Another 365er completes her 365challenge ...

On Sunday, January 23rd 2011, 3 days ahead of her target finish date of January 26th, Australia Day, another of our 365ers has completed her 365challenge successfully.

Heather Kelly, an Aussie living here in Chester, England, contacted me just over a year ago to find out how she could take on a 365challenge to support Cancer Research UK. We kicked around a few ideas, and then Heather came back to me with her final plan. And I was stunned at its ambition!

She wanted to create something that helped connect her with her homeland, so … quite simply … she decided she was going to walk from her hometown of Geelong, just outside Melbourne on the south coast to Australia’s northern-most point at Cape York in Queensland … just 3000 miles along the east coast of this enormous country! That’s an average of 8 MILES A DAY! She told me she loved to walk and usually walked at least 4 miles most days anyway, but this was going to need a bit more of an effort on her part.

And you know what? She’s ploughed through the miles, in all weathers, and on Sunday, I was honoured to be asked to join her and a few friends for her final few miles. We successfully negotiated the river, canal and cycleways around Chester on a mild January afternoon to cross that incredible finish line … 3000 miles walked in ONE YEAR, raising, so far, £1130 for the wonderful work of Cancer Research UK (you can add to that total if you want to … click through here to her JustGiving page to donate)

We then adjourned to The Ship Inn in Handbridge in Chester for a celebratory tipple to acknowledge Heather’s wonderful effort.

Congratulations, Heather, that is an amazing achievement and you’ve done the 365challenge proud. Thanks for being willing to take it on and now … put your feet up for a few days and have a well-earned rest … before you set your sights once more on this year’s SHINE night marathon walk for CRUK in Manchester May 1st! What a trooper 

It woz the radiotherapy wot done it!

As if the past 6 months haven't been hard enough on Donna (Mrs 365er) and I, just as you think you are out of the woods, cancer takes a parting shot, just to make sure that you don't fall into the trap of taking it for granted. It can be a cruel beast, that's for sure.

I'd come through my chemotherapy and been given the wonderful news that my Hodgkins lymphoma was in "complete remission. But my consultant just wanted to make sure ... it being best practice and all, he arranged for me the special treat of 3 weeks of radiotherapy, just to make sure that we'd killed off the little nasties once and for all.

Now radiotherapy isn't exactly a walk in the park. For one thing, a 3 week course means just that, 3 weeks, Monday to Friday, 15 days, of traveling up the M53 motorway to the Clatterbridge Centre for Oncology on the Wirral to be zapped by a powerful ray gun that leaves your skin looking like you've got extreme sunburn.

It starts with you getting fitted with a partial body mould. In my case, the mould was from just below my nose to halfway down my chest. Then, they use this to pin you onto the treatment bed every time. This ensures that you don't move during treatment, which is very carefully targeted at a very specific area identified in scans as Ground Zero for the lymphoma. Once on the treatment bed, I would get subjected to two powerful blasts of this radiotherapy ray gun, treating the right hand side of my neck from the front and the back.

The result: what the staff call the "Clatterbridge tan" - pretty serious sunburn, but just to that defined area of my neck. To say that it felt pretty hot and uncomfortable is putting it mildly, and I was slathering on aqueous creams 3 or 4 times a day to ease the burn and swigging their special mouthwash to ease the mouth ulcers that were trying to take hold. And once treatment is over, that's not the end of it, as you keep "cooking" for a few more weeks, and even now, 10 days post my final zapping, that side of my neck is still warm to the touch.

But there's more! Because I was having the radiotherapy to my neck, I wasn't allowed to wet shave, because if I nicked myself, they couldn't give me treatment to an open wound. I decided therefore to let my beard grow out, rather than get an electric razor for just a few weeks. Of course, once I'd decided on that course of action, they then told me that I would have to refrain from shaving the right side of my neck and face for several weeks after treatment finished, as the skin would still be fragile. Fair enough, I thought, I haven't had a full beard for 25 years, let's give it another run and see how it goes. And full beard it quickly became, a multicoloured entity, stretching from my cheekbones to my Adam's apple. So far, so good.

