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

chemo is taking it's toll ... but not on all fronts!

I've been a little quiet on here recently. I guess I've been finding the chemotherapy treatment pretty knackering, really, and this has spread into my ability to attend to my blogging duties!

I've had 3 (of 6) chemo treatments so far, with the next one due tomorrow (Wednesday May 19th), and I think I've fallen into a familiar pattern. For a couple of days post-chemo, I'm okay, but then the weariness starts to hit, and I'm pretty shattered for about a week or maybe a little more. Then my energy levels start to creep back up, just in time for my next fortnightly dose of chemo ... and the cycle starts all over again.

After session 2, I was really floored and didn't run at all during that fortnight, but since my last treatment, I've managed 3 runs, getting around 3 miles in each time, which I've been really pleased with. If I can keep that up, at least when all this is over, I won't be starting back into my running totally from scratch.

And I really do want to get back running again properly when this is all over. I went along to watch the Chester Half Marathon on Sunday - which I should have been taking part in - and just felt that I wanted to be a part of all this once again ... roll on July/August, when treatment should be complete and hopefully, I'll feel normal again and my fitness can get back to where it was just 6 weeks ago.

And just for the record, as I await session 4, I'm pleased to report that I'm still hanging on to my hair! So thank you once again to all you folks out there who have contributed to my "bet on my hair loss" fund-raising effort, which has raised £850 or so to date, helping bring the 365challenge total to over £30K raised for Cancer Research UK, and I hope that those of you who bet my hair would be gone by now aren't going to feel too short-changed!

"call to arms" for Cancer Research UK and the 365challenge

I've been in discussions recently with a small but hopefully growing gym group who are looking at adopting the 365challenge for Cancer Research UK (CRUK), and if that happens, then there is a real possibility that the 365challenge could take off quite significantly, which has been my goal all along, as this could see a huge boost in funds coming in to support the charity. 


In discussions with the MD of the company (details of who they might be later, as things get finalised ... be patient *GRINS*), he asked me if I'd be able to make a video to explain the 365challenge concept to his staff and potential 365ers - a sort of "call to arms" to people out there to take it on and do something amazing for Cancer Research UK. 


"Of course", I said ... and then began to wonder how to go about it! I borrowed a friend's video camera, but couldn't quite get the look and sound I wanted, so thought I'd mucked it up.  However, then I thought I should have a look at the capabilities of my new MacBook Pro, given that Apple are said to be the tool of the creatives of this world. And what do you know ... this beautiful machine had most of what I needed as part of the free software already installed.  


I used the Photo Booth video facility to make the recording, using a programme I'd downloaded for free, called Prompt, to create a tele-prompter into which I pasted my "script", so that I could read it off screen as I went along. It worked pretty well, but I do think I'll need a little more practice before I can expect calls to take over from my local newsreaders :) 


I then posted the resulting video to iPhoto, opened iMovie and imported the basic video into this, where, by trial and error, I learned a little about the process of editing, to create the 7 minute video that I've posted below.  


I'm planning several more, including a shorter, bullet-point 2 minute version, but if you have a moment, have a look and let me know what you think of my efforts. Anything you'd change or have i got it just about right? All comments welcome.

running through chemo ...

When I started out on my chemotherapy treatment for my Hodgkins lymphoma, I spoke to my cancer nurse about whether or not I would be able to keep running while I was going through the 3-4 months of treatment. I was pleased when she told me that she couldn't see why not, though warned that I would feel tired at times, and I should really listen to my body rather than trying to blindly stick to an inflexible running programme. 

Immediately after my first session of ABVD chemotherapy on March 31st, I actually felt great, so the next day, I was out on the road for a 3.6 mile run, feeling strong and wondering what all the fuss was about! And then, it hit me! By April 3rd, I was basically knackered! I felt as if someone had flicked a switch and turned the power off, or that my engine had run out of gas. Mornings were okay-ish, but by lunchtime, I was drained, and needed to sleep for an hour or two. And any thoughts of running were totally out the door - I remember watching a runner dodge past pedestrians on the street one day, and wondering how on earth anyone could do something THAT energetic!

