Saint Lymphoma's Institute

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

2006-08-17T22:29:00.000+01:00

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 Dictionary.com). 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 Blogger.com 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 me......in 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

False Alarm!

2006-07-21T11:36:00.000+01:00

In the words of the great man himself I "got a lot a livin' to do" .............so 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.

Less ouch but still worrying......

2006-07-12T22:27:00.000+01:00

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.

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

2006-07-07T17:38:00.000+01:00

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

Where should I begin?

2006-06-28T23:01:00.000+01:00

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!

Why So Late With The News?

2006-06-22T09:27:00.000+01:00

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 way......so 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!

TTFN

Mona Lisa meets Venus de Milo

2006-05-24T00:43:00.000+01:00

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

A Pain in the Backside

2006-05-23T22:04:00.000+01:00

Today was bone marrow biopsy day.......oh joy!

It went something like this.........

A little waiting around
A little time spent finding a suitable vein for the cannula
A little more waiting, enlivened by the perusal of property porn in the form of last week's 'Country Life'.
(I presume this magazine must actually be read by people who are not waiting for unpleasant medical procedures, but, I must confess, I associate it only with the scent of disinfectant and, its eternal waiting room companion, 'The People's Friend')

Then finally into a side room, lay down, have 10ml of something or other injected via the cannula and then wake up an hour and a half later with a large plaster on my behind.

NB:
I'm not sure what language the label on this diagram is in but I can nonetheless offer the following rough translation:

OOUCCHH!

Regrettably your roving reporter forgot to take his camera on this occasion, thus the need for international pictorial assistance. I must also report that my opportunities for candid shots are likely to be limited now, as Saint Lymphoma's doctors and nurses have been seen taking sneaky peeks at this bulletin since it's online publication, and some of them may not want to be featured in all their glory (or in their uniforms - thank you, Kavi) - I shall just have to be more cunning in future!

Bone marrow samples normally take around a week to analyse apparently, so the results should be available at my appointment with Le Grand Fromage on 2nd June.

So, having been sedated, speared, then woken and given the obligatory cup of tea, I was driven home by Jessica and went back to sleep for a couple of hours as I was still feeling a little drowsy from the anaesthetic.

I was woken up by Morgan who had done a fine drawing of a snake for me - see below - which I must confess I struggled to appreciate as much as I might have because of the rather large ache coming from my rear. This has now subsided somewhat and, if I remember correctly, should be gone in two or three days.
I hope so!

I've been feeling much better over the last week than I have for a long time. Having apparently reached the end of this phase of chemo, I can at last take control over my life, and my body, again.

I've been out for a couple of walks/runs and been swimming and I can't tell you how fantastic it feels just to be able to do those kind of things again, not to mention taking a more active role with Morgan . Obviously my fitness is not what it was, (in fact it's terrible!) but at least I know I'm not going to be poisoned again next week, and that means I can actually take some exercise and start trying to get back to the level I was at in December before all this landed upon me.

So, no more appointments now until the CT scan on the 1st June, .......and then....... the crunch.

Whilst searching for suitable images to accompany this post, I came across the following tempting looking orange button offering the opportunity to watch a free demonstration video. Given that I'd done an image search using the term 'bone marrow biopsy', I was a little surprised to find this on the first page of my results!

Well, I just had to have a look didn't I?

Wouldn't you?

What do you know! You can train to perform a bone marrow biopsy yourself online. Wow! Is there no end to what you can do with technology these days?
I will, of course, be visiting http://proficientprocedures.com to avail myself of this great opportunity, so that next time I'll be able to do the job myself - with the aid of a knitting needle, a mirror and a large bottle of whisky.

Alternatively, if you have a 'medical procedure' coming up yourself why not do as they suggest!!?!

Or not..........

More anon when the shit hits the fan...................................................................................................

An Early Summer Afternoon in London

2006-05-17T16:16:00.000+01:00

Raindrops on roses and teardrops on kittens,
Ten plastic dinosaurs wearing green mittens,
Builders from Poland all banging next door,
I think I'll go lay in my bed and snore.......

The Eternal Truths of Life: Part One.......

2006-05-17T10:49:00.000+01:00

EXTERMINATE!!!

