Monday 30th March 2009

Hi All,

I've just had the follow-up meeting with my oncologist, and have also shared the address of this blog with her (hi Jo!), and I think the information I got confirmed my usual feeling of "Good news with a healthy dose of uncertainty".

I had a few concerns and questions that I wanted answering and they were all covered. In particular, the recommendation is for no further treatment at this stage. This decision is based on a lack of evidence that post-operative chemo (or radiotherapy) actually has any real benefit in these kind of situations.

I'm ok with this. There is no evidence at the moment that there is still any cancer in me, so it would therefore be impossible to measure whether any chemo had been effective, and based on the fact that there is little evidence that the pre-op chemo was particularly effective it would just seem like putting myself up for a possible bad experience for absolutely no reason.

In the meantime, my oncologist does want to send my tumour sample to a pathologist who specialises in endocrine tumours just for a second opinion on the histology, and this might throw up something which might mean a different approach, but otherwise, this means that my next follow-up will be with the surgeon in three months time.

Going forward, I will probably have the option of having regular scans if I want, but the advice is actually not to have them as they can be counter-productive. The stress caused by waiting for the results of a scan may outweigh the benefits. Apparently there is little advantage to catching a re-emergence early, over catching it later. Apparently the body is very good at indicating a re-occurence - if it comes back, you will just "know" anyway.

As you may have noticed from this blog, I'm pretty good at not worrying or stressing out about stuff unless there is something actual to worry about, so apart from a few wobbles in advance of the surgery, I've been pretty stoical about all the meetings and results that I've waited for during this whole process, so I'm not sure the argument above applies to me.

The question is really - if it is going to come back, do I want to know as soon as possible, or do I want to maximise the period of blissful ignorance? Interesting philosophical/psychological question! I need to put a bit more thought into this one!

One thing is for certain, I'm not going to spend the rest of my life worrying about the rest of my life!

No point! As soon as my diet is sorted, I fully intend to get on with things 100% - back to work, back to travelling, back to gigging and maybe a few other projects on the side. Which leads me to my latest "hair-brained" scheme ...

Many of you know that I like my cars and am long overdue to replace mine. The general idea is to get a two-seater for fun, and replace my Audi with a van for the band gear at some point (rather than the compromise of a big cruiser like my S8 which serves the purpose of being fun, but also having a big boot).

My latest idea is rather than go out and buy a sporty number, I would like to build one. This would be cheaper than a production car, but also more satisfying as a project.

Having seen a few of these at Le Mans in previous years, my heart is currently set on an Ultima GTR. The World's fastest production car from 0 - 100 - 0. Faster than a Ferrari Enzo or McLaren F1, yet fairly practical (will go over speed bumps etc) and a 20th of the price. I reckon you don't get much more fun than that!

Of course this is a bit of a pipe dream at the moment, and probably won't come to fruition, but I'm struggling to see a reason why not to do it - what better excuse do I have after all? If I'm not going to live out a few dreams now, when am I? :)

Check out the pic below, and the website (click here) and see what I mean ...

Ha ha! :)

Cheers All!

Colin x

Sunday 29th March 2009

Sorry, the mammoth post on Friday took it out of me and I forgot to post yesterday! (I had visitors until the wee hours, so I was distracted - my excuse and I'm sticking to it!)

Had a bit of a jam session in the lounge with friends Matt (guitar) and Paul (drums) yesterday, and as I can't see any gangs of neighbours gathering with flaming torches and pitchforks, it seems we didn't upset them too much. We're lucky here in that being at the end of a cul-de-sac, we don't have neighbours to the right or behind at all. To the left are good mates Ross & Jo, and opposite is quite a way. All the houses are well double glazed, so we were probably ok. Plus it was raining, so no open windows. We might make it a regular thing now, as I need to justify my investment in the new bass after all! :)

I had a couple of cocktails (grasshopper! ;) and a curry last night which was all good and I don't feel any ill effects this morning which is great. We spent the night last night trying to outdo Spotify with the most obscure songs we could think of. I think the result was about 50:50 - quite a few not on there, but some great discoveries too!

A parcel from the dietitian arrived yesterday, with 4 different kinds of different supplement drinks to try as an alternative to the ones I have at the moment which continue to make me feel sick. I've tried two of them so far and they seem to taste nicer and have not yet made me feel bad, so that is potential good news for the future.

Three of the 4 kinds are also in powder form (mix with milk) which means that the resulting drink is less thick, and more easy to consume. Added benefit of this might be when it comes to me travelling when I eventually start again - it will be easier to transport powder sachets than ready-mixed drinks, especially if I need to take any on a plane for example. However, that would still mean the challenge of getting the cabin crew to part with a large glass of milk when required!

On that front, British Midland announced on Friday that it will no longer be flying to London from Leeds/Bradford airport which might be a pain for me as I was a regular traveller on that service.