The weariness lasted about a week, and gradually, I began to feel half-energetic again. So by April 11th, I felt able to try a gentle jog of a couple of miles. That went okay, so I tried 3.5 miles on the 13th, just before I was due my next chemo on the 14th. I thought that that would be the pattern ahead of me: limited energy, and grabbing a couple of miles here and there when I felt I could. Not exactly what I'd hoped for, but in the circumstances, the best I think I could have expected. However, because my white blood cell count (in particular my neutrophils, which are the main infection fighters in my blood) was still low from my first treatment, my 2nd chemo treatment was postponed for six days, and in the interim, my energy levels recovered even more, so I managed another 3.5 miles on the 16th. 

Then this morning, the 18th, it being my birthday, I thought I'd make a bit of an effort and have a longer run. I mean, it's only three weeks since I ran the Wilmslow Half Marathon (three days before my chemo started), so I knew I had to have some sort of residual fitness still (didn't I?). So off I set, at around 7.30 (I'm a very sad early riser: I'd already walked the dog before this, so had kind of warmed up a little too). I wanted to do at least a 10K/6 mile run, and so I took a lovely route that took in part of a local cycle way that runs out into the surrounding countryside. I was running into the rising sun, with blue skies overhead, and mist burning off the land ahead of me as I ran. The sun itself was a wonderful burnt orange as it climbed into the sky, probably thanks at least in part to the Icelandic volcanic ash in the atmosphere. It was all truly magical, and the sense of wonder was added to by a heron, which glided alongside me at one point, landing majestically by a small pond ahead, then stretching it's neck, opening it's wings and slowly taking flight again, sailing low across the fields into the mists. 

With this to distract me, running couldn't have come easier at that point, and I found myself stepping out along the track feeling very comfortable and strong. The run back home from the turn was not quite effortless, but it felt good, and I completed 6.6 miles in 59 minutes, averaging 8.59 minutes per mile (data courtesy of RunKeeper Pro on my iPhone *GRINS*), a speed slightly faster than my usual pace, so all in all, it was a run that I was extremely pleased with.

I now face my next chemo on April 20th, white blood count/neutrophils permitting, so if it goes ahead (fingers crossed), I guess I can look forward to a similar pattern of energy/weariness ahead. If the interim blood count is low again in a week's time, I guess the cycle may come to stretch to every three instead of every two weeks, and maybe my "running through chemo" will increase in that third week again. But, while I am enjoying being able to get out there once again and pound the pavements, in all honesty, I think I'd settle for less running for a while if I could just get through this chemotherapy treatment sooner rather than later. But hey, all that appears to be out of my control ... my body will do what it needs to get me through this, I'm sure, and the treatment will take as long as it needs to take. All that really matters is that, at the end of it all, I get the all clear, which is what is expected ... and when that happens, I'll probably celebrate with a glass of something ... after I've been for a run! :D

mmm, a mixed response to my ABVD chemo ...

Last Thursday, the day after my 1st chemo treatment, I woke up feeling great! So good, in fact, that I headed off to the gym and went out from there for a 30-odd minute run. I felt fine through it, and even contemplated extending the route an extra mile or three, but good sense (not something I'm always noted for) took over, and I kept it short. 

Felt good throughout the rest of the day, and woke the next feeling similarly good. Tempted to run again, but once more, this strange common sense-thingy took hold of me, and I decided not to push things just yet. But I did find myself wondering, hopefully, if maybe I might get through this experience relatively unscathed. 

Still good on Saturday morning (C-day +3), and so headed off to meet friends, Mel and Stu, and go to the Chester Food and Drink Festival at the Chester Race Course. This is an annual event and something Donna and I really enjoy: lots of food stalls, samples, and cookery demonstrations, good fun all round. Of course, this year, I wasn't able to try any of the samples as I have to watch what I eat, but I could still enjoy seeing what was on offer and buying various things to have later at home, once we'd cooked them. One highlight is usually the hog roast lunch, but that was out of bounds for me too (not allowed any takeaway-type foods or food from deli counters for the duration of the treatment; possibility of picking up germs, which under normal circumstances, I could cope with, but with depleted white blood cells, my resistance to possible infection is lowered). Donna had some though (I wasn't going to deny her that, now come on!), but insisted that it wasn't very nice at all :-P! 

However, the day out (well, several hours anyway), and possibly the crowds, began to take their toll, and I was feeling quite shattered as we made our way home. Later that evening, I also noticed a niggling sore throat starting. Checked my temperature, and it was okay at 36.2C, but took a couple of precautionary hot Lemsip drinks through the rest of the day. This seemed to work, as I woke Easter Sunday morning with my throat feeling fine. It was a lovely morning, so I took the opportunity to mow the lawn - the first cut of the year, folks, I know, how could I? - but I felt I had the energy for it, and, following on from the advice of Nurse Dee, I was listening to my body and doing what I felt able to.

