Wednesday, 28 November 2007

Well they found it...! brain that is. The MRI scan confirmed that I do (contrary to some people's misconception perception) have a brain - a remarkably well formed one at that! Oh, and from a tumour point of view the scan appeared to be clear, which leaves the small nodule in my lung as the only identified/visible active tumour. As it stands I'm still waiting for a date for surgery. Normal Royal Marsden service resumed when the surgeon never received the CD of my scans. After much chasing and hassling I managed to get a replacement disc sent, only for them both to arrive on the same day, 2 weeks after my referral! I was hoping to get in quick and be out in time to be relatively fit for Xmas but I should know better than to make plans...!

Monday, 19 November 2007

..another update.

Well I know it's been a little quiet this end - symptomatic of the fact that I'm currently playing the waiting game. My original date for the PET scan was delayed due to the scanner breaking down, which put me back a week. I finally had the PET scan last Wed and met with my consultant to review the results on Friday. The PET scan re-confirms the small tumour in my left lung is showing some activity but that the scan did not pick up anything else (or anything that's within the scanners sensitivity), so it looks like surgery is definitely on the cards. The week before I had asked about the chances of cancer spreading to my other testicle and a week later the consultant 'suddenly' suggested arranging an ultrasound scan of my 'bits' (which were clear) and a MRI scan for my brain - 'just to make sure'. The MRI scan is scheduled for today and I should get the result later in the week - thats presuming they can find my brain!

Monday, 29 October 2007

The morning after the weekend before...

Well I crossed my fingers but should have crossed toes as well. The CT scan showed the tumour in my right lung unchanged and my tumour marker has started to increase. The upshot is the high-dose chemo has not had the desired effect.  The view is that my cancer has become chemo resistant so they see no benefit in going through high-dose chemo and its own associated risk again - it's back to the surgery route as a last option.

I'm due to have a PET scan in the next two weeks in order to check there is nothing else to worry about and then I expect they will get on with surgery pretty quickly - same operation as I had in June but on my right-side. At least I'll have matching scars - it'll look like its where my angel wings have been clippped.

Wednesday, 24 October 2007


Back to my favourite place today - The Royal Marsden for post-transplant check-up and a CT scan. The blood-test showed my blood has recovered remarkably and its essentially back to normal following the high-dose chemotherapy, which means they can schedule me in for the second lot - 2 weeks today! Thats dependent upon the results of the CT scan and tumour markers, which I'll receive on Friday. It's a strange thing hoping that they'll let me have another hit of high-dose chemo and another transplant - but its infinitely more preferable to them deciding its not worthwhile. High-dose here I come...fingers crossed!!

Saturday, 13 October 2007

He's coming home...!!!

Well, a bit of a surprise. The doc came to see me this morning, confirmed my blood counts had risen again and then he casually mentioned I can go home today!! They must need the bed or something!

Have felt much better over the past couple of days. The Urology consultant came to see me yesterday - he was surprised to see me looking so well - it's not normal. He'll arrange tumour marker and CT scan tests over the next couple of weeks before assessing the next step.

Here's a pic of my humble abode. I gave myself a no.2 trim yesterday as my hair started coming out in clumps. Not a problem if I missed a bit with the clippers - I simply pulled out the offending hair and voila!

I can't say I'll be sad to leave but the room has been fine, the nurses have been great, the foods been OK(ish) and the chemo bearable. I'll take that!

Gonna feel a bit funny being back at home. Michelle has a stinking cold so I guess I'l be in the spare room tonight - not that I have the energy for anything else!

Thursday, 11 October 2007

Back in the land of the living....

...well, just anyway. Past week has been a blur of sickness, diaorrhea (can anyone spell it?) and excruciating stomach pains as the chemo side effects took hold. As well as my mobile giving up he ghost a week ago (apologies to those messages I havent responded to) I've been too unwell to even sit at the PC. I was basically in the position whereby of I didn't eat, didn't drink and didn't move I was OK'ish. Didn't eat for 4 days, been on IV fluids to keep me hydrated as I couldn't be bothered to drink. And I've had reminders that "I should have had the nasal tube put back in" every day from the nurses - well I've been sick every other day so what would have been the point.? Just started to eat a few cornflakes over past couple of days and feeling much better. My blood count is at its low point and my hair is now falling out in clumps, but I feel I'm on the up (a bit like the Toon!). The only trouble with eating is that I am back exposed to the vagueries of hospital food, which is enough to make you lose your appetite even if you are fully healthy!

