Saturday, 31 July 2010

Oh crap.......

On Tuesday morning I prepared my breakfast and a drink to wash down the first pills of my day.

I went to sit down and felt a slight twinge in my left buttock, my first thought was that it may be a pressure blister, so I had a feel. I have a lump inside my buttock!

First thought was it may be a Cyst, maybe wishful thinking.

Second thought was A&E or GP?

I spoke to Karen and she said GP, so I went to see her at 4.30pm.

She had a feel and said 'The good news is it's mobile, which is a sign of a Cyst... but the not so good news is it's very dense and that's not a property of a cyst'

She referred me to Sussex Cancer Centre (SCC), 'it could take up to two weeks to get an appointment, so I suggest you ring the SCC appointments desk in the morning'

So I did, and they got me an appointment for the week after next, and suggested I get in contact with my McMillan nurse who may be able to exert some more pressure.

So I did, she said she'd see what she could do, my Oncologist has a Clinic that day, Wednesday, so she'd try and get me into that.

She rang back in 15 mins and said Wednesdays Clinic is oversubscribed, but she's got me onto the Friday one......... RESULT!

'cos I'm scared now.

So I went to Sarah Westwell's (SW) Clinic yesterday at 1030am, a bit too early for Karen.
I saw SW and she examined me, along with a cute female trainee.

She said that she is assuming it is a tumour because of my history and asked if she could take a biopsy right away.

She ended up taking 2, no anasthetic, I was quite painful!?!.

She got a nurse in to stick a plaster on my arse, thats 4 people who've seen my naked arse this week, luckily I've never been the shy type.

She's also arranged for me to have a CT scan, marked as urgent.

I also had bloodtest for widerange testing.

Then I was out the door, after she arranged to see me on 11th August.

This getting scarier by the minute, I'm still in a lot of discomfort from the operation, and I may be having another soon.

I drove home on the verge of crying.

At about 4pm SW range me up saying that she had got the results back from the blood tests and she was a bit concerned because my Calcium level was 20% over the limit.

She wanted me to go to straight to SCC for a drug to be administered via a drip, otherwise by Monday I could have Constipation, stomach cramps and 'confusion' (nothing new on the last one said Karen, Har de Har).

More scary.

So I went there with Karen. The drug was administered, it took about 20 mins and made my arm very cold.

While I was in there SW explained the options I have, depending on the results of the CT scan.

If I have more tumours, thens it going to be Chemotherapy or a trial, which she said I'm probably eligable for again.

If it's just this one, then Radiotherapy, followed by surgery or the trial.

Here we go again.

She also told me to come back for a Blood test on Monday week to check the results of the drug.

I went to bed when I got back and thought about my kids, Karen and all my friends and started weeping uncontrollably until I fell asleep.

Today I went to tell my kids Tara and Oscar the news, a difficult conversation.

Saturday, 24 July 2010

Oops, my bad.

It's nearly 5 weeks since my operation and I've been told off by a few people for not updating my blog.

I'm sorry, I'm supposed to be taking things very easy, but not that easy.

I'm going to backfill some posts on the important things that have happened later.

My MacMillan nurse, Maggy, came to see me on Thursday and after hearing my life story since October, reiterated that I would need to take another month off to heal properly.

Although I feel guilty about letting the members of my watch at work down, she said that if I don't take the time to heal now, I will always feel in as much pain as I do now. Time to be shellfish I think (sic)

Went for a coffee or two at the Madeira cafe on my motorbike today with my daughter, a beautiful day in Brighton.

I then fitted a new gauge to my Coop, taking it easy.

Tuesday, 29 June 2010

Just how do YOU define gentle exercise?

I was discharged on Saturday afternoon after an idiotic search for the medications I took into hospital.
I eventually got fed up with waiting and we headed off without my most important medication in the hope that I could convince the local late-night pharmacy to issue me with a pack as an emergency.
As soon as we got home I went to bed and while I was asleep my meds arrived by cab, a Sister at The Marsden who knew what she was doing had found them in the pharmacy and had them sent down to Brighton.

On Sunday morning I woke up feeling pretty good, I'd been told by my physiotherapist to take it easy but to take light exercise, increasing every day.
It was a beautiful day and I was so glad to be out of hospital. So I decided to change the battery on my motorbike, that seemed like light work to me.... it went fine, but when Karen found out she wasn't very happy with me.... actually she told me off big time at the garden gate!
I took it easy for the rest of the day and on Monday morning I decided to gently wash my car (again gentle exercise as far as I was concerned). I took over an hour to wash it, moving slowly and carefully, it normally takes me 20 mins....
By late afternoon I was in major pain and went to see my GP, I was worried I may have an infection.