But then, a couple of days before my final radiotherapy treatment, I noticed a small bare patch appear on my chin. By the end of that day ... the patch had grown. It stretched from my mouth across to my ear, down across my jaw and clear across the right side of my throat. Gone. Leaving a patch smooth as the proverbial baby's bottom (and just as red!). That afternoon, a six-year-old client verbalised what everyone else had been wondering: "Mum, why has Colin only got half a beard?" Something had to be done, not least because Donna and I were heading out to an expensive restaurant the next evening with friends to celebrate the end of my treatment and my "complete remission" - I couldn't go out with only half a beard now, could I?

And so, cancer made it's final assault on me, attacking my dignity one last time. Readers, if you are of a nervous disposition, click away now, for below, I present pictorial evidence of the devastation this condition has wrought. It is a cruel and harsh disease, but I have fought it twice now, and defeated it twice. Though it has thrown one final assault my way, I have responded in the only way I know how: head on, kicking back hard, taking positive action. As if it wasn't bad enough, given that the radiotherapy has left my skin ultra-sensitive to the sun, I have had to take steps to protect myself further when I leave the safety of my home, and though this has added further to the indignity that this condition has tried to reign down on me, I have not allowed it to gain an inch ... I have stepped proudly out of my house with my head held high.

Though people have begun to stare ...

And my outdoor guise ... it gives me something of an edge, don't you think ... just hand me a guitar, call me Waylon and stand back, 'mam ...

I have to confess ... I think I'm starting to like it :D

Getting back to the everyday ...

It really is quite hard to get my head around what has happened this year sometimes. It was the middle of February when Donna and I noticed a lump on the side of my neck. It wasn't large, it just wasn't something that should have been there. The next day, I saw my GP, Andrew, who poked and prodded, and muttered that he couldn't say what it was but given my history, we'd better get it checked out (I think he knew, actually, but he was probably right not to expand on his suspicions at that point).

A week later, I saw the ENT consultant, who arranged a biopsy and this confirmed that I had Hodgkin's Lymphoma (Stage 1a, very early in it's development, thankfully), and I was then bounced to the oncology consultant, Dr Tueger, who then took charge. Well, he'd probably sayhe did, but his specialist nurses did, really (*GRINS*), and just over a month after investigations had begun, I started ABVD chemotherapy on March 31st.

I'd kept working up to that point, trying to tie things up with cases and clear my desk for what I originally told people would be "a month off while I reviewed how I coped with chemo" (oh, I am such an optimist, did you know that?). Though I had good weeks when I still felt well over the three month course of chemo (and even kept running on the good days), the chemo regularly wiped me out for 7 or 8 days at a time, so returning to work justdidn't come into the picture at all.

It was hugely frustrating, as anyone who knows me will know that I don't like "not doing". I always seem to have something I'm working on or planning - I'm not on-the-go all the time, and I can veg on the couch with the best of them, but I always have some project or other bubbling under. And during this period, it was really difficult to motivate myself for days on end to do very much at all (other than watch the World Cup, which, conveniently filled the latter part of my treatment cycle).

And when the chemo ended, on June 16th, that still wasn't it, because it took about another 2 - 3 weeks for the main effects to wear off. Then, on July 7th, I met with Dr Tueger to be told that I was in complete remission. So, in just under five months, I went from finding a lump on my neck to the bleakness of a second cancer diagnosis, through the trials and tribulations of the treatment, to being in complete remission!

Head-spinning, really, don't you think? I mean, just how great is modern medicine, and how brilliant a service is the NHS when you stop and think about it? I have to stop and pinch myself sometimes as I try to make sense of what's happened over these past few months. The relief we (Mrs 365er and I) feel is huge, obviously. While I am still having radiotherapy (another 2 weeks of this needed, just to be sure, you know), the reality is that the cancer is gone, history, just another story to tell - how amazing is that!

Now, it's time to get my life back on track. I started back to work again in the middle of July (almost three months after I'd optimistically expected i would!), but I am determined to move a little slower than maybe I have in the past; taking things easier and saying "no" to things more often that I have done in the past. I know the work will come in, so I don't really need to panic, the bank balance will grow again in time, and I'm sure that before too long, I'll be back in the swing of things on that front. Soon, it'll be the old routine again, and I have to say, I'm kind of looking forward to that.

