The Furry Monkey

01 august 2006

I know, after my appointment at the Lymphoedema Clinic you're all expecting me to say that the stockings arrived whilst I was on holiday aren't you. Sorry to disappoint you but nothing has arrived.

I've still only got one pair of the correct stockings which take over a day to dry after being hand washed only. What a situation huh. I know the NHS is in dire straits but hey, at least if they got the stockings out it would mean less pain for the patients, and in the long run, less time for them having to see us as our diseases have gotten worse without the right treatment.

In the end it is the patient who suffers not the bigwigs in their office with their air conditioning and expense accounts.

As you can tell the heatwave hasn't helped my legs, or the increased pain and as with everyone pain makes you niggly.

Another thing is that my good friend Monica has had some bad news and is back in hospital. I hope that things go well with you Monica and email me when you have the energy.

Also Mel's Mom - you take care and you will be fine. I send my best wishes across the ocean to you. Sierra is looking good now (Mel's dog who had to have her leg amputated - she is doing as well now as she was before and gets lots of sympathy too, bless!).

Anyway another appointment in London tomorrow so will see what happens this time.

Enjoy the cooler weather everyone - I know I am!!!

03 august 2006
lymphoma clinic, uch, london

My regular check-up in London at the Lymphoma Clinic. It was a long long long wait to see Dr Cassoni and the driver was getting anxious but said she would wait 20 minutes for me.

Eventually my turn came (mind you everyone else who had been waiting had been and gone by the time I was called). She checked my neck, arms, stomach, etc and everything is still under control which is good. Still in pain with the bones which I tried to explain but it's not easy. When I catch it wow the pain is the sort that makes you feel sick. I'm sure there must be some reason for this pain but the MRI scan says it is healing bone. I don't know how long bones take to heal but it's so painful.

She is concerned that I am still on morphine and is going to reduce the dosage with a view to getting me off of it. She said it will take a long time but that's what we're working towards.

I've got to have a blood test next - at least it's in the same building now which is easier for me. I went and joined the queue when suddenly, the fire alarm went off. It was intermittent so we didn't have to evacuate. It was ringing for ages and we all sat there. The driver came back and she asked the Blood Clinic where I was in the queue when we were then told we had to evacuate.

With the Fire Alarm ringing you are not allowed to use the lifts for obvious reasons and the driver got in the lift and asked me if I was coming down. I said no as you shouldn't use lifts in a possible fire situation.

So along with a couple of others we were taken to the stairwells and given chairs to sit on. The Fire Marshall went to check and was told there was a situation in the basement and we were to stay put. She said to me "your driver will wait for you though won't she?" - "I doubt it" I replied. She said she was going and I've seen her before and I knew she wouldn't stay.

After the Fire Alarm stopped and we were back in the Clinic Room there was no sign of my driver. No need to rush now as I would have to wait THREE HOURS to be taken home. All for the sake of 10 minutes.....arghhhhh!!!!

The Phlebotomist could not find a vein at first, then he found one but it was so slow coming out.....my arm was aching holding it up and he told me not to move it - and strangely - not to talk. I didn't know talking stopped the blood coming out! Odd.

Anyway he had to give up as the blood was not right or something (not sure about that either as it's the same in the whole body isn't it! The Supervisor took over and after much searching she found a vein and got some blood out on the back of the hand. It's not unusual for problems finding veins so I'm used to it. It doesn't bother me now as much as it used to as I've had so many problems.

So now I had to wait three hours before I would be in the car to go home, all for the sake of 10 minutes. Surely 10 minutes would NOT have hurt. Oh well, out comes the MP3 player again and a good book.......

18 august 2006

Do you know the bruises are still on my arms from the blood test. I knew he was moving the needle about in there but phew....still bruised after all this time.

I also accidentally hit my leg earlier and it is SO painful. I must remember to mention this to Mr B when I see him. Pain tells me there is something wrong, it's a warning.