I had Karen with me and when my GP found out what I'd been up to since being discharged she rolled her eyes and looked at Karen and said that she was sure all men are stupid.....
Apparently after abdominal surgery you're not allowed to even fill the kettle for 2 weeks! (I'm going to go mad...)
She informed me that washing the car had put me at huge risk of getting a Hernia and putting me in line for another operation..... Hmmmm, I'm not ready for that yet.

She said I need to go home and stop being stupid, she did apologise that the Marsden hadn't given me written instructions about how to handle my recovery, and that
I've probably put myself back at least 2 days....

At least my car is clean and I can start my bike, shame I can't drive them for another 4 weeks.

I woke up this morning to find that a seagull had crapped on my car.... the ultimate injustice.

Or maybe there's just someone else in the queue trying to tell me not to be so stupid........

Saturday, 26 June 2010


It's Saturday, and what a week I've had.

I woke up sometime after the operation on Tuesday afternoon, in a lot of pain.
The first thing I did was check to see I had both feet, yes! they're there.

Karen and Tara were both beside me and I found out later that I talked a load of gibberish (no change there then) while the nurses tried to sort out my painkiller levels, this was complicated by the fact that they didn't have the notes on what I was taking prior to surgery!

I then slept until Tuesday evening in CCU (Critical Care Unit) and when I woke up I had a different nurse, Iain, who was brilliant and talked to me and looked after me superbly, he rolled up a towel and bound it with Sellotape to hold against the wound when I coughed, to stop the pain.

I fell asleep again. When I woke up I was in a huge dark room with hundreds of people in beds. I couldn't make a sound and noone seemed to notice I was there, I slowly became convinced that I had died and they were waiting for the Gurney to take me away. That was a wonderful feeling....not - I can only assume it was the bloody Morphine!

I fell asleep again and when I woke up I realised how bad my hallucinations had been, the CCU had 10 beds and I was still under one-on-one care.

I was transferred to a normal ward on Wednesday afternoon and said goodbye to my last (useless) personal carer. I was given a bed in a private ward because my care was of the level that I needed checking very 20 mins instead of continuous care.
They managed to get me out of bed during Wednesday, a day after my operation and over the next few days I improved quickly, by Friday I could walk up and down a flight of stairs unaided.

Friday was also the day that my last tubes were removed, the main drain was a real pain: as the nurse started to remove it I could feel part on my internals coming out, the pain was unbelievable and I screamed out so loud that she got really upset and refused to try again without talking to a consultant first.

Eventually some of my surgical team arrived and after trying themselves, they decided between them that the drain had attached and the only way to remove it was to surprise me, I was tensing so much every time they came near me that it was making it even harder to remove.... Prof Thomas injected local anesthetic around the entry point and down the drain and handed me an Entonox inhaler, said he'd be back in 2 minutes and instructed me to breathe through the inhaler.
One of the nurses was in on the plan and while she distracted me, Prof Thomas sneaked around the curtain, grabbed the drain and ripped it out of me.
SHEEEEETTTTTT, that hurt... but it was out - crafty bastard!
I thanked them through my tears and off they went to get on with more important things.

I'm still in a lot of pain when I cough and first straighten up from sitting
I'm ready to go home now, I just need to pass some solids and they'll let me go.

Monday, 21 June 2010

Lord Leggy Mountbatten.

I'm now (finally) checked into the Wiltshaw Ward at the Royal Marsden.
I've just been out for a quick pint and a snack by South Kensington station and I'm lying in my bed wondering what tomorrows surgery will bring.
To say I'm nervous would be a lie.
I'm f**king terrified!
I just washed and changed into my pyjamas and looking down I realised how much my legs mean to me.
They've carried me up mountains, swam me with penguins (no cliche dolphins for me), taken me windsurfing on beautiful seas, cycled me from London to Brighton several times, helped me drive fast cars and bikes and of course skateboard and rollerblade and I don't know how loosing one will affect me.
I know that Prof Thomas will do his best to let me keep it and that if it goes it will save my life, but it's a strong, healthy part of me and I keep getting the same nightmare of it stuck in a bin with the rest of the medical waste this place must produce.

