Thursday, August 17, 2006

This is...............

Fear not.....this is not the end for me, but only for the Saint Lymphoma's blog.

Saint Lymphoma's Institute itself is in rude good health and continues to glower over the neighbourhood reducing property prices and increasing blood pressure. I understand that they have a full programme of events planned for the remainder of the year, however I can say, without regret, that I have no plans to participate or report upon them. I am not even tempted by the gala opening of their new house plant intensive care unit.

I shall of course miss the uplifting works of art that have formed such a vital part of this newsletter, not to mention the general ambience of this venerable institution. However, I shall console myself with the thought that I can always pop in should the urge take me?!?

And what about me?

Well, I am happy to report that I too am in rude good health. That's rude as in 'vigorous, robust and sturdy', although 'lacking the grace and refinement of civilised life' might also apply (thank you I am pain free, apart from that which I inflict upon myself in the gym, and I'm enjoying running around London again..........well, not all the way round just yet. I've lost 3/4 of a stone, and I've bleached my hair blond. Not sure why apart from the fact that I wanted to. I think it looks quite good so we might all have to get used to it. On the other hand, Jessica hasn't seen it yet..............................................

So why end it now?

I feel like it's time to look forward rather than back. I can't pretend this thing never happened to me, nor do I want to, but equally I don't want to be defined by my disease.

So why are you telling us this.........or...........why don't you stop blethering on then?

I guess that in order to look forward I have to look back first and give some thought to what I've been through. I also want to draw some conclusions and offer some impressions for anyone else with lymphoma who stumbles across this infinitesimal corner of a virtual field that is forever Corby. Inevitably, much of what I wrote as I was going through the treatment was coloured by my own fear and exhaustion. If I'm going to leave this blog sitting here for all to see, at least until pull the plug on it, I'd like to end on a positive note......because that's how I'm feeling.

This does leave me with a small problem though..........namely, how to keep you all visually stimulated while I do my cathartic stuff for the last time.

So with that in mind, and in the hope of maintaining some thematic consistency, I did a quick search for images featuring 'the end' in their titles, and I have incorporated them throughout the post in the hope that you'll all still be awake at the end of 'the end'.....or something like that.
These kind of searches can lead you to some very strange places though and, in the spirit of strangeness, may I present to you the Winners of the Mid-Atlantic Quartet Harmony Championships 1975............The Reign Beau's End

Great name guys.............and how about those outfits.......................

OK then Dave, give us your words of wisdom

When I started out on this long and winding road (cue orchestra) I was afraid of dying (understandably) and I was afraid of what the treatment might do to me, but all my fears were amplified by the fact that I got ill so suddenly. From knowing where I was and who I was (at least some of the time) I felt cast adrift. I couldn't make sense of what had happened to fact, I couldn't believe it had happened to me. I could find nothing positive in anything I experienced and even the love of my family was overwhelmed by my fears about how long I might be around to share in it.

Now I can believe it happened. I still don't like it but I have accepted it. I have accepted that I have had cancer and that it may come back. But I also know how lucky I am that I got the type of cancer that I did, that I responded to the treatment as well as I did and that I had such fantastic support from Jessica, Janet and Morgan and from all my family and friends.

There are lots of other sites providing detailed information about lymphoma in all its various forms (see the links on the right sidebar for just a few), and I don't propose to offer
advice, but I do want to highlight my own experience of CVP-R chemo. I was very frightened by the list of possible side effects of this treatment regime and I think this fear might have coloured the way I wrote about my treatment. I'm happy to say, that beyond feeling exhausted, and suffering from mild nausea towards the end of the treatment cycle, the experience really wasn't so bad. I managed to keep my hair and, with the aid of this blog, my sanity.

OK, lecture over........more visual distraction is called for

This picture is enigmatically entitled 'Jonathon at the End of the Day'..........I love his expression.....and his wallpaper........and what is he planning to have for his supper?

Any other business?

Well no, not really apart from to say............................

(a) thank you to everyone for putting up with me

(b) that I'M ALIVE and I intend to stay that way as long as possible and enjoy every f******* moment.

(c) that an au courant blog will be launched shortly to assuage my newly developed addiction for writing rubbish and inflicting it upon an unwilling readership. But until then I bid you goodnight and may your god go with you

Friday, July 21, 2006

False Alarm!

In the words of the great man himself I "got a lot a livin' to do" don't you step on my hound dog............or something like that.

