What's the buzz? Tell me what's a happenin'.......

Jesus Christ Superstar reference there.......anyway......

Right! Yes! Decision made!

Autologous (my own) stem cell transplant - I will be admitted to hospital within the next month, I will have a chemo cocktail called BEAM which is given over 7 days. You start at 7 and count down and on day zero you have the actual transplant. Pretty space age sounding a? The chemo puts the immune system to zero, nada, nuffink. Then the stem cells get put back in and immune system starts to 'grow back' , once blood counts acceptable I can go home - usually around 3 weeks from day zero. Because I am made of magic and have fairies on my side I will obviously be home and fit asap.

In the old days there would have been a prolonged period in proper isolation, now they seem to focus more on sensible universal precautions in and out of hospital, soooo

• No little kids to visit (they are just walking bug towns)
• No flowers, pseudomonas bacteria = baaaaaaad
• No unpeeled fruit / veg / salad
• No uncooked fish / soft cheese / runny yoke eggs
• No ill adults
• No doggy in the bed - :(
• No crowded places / indoor places (salsa, gym, shopping etc)
• No manicures / pedicures

The above will be hard, but I will still be able to walk on the beach, eat bananas, have foot rubs..........(won't want head scratch cos will be bald as a coot!) 

I believe in this, I really do think this will cure me- and that is the main thing for me, as I have talked about previously -  statistics are not always helpful. By the time I am forty - YES! FORTY! - I will be back in the game :) I am almost looking forward to being sensible and sedate, who knows!?

And, you know, if it doesn't - well, it's been a flippin blast.

My MRI scan was normal- hurrah!!! So I had Brentuximab numero 10 last week. But to make double sure I was all clear had a lumbar puncture on Monday (spinal tap) to test the spinal fluid for the madness virus (PML). Ouch! Poor me! Registrar was sooo awesome though so that was cool - the whole experience re installed all my faith in my ace team.

Having missed a treatment and then late it was 7 weeks between the brentuximab, so it was almost like going back to the beginning a bit and it kicked my arse. But I did manage to do the 10km Jurassic run 2 days after (Horrible!!) so it can't have been that bad :)

Well that's nearly all my news! Apart from- this Friday , 8 of us are going to London to see the Arena production of Jesus Christ Superstar! It's going to be epic!!! It's my fave musical EVER and the fantastic Tim Minchin is Judas!! Thanku universe!!!! Oh and obviously thanks mum for credit carding it months ago when we didn't even know if I would still be here to bug you all!! haha!

Massive love

xxxxxxxxxxxxxxxxx

Am I making any sense?

Last Wednesday I went to chemoland to get bloods done for the next day's treatment and to chat with my Consultant about the appointment in Bristol with the bone marrow team I had a few weeks ago. 

I was keen to get on and have chemo because I missed the last dose,Brentuximab number ten, cos I let it slip I was a little concerned about my mental function (difficult to assess I know). Anyhow, he was hoping to have my brain scan results back prior to our last meeting but I hadn't actually even had the scan.

Consequently, there was to be no chemo without the reassurance of a scan that shows I am not going mad. The consultant didn't have time to discuss my stem cell transplant decision making. Whilst he was telling me he didn't have time to talk to me a nurse I had never met, nor introduced herself to me, stabbed my port for bloods. Whilst she was attaching her tubes and I was trying to pin the consultant down to a plan before he ran off. I then had to question whether I needed the bloods done at all, er no he said. Ok so out with the needle, she asked if I wanted a plaster I said yes, she gave me a swab to press on it and never came back. 

I went to the desk to make an appointment for the following Thursday (tomorrow) by which time we are hoping there is the MRI result so I can have chemo and have proper chat about transplant. The nurse never came back with the plaster. I had gone up to the hospital for no reason, I walked out the unit bleeding a little bit from my port and trying not to cry.

I know! It sucked, right? After my appointment in Bristol and all the thinking I have had to do and all the faith I put in my team to start to come to a decision I felt so let down. I have to put this into context this was my first really negative experience, and I was highly anxious cos I am just wanting to set a date and stop bloody missing treatment in case I eeeeeeeek slip out of remission! Damn! Shouldn't have mentioned my stupid memory!

So, I had my MRI scan on Monday which went fine, only took about 10 minutes. You have this perspex box thing over your head and they give you headphones to wear cos the actual scanner is really noisy. Also you get a panic button in case you start freaking out and getting all claustrophobic or something. I nearly pushed the panic button when they started the scan and started blasting Adele in to my ears! Nooooo!! I asked if I could have a photo of my (awesome) brain, so I can frame it and hang it on the wall, you think I'm joking! I can apply for a copy through my consultant, cool. What's not cool is that standardly it takes 7-10 days for a result. So yep you've guessed it I may not be treated again tomorrow. I have hassled the secretary to see if Dr can push result along, I was told today that I would be discussed at the multi disciplinary meeting and to keep my appointment tomorrow, so who knows?

Maybe I should start kicking off, but it's not my style, I don't really believe that it will help. I don't know though I am pretty stressed about it all. Probably knowing me I will just cry if they delay it again. Deeeep breaths....

It's doing my head in now, ever since Bristol I have felt in limbo and totally lost my mojo. I haven't even been to salsa, cos I have been all like - well soon I won't be able to go for aaaggges so what's the point? Rather than normal me going yayyyy squeeze every last bit of life out of life!

On a positive note! Hurrah! Me and deb signed up for the Jurassic 10km this Saturday (more accurately she totally sorted it out cos I am too lame to do shit at the moment) 

Ok, well keep your fingers crossed, I promise to try not to cry tomorrow! Am I making any sense? Am I nuts or just anxious? I dunno!

xx