The alternative is Manchester which is not much further, but the journey to the airport is much more susceptible to delays which increases the stress level. Given the current financial circumstances, I guess I'll be travelling on the train or by car more in the future anyway, so this may not be too much of an issue. Still, travelling is still quite a way off I think (I need to get my diet fully under control before I can stray too far from the comfort of home), so I won't worry about it now.

Excellent start to the Formula 1 season this morning, and now I'm going to relax with the Boat Race, so toodle pip for now!

Cheers,

Colin.

Friday 27th March 2009

Ok, stand by for a picturiffic post today!

First things first though - I now have an appointment with my oncologist on Monday at 1pm in Huddersfield. Good news.

Nothing much else on that front - I've been ok today. I've been experimenting with my anti-emetics and unfortunately for the NHS, it seems that the one which works best is the expensive one (just call me high maintenance!) I only have a few of those, but I'll get some more from my GP soon.

So, onto the exciting stuff ...

9am the doorbell rang ...

And there she is. Now this may not be a big thing for some of you, so let me explain. Girls, think of shoes. Now think of Manolo Blahniks, with maybe a buckle or lace by Jimmy Choo on top and you are somewhere close. In fact, I may have to sleep with it tonight ... ok, maybe not. I am a happy man, although I do appear to have driven Vanda out of the house!

So, next subject ... Here's a quick update of how the garden project is coming along. Still a building site, but all of the basic landscaping is done now, just waiting for the frost-risk to recede so we can plant/turf. Here's a couple of "work in progress" pics ...

This is a view from the bottom corner of the house looking up across the new bit of garden. Before we expanded, you couldn't see the old wall at all as it was obscured by a fence and a load of weeds. When it's finished, the mud bit by the wall (and another bit to the right that you can't see will be turfed, and the mulch area in the foreground will have fruit trees and some other shrubs. The natural stream in the middle (run-off from the slope) will have a feature on the plinth in the middle.

This is the view from the top corner of the existing garden, looking down the slope. The trees you can just see beyond the fence at the bottom are also on my plot (they are the ones I posted the picture of during the snow), but we're keeping that section separate as it would have made the garden just too big if we'd included it. It will stay as it is for now.

The bricked up tunnel you can see used to go under the main road and you could get to the Halifax rugby stadium which is the other side of the road. My friend Nova suggested painting a mural of a train coming out of the tunnel on the bricks and to put a big light on the front shining out. I might just do that for a laugh! (Anyone a budding artist out there? Sue maybe you could paint me one next time you're in the country?)

Hopefully all the work will be mostly complete in a month or so, ready for the rest of Summer (if there is any more to come after the brief flash of blue sky last week!). It's certainly not here at the moment, although we've had the old "Four Seasons in One Day" today, with sunshine, rain and hail all within one hour!

Finally, and deliberately left until the end, the updated scar pics, so Adrian, don't scroll past here! :)

For those who don't want to look, I'll say good night at this point! Looking forward to a weekend of bass-playing and Formula 1 - bliss!

Cheers,

Colin.




First the baby neck wound. Healing very nicely as you can see ...

And here's the big one. Again healing nicely, but still more pronounced than the other one as the staples came out over a week later.


Bullet hole at the back is the chest drain (only a small hole actually - most of the marks are from the sutcher. The three small scars are where the feeding tube went in and where it was stitched to me to stop it coming out. It all still looks very red, but trust me there is very little pain associated with it now - I haven't had a painkiller for about four days.

That's it for now. Maybe another installment in about a month if you want one.

Thursday 26th March 2009 - Part 2 - re: Your Comments

Hi again,

Another quick post to say thanks for your continued comments on the blog.

I'm going to start making a conscious effort to reply to them all individually with further comments, so if you have left a comment, please check back occasionally to the day you left it and I'll try and post replies where appropriate. I've replied to most of the comments left in the last 7 days, and as I say I will try to continue doing so going forward, because I really do appreciate it.

Thanks,

Colin.

Thursday 26th March 2009

Interesting news today ...

Apparently the surgeon has discussed my case with my oncologist, and she has taken a look at the histology report, and her view is that I don't need any further treatment. It seems that I will not be being referred to any other specialist, and I won't need the close monitoring that the surgeon was talking about. Her view is that I will just stay under the surgeons care and will have a standard, post-surgical follow-up cycle.

Whilst this sounds like good news, I'm also quite surprised given the information I have had so far.

I will have a meeting with the oncologist to discuss all this (no date as yet), as I now have a hundred questions, but if this is her expert view, I guess that means that she is not worried about any immediate recurrence.

Hopefully this is good news. However, I can't help feeling a little disappointed that it seems I am not going to be a "rare and important special case" after all :(

As I type this, I'm like an excited child on the eve of his birthday. I am anticipating the arrival of my new bass via courier tomorrow and I am looking forward to spending the day testing it out. Conversely, Vanda is not looking forward to me spending the day testing it out and is contemplating an impromptu shopping session.

As an aside, for anyone reading this who is a music fan, I made the discovery of the century today. After seeing an article on the TV, I downloaded a free application called Spotify (www.spotify.com).