Off to St. Lymphoma's this fine sunny morning feeling far too healthy to believe there was a problem, and the smile on the doctors face was enough to tell me that I was right. No signs of the big C on the scan.......... and no explanation as to why I should have got the pains in the first place. They want to do a blood test to check that my pancreas is functioning OK but they don't expect that to be the source of the problem, so I guess I'll just have to put it down to too many sit-ups.

While waiting for all this to happen we've been sunning ourselves on the Costa Cromer, so I'll sign off with some illustrations of traditional British seaside pursuits as demonstrated by the Corby family.

Playing crazy golf
Staring pensively at the sea
And being trampled underfoot by a prehistoric herbivore

I know I must have induced compassion fatigue by now so I promise to remain well for as long as I possible can!

Thanks to everyone for your concern and support.

Wednesday, July 12, 2006

Less ouch but still worrying......

So here I am back on the medical treadmill again......CT scan booked for Monday 17th and clinic appointment on Friday 21st. Oh joy!

Feeling a bit better though which has got to be good news. My 'friend', as Jessica calls it, is still with me but I can feel it less than before, and I'm definitely more energetic.....

So maybe maybe it was just me overdoing it in my eagerness to get my fitness back?

Fingers firmly crossed here.

Friday, July 07, 2006

Ouch..........Oh Shit.

No photos and little humour this time I'm afraid.

Thanks to all who were able to attend the St. Lymphoma's Summer Fete. We were blessed by fine weather and fine wine, and a good time was had by all I believe, although my memory of the latter part of the evening is somewhat hazy.

Unfortunately the evening seems to have used up what luck was available to me. Over the last couple of weeks I've developed some mild, and sadly familiar, aches and pains in my upper abdomen. A trip to St. Lymphoma's and quick chat with the doctor, and I'm back on the medical treadmill again. He would neither confirm nor deny, as the politicians say, but felt I should have another CT scan to see what's afoot. So I'm waiting for a date.

more anon

Wednesday, June 28, 2006

Where should I begin?

Ooh..................this blog seems to have got remarkably long remarkably quickly.

For those of you wondering where to start, post number one can be found in the archive section (see the right of the page) under April 2006!

Thursday, June 22, 2006

Why So Late With The News?

Sorry to all those awaiting the news with baited breath.............I think everyone knows by now anyway..............but I've been too busy LIVING!

As you can see 'living' included a family trip to the zoo - simple pleasures!

If I look a tad serious above, it's only from the effort of holding in a stone's worth of steroid induced stomach, and from keeping one eye shut and the other open......of which more later.
So much has happened and there's so much to say that the only place to start is where I left off last time. So, taking a deep breath and marshalling what remains of my memory, Let me begin......... it's only three weeks ago but it already seems like aeons.

After my bone marrow biopsy I had a few days to recover before having my CT scan. I'd been feeling pretty well, but the anaesthetic seemed to be enough to wipe me out for two or three days. Unlike the biopsy, the scan is not too unpleasant a procedure - unless you find the prospect of consuming a jugful of watery orange squash particularly concerning. More stressful than the tests was the waiting, although more for Jessica than me. I once again engaged my ostrich-like approach to these things and remained unphased until the morning of my appointment, when I was forced to resort to some very loud music to calm my shredded nerves - and further jangle Jessica's no doubt.

And then it was off to St. Lymphoma's . I think we'd both already decided what we would hear and were expecting partial remission at best. You can't imagine how long the wait felt, even though I had the distraction of getting yet more blood taken and tested prior to the appointment. The Big Cheese was away at a conference.... isn't it always the we were seen by a young scottish doctor who gave us the glad tidings.................

(For those of you thinking "for goodness sake get to the point")

Here is the News!

  • No signs of cancer were detected in my bone marrow sample, and my scan also showed no evidence of any abnormalities. I am therefore classified as being in Complete Remission Hoo...F*****g...rah!

What happens next?

  • I've an appointment in three months time for a clinic review, but if I have any concerns or symptoms prior to the appointment I can be seen the same day by the docs at St. Lymphoma's (very reassuring). They don't generally do regular scans as these can actually induce lymphoma if carried out too frequently but, in view of the fact that my cancer presented itself suddenly at an advanced stage without prior signs or symptoms, it's likely that I'll have a precautionary CT scan in six months time.

What's the prognosis?

