For those of you who might remember about four years back, I sent out a series of emails chronicling my treatment for a rather nasty form of cancer called Mantle Cell Lymphoma. The initial purpose of writing was to keep our wider family and many friends, informed, and to reduce the flow of lovely, concerned, but ultimately taxing enquiries to my lovely wife Jane, who’d had enough to put up with being married to me for 40 years and now had the sick version being endlessly enquired about. So I cobbled together an irregular email bulletin which I could send out from wherever I happened to be – home, hospital, chemo suite, toilet, etc. From the couple of dozen original recipients who apparently found my updates interesting, I received a steady flow of requests from other friends, villagers, acquaintances, parishioners, drinking buddies, ne’er-do-wells, hobbledehoys and lovely people of whom I had never heard, to be included on my mailing list. After a few months the mailing tally exceeded 100 and I was getting many messages of support, encouragement, love and humour in reply; (plus excitingly, offers of easy access to drugs, equipment and exotic fashion in fields of endeavour of which I was previously totally unaware!). The writing was a great way for me to fill the long tedious days of hospitalisation, treatment and slow recovery. The emails culminated in early 2011, when, after many alarms and excursions, a successful Stem-Cell Transplant allowed my discharge from the fabulous Christie Hospital in Manchester in complete remission, but with the knowledge that the cancer would, at some point, return.
Yep, three years later the little bugger has come back. So I’m currently writing this, sitting up in bed at The Christie trying to reinstate my health bulletins but in a new sexier, more dynamic form appropriate to my new profession as a fashion photographer, of which more later. So I’m going to write down some thoughts and observations on, well anything really; poetry, poo (bit of an authority on this subject), pies or piety, to alliterate but a few. Close family and friends will be up to speed with what’s been going on recently, so will they please forgive any repetition as I reinstate these bulletins to everyone on the earlier mailing list who expressed an interest, (or who had access to said drugs, equipment, exotic fashion, etc, wink and tap side of nose).
So three years of high quality remission ended last September when a blood test showed a plummeting ‘platelet count’ (that’s the bit of your blood that makes it clot and heal wounds, bruises, etc.). But after a flurry of tests, scans and, my personal favourite, a bone marrow biopsy, where they bore into your pelvis with an auger, eventually revealed that the cancer had returned, but only in a tiny, less than 1% in the bone marrow only. Since then I’ve been feeling fine, the blood platelets recovered and I’ve been carrying on as normal. The Lymphoma team at The Christie decided to adopt a watch and wait policy as the cancer was “indolent” (love that word. Think I’ve got a wide streak of indolence in me!). Anyway, indolent or not, the bugger was going to cause trouble sooner or later so we’ve had several meetings with the consultants to develop a strategy for when it does.
Option 1 was chemotherapy, with a couple of alternatives. Option 2, was another stemcell transplant, but this time using donor cells, not my own stem-cells as before. However, a transplant requires me to be in remission, so effectively this therapy had to follow option 1 not simply replace it. Donor stem-cell therapy is in its infancy and consequently fraught with complications and extreme risk. The upside was the 30-40% possibility of a cure or long-term remission. The downside, and it’s a very big one at 60-70%, is seriously buggering-up my immune system, or worse maybe a visit from the grim reaper. Well, you can see my dilemma – there ain’t one! As I’ve said many times to close family and friends, I’ve had the bad news four years ago; incurable, terminal cancer does exactly what it says on the tin, so I’ve there are no surprises here.
The great thing is that, up to a few days ago I was perfectly fine, enjoying working five days a week, just had a week’s holiday meeting up with two of my brothers and thinking about retiring properly from the really tough job of photographing beautiful young ladies modelling this seasons bikinis! (If you don’t believe me follow the link to see the fine body of work (literally), that I and my lovey assistant photographer, Liv have been creating recently for my daughter’s company, Country Attire – http:// www.countryattire.com/womens/swimwear.html . Pretty well all the photography on this whole website is my work over the past three years and I’m very proud of the pictures and the company, which is a tribute to daughter Jenny and husband Richard who have built it from nothing in eight years). I’m now thinking of retiring fully, maybe travelling a bit, caravanning (Shut up Karl!), writing, DIY, gardening, you know – stuff, or as my darling wife more technically calls it – Faffing about? I was feeling pretty fit for a 66 year old and plans are afoot to sort out my Angina which has been my biggest limiter. Then last week I felt a bit off colour, with shivers, trots, temperature and reduced appetite. On Saturday I checked back in for tests at Christie, which is where I am now. So far they’re not sure whether I’ve picked up a bug, or it’s the cancer beginning to rise from its indolent bed. I’m having a CT scan today which, in a day or two will tell us where the little bugger’s at.
I’m actually feeling fairly OK at present, albeit with some strange developments in the toilet department which I’ll save for a later edition, and I’m hoping to be sent home before the end of the week. The Lymphoma team at the Christie is amazing and holds my complete confidence, so thoughts of chemotherapy are not as daunting as they were four years ago. Huge strides have been made in recent years to make these treatments much more finely focussed on the specific condition, with far fewer side effects. And my consultant, Professor John Radford, a world authority on Lymphoma, is very hopeful to get me started on a new American wonder-drug which has delivered some amazing successes in the US, combatting precisely the Mantle Cell Lymphoma from which I suffer. It’s not a cure, still a chemo, but one that can be taken orally at home. So no long hours of schlepping down to hospital every week to sit for bum-numbing hours as bags of poison are dripped through painful canulas into the back of your hand.
But more of this as things develop. Keep yourselves pure for me in the interim and of course do reply if you feel the need. Watch this space…