As for my 2nd 365challenge, well, having over four months "out", with very limited running has really put paid to me completing the challenge of running 36.2 marathon distances in a year, but I haven't completely given up on it. I have been trying to get back to running - it's been VERY hard this last couple of weeks, maybe the radiotherapy has something to do with that! - but as I build up again over the coming weeks, I plan to continue with my effort and just keep going until I've hit my target miles. It may take me 18 months instead of 12, but I will complete it.

And while I'm doing that, I'll continue to support any 365ers who come on board to join me in raising as much as we can for the fantastic work of Cancer Research UK. I know that if they were not out there funding research and developments in cancer care, these last few months might have been very different for me, so if I can raise more money that ultimately means other people's experiences of cancer prove as positive as my own, then that's what I'll keep doing. Care to join me anyone? Anytime ...? 

Another breathe-holding moment ...

Wednesday morning (July 7th) was PET Scan results morning for me and Donna (Mrs 365er). It was also, poignantly, the 2nd anniversary of losing my big sis and the inspiration for the 365challenge, Brenda, to breast cancer.

Having completed my chemo on June 16th, after a couple of false starts, I had my (almost) full body PET scan (a highly detailed exploration of my innards) on June 30th at the Clatterbridge Oncology Unit. Quite a lengthy process, involving injection of radioactive tracers (nice), then about 40 minutes in the scanner as it moved up and down my body, taking the pictures that would tell us if the chemo had worked and I was clear of cancer again!

As is always the way, once the scan was done, there was another wait until I could meet with Dr Tueger, my oncologist, and get the results ... and that wait came to an end this morning ...

There we sat, anxiously, as he asked a number of symptom-related questions (which I answered all in the negative, which was good) and then he gave me a quick physical before he got round to remembering why we were there again, and uttered the glorious words ... "there was no sign of the lymphoma in your PET scan; you are in COMPLETE REMISSION, the lymphoma is completely gone!!"

Big release of breathe again, hand squeezing with Donna (the hugs came later!), as the relief swept over us both. This is what we came to hear, and it was wonderful ... Colin 2 - Cancer 0, eh?

But there was a "but ..."

Dr Teuger went on to say that the scan showed a slightly raised uptake of the sugars they inject in the PET scan around the prostate, but he reassured us that it was very slight and the radiologist had suggested that he has seen this before and it wasn't anything significant to worry about ... but, to be sure, to be sure, he was going to have me see the Urologist for an opinion. He had already asked me a number of questions about my "waterworks" and as these have been completely normal all along, he seemed happy enough that all is well in the world, so the urology check-up is just about crossing the Ts, really (or should that read "crossing the Ps"). It did take a little of the shine off the main news, but as we left, we just kept reminding ourselves of those words "complete remission" ... they sound damn good to me!

Donna and I want to say a truly heartfelt thank you to all of you out there who have provided such great support to us both through these last few months - knowing you're all out there routing for us has been a great boost, so thank you again. But keep it coming too, 'cos it's great to know you're behind us still.

HAIR UPDATE

I thought I'd better bring you up-to-date on the hair situation, as so many of you have "invested" in it. I'm now three weeks post-chemo, and I have to say that the hair thinned dramatically in the days after it all ended. I had what I call a chemo hairstyle - thin patches on the side of my head, etc., so I decided to have it all taken off. But my hairdresser wouldn't do it for me - she insisted on only cropping it short, and to tell you the truth, it didn't look too bad. Certainly very thin on top, very much like my Dad now, but I am told it WILL grow back. Here's a photo as evidence ...

So, who got it right in the Hair Stakes betting? Well, it's not actually gone, but it did try very hard to go, so I reckon it's sort of somewhere between the "Lose it After Session 6" voters, Katie Balling and John & Isabel McCormick, and the "Not at All" crew, made up of Chris Alderton, Dave Dean, Nancy Scott, Angela Brennan, Simon Painter, Melanie Peake, Susan Jones, Janette Reilly and all at Stanley Staff, Frances Vaughan, Jennifer Liston-Smith, Fiona Pender and, last but never least, Huw Williams (such optimists, all of 'em!).

Thanks to everyone for the support you've given me on this. It was a lot of fun and really did help take the sting out of the experience!

That's it for now, but don't forget, if you find a lump ... please have it checked out: you know it makes sense!

Cheers

Colin

Chemotherapy: DONE!

