T + 621 Happy Birthday Cancer

Posted by raetsel at Sunday, May 30, 2010

Today, the 30th May 2010, is the third anniversary of my diagnosis of Mantle Cell Lymphoma (MCL).


So...Happy Birthday, Cancer.

Of course technically my cancer is older than three years. It had clearly been going on for months and maybe years before I got the diagnosis but let's call that the gestation period and my cancer was given life on the 30th May 2007.

That is actually quite fitting as, on the fallacious premise that ignorance is bliss, prior to my diagnosis, for all practical purposes I didn't have cancer, or rather it had no impact on my life. Aside from a painless lump on my jaw I had no symptoms, it hadn't made me ill. From the 30th May everything changed, from then on there was MCL and me.

I've looked back over the entries I've made in this blog on the last two anniversaries. Two years ago I was in hospital undergoing my initial rounds of chemo. One year ago I was just starting to go back in to the office two days a week and trying to reduce the steroid dose I was on to combat my GVHD.

This anniversary finds me in at the office three days a week, off steroids since January and six weeks into the first reduction or taper in my ciclosporin anti-rejection drug. That's progress right there when you lay it out like that. If I wanted to balance things up I could mention I'm on hydrocortisone because my adrenal glands are still wonky and thyroxine because my thyroid has packed up altogether. Those are two minor downers in relation to the positive progress I've made.

I go the cinema or theatre every few weeks, eat out at restaurants now and again and get to meet up with friends in public places. I've even been on a bus!

I've got something approaching a normal life or if you prefer approaching the sort of life I used to have before I had the diagnosis. The restrictions or differences I still have are having to avoid anyone with a cold, cough or other infection, eating a relatively clean diet (though I push the boundaries now and then with a take away or a couple of lettuce leaves), avoiding crowded places or limiting my exposure to them at least.

Then there are the more medical impositions on my daily life like the 12 or so tablets I take each day, trips to the clinic every four to six weeks and a twice daily routine of applying a heavy moisturiser to most of my body. (Still at least the last will help me maintain my youthful looks. Stop sniggering at the back there.)

Taken as a whole I'd have to say I don't have much to complain about, and yet I still feel like complaining (though to whom I don't really know), so indulge me in a few moments of railing against the wind as it were. The fact that I am so close to not having any restrictions imposed on me by my condition is ironically what makes it so frustrating. I've got it into my head that once I'm off the ciclosporin and as a result most of my other drugs as well then everything will be better.

The reality of course is that it will not make that much difference in what I can do day to day and it won't make any difference to the usual trials and tribulations of work and home and life in general that everyone faces from time to time. I've mentioned before about trying not to let cancer take over my life but this is the first time I've considered the other side of that coin namely trying not to let it take the blame for things either or using it as an excuse for doing or not doing something.

I often use drafts of this blog and occasional long emails to friends to work things out in my head and then usually I delete the bulk of it and, to steal from mathematical exams, just show the problem and the solution or conclusion I have made but not any of my workings. I'm not going to do that this time as I've always said that I want this blog to be as honest as it can be to help anyone going through similar things see the experiences I have had and draw what comfort and lessons they want from it.

If it all sounds a bit whiney well so be it. Sometimes I can whine as well as the next man.

One thing I can't finish without mentioning is the support I get from my family and friends. You know who you are and I hope you know how much I appreciate you.




T + 620 iPad Pride

Posted by raetsel at Saturday, May 29, 2010

Those of you who know me in person or follow my Twitter/Facebook feeds will probably be aware that I have recently taken delivery of an iPad. So it would hardly come as a surprise to them that I should write a blog about my experiences with it.

Equally it is not a surprise that I have chosen to write this blog entry on said device and I'm doing that in what is probably the natural habitat for an iPad namely a trendy independent coffee shop. In this case it is The Urban Coffee Company in Birmingham.

So what's the big deal about the iPad? Just a big iPod touch, surely. Or just a tablet PC, they've been around for ages. Well to the first point I'd say yes the iPod touch was a great product imagine how much better it would be with a 10inch screen with full crisp graphics. To the second point, well saying it is just a tablet PC is like saying an iMac is just a PC or more specifically just a desktop computer. Technically true but it misses so much of the point.

Say what you like about Apple, and there are many valid criticisms that can be laid at their door, but they care about the design of their products and the end user experience and at the end of the day that is what makes their products so successful. The experience. This isn't just marketing hype, as Stephen Fry has expressed far more eloquently than I can, using an Apple product brings a smile to your face. Things "just work" and using them is much more intuitive than many other computing platforms. The slightly sad thing is that you only seem to get this with Apple products. They shouldn't be the exception it should be the norm to have a piece of technology that feels good to use. To quote St. Stephen again, people shouldn't have to become computer literate, computers should be human literate.

