It was a bit of a panic if we would ever make this appointment as there is no John to take us there now. It's good for him of course but a nightmare for us. Still after a few ideas we asked a good friend David who said he would take me. Phew that was a big relief off my mind I can tell you.

I don't know if I've mentioned it to anyone but I've had a bit of pain in my posterior (to put it politely!). I thought it was my hip but wasn't sure. Anyway I was a bit stiff this morning and feel like 104.

So off we went on the trip to London. I'd got a route planned just in case something didn't look familiar as David wasn't sure about the route. We had a nice journey in, not too much traffic which is great. Even the M25 wasn't bad and that's saying something! We got there about 20 minutes early but better early than late. I've been early before and he's called me in so fingers crossed. My appointment is 12.30pm.

It's now 12.50 and we're still waiting. We've only got an hour on the meter and it's getting nearer. At last the woman in front of me finished and it was "Young Karen's" turn.

I hobbled in and sat down, and he said "You're looking well", "Yes not bad" I said. He'd noticed I was in pain and asked me about it. I said it was just a pain in what I thought was the hip, so he said "stand up and turn around towards Mum". So I stood up and turned. He asked where it hurt and I showed him, he then prodded from there up towards my spine and ouch did that hurt. I was flinching like crazy.

"Well" he said "with a lymphoma we don't mess around with an xray with lower back pain, we go straight in with an MRI - I'll get one arranged". I just thought it was a bit of hip pain as I thought I'd been walking oddly because of the other leg. Appears not. I'm not sure what it is, maybe arthritis who knows. John said it can't move upwards that quickly and he's the expert on arthritis. So who knows....any ideas email me!

I thought, in for a penny in for a pound and asked about my wrist. I said I'd called his secretary and she'd not returned my call (not for the first time either!!!). I then had to make an appointment with another specialist. So he asked what was wrong and sat there and looked at my wrist and felt it all over. He has nice soft hands, must be all that soap from the operations!

After examining it and holding my hand in certain ways he said it is a small operation, slice it open and release the tension that is causing the problem (carpal tunnel syndrome to give it it's proper title). This would all be under a local.

You all know my reaction now, "a local, that's when I'm awake isn't it?". Yep, awake when he slices my wrist. Yuck....!! I'm not sure about that I said. Why not he replied? Why do you think!!! I've had enough needles, drips, cuts, bleeding, pain, agony, illness, feeling crap to last me a lifetime!!!

Anyway I asked if it was like the biopsy on the bone in my leg and he said yes. So I thought about it and said OK. He said the worst part is the local anaesthetic. I know that from experience. Now I'm going to have a carpal tunnel op on my hand - it's going to be weird with him operating on me when I'm awake.

I hope you've got a steady hand on that day Mr Briggs, no wild parties beforehand please - I want it to all go to plan. If my wrist is ruined I'll not be able to use the computer and you might as well cut off my arms if I can't use that. Don't worry though I can TRUST YOU as I said!

Whilst you're there can you bring that form completed with you too??? And do as you promised me on the site!

I had a bit of a panic Wednesday and remembered I was supposed to book an appointment with Dr Farnham and Jan when I see Dr Till. I emailed Jan and she quickly responded as usual and said it would be fine. I had phoned to so that I was on the safe side and they said I had an appointment for today booked so I knew all was OK.

It came to 1.45pm, my appt was 2.00pm and still no transport had arrived. I phoned and after loads of transferring and dead lines I spoke to the Transport Desk. After being left on hold AGAIN, I was told there was nothing booked for me today. Great - they told me yesterday it was all OK. Now it wasn't. I was put through to Radiotherapy Desk.

They checked and there was an appointment for NEXT Friday but not today. I wasn't told of that one so didn't know about it. Then Pauline said Dr Till was there. I spoke to him and he had come down to see me, and I was waiting at home to see him, but no transport.

Another mis-communication somewhere...... why is it always me?!?!?!? I was really looking forward to this appointment too and now it wouldn't happen. Again I'm like a deflated balloon. It always happens to me doesn't it.