There's light.....and it's not a train coming.....I hope!!

Friday, 5 October 2007

Gets up my nose!

Well it was rather uncomfortable to say the least. Sticking a bloody great big yellow tube up my left nostril with the intention of then threading it down the back of your throat and down into my stomach. And all so that they can drip-feed me if they need. "Give me some decent food and I'll eat it!", I say!. After two attempts on my left nostril and my eyes already streaming they give up and go for my right nostril! A push or four, pain, watering eyes, a few gulps and its down, "Ooh, just a bit further", push, swallow, and its in. It's not nice, believe me. An x-ray confirms its not far enough down, so a few more pushes and its taped into place, looping attractively from my nostril to behind my ear.

The next morning after no sleep due to worrying whether I'm going to dislodge my nasal umbilical cord I'm turfed out of bed for a shower. Feeling fine one minute, then a little queasy the next. Being sick while having a nasal feed tube is not a good idea. It takes me a few seconds to realise why I have one end of a long tube hanging out of my mouth and the other out of my nose.....not a pretty sight! I've seen this trick on TV...nasal floss! It isn't nice and of course it means I'm gonna have to go throught insertion process all over again!

Tuesday, 2 October 2007

Transplant Day!

The 'big' day arrived as somewhat of an anticlimax. The perception of a transplant sounds rather grand but in fact involves one nurse wheeling in a Dusty-bin type contraption in which my frozen stem cells (which were a lovely salmon pink colour) are stored, a defrosting bath in which the stem cell bags are then immersed at 40 degrees , before they are transferred to about a dozen large syringes, whence they are pushed up my PICC line by another nurse with a bionic thumb!

One side effect is the smell of sweetcorn, due to the preservative used to store the cells. Apparently it will emminate from within me for the next few days - not good when you're already feeling nauseous!

Due to have a nasal feed tube inserted tomorrow so they can feed me a liquid diet (Guinness, Tennants Super?) while I am asleep.

Monday, 1 October 2007

I'm not here!!

Hope no-one was planning on visiting today! I'm not here (or there). I've been allowed out on bail for 24 hours. Finished the 4 days chemo on Saturday night and seeing as though it hasnt hit me yet, they've allowed me home for 24 hours. Due back Monday afternoon in time for my stem cell transplant on Tuesday.

Haven't been too bad after the chemo. Bit tired on Friday, but even managed to do some work on Thursday. Energy levels gradually falling, taste dissappearing, stomach whirring but could be worse - no doubt it will be!

Thursday, 27 September 2007

I'm here!

Day one and nothing unusual. Been here 8 hours and still waiting to receive some chemo - a record for even the Royal Marsden. Didn't get my PICC line in my arm till 5.30pm after trying both arms, but still waiting for doctors to sign it off as ready to use.

Oh, as I speak (sorry, type) , my chemo has arrived. Due to have Carboplatin for an hour, Etoposide for 2 hours, then another 2 hours of Etoposide, then 4 hours of fluids. Looks like I won't be getting much sleep - my pump sounds like an industrial hoover and I'll be woken every 2 hours.

On the plus side I have one of the bigger rooms on the sunny side of the building. The TV has an integral DVD player rather than the usual video player, I have an internet connected PC in the room (which has Skype and I have a web-cam attached so you can see what a state I'm in) and the chicken and mushrooms for dinner was quiet palatable.

Feels like I've been here before - though 3-4 weeks full-time is a bit different to Mon-Fri. Tired already so will update in the morning.

Well, its morning now. 1 days chemo finished and I'm feeling OK, apart from the effects of the broken sleep. Back to measuring my fluids in and out - I wonder if I'll beat my record of passing 1.1 litre - which was a problem at the time as the container was only 1 litre.