In the post the other day I got a letter saying my appointment to see Mr B had been moved, however as I have three booked I don't know which one it is. I phoned and no reply. I phoned all day and still didn't get through so I tried the next day. I eventually got through only to be told two had been cancelled (although they did NOT tell me, I'm only the patient of course...!) and the other was rebooked for September although Mr B wanted to specifically see me at the combined clinic in August.

So now I'm booked for a new clinic on the Tuesday (Transport said there are no clinics on Tuesdays so if they don't know there are I'm not convinced this is going to be right!). They sent a letter telling me I've changed it. I think NOT. If it's not a combined clinic it's not my fault - they changed it.

A really BIG thank you to Mr B for his sponsor money for the Furry Monkey World Record Attempt and the Buttercup Walk! I've got some money for you from our event but I've tried emailing several people at RNOH and had no response. How do I get the money to you if no one replies to me? Perhaps if you're reading this you could let me know. There's always the local Cats Home if you don't want it......<BIG GRIN>...!!!

24 AUGUST 2006
MR B CLINIC, LONDON

Well this was SUPPOSED to be my appointment in the combined clinic, it seems I've been getting regular letters from the hospital changing my appointments every day.

I got one saying my appointment had changed, but out of the three appointments I have, they didn't tell me which one. So I made lots of phone calls, sent off emails and still heard nothing. I didn't give up easy though and kept trying and eventually got someone to answer the phone, I think I caught them off guard.

It turns out they've cancelled all the appointments and not told me about that. So I would've been sitting here like a lemon waiting when no one has any intention of turning up, no wonder there is so much wasted money in the NHS. If only they would speak to the patients we could tell them where it's being wasted. The one they changed has been rebooked for the end of September so I asked if there was any cancellations. They said yes and booked me in and then sent a letter saying that I HAD changed the appointment. I think not.

The only thing now is, it's not a combined clinic and as it's a Tuesday I have a horrible feeling Mr B won't even be there. Will have to wait and see...not holding my breath though......

29 august 2006
mr b clinic, london

So here we are, chugging along to London. Wondering why there is so much traffic only to realise later on that there is a train strike on. Doh!!!!

Anyway we finally got there and I went to get a drink, there was no point booking in as the clinic is always running late. Guess what - I was right - it is running 30 minutes late and I then find a note on the door saying "Mr Briggs is not in clinic today" - ho hum what a surprise - NOT!!!

After waiting another 30 minutes or so my name is called. There is only one Doctor running the clinic on his own and to be honest he looked a little fed up poor guy.

He's a really good Doctor though and sorted out the Orthotic people who should have booked my appointment months ago. It's almost three months since I last went to see them.

He said "Mr Briggs definitely wanted to see you in his combined clinic, what happened?" and I explained my appointments had all been cancelled and only one rebooked. He just raised his eyes skywards and it said it all.

I mentioned the extra pain I've been getting and that it feels like you've hit your elbow so hard it makes you feel sick. I only have to catch it lightly and it is SOOOOO painful. He said the radiotherapy has damaged the good bone as well as the tumours and couldn't tell me how long healing bone takes to heal or how long the pain will last but he did say be prepared as it can take a long time. Everyone is different. It wasn't a surprise but at least I know now.

He also agreed about the morphine and said "you are having regular checks with the NHL aren't you with Dr Cassoni?". "Of course" says I. He's bought my next appointment back down and said they want to keep a close eye on me. I feel more secure when they are checking things.....it's that safety net that we all need after a cancer diagnosis...making sure that pains are just pains and nothing else happening.

He wished me luck and said to keep going the way it is. I asked at the desk his name but as the receptionist couldn't even book a follow up appointment without help I wasn't going to hold my breath. She didn't know by the way!

The achilles tendonitis is still there (hence his chase up for the appointment) and although it is getting easier it is taking a longgggg time.

Mum has totted up the money raised for Mr B @ RNOH and it's almost £200 which is fantastic....thanks everyone for being so generous. :-)