So what is it I'm working on? Curious?? It all started with the dream of one person who wanted to open a Cancer Information and Support Centre in this area as there is nothing. I met her through the CancerVOICES group I belong to called TACT (Tacling All Cancers Together).

To cut a long story short there was a lot of agreeing to disagree and all that going on, but I said that I would be interested in helping to start it going away from the group. It is a personal interest of mine, who knows one day I may need it myself. I didn't get access to a Centre like this or any support from any cancer organisation when I was diagnosed and know how much it is needed.

So a group of six of us have had a few meetings and have put together a presentation and are going to hold an Awareness Evening at the local hospital. We have sent out over 300 invitations to everyone from MP's through Councillors, PCT Members, Nurses, Consultants, Doctors and not forgetting patients and carers of course.

There is a lot of work to be done, but I'm doing it in batches with lots of breaks when I feel able to. I'm finding it difficult to cope with the fatigue at times. There are also lots of hospital appts too at the moment.

Still it is a good cause that will help cancer patients so is something that has to be done. The government doesn't do anything so it's up to the people to do it instead.

Time to see Dr F again at the Middlesex. After arriving he asked lots of questions about my health generally and then checked my lungs and also my blood pressure. Well they tried, we tried two machines neither of which would work properly and then a manual one but it was giving the highest reading which didn't seem right. The student who was in there observing went out to search for a blood pressure machine, and do you know in a hospital the size of the Middlesex they couldn't find one! Amazing huh.

Eventually one was found and my blood pressure was taken. I expected it to be a bit high after all that but it was fine, nothing extreme which was good.

Dr F also said that when speaking about my appt with Dr C that I seemed upset. He wasn't wrong there. In fact just sitting here reminds me of it and it's not a nice memory. There is no point in going over it, too upsetting and it's not going to change so why bother.

The day has finally come. It's very scary when I think of how many people are coming and it's all come together really well even with the short timescale we had.

We had a last minute hiccup with a presentation on CD, but I copied it all on to our presentation and hoped with everything crossed that it would all work without a technological breakdown - you all know what IT is like don't you. Luckily I was behind a large podium on the stage and all people could see was the top of my head I think. I'd had a busy day at the Beacon Service earlier and only a small break to put the rest of the stuff together.

We had case studies from patients as well as professional presentations from Macmillan Cancer and another Cancer Info & Support Centre. One from a girl whose Mum had breast cancer had so much applause and we were sitting behind the podium with watery eyes as well. Luckily I still pressed the buttons in the right places (next time we're having a lesson in using the techy equipment to make it easier.

Phew, it was such a relief when it was all done and the final applause was made. We've had an excellent response to it, with people saying it was so professional and extremely well thought out and put together. We've got a meeting afterwards to see where we go from here.

Already we've got a Golf Day and a Chill Out Day planned and ready to go. It's going to be hard work for everyone, but personally it will help to take away the thinking of the pain in my legs and places. I'll do it at a slower pace as loads of people have told me to rest and relax more. I know I'm not a well person and it makes me so tired, but it makes me think of other things for a while which helps.

If you'd like to help me in any way, please email me and let me know. Your help would be greatly appreciated, even if you just want to donate some money to our fundraising efforts then please do!

Another appointment in London. This time to see Mr B about the legs and hand I assume. It's not going to happen at the private hospital anymore which is a real shame as you get so used to the nice treatment. It should be standard in a hospital I think, not having to pay to receive it as an extra. Still nothing I can do about that now.

I'm waiting in a HUGE waiting room with loads of other people. It's already running late so it wasn't too bad that my appointment was at 2.30pm and the transport arrived at 2.40pm!!! He was told that as long as I get there by 4pm I could still have my appointment, and we arrived at.......approx 3.45pm - not bad!

I was then called by a Nurse who couldn't even pronounce my name. I know it's only a small thing but it could be a major thing at sometime if a Doctor/Nurse cannot understand English enough to understand the patient. That is when mistakes can be made. I know in our local hospital that this was brought up as a concern from patients and there is now English Language training courses. Can you believe it? How can they even get through an interview if they can't speak English? No wonder things go wrong sometimes.

Anyway I digress. So I saw another Registrar who said I would be seeing Mr B later on. Mr B came through and said "Hi" and "this lady has a brilliant website with over 66000+ hits" and then went to another room. I chatted to this Doctor, and sometimes even his language was hard to understand. Then Mr B came back through and after patting me on the shoulder said "this lady is very special" and back into the other room. The Doctor asked about the Centre we're starting up and I explained about it. Then he told me that I would be seeing both Mr B and Dr C alternately as it was both cancer and orthopaedic. This made me feel better as in the gap in between if something occurred one of them would pick it up.

He then said "well see you next time, Mr B is busy". I think now I should have said something at the time. He is my Consultant and there was other things I wanted to ask. Again if English was a first language it would be easier to ask and know that you are understood. So now I have to have the CT scan on Monday and then wait until December to get the results - how daft is that? Even if they were posted to us it would be something to stop the worry. Even the slightest pain sometimes makes you wonder...... I expect you all understand how that feels.

Usually I'm quite bubbly to the outside world, but you know that advert with the inner self? Well sometimes there is a frightened, scared person inside who doesn't know what to think.

Yet another CT scan, the one where Dr C said she shouldn't make assumptions and sent me for xrays and blood tests as well. It's definitely another appt I'd rather forget and it's not fair that I am made to feel so awful after them.

I think that the Peer Review process that is now taking place will help with the "old school" Doctors. It's also a real shame that some of them think "they're above being trained" when that is exactly what they need. When they were first trained it was right for that time. Things have now moved on and the way you speak to patients has changed as well. However not all of them have realised that.

Phew, that feels a lot better. I'll let you all know what happened after tomorrow. I know I've got to have an injection and that it is always difficult finding veins. Fingers crossed they can find one fairly easily this time.

Back again!

I've now had the CT scan. I remembered about the injection but forgot the gloop you have to drink, yuck! Four glasses of it in an hour. Then it's undress and into those lovely elegant NHS gowns with no back in them and wait to be called. It was a bit embarrassing as my transport driver came up just as I was going to go in. They are supposed to stay downstairs and not go into the treatment area but sadly some of them do and it's not fair to the patients or the nurses who have to answer their questions. They are supposed to wait at the Transport Desk.

Anyway I was taken into my scan and it was quicker as they have got a new machine in there. They had a problem injecting as usual (nothing unexpected from my position lying in the scanner!). I said that the best thing is to go in the middle of the right elbow even though you can't feel it. The Doc said I was calm about it and other patients would be crying by then. "Not me, I'm used to it" I said calmly, "as long as it's less than 20 attempts then I'm fine".

I now know exactly the right angle to tell people to go in with next time which is handy. Me and my non-existent veins.... :-((((

On the way back we had to collect another patient from another hospital, she needed the front seat which was a bit awkward with my non bendy legs but I managed it.

I'm at the Dr's Surgery as I've been having probs with my ears. They keep awake with the noises, you can put up with it during the day but not night time. He told me to try some menthol and then some antibiotics to take. It is easier but not totally gone.

I also asked about a flu jab and yes, I have to have one. Unfortunately the vaccine isn't it but should be at the end of the week and I was to phone in then.