The Furry Monkey

04 march 2010
Dr c, uch, london

It's that time again, the check up with Dr C (or her Registrars). I wasn't sure transport was going to arrive as it was very late. However I reluctantly agreed to phone after hassle from Mum and John (strange they don't do what THEY are supposed to do, but are seemingly good at telling me!). Anyway it turns out the booking was made and it's just going to arrive when it arrives.

After an anxious wait, it looked like the car had the wrong address again, they called into a house at the beginning of the road, which they've done before. Then they drove to another one, and another. We tried to get their attention but they didn't see us (despite two of us standing and waving like lunatics!).

Finally they came back up the road (no escape you see!) and I flagged them down. I said "Are you from UCH Hospital Transport? I saw you going in different houses and thought you couldn't find me".

"No" she replied "I'm the Betterware lady and was trying to get people who were in!".

OOPS!!! Big mistake then. So I sheepishly went back in and sat down again. All deflated. Still not convinced they were coming.

Then, at last, they arrived. I'd not met this guy before, boy did he like to talk! Sometimes that is better, it makes the journey quicker depending on the subject matter we're talking about of course. Good job this was quite interesting!

UCH was in sight now, and it was time to go to the Clinic. I had a long'ish wait, and was reading my book all on patients being killed in a hospital! Good reading choice huh. It's taking a while to read this one as I mainly read it when at hospital clinics.

My name was then called, so I trotted off behind the Registrar to the Consulting Room. It was a Registrar this time, but that's OK. Dr C came out and said "Oh, you're not Patient X" and then "Hello Karen, how are you?". I replied and then followed the Registrar in.

He read through some of my notes and asked how I was. I said about the continual pain and he asked to examine me. I didn't have to take my coat off or anything so am surprised he managed to examine me with that on. I did ask if he wanted it taken off and he said no. So I'm not totally convinced he did a thorough examination through a thick coat! Never mind, it's not as though there's any new problems at the moment so I'm not too concerned about it.

He asked about the pain and I said "Well, you can examine my leg, but if you touch it more than lightly, then I might thump you!". So he was careful and to start with was worried about how painful it was. He asked if it was a new pain, and I said I'd had it ever since the radiotherapy and its never gone away. He asked me to confirm that and then seemed OK that it was a long standing pain. Well not OK as such, as I shouldn't have pain should I, but that it wasn't new meant it wasn't a worry as such. If that makes sense to you!

I said I'd been on a Pain Management Course and he told me that was good and not many get to go on them, so learn all I could from it, which I have learnt new things to help deal with the pain. As pain isn't a physical thing you can see, most people think I look fine and not much wrong apart from the walking stick and the compression stockings which might give some people a clue.

So I look fine, but it's pain 24/7 which no one can see. It's not going to change, so as long as I take my meds then it at least keeps some of it at bay. I know the meds are working (although sometimes you don't think they are!) because if I forget to take them at anytime then the extra pain gives me a BIG WAKE UP CALL!!!!!! Not nice at all I can tell you.

 

05 march 2010
dr e, local gp surgery

We've been having MAJOR problems trying to get dressings for John's leg lately, also medication too. We're beginning to wonder if it's just us but when the Pharmacy told us some guy is only allowed 5 tablets at a time we're not worrying too much about it. The main thing is the dressings.

Without them John can't even get out of bed. It's not a nice subject, but basically his leg leaks all over the place from the Pyoderma Gangrenosum open wounds (he has two, both similar size, the dressings are 11 x 15 cm and they are too small so he has to cut them).

Anyway, we were told he could only have 20 dressings at a time now, when he used to get 250+. Not good huh. When he uses 9+ a day, this means it's two days supply. Also Dr E wanted a District Nurse to re-assess his dressings. We know they are not cheap but when nothing else works or even makes it worse, then you have to have what works.

After waiting two days, and having NO dressings, we'd heard nothing from the District Nurses. Mind you, after they were wronly treating it for over a year, and some of them even saw me and were hopeless when I was having my dressings done (I even had to show some of them how to dress a PICC line!!!) then it didn't inspire confidence and I was pleased in one way that they hadn't showed up!

UPDATE: 29 March 2010
Still NO sign of the District Nurse, so they don't do what the Doctors request either!!

As there was no appointments for Dr E, only emergency ones, we made an emergency one! We would have to go back as emergency surgery wasn't until later in the day but hey, if that's what you have to do, then that's what you have to do!

