Fun in London

After the gig yesterday Rob and I went to a really funky place for breakfast called The Cereal Killer Cafe. There were loads of retro cereals there and also Rob and I shared a pretty wicked hot chocolate!!

We also went to Fortnum and Mason as Rob had never been before!

Rob treated himself to a lush new perfume and some marzipan fruits!

We then wandered around a few shops and Rob bought me a new hat because of the snow (which was crazy heavy at this point!), I think I'm rocking it.....

In the evening we went to Alex and Milly's engagement party and then for an awesome curry at Dishoom.

Tomorrow we have the meeting with the neurofibromatosis doctor to see if I actually do have it or not. I'm not really nervous about it as I'm pretty sure I do have it and as I don't have to have any treatment for it, for me it's more of a box ticking exercise.

MRI Scan and a Gig!

Today was a bloody weird mixture of a day!

First thing I had a delightful MRI at East Surrey hospital. It has been snowing here for the past few days, luckily yesterday Rob put winter tyres on Beppe (my little Italian car!) and we drove to Redhill. The MRI was of my head, spine and chest. It was awful. Normally I am okay with MRIs, I just get on with them because there isn't much else you can do. But since my denosumab last week, I have been having massive pain flares. I had to lie very still on the hard MRI bed, with my head strapped into a thing that felt like a scold's bridle and a weight thing on my chest for two. fecking. hours. When you are having extreme pain in your spine, not being allowed to move whilst lying on something hard is not fun at all. I could cope with the beeping, whirring and clunking noises but it was unbelievably painful to lie that still for that long. Anyway I did it. Legend.

We then drove in the snow to Gatwick as we are having a few fun days in London. We caught the train from Gatwick up to London and got to our funky hub hotel. We chilled out for a bit, had dinner at The Diner and then went to a tiny venue called Hoxton Hall to see a singer Rob and I love called Aurora. There must have only been 250 people there so it was intimately awesome.

She also sung one of my motivation songs called Warrior. Have a listen

Denosumab

I had my latest bone strengthener today. It is *so* much better than Zometa! My poor veins were just not playing ball for Zometa any more. Last time I had it they tried about 6 times to get a cannula in and eventually it worked. I felt like a total pin cushion!

This one is called denosumab, it's something called a monoclonal antibody and it is a quick and (almost) painless injection! Whereas the zometa was done at Guildford (which meant the schlep up there, the being hooked up to an IV, the sitting in the treatment room feeling like a cow being milked), this one is done at Crawley. A quick 20 odd minute drive. They then prepare the injection, jab me in the tummy and away I go.

Obviously like any cancer treatment, it's not without it's side effects. The drug in simple terms aims to rebuild my bones that have been eaten away by the cancer.

In normal bone, two types of cell work together to shape, rebuild and strengthen existing bone:

• osteoclasts, which break down old bone
• osteoblasts, which build up new bone.

Secondary bone cancer occurs when cells from the original (primary) cancer spread to form a new tumour (secondary cancer or metastasis) in the bone. Cancer in the bone causes the normal activity of these cells to change. As a result, osteoclasts begin to break down too much bone. This increases the risk of fractures (breaks) and can cause pain in the bones.

Denosumab works by targeting a protein called RANKL, which is needed for new osteoclasts to be made and to function. Denosumab binds to the protein and stops the production of osteoclasts. This helps to prevent further breakdown of bone and reduces the risk of problems caused by secondary bone cancer, such as fractures or compression of nerves in the spine.

The main side effect I have is pain, pain that needs quite a lot of painkillers, including oramorph (oral morphine), pain that wakes me up crying in the night. The cold weather we are having at the moment exacerbates the pain as well. I'm tough though, I've got this....!

Making Memories in Mexico

¡Hola from Mexico!

Who would have thought it. I have gone from being a frightened, scared to leave the house, agoraphobic mouse to travelling on a plane for 12 hours to Puerto Vallarta in Mexico.

Rob and I have had a fantastic time making memories in Mexico. We have been whale watching, fed iguanas, driven buggies through the Sierra Madre mountains, been to an island powered only by candlelight, bought bread from a traditional Mexican bakery with the ovens built into the mountainside, seen 12 hour old turtles released into the sea, seen petroglyphs from 450BC and sunbathed just a bit.

Happy, happy times xxx