This is like a huge, internet-based iPod, with 8 million tracks pre-loaded on it. Once you have downloaded the small app, you can search by artist, song, album etc, and play the results immediately without waiting for download. It's completely free (although there are occasional ads, which you can avoid by paying for the premium service) and totally legal.

The reason they can do this is that you can't download the songs, only play them on your computer, so you have to be by a PC or laptop with an active internet connection (i.e. you can't copy them to your iPod etc). I have my PC in my office, and a laptop connected to the system in the lounge and it works fine from both. You create playlists etc just like on your iPod, and they are saved in the internet cloud, meaning that if I create a playlist on the laptop in the lounge, it immediately appears on my office PC too.

There are some artists who aren't on the system (Frank Zappa one notable exception), but almost everything else I tried was there in abundance. Very, very easy to use and entirely cool! Allows you to listen to that new song or album before buying it, or to find songs or albums you were not even aware of.

I am a huge fan of "different" cover versions of well-known songs - for example, Dread Zeppelin (reggae versions of Led Zeppelin songs) and I've been able to search for a song and find loads of different versions that I wasn't aware of. Excellent stuff!

By the way, no charge for today's free tip. Tomorrow, you pay ...

Cheers,

Colin

Wednesday 25th March 2009

Quite an eventful day so far today!

My nurse specialist has called me back, but unfortunately my phone was on silent so I missed her call. She has some news for me apparently, and has promised to call me first thing in the morning, so I should definitely get an update on the oncologist front tomorrow.

This afternoon I have been to see my GP, as the Metroclopramide anti-nausea tablets haven't really been working too well. She has given me some new ones to try. First some Cyclizine, to have alongside the others (the Metroclopramide also provide an additional benefit of speeding up the emptying of the stomach, so they want to keep me on those even if they don't help the nausea too much), and secondly some more Ondansetron - the expensive ones (about £8 a pill) that I had a few of during my chemo. Again, I've only got a few of those to use if the others don't work, but my GP did promise to give me more if I needed them!

I also found out today that as from 1st April this year, cancer patients are exempt from prescription charges, which is handy! This means that going forward, all my drugs will be free. You gotta love our healthcare system, despite it's many flaws - I'm really glad I'm not going through this in the States!

Big news of the day (for me, anyway), is that I drove my car for the first time in 6 weeks today. I think that is the longest period away from driving since I first started at 17. Luckily I could remember how to do it! Everything was fine - no discomfort at all - so I've actually been out three times today. I even nipped to McDonalds to try a cheeseburger - unfortunately it made me feel sick :( However, that's real progress today, and it means that I feel more confident to get out and about a bit more which is definitely a good step forward. I'm not ready for a long journey yet, but the ability to get to the docs, the supermarket, the bank etc, at my leisure is a bonus!

What else today? Well, when we had the snow, it bent part of the house guttering out of shape - right above the conservatory, so impossible to reach with a ladder. It has meant that the gutter has been overflowing whenever it rains and pouring straight onto the conservatory roof, making an irritating racket. Today I felt so good, I was sitting on the windowsill, leaning out of the house and fixing the guttering. Not bad six weeks after major surgery! Good news is that its fixed now (hopefully), so another feeling of accomplishement today.

I've also found over the last couple of nights that I am able to lie on my left side for short periods. As I've mentioned before, I tend to sleep on my right side, but occasionally like to roll over in the night. Despite the fact that I am lying directly on the full extent of the shark bite, it has been fine. After a while I become conscious of it and tend to move back to the other side, but it is an indicator of how well things are healing.

So, all-in-all, a very good day today, despite a short period of sickness. Let's hope for some good news tomorrow morning ...

Cheers,

Colin.

Tuesday 24th March 2009

Annoyingly, no info re the oncologist yet. I called my Clinical Nurse Specialist, my main point of contact, but got her voicemail. Hopefully she will call me back tomorrow.

I'm looking forward to getting some more info, as I feel a bit in limbo at the moment, not knowing if I have to plan my life around further treatment or not.

Fingers crossed for some news tomorrow ... but until then, sleep tight!

Colin

Monday 23rd March 2009

Another ok day today. Woke up tired and have felt a bit washed out all day, but that's still quite common at the moment.

Main problem is I'm struggling to remember to do stuff. I was never great at remembering things without a prompt, but at the moment it's going to extremes. Unfortunately I remember everything at about 7pm, when it's too late (usually phone calls I need to make etc). I know I should just write things down, but now that I'm not working every day, I'm out of my "list-making" routine. Never mind, I'm sure I'll get back to normal eventually!

No news from the oncologist today. I'm hoping the relevant conversations have taken place today, but they've just not called me with the outcome. If I haven't heard anything by lunchtime tomorrow, I'll chase them up.

I'm off to have an early night tonight to try and wake up a bit more refreshed tomorrow!

Cheers

Colin.

