put one earphone in so that I can hear when my name is called. I'd just turned the machine on and only just put the earphone in when I heard my name. I looked up and was surprised as it was early.
I should've known really. First of all she told me off. "You shouldn't wear those things in a hospital clinic as you can't hear me". Can I just say it might also help if she spoke English and people could understand her to start with!!!! Luckily I can understand most accents or at least pick up certain words enough to understand them. It makes me mad when the English is not good, that's where mistakes happen and errors occur whether it be spoken or written English.
So that was two of us told off before the Clinic had even started. Nice attitude huh. The so-called 'caring profession' has certainly changed since I've been a patient! I know not everyone is like it, but sometimes it feels like it when you are not well and someone moans at you and blames you for being there and ruining their nice peaceful rest time!
After all that, all she did was ask me to do a sample, even though I said I'd got mine with me as it was requested in the letter. Then you are weighed (aren't you always!) and then told to go and sit down again and wait. I think I'm beginning to understand why clinics are always late!
Eventually I went in to see the Consultant and he was very GOOD. He asked me loads of questions and said that he thinks some of the tablets I'm on are not compatible with me. He said most people are OK with them, but there are some who aren't and I appear to be one of them. He said I'd need blood tests (more of which later) and an ultrasound. He also asked if I'd done my sample yet - I told him I took it with me as requested and it had been taken by one of the Nurses (the one who moaned and didn't speak good English!).
These tablets he said he would write to my GP about but I should NEVER EVER EVER EVER take them in my lifetime again. Nor any that are in the same group as they will have an adverse effect on me. When I asked what could take instead, he said he could double my morphine again. I explained that I was only allowed so many per month (controlled drug and all that) and I wouldn't have enough to last so he said instead of writing a letter, he would fax it tomorrow so that my GP could issue them immediately for me.
After all that, the Nurses didn't like the container the sample was in (which I had made a special trip to the GP to get as they didn't give me any even when asking for a sample - what they think we'll put it in I don't know!). Anyway it was put into another container (more waste of NHS money and resources!) and then I had to take it with me to the Phlebotomist when I had the blood test done.
He said he'd like to see me again in 2 months to see what the results are like then.
Blood tests plural they should've said. I had eight tubes of blood taken. One was a special one where she had to have a flask of hot water and put the tubes of blood into a glove (one in each finger!) and tie it up and put them in the flask and immediately take it to the Labs. I wasn't going to be popular as it took a while to get all the blood in the first place and the wait for the flask which was in another room. She asked if I was OK and then went, I had to walk out into a full waiting room.
"Oh where has she gone?" asked a lady. "She has to take my blood to the Labs straight away for a special test" I said and walked out. I wasn't going to get the blame again that day that was sure!!!!
I had tried to make a follow up appointment in the Renal Clinic, but was told it would come in the post. What a waste of time. If it doesn't match my diary I'll have to waste time (and money!) making phone calls to rearrange it. Oh well, can't do anything as she wouldn't make one so I went to the Ultrasound Department to make an appointment for the scan.
I stood waiting, whilst two receptionists (looking carefully they weren't in uniform - don't want to upset someone now do we?!?!?!) chatted amongst themselves for quite a while whilst I stood there like a lemon with my form. My legs are killing me by now and it's not easy.
Until eventually they realised I was there, or rather deigned to look at me. "You won't be having the scan now" she said sarcastically to me. "I didn't for one minute expect to, but I'd like to make an appointment for one please" I said. "Oh we can't do that, it will go in the post to you". Oh great another one I thought as I walked away.
So guess what, now I've had THREE letters from the SAME hospital on the SAME day. One is a second letter to tell me something they'd already told me about an appointment change. The second one was to tell me my appointment that was requested for 2 months later was going to happen FOUR MONTHS later instead. The third letter was to tell me about another appointment which I can't make cos of another hospital appointment the same day. What did I tell you.
Total waste of NHS money and resources!!!!!
30 MAY 2008
at home, but shouldn't be....!
I've not seen Mr B for quite a while and I was asked when my next appointment was and I realised I haven't got one! So I emailed his Secretary at Stanmore and asked.
Back came the reply "Well you should've come yesterday and you've been discharged". No warning, nothing. I didn't even get a letter telling me I had an appointment so how can I turn up for something I don't know I've got??!?!?!?!
It wasn't his secretaries fault and she is always ecellent at trying to sort things out and make sure things happen as they should do. She said it'd happened more than once lately so I wasn't on my own!
After a few phone calls and speaking to people who patently knew who I needed to speak to but were being awkward I finally managed to get re-booked back in. I've never missed an appointment before, only when they were cancelled by the hospital and I wasn't told, so why would I just not turn up?!?!?!
The NHS drives me to distraction sometimes. It really does.
Stress, Karen, stress....keep it low, your kidneys will suffer otherwise. Not much chance of that is there?!?!?!
1, 2, 3, 4, 5, 6, 7, 8, 9, 20....thousand....!!! :-)
Whilst the good news with the NHS seems to keep coming I thought I'd try to make an appointment to see Dr W - well do I need to tell you I didn't have much luck? Nope I thought not. I had to explain the situation and the lady knows my history and the problems I have and was helpful and squeezed me in to Monday (I wanted to go the same day as John as he could give me a lift then which would save my poor legs).
My legs have been suffering lately since I've been off the extra painkillers. I didn't think they did that much to be honest, but it's only since I've been off them I realise how much they have been helping. The TENS machine and pain patches have been in daily use as well. Sometimes I do wonder if all this pain is worth it.
Several things have happened behind the scenes lately and to say I'm fed up is the understatement of the year. You know when you think you know someone and you can trust them and they tell you they are being 100% honest with you - then something happens and you realise it wasn't quite as it seemed? It's a bit like a stab in the back and then they don't seem to be the person you thought you knew. It's sad and is a big loss in my life but hey what can I say. I think the 'silence' is saying a lot and if only they realised how much I miss that support and care - and I thought I was helping them too - I wonder if it would make a difference if they knew? Something I'll never know.
Family hassles are not making it easy either. I seem to be having to walk on eggshells all the time and I can't do right for doing wrong. I know we've all got our own health problems but sometimes it feels like I'm being ganged up on and it's not a nice feeling. You think you would automatically get support from family but it's not always the case is it - sometimes you feel so alone with this. It's strange. At the moment I could sit here and cry my eyes out.
Once again things have all come together at the wrong time and it's really got to me. The stress and hassle aren't helping with the health but there's nothing I can do about it really. It's not as though I can have a big bottle of wine and forget all about it can I.......?!?!?!
Send me something nice to cheer me up guys - please?!?!?