Note for visitors (that's if anyone manages to find the place, and then isn't overcome by the strange combination of antiseptic and hospital kitchen smells that hits you when you walk in the entrance):

1. You have to wash your hands (I realise thats going to be unusual for some of you) with antibacterial gel and put on an apron before entering my room.
2. I'm not allowed to eat fresh-fruit so no grapes please!

Tuesday, 25 September 2007

Last Supper!

Thanks to all who surprised me at the meal last night - great to see you all to celebrate (?) my birthday and spoil what I thought was going to be a quiet romantic meal with just Michelle and I - it felt like my last supper, though thats officially tonight. Lasagne, and I'm cooking!

It's surprising how much rubbish there is to sort out when you realise you are not going to be at home for three or four weeks. I've cooked up 21 meals for one which should keep Michelle going for three weeks. I'll likely be on a liquid diet in a week or so, that's intraveneous, not Guinness.

Luckily Alicia, our au pair, arrived from Spain on Saturday to take care of Lauren (and Michelle). Michelle and I have adopted involuntary hand movements to accompany our protracted English prose as we try and explain to Alicia how to cook an egg. More worryingly is she didn't seem to know what paella was.

I'll be packing this evening, not that I'll be needing much. No doubt I'll be taking sufficient electronic gadgetry to blow their ring main. Gerry, I may need to enlist your help hacking onto the hospital wi-fi network. Knowing the Royal Marsen their password will be 'password'.

Thanks to all the kind offers of visits, most of which dissipate once I actually explain where the Royal Marsden is. Still, I guess you can book 'rent a visitor' on the internet if I get desperate.

I'll hopefully be able to get online and keep you up to date, otherwise watch out for smoke signals eminating from south London.

Tuesday, 18 September 2007

Counting the days...

....well I would be if I wasn't too busy with work!! (I have to say that in case Chris is reading this...)

Having some pre-chemo tests on Monday - check if I have a heart and it has all the right bits and ditto my kidneys. I guess I'll omit to tell them I'm planning on hammering them at the weekend in honour of my XXth birthday. God knows what two pints will do to them!

Then I've got to have a permanent line put in - either in my arm like last year or a Hickman line which goes into the main vein in my neck (going for the jugular) and then runs under the skin downwards and pops out in a port on my chest. My vote is for one in my arm - reckon a Hickman line will ruin the profile of my pec's when wearing a shirt!

..and yes Pete I have some funny southern friends definitely think my northern friends are a funny lot...!

Wednesday, 5 September 2007

A Date!!

My recent scan showed no real change (which with my history I took as good news!). Still two small nodules on my right lung, one of which I think is benign. No evidence of any new tumours or spread! Tumour marker has come down to 44 so the tumour is responding to my chemo.

The 26th Sept (2 days after my birthday) has been scheduled for starting my transplant - I was offered the 19th Sept but didnt fancy spending my birthday in the Royal Marsden. I'll have 4 days of high dose chemo, then 2 days later I'll have my stem cell returned. Usual chemo side effects but a degree worse. The chemo will annihilate my bone marrow so my blood count will be very low for 10-12 days - apparently without the stem cells transplant it would take 6-8 weeks for my blood to start recovering. So I'm looking at 3-4 weeks in hospital. Visitors welcomed unless they've got the sniffles or a small baby!

Meanwhile, reckon I'll get on and do some work..!

Thursday, 30 August 2007

A plan....nearly..

Well looks like I had my last chemo (for now) last Friday. They (the 'experts') have decided that whilst the tumour is responding that its not responding as well as it could be (my tumour marker is coming down but slower than expected), so they want to press on with high-dose chemo sooner, rather than give me another cycle of the current stuff. They need to give me 4 weeks for my blood to recover so they are planning on me going in toward the end of September.

That means I'll miss out on yet another holiday at the end of Oct which was booked at the beginning of the year! My sister gets to go in my place to keep Michelle and Lauren company, or perhaps babysit while Michelle's out every night (it is with MarkWarner so I doubt Lauren will be left by herself!).

