The Furry Monkey

01 june 2005
middlesex hospital, mri scan and blood tests

After my appointment with Dr C's registrar he said to keep my MRI appointment and they can be cautious with the lump and also the raised bloods. I took the form to the MRI Reception Desk myself and saw her write TRANSPORT in big red letters on it.

I had the blood forms ready to take with me and also a good book and a drink too. I was ready early this time as last time they came really early for me.

It got to 1.30pm and I thought "they've forgotten me". I've had this happen quite a lot and know that if they've not arrived by then that it is pretty remote that I will be picked up for my appointment.

You have to be ready from 12pm onwards, and can only phone after 2pm if no one has arrived. So after that time I phoned them. I then spent the next 30 minutes on the phone trying to speak to a real person (some hopes!).

I got cut off three times, was put through to the wrong department, spoke to someone who didn't speak English (par for the course) and someone who said "it's nothing to do with us". After a lot of patience and swearing at automated machines I finally managed to get through to the Consultants Secretary.

It's not her fault, but the lack of communication in that place really makes me angry. It's the patient who suffers, not the person answering the phones who doesn't give a damn about anything. (You know the type!). I know that there are a lot of caring people in hospitals but there are also people who don't care. A lot of money is wasted this way.

In this case they had an MRI machine all ready and waiting for me and because some "person" didn't tick the box for transport the whole appointment was wasted. It was my time, the radiographers, the receptionist, the nurse assisting, so many people. The machine costs lots of money to run and that is also taken into account. It must run into hundreds of pounds.

I was supposed to get a call back but as I hadn't heard from them the next day, I emailed them (we've got phone problems too and need to buy a new phone now - 1 day over the guarantee and it stops working properly!!).

Anyway I finally got a date, 8th August!!!! Another 2.5 month wait!!! I've already waited 6 weeks since finding this lump that still hasn't gone away. She is now going to speak to the Registrar on Monday when she comes back from leave.

Now I know why the patient lists are going down, the patients are dying before they can get an appointment.....thanks Mr Blair for your improvement of the health service...NOT!!!

As you can tell I am extremely annoyed. I am a cancer patient who has found another lump and my bloods are up and I am concerned at what it is obviously. It's more stress I don't need. Why is life so b****y complicated sometimes when it really shouldn't be.

Rant over now, thanks for listening and I hope I haven't scared you too much!


02 june 05
a day at home

After several people emailing me I have decided to write to the Chief Executive, Mr Robert Naylor about the disgusting time I have to wait for an MRI scan after THEY didn't arrange the transport correctly so I could have my scan.

In the past I've let it go and just gone on the next date, but this time a two and a half month wait is just TOO long.


03 june 05
staines community market

The CREST attended this event to raise awareness of who we are and what we are aiming to do.

We got a few contact names and raised some money too which was a bonus.


05 june 05
ashford on the map event

This was another CREST event. However this time I didn't volunteer for it. I was absolutely shattered after Friday and needed time to recover.


06 june 05
the beacon

Another day at the Beacon. I really look forward to these days and it helps a great deal to talk to others in the same position. It is a fantastic service that is provided for mainly cancer patients, but also some with life threatening illnesses too.


13 june 05
the beacon

We cover a different subject each week here and there is a lot to be learnt. I lvoe the meditations which I've never really done before coming here. I was surprised to learn that they really help relax me. I can't wait for the CD when we can do them at home with support too.


14 june 05
guess where i should have been??

Yes I should be getting my results in the hospital but obviously never having had the scan I can't get them. Mind you they did call me yesterday and said "transport has been arranged for tomorrow - are you still coming?". I ask you - communication is seriously lacking in that place.

One other thing though - I had a call from Nicola Stevens (hope I've remembered the name right!) who is the Imaging Superintendent. She wanted to rearrange my appointment which is good. It is for MONDAY!!! Not a lot of waiting now...this is how it should be if they get it wrong. Transport would be arranged too and also a follow up appointment.


20 june 05
the middlesex hospital, mri department

7.15am and I'm just out of the shower and the doorbell rings..... it's Hospital Transport!! Arggghhh - my appointment is not until 11am and he's there at 7.15am - never mind I ask if he can wait whilst I throw some clothes on and he can luckily. He was told it was 9am for my appointment.

So I got ready in double quick time, forgot my drink, my compression stockings were a nightmare to get on (hot weather doesn't help!), but I did it and off we went.

We had to collect someone else first and then we were on our way. Obviously I got there really early and went to check in at MRI Imaging. I said I'd get my bloods done first and then come back.