But since then, I have been noticeably more tired, and have concluded that I need to go a little bit more slowly about things. This morning, after a broken nights' sleep, I am knackered. I really felt quite queasy at about 3.00 am and thought perhaps the nausea that is threatened to come with this treatment sometimes was going to hit good and proper, but a quick couple of tablets to counteract this (Domperidone ROCK!) saved the day/night.

This morning, Easter Monday, I reckon I'm going to have a very slow day ... no nonsense, no "maybe just a little ...", I'm officially resting today. For once, as so many tweets and Facebook messages have suggested to me over the past couple of days, maybe I CAN be sensible ... :)

And so it begins ...

Wednesday March 31st 2010: the day I started my chemo. Quite a momentous happening, if you're sitting where I am, but just another day at the coalface for everyone else, I suppose. 

Donna (Mrs 365er) and I arrived at the unit at 8.50 am for a 9.00 start (oh, little did we know). I have to admit to feeling some trepidation about what might lie ahead for me. The thought of having serious drugs pumped into me, with a wide range of potential side effects likely, was not something I was looking forward to. I'm one of those generally lucky people who rarely gets sick (I save myself for a couple of bouts of cancer, none of this namby-pamby man-flu rubbish *GRINS*), so offering myself up to a treatment that is likely to make me feel ill when I've had no symptoms at all seems really odd, and not something I'm particularly looking forward to (who would?), but this is what has to be faced, I guess.

So the process is, it turns out, a long and slow one. After being weighed (so they can calculate how much of each drug I'll need), we were called through to the chemo suite at around 9.30. This is a large room with about large 12 adjustable chairs spread around the walls, each with a drip stand set up beside it. A few of the chairs were already occupied, and I was invited to choose where I wanted to sit and make myself comfortable. Donna initially perched on the side of the chair with me, but then one of the nurses, Sam, located a spare visitor's chair for her. And then we settled in for "the wait". 

After a while, Nurse Sam came over and put a cannula into my arm and took a couple of blood samples. She explained that as it was my first visit, I had to wait for Nurse Dee (see previous post) to sort out my consent to treatment, and she'd be through to see me "in a while". 

The other chairs gradually filled up over the next hour, and everyone had their cannulas inserted and bloods taken. Some of the people there ahead of me seemed to be having blood transfusions, while others were just waiting, like us. It gradually dawned on us that most of the group were not yet receiving their medication and we realised that everyone was waiting for the blood sample results to come back. These determine the individual's white blood cell count, as best I can work out, and this result will determine whether or not the patient can have treatment that day or not. The labs were running late today, so there was a LOT of waiting to be done by everyone. It was also very disheartening to see about three people being told that their blood count was too low today, so they couldn't have treatment and would have to come back another day (and if it felt like that for me, I can't imagine how it felt for the people this happened to)!

After about another hour, Dr Lee, the main consultant, came to see me and have a chat, as we'd not met before. He again explained the nature of my Hodgkins, and what the treatment would involve. Nurse Dee began sorting out my consent, and she got Dr Lee to write the full diagnosis into my notes, as this hadn't been possible before the second opinion had been received last week, and without the detail specified in my notes, my treatment couldn't start.

More waiting required, and I was getting a little frustrated until I realised that many of the others were waiting too. It seems this treatment-lark is going to need me to learn patience, something I can show with others usually, but am not always good at for myself :). 12.00 came and went, and with it, a very mediocre hospital lunch. Donna and I just sat there chatting and waiting, just wondering what was going to happen and when, and just when I might actually get out of here today?

Finally, Nurse Sam came over with my meds - the four drugs that make up ABVD: Doxorubicin, which was originally called Adriamycin®; Bleomycin; Vinblastine, and Dacarbazine. She explained that she would inject the first two slowly into my cannula, and then the last two would be given via the drip. And so, at about 1.15 pm, we were off. 

Sam chatted away with me as she gave me the first couple of drugs over about a 20 minute period, very gently and slowly pushing the drugs into me. She also gave me some anti-sickness medication via this method as well as a small steroid dose which helps counteract the effects of one of the drugs on the lungs. Once this was done, she hung the Vinblastine and started the drip, leaving me while this ran through. At about this stage, we decided that there really was no point in Donna staying much longer, so she went off home, taking my take-home meds (a range of tablets I would have to take over the coming weeks between treatments) with her, with me promising to call her when I was done. 