It's now 4.00pm and I'm still waiting to hear. Obviously I'm not going this week then. Nightmare. My back is aching like crazy and I'm miffed to have missed my appointment again. Still as you all know, it happens quite often so I should be used to it by now. Somehow you never do get used to it though.

Well I'm going to have an early night tonight with another good book I've just started (Mr Briggs asked what it was and he wrote it down so it must've sounded good to him! Yes it's another murder book - what else do I read?!?!).

I'm off to my CancerVOICES group tomorrow...unless something happens with that too....

Speak to you all later.

UPDATE: 4.36pm - just been phoned by Dr Till. He said that my appointment had been cancelled yesterday. Was it me? I don't think so or I wouldn't be waiting to go today! Anyhow it seems that it was cancelled, the Nursing Manager is trying to find out who cancelled it. I doubt that they ever will - although there should be the initials of the person who cancelled the booking on the system - I'll have to remember that and ask just out of curiosity.

There is also a booking in there for next week which I know nothing about! So we're keeping that one which has transport booked against it already. Hmm, I'm usually an optimist but I could be changing into a pessimist now!

We shall see next week....till then keep those eyes peeled (anyone else remember that?!?!). Oh dear showing my age now! BFN -x-

A small panic again as it got to 2.00pm and still no one had arrived. Then "ding-dong" - no not Leslie Phillips at the door but a young man who had come to take me to the Hospital. We had a good chat in the car, as I usually do, about all sorts of things.

There were no other patients to collect so it was a straight run up there, apart from the traffic on the motorway of course which is the norm lately.

I got to the Clinic and saw Pauline. She said about the appointment and then gave me a card. It wasn't the usual Hospital Appointment Card though and I opened it and it had a gorgeous flower photo in the middle and I opened it and it was a "Sorry Karen, it was me card" - it was the first ever time I had known Pauline to make a mistake in a booking. It was easy done as she had two screens open on the PC and clicked on my hospital number and then went to the other patient and cancelled his booking, not realising that it was still connected to my record. It is a lovely card and is still up now. A wonderful thought by a wonderful person to make me feel better. It's easy done as I said and we are all human after all. Computers make the really foul mistakes not us - LOL!!

So Pauline, thank you for that - you made my day. She also said "we are supposed to be here to make sure that everything goes smoothly for you, the patient, and I am so sorry it's happened to you". Now if only everyone thought like that it would all go like clockwork.

A lovely start to my appointment that afternoon. Dr Till then came and introduced himself to me and we went off to a ground floor meeting room (much easier for me than stairs - less pain in the legs!). I won't discuss what went on in the meeting here, after all it is confidential to me and him only and it shall stay that way unless I decide to share it with you in any way. Suffice to say that he and I are going to check out a few things and then after his holiday he will come back to me with an appointment to discuss things further.

After that appointment I saw Jan in Reception but sadly she was too fully booked to see me that day and another appointment would have to be arranged. Another appointment in my social diary!

Whilst undergoing my treatment at the Middlesex, which mostly was very good - I was just ferried up there, had my treatment, ferried back and that was it. There was no back up support or help when I needed it. Basically I was left alone and it's hard enough dealing with a cancer diagnosis but to be just left to get on with it has probably not helped me in a lot of ways. Even just someone to talk to, in a medical profession would have helped. A lot of questions were going on in my head, and consequently when I saw my Consultant I had a long list of them which had been gathering up since my last appointment with her.

This might have given the impression that was all I thought about, which is the wrong one to interpret. There is never enough time to discuss everything and subsequently it gives the wrong impression.

I have since been told that I need support from diagnosis until I die, whether it is from the PBNHL or from a number 441 bus I just didn't see. No one knows do they. It is something that we all need to cope even if we think we're doing OK with it all.

So, with the help of Angela and Frances and the involvement of my GP, I have, AT LAST, got an appointment with a local'ish specialist centre for people dealing with cancer and life-changing illnesses.