Ok enough of my soapbox. Many people have been asking what is the iPad for? Well for me it represents a convergence of devices. It is for me a portable but highly usable Internet enabled multimedia appliance. What does that mean? Well it is an Internet browser, music player, video player, ebook reader and games platform. With an iPad I don't need to have an iPod, a Sony ebook reader and a net book computer (the fact that I already have all three of those devices says more about my gadget fetish than anything. Hey I don't smoke or drink so allow me this one vice.) As many people have said you prolly won't really understand or "get" what the ipad is about until you have spent half an hour using one.

Other people have asked me do they need an iPad to which my initial flippant reply is that the iPad is not about need it is about desire, passion, lust even. More honestly the answer is prolly no, you don't need an iPad any more than I really "need" an iPod or iPhone but once you have one you will find more and more uses for it and enjoy it more and more. True they are expensive and If I hadn't recently had a windfall from a pension fund being wound up I may not have got one. (Ok that is a lie I would almost definitely have bought one I would just have felt a bit more guilty about spending the money). I just hope that when I retire and am destitute with no pension I can look back on the happy memories I had using my iPad. ;0)

This has been the largest piece of text I have typed on the iPad and it has worked out really well. The touch screen keyboard does feel a little strange at first. One person described it as like typing with frostbite but the autocorrection works really well and I haven't had to correct many typos. The only thing is at present I tend to type looking more at the keypad than at the screen where as normally though not a true touch typist I can look at the screen and not the keys.

Now I am off to the the parade to start this year's Birmingham Pride. It's the first one I have been able to attend for a couple of years thanks to medical stuff so I am looking forward to it even though the weather looks pretty dismal.

T + 614 Give Me Your Money

Posted by raetsel at Sunday, May 23, 2010

Well I finally got the printed copy of my novel Reunion ready.

http://bit.ly/ReunionBlurb

So if you know me and more importantly I know you email address then you might soon receive an email from me that looks like the following. ( Apologies in advance if you receive more than one copy I might have more than one email address for you. )

Don't forget you can also donate via my Just Giving Page, http://www.justgiving.com/SimonStanford.

Subject: Give me your money! (Please)


Hi,

Well, when I say give "me" your money what I actually mean is give Cure Leukaemia your money.

Here's the story (literally).

Summary

What?

Donate money to the charity Cure Leukaemia to help me reach my target of £250.

Why?

It's a very worthy cause.
I've benefited from the research and other projects the charity has funded as part of my treatment for Mantle Cell Lymphoma.
I wrote a book in 30 days. ( No, really. I did.)

How?

Buy a copy of my book from this link http://bit.ly/ReunionBlurb and all the profits (about £2.49, hardback or paperback ) will go to Cure Leukaemia.

Read the book online at the the site here http://www.abctales.com/user/raetsel and then donate whatever you can afford via my Just Giving page here:- http://www.justgiving.com/SimonStanford ( I'll let you into a secret, you don't have to read the book you can just donate and pretend you've read it. There won't be a test on it.)

When?

As soon as possible please. It's just a click away:-

http://bit.ly/ReunionBlurb
http://www.justgiving.com/SimonStanford
http://www.abctales.com/user/raetsel


Detail

The first draft of the book "Reunion" was written in just 30 days from the 1st to 30th November 2009 as part of the National Novel Writing Month (NaNoWriMo) competition. The aim of the competition is to encourage would be writers to stop procrastinating or endlessly fiddling with a sentence here or there and just get on and actually write a whole book.

Subsequent to that first draft of 50,000 words I've made a few corrections to spelling mistakes and continuity errors but by and large the book you can buy at http://bit.ly/ReunionBlurb is pretty much the way it was when I finished it in that last week of November, 2009.

I thought I could use this accomplishment as a means to raise money for a charity very close to my heart (pun intended), Cure Leukaemia.

Although I don't have Leukaemia but instead a related blood cancer called Mantle Cell Lymphoma, the charity funds work that is relevant to all blood related cancers and in particular helps fund the Centre for Clinical Haematology at the Queen Elizabeth Hospital, Birmingham. The doctors, nurses and all other staff at the centre do an amazing job and this is just by small way of saying thank you to them for all the help they've given me.

You can read more about the charity here: http://www.cureleukaemia.co.uk/

You can read more about my treatment for Mantle Cell Lymphoma at my blog here: http://simonstanford.blogspot.com/ ( Click on the "My Story So Far" tab if you want to read about how it all began for me. )

Thanks for reading and please: GIVE ME YOUR MONEY

Regards,

Simon Stanford.
http://bit.ly/ReunionBlurb
http://www.justgiving.com/SimonStanford

T + 605 I'm On the Train

Posted by raetsel at Friday, May 14, 2010

I'm on the train. Or rather as it appears compulsory to say: “I'M ON THE TRAIN.”