Back at the GP now and we're waiting to go in. As it's emergency appointments only and the Doctors are standing around talking with each other, WHY OH WHY do we have to wait 20 minutes for our appointment! There was one other person in the waiting room and he was called in so there was only us so what's going on???

Well obviously nothing! Nothing new there then. Does anyone else have these problems with their GP Surgery? We would change surgeries like a shot, but they have our history and to go through all that with another Doctor, well, we'd need a month of appointments for us!

So patient patient's waiting paid off and we finally got called in. John and I walked in and sat down, the door was covered by us two and there was no escape! HA HA HA!

Sounds like a pantomime there doesn't it. Like an evil character about to murder someone. Well it could turn out true if we have more hassle. Stress is not good for anyone, least of all someone with medical problems already, so this was making it worse for both of us. Heaven knows what our Blood Pressure is like at the moment, I think the mercury would go through the roof and explode if they tried it.

The Dr smiles and say's "I'm not refusing to sign them off" as he holds up his hands as we both must have looked pretty grim and not impressed with him at all. He's not our normal GP but he holds the purse strings we think.

It's eating into his profit, and his bonus, and it shows no signs of going, so is going to continue to cost money.

"Well if you're not refusing to sign them off, what IS the problem then?" asks John.

Turns out the first thing he says is "Well they are expensive and it costs me over £7000 a year for them - that's a lot for one patient". Of course it is, but if YOU, the local PCT and a CONSULTANT can't find out how to solve it what can we do????

Not a lot really. John dresses his own leg three times a day, this saves a District Nurse coming out three times a day, seven days a week. A HUGE SAVING there for him. If that's the way he wants to do it, then we'll have a Nurse come out. That will hit him right in the pocket where it hurts most!!!!!!!!!!!!

As you can tell we are pretty angry about this, it's bad enough no one can help him, but when you're not even getting two days of dressings then it doesn't help at all does it.

Finally, after showing the Dr his leg (he's never even seen John's leg to see what it's like!) then he realised what it is like and how much it takes to dress the wounds each day. He relented and said he'd make it a repeat item and we could have 200 at a time. How very generous of you!

At the end of the consultation, I then asked "If someone in your family asked if you'd cut their leg off in the morning, it's not nice, would you have something that might help with the pain as he's got nothing from the Hospital and it upsets me to see him like that". To the point, but polite I thought.

So now, he's got some strong painkillers to try and see if it helps ease at least some of the pain. I know how bad pain is and how wearing it can be, having bone pains and other problems. John already has RA so lives with pain all the time, so to say this, means it's a lot worse and not something he wants to put up with all the time. I don't blame him. Do you?

 

10 march 2010
pull.....fire.......

OK. So this is a strange one, or it sounds like it. However a simple explanation follows!

John has for a long time now, liked the idea of Clay Pigeon Shooting, but never did anything about it. As it was his birthday the other day, I decided to do something about it....and booked a "Event Adventure" for both of us to try!

I explained we're both Registered Disabled and have problems with our fingers. Would this make it impossible I asked? No came back the reply, we have chairs for you to sit on, you can take breaks whenever you like, you can shoot sitting down if need be, and we already have disabled Team Members and events for disabled people. So I made a quick decision and booked it!

Now it's the day to go and John says he's not excited. He doesn't get excited about anything much. I thought this was a good idea to try as he's always liked the idea, and never done anything about it, and it's something we can both do without too many problems hopefully.

We arrived and met our instructor, Dawn. Yes a woman! I later found out she's an Olympic Shooter too and we were really impressed with the way she took it easy and said if we have any problems to shout and we could take breaks. She made sure we took it in turns and had a long break in between and didn't want to tire us out. This was really good and is something we can both do without incurring too much extra pain and more importantly, something we can enjoy doing. Good huh!

I was no good at the Right to Left shooting much, I hit some but not as many as I did with the straight ups ones. John then had a go and was better than me at the Right to Left.

After another break, he had a go at the Left to Right, and he didn't hit them. They were also faster and higher up as well. I didn't think I had a chance at this. However....I was totally amazed, and so was Dawn, when I hit nearly every one! How good is that????? I was well pleased!

We managed to hit more than we missed I think and Dawn said it was good for a first attempt as neither of us had shot before. John had a 12 bore shotgun and mine was a smaller one (being a laydeeee!).

We left there on a high and had thoroughly enjoyed ourselves! Mind you, we were both shattered afterwards and she said we would be. It's not something we normally do, so expect to be tired she said! She wasn't wrong the next day!

