Sunday, 9 May 2010

On my knees but still staring at the stars

Once the decision had been made, things happened very quickly - very quickly indeed for the NHS which usually saunters along at the pace of a constipated snail.
There was little time to waste if we were to try to stop the damage currently being inflicted on my spinal column. In fact it was so swift that i was still reeling and trying to come to terms with what WAS happening when i found myself, the very next morning squashed tight into a huge Smarties tube, surrounded by the most amazing building construction site noises which a pathetic attempt to distract me from them was being played - '70's cheesy disco music. It was a long uncomfortable hour having every inch of my spine being scanned in very great detail.
But i had no pain. Dr S had seen to that. I was quite calm and relaxed during the whole process.
An hour later i was back on stretcher, having taken a few More pain killers, and being wheeled up to the MRI centre for the results. Still flat on my back of course, until we knew if my back was stable.
Being Thursday it was DR P's big clinic day too and one of the nurses told him I was in the waiting room. Bless him. Out he came for an informal consultation there and then.
I am starting back on Sutent tomorrow (Friday) highest dose, all guns blazing and fingers crossed! I've had so many bits and pieces crossed now for so many people I certainly don't have any fingers left!! (Makes mental note to purchase a troop of African Juggling Octopii - lol) A very short time later I was called in to see Prof James for my MRI results. And oh my goodness - they were good. I have 2 areas of soft tissue deposits right nest to, but not involving, my spine. One where my bra strap is, the other in the small of my back. Both compressing the spine and causing the paralysis but not damaging it - yet. And both treatable with deep radio therapy and sutent. And yes - I can sit up and use a wheel chair!!
No sooner said than one appeared and with the help of three nurses i was soon sat in it. Heaven to be upright again!! I couldn't weight bare, had limited sensation in my feet and muscle wasted, especially in my calves which causes quite a lot of pain. But after transfer I could sit upright quite comfortably and safely.
Prof James exhibited the same positive confident aura as Dr Steve and Dr P had and I was soon signing the consent form for more radio therapy which would begin immediately - this afternoon!!
I was whisked upstairs to the planning department - and this is where I met the first problem of the day. A radiographer who didn't bloody listen to me. I told him that I couldn't weight bare, that I needed a lot of help transferring from chair to bed and visa versa. But his mind was obviously elsewhere and as i struggled to stand with only the help of Hayley, a lovely st Mary's nurse who had accompanied me. He just watched as my legs buckled under me and I fell to the floor, HARD. Fortunately though on my knees and not my delicate back. But the shock and the pain was enough and i was soon crying and screaming at him "Bloody idiot! Weren't you listening when I told you I couldn't weight bare??"
I had to be hoisted up off the floor, no apparent damage done except to my ego!! But the fright and thought and thought of what might of happened if i had landed on my back had been enough. I didn't trust him, didn't feel safe and i wanted to go back home (st Mary's)
In floods of tears, angry and anxious, i took another dose of the strong pain killers Dr Steve had prescribed for my use during the day. Then settled down to wait for the ambulance with Hayley. If i had landed my back it would of been broken in two places - and that would of been the end of that. So I returned to st Mary's still in a bit of a state, being comforted by Hayley. Once back I was checked over. A few bruises. A badly wrenched right arm where i had tried to save myself from falling - just when it was starting to get better too!! But my spine was ok thank goodness. What a horrible end to what had started out as a very encouraging, positive day. I was still angry - very angry though - but agreed to return tomorrow and finish the treatment as long as that idiotic muppet radiographer wasn't involved!! He wasn't. I reckon he had seen me arriving at the department and made a run for it.
Needless to say the rest of the planning went a head beautifully and i was soon my way downstairs for the first treatment (There will be 5 altogether - including weekends too!)
My tummy and sides and now covered in tiny black tattoo markers for the machine to look in on. Never thought I'd see the day when i was covered in tattoos!!
The treatment took just over 5 minutes and we were all back in st Mary's by 5:30 pm - tired and hungry - but all in all one piece

1 down - 4 to go!!


ColBol said...

It was so nice to meet you on sunday, Were glad they sorted you so quickly, your smiling face makes us hopefull that my mum will pull through.
you are an inspiration to not only cancer sufferers but the family members of thoses affected.
love and hugs.

Joanne said...

So, so happy to hear your good news that your spine is okay. I just simply love your humour. Here's to your next treatments & then back to your old friend Sutent which could possibly be the miracle. I believe it will.
Take care Jane. I keep praying & praying.
Joanne (Ontario, Canada)

Alexei said...

Lovely to read your latest Jane. Curses on absurd radiographer. I am so deeply pleased for you and your family. There's a hymn over here called Amazing Grace and that's what you have.

Jan said...

Dearest Jane here you are back and fighting again ,what a girl you are ! after such positive findings about your spine ,and then that idiot radiographer ,couldnt someone slap him ? Anyway by now you will have had more radiography and I pray with masses of success ,and little discomfort ,then back to good old Sudent and our Jane again Jan xx

Andy said...

Some people just do not listen do they? I have met NHS staff who insist on giving me a contrast dye before a CT scan despite it being in my notes and me telling them that i have no useable veins. Still they try and give up after 4 attempts!!! Any way its good to hear you being positive again and i am sure this treatment will help you.


Jackie said...

Blooming marvellous Jane's back with a vengance true fighting spirit and humour all in one post. Hope the remaining treatments go without incidence and all goes to plan. Don't envy you the return to sutent and it's side effects but I'm sure like me you now know how to sort them!
How's the hair??? is it getting thicker yet? Mine has finally started to grow again after 5months, whilst they sorted my thyroxine as sutent killed it off :-( Got to get some dye on it though as I'm not a subtle blonde like you I'm most definitely grey before my time.
Keep us updated Jane whenever you can so love reading your blog.
Jackie xx

ADB said...

You're certainly still on fighting form, Jane. The radiographer was a numpty and that's me being polite. As you say, 1 down, 4 to go and you'll lick it yet!

LYN said...



mortonlake said...

you are bloody amazing hun.way to go girl.i am so glad.radiographer is the brother of 1 i had take care

Daria said...

I'm just catching up on your blog ... I've been away.

Just wanted to let you know ... I'm pulling for you.

karen in ottawa canada said...

Superjane - my superhero! So glad to hear your spine is not involved - get those treatments and get that sutent in you, and keep on carrying on! Life is good. Hugs as always from across the pond.

Emma said...

Hi Jane

Nice to know the NHS can get moving sometimes (BEN Pct please take note). Are you going to get all the dots joined up into a design?