A Mixed Bag

Colin took me to my appointment today, bit of a mixed bag. They still aren’t sure if my spine is better or worse! I’m a complicated beast it turns out. Basically one of my tumour markers CA125 has risen a fair bit since they were last tested, however the other tumour marker (CA153) has gone down! They really aren’t sure what’s going on! So my onc wants me to have another MRI and a CT. These actually tie in with my regular scan checks anyway so all good. If the area at the base of my spine has got worse, then I’ll have to have some radiotherapy. Rads is fine though, I can defo cope with that.

My onc has asked me if I can be a case study! I’ll be written up (completely anonymously), as an example of not rushing into unnecessary treatment. So if another less savvy onc than mine had seem my brain scan and assumed it was mets, they could have gone straight to treating them. However, mine looked at my notes and considered my potential neurofibromatosis. Thank goodness she did.

Basically I have cytomas in my brain which are benign and are as a result of my NF1. She could have just assumed they were brain mets. So that’s why she wants to write me up! I’m interesting medically because:

- I was diagnosed young first time round, just 28

- I have secondaries

- I have neurofibromatosis type 1

Then we went up to Comet Ward for my denosumab, easy as ever, injection in the tummy and that’s it.

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

Good Results!

I'm very very pleased to let you know that the lesions in my brain are not mets. After two brain scans and some terrifying waiting (6 weeks!!) I received the good news. I'd been waiting for so long because the second set of scans had to go to neurologist specialist teams at St George's. They confirmed that the lesions certainly do not look like mets and that they will scan me again in 3 months to keep an eye on things. Huzzah!

Stepping out of the shadows

So I haven’t blogged properly in a long time. The truth is it’s been a difficult ride of late. So, what’s new in JojoLand:

1. I’m no longer on the trial. Ribociclib had some seriously severe side effects which were impossible to cope with. I had already dropped down to 2 pills but it made no difference. We ended up having the “quality vs quantity discussion” but in the end it was taken out of my hands as TC made the decision. It’s supposed to be a wonder drug but with the side effects it causes it’s just not worth it.
2. I’ve been in A & E 3 times in as many weeks. First time for severe back pain, sent away with oramorph. Second time for either a reaction to the contrast I had during or a severe panic attack. My heart rate was at 130 and stayed high for hours.Third time (ie now, blogging from my hospital bed) was for suspected spinal cord compression. It’s now been confirmed it’s not that thank goodness! My MRI scan did show a “white spot” at the top of my spine though, I found out a few hours ago it’s not mets, I burst into tears when they told me. Apparently it’s just “an anomaly” that could have always been there...
3. I had a brain scan. The most noisy, claustrophobic scan ever. I’m waiting for further results on this. They have come back already as “abnormal” which is obviously shit scary. Cross fingers for me please.
4. I’m going to need a new treatment plan. Once I find out wtf is going on with point 3 above then I’ll be in a position to move forward but for now I’m stuck in limbo land.
5. I saved someone's life. I gave a man CPR and made him breathe again.