Still, it's good to know it's something we can try again and can even do sitting down if needed. There are Olympic disabled shooters too so why not. I was pleased and so was John with the fun it was. It totally made us forget pain and Doctors and problems for a while, which in my book, can only be a good thing!

Makes a good conversation to say "Oh we went Clay Pigeon Shooting the other day" instead of "We went to another hospital". Wonderful. Totally enjoyed it and could recommend it to anyone, able bodied or disabled. Good fun! Go for it if you get the chance.

 

11 march 2010
at long last........

Finally, after saying she should go to the Doc's, Mum has listened (more to John than me) and made an appointment see about her constant cough and chesty sounds. Turns out she has Bronchitis and has now got antibiotics. She's also seen the Diabetic Nurse and they are pleased too. Her numbers are looking good (despite eating chocolate!).

She mentioned about her broken machine and she's been given a new one of those. She only has to do a test once a month now, but was concerned about getting a repeat prescription, despite having 30+ lancets in the initial 'Goody Bag' which should last years.

The Nurse asked different questions and asked me some too. I was honest, but I don't think it went down too well. The Nurse said she should listen to me more, and I should be a Nurse in their clinic as everything I said was correct! Humphhh...if only they would listen huh. No chance.

Anyway on leaving and after getting a glared look from Mum, I said to the Nurse, "It might be my brother coming next time not me, I don't think it was appreciated when you said I was right". She smiled and winked at me. I think she see's this a lot with patients don't you....!!!

Anyway I'm not going to say anymore, before I get in more trouble.

 

13 march 2010
oh no, what's happening to me....

I really don't know what's going on. I feel absolutely awful and have every part of me aching and painful. Headache, backache, mouthache, arm ache, leg ache, you name it and it aches.

A friend had arranged to come over today as I've not seen her in ages so there I was sitting in the chair with a blanket on me waiting for her and her fiancee to arrive. I didn't want to cancel it, but was tempted as I was feeling so rough.

Mind you, in the end she didn't arrive, so I just went to bed early and hoped that I'd feel better in the morning. I hate feeling like this, and of course no sympathy in this house.

 

14 march 2010
another day....more aches...

Well I'm feeling a little better but not much. No one asked me how I was feeling, it would be nice to have some sympathy for a change. Even just a small amount and then back to normal.

Anyway, as there was none I had to get one with things as usual and keep going. What's that expression? Keep Calm and Carry On. Yep, that's me!

I got a Mothers Day card from Domi today. Now I know it sounds odd getting a card from the cat, but hey, I don't have kids, so she's my kid instead. Of course it reminded me how much I miss my little man Bertie, but Domi was kind and remembered me which was nice.

 

16 march 2010
another blood test......

Yet another stabbing. John and I had an appointment about 1 hour apart but we knew she'd take us in together as it's going to save her time later on.

John's test was easy, found a vein, put the needle in, blood out. Done.

Mine was not so easy and it took a while to find a vein, then it didn't want to come out, it's shy you see and doesn't want to go out in daylight! LOL!

Now all we have to do is wait for the results and see what the kidneys are doing this time. More waiting.

I've also been planting out some bulbs into pots in memory of Bertie. Auntie Rita gave them to me for Christmas and it was lovely that someone remembered him as well as me. It's taken a while as we've had snow and frosts and not been able to get to the Garden Centre, but we did recently and I took my chance.

I knew I was going to suffer after doing it, but it was worth it. I took some photos and will post them here soon for you to see. Bit boring with just earth but at least we'll have something in a few weeks.

I got my trusty seat out again and made sure I had all the tools round me before I started so less hassle and just took my time. It takes me four times as long but I enjoy it being out in the open air for a change.

I've also been crafting too. It's happening in fits and starts but I've had loads of extra pains lately so not been doing so much as it hurts too much. I've had my pain patches on and extra painkillers and it's still not stopping it, I know deep down it won't but I live in hope still. I'll never learn will I....?!?!?!

 

23 march 2010
local gp surgery, follow up appointment

This is to follow up the appointment where I was told my kidneys are failing again. I've got a copy of the Blood Test Report and according to Dr X who told me about the eGFR they are not looking good as far as I can see.

She said that they hadn't improved much, although they were a smidgen up which can only be good can't it.

Now I don't know exactly what is wrong, why it's happening or how to stop it happening, so all I can do at the moment is wait for my appointment with the Renal Specialist and see what he says.

I remember from the last time I saw him, he said, "Karen, you are a lovely patient, but I don't really want to see you again, in the nicest possible way of course!". Now he'll be seeing me again!

So now it's another waiting game.