Don't panic - it's not for me this time. I just had to put a bit in here about John. He finally had his appointment about his knee. He has been walking (if you can call it walking!) on crutches for a few months now.

Anyway he went in and there were four people sitting there, amongst them his usual consultant Dr I. They examined his knee and got his scans up on the light box. Well said the top doc "well basically he's bu....." and John's Consultant Dr I said "basically it's no good!". He said that they couldn't do anything else, then went on to say "but replace his knee". Although they said he's very young to have it done (only 36) but his knee is totally gone with the RA. They said it would need to be done again in his 50's as it only lasts 15 yrs approx. John already knows this and said it will be fine.

They are going to reduce his steroids a bit to help him lose some weight (better for the new knee anyway) and then he can have the op. He is like a new person, very happy at the moment. He has wanted this op for so long. It's really good news. Although he said "so when I have my op and am in hospital, who is going to drive you to see me and do the shopping and stuff????" - a good point, but we'll think of that nearer the time. We're so pleased he's getting it done at last. Some good news for a change!

Perhaps the Year of the Monkey is a good omen and we're going to be on the up and up now! Hope so.

After John's good news yesterday we're on a high and on our way to London.

I mentioned to Mr Briggs that I had seen Dr C the previous week and she wanted me to have MRI scans and x-rays of both legs this time. He filled in the forms and went through a checklist so that I can have an MRI scan. It is a new state of the art imaging centre in Marylebone, not far from Mr Briggs and Harley Street. It is a brilliant machine going by their brochure - does everything apart from make the tea! (Or coffee in my case!).

I had to arrange a date with Janice for the scan. It wasn't going to be easy as I would have to make my own way there. However she phoned them up as I was already in London and they could slot me in today at 2pm. So off we went to find them. We had to do a sort of illegal reverse to get into the road and on an available meter, but we made it safely! There was no one coming so it was fine to do it.

The scan was very good, although the gown was - how shall we say - cosy around the neck area! At least this place provides you with a dressing gown as well to cover your modesty. They asked if I'd had an MRI scan before. Just a few I said.

I had my legs taped together and also strapped down under a locking plastic holder. I then had to go upstairs (well in the lift actually) to the x-ray machine. I had two x-rays and then the lady said "can you go on your side we need a side shot" and I turned over and put my knee down as far as I could. I said the left doesn't move so well but the right is better. She said "looks like you've done it before?" she's not wrong there is she.

So I had four x-rays taken and the MRI scans (about 8 in total I think).

Just got to add that on Monday I phoned Mr B's sec to ask about the scans and when he wanted to see me. She said I would be called either during Monday evening clinic or Tuesday morning. I didn't have any phone calls so on Wednesday I called again (perhaps I should send MY BILL in for phone calls chasing them!). I was told he would phone me on Thursday during clinic.

So now it is Thursday evening and guess what....no phone call. Amazing huh.

These consultants get paid £100 for 5-10 mins (if you're lucky!) and they can't even phone you when they say they will.

They even told me the new policy is that they don't send off the documents to the health company now, it is down to us the patient. So out of the £100 they get, which if you add it up works out to what....say six patients per hour at 10 mins/hr is £600, times by 9 hours per day = £5400!!! This doesn't include any evening clinics or operations either. That is extra on top.

So they can't afford a 20p stamp. How hard it must be for them. Imagine trying to live a daily existence without money and see what it is like in the REAL world.

Perhaps there is a consultant out there who would like to tell me the other side of the story. How DO YOU warrant those charges?

I know you have to pay for offices and staff but when you're earning megabucks that is going some!

Now I've got that off my chest I feel a lot better. Thanks.

Well before I start on my diary entry for today, let me just update you as to who these Docs are who I mention. I know it gets confusing so this may help.