Got a scan today to check how big the tumour is and if there are any more! Fingers crossed!

Tuesday, 21 August 2007

Cycle 3, Week 1..a record!

Well the Royal Marsden excelled themselves last Friday. Got there at 0930, waited till 1130 to see the consultant (well it was actually a doctor...I think the consultants have started to avoid me as I complain too much!), waited 2 hours for the chemo to be released but still managed to leave by 1730 - 2 hours earlier than usual!! Tumour markers are starting to come down a bit so looks like they'll be giving me another cycle (4 in total) before the high dose chemo. Have a CT scan booked next Thursday to check progress.

Michelle started her new job yesterday so I'm house husband this week, looking after Lauren until she goes on her hols next week. Michelle came home last night and thought her brain was going to explode - she's not used to this working lark - that makes two of us!

Monday, 13 August 2007


We are top of the league, we are, we are top of the league!!

By the votes on the poll (below right) only me and Pete have voted and I'm obviously correct in assuming Newcastle will finish highest. Rob, I'm sorry I couldn't include Sheff Wed but they're in the 6th division or something aren't they.

Been on a wee holiday at the Royal Marsden since Wed. Popped along for my stem cell blood test and they admitted me due to an infection in my arm from when I last had chemo and put me on IV antibiotics.

The upside was that I would have had to drive back on Thur anyway and on Thur my stem cell count was high enough for harvesting, so on the machine I went (after they tried 6 times to get a bloody great needle into my infected arm). Spent 4 hours praying they would collect enough that I wouldnt have to be harvested on Friday as well. This meant collecting more than they did on each of the previous two occassions. They were looking for a total count of 4 ( 4 what I have no idea - I presume its not 4 stem cells?). We ended up with 3.86 which I convinced them with a bit of aritmetic rounding was near enough!

Had to have a platelet and red cell transfusion on Thursday evening to cope with the pending visit of my boss on Friday morning (only joking Chris). Hoped they'd let me out on Fri but my temperature was still a bit high and they wanted to re-check my blood count. I turned up the air-con to max and low and behold my temperature had dropped by Sat morning and I was finally given parole and allowed home.

.....and the Toon walloped Bolton on Sat. Did I mention who is top of the league....?!?! Ted, whose that at the bottom??

Tuesday, 7 August 2007


Well Alton Towers was worth it just to see Michelle's face as she headed skyward towards Oblivion! Next time I'll take my extensive line of anti-sickness pills to peddle in the queues.

On the Friday the Royal Marsden were up to their usual tricks. Despite being assured last week that me drugs would be pre-ordered, I arrived at 9.30 for a blood test, had to wait till 11.30 to see the consultant and the drugs were finally ready for me at 2.30pm - all for a 30 min intravenous drip.

They're trying to get some more stem cells from me this week, so I'm injecting growth hormones in my stomach - as if it needs it! Had to go to RM on Monday to see if any stem cells had mobilised. Nope. so back on Wed, and possibly Thur and possibly Fri. Scientifically its called 'hit and miss', it might work, might not, not sure when, but if you can pop over for 9am every day we can check - yeah no problem when you live 2 hrs away!!

And I've got a cold.......bah humbug...!!

BUT !!!! Newcastle have signed a couple of defenders (thats shopping that is Lou) so we might not have to play a 2-3-5 formation after all.

Monday, 30 July 2007

I'm Still Here!

Glad to see everyone's keeping themselves amused in my absence!

Been away for a few days break inbetween treatment and before Michelle starts her new job. Originally we were gonna go up to my parents for a few days but with the crap weather Michelle needed some sun. After consulting the Royal Marsden about whether I would be OK to go abroad for a short break they were fine with it. I'd go for a blood test on the Fri, if I needed a transfusion then I could have one on Fri and then could go away on Sat. So we booked 5 days in Sardinia to fly out on Sat. Fri comes and the Prof. calls with m y blood test results. "I strongly recommend that you do not go abroad, you're platelet count is v.low, as is your white cell count. You are vulnerable to spontaneous bleeding and infections". So, I'll pop in a for a transfusion then? Er, no, there not that low you need a transfusion and they wont take effect for a few days!?! His concern was whether my count had bottomed or was going to go even lower. I suggested having another test on Sat and if it was higher were we OK to fly out on Sun. He was more relaxed with this, probably based on the fact that it wouldnt happen.