I've asked the nurse to give me some sleeping pills. Hopefully I'll be out cold soon.
When I wake up in the morning I'll have a shower then a chat with my surgeon about what he's going to do.
Then I've got to sign the consent form for surgery to go ahead.
Karen and Tara will be here all day tomorrow, so they're going to find out what he did a day before I do, they're keeping me unconscious for 24 hours after the operation.
Good night folks, think of me.... all prayers happily accepted.

Saturday, 12 June 2010


I received a letter today from the Marsden, I'm being admitted on Monday 21st at 2pm.

Prof Thomas had said he'd push for me to be admitted the day before the Op but with beds at a premium, the admissions people don't like that.

So he got his own way, I thought he would.

I'm happier with that too, I wasn't happy with the idea of rushing to be there at 8am before my operation.

So I went to do a bit of digging, I'm a bit apprehensive about the operation and the effect it will have on me, I needed some time to think - so I went to do some digging at my allotment.

I'm sitting here in the back garden after hanging laundry and I'm writing this. My netbook is so nice to use, I can just sit down anywhere and write.

Thursday, 10 June 2010

I have a date!

Just back from The Royal Marsden and I'm full of cottage pie, thanks Karen!

I waited 1.5 hrs to see Prof. Thomas.

He examined me... Ouch! (he apologised every time I winced)

He wants to go ahead with the operation to remove Clive as soon as possible.

He said the chance is high that it will start growing again and although more Radiotherapy could reduce it again, he wouldn't be able to operate after more Radiotherapy.

Apparently the damage caused by Radiotherapy makes operating more difficult, the exposed tissue becomes hardened (fibrosis), in fact if he doesn't operate soon he will not be able to operate at all.

So basically, this is my one shot at an operation.

He will be removing my Psoas muscle, which is where the tumour starts and this will affect the way I use my leg, I'm not sure how. He says I'll still be able to walk, without sticks, but I think I won't be able to lift my leg in the normal way.

I am booked for an operation at the Marsden on 22nd June, with health assessment next Wednesday (to make sure I am fit enough for the operation)

I can say no to the operation any time up to the Anaesthetic being administered, but I don't think I will.

I may have to get drunk tonight and do a lot of skateboarding this weekend, maybe the last time ever.

Saturday, 5 June 2010

Barbecue blues

I've got an appointment next week.

I'm going to to see Prof. Thomas (PT) on Thursday to talk about a possible operation to remove whatever's left of Clive.

I spoke to Sarah (my oncologist) about the surgery last week and about the decision I will probably have to make:

PT will probably suggest that I can keep Clive, with regular tests to make sure he''s not growing again.

Or go for the surgery....

The surgery carries a lot of risks because it's close to my bowel, and there will be a lot of fibrosis caused by the Radiotherapy, which makes the operation difficult.

I could end up in intractable pain.

To save you Googleing it (should that have an 'e' in it?), that means constant, untreatable pain. The next step up the pain tree from Chronic.

I don't know if I can deal with that.

So, the decision suddenly becomes one of the most important of my life.

Do I subject the ones who love me (or some I just love) to me being driven slowly mad by pain, or do I just live with Cancer (Clive)?

I'm writing this after a successful Barbeque, seemed to be cooked perfectly, all at the right time and I'm sitting here in the garden writing this on my new Netbook.

Everyone's sitting inside watching 'Britain's got talent' and I'm in the garden, experimenting with Cocktails.

I'm definitely pissed.

I'm working in the morning, so I have a decision to make....

Which 'toy' should take me there?

Decisions, decisions, , decisions, decisions, AAARRRRRGHGGGHHHH!

and it looks like Clive lived up to his original mission: to make my life hell.

Wednesday, 19 May 2010

The battle with Clive could soon result in a Win for the good side (how 'now' does that sound?)

I went to see my Oncologist today for the results from last weeks CT scan.
They showed me the scan alongside the original one taken back in January.
This was to show the effect of the Radiotherapy I had.
The tumour (Clive) has shrunk by a massive amount, it's now 1/4 of the volume it was back then, 1/16th the volume it was when I started Radiotherapy in March.


My oncologist originally said the best they could hope for was to stop its growth.
Now she has recommended me for surgery to remove what's left, when in January they were saying it was inoperable because of the type and size of Clive.

We're all over the moon with this unexpected, brilliant news.....

I should find out next week if the surgery has been approved by Professor Thomas.

ps for those who are confused by the sudden appearance of lots of new posts, I'm filling in the gaps. It's probably regarded as a bit naughty in the Blog world, but (as Lilly likes to say) what the hell....

Tuesday, 6 April 2010

Bars, bikes, nights off.

