Another two appointments, one after the other at UCH. It's a shame in one way that there will new hospital to move to, I will miss this as I know it so well. I will be the newbie when it moves!

My name was called and this lady Doctor showed me to the room (sorry I can't remember her name!). We had a chat about how the leg was and the pain. He asked about the numbness in the fingers so I explained that there was other pains lower down and it was like someone stabbing me. Also it eased a bit if I "shook" my hand down - hard to describe. It is numb in the mornings when I get out of bed and also I have a lack of pressure in that hand too.

They got me to do some tests there and said that it sounds like "Carpal Tunnel Syndrome" and I'd need to see my GP and get it checked out. That'd be a unique thing - I've never seen my GP through all my treatment. They said that annoyed them that there was no contact. I also though it strange, but "ours is not to reason why" and all that stuff.

They also said that there are a few people who would like to work with me on the "emotional" side of cancer, counselling and psychological. I'm quite keen to start that as I never had anyone official to speak to during my treatment, and obviously there are things that you can't say to your close family. It's also difficult to speak to friends as well. That old saying "you can't understand unless you've been through it" is true. No one knows how it feels, they might think they do but they don't. I've now got to wait until I hear from this other Doctor who will work with me.

Dr Chris asked me how my work was going with the CancerVOICES (I mentioned I was going to help with some articles for the national magazine) so I said that I had been "Assistant Editor" and that although it had shattered me totally, I had enjoyed it a lot. I had also attended a "Palliative Care Launch Workshop" which was very positive to see all the DN's and other medical staff so enthused about it. When my time comes I know I will be in safe hands and can "die where I want to with dignity".

He was so pleased and would like a copy of the magazine when it is published. I also mentioned I'd been asked if I'd be a patient representative for the "Supportive and Palliative Network". He was so happy about that and said "you've got to do that - you'd be so good at it!". They want me on their team he said, I replied "you'll have to fight it out between you" - what it is to be in demand. Shame it's not paid though!

I was then sent on my way back to the Waiting Room (not far only down some steps - yes more steps!). It didn't take long and I was called to see Jan - and can you believe it - up the same steps to another room. Now why couldn't they have some seats up there to save going up and down?!

Anyway I was soon back upstairs and sitting with Jan. She asked how the "Nora Batty" stocking was going. It is actually quite strong and painful. It's difficult to get on and off, and when it's been on all day your leg starts to ache in the afternoon/evening time. Apart from that it's fine I said!

She checked it out and said that it may be a bit too long as it was creating a band around the top of the leg just under the knee. I already have one around the middle of the leg which the radiotherapy left me with and don't fancy any more of them!! So a smaller one is going to be ordered. Also in the new "shimmery summer" colour. I did have a choice - there was "cat vomit", "old lady brown", "funeral black" - all sorts of variations. I hope I've remembered the names correctly. Or there was the new "shimmery summer" which is a lighter colour. So I went for that one instead.

Luckily she didn't ask me to take it off as I'd have a real problem getting it back on. I was shown another contraption which may help to get it on/off but after having a demonstration by Jan we decided it probably wouldn't help and was really meant for ladies with VERY skinny legs (not us!).

I was asked how I was feeling and if I had heard anymore about the CancerVOICES work and said to her the info I had just told Dr Chris and she was also really pleased and asked to have a copy. I would've thought that most hospitals would get a copy but it appears the UCH doesn't - well not those departments anyway! I'm getting extra copies of the magazine so if you'd like a copy, please let me know and I'll send one on to you.

I mentioned that I would be seeing this new Dr regarding counselling and psychology, Jan thinks it is a good idea and it would probably help me, as I'd missed out earlier. I should've had a Macmillan Nurse to talk to, but as you all know was told I couldn't have one and missed out on that. I think that it is a major part of the treatment and should be offered to all patients, no matter where they are in the "cancer journey".

I was initially worried about the "counselling and psychology" bit when they mentioned it. You always think "they think I'm mad and can't cope with this disease" but it's not meant that way. I understand more about it now after having spoken to some others at CancerVOICES meetings and groups. I was at one yesterday, an induction day to help promote the group and encourage new members. I missed the initial one at our TACT group so it's good to see what happens there. Anyway I digress, I spoke to some of the patients/carers there and they said they couldn't have coped without it, although at first they were dubious about it. You never know if these things will work until you try them. So I'm going to give it a go.