A lovely volunteer called Don collected me and drove me to the Centre. I was then taken to an Assessment Meeting with Susanne who after talking to me, would help me decide what plan of action is required next.

Several things were mentioned and I am going to some initial groups to see if it is what I want to follow up with. It might or might not be the right thing for me at this time, but I want to give it a go and find out. Everyone else I speak to has already had some form of this support, APART from me. Now it is MY turn and I am going to get as much out of it as I can.

So if anyone would like to comment on their back up support, just email me.

Another early start, 5.30am! This time it is for my operation on my wrist (carpal tunnel syndrome). At the time it was just mentioned because I couldn't get a reply from his Secretary after leaving voicemail messages and I had to make an appointment with another specialist.

He then examined my wrist as I mentioned before and said he'd do an operation on it and release the tension. So it is tomorrow. Nothing else was mentioned, for example, I've since wondered if it will put me out of action keyboard wise for any length of time? are there any side effects? what if it doesn't work? are there any remaining symptoms that will stay with me?

I suppose I'll have to ask before I "go down" for the op. So if it goes quiet for a while, please bear with me and I'll be back as soon as I can.

Speak to you all again as soon as I can!

THE OPERATION!!

As I said 5.30am start but we got there. A little late but no problem. I knew the procedure and was in the Philip Newman ward again (I wonder if it's anything to do with Kevin Newman who I first saw with my leg?!). Anyway I was going through the usual procedures. Filling in the forms, taking off my necklace and earrings, putting on the silly gown, waiting to see Mr B.

He duly arrived and I tried to ask questions but he wanted me to sign the form. I could understand but I wanted to ask, you never seem to be allowed time to ask, even privately which is not good. I asked if I could take my camera and he said "it's not normally allowed." Oh well, at least I'd tried. Then he said "but take it with you and we'll see".

I was then called down and had to get on the bed. I would be awake and had to transfer to one of the operating table beds. I was then wheeled in and saw Mr B. The nurse took the camera and I explained how to use it and it was all systems go. My arm was covered in iodine and then I was connected to a couple of machines. A tourniquet was applied (tightly!) and another machine was used to tighten it even further.

Mr B spoke about my website and told them all to check it out. Of course, it's brilliant isn't it everyone! I could see the reflection in the ceiling and it felt weird. He'd done the local and it was I admit, very painful when it was going in. I think I broke the nurses fingers I held them so tightly!!!

He was talking to me and I could feel the sensation of something cutting but nothing else. Then it was all over!! 15 mins roughly and it was done. I was taken to recovery and then had a cup of coffee!! I saw the anaesthetist who put me out for my bone biopsy and she remembered me.

My arm was put in a sling whilst I was in the bed and held upright. After a short time I was taken back to the ward. I saw a couple of nurses there who I saw last time and they remembered me too. I'm just thinking of what Mr B said and that I'm a lovely patient.... ;-)

I had numb fingers which they were a bit concerned about but Mr B came in after a while and spoke to me. He said they would be for 12 hours approx. It had gone well and he said he loves doing that operation but doesn't do it that often now. So I was his memory guinea pig!

I was then allowed to go, and packed up my belongings and toddled off again. It's difficult to get dressed I can tell you.

You'll have to scuse the tatty txt typing but my hand/wrist is REALLY sore. Am unable to do much at all really - so hard with only 1 arm!

I'll fill u in on gory details later when I can type better. ne1 know of ne free s/w that you can talk & it types 4u? Makes yr neck ache. Has ne1 had this op & can tell me what happens afterwards? Of course as usual, no info given 2 me - and this was private (only 2 wks left on it now tho' - I'm gonna miss it big time I know!!). It's not good really, u'd think u'd at least b given a list of do's and don'ts wouldn't u!!!

I really think these docs need 2 b told where they r going wrong and how 2 treat us as people 1st and hospital numbers 2nd!!!

Well can't do this 4 long so will love u and leave u 4 now. Byeeeeee!!!

PS. I'll b adding in a new page - cts in glorious technicolour!!!