On Wednesday, June 16th, I completed the mini-marathon that is Chemotherapy treatment, with my 6th and final session of ABVD at the Countess of Chester Oncology Suite. I have to say a huge thank you to all of the girls over there - I'm sure they'll appreciate the term (honest, I KNOW they will) - for their wonderful care and support across these past three months of treatment. Their sense of humour coupled with a truly practical approach to the business of cancer made a massive difference to me in how I came through this - and I hope I gave them a few laughs along the way too :D.

Also on Wednesday, I had a meeting with my oncologist, Dr Tueger, who, after a physical examination, declared that he could find no trace of any lumps, adding "we're all good here!" 

Gulp! 

Okay, so I know there is still a PET scan needed to confirm this, and a course of radiotherapy to "mop up any lingering nasties", but it looks like we're close to being able to declare a winner in this battle - and it ain't gonna be Hodgkin's lymphoma. Hah, take THAT!

There is a palpable feeling of relief in our house, as you might imagine, though coupled with a lingering "it's still not finally confirmed" caution, but it really is looking very good from where I'm sitting :D

Flame of Hope Awards

And what a way to celebrate finishing chemotherapy! On Friday June 18th, Mrs 365er and I hopped on a train down to "that there London" to the Russell Hotel for the Cancer Research UK "Flame of Hope" Awards. These are nominated for by the CRUK staff and acknowledge the efforts of the many amazing fund-raisers out there doing their thing to support this wonderful charity (thank you, David, for thinking I deserved to be in the mix). 


And wouldn't you know it, your very own 365challenge has only gone and won a Special Commendation in the "Fundraising through Sport" category (!), so I am looking forward to having  the pleasure of collecting my award from none other than the Chairman of CRUK, David Newbigging, OBE. 

Have to say that I'm just a bit pleased at this - and I hope it helps push the 365challenge forward in the eyes of CRUK as I continue to try to negotiate a higher profile for it in their fundraising activities in general.

Now then, when do we get to go to the palace ... :)

5 down ...

The penultimate chemotherapy session: DONE!

So Wednesday saw me at my current second home, the Countess of Chester Hospital, for the fifth of my six chemo sessions. It's hard to believe that I'm just one session away from completing this course. Do I get a certificate for being a good patient? But what, I hear you ask, does it all entail?

Well, it's a very long day, having chemotherapy treatment. The hospital is just a 15 minute walk away, fortunately, but I've noticed the last couple of times that as I approach it, there has been something of a feeling of dread sitting in my stomach. More poison coming into my body ... however, it IS for a reason AND it does seem to be doing it's job. but it still sits heavily with me. I guess also there is some trepidation that my white blood count won't be good enough to allow me to go ahead with the treatment that day, and I'll be sent home, to come again another day, and so have even longer to go before this thing ends.

But I go in and take my place in the waiting area to be called to be weighed (so they can match my drug dosage to my size), then, with the form in hand, announcing that I've not exactly faded away over the past fortnight, I wander down to the treatment suite and select my chemo chair for the day. Because it does tend to take ALL day.

First, there is the game of "Where'll we stick the Cannula today?" Sometimes this is a direct hit, but three, four and five goes are not unheard of (ouch!). Then there is the interminable wait for the blood test results to come back, which determine whether or not the treatment can go ahead.

Actually, after speaking to my consultant the other week, as he seems quite pleased that I've been so healthy throughout the treatment, he is no longer particularly worried about my white blood cell count, and he's just going to plough on with the treatment, which is fine with me!

Then, once the treatment can begin, there are six different, shall we say, "infusions" to be administered that these can take three to four hours sometimes. So by the time the last saline flush has gone through and they release me from my chair, am I ready for home ... well, yes, if you must know!

The end in sight ... well, sort of ...

But with 5 treatments down, it feels so good to have the end of the treatment in sight. Or is it? Well, yes and no. Because after the chemo comes, guess what? The radiotherapy, of course! It's a case of "belt and braces" here ... the plan is to hit the Hodgkin's lymphoma hard with the chemo, then follow that up with what looks like being a three week course of radiotherapy, just to be sure (to be sure!). But once all that is done, then so will I be ... well and truly, I suspect. No, really, once all that is done, I'll be chomping on the bit to get back out there and resuming my 365challenge again. And that day is getting closer all the time *GRINS*

Wish me luck!

2/3rd of the way through chemo ... and still running (well, just a bit!)

On Wednesday, May 19th, I completed my 4th session of chemotherapy, which completed my 2nd cycle (2 sessions per cycle), leaving just one more cycle to go (hooray!). As long as I can have the treatments as scheduled, on June 2nd and 16th, I'll be done this part of my treatment! After that, I'll have a scan to see if there are any nasties lurking, and depending on the outcome of that scan, I may or may not need further chemo or possibly radiotherapy ... so there is a real chance that all of this will be done and dusted by the end of the summer ... here's hoping, eh?

I've found the chemo generally to have gone well. There is a pattern to the effects. For a couple of days afterwards, I'm fine, then by the end of day 2 post-treatment, my energy levels begin to flag. Mornings seem okay-ish, but by lunchtime, I can feel like a wrung-out cloth, and just need to sleep, which I do for a couple of hours usually. This weariness lasts for about 7 days, and then I start to gradually feel I can do things again, usually for about 5 days before I have to go for my next treatment, when the cycle starts all over again. 

I've mostly been fortunate not to suffer from nausea following the treatment, though on this last treatment, when I had only my second (once monthly) dose of Pentamine, which is given with an inhaler in an isolated room as it is so toxic, I really struggled. Pentamine was prescribed for me as my neutrophils (key white blood cells, vital for fighting infection) had dropped significantly following chemo, possibly in part due to some tablets I'd been prescribed as part of the treatment. The Pentamine was prescribed instead of the tablets and seemed to work, but this time ... uh-uh! It was a real struggle inhaling it, I felt nauseous after just a few puffs, but persevered with it for about 10 minutes, on and off, until I couldn't take any more. I left the room and spoke to one of the nurses, who spoke to the consultant, who said "STOP!" Got about half of the dose in, so we'll have to see if it worked, but I walked home from the hospital yesterday pretty shaken by that one. Hopefully I won't have to have it again, as it is only monthly and by the time it is next due, I'll have completed my final chemo cycle. Fingers crossed.

The other promising news about the treatment, however, is that when I saw the Senior House Officer a couple of weeks ago, he gave my neck a thorough physical examination and announced that he couldn't find any evidence of the lump that started this whole episode! So that was great news ... clearly the chemo has broken up the nasty little bugger, but we'll have to wait for the scan to see if it has killed it off completely ... here's hoping.

On to other things now ... while clearly, I'm not my super-fit self any longer what with being put through the wringer every fortnight, when I DO find I have some energy, I have been able to get a few runs in still, adding just a few more miles to my 365challenge total. Yesterday, Thursday morning, the day after my last chemo, I managed a 3.5 mile run, but my total for April and May to date is only about 32 miles, so I suspect I'll have to extend my challenge this time ... I hope you can all understand why ... :)

As for the "will he or won't he lose his hair" bet scam ... well, I'm delighted to tell you that so far, 4 treatments in, I still have a full head of hair (see last blog post for photo evidence - hope its not too shocking for you all). Even better though, is the fact that this little ruse has raised a whopping £935 so far to add to my personal 365challenge pot! Now, I'm just £134.45 short of hitting the £10K mark, which would be quite a milestone. If you'd like to help make that happen, please visit http://www.justgiving.com/365challenge or go and read that "hair challenge" blog first for a laugh!

Overall, the 365challenge has now raised over £30K for Cancer Research UK, and there is more to come ... further announcements soon, I hope. As part of further promotions for the 365challenge, I've recorded a series of videos that you can watch on YouTube anytime. I'd love to hear what you think, so when you have a moment, maybe you'll pop along and have a look - if you click on the "3 videos" tag just below the title on that page, you'll see the other videos in the series ...  there are some other 365 videos listed down the side of the page, however, that are NOTHING TO DO with my effort, so please don't worry about them!

Well ... I'll stop there, I think ... there is more, but I'll save that for the next time. Feel free to send thoughts, questions or comments, as I love to hear what people think about these adventures of mine! 'Til next time ... stay well, and please, if you find a lump ... get it checked out. Believe me, early treatment can make ALL the difference.

Cheers for now

Colin