Sunday 22nd March 2009

Outcome of my drinking session last night was that I had two small glasses and decided that was enough, so I am officially confirmed as a cheap date! Definitely felt the effects though, so I know to be careful going forward. I'm not sure how much that is to do with the new configuration of my insides, or just the fact that I haven't had a drink for nearly two months - probably a bit of both.

Nothing much else to report today - it's been an ok day, nothing special either way, but looking forward to hearing something regarding the oncologist tomorrow.

See you then,

Colin

Saturday 21st March 2009

So, us Spurs fans all have nose bleeds at the moments - scaling the dizzy heights of 9th place in the league and the first time this season in the top half - what ho! Now watch us throw it away by losing all the easy games, as usual!!

Celebrating with the fist alcohol to pass my lips since before the surgery. Nothing serious - just a small glass of Amarula (fruit cream liqueur, similar to Bailey's), but I can feel it already - Wahay!

I will report back tomorrow on the outcome ... :)

Other bit of good news is that the small scab on my shark bite which was sticking out and kept getting caught on things and hurting, finally came off this morning which is great news - small step with big implications!

That's all folks - back to the booze. Remember kids, drink responsibly - try and stick to one beer ...


Cheers,

Colin

Friday 20th March 2009

Glorious sunny day today. I spent a long time roasting in the conservatory, and even had to open the windows to cool down. Makes such a difference!

Had a good day on the eating front today which also helps to boost the mood, and finally, to put the icing on the cake, I've just bought another new bass guitar (that's about seven or eight now I think!).

Not just any bass though - Fred bought this gorgeous white Rickenbacker back in about 1984 if I remember, and I have coveted it ever since. I finally found a decent excuse to make an offer, and luckily Fred was in the mood to sell (thanks Fred!) There are not many things I've waited 25 years for - let's just hope it survives the courier trip up north now!

On the cancer front, the more we find out via various contacts, the more rare and interesting it seems my case is. The downside is that there is no huge "body of knowledge" in this area, but the upside is that I am likely to attract interest in the oncology community, which will hopefully lead to plenty of expertise on my case - I'm genuinely intrigued to find out more now - not just for my health, but for my natural curiosity too! Maybe someone will write a nice book about me (or at least an oncology journal article! :)

Anyway, will stop there and make sure I remember to press "Publish" this time!

See you tomorrow!

Col x

Thursday 19th March 2009

Another pretty good day today, apart from the phone call from Acorn Stairlifts, trying to sell me one. I used to get sales people trying to sell me double glazing or kitchens, but Stairlifts?? That's a worrying development! I'm only 45 for gawd's sake!!

The latest on the oncologist side is that my "Upper GI" oncologist is back from her hols on Monday, but the surgeon wants to talk to her before making me an appointment, as they need to discuss whether she is the best person to see me going forward, or whether she needs to pass me over to someone more specialised in the particular tumour type. I guess I'll find out Monday or Tuesday and will get an appointment sometime after then. As usual I'm in two minds as to whether I want this process to happen quickly, or to maximise the time between now and any further treatment. It's nice to have a break!

Ooops - its Friday morning. I wrote this last night but I appear to have forgotten to click the "publish" button. Sorry!

C

Wednesday 18th March 2009

Excellent day today!

It's always nice to wake up to a sunny day - it's been lovely all day today. A bit cold outside, but gorgeous in the conservatory! Made even better by the fact that it is raining in Florida today! I'm not gloating, as it has apparently been a drought in Florida recently, so they are actually thankful for a bit of rain - but it does make a change for the weather to be nicer in Halifax than Florida! Nice to have a long chat with my West Palm Beach buddies - good luck with the vegetables!

Anyway, why such a good day today? Nice weather, no sickness, and a milestone in my recovery - I went round the supermarket with Vanda today! Doesn't sound like a big deal, but it is the furthest I have walked since my laps of the hospital ward, and maybe actually further than that. It's also the first time out of the house for anything but a medical appointment, so a real first (I cannot believe I am raving about going to the supermarket - whatever next? A day out clothes shopping??)

Had a lovely, sticky, real cream Belgian chocolate eclair as a reward, and actually felt virtuous eating it - ha ha, long may that feeling last!

Also got my new bank card today, so I'm back in action on the spending front (not that I need it at the moment). It seems that the bank managed to stop most of the fraudulent transactions (so matey never got his car insurance - I hope he has a crash now and writes off his car!) The only transaction which slipped through was £8 for the London Congestion Charge, so I have to claim that back, but it could have been worse I suppose.

Still haven't taken any new photos yet, but I promise I will get around to it at some point - I've got to do something to liven this blog up - there's only so much of "Good day, bad day, average day" you can stand without giving up on me! :) Thanks for hanging in there - I promise I'll try and live a more exciting life soon! (I went to the supermarket today - did I tell you?)

Anyway, hoping for a few more days like today,

Cheers,

C

Tuesday 17th March 2009

A similar day to yesterday. The anti-emetics are preventing the full-on nausea, but I still feel a bit "off" most of the day. It's not that I particularly feel ill, it's just that I have no desire to really do anything. I feel like Kevin the teenager - even the smallest thing makes me feel like harrumphing and stamping my feet because it's all too much trouble. I guess it's the general lack of energy that I have at the moment.