2006-05-16T02:23:00.000+01:00

Bulletin Nine: The Pulp Fiction Edition

2006-05-16T01:46:00.000+01:00

Hello from all here at St. Lymphoma’s, and welcome to this the ‘Pulp Fiction’ edition of my medical bulletin.

Those of a nervous disposition should not be worried. My choice of title does not reflect a shift towards graphic depictions of sex and violence!

Issue Eight found me clearer in mind, following my discussions with Le Grand Fromage, and awaiting the last of my poisonings, which was carried out on the 9th May (one week ago today).

I must have become very blasé about it all as I completely forgot to go in the day before to get my blood count checked. This meant I had an earlier start than usual as I needed this test completed before I could go ahead with the treatment. All went much as before, although I was sent home without any medication – which I also failed to notice…….I think my brain power is diminishing rapidly with each dose. Thankfully that should be the last one, but I’ll know more later this month.

So, there we go…….

Since my treatment I’ve felt very tired and pretty nauseous – something which seems to have got worse as the treatment cycle has progressed. Jessica reports that it sounds very like being pregnant, but I am happy to report that my bulge seems to have reduced in size rather than grown over the last few months, so we can rule that complication out.

As some of you may have noticed I’ve finally got the rest of the Bulletins up on the net. It’s been strange reading through them. For a start, I had forgotten quite how long this has been going on for. I couldn’t believe I’d had the first of my chemo poisonings in January – no wonder I’m heartily sick of being sick.

My attitude seems to have changed too, but gradually, without my noticing it. When I read back to my first treatment what I wrote was, unsurprisingly, full of anger and fear. Both those emotions seem to have drifted away from me, and now what I feel is frustration primarily, that I’m unable to do anything at all except sit in front of the computer……….. and sleep.

Of course, I’m putting out of my mind all of the various possibilities that may arise as a result of my forthcoming tests, and focussing solely on getting this part of the treatment over with. As Jessica would tell you, when it comes to not worrying about what I can’t control (i.e. putting my head in the sand) I’m truly world class, and I intend to make full use of this skill over the next few weeks.

I’m sure that fear and anger will return from time to time, but at the moment they’re in abeyance, probably because I’m assuming that, whether I achieve full or partial remission, I will at least get some break from treatment.

If this turns out not to be the case then I shall certainly be angry, frightened and very upset – not that any of those emotions will do me the slightest good of course, as I’ll just have to grit my teeth and get on with it as before.

I guess that’s what is described as ‘fighting’ cancer.

So, some dates for the sicky diary……….

Blood test – Thurday 18th May – This should be routine. They’ve tested bloods a week after each poisoning so that if my neutrophil levels drop too far they can give me a booster prior to the next poisoning. As I’m done with the chemo for now (apparently), I’m not quite sure what the purpose of this test is on this occasion, but ‘ours not to reason why’……..

Bone Marrow Biopsy – Tuesday 23rd May – My second one of these, but the first since the start of treatment. If it’s anything like the last one I’ll be guaranteed a nice mid-morning snooze for a couple of hours and a large bruise on my hip.

CT Scan – Thursday 1st June

Consultant’s Appointment – Friday 2nd June – to discuss the test results and decide what happens next

What busy lives we sick people lead…..I just don’t know how I shall fit it all in.

Thanks once again to everyone for your help and support.

All chants, prayers, crossed appendages, and any other expressions of superstitious goodwill will be gladly accepted.

Love

Dave

Take These Chains From My Spleen and Set Me Free.............

2006-05-09T22:12:00.000+01:00

Bulletin Eight: Where is it?

2006-05-08T11:02:00.000+01:00

Back down the page between Bulletins One and Two of course - where else?

Bulletin Seven: March 2006

2006-05-08T10:56:00.000+01:00

Just click on a page to zoom in and read

Bulletin Six: March 2006

2006-05-08T10:20:00.000+01:00

Just click on a
page to zoom
in and read

Bulletin Five: February 2006

2006-05-07T16:12:00.000+01:00

Just click on a page to zoom in and read

Bulletin Four: February 2006

2006-05-07T00:24:00.000+01:00

Just click on the page
to zoom in and read

Bulletin Three: Appendix One: The Drugs

2006-05-06T23:50:00.000+01:00

Just click on a page
to zoom in and read

My apologies for not citing the sources for some of the research mentioned in this post. When this was written it was really only for private consumption!