I used my bike for the rest of the shift, the weather was OK so it was fun, plus I didn't want to give my car another shot at taking me out - third time lucky eh?

I've decided that I'm most interested in a Fiat Coupe as a replacement, I love the styling - it's different and practical(ish)

All I've got to do is find one I like.

Checklist is: turbo, Aircon and sunroof. I love this colour, Portofino Blue. It even sounds good.

Friday, 2 April 2010

My car's trying to kill me, part deux.

Brilliant; after last weeks debacle with the tyre blow out, I'm starting to think my car is called Clive as well.

As I left Brighton on the A23, I accelerated away from the Rabbit roundabout (amed by the kids as it's always full of, you guessed it, rabbits).

All of a sudden my bonnet flipped open against the windscreen at about 70mph totally removing my forward vision.

I quickly checked my rearview mirror, nothing following for some distance, so I flicked on my hazard lights, stopped in the outside lane, leapt out of the car and pushed the bonnet down.

I got back in, moved into the inside lane and drove at 30mph to the nearest layby.

I managed to get the bonnet to latch down by bouncing up and down on it with my bum.

Then I carried on to work.

Another case of 'beyond the call of sanity' methinks.

I was lucky, normally (even at that uncivilised hour) the road is fairly busy, but since it was (not so) Good Friday there was less than usual traffic.

I spent a very quiet day at work looking for a new car on e-bay and Pistonheads, 'so many cars, so little time' (sic).

I have already started a claim on my critical illness insurance, so I am expecting some money through soon.

I just don't know what car to get to replace my (formally) beloved Alfa, I fancy a change of marque.

I've always loved Italian cars, maybe I should get a Ferrari?

Bump, back to ground again, it's got to be at least a bit practical, Maserati?

Or even the most beautiful car ever made, a Lancia Fulvia with that lovely wooden steering wheel.

Decisions, decisions.

I decided to come in by motorbike tomorrow, I've been riding it around Brighton a bit and it hurts less than driving a car.

Sunday, 28 March 2010

My car's trying to kill me!

First nightshift and on the way to work driving at slightly over the speed limit in the outside lane of the M23 in fairly heavy rain, my car started weaving..........

I pulled over pretty quickly, luckily stopping under a bridge.

My rear passenger-side tyre was completely flat: bugger!

So I emptied the boot of assorted crap onto the back seat and changed the wheel for a skinny spare.
This is definitely not what I want to be doing in my state.

I got to work half an hour(ish) late, full of apologies and in a fair amount of pain.

I spent a very uncomfortable night at work, I didn't feel like driving again so soon.

That's the thing with us Civil Servants, dedication beyond the call of sanity!

Mind you I'd had a fairly large swig of OraMorph when I got my car parked. (by the way that's oral Morphine for the uninitiated) and that's when I started to think my car's trying to kill me (does Morphine cause paranoia?)

When I got home this morning I looked at the wheel I'd taken off - there was a hole in the sidewall that I could fit two fingers in. I must have hit a large lump of something sharp on the road.
I'm just glad it wasn't a front wheel, that would have been interesting in that rain!

I slept like the dead and decided not to go to work the second night tonight, I'd already warned my shifties that that was on the cards.

Friday, 26 March 2010

First day back at work (reluctantly)

Last night I made sure I had all my meds for the day and this morning I headed off for work.

I'd forgotten what 5am looks like, grey cold and not at all like sleeping in bed.

I spend a very weird day at work, reactions from my workmates was very mixed ( I had been told to expect that).
Some thought I was mad to go back, even when I explained my motives, other were happy to see me back.... and more than one looked at me with what can only be described as fear (I really thought everyone knew cancer is not contagious)

I felt tired really quickly, but that used to happen after 2 weeks off during the summer.

My old mate Dave has left while I've been off, he managed to convince BT to pay him £30k to leave 6 weeks before he was due to retire, admittedly he never told them whether he was going to leave on his retirement date anyway.

I was really glad when 7pm came around and also happy I'd made the decision just to work my second day, I've always found the days more tiring than the nights.

Home again I had an early night.

Thursday, 25 March 2010

I hate it but....

After a lot of soul-searching and looking at my bank account and with clearence from my GP I am going back to work tomorrow morning (up at 0445hrs).

I really don't want to but I would be going on to half pay on 2nd June.

I don't have any appointments until the end of April and a lot of my pain has gone.

I should be getting a scan at the end of April/early May and then the obligatory 7-10 days wait for the result would take me very close to the above cut-off date before I start (possibly) any Chemotherapy.

One thing I forgot to mention in my last post is that the consultant said I would not be considered for any trial until a scan shows my tumour starts regrowing - the Radiotherapy has excluded me from consideration.

Chicken and egg situation I think.

Monday, 22 March 2010

A waste of time....

Well, I went to the Marsden on tuesday and when I was eventually seen by Dr Larkin, he said that there was no point in considering me for Chemotherapy until they found out the effects of the Radiotherapy. No s**t Sherlock.....

So, they've passed me back to Sussex (Brighton) Hospital with the recommendation that I have a scan in 4-6 weeks time to see the effect.

The only good things to come from this meeting were that I had a fun ride up to London on my Motorbike (it was a beautiful sunny day) and that I met up with Caroline to catch up on old times.... (thanks for the coffee and the Chocolate Croissant)

Oh, and for my next meeting with Dr Larkin I won't have to go to the Marsden in Chelsea, I can go to the one in Sutton, a bit closer and without the heavy traffic and parking problems of central London to contend with.

2 days after the meeting in London I got a letter from Brighton Hospital with an appointment at the end of April....

So. I'm thinking of going back to work.

I've been reading a lot, but I need to keep my mind going, I need the problem-solving environment.

Plus I'm concerned that I'm going to run out of my 6 months full sick pay. On 2nd of June I'll go onto half pay and at that point I would no longer be able to pay my half of the mortgage, that would bring extra stress on me which I obviously could do without.

Friday, 12 March 2010

The power of the Blog?

After my rant last night...

This morning a fat envelope dropped on our doormat.

I have an appointment to see Dr Larkin at the Royal Marsden on Tuesday...

( feeling a bit embarrassed now)

Thursday, 11 March 2010

Bloody Guidelines...

On monday morning I had my last session of Radiotherapy.

After it I had a long talk with my consultant about all the things that have been going through my head, like:
How much was Prof. Thomas' decision not to operate influenced by NHS policies? why he won't operate when it's a Melanoma, when it would have been appropriate to go ahead on a Sarcoma ( the original diagnosis)? what's the chance of me getting on a trial of one of the new wonder-cures for cancer being run at the Marsden?
Those and lots of other things that I think about in the middle of the night when I can't get back to sleep and the nasty little thoughts are flying around, just below the ceiling above my bed. (gotta love that Morphine)

Sarah (my consultant) told me she's written a letter referring me to the Chemotherapy Consultant at the Royal Marsden (another question.. why hasn't she sent it yet?) and he'll talk to me about the treatment that he's considering for me.

I don't hold much hope for that, apparently Melanomas don't respond to Chemotherapy well.

She also told me that there is a trial of a new treatment, that has a requirement of a certain marker in the biopsy and that this marker is present in the biopsy taken from me back in January at the Marsden (hope building here) but that the Marsden had had a problem with a previous patient who had the same marker when tested by them, but that when a test was carried out by the American Drug Company on the same biopsy (according to the guidelines of that company) they found no trace of the marker and so the patient was not admitted to the trial.... hope dashed, broken on the rocks and washed away by the breaking surf.

Seems I'm not in control here, NHS timetables (which make tectonic plate movement seem fast) and the fact that Clive is so unusual mean that noone has any idea how long I have to go.

Anyway back to how I feel, I was warned of all sorts of side-effects from Radiotherapy, the only one I really have is a lot of tiredness and a feeling that Clive has grown (apparently down to normal swelling)

So now all I have to do is wait...

Wait for the swelling to go down.
Wait for an appointment at the Marsden.
Wait for any increase in pain which will trigger another scan (or a wait for one)

Apparently if I had Breast or Lung Cancer there'd be no wait. NHS guidelines again.

Tuesday, 2 March 2010

Are we nearly there yet?

Today I'm halfway through my Radiotherapy.

The session this morning was interrupted by the machine locking-up halfway through my treatment. My 20 seconds from the back had been done and after the head repositioned itself above me I got a 3 seconds blast then it stopped.

The Radiographer came round and apologised and they called out a tech!

Apparently it happens regularly and they're trying to find out why by dumping logs and analysing them, sounds like Unix to me.
Once they'd done that they rebooted it and carried on. I only got 17 seconds this time....

The Radiographer said they'd taken an image as well as doing the treatment, I'd better ask about that tomoz, the treatment was at 0815 this morning and since I'm starting to get tired after the treatment, I just wanted to head home to bed....

Apparently the treatment doesn't have much effect until the second week any way.

Soz it's a bit of a boring Blog, but I'm getting more tired.

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.