The Furry Monkey

01 october 05

Forgot to mention (nothing new there I hear you cry!) that I've got my bone scan appointment - I'm going on the 04/10/05.

It's an early appointment as it takes about 4/5 hours for the scan. You have to be injected with radioactive gloop (remember Graham!) and then you have to wait 3 hours whilst it goes around your body. Then you come back for the scan which can take an hour or more depending on the type of scan you're having.

Transport has been arranged too, and also for the follow up appointment when I get the results.

04 october 05
nuclear medicine department, uch, london

It's 6.30am and I've already fed our friends cats and our cats - I'm cat sitting whilst they are on holiday. They have two lovely brothers - Cyd and Tim. I've also fed ours and made sure John is up (he'd stay in bed all day given half a chance!).

Tablets taken, breakfast eaten and bag all packed (book, purse, notebook, drugs, etc etc). It's like going away for the day.

Anyway it's soon 9am and I'm wondering if I've been forgotten. When it's a morning appointment it's normally 8am or just after that you're picked up. 9.30am arrives and I'm now convinced I've been forgotten.

My appointment is 10.10am but you're not allowed to ring re transport until 11am which will be way too late. I let the clock tick tock to 10.15am and then call Nuclear Medicine to tell them transport hasn't arrived and I probably won't be coming.

This is where money is terribly wasted in the NHS!!!! If they let us patients design a system that works it would save them thousands of pounds a year. Instead of calling a taxi firm to take one patient home use their Ambulance Service to it's fullest and get a few patients going to the same area home in one ambulance car.

They should take a lesson from the Royal Homeopathic Hospital. Their transport system is perfect and you know they are coming as they call you and let you know. Only once in all the time I've been going to the Middlesex have I had a call telling me my transport has been arranged for the next day.

I then had to call Vicky, Dr C's secretary and let her know what had happened. She was going to find out what was going on and call me back.

She called me back later and said that she had told them the "fourth" and they interpreted it as the "fourteenth" - how they did that we don't know but it now has to all be rearranged, including the follow up appointment. Another BIG waste of money!!! She did ask if someone could come out and get me there before 12 as I could just make it timewise to get the scan and the three hour wait in but there was no one available.

Meanwhile I'd emailed John to tell him I was still at home. He offered to take me up there but there wouldn't be time before 12 to get there to ensure the scan happened.

A total nightmare.....it always happens to me it seems. I know there are others that it happens to, but when you're sitting at home, waiting for transport to find out what is causing all the pain in your body then it is so annoying. The whole house was blue as I went around swearing about it.

Now I've got wait for another appointment to arrive in the post!!!!

05 october 05
home

You won't believe this but an ambulance turned up today!! I told him it wasn't for me as I was expecting them yesterday and he replied "no I've come to drop off not collect!!"

He had a man in the ambulance to be taken home. He didn't live here that's for sure. I asked what his name was as I might recognise it.

It turned out to be a man we know who lives 5 doors away. He's had a series of strokes and can't talk much so couldn't tell him. Good job I knew him or what would happen.

Again it's a number thing as they got it all mixed up. Anyway at least he went home and it was the right day if not the right time I later found out when I went to see how he was doing.

07 october 05
lymphoedema clinic & palliative pain care clinic

It's been a long time since I had these appointments. Bernard phoned me to say could he collect me early - early! I was just pleased someone was going to collect me after the last episode. So I got there 30 mins before Clinic started.

I saw Jan first as she was available first. We talked about the legs and the pains etc. She then measured my legs and the right one has increased a fair bit, it could be because of the increased pressure from the left one. I also mentioned that the stockings keep falling down when I walk so I'm to have new ones sent out to me (she did warn me it could take a while though!).

It was good to catch up and we talked about all sorts of things and she will write to Dr C about a couple of things. Hopefully it will help move things along.

Then I sat down ready to see Dr F. He came out and said he had a medical student in with him and would I mind? No of course not - how do they learn without hearing real patients.

He asked how things were going and I mentioned the leg pains and also the arm pains. He then examined my arm and we discussed at length the sort of pains I get and problems it causes.

After I have my bone scan, assuming there is nothing wrong then he said to speak to him again as they may refer me to an Orthopaedic Surgeon for the arm. It could be lipoedema or a "carpal tunnel like elbow" he described it as similar to the hand carpal tunnel and may need an operation depending on how bad it is. A nerve test could be required to see what the problem is.

All I now need to do is wait for the Bone Scan to find out what is wrong. I know when I had an MRI for the lump in the leg (which is STILL there!) and although I was told there was no recurrence they didn't tell me what was wrong with it and WHY the lump is still there. It would be good to know wouldn't it really?!?!?!?!

08 october 05
home

My new appointment for the bone scan has arrived. It is now on the 12th October and the follow up is on the 18th October. Vicky has confirmed transport has been booked.

Mind you until I'm actually on the way I won't believe it. I've rung up a week before, two days before, even a day before and been told it's booked only for no one to turn up to collect me. You can understand my cynicism in not believing it now can't you!

10 october 05
ROYAL LONDON HOMEOPATHIC HOSPITAL

At least I know these people are going to arrive to take me to the hospital. They always phone the day before to confirm the details to you. More details later.....

12 october 05
nuclear medicine department, uch, london

The re-arranged appointment is here. I wasn't to be collected by someone I knew as they didn't phone first. Although I had met the guy before but he wasn't with Surrey Ambulance.