Bulletin Three: January 2006

2006-05-06T01:19:00.000+01:00

Just click on a page to zoom in and read

Bulletin Two (part 2): January 2006

2006-05-06T00:01:00.000+01:00

And here's the rest!

Just click to read.

Bulletin Two (part 1): January 2006

2006-05-05T22:12:00.000+01:00

Hurrah! - Technical difficulties resolved................
I am delighted to be able to bring you the missing issues of the St. Lymphoma's saga.

As with Issue One, you'll find that each page is in picture format so just click on the page to zoom in and read.

P.S. I got rather carried away with my photography in this one, which has necessitated splitting the issue into two posts.

My apologies if each page takes some time to load........................., but then again consider yourself lucky: the original issue was sent out in the form of a monster Email attachment which may still not have reached the inboxes of the unfortunate recipients!

Bulletin Eight: April/May 2006

2006-04-30T21:56:00.000+01:00

OK, OK......I said there'd be copies of the previous editions and you're wondering why we've skipped straight from issue one to issue eight?

Technical difficulties, of course!

But rather than let this hold up the whole shebang, I thought I'd get on with letting you know what's been happening here at sicky central.

Firstly, You may have noticed a distinct delay in producing this issue. I wish I could blame this on the hours of intensive work I've put in to get this online but, unfortunately, I can't, as it took me all of an hour and a half (but don't tell anyone else). Instead I shall put it down to a combination of illness and ennui. There's only so much to be said about these four walls and the inside of my head after all.

I had poisoning number four of the planned six on March 28th, which was followed by the usual unpleasant week or so, but, rather than recover, I then went into another dip. I thought I'd felt tired before, but obviously not! In fact, I was a bundle of energy compared to the shambling zombie that my siblings had to put up with during their Easter weekend visit to the capital - thanks folks and sorry 'bout that.

So, I just picked up in time to be poisoned again ........number five on April 18th. Thankfully my reaction this time wasn't quite as extreme, but I can certainly feel that the chemo is building up it's effect, as expected, and I'm just generally more fatigued than I was at the start of all of this.

So what have I been doing with myself.........

Well, indulging in musical piracy via the net, and musical nostalgia via the digitising of twenty year old tapes of 'F*** the Drummer' whose logo was the cupcake you see on the left. I was proud to be the rhythm guitarist, sometime vocalist, and undoubtedly least talented, member of this fine beat combo.

For those who weren't there at the time, which will be almost everyone as the band did outnumber the audience on this occasion, I'm the one with the hair.

Never ones to miss an auspicious astral coincidence, this picture, taken in May 1984, commemorates a performance timed to provide the soundtrack for a partial eclipse of the sun.

No sniggering at the back please......

Behind the musicians, you may notice someone who appears to be trying to block out the noise.

In fact this noble individual had foolishly volunteered to make a recording of the whole event, not realising that many of our songs tended to be rather extreme in length. You see him monitoring the sound prior to making fine adjustments to his sensitive hi-tech recording apparatus (see left). I believe he subsequently went on to work as a recording engineer with U2.............or perhaps not.

I'm sure you'll all be delighted to hear that CD's of this historic performance are still available at a very reasonable price, with all proceeds going to St. Lymphoma's.

Speaking of that august institution reminds me that you may have seen it featured in the national newspapers over the last couple of months, as a result of it laying off 500 of it's staff. I was hoping that there'd be noone left to poison me, but sadly haematology services seem to have been unaffected by these changes.

Knowing that this course of treatment was drawing to a close, my thoughts have begun to turn more and more to what might happen next. At the clinic appointment immediately prior to my fourth chemo, the doctor assured me that he could see no reason why I would need to have a transplant if things continued as they had been. Oh happy news!

At the next clinic appointment I inquired of another doctor what she thought was the most likely next step in my treatment. "A bone marrow transplant" she replied.

Confused patient!

Thankfully, I was rapidly able to get an appointment with the Big Cheese in order to clarify things. That's him over there. Now I must admit to having expressed doubts about the professors 'bedside manner' in previous issues, but on this occasion he was most sympathetic and very clear. So, I will endeavour to be just as clear in passing on what he said to me..........

What might happen next.............