Finally it came time for the Dacarbazine. Sam explained that this drug was light sensitive, so they had to hang it in a special bag. She also told me that many people find having this drug a very uncomfortable experience, as they often report pain in their arm. This can be counteracted by putting something warm on the arm and/or slowing the speed of the drip right down - delivery of the drug therefore could take anywhere from 40 minutes to a couple of hours, but as everyone is different, and it was going to have to be "try it and see what happens", though she added that as I seemed to have good, large veins, this could help as the relative volume of drug to blood in the veins would be less. 

This was the drug I'd been most anxious about, as I'd heard about the potential problems, and I'd seen one of the other patients (a big strapping guy across the room) really struggle with it, in obvious discomfort. So when Sam started the drip off, and I felt nothing unusual, that was really positive. She decided to set the drip feed to its fastest setting, telling me that if I noticed any discomfort, I should tell any nurse and they would adjust it for me. And then she went to lunch, telling me she'd check back with me on her return! 

After a few minutes, one of the other nurses checked I was still okay, which I was. It had been a long day up to this, and much to my surprise (and delight), I then drifted off to sleep, waking only to the bleep of the monitor on the drip that announced that the Dacarbazine was finished! 40 minutes, on the nose! No discomfort, no itching, RESULT! Another nurse came and disconnected me, removed my cannula and sent me on my way ... home. As I passed through the outpatients section, I found Nurse Sam doing some paperwork. She was amazed to see me, saying that she had been just about to come through to see  how far along I was. She checked I was feeling okay (I was) and I was done.

I was feeling quite good, actually, especially after my snooze, so I called Donna and told her I'd walk home (it's only about 10 minutes away). It was great to be out in the fresh air, and so good to have started on this treatment, just seven weeks to the day since I'd gone to my GP to have him look at the lump on my neck. Things feel like they are moving forward positively now; one treatment down, just five to go. Here's hoping they all run as relatively smoothly as this did.

will he or won't he? well, okay, he WILL, but WHEN? ...

Okay, I'm not going to harp on about my diagnosis and treatment (or maybe I will, 'cos, now that I think about it, without harping on, there probably wouldn't be much of a blog here *GRINS*), but the thing is, I am due to start on my chemotherapy treatment on Wednesday March 31st (had I mentioned that before?).

And, as we all know, chemo pretty much nearly always results in hair loss for the lucky(!) recipient, amongst other fun side effects, more on which I am sure I'll blog as time goes on. But this blog is about hair loss.

Now, I'm sure that my brother won't mind (too much) me saying here that, well, of the two of us, I've been the one to hold onto my hair better, and, while it's not really a big thing for me, keeping my hair has been something I've been quietly pleased about over the years. My Dad started losing his hair in his early twenties, so as I drift towards my 49th birthday (no, honestly, I can't believe it either!), having maintained a thatch on top was something I had kind of become used to. I don't go to any extraordinary  lengths to look after it, for all that, but it's been a constant and you kind of expect it to still be there when you look in the mirror each morning.

But there is a very strong probability that, at some point over the coming months, it won't be!

I've accepted that, and I know that once all the treatment is over, it is likely to come back, but I'm not going to get too upset about it. It is just one of those things, and to tell you the truth, I'll take hair loss if it means that this cancer-thingy in me gets gone in the process! But, as those of you who've been following my story over the past couple of years know, I'm in the business of fundraising for Cancer Research UK (CRUK) too, through my 365challenge (hence my id: 365er). If you're new and haven't come across this part of my story, click through here for more details: 365CHALLENGE. The 365challenge has been a great success. Personally, my fundraising is not that far short of £9000, and as a group (there are at present around 12 365ers around the country), we've raised over £28K for CRUK so far. But we can do better, and I am seeing my impending baldness as an opportunity to add to the pot ...

So ... I want to open a book on "When will Colin lose his Hair". Here are the facts as I know them: I am due to have three cycles of chemotherapy, with a drug cocktail called ABVD. Three cycles means six treatments, each approximately two weeks apart, starting on March 31st, and running through to around the end of June, with possibly some radiotherapy to follow. Now, as you can see, I have a full head of hair as of today (now, stop that!), and I promise I won't take any action to remove that until such time as it starts to fall out, at which point I will probably have it all shaved off. For the purposes of this "bet", that will be the point when I will consider that I have "lost" my hair. 