To compound it all, today the council delivered our new waste management system. Not just a wheelie bin, oh no, nothing as simple as that! A wheelie bin, a bottle and can box, a small food waste container, a large food waste container, a plastic bottles sack and a list of undecipherable instructions:

Food waste goes into a biodegradable bag in the small bin in the house. When this is full, the bag goes in the larger food waste bin outside (I think that's what its for anyway - the instructions don't mention two separate bins here). This gets collected every week (weeks A and B).

Bottles and cans go in the plastic box. This gets collected fortnightly on Week A only.

Plastic bottles (without the tops, mind) go in the white sack and go out Weeks A and B

Newspapers go in the green sack (yet to be delivered) and go out Week B only (along with textiles in a separate carrier bag)

Everything else gets itemised on an A4 sheet of paper and goes in the wheelie bin which goes out on Week A (ok, I lied about the A4 sheet of paper)

The right boxes/containers have to be at the kerbside by 7am on the correct week else they will not be collected.

Huh???

I know there is a good sentiment behind this, but this is just ridiculous. I know what is going to happen. Give it two weeks and we'll be putting everything in black sacks and making our own trip down to the dump each week!! Madness! (Just call me Victor Meldrew)

Anyway, I hope you all noticed the comment on last night's post? It's not often you get an eye-witness account of a Space Shuttle launch on a cancer blog!! Nice one Barb & Al - I hope it's not too sunny for you over there at the moment - I think I saw a glimpse of blue sky in Halifax today, but I might have been mistaken! :)

Sweet Dreams,

Colin

Monday 16th March 2009

Average day today. I haven't really felt bad all day, but I haven't really felt good either!

No news as yet on a meeting with the oncologist, but I do know her next clinic is next Monday/Tuesday, so it won't be before then.

Short one today - I'll try harder tomorrow! :)

Cheers

C

Sunday 15th March 2009

Pretty good day today. Felt a little sick after breakfast and went back to bed, but got up after lunch and have been fine the rest of the day. Had a couple of nice visits, and Spurs beat Aston Villa against the odds, so all-in-all a favourable day! :)

I'm still getting the abdominal pains associated with diarrhoea, but not the follow on diarrhoea itself which is good, and I now have some anti-nausea tablets (from my friendly doctor) to tide me over until I get a full prescription, hopefully tomorrow. So as these start to take effect, I hope the nausea will settle down a bit and food will become a more attractive proposition!

I've just read another article on the net which we found whilst looking for the definition of a term - sounds very similar to my case - same symptoms, similar histology - for a 62-year old male in the year 2000 (much more recent than anything else I've seen). Post-operative treatment was radiotherapy rather than chemotherapy interestingly enough. This guy was still going strong 80 months after treatment which is better news, although I think he was Indian, and again the information may not be relevant to me, especially as the physiology of different races can be very different. As I say, I'm not basing any judgement or prediction based on any of these articles, but the one thing I take from this is that radiotherapy might be a possible factor. I'm not at all knowledgeable about this kind of treatment so I might just take a look at what is involved so that if this ends up being an option I can be a little prepared.

Otherwise, scars are definitely healing well, and it may be time for some more photos! :) I'll see how long it takes me to get around to remembering!

Anyway ... bedtime!

Colin

Saturday 14th March 2009

Much better day today - no adverse affects of any kind at all!

However, started the day with a phone call from the fraud department at my bank to tell me my debit card has been compromised. Some git paid for his car insurance (amongst other things) on my card yesterday. I'll get the money back, but in the meantime my Comic Relief donation was stopped and now I have to wait 7 days for a new card, followed by the hassle of changing the card details on all my purchasing websites (Amazon etc). Hassle I could do without!

What I can't understand is how stupid some people are. Ok so he's got my card details, but all that will happen is the bank goes to the car insurance company in question, tells them of the fraudulent transaction. They stop the insurance and send the police around to the insured address to nick the perpetrator. It's not rocket science! I just wish they'd bring back the stocks for minor but irritating crimes like this - chucking a load of rotten veg at some eejit who made your life difficult would certainly make one feel better, without doing anyone any long-term harm. I bet they would think twice before doing it again! However, bound to be some human rights law that says a criminal is not allowed to be humiliated or something like that! Booo!

Anyway, rant over!

See you tomorrow for what I hope will be another good day (but not tempting fate of course :)

Cheers,

Colin

Friday 13th March 2009

Topsy-turveyness continues ...

Rubbish day today. I've been feeling nauseous nearly all day and have spent most of the day in bed (I'm writing this in bed on the PDA).

The limited good news today is that the dietician has told me I can have some anti-emetics to combat the nausea which should help get the eating process under control a bit better. Pain is that it is Friday and I can't get the prescription until Monday at the earliest, but hopefully the weekend will be better than today.

I'm going to write today off as another blip, and enjoy Comic Relief from my bed!

