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.