Off I toddled out of the hospital, across the road, walk along a bit (past a very inviting pub!) and into another building for a blood test. Guess what though...they couldn't find a vein at all. She asked if I'd had chemo and a picc line, I said yes to both and she frowned at me! Said it wasn't my fault though but made it more difficult.

Finally she had to get another needle and go into the wrist area instead. It started to flow and I said "yes, it's going!" and she replied "don't get too excited, it could still stop" which it has done in the past. However this time it was fine, I just held my breath and waited until she'd filled the three tubes!

Back to the Middlesex Hospital and I got soaked in a downpour. There is a heatwave and in the middle of London it was pouring with rain. Nowhere to shelter, so it was just a case of walking on until I got inside. I must've looked really odd....soaking wet, but bright red as I'd got caught in the sun at the weekend (I know, I know...naughty!).

I got back to the Main Reception area and thought, there's a lovely sarnie bar that John had found before and I could go and get him a nice cake. So off I trot again, just as I get half way what happens?? Yes it pours with rain again, more than the first time. Nowhere to shelter again, even the trees couldn't stop me getting wet so I just continued on..... back to the hospital.

Down in the lift and in to the basement for my scan. I waited a long time as I was so early but luckily I'd grabbed a book I've just started and got through quite a lot of that! It is a brilliant book by someone I tried to read before but couldn't get into. This time I did and it's very tense but makes excellent reading.

Just got to wait for the results now.....


23 june 05
Mr Briggs, bolsover street, london

11.15am and transport has arrived. Yes - it caught me out again! My appointment is not until 1.45pm but he said there was bad traffic out there so came early just in case.

Again, I threw my clothes on (no I wasn't just out of the shower this time but I had my old lounging around clothes on!). Grabbed my brilliant book and off I went.

I had a whole 10 seater ambulance to myself as the other lady he was to pick up was too ill to go. See again, there is a huge waste of resources in the NHS. I'm on my soapbox again but it's true. Why send a 10 seater ambulance out to one or two people???? It should be done to collect as many as possible not just a couple.

Anyway we had traffic everywhere.....every road we went down it was there. In the end it took us 2.5 hours to get there!!!!!! We were hot and tired. It was an older ambulance with no windows in the passenger area so all I got was the breeze from the front windows. It helped though so I didn't worry too much about it.

When I arrived I was the first one in the clinic (as anyone who has been to Bolsover Street will know it's HUGE!!). All on my lonesome with a warmish bottle of water (he didn't have chilled!) and my book. So I made myself comfy and listened to the nurses saying that the Consultant and his Registrars hadn't arrived yet so clinic would be late.....they are never on time they said so it is always late. The poor nurses were all ready, x-rays and files all sorted and had to wait around for the Docs and Registrars to arrive.

Eventually they arrived and clinic started. I wasn't called for quite a while. My appointment was 1.45pm and I got in at 2.20pm instead. I've waited longer but it was the driver sitting outside that worried me, in that heat.

Finally.....my name was called. When I entered the room there was Mr B and about six other people!! Some registrars and also a couple of nurses. He asked how I was and said I was looking fantastic. He sure knows how to make you feel better than you really are! I put my bag and drink down and he told me he wanted me to sit there instead so I moved it across and said "best do as I'm told, don't want to get told off!".

At this stage he said "Karen presented with Primary Bone Non-Hodgkins Lymphoma, she has had radiotherapy and CHOP chemotherapy and some other problems too, and she is ..... (get this!) tough as old boots!". I said "thanks for that" and he smiled. I'm sure he meant it in the best possible way really (I always think of Kenny Everett when I say that!).

I mentioned the pains I'd been getting and I can't remember much of a response to that. The other Docs have told me that I will have that though. I suppose I should logically as it's in the bone.

He then asked to look at my legs.... as usual I had those horrible compression stockings on. I said "you can take them off if you like....good luck if you do!" and he replied "it's OK, leave them on" with a smile on his very tanned face.

He felt both legs and said they felt fine. I mentioned the other lump and that I was having an MRI scan/blood tests. He wants to know the results when they come in and to ask Dr C for them to be sent across to him.

He also said he'd pay the sponsor money for our World Record Attempt as well so that's good. The hardest part of sponsoring is getting the money in!

Well it was then out the door and a quick visit to the ladies (in case traffic is bad - like a good girl guide - always be prepared!). Luckily we didn't get as much traffic on the way back and we made it home just over an hour later. It was so hot in there though so I was glad to change and feel cooler for a while.

Now it's a case of waiting for the results and seeing what happens next.

Have a great weekend all of you and I hope it cools down soon....way too hot for me (and the cats!) :-))))