#2 – It’s about me… again

Sooooooooo, it seems I’ve been malingering, ‘swinging the lead’ as it were. Last month’s ‘Topic’ saw me laid up in the Christie hospital with an erratic temperature, an unpredictability of bowel and a general ‘not-rightness’, which, for those of you who know me, will recognise as not right at all. Anyway, after numerous tests of every fluid the human body can produce, an X-ray and a CT scan, the assembled doctors felt that I had acquired some kind of virus which was elusive enough not to show up on any of the tests done and didn’t appear to be related to my cancer. So after four days I was discharged on the 26th June and told to return on the 14th July for the results of the CT scan. Still feeling a bit washed-out I was never-the-less delighted to return home to some decent food, as hospital food, even at the otherwise most excellent Christie, is still frankly atrocious.

The following week held further excitements; I was scheduled to have an angiogram at Stepping Hill hospital, Stockport; a procedure I was very keen to undertake to alleviate my angina (a heart condition probably caused by my earlier chemotherapy) which was causing me increasing breathlessness and limiting my range and ability to do stuff. The cardiology doctors were anxious I was clear of whatever infection I’d had the week before, which a blood test on the Monday confirmed, so on Wednesday I reported for the angiogram. This is a quite common procedure these days for inspecting the arteries supplying blood to the heart.

So here’s the dilemma; they make a tiny incision into your femoral artery at your right groin into which is inserted a tiny tube. They then proceed to ‘furtle’ (technical term) the tube through your arteries all the way up to your heart. Once there, they inject an X-ray dye into your bloodstream, causing a sensation not unlike incontinence (not actual you understand, just the sensation!) as a warm glow spreads warmly around one’s nether regions. All pretty painless, although a bunch of people poking about in a chap’s intimate little places can be a bit startling, to say the least! Anyway, when they’re done with furtling, they plug the arterial hole, placing a large patch of what appears to be a Sellotape over the tiny wound. It’s a bit sore for a few days of course, but the worst bit is now I’m looking with some trepidation at the way the Sellotape seems to have fused to my delicate, hirsute and very sensitive skin. Had I anticipated this issue a prudent solution would have been a ‘full Brazilian’ where some careful shaving might have pre-empted the dilemma; indeed I was surprised the medical procedure didn’t include a quick shave. But that’s ‘the funding cuts’ for you, no frills and definitely no cosmetic procedures.

However, the removal of the Sellotape patch seemed akin to a bikini wax! (Err….I’m reliably informed). I wasn’t looking forward to it at all. There’s that inevitable choice between ‘rip and scream’ or the more torturous process of ‘peel and whimper’, each seemingly equally awful. In the end I opted for a median route, fearing that the former might reopen the incision causing gouts of arterial blood hosing all and sundry – (bit dramatic, I’ve obviously been watching too many gory movies).

Anyway, the angiogram showed that I do indeed require a further procedure called a stent which will be carried out in yet ANOTHER four to six weeks! When it’s done, using a similar technique to the aforementioned angiogram, I should have a lot more puff and will be much better able to withstand the rigours of the next phase of the cancer treatment, but more importantly I hope to be able to be much more active and get out walking around my home valley go on holiday, maybe caravanning? (Karl, enough! I’ve told you once)

All of this has concentrated my mind on TIME. I’ve decided to finally retire from work and spend more quality time with Jane and the family. My days as a fashion photographer are over and I’ve enjoyed them immensely, but in fairness the job has expanded so much that one photographer would never cope with the enormous increase in workload or the continual ramping-up of quality imagery and technique that international online retail now demands. The company is now moving to the next level in their dramatic growth with some exciting new concepts being put in place for the future. I’m pleased to have played my part in their success, but equally pleased to relinquish my responsibility and R-E-L-A-X a little.

The good news on the 14th July, was that the results of the CT scan I had a month back showed virtually no change in the cancer which remains indolent. This means that my consultant, Prof. Radford, sees no reason to commence any procedure and has signed me off for another couple of months. So here I am today, sitting in the dappled shade of my garden on a glorious day with a cold beer, the singing of the birds to the gentle babbling of the stream as it meanders around my garden and pondering that eternal question, why does running water always make you want a pee?

I’ll end here with that thought. Many, many thanks to the dozens of you who replied to my first ‘Topic’ and the kind thoughts and humour they contained. I’m doing OK, having just returned from the stunning wedding at our old friends Ron and Gayle’s, when their daughter Anna was married in south-west Wales. This was the highlight of a delightful long weekend with Jane, when even the weather cooperated to make everything perfect.

#1 – It’s about me…

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…