  • Difficult to say! There's around an 80% chance of the lymphoma returning, so this is almost certainly not a cure, but there's no reason why the lymphoma can't be treated again if it does return. The fact that I had a good response this time may be an indicator of my likely future response to treatment.
  • As to when it might return, that could be anytime between six months and never - obviously the longer the better as far as I'm concerned.

Is there anything you can do to improve your chances?

  • Yes - resist the temptation to start smoking yet again and try and stay as fit as I can so that if it does come back my body's in the best shape to fight it..............and, maybe, be happy and live whatever life I've got to the fullest.

We were obviously delighted by the news, but our reactions were more of relief and release of pent up emotion than of joy or euphoria. What do you do in such a situation? Well, we went across the road to the gym where I made the symbolic gesture of renewing my membership while Jessica sat at the busstop outside and wept! I'd already had my own tearful episode during the appointment.

We then went home and drank a bottle of champagne.

As you can see, I was barely fit enough to get the bottle open....

Then it was time for a sleep!

and then off to Brighton for more alcohol with old friends....
and finally back home to meet Morgan and his grandma on their return from a long weekend in Paris.

As you can imagine, I was keen to get on with some of the things I'd wanted but been unable to do whilst I'd been ill - like planting some flowers in the garden. So monday found me sticking marigolds into the ground when, leaning forward, I managed to impale my right eye on the end of a phoenix canariensis frond - that's a canary date palm and it's sharp!

So it was back to hospital for me - first to St. Lymphoma's and then to Moorfields Eye Hospital where I used to work. Never imagined I'd be back as a patient. I was actually seen by a doctor I'd done some teaching with. He had a scrape at the front of my eye, gave me a prescription for some antibiotic eyedrops, recommended some painkillers and sent me on my way with both eyes clamped shut. So my first week of official 'wellness' was spent tottering gingerly around the house with my arms outstretched in front of me.

So where do we go from here?

Just before I became ill I was reading a book by the cyclist Lance Armstrong about his experience of testicular cancer. He was given little chance of survival but went on to make a full recovery - and to win seven consecutive Tour de France titles. So the message for me is clear...... I should take up cycling.......

No, actually, I was struck by the fact that he found the period after he was given the all clear as hard, if not harder, to cope with than the period when he was undergoing chemotherapy. I hesitate to compare my situation to his, but I can understand how he felt I think - although I'm not quite sure why. I know at the moment I'm certainly feeling a little lost and directionless, as well as experiencing some anxiety and depression, which, on the face of it, makes no sense at all as I know should be leaping around enjoying every moment my recovering health allows me. I understand, however, that whilst being utterly illogical, this is not an uncommon reaction. So why should I be feeling this way? Let me make a few guesses.........

  • Having had a very clear purpose and focus to my existence over the last six months this has now been removed. The target has been reached, so what next?
  • Although the result was the best it could possibly be, the cancer is still highly likely to return and, even if treatable, this means more chemo and/or a transplant. So whilst I'm celebrating my result - and believe me I am, and I'm grateful for the many congratulations I've received - this is not the end.
  • The awareness that one should be 'making the most' of every moment can create a pressure of it's own. The temptation is to constantly be assessing whether what one's doing is 'worthwhile'.
  • Having got through the treatment, I now have both the time and the energy to set my emotions free - this suggests of course that I have a choice in the matter, whereas in fact I feel that my own emotions are letting loose on me.
  • I'm just a miserable old sod at heart.

Besides my own mental frailties, a vital question is nagging at me:

What to do with St. Lymphoma's News?

Obviously, I wont need to post regular updates about my health. In fact I hope never to have to do so again, but, on the other hand, I've grown rather fond of the opportunity to exercise my brain this blog gives me. So, I think I shall continue - perhaps re-branding is required? I'm open to suggestions.

Anyway, we can all look forward to the last of the old style St Lymphoma's reports which will provide full coverage of the highlight of this Summer season:

St. Lymphoma's Annual Barbecue and Fete

To be held in the graceful grounds of 'Rattling Mansions' here in darkest North London - I look forward to seeing all of you there.

Until then I leave you with a couple of pictures from last weekend's escape to the Lake District.

Morgan in midstream ...... and an Old Wreck (how appropriate)

I love the optimism embodied in that 'keep clear' sign!


Wednesday, May 24, 2006

Mona Lisa meets Venus de Milo

Another artistic highlight from the corridors of St. Lymphoma's