• Pauline is an extremely efficient administrator/receptionist at UCH in London who I have a good laugh with - she arranges everything to do with our appointments, and it's NOT her fault the transport doesn't arrive - I know she fills in the forms!!
• Dr C - is Doctor Anna Cassoni, my Bone Tumour Doc at UCH in London
• Mr B - is Mr Tim Briggs, my Bone Consultant (whilst my medical cover is still valid only!)
• Dr F - is Doctor Chris Farnham, my Palliative Pain Care Doc at UCH in London
• Dr N - is Doctor A Nikapota, a Registrar of Dr Cassoni
• Jan Eversfield is my Lymphoedema Specialist Nurse at UCH in London
• Dr B - is Doctor Maggie Bissett (hope the name is spelt right!) a colleague of Dr F who I've seen a couple of times now and answers my questions and gets me to really think how I feel and can say it without upsetting anyone like close family (thanks for today it helps to talk sometimes!)
  

The list above is in no particular order, just as I remember them! Just hope I haven't forgotten anyone now.

Anyway what happened today? Well I was thinking transport wasn't going to arrive, my appointment was 2pm and at 1.10pm no transport had arrived. I was just saying to the cats (Mum and John had gone out) "I think that they've forgotten me again" when the doorbell rang.

There was already two others in the car so I had to sit in the back, this is not easy for me and the driver was a tall guy so his seat was well back. I was pleased when we'd arrived so I could stretch my legs again...phew!

It was interesting in the car as there was a lovely chatty guy there who has led an interesting life in the US Military and UK Military (amongst other things!) and is also involved with the "Fathers For Justice" team or is it "Justice For Fathers"? Sorry I can't remember. You know the guys who climbed up on to tall landmark places in London dressed as Superman or Spiderman. He didn't get up there (I asked!) as he walks with a stick just like me. We had a varied conversation all the way up to London.

So when we got to the clinic he was in front of me, and Pauline said "what a great colour!" pointing to my nail varnish! "Of course" he said "nail polish is more important!" in a jokey way. :-)))) He's right it's of major importance!!

Anyway after a small wait I was called in and saw Dr B (Maggie). We had a long talk about all things related to my side effects, my leg, how I feel, the treatment, the pain. It's good to talk to someone else. As I never had a Macmillan Nurse I feel I miss out on the "talking things through" that I sometimes need. Dr C said Macmillan Nurses only deal with patients currently undergoing treatment. (I know different, I've spoken to Macmillan so don't worry!). I don't feel I need a full time Macmillan Nurse, just someone to talk to occasionally about things that are concerning me. I keep meaning to ask how I can talk to someone when I need it, so will write a note to ask at the Cancer Voices meeting on the QT.

I said to Maggie that it is hard to talk to your family. They are too close to you to understand I think. I did ask John once how he felt about my cancer and he said "it's your disease not mine" or words to that effect anyway. So it is difficult to talk to those closest to you, they can get too upset at your thoughts or what you really feel you want to say.

That's why I really DO appreciate all my Furry Monkey friends. I can talk to and say how I really feel at the time. People see the "positive Karen who is coping really well" not the Karen who sits at her computer and cries or lies in bed making the pillow wet with tears in her eyes and waking up with puffy eyes!

She said that a lot of people have more difficulty coping after treatment, or when they have to deal with the day to day side effects and pain of treatment. During treatment you go from one appt to another, then when it finishes you feel alone. I know it's hard to describe that but I hope you understand.

The easiest way is to say that "you can be in a crowded room and feel so alone". You know there are thousands of people out there with the same disease as you, but you feel all alone. No matter how strong people think you are.

Anyway back to the appointment. Maggie examined my legs and said that my right knee was swollen and it could be arthritis or it could be complaining as I'm putting more pressure on that now the other leg is not so good. The bad leg (as I call the left one - it used to be my good leg as I have a red scar on the right one where the school bully pushed me over a wooden beam at school and it went poisonous - now it's the worst of the two!) is still warmish but just keep an eye on it.

I would continue with the gabapentin tabs, and can increase the dosage slowly. It might not make much difference to the pain in the areas around the lumps but we would have to wait and see. She also said about seeing the Lymphoedema Nurse as it is very hard all around the leg and still tender. My lymph system was damaged by the radiotherapy and it could be lymph fluid not moving and hardening up.