Three weeks after my final chemo session, I'll have another CT scan and a bone marrow biopsy and then be seen again in clinic on 4th June. It'll be the results of these tests that determine what will happen to me after that. There are a number of possibilities:

If the scan/biopsy are clear of any signs of cancer .................. Remission

Then the first thing to do will be to watch and wait. 15-20% of patients who achieve complete remission after their first chemo cycle require no further treatment (please let that be me!).
If, as is still likely, the cancer does return then the next step will depend upon the length of any remission. If I've been in remission only for a relatively short period (6months...3 years) prior to the cancer's return, then I'll have another cycle of chemo followed by a bone marrow transplant. If the remission is longer then it's less easy to predict what might be done as new forms of treatment may be available by then.

If the scan/biopsy show signs of cancer..................

Then what happens next depends upon how much cancer is detected. If the scan results are the same or worse than the mid chemo scan then it'll be more chemo and a transplant. If the cancer has reduced to a minimal level and I am 'well', then I'll be said to have achieved Partial Remission - and it's likely that there may be a period of watch and wait to see if the cancer will remain stable at this level without affecting my daily life. It's likely though that in the end this too will mean more chemo and probably a transplant sooner rather than later.

Sadly, even a transplant offers no guarantee of a complete cure and comes with a 10% mortality rate as well as the possibility of significant side effects.

So there you have it! it's not a cheerful set of options but, strangely enough, I just feel very relieved to finally understand what the options are and the logic behind each possible choice. I plan to do some research to try and prepare myself better for any choices that I might need to make, and my two lucky siblings are being tested to see if either of them would be a suitable stem cell donor. Oh, and I've given up smoking (again and again........)

Thank you to everyone for their interest and support. We really appreciate it.

I suspect that I'll not issue another full bulletin until after 4th June, but do please drop in at St. Lymphoma's site anytime as I'm sure I won't be able to resist posting more bits and pieces. If you want to leave a comment or message then just click on the word comments in blue below or the envelope if you want to send e mail!

Lots of Love

Dave

How to Publish a Blog

2006-04-28T17:14:00.000+01:00

How to Publish a Blog and Why You Should

Just in case anyone wants to know how to do something like this then click on the purple link to be redirected........

I followed the simple instructions on their site and look where I am now ma!

Bulletin One: January 2006

2006-04-28T16:40:00.000+01:00

The two pages of this bulletin are in picture format so if you click on them in turn then you'll be able to zoom in and actually read them !

How it all began....

2006-04-28T16:23:00.000+01:00

So.............to set the scene.........

Just before christmas 2005 I was going for a run one evening when I felt an unusual twinge in my side. It disappeared after a couple of minutes and I thought no more of it. The next day after going to the gym I started to get a lot of pain in my lower back and abdomen. Initially, I thought I'd overdone my exercising and pulled a muscle, but the pain got gradually worse over the next two days to the point where I was unable to lie down or sleep. My first trip to casualty produced a diagnosis of constipation.........so several packets of laxatives later I still had the pain but now accompanied by diaorrhea..............

My second trip to casualty was via the GP, and I was actually assessed by a surgeon and admitted straight away. I had hepatosplenomegaly - one of those classic medical terms which is actually a simple description in disguise - i.e. an enlarged liver and spleen.

They ran various tests on me including a very unpleasant CT guided needle biopsy on a mass they'd detected in my abdomen. It was this biopsy that confirmed their tentative, and at this stage unspoken, diagnosis of follicular lymphoma. Unfortunately for me I had to wait over the christmas holidays to get confirmation of this result, but at least I was well enough to go home...the pain having subsided after a week in hospital.

How did I feel at this stage?

Well..........ill (of course) and very frightened.............for more check out Bulletin One: January 2006

Hello and Welcome........

2006-04-28T13:15:00.000+01:00

Hi everyone, and welcome to this the transfer of St. Lymphoma's into cyberspace.

For those who don't know, Saint Lymphoma's news has been circulating in various, sometimes even legible, formats for the last four months keeping all updated about the progress of my condition. News and views have also been offered on happenings, both real and fictitious, in the wonderful world of the NHS, and on some of the treatments, both real and fictitious, available to those like me who are unfortunate enough to have cancer.

For those unlucky enough to have missed out on these offerings we are happy to announce their arrival on the net!!

The following postings are the various bulletins from January thru' March and the last one is the 'new news' for those who are sick to death(excuse the pun)of all my yakking..............