Had blood test in Reading on Sat morning. Nurse said she ran the tests 3 times to try and get a higher reading but it was lower than Fridays results. Had a long chat with consultant oncologist who said she was normally bullish about chemo patients having a holiday but in my case really could not recommend it. If I started bleeding internally or picked up an infection I would need immediate hospitalisation, without which I could die! Mmmm, so its a risk and consequence issue. I'd reckoned the risk was probably low, but consequence could be quite high. I figured that the advice of 4 doctors was a little too much even for me to ignore, so we cancelled.

As a fall-back we decided to go down to Devon for a few days. Quite how long it would take an ambulance to get to Woolacombe if I needed one, I cared not. We floated (literally) down the M5 wondering whether we would ever see some sun. Well, we got 2 days of sun, 2 of rain and no spontaneous bleeding or should we have gone to Sardinia!?!

Back to RMH on Friday for the start of my next cycle. As usual they weren't ready for me and my drugs weren't ordered so I had to wait 4 hours just to get on my first drip! F****** useless!

Monday, 9 July 2007

One down...a few more to go

Well, first chemo session went according to the Royal Marsden's usual efficiencies. Arrived at 10am for appt with the consultant, eventually got to see him by 12 whence he tells me that he need to order the chemo drugs, which will take another 3 hours to get ready, then about 4 hours to give. When the drugs eventually arrived on the ward they then realised no-one had gotten me to sign a consent form, so I had to wait another hour for a doctor to arrive to go through the consent form with me. I promised I would just say 'yes' to everything. Eventually left the hospital at 7.30pm

Been feeling pretty rough all week - been raiding my supplies of anti-sickness drugs I stored from last year and OD'ing on immodium. Not sure if it is actually worse than before or you just forget how rough it was previously.

For the techies out there I'm on two new (for me) drugs, gemcitabine and oxaliplatin, which together have been used in a few studies on germ cell tumours that appear resistant to standard chemo drugs. Each cycle is 3 weeks - 2 weeks as 1 day outpatient, then one week off. Current thinking is I will have between 2 and 4 cycles depending on how I cope before starting high-dose. Not looking forward to it.

Thursday, 5 July 2007

It pays to argue!

Well after arguing for 2 weeks and escalating the issue the health insurance company have finally backed down and will now cover my pending treatment, as well as the stem cell harvest I've already had. It pays to study the small print of exclusions - they were trying to class my stem cell transplant as 'transplantation surgery' which is an exclusion on the policy. Well, taking some blood cells, chucking them in a freezer for a while, then re-injecting them at a later date is hardly a heart transplant is it! Makes you wonder how many people either accept their decisions, or are not well enough to argue the toss?

Thanks for all the donations (not) - I'll repay them back shortly, with interest of course...unless the chemo affects my short term memory..... in which case I'll forget.......................what was it I was gonna forget...?

Monday, 2 July 2007

Chemo here I come...!

Finally got the results from the histology report - which showed that the other bit of suspect tissue removed by the surgeon was also cancerous. The result from my PET scan last Thursday showed that my hip is clear but the nodule which first showed up on my pre-surgery CT scan is also an active tumour, which explains why my tumour marker is still rising.

The fact that there have been 3 known lung tumours tips the balance from surgery back to high-dose chemo - I am booked in to start 2 cycles of normal dose chemo this Friday (on a day case basis, so no overnight stay) with high dose chemo to start thereafter.

I was gonna say thats another summer missed, but looking outside......

Thursday, 28 June 2007

Ouch....that hurt

Just as I was about to consign the painkillers to the bin I think I overdid it and suffered.