Missing a gig with the band tomorrow, which is a shame, but I'm just not up to it yet, so have fun without me! And happy birthday to H who is also missing the gig, but for a shamefully lax reason - going out celebrating your birthday is no excuse for dereliction of duty! :) No seriously, have fun and enjoy your birthday!

Cheers

Colin

Thursday 12th March 2009

We've been doing a little research today, but I'm not sure its getting me anywhere constructive at the moment.

The key factor is that this appears to be very rare (one quote is 0.02% of all Oesophageal cancers - that's one in 5000), which means that there is not a lot of case material to go on.

From what I've found, the prognosis is not good (only one survivor out of 7 cases), but most of the info seems to be quite old (80's or 90's), so things will have developed since then. Also, most cases are for older people, so again the results are likely to be skewed. I'm not sure this is particularly useful delving into these type of figures - potentially misleading and obviously depressing.

We have quite a few questions which won't get answered until we see the oncologist(s), so we might even be going off on the wrong track entirely wit this research - I'm not going to worry about this data until I am a little better informed.

In the meantime, a better day on the eating front today, so I'm focusing my efforts on that until the next consultant meeting!

Cheers,

Colin.

Wednesday 11th March 2009

Hi All,

Unfortunately, the saga continues ...

I'll go into the detail as I have it so far in a bit, but the basic news from today's meeting with the surgeon is a mixed bag.

The histology itself is not good news, but threw up a big surprise which paints a better picture. The upshot is that they expect the cancer to return, but as and when it does, they have a lot more options open to them than usual, and a full cure is still not out of the question.

The surprise is that the tumour was not of the usual, expected kind and is actually extremely rare in the oesophagus (trust me to be special!). 95% of tumours here are what they call "adenocarcinoma", the other 5% are usually of another type (can't remember the name). Very occasionally they get an oddity, and that is the case here. My tumour is of the type "neuroendocrine", which is more usually associated with the pancreas (I'll need to do some research now as this is all new to me).

The histology shows that 7 out of the 24 lymph nodes extracted had tumour deposits - six of them close to the tumour, but one of them right at the margin of the sample removed near the main gastric artery (they think this lymph node was probably the rogue nodule). This is quite a high number, and also with one so near the edge being affected, there is the posibility that the next one in line which was not removed could also be affected.

There is also evidence at the "margins" of the tumour which is never good news, although there is nothing to suggest that they didn't manage to remove everything.

Given the above histology, had the tumour been the common type, it is likely that they would be telling me to expect the cancer to recur and kill me within two years. However, the good news is that as this is a neuroendocrine tumour, it means that it is likely to be much more slow growing than a normal tumour, so if there is any disease still remaining, or it does come back, the prognosis is better - these tumours can sometimes take many years, if not decades to grow (although nothing is certain of course).

The final aspect of the histology was regarding the chemotherapy - unfortunately there is little evidence that the cycles I had were really effective (this is quite common though).

So, what does all this mean? Short answer is a load more uncertainty.

Next step is to refer back to the Oncologist, and to probably bring in the pancreatic Oncologist, based in Leeds, for further help as he is more familiar with this type of cancer.

Although it was difficult for the surgeon to speculate in any detail, he suggested that this might mean further chemotherapy, but with different drugs. I'm not sure if this would be a short-term thing (after some recovery time from the surgery of course), or only if the cancer comes back - I have to find that out. What it is likely to mean though is that they will be keeping a close eye on me going forward, with further CT scans and ongoing tests to monitor the situation.

All in all, not quite what I expected, but then I have never really known what to expect throughout this process, and as usual it seems to be "cautious good news, with a healthy dose of uncertainty to look forward to" :)

All sounds serious, but as yet no death sentence - still plenty of hope going forward.

All of this is the interpretation of the surgeon however, and I will no doubt get more detail in a week or so from the oncologist.

So, more stiff upper lip and focus on the positive and just get on with it really. Can't change anything, and there is still everything to play for (like Spurs' fight against relegation really!) so, "Onwards and Upwards" as they say!

Cheers,

Colin.

Tuesday 10th March 2009

Nothing really to report today - all much the same, so I'll keep this one short in anticipation of more info after the meeting with the surgeon tomorrow.

Cheers,

Colin.

Monday 9th March 2009

No stickiness so far today, but I have just had a couple of hours kip to sleep off a bit of a sickie feeling. I'm not sure this was necessarily to do with over-eating, but I also had a lot of abdominal pain at the same time, which will manifest in a bout of diarrhea no doubt later on (although nothing has materialised yet).

I have these supplement drinks which I am supposed to have each day - the recommendation is two a day, but I'm struggling to manage more than one. They come in two forms - a milkshake and a thick juice - both are high in calories, protein, carbs, vitamins and minerals. They taste ok to me, but they are the key factor in making me feel sick. I need to make each one last a long time, but this is really difficult. They seem to go down really easily, then suddenly I feel sick. I'm a bit worried that it has become psychological - I'm scared of them because I think they are going to make me sick, and lo and behold, they do. I'm persevering with one a day at the moment, and taking a Berocca tablet (multi-vitamin and minterals) as well which doesn't cause me to feel sick. However, the supplements have things in them which the Berocca doesn't (Vitamin A, D and K, Iron etc), so I would like to be able to manage two. I will discuss it with the dietitian when I speak to her in a couple of days.