The journey was quite nice, it was a warmish sunny day and we remarked how nice it was for October.

I got to the department and was told that it would be quite a wait, good job I'd got my book with me. Wahooo my name's been called, and I hardly had time to open my book! In I went...now's the nasty part - the injection. I don't mind them anymore honestly - the thing I don't like it the number of times to find a vein. If only we could have a little tape contraption which would be used to either take blood or give gloop - now that would be my ideal invention!!

She had a prod around and said she wasn't keen on 'just going in' everyone is different so I just give them a hint and let them get on with it. She did quite well and after a bit of moving around found the vein!! Success...!!!

So now I had to go away for three hours to let it get around my system. Now in London you can go a lot in three hours, but not when you can't walk very far! I went outside the Hospital and sat on a seat and looked at the world sailing by, people coffee in hand, or food in hand going about their daily business.

I had a small wander down the road and took it slowly. It's amazing how vulnerable you feel sometimes. I was pleased I'd taken my bag that goes over my body and not one you carry in your hand. See it's the small things that make a difference.

I didn't go far as I knew I had to try and walk back so I got a drink in one of the shops and made my way back to my 'bench' and sat there. "Hello" said a voice I recognised. It was Jan, my Lymphoedema Nurse. She was on her lunchbreak and looking for a 'energy hit' to keep her going. I don't know how they work all those hours. A very intense job. We chatted for a while and then she went off in her search!

Meanwhile I sat a while longer and waited for the time to move round so I could go back in. Soon it was time and I had a slow walk back to the Nuclear Medicine Department. I booked myself back in and was told to have lots to drink so I got a nice hot drink from the machine (which isn't bad since it's a machine brew!) and read my book......followed by my second cup. Bearing in mind they are LARGE cups. I don't normally drink this amount at the hospital as it can take 3-4 hours or more to get home and there are no toilets on the ambulance!

Again my name was called and I made my way to the scanning room. The machine had been playing up and it broke when it was my turn. He had to do the scans the old fashioned way by pressing the button and moving the scanner down to the right body part. I was expecting it to be my arm only as that is the main problem but he said it was a whole body scan! I was quite pleased about this as I think you should have a total body scan every now and then, specially if you've been getting pains more than normal as it puts your mind at rest.

It took over an hour (from memory) for the scan and I have had back problems so my back hurt when I started to get off the scanner, then my leg started to twitch and I knew it could be cramp starting. I didn't want that to happen as it is SO painful. All I can do is cry.

Luckily it didn't happen and I kept flexing my leg to keep it at bay as I walked to the next room and had my arms scanned. One scan was a lot darker than the other and the woman said 'it looks like there is something there but your Doctor will know more than me' which was worrying to say the least.

So after all that waiting and on the scanner, it was now time to go and I had to find the new transport department. As the Hospital is soon to close and move to their brand new state of the art hospital things are moving around all the time. The Oncology and Radiotherapy are the last to move so I've been told.

Now all I've got to do is wait for the results....

18 october 200
tuesday tumour group! (aka lymphoma clinic)

Here I am again, sitting waiting in the Clinic. Hopefully the wait won't be toooo long unlike previous ones. I'm going to miss this hospital as I know it so well, the Whitbread Ward (Cancer), the Lord Athlone Ward (Gallbladder), the Nuclear Medicine, Radiotherapy, Chemotherapy, Clinics, bone scans, ct scans, you name it and I've had it here......it's like an old jumper or pair of favourite slippers...it's just so comfortable. I'm not really looking forward to the new hospital, all new and clean yes, but no character at all. Still that is progress as they say.

My name is called and in I go. Dr C is smiling and says 'it's not a new Lymphoma which is great news' so we're both pleased. However it doesn't explain the pains and why I can't move my arm and it wakes me up at night. She looked at the results and scan and it says I have "significant degenerative disease" in my joints but more so in the right side of the body, arm, shoulder, leg, ankles. Still at least I know what it is now. She has a letter from Dr F saying he'd be prepared to help me with the pain, so she advised me to take him up on it as he doesn't normally do it like that so I agree and she writes to him on my behalf. Hopefully he can help me with easing the pain. No matter whether I do anything or not it doesn't make the pains better.

When I got home I didn't feel too good, all shivery and cold so I went to bed soon after. I was going to the Doctors on Thursday to have my flu jab so hope it was just where I'd got cold on the way home.

19 october 05
at home

Well it wasn't just me getting cold, it was a cold! A real stinker.....I feel awful. John got me some cold remedies in his lunch break and I took one straight away. It didn't help that much but you hope it going to work! I was supposed to be going to Princess Alice Hospice today for a Palliative Care Meeting but I just couldn't go like this and had to phone up and tell them. Once they heard my coaky voice they understood though. You always wonder if you should go but would they think 'she shouldn't have come, poor thing' or 'why the hell did she come to spread her germs'. I don't like to have to cancel these appointments as they are important to everyone. Still it can't be helped.

29 october 05
tact meeting, chertsey

I was still feeling awful but had to go to this User Partnership meeting. I took some of my handmade cards with me and sold a few which was good. They also want me to take them next time which I'll do. My friend has taken some to her workplace and sold loads.....all the money is going to Cancer Charities and I'll send a cheque to them.