Been struggling sleeping the past few days - whether its morphine withdrawal or the excitement of Tony Blair's premiership coming to an end I'm not sure. Decided to break-out of the house and take Rufus for a walk (he's a dog, in case anyone wonders whether I do care in the community) - surely the exercise would do me good?

Anyhow, 'bout 11.30pm last night I'm suddenly in agony, struggling to breathe and Michelle's debating whether to wake the neighbour and ask him to drive me to hospital or whether to call 999 - while I'm overdosing on liquid morphine. The thought of an ambulance turning up seemed too much of a drama and would increase my carbon footprint, so we called the doctor's out of hours number.

A scouse doctor called back in 10 mins. He probably thought he'd called an 0898 line by mistake when I answered with heavy breathing. A few random questions later and he seemed confident my lung hadn't imploded.

"Can you come down to the hospital?", he ventured. "Whats the alternative?", I enquired. "Well, I'll give you a call back in an hour and see if you're OK". "OK, but can you ring quietly, we'll be asleep", I asked.

By the time he rang back the morphine had taken effect and the pain had all but gone, but boy had it been bloody painful - as painful as it ever was in hospital. Looks like I should be taking it easy and stay on the tablets a bit longer.

Had another PET scan today - so I'm radio-active for the evening. If you look towards Newbury tonight you'll probably see the glow. Back for the results tomorrow.

Friday, 22 June 2007

Which is worse.....??

Two bits of bad news in one day and I'm not sure which is worse?

1) My tumour marker result is back up - it was up to 137 on Tues and I'll find out todays result on Monday. Scheduled for a PET scan next week but looks like I'm heading for high dose chemo.

2) The insurance company won't cover me for the stem cell transplant, despite the fact that I've already had the harvest - which they didn't authorise due to the Royal Marsdens ineptitude. This means that I will have to become an NHS patient....shock/horror!!! The meals on the private ward are bad enough - imagine how bad they will be on an NHS ward. And I bet they won't have wi-fi. I fully understand if no-one wants to come and visit me on the NHS will be full of ill people.

Thursday, 14 June 2007

Good far

Well feedback on the tag board suggests that some of my fellow northern pals are not too au fait with medical parlance and 'treatment by numbers' - which is surprising when they're still painting by them!

Just got my most recent tumour marker result back. It's 109 - which for those who can't be bothered or just didn't understand my previous post is relatively good news thus far! It would appear to have dropped as expected if the tumour removed was the only cancerous source.

Early days. I've been here before (twice!) - there could still be other seeds growing which are still too small to be detected.

Back to the waiting game........will Big Sam actually buy any defenders?!?!

Friday, 8 June 2007

Donations welcome!

Had an appointment at the Royal Marsden hospital on Friday to review where we are up to. I was aware that monitoring my AFP tumour marker is going to be a key indicator in determining what happens next and when. The first thing you always do when arriving at the RMH is to have a blood test. What is frustrating is the fact that they don't have the results available for when you see the consultant. This time it was Professor Horwich who confirmed the obvious - they would await the outcome of the AFP marker level from my latest blood test (should have it today - Monday - hopefully). He was unaware of the additional tumour on my right lung which showed up on my pre-surgery CT scan - he hadn't seen the scan from the Royal Brompton. They are also awaiting a pathology report on the tumour and the additional tissue removed during the op. Apparently the initial report suggested that the germ cell tumour was also exhibiting signs of having transformed into another cancer type - the tisse has been sent to the RMH for further analysis. Knowing the exact make up of the tumour may help them define a more appropriate mix of chemotherapy treatment.

My recent tumour marker results have been 20 April - 160; 4 May - 182, 18 May - 265. Surgery was on the 29th May, and todays blood test was 10 days since surgery. In theory my AFP level could well have been up to 320 before surgery. If the tumour they removed was the only cancer source then by today the AFP level should have halved to 160 'ish. I'm not holding my breath for the result on today - even though it would stop my chest from hurting.

I have a follow-up appointment booked for two weeks (22nd June) but knowing that if I have a blood test that day they won't have the results to review I suggested I get a blood test done in Reading a few days earlier, so I do have some results for the meeting. What a good idea!! Why didn't I think of that. Oh , I just did!

I'll be coming around cap in hand shortly after the insurance company advised they don't cover stem cell treatment, which means I will probably be charged for the stem cell harvest I've already had! I'd consider a sponsored run to raise money but I can only just walk!

Thursday, 7 June 2007

Good to be home

Been a painful week back home, but its good to be mobile once again. Its suprising how much more you move around being at home compared to being sat in a hospital room where your bed/loo/lounge-chair are within 10ft of each other.

Still dosing up on painkillers - 40mg morphine sulphate twice daily, 1000mg paracetamal four times a day, gabapentine three times a day and Oramorph (liquid morphine) as and when required - plus 4 types of laxatives to keep me irregular. The wound is healing nicely, in fact I can't feel it most of the time, its more the front of the ribs - probably where a bloody great clamp yanked them apart! I'm tempted to give up the painkillers for a few days to see how much it would really hurt without them. No pain, no gain.

Michelle's doing an able job with the household chores, i.e running after me, washing the cars, cutting the lawn (she hasn't quite grasped the fact that you need to overlap each run slightly so we have a rather strange effect of thin strips of tall grass separating the normal stripes). I'm supervising from a safe distance.

Tuesday, 5 June 2007

Get 'em checked!

A serious message to all you chaps out there.

If only she'd checked mine, life would have been so much different......

PS. Kylie's been relegated - type Kylie in search box top left

Monday, 4 June 2007

He's coming home!

Well after being dosed up on morphine and paracetemal all week my pain was deemed bearable enough for me to come home. I've been asked to score my pain on a 1 to 10 basis all week. I noticed its always 1-2 if I dont breathe, 2-4 if I breathe and between 5 and 8 if I move. I decided it best not to breathe.

The side effect of the morphine is that my bowels havent moved for a week, despite plenty of persuasion - all-bran, dried apricots, lactulose, Movicol, senna tablets and two enema's have failed to shift it. It's like trying to get rid of Freddy Shepherd at Newcastle!

I was told I could go home on Saturday but the lack of bowel movement and dizzyness caused by changing to different painkillers, as well as the excitement of watching the England match (not) was too much and I was ordered to stay in.

Finally, with the help of a rather large enema, the heavens opened this morning and I instantly lost 2 inches from mid-riff. That, together with a few pounds surgically removed from me last week shows that cancer is medically proven as a viable alternative to the Atkins Diet.

I'm coming home, looking fitter than when I went in!

Friday, 1 June 2007

Am I in heaven..?

I vaguely remember drifting in and out of consciousness in the Recovery room. The nurses seemed prettier in there but it's probably the effect of the morphine - I guess it works like beer-goggles?

Got lots of lines in me in varying places - 1 large chest drain, one small chest drain, 1 PVB line dispensing painkiller directly into my chest area, one patient administered morphine line (click to make you happy!), something else in my jugular vein and two other lines in the arm. Oh and I had a catheter in for my wee-wee, and it took me a while to realise where it went.....and it makes you weep when the pull it out!!

Thought I'd be there for an easy time, but no, they get me out of bed and make me start walking on the spot, start doing some heavy breathing and start coughing...the most feeble, pathetic of coughs as its too painful. Click, click, click....aargh, thats better..!

Oh, and the surgery went well. Tumour removed along with another suspicious bit that will be tested. Scar not as bad as expected - about 9 inches and no visible stitches!

Monday, 28 May 2007

Last Supper

Steak for dinner - on the NHS (well it is a private ward). I'm nil by mouth after midnight, ready for 8am start. That means I'll be the surgeons first operation after the bank holiday - doesnt he need some practice first?!?!

Wednesday, 23 May 2007

Checked he had a steady hand...!

Met the surgeon today. As ever they tend to exhibit a confident, almost arrogant, belief in themselves - something easy to loathe in anyone but a surgeon (and Stu), but its exactly the feeling you want from them!

Quick cut here, persuade the ribs to open up and your in. Whip out the tumour and surrounding tissue, have a rumage around for anything else while I'm in there and we're done!

We reviewed the results from CT scan earlier that afternoon and the tumour was there for all to see (about 3 o'clock on the image above). More concerning was the fact that there were two other tumours on my right lung. One had been there ever since my first scan two years ago - its never enlarged or showed as active on the PET scan and can be seen at approx. 11 o'clock on the scan above. The other one not shown on the above slice is approx. 5mm and appeared to be new addition to the family, although it hadn't registered as active on my recent PET scan. So that means there may be the option of having further surgery on the right lung, before chemo?

PS. the surgeon had steady hands, but a dodgy eye! Not sure which is worse?

Monday, 21 May 2007

What are you doing this afternoon, sir?

Who says the health service can't move quickly?

After prevaricating for 6 weeks over which treatment to have I receive a call from Michael Dusmet, surgeon at the Royal Brompton hospital. "I've been asked by the Royal Marsden to take the tumour out of your lung, what are you doing this afternoon?" he asked.

I liked his style but not wanting him to rush into things (and the fact that I didn't have my toothbrush on me) I settled for meeting him on Wednesday, with surgery scheduled for the following Tuesday 29th May.

This at least fitted in with my plans to visit York for the weekend and visit some old friends (yes Nigel and Jerry, you are old!). Might be the last beers I have for a while!

Saturday, 19 May 2007

What's the plan?

In advance of High Dose Chemotherpay (HDC) I was prepared for a stem cell harvest which involved my giving myself nightly injections of growth factor for four days and then being connected to a centrifuge harvesting machine. Two sessions allowed them collect enough stem cells for one HDC cycle, but not quite enough for two, but they can try and collect more after my first course of normal chemo.

After much confusion I was finally scheduled to commence standard chemo cycle on 24th May, though the consultant, after some prompting did advise that they would discuss my case in more detail, particularly in relation to the surgery option. Having HDC first may mean there is nothing for the surgeon left to find; surgery first may simply delay the inevitable and increase chance of cancer spreading elsewhere.

Frustration!!! The standard treatment regime doesn't seem to extend to a second re-lapse, thus there is no standard approach - more of 'seat of your pants' type of approach, not helped by seeimg three different different consultants at the Royal Marsden (RMH) each of whom appeared to have only just picked up my file, did little to instill confidence in the decision making process!

A phone call at 8.30pm confirmed that after discussing the options the RMH team had decided that surgery first was the best plan of attack. It was decided that in the absence of being able to confirm whether my hip area is cancerous (a follow-up PET scan was inconcluisve) removing the known tumour surgically would give me a chance of not having to go through HDC - they would assess my AFP tumour marker after surgery and if it continued to drop as expected they could review the HDC option. If it didn't then it's HDC as originally planned, but with the risk of chemo not fully killing off the lung tumour removed.

Well at least there is now a plan!!!

Monday, 2 April 2007

Here we go again...

Once again a routine blood test in February showed elevated AFP levels, which continued to increase with further tests. A PET/CT scan confirmed a 6mm tumour in my left upper lung with a further suspicion of a tumour in my left hip-bone.

With the options for further treatment limited I was referred from my oncologist to the specialist team at the Royal Marsden Hospital in Sutton. Options included High Dose Chemotherpary (HDC) with stem cell rescue and probably surgery, with the RMH to assess my suitability. The hip area would require separate radiotherapy at some point, likely after the chemo.

The HDC option was confirmed at the Royal Marsden, who advised that they would if possible wish to repeat the HDC cycle twice. The HDC itself would likely be pre-empted by two cycles of normal chemo, in order assess the chemo-response of the tumour. The option of surgery either before or after HDC was also to be reviewed.

HDC involves intense levels of chemo given over four days. The effect is that it wipes out your blood cells and bone marrow, so by re-injecting you with your own stem cells it is hoped that it will help your body recover quicker. HDC leaves you at risk from infections as your immune system is reduced. With the stem cell rescue you could be in hospital for 4-6 weeks depending on how your body responds.

Look like my summer is going to be buggered again!