This blog post is being written on the the 10:03 from Birmingham New Street to Edunburgh Waverley. I'm writing it on my trusty EEE PC that served me so well when I was in hospital for my transplant. I'm not sure when I will be actually uploading this post to the web as I don't think I'd get a very good signal with my 3G broadband modem, my iPhone is struggling at times to even get GPRS. I might try to upload it from the hotel. (Yep my Three 3g Modem works fine from the hotel.)

The reason for being on the train to Edinburgh is to have a long weekend break with Gareth to celebrate his birthday, which is today, Thursday 13th May. I've been to Edinburgh a few times but that was mostly for work many years ago when I was a field service engineer for a CAD company. I've only had one trip to Edinbugh for pleasure and that was for a friend's stag weekend. As you might imagine that didn't encorporate many of the cultural delights on offer in the “Athens of the North” as Auld Reekie is sometimes called.

I do rememeber sitting in the communal kitchen of the hostel we were staying in on the first morning after the night before nursing a colossal hangover and taking an hour to sip a cup of hot water whilst the rest of the party re-animated themselves ready for another day of drinking. ( I'm not sure if I intended to have just hot water or if I couldn't work out in my adled state how to open the jar of nescafe. ) The fact I had a hangover allows me to date this trip to pre-June 2000 as that was when I stopped partaking of the grain or grape.

At one point someone suggested, since were in Edinburgh, we should go look at the castle and I have a memory of a slow walk up a large hill to get to it. Beyond that I can't remember much more though perhaps a visit this time round will stir some recollections.

The only other thing I can bring to mind of that weekend is that the on the second night we got the groom-to-be so drunk that as we moved from pub to pub we would arrive, take off our winter coats and put them in a pile in the corner. We then deposited the stag of honour on top of the coats ( in the recovery position of course, we had a duty of care after all ) and proceeded to consume more alcoholic libations. When it was declared time to leave the pub we would collect our coats and the groom and move on to the next venue. Ah happy days.

I love travelling by train, especially when it is on holiday. It makes the journey much more part of the holiday than if you have to drive or fly I think. Maybe it is because I don't travel by train that often but I always have a little frisson of excitement run through me as we wait on the platform. It made economic sense to come by train as well. Though we only booked the tickets under two weeks ago we got the two return journeys for just over £50. Even in the economical Martha it would have cost us more than that in petrol to drive to Edinburgh and back never mind the costs of parking in the city for 4 days. That £50 does incorporate the 33% discount Gareth gets with his Young Person's Rail Card. ( There is a certain irony to the fact that the card for 16 – 25 year olds is being used to help him celebrate his 26th birthday, but through clever timing he was able to renew his card so he can use it until March 2011).

Our train journey did not have the best of starts although the train arrived on time. A couple of minutes before its apprach a very helpful member of staff came along the platform to check who had reservations for specific seats and explain whereabouts that particular coach would be. We duly shuffled along to the appointed position only to discover the train carriages were in fact in the completely opposite order and there was much mingling of the crowd as we all moved back through the melee to find the right coach. Having evicted a squatter from our reserved seats ( the electronic display not showing our reservations ) we settled in ready to depart. Despite having booked forward facing seats we subsequenly left New Street going backwards and have continued in this manner as far as Durham as I type this. I suspect we won't be turned round anywhere now. Not that I mind travelling backwards that much but out of preference I like to see where we are going rather than where we have been.

These are minor quibbles however and the journey so far has been very enjoyable. Of course the best thing about travelling on trains is the opportunity it provides for people watching and eavesdropping on conversations. ( Though with some people on mobile phones it is hard not to overhear.)

So far this trip I have heard a very interesting conversation between a group of public health NHS managers on their way to a conference in Leeds. Surprise to say they are not enthused at the prospect of our new ConDem coallition government headed by Oxbridge's answer to Ant & Dec. In this carriage, amongst the students and business men were a very fashionably and seemingy over dressed young couple presumably off to a wedding, though as they got off at York maybe they were going to the races.

Making up what script writers would call “back stories” for my fellow passengers is surely not something I am alone in doing. Some passengers are more intriguing than others though. As I type this there is a young guy seated across the aisle who looks like a student. He is currently sketching in a new notebook ( crisp spine and he is using the 1st page, move over Sherlock). His arm obscures most of the view but it appears to be a caricature of an old woman in a windswept landscape. On the empty seat beside him is a copy of P G Wodehouse Jeeves stories. I'm not quite sure this tells me, other than confirming that I am a nosey bugger.

We have just passed Newcastle upon Tyne where the train manager changed from Neil to Morag. Hopefully her announcements will be followed by translations into English as the combination of her broad brogue and the poor quality tannoy makes them rather hard to follow.

Only half an hour to go and we will soon be crossing the border ( though unlike the night train I don't think we are bringing the cheque or the postal order. ) I had better sign off and make sure I have my passport ready.