The Furry Monkey

01 june 06
rnoh, london

Here I am waiting for the results of the MRI scan. Eventually it is my turn and in I go with my crutches to see Mr B. It's like a modern art picture on the wall with all my scans.

He told me that there is no nasty stuff in there at the moment, it is healing bone so that is good news. Although the pains are bad and I have to take more morphine it is healing bone. I forgot to ask how long they heal for but have since written to Mr B and hope to get a reply back.

Now you won't believe what happened next. I asked him about my foot and he examined it and said it is achilles tendonitis. It is SO painful and he asked why the physio hasn't helped. I said that as it's not what was originally referred they can't touch it so he would have to refer me back again. I won't tell you what he said but you can image and that is their own system!!!

People were complaining that the delays were too long and I got in there and could feel the knives in my back. I'm now of the mind that it's my appointment and if I get called in then it's my chance and I'll take it!!!

Transport was not fun, in the last two times I've been home via Poole in Dorset and Kent!!! Way out of the route home but I went with the flow as they say. I just hope it doesn't happen again as it made me so tired. I've been told that the fatigue can last 10 years or more (assuming you're still here!) so I hope I can break the record and get rid of it earlier. I do tend to get tired very very easily and then don't sleep when I'm supposed to.

I was then sent all around the houses whilst trying to book a physio appointment and transport to get there and back. It's a nightmare with so many places you have to go to. You would think they'd have this problem sorted out by now. They need a REAL PATIENT to sort it out and make sure it works smoothly. Nothing is worse than sitting at home waiting and realising that they have forgotten you AGAIN.

13 june 06
rnoh, london

Back again for physio. This time for the leg and foot. It is SO painful and Nikki said that it is the Lymphoedema which is causing the constriction on the achilles tendon and as there is no chance that the Lymhoedema is going away it is a problem for the achilles. I'm convinced I had it before and it did eventually go away but this has been here for a month now and still no signs of it easing.

She did some stretching on the foot and some small massage on the back of the leg. It was very painful but nothing I can't handle. I'm getting used to pain now and it is not something I would like to continue doing if possible.

Nikki is going to speak to Jan to see how mcuh massage she can do as she said it is very very tight. I've also got to see Orthotics to see if that will help but need to see Mr B to be referred to them.

Another nightmare. Leaving messages on the ansaphone at RNOH and no one getting back to you to deal with it. I've just spent a while going around the houses trying to speak to someone to get referred.

In the end I had to email to ask. Now why couldn't I have just been given the email address to start with and done it there and then. It's all wasted time and effort when it shouldn't be.

Well I'm conscious that I've done a lot of moaning here but it is all valid and if it was sorted out properly in the first place it wouldn't be required would it. A disaster that could be averted. Along with the stress and hassle when I least need it.

So on that note I am now going to go and have a nice fruit tea and rest my legs.

I'm pleased to have finally caught up with the diary and have Trisha and David to thank at Macmillan for all their help, along with TACT too. Thank you all SO much!!! You've made my year!!! :-))))))

21 june 2006
physio, london

Another session of physio. The crutches are making life both easier and more difficult. Easier to walk with, but more difficult as I can't carry anything or look at anything without them falling over and making lots of noise!!

A friend of mine, Mike, is also using crutches at the moment and he says he's amazed how incosiderate people are. They walk in front of you without a care in the world, or even worse expect you to go around them even though they can see it's difficult. I tend to let me feelings be known sometimes if people are really idiotic. They need to be told!!!

The physio said that as the Lymphoedema is a chronic condition that will be with me for life then this is similar. It may go away for a while but it will be back, or it could never go away and be there all the time.

Sometimes I think it feels easier then it comes back with a vengeance! Even when resting it the pains are still there and when you try to get up and walk, ouch!!! Does that hurt or what.

Anyway we did some exercises on the parallel bars, no not jumping over them but stretching gently to increase the tendon length. I also have to spend 2 x 20 minutes with my legs higher than my heart resting. Sounds like excellent exercise to me!! Even just sitting here doing this hurts at the moment.

I've been referred to Orthotics but to date have heard nothing about an appointment, the wheels of the NHS run very slowly indeed. As soon as I've seen them then I have to go back to Physio. She did say she would contact my Lymphoedema Specialist to see what else she can do but nothing has been done yet. I have a feeling this is it and I will be just left to get on with it, the same as the Pain Clinic and the Dental Clinic for the mouth problems. It gets patients off the books and they look as though it's all solved when really it isn't. It just means the patient has to deal with it as best as they can with no support at all.

So, something else to cope with now. Sometimes I despair of ever having anywhere near good health again. We take it for granted and then it all goes wrong.

Just have to make the best of a bad job as my old Nan used to say. I feel within my rights to have a good old complaining session at the moment as I've just been left to cope with things on my own and yes, I'm a strong positive character but sometimes it would help to know that there is someone out there who wants to help make things a little bit better for you.

25 june 2006
buttercup walk, rnoh, stanmore

The Big Day has arrived and we're all on the way to Stanmore. We got there early to get a good space and then as the restaurant was open we decided to go and have brekkie. It was pretty empty so we got a good seat where I could put my legs out without tripping people up.

Mum and Auntie Rita then went to register and get the Joining Pack details. I went to look at the stands but it hurt so much after a few steps and John had to come and rescue me in the car park with the car. It's been bad since May and it's dragging on and on at the moment.

Anyway, the walk was started by Luke Hamill (he's been in The Bill) and off everyone went. You can check out the photos of Mum and Auntie Rita at Buttercup Walk to see how they did.

As you can see at the end they did very well and got their Certificate and Badge for finishing and raising money at the same time.

I'm not sure how many people were there but last year there was 600 so there hopefully was more this time. They need to put some info on their website about it, including how many went and how much was raised. I'll keep an eye on it, but they didn't do that previously.

Mind you I also emailed several people there to ask for the Logo so that I could make the banners but no one come back to me. If organisations want you to help raise money they should at least answer emails shouldn't they.

It was a good way to spend a sunny Sunday though and we enjoyed ourselves and we'll be back next year maybe to raise more money.

WELL DONE MUM AND AUNTIE RITA!!!