What I'm asking you to do, dear reader, it to place your bets now as to when you think this is going to happen. The choices are: Before Chemo starts (unlikely); After Session 1; After Session 2; After Session 3; After Session 4; After Session 5; After Session 6; During Radiotherapy; Not At All (you optimist, you!). 

I have no idea when it might happen, and nor has my cancer nurse, so it really is about having a bit of fun about my demise, taking a wild guess, and supporting your guess with a contribution to my JustGiving page for my 365challenge for CRUK. Click through here - justgiving.com/365challenge - to lodge your guess/bet (any amount welcome, but JustGiving do have a minimum donation of £2), listing "After Session 1", etc, in the comments section to indicate your choice, and adding your support generally. Now the thing is, there is no prize as such, other than knowing that you correctly guessed when/if I will capitulate to the hair fairies, but I WILL name check everyone who guesses right in a future blog, and if I have your email address, I will contact you personally to allow you to commiserate with me ;). I'll keep you updated too as treatment goes on, so that you can keep track of your success or otherwise in the betting stakes.

Over to you now. C'mon folks, dig deep while I desperately try to resist shedding, and lets see if we can make something positive out of this negative (for me, anyway) and maybe push my total raised over the £9K mark before it all starts to drop out ...

the day nothing (much) happened ...

I'm not sure what to say about today's "non-appointment" with my haematologist. It was billed as the appointment where I'd learn my final diagnosis, where the views of the Professor in Liverpool would have been canvassed, and a final plan of attack on my cancer would be outlined. There is still a little doubt over quite what my cancer is, so the second opinion was being awaited with keen interest: today was going to resolve this and clarify for Donna and me just what to expect.

But ... the second opinion is still not back! Dr Tueger was very apologetic, explaining that the Prof has been away and only got back yesterday, and as she is the go-to second opinion girl for all of the North West of England, my case wasn't necessarily at the top of the pile ... so, despite the fact that Dr Tueger even left the office to call through to see if she'd had a chance to look at my biopsy yet (she hadn't), we're still in a sort of mini-holding pattern for now. 

So the appointment deteriorated into a bit of a farce, with plans being outlined for treatment, then changed, then re-instated. Dr Tueger and his nurse, Dee, seesawed over what should happen next, with me pitching in, saying I was ready to roll on the 31st, and I'd built my schedule around that, including hoping to attend a 3-day workshop in one of the non-treatment weeks in April, so delaying the start of treatment would be inconvenient (I'm not exactly shy about saying my bit with medics, really). 

In the end, we agreed that, for now, we go ahead with the 31st as the target date for starting treatment, with the proviso that should the Prof in Liverpool come back with a different finding to Hodgkin's lymphoma, then this might need re-thinking. So Donna and I slipped off to a side room with Nurse Dee, who explained more about Hodgkin's to us, and about ABVD, the chemo cocktail I expect to become my medicinal tipple-of-choice over the coming months, and its possible side effects. Lots to take in and take away to read, but while the side effects are not to be looked forward to, there do seem to be drugs that can be taken to counteract these, so really it is all about suck-it-and-see to determine just how I respond to the intense poisons that I have to take into my body over the coming months. 

And, me being me, of course one of my questions was about whether or not I would be able keep running through my chemo. I was delighted when Dee told me that as I was running regularly now, there really was no reason why I shouldn't keep going, but that I should listen to my body, and if it said rest for a while, then I should rest for a while! Here's hoping I do, but also that my body will let me keep on running.

Despite the semi-chaos and indecisiveness of the appointment though, I came away quite positive overall and keen to get this treatment up and running ... bring it on. 

Another highlight of today was meeting Nurse Dee. As with Nurse Laura last week, she was a joy to speak to, knowledgeable and sure-footed in her handling of all our questions.  She and Laura are great communicators, with good senses of humour and they instil a great sense of confidence in them and how they will care for me going forward. Now that is a wonderful skill and I look forward to working with them over the coming months. Wish me luck ...

and BREATHE ...

It's amazing just  how stressful "knowing, but not knowing" can be ... waiting for that second shoe to drop, holding yourself ready but unsure what to expect when it does. That's what this last week has been like for Donna (Mrs 365er) and me, though, as I guess is often the case, neither of us really verbalised this fully,  or maybe were even fully aware of just how tense we were feeling, waiting for Thursday's appointment with the nice Mr Haematologist.