So overall, I'm doing ok, but I'm spending most of my waking hours feeling a combination of hungry and sick! Not ideal, but again, I've felt worse in my life, just maybe not for quite as long a duration. It will get better. It WILL get better!

Cheers,

Colin

Sunday 8th March 2009

I really don't know how to control this at the moment and it's getting frustrating again. Yesterday was all about getting sick by eating too much/too quickly or something like that (although I'm not conscious of it). Today has been all about food sticking and not going down properly.

It's not any particular kind of food - this morning it was very runny porridge, this evening it was the last portion of shepherd's pie, both of which I've quite happily eaten several times over the last few days without any problem.

The frustration is partly that I end up throwing up some of the food that I've eaten, and I just can't afford to be doing that with my limited intake, but more the fact that the sensation is exactly the same as I was having before the surgery, which makes me feel like there was no point going through it. I am focusing on the fact that I was forewarned that this might happen, and that it is definitely not a sign that the cancer has returned or anything like that, but it is just so irritating that it feels exactly the same.

It has happened two or three times over the last couple of weeks, but never twice in the same day. If it continues, it may mean that I have to have the join "stretched" which I'm not sure would be a pleasant experience but again I've been warned may be necessary at some point as the scar tissue gets in the way.

I have an appointment with the surgeon on Wednesday afternoon which is quite an important one - the results of the histology of the tumour - basically they will tell me if I need any post-operative treatment (more chemo or radiotherapy), and anything they found out from the tumour which might indicate the likelihood of the cancer coming back. I will also ask about this food sticking problem to see how often it needs to be happening before they decide to stretch the join.

Looking forward to a couple of better days before then I hope!

Good to see Nige and Nicci over the weekend by the way!

Anyway, more updates tomorrow

Cheers,

C

Saturday 7th March 2009

Sorry, completely forgot to post yesterday - nothing to worry about!

Managed to get out of the house to visit the doctor yesterday for a checkup and repeat prescriptions etc. I was absolutely knackered yesterday morning, so arrived at the docs very breathless - a good thing because it is good for her to see me in my worst state.

She was very encouraging, but reminded me that the healing process takes energy, so breathless days will be the norm for a while. I'm a bit better today, although I made myself feel sick again this morning (grrr!).

Doc has signed me off work for three months, although I truly believe I'll be in good shape long before then. However, it is good not to have to worry about forever getting re-issued sick notes, and I can always go back before the three months is up if I want to. I'm definitely not going to rush back, but I do want to start doing some "brain work" fairly soon - research etc, and I expect to go back to work in the intellectual sense quite a long time before I go back to work in the physical sense and start travelling again. I've got plenty of things to get on with involving reading, researching and writing papers/reports etc which I can do without needing to leave the house.

Not much else to report - thanks Sue & Stuart for the flowers by the way - so that's all for today.

Things are progressing slowly but surely!

Cheers,

Col.

Thursday 5th March 2009

Not a lot to report today. I've not done so well on the eating as yesterday and have made myself feel sick twice.

The problem is that although I am eating (or drinking) a small portion, unless I spread it out over an hour or so (in which case hot food goes cold), then I don't know when I've had enough until it is too late, as the "full" feeling only registers about 15 minutes after eating.

At the moment I just don't have the patience to eke a meal out for so long, and nor do I yet know how much I can and cannot eat, so I keep catching myself out.

Practice will make perfect, but it's a real pain at the moment!

Good news is that my energy levels over the last couple of days have continued to be reasonably good compared with earlier in the week, which makes dealing with the eating challenges that little bit easier.

On the pain front things are pretty good too - I'm still taking occasional paracetamol, particularly when I wake up - but overall I am amazed that given the size of the scars and the extent of the internal slicing and dicing, I am only taking basic, everyday painkillers. Not to say that there is no pain - coughing, and particularly sneezing are agony - but as these are so intermittent, there's no point in taking serious medication to try and combat that, particularly as nothing they gave me in hospital really helped in those "peak" moments anyway. Overall, the pain levels are reducing and I am able to sleep on my side for quite a long time now before I notice any real discomfort.

Better go, time for more food ...

Cheers

C

Wednesday 4th March 2009

Hi All,

I think I finally have the diarrhea under control, and I already feel a little more energetic today - not to say that I'm running around the place, but there is definitely less audible groaning, and "huffing" whenever I move!

Eating is still challenging. If I eat too much or too fast I feel sick for a couple of hours, so the task at hand is to eat enough over the day to provide the calories and nutrients I need without rushing it and tipping the scales the wrong way.