Obviously weight was mentioned, but I know that your knees/legs suffer and am working on that. It's slow but at least it's moving in the right direction. I have lost a lot of weight so far, but it's sticking around the same area at the moment. At least it's not going up.

So I now have an appointment with the Lymphoedema Nurse in two weeks time and see what can be done. She said I may have to wear the compression garment now to help get the fluid moving. I just picture Nora Batty and wonder if I will look the same....!!! I can just imagine the comments I will get now....perhaps I shouldn't have told you about that.

I am to keep walking, but if the pain gets bad to stop. I now know that and when I am running around the supermarket (BIG JOKE!!!!) when it's painful I should stop and rest more.

I had to get some more tabs at the Pharmacy. They said 20 mins to wait. I got engrossed in my book and was 10 minutes late back. They made me smile when they said "it'll be another 2 mins"!!! In the end I had to wait nearly 50 mins in total. Not quite the 20 they first said. Never mind, I knew there was no driver waiting and I would be just joining the queue at Transport.

So just as I got to the Desk a guy said something to the fella behind the desk and went away and then I said my name, and he called him back! He was my driver. He said he had to get a guy from Radiotherapy and I sat and waited.

He then returned a few minutes later and said I might as well get in the car all comfy, so this time I had the front seat as I was there first and got the best choice! It was a nice people carrier car and was so comfortable. Then the other guy arrived, it was the chatty guy who we went up with. He said he'd just made a comment about travelling up with two lovely ladies, and there I was in the car for the return journey.

When I got out of the car at home, he said "Karen, I hope you do really well and take care". I said the same and that maybe we would meet again, you never know. Sometimes you do meet others you have previously travelled with.

The lady who we travelled up with said it's so nice to see people happy and chatty, and both of us replied to her with similar answers "it's better than crying!". Some people seem to think that if you have cancer everything is depressing. Quite the opposite with most of the people I've met so far. We are all fighting the same enemy (although in different disguises!) and are happy most of the time. It's better to laugh than cry!

Well that is my saga for today. My next appointment is a dual one - both Palliative Pain and Lymphoedema.

It's getting quite late now, and Bertie is lying here at my feet, snoring away, bless.....!!

Night night everyone.

Well I didn't hear from Mr Briggs. I hoped that by waiting they would call me but didn't. So I called yesterday instead and now have an appointment for today.

So here we are in London again. My legs were aching so much. Typical isn't it, I'd just gone to the "ladies" when my name was called. Mum went in instead to tell him. I don't know what was said when I wasn't there, but he did say "Your Mum says you're in a lot of pain, is that right?" and I answered honestly "Yes, lots".

So he examined both legs, and said there was some wear and tear in both knees, but nothing to worry about at the moment. He pressed down on my left leg, the front of the bone and side, and it hurt like hell and made me whince. He said "well there's nothing else to do...I'm going to stick a needle in there to see what is causing it". If I could dance I would've around his consulting room.

He is going to do a biopsy within the next couple of Saturdays and then see me afterwards for the results. Another biopsy, but he's promised to put me out for this one. Mind you they promised that the last time and they didn't, I was awake for both!

As normally happens my walking stick fell on the floor (usually on a noisy wooden floor with everyone looking!). So he very politely picked it up for me.....and started playing golf with it! If he'd had a golfball it would be through the window I think!

Anyway he made me feel better even though I'm not too keen on another biopsy!

PS. Had a phone call from Janice (his sec) and my appointment is 13th March 2004 for the biopsy. If a cancellation comes up before she will let me know.

Yes, I had a phone call from Janice about my appointment on Tuesday. There is an appointment going on 28-02-04 - do I want it? I've already got a Cancer Voices meeting planned for Saturday which I was quite looking forward to as it has a good agenda planned.

The idea of having a needle stuck in my bones and parts of them taken for analysis - well what would you decide? One side says yes, the other says no.