You see, we knew I had cancer again. But we didn't know what type it was, how extensive it might be, or what treatment might entail. We had just enough information to be able to worry, and, as is only human, to start imagining the whole gamut of possibilities. And while we spoke a little about our worries, neither of us were able to satisfactorily reassure the other that it would be okay; that it wouldn't be so bad ... because we just didn't know.

I was trying to be upbeat and positive for Donna, hanging on to the "we found it early, and I've got absolutely NO symptoms" mantra, which has certainly been helping me over the past week, but I know that while she wanted to "hear" that, Donna's thoughts, as were mine at times, were running riot with "what ifs". Sleep was possible, but early wakening for both of us has become the norm - for me, that really is the norm, I'm one of those awful morning people, but for Donna, seeing 5.30 am was not welcome. She told me that her sleep was fine, and her dreams were all food-based (courtesy of watching Australian MasterChef on Watch TV, boy, there is a heck of a lot of that to follow ...), but that once she opened her eyes, all she could think about was me and my cancer, and her fears about this - not a nice state to wake up to at all.

So come Wednesday evening, the day before the appointment, I think we were both a lot more tense that either of us were acknowledging. Then the doorbell went, and there was John, one of our neighbours, with a bottle of wine. Handing it to me, he told me it was "to help you sleep tonight". What a lovely gesture ... and how ungrateful of me to then proceed to talk John into coming out to the pub with me later that evening for a couple of St Patrick's Day Guinnesses as an alternative solution to the sleep problem! He fell for it ... and I even got to keep the wine! *GRINS*

But even the power of Guinness wasn't quite enough, and once again, morning came very early on Thursday. As my appointment was for 11 am, I decided to go to the gym and get a few miles running in as a way of distracting me from thinking about the appointment but even that didn't work really, and after a pathetic mile's run, I headed for the steam room and then home to wait. And while I was off doing my own distracting, poor Donna was at home, worrying just a little bit more ...

So when we finally sat in front of Dr Tueger (pronounced Tweeger), the nice Mr Haematologist, just before 11 am (yes, I did say just before our actual appointment time ... the service has been excellent at our hospital!), I think we were both wound up like elastic bands, waiting for the definitive diagnosis and plan for what would happen next. He announced that as he still hadn't had the second opinion on my biopsy back yet (bugger, it's been 9 days since it was sent, c'mon Liverpool, get a move on!), he couldn't be 100% in his diagnosis, but ... based on the information he had, and his examinaton of me ... as my lump basically walked, talked and looked  like a Hodgkin's lymphoma to him, he was willing to say that he was 90% confident that it was Hodgkin's lymphoma!

But it was the next thing he said that made me realise just how tense we had been ... when he told us that the CT scan (head to pelvis) showed that there "are no other growths anywhere else in your body", the relief that washed over both Donna and I was absolutely palpable. I know I felt my eyes tingle in relief, but Donna just let the tears flow at that point. This was BIG: he went on "it looks to me like you have a Stage 1 Hodgkin's, and I'd even say that, as we've got it so early, it could even be classified as an early Stage 1A, because you have no symptoms. If I was going to have to have cancer, this is the one I'd choose!"

Funnily enough, that's what my last oncologist said about my first cancer - a malignant soft tissue sarcoma, that was excised quickly and from which I recovered very quickly! It seems that there may be a short list of "better" cancers to get in the minds of these medical types, and I've managed to get two of 'em ... for the record, it is my intention to stop after this one, honest!

Dr Tueger went on to tell us that treatment would involve chemotherapy, using a drug cocktail called ABVD, and possibly radiotherapy after that, though given how early this was caught, radiotherapy might not be required. He wants to meet me next Wednesday (March 24th) to finalise the details (and finally confirm the diagnosis, as the 2nd opinion should be back by then), but he is planning then to start my chemotherapy treatment on March 31st. He thinks I'll require just three cycles of chemo (usually four to six are required, I think he said, but again, because this has been caught early, he's looking only at three), and each cycle will involve going to my local hospital (a 10 minute walk away!) for the day to receive my ABVD cocktail of drugs on the 1st and 15th day of the monthly cycle. There are likely to be some side effects, but these can be managed, though he thought it might be best if I took time off work for at least the first cycle to see how I responded or was effected. I'd expected that I would need some time off, but as I work for myself and don't have the luxury of being able to be signed off and have supported sick leave, I am hoping I'll be able to get back to at least light work duties over the course of treatment, but if not, I'll cope, believe me ... the priority now is getting this thing treated and getting well again.

There were a few more things to discuