Wednesday, 24 February 2010

Brilliant news! I'm not a Christmas tree.

Seond day of Radiotherapy, exactly th esame as the first.

While I was waiting I saw myself in the mirror, I looked like a mad professor!

So I decided to get my hair cut on the way home.

Queued for 20 mins in Barber Blacksheep ( my favorite named Hairdresser) 20 mins later I looked soooo much better. (see it's not just you girls who get a lift from a trip to the hairdressers)

Just after I got home I had a call from my favorite Radiotherapy Consultant, Sarah (surname excluded to protect the innocent).

She'd got the the result from my PET-CT scan in super-quick time. I have no other sites related to Clive, he showed up though which means that the results are valid.

Amazing news, an unbelievable lift for my spirits gonna have my afternoon siesta with a big smile on my face.

Tuesday, 23 February 2010

And so it begins.....

I started Radiotherapy today, I felt pretty odd all day, so I went to bed at 4pm and got up at 8pm when my meds alarm went off.

I't's wonderful to be getting treatment at last!

This is a picture of my Radiotherapy Machine. Boring , but I love big science

The Radiotherapists were very attentive, they kept asking if I had any questions to ask.

I did ask to look at my file to see the planning scan done last week and another copy of it with the X-Ray beam paths marked on it.

It was uplifting to hear that they are willing to spend as much time as I need talking about my treatment and how I feel emotionally.

Monday, 22 February 2010

Anyone want to test their Geiger counter?

PET-CT scan carried out, so boring I fell asleep.....

3 hours being rolled very slowly through a very expensive machine, they had to knock gently on the scanner bed to wake me, in case I fell off, there's no A&E at Sussex University.

Apparently there are only 10 of these machines in the UK.

I thought it was going to be a CT scanner with the added dimension of a radioactive injection, but no, the machine actually say PET-CT on it.

And it was a bit weird being injected with a lead syringe by a doctor in a radiation suit!

I'm hoping they'll have beamed the scans to Sussex County Cancer centre where I'm going for my first Radiotherapy session tomorrow.

At least I have a good excuse for not cooking tonight!

Sunday, 21 February 2010

Me the Christmas tree?

Tomorrow I'm going to Sussex University for a PET scan.

For those that don't know this involves being filled with a radioactive Glucose solution then i'll be put under a CT scanner.

Since some cancers like to take up the Glucose solution they'll show up on the scan as a glowing area.

This is in order to find out if I have tumours growing anywhere else on my body.

If I do I'll look like a Christmas tree on the scan.

Nervous or what?

Tuesday, 16 February 2010

Why is everyone looking at me sympathetically?

I went to Brighton General Hospital to have my skin checked by a Dermatologist today, he found 2 areas of concern, a mole I've had forever - but he chopped it off anyway, and a pale patch of skin on my leg that looked like a wart for a few years and then disappeared one night leaving a 2inch patch of pale skin, from which he took a biopsy.

I also had a long conversation with my Radiologist who showed me the planning scan they did last week and the one done back in December.

Clive has nearly doubled in size!

So she's decided to change the plan for my Radiotherapy from 6 weeks to 2 and then refer me back to The Royal Marsden for Chemotherapy. (that's weird, 'cos chemotherapy doesn't work on Malignant Melanoma)

It's all looking like they're just doing what they can to make me comfortable now.

And they're all looking at me uncomfortably and sympathetically.

Sorry if this all sounds a bit negative, but that's how I'm feeling right now.

Thursday, 11 February 2010

Good times, bad times.

Fantastic news today (for me it was anyway)

I went to CT lab in Brighton for a planning scan plus 3 free tattoos (I asked for a lions head and 2 seagulls, they rolled their eyes)

With the CT scan over (see left), the Nurse asked me to get dressed and then gave me a sheet with the words 'Here's your schedule'.

I've got my dates for treatment.

I start on 23rd Feb and finish on 7th April, 5 days a week at differing times.

I almost skipped out of the Lab!

I sat outside and smoked a cigarette (yes I know....) in the sun, grinning like an idiot.

Then like an idiot I decided to change the fanbelt on Karen's car, it took 4 hours instead of the healthy Ians 1-1.5 hours. And Clive hurt like hell afterwards.

I've got to remember that I'm very ill, it's difficult sometimes to pull back from the things I used to do. I sat in the kitchen feeling very sorry for myself, I cried.

Wednesday, 10 February 2010

More dates.

I now have dates for planning CT, tomorrow (11th Feb), Dermatologist (Tuesday 16th) and PET scan (Monday 22nd) but it all seems soo slow.

Tuesday, 9 February 2010

First date.

I had a phone call from Brighton Hospital today (well monday morning, must go to bed ealier).
I've got an appointment for a CT scan to plan my Radiotherapy.

At last things are moving, that sure raised my spirits.

I've been pretty depressed over the weekend, because after 2 months of knowing I have a tumour, I've still had no treatment for cancer.

Saturday, 6 February 2010

New drug, new me.

I tried the new painkiller for the first time last night, an hour later I went to bed - a miracle -no pain on lying down for the first time in 3 months!
I slept right through and took another this morning, I hope to be able to stop the Morphine if possible.

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.