I'm not mad (well not totally!) and want to understand "how Karen works" - not literally in a job sense, but how I tick and what makes me me if you understand. If you've had counselling and would like to share your thoughts on it, please let me know. I'd be interested in hearing what you think of it and if you think it worked for you.

It's time for my appointment with Dr Cassoni again. I'm not sure what to expect this time after the other "negative reactions" I've had to my asking questions about MY body.

I remember one of the questions I asked concerned a cream made from chilli peppers which good friends recommended to me (thanks Mel and Trevor!). She said she'd never heard of it. However Dr Chris mentioned it before as a treatment which may help with my leg pains. So one Dr knows and one Dr doesn't. I do admit to being a bit "concerned" at asking questions this time, but we shall have to see how it goes. Can't do much else can I really.

Anyway I was collected by Grumpy Graham (his words not mine!). We were going to collect another couple on the way but they had already gone by ambulance instead. So it was just me. It was a lovely sunny day in London, almost feeling like summer.

I was a little early so went to get a drink at the Snax Bar, but there were so many people there I decided to get a drink from the machine (cold not hot) and sit in the Clinic Waiting Room. I had arrived just as one clinic ended and the BT Clinic hadn't started yet.

My file was put on the chair outside the consulting room and then was picked up by Dr Cassoni. She then called me in and asked how I was. The usual response is "fine thanks" which most people say without thinking don't they. I was then asked to strip off my outer clothes so she could examine me and she did the usual neck, arm and groin checks. All seemed normal and she asked if I'd had a blood test lately. I hadn't so I was given the blood forms to take to the clinic with me after my appointment.

She asked me if I had any questions, which surprised me. I had taken a few on a list with me so got them out and asked a few. Nothing major but just ones I had in my head at different times. The answers to one question leads to others sometimes.

I was pleased that it was a good consultation and that I wasn't made to feel "stupid" for asking questions as I had been in the past. I feel quite strongly about this, it's one of my "pet hates" that we as patients are made to feel stupid, small, or "obsessive" for asking questions about our own body. I'm sure they would do the same if they were in our position wouldn't they. I know everyone has "off" days but certain things that have been said to me should never have been said to a patient!! Other medical professionals have read my diary and agreed with me!

It's actually a real shame that the Doctors can't feel how we feel so that they could understand more. By speaking to health professionals at the User Group meetings over the past weekend (sorry I'm writing this a while after the event!) they said that although they can imagine how we feel as patients, they never know for certain how it feels and what worries and concerns we have.

After being advised to see my GP, I had to make an appointment. This is not easy in our Practice. They have a new system whereby you make an appointment the same day you want to be seen and are then seen by who ever picks up your records.

As you all know I have a very bad aversion to Dr P after her offhand comments and her recommendation of treatment (so called!). I phoned and said that I would like their help and explained that my Consultant had asked me to see my own GP and that I needed to book in advance as I had to get a bus there. The receptionist I spoke to was very helpful and arranged it for me to see him the next day.

So we got the bus there, which for once was on time and actually arrived!! We sat in the waiting room, being a bit early, and after 1/2 hour my name was called. I explained about my hospital writing and no responses. Also they were surprised that he had never seen me and the answer was that unless they are contacted they don't see patients. This is totally different to other things I heard from patients, who had Doctors ring them and see them at home about their diagnosis and saw them through ALL their treatment. I do feel sad and sometimes angry that I missed out on so much by having to go to London for my chemo/rads treatment. Still not a lot I can do about it, but it has affected me in some ways I won't go into here.

Anyway I explained about my hand and he then said "Carpal Tunnel Syndrome" and then told me he would refer me to an Orthopaedic Specialist who will probably do some nerve tests. He explained that it could be a side effect of the chemo, or it could be nerve damage.

I also asked about some other things whilst there, all to do with the treatment and side effects and he was excellent at answering the questions and is a wonderful Doctor who speaks in a language you can understand unlike a lot of them! No wonder it is difficult to see him, he is so popular at the Practice.

I've now got to wait to get a date for that. Hopefully it will be at a local hospital now so that I can get a bus there. Buses are difficult for me, but they are so much cheaper than a taxi so that takes that out of the picture!

