Friday, 5 February 2010

Catch up.

I guess I should have started this before now, so here's a bit of a catch up.
Sorry it's a bit long, my bad for not starting earlier.

Back in September 2009 I was out skateboarding along Brighton Sea Front with my son Oscar.

After a couple of beers, on the way back I came off at speed and landed on my right cheek (the one you sit on), it hurt, but then falling does hurt.

I thought nothing about it really, the beers numbed the pain, of course, plus I've always been a bit physical so I'd had my fair share of bumps. 'No pain, no gain' is one of my mantras, along with 'If it don't hurt, you're not trying hard enough'.

I know, the word 'twat' comes to mind......

A month later I was still getting pain in my hip and it was increasing; this was not a bruise.
I thought I'd better take it easy and start using anti-inflammatories to control the pain.

But by November it was still getting worse and with fears of possible prostate cancer in my head I booked a visit to my GP.
She sent me off for a blood test to check for Prostate Cancer and an X-ray to check for a fracture in my hip.
Both came back negative and as a bonus, my kidneys and Liver results were good too. so she said she'd book me into Urology and said that if the pain got worse to go to A & E.

The night of 2-3 December 2009 I was in so much pain that I couldn't sleep, so I got on my motorbike in the morning and went to A & E.
They immediately admitted me for tests.
The lovely Karen brought me books, fruit and sympathy.

By Thursday they had decided that I had an abscess on my Appendix and I was booked in for surgery on Monday to remove it, meanwhile I was to stay in and be fed anti-biotics intra-venously.

I didn't respond to the anti-biotics so on Monday the surgeon wasn't happy to open me up on evidence from the CT and Ultrasound scans and sent me for an MRI.
On Tuesday morning they came to tell me I have a sarcoma wrapped around my Iliac vessels (the blood supply to and from my right leg) and I was to be referred to The Royal Marsden in London under the care of Professor Meirion Thomas, an acknowledged expert in Sarcoma and Melanoma..


They kicked me out that afternoon, with a big bag of meds to get me through the pain. The lovely Karen was there waiting for me with jump leads to start my bike.

A few days later I got my letter with a date of 30th December to see one of the most respected Sarcoma and Melanoma surgeons in the world.

Obviously Christmas was a bit odd. (thoughts like 'is this my last one?' kept crossing my mind).

Around this time I decided to name my tumour Clive after my worst enemy at Grammar School. (aided by the fact that I don't currently know anyone called Clive, of course)

30th December 2009:
I went to TRM and met the revered Professor Thomas who performed two biopsies on the tumour and took the tissue to Pathology while I waited. He said that the results would take 7-10 days.

6th January 2010:
Prof Thomas phoned me to say "I'm surprised and delighted to inform you that tumour is benign. But, I want another biopsy taken to be sure because the appearance on the MRI is of a Malignant tumour."

AARRRGH! (that was my brain screaming)

15th January 2010:
A week later I went in for second biopsy under CT scan to make sure they got the right tissue this time.
They kept me in bed for a few hours of regular Blood pressure checks to make sure they hadn't taken a sample from my artery and that I was bleeding to death....

A surgeon on Prof Thomas' team filled me in on the difference between the surgery for Malignant or Benign tumours
I was in a lot of pain by the time I got home - but it's big part of my life now.

28th January 2010:
I rang TRM to check if my results were back - they said no, they'd ring me.

I just wanted the date for the operation to remove Clive from my life and stop the pain.

30th January 2010
Prof Thomas rang me and informed me that the result from the biopsy unfortunately showed I have a Secondary Malignant Melanoma... cold sweat started on my brow.
He said that in his opinion the best way ahead is to treat Clive with Radiotherapy and that he'd be referring me back to Brighton.
He thought that surgery was out of the question.
"Thanks" I said, any questions I had just flew out of my brain on the words 'Malignant Melanoma'.

A few hours later, once the questions had resurfaced I rang TRM and I got to speak to the Melanoma nurse, Sam, who answered them and more. She said that the Cancer Dept in Brighton are a top team (no more travelling), that the reason that it's called a secondary is because the primary Melanoma must have been healed by my body already (that explains why I have a Malignant Melanoma on a part of me that never sees the sun, even I'm only wearing speedos)

The waiting is killing me.........

This morning I went to Brighton Cancer Centre with Karen and met my new specialist. After a long talk with her and an examination of my Lymph nodes on crotch, neck and armpits "that tickled!", she came up with her plan.

She wants me to see a dermatologist and to have a PET scan to see if there are any other cancer sites in my body before she starts hitting me with Radiotherapy - it's no good treating the one if another is growing elsewhere which could be treated at the same time.

She also wants to have my left kidney checked because there is a chance that the radiotherapy could damage my right one, leaving me with none!

So.. another 3 weeks of waiting.

But on the plus side she suggested a different drug to control my pain. That has got to be a big plus actually, I had some of the worst nights of my life recently.

So here I am nearly 2 months after finding I have a tumour and I've had no treatment.
Sure the pain's being managed better but I want, no I NEED some treatment.

1 comment:

  1. Hi Ian - have just now been brought up to speed with things & you... good idea that about 'clive' and killing him!! fab news of the pain killer - what a relief for you. lack of sleep is a bummer and a nerve wearing. How's things going re physical movement ? Meditation comes to my mind? lolxxCaroline Castle