In the end I decided to have it done earlier, get it over and done with. I'm not too concerned about it (apart from the normal worries!), Mr Briggs will be looking after me (he'd better - or else!!).

So as soon as I am back I'll let you all know. Then it's a case of waiting for the results. Again......!!

I'm back and here to tell you all. I finally got to sleep at 2am, only to be awake at 3am, and then had to get up at 4.30am.....aarghh!!!

Anyway, by 6am we were on our way to Stanmore in the cold and dark. We arrived about 7.15am, after being told to arrive at 7.30am.

I was checked in and shown my room, very nice with satellite tv (only a few channels though!), a fridge, telephone, en-suite shower-room. A nurse arrived and took my details and had the usual weigh-in and blood pressure checks. Again the machine wouldn't work on me so they had to find another one.

A guy in his theatre clothes came in, and then asked me a few questions, he asked if I'd had any other surgery and I mentioned my gallbladder op. He asked who had done it and where and I said, Mr Bearne at St Peters. "He's my old boss!" he said. He's a small guy but he shouts loud. Sounds like most consultants I've heard about! LOL!! He asked which leg it was and then said he was going to mark it up to make sure they operate on the right one. (Scary!). He put a big black arrow on my leg with a marker pen....I thought it'd be an arrow but not with a marker pen! It was huge!! Anyway it'll do the trick thought I. They can't miss that one!

Mr Briggs popped his head around the door, in his very fetching green hat and theatre outfit! No not a tuxedo but those lovely green/blue outfits. Just like jim-jams but no teddy bears on them! LOL!!

He said they would be coming to get me soon, and it was all ready. I asked if he could tell me how they actually do a biopsy, as usually I'm lying flat on the operating table and don't see it. He said "If I tell you, I'll have to kill you". Hmmm not so sure about that! I asked a couple more times and he wouldn't budge! I asked a couple more questions and he was OK about answering those.

So we waited.....and waited....and finally went down to theatre at 1.30pm!!! Yes PM!!! After being there at 7.30AM!!! Again the machine doing my heart monitoring/blood pressure wouldn't work and they guys did a really technical thing, they blew on the cable and then thumped it! I had several attempts at putting the sticky pads on me too. I asked if Mr Briggs was in there and told he was ready.

The guy trying to find a vein said it was difficult (no surprise there!). Then I eventually met the anaesthetist. She said what would happen, took my drug details. She was lovely and patted my arm and said "you've had a tough time of it haven't you?". She's not wrong there. She then said "I wouldn't be doing my job properly if I didn't tell you this, but, you're no Twiggy and there is a risk with the anaesthetic". I knew there is a risk with anyone and said so.

The next thing I remember is waking in the recovery room. I was so sleepy and had an oxygen mask on. They then wheeled me back to the ward. They put another oxygen mask on me, to help wake me as I was still "out of it". Meanwhile Mr Briggs had been back to see Mum and John and told them that it had gone OK, I was alright and in the recovery room. He said he'd see me in 7-10 days time.

The nurses came in and checked my legs as they were sitll cold compared to the rest of me. One of them squeezed my leg and I shouted out, I then explained it is very sore, and the Sister said "oh there's lymphoedema there too. So she said they'd just lightly put their hand on it to check. Phew that's a relief.

I was then observed, and even allowed out of bed as long as I didn't feel "funny" or dizzy at all. At about 7.30pm I was then set free! It wasn't that bad really, a lovely hospital, I wish I could've had my nine weeks there with the Gallbladder problems and operation. I'm sure the comfort aspect goes a long way to helping the recovery!

So, back home again and feeling tired, and achy with a really sore knee/leg. I'm just going to phone for an appointment to see Mr B again. I've got a few questions to ask next time I go so hope to have a decent amount of time with him to get some answers. The more you find the more you need to know sometimes! One thing raises other questions.

Before that though is my combined Lymphoedema Clinic/Pain Clinic appointment in the Middlesex on Friday. Assuming transport arrives of course....tee hee...!!!