I was asked if I would like to attend this conference/seminar/workshops as a patient representative of the TACT Group I belong to. I was a bit concerned about it, as it was for two days and I wasn't sure I could cope with it all to be honest. I get whacked out just with a hospital appointment but thought I'd give it a go.

Angela collected me early on Thursday and we sat in traffic most of the time! We did finally get there though. I was worried that I knew no one there and it was confusing to say the least! We had to do the usual "who we are and where we are from" bit which is a bit of a "groan" in my book (I've never liked doing that bit!). We also had to add something that would make everyone smile. By the time we had gone around the group (loads of people!) I realised that I knew some of the names from my work on the CancerVOICES newsletter. So I did know some people there.

I also met some of the people from the Palliative Launch I had attended previously, and also some people from Macmillan too. It's a good job I have got more confident with time, I used to be so shy. I still am to some respects and prefer to be in the background, but I am getting braver now!

Angela and I attended a Partnership Forum - both of the facilitators I knew from the CV newsletter - and after the initial "who are you bit", I quite enjoyed it. There was a lot of information to be gained and I made quite a few notes (as I always do with my memory!).

There were several items which interest me, User involvement in cancer research priorities; peer review; communication skills for health professionals (very important from what I've experienced!!!) and also genetic issues in cancer. Although this was not totally what I expected it was very interesting to understand how family cancers start in previous generations.

It certainly opened my eyes as to how much work is put into cancer and the patient in the NHS. A lot of this most patients don't see at all and although it is slow to filter through to all parts of the NHS it is encouraging to see what is planned for the future of the NHS.

A lot of our group went to the bar after the dinner, but I was so whacked (I nearly fell asleep before I went down to the dinner!) I went up to bed instead. My fear of not waking in time was lessened by the "wake up call" on the phone, the tv and my mobile phone!! Also being so close to the airport I expected plane noise but there was none. It was so quiet it was hard to get off to sleep! I woke every hour and finally nodded off at 5am only to be noisily woken up by the phone wake up call ringing in my ear.

Whilst at the Dinner last night I met a GP, who happened to work in our area. People from all over the country are here and I end up sitting next to a Doctor from our own area! She was very interesting to talk to and we had a real laugh about different things. It was very unusual for me to talk to a Doctor not in a consulting room and in a social setting.

Now I was just slowly walking down to breakfast, my legs were killing me to be honest and I was totally exhausted. I was glad that I took my bag down with me so that I wouldn't have to go back to collect it. Luckily there was an NHS storage area so I logged it there with them. The breakfast was delicious, fresh fruit and a danish pastry! I know that is not what these conferences are for, but you'd be amazed how many people were comparing the food to other venues and saying how they thought the food and coffee made a conference. There was one upset though. In one of the other groups they had a chocolate fountain - I was intrigued to see that but we didn't get that in our Workshop - it was all they talked about. Fresh fruit, marshmallows all to be dipped in chocolate. I know that I don't eat that much chocolate now, but it sounded like fun to me!

On the second day there was a Question and Answer session with Mike Richards (National Cancer Director). This was one that everyone was keen to go to, there is usually some questions that put him on the spot. Obviously there were a lot of people who had been to many of these conferences and they weren't surprised when he "batted it back in the patients court" in answering several questions.

This was followed by the Chemotherapy Service Review - the next steps. It was very interesting to see what new things are coming down the line with regard to treatments and the medical professionals impression of the "other side of the fence".

After that were two workshops, these were easier as we didn't have to take notes. One was on Linking the Cancer Network Action Plans to local delivery plans. I went with Lorraine who I had met the previous day. She would be working with Tim (one of our Cancer Lead Nurses from the TACT group). Both of us came out of there though disappointed as it wasn't what we thought it would be.

Secondly we went on the Peer Review - What is in it for me? session which was MUCH more interesting and is something that I am going to follow up with Mike, the Patient Representative from the previous day.

Finally there was the Evaluation of the partnership forums from the previous day. This was a synopsis of the groups, and a short talk by each "Leader". Margaret put forward our case very well and she is an excellent ambassador for the CancerVOICES network of groups.

All in all, a very informative two days which gave me a greater understanding of the other side. I am hoping to do a write up of this for our group and also possibly for the CancerVOICES newsletter, so for those of you who receive that - watch out for the Monkey review in there later on!