I think today I have done well on the "not feeling sick" part of the task, but probably at the expense of not getting enough inside me. It will take a while to get the balance right, and in the meantime I am losing some weight (although I'm not sure how much the diarrhea will have contributed to that), however, having always had a "bit of a belly" recently, I've got quite a bit in hand - I'm about 89kg at the moment, and according to assorted sources it would seem that my ideal is somewhere between 78 and 84kg, so I'm ok for the moment.

I have some protein/nutrient supplement drinks from the dietitian which help, and she said that if the weight loss gets too extreme, there are other, more calorie-rich supplements I can switch to if necessary, so I don't think there is much to worry about for now. I won't have to join weight watchers any time soon though, that's for sure!

It's snowing outside at the moment - not settling yet, and I don't think the forecast is for much more than a dusting tonight, but I am definitely looking forward to April and May, which has been our Summer for the last few years (June, July and August having been uniformly miserable in comparison) - Hopefully the new garden will be finished, and I'll be able to truly recuperate in some nicer weather (always the optimist!)

See you tomorrow,

C

Tuesday 3rd March 2009

I'm still feeling very drained, but I've been mentally much more positive today.

I ventured outside the house this afternoon for only the second time since I came home (other time was just into the garden to speak to the guy doing the work on the garden extension) - I had an appointment with the nurse at the GP surgery to check my bullet holes. She said both the chest drain hole and the feeding tube hole had healed well, and took off the last dressing that I had, so I am now not only tube free, but dressing free as well!

She did say that she thought I looked "washed out" which was a confirmation of the way I feel. However, since getting up at 11am (about my usual time at the moment) I have not needed to go back to bed at all today (aside from a 30 minute snooze on the sofa!) which is an improvement over the last couple of days.

Shepherd's Pie was lovely and I have another 4 portions left after last night and tonight, and it has been going down well, so that's some reasonably solid food at last. Diarrhea yesterday was limited to only one bout, and now I am on the medication I haven't yet been to the loo today, so even if I have a visit later, that is still a definite improvement (sorry to go on about this part of my recovery so much, but it is the most significant factor at the moment, so forgive me!)

Changing the subject a little, some of you may have noticed that I added a counter to the website back at the beginning of January (at the bottom of the page). I initially did it just to make sure that there were a few people still interested (I am very grateful that there are - nearly 50 a day on average!) However, the counter functionality allows me to get a bit more information about who it is who is visiting (don't worry, I can't see who you are, just the location of the ISP that you use - i.e. usually the town and country that you access the blog from, and sometimes not even that).

I do see quite a few places that I know correlate with a particular person or people (Allentown PA USA, Dublin Ireland, West Palm Beach FLA USA, Brighton Sussex, Macclesfield Cheshire, Cupertino CA USA, Sydney Australia for examples), but there are also quite a few that I don't know and are quite surprising, for example Ontario Canada and Pretoria South Africa - I don't think I know anyone specifically in those locations (apologies if I'm wrong!).

It is fascinating to see how global this has reached though - I've had hits from all over the USA, Europe and occasional hits from other parts of the world too - let me know if you're clocking in from somewhere exotic so I can be jealous in this drizzly time of year!

Anyway, time for Shameless, so I'll sign off now

See you tomorrow!

C

Monday 2nd March

Slow progress today, but at least I have had a number of conversations with different people in the know.

I now have some diarrhea medicine, although I can't start using it until after the next bout and I've not been to the loo at all yet today (how different from yesterday!)

I have also had a long chat with the dietitian and she has given me some ideas and guidance. I've managed beans on toast today, and they went down ok but caused me to feel nauseous for a couple of hours. Vanda is cooking a shepherd's pie at the moment and I will have some of that in a while, but I'm going to make it a small portion for today and hopefully make it last a few days.

Thanks again for all the encouragement - I know this is just a phase. Hopefully some better news soon.

Cheers,

C

Sunday 1st March 2009

Wow - I wasn't expecting this stage to be so hard. This week has definitely been the hardest since the whole thing kicked off in November.

Today has been better than yesterday, but I feel drained, and I'm finding eating a real chore at the moment - I just can't find anything that hits the spot, and every visit to the toilet knocks me out. I'm sleeping a lot, but still waking up in discomfort which breaks my rest and means that I am waking up just as tired as when I went to bed.

I desperately want to start eating something more solid which will give me more energy, but I just can't face anything like that at the moment. A slice of cheese on toast is the best I have managed so far.

I know this is going to take some time, and I know it will get better, but I hope it is soon - this is rubbish!

I'm going to call the specialist nurse tomorrow - all the information I have been given suggests that there is likely to be a period of diarrhea following the surgery, but none of it suggests how long this period should be. I hope the doctor can give me something to help, as I think beating this hurdle would allow me to build up a bit more energy.

On a positive note, I managed a shower today for the first time since the op - I only have one dressing left now and that seems to be waterproof, so that's a relief because a shower is much more effective, and actually less hard work than washing at the sink.

However, the day has beaten me again and I'm heading off to bed now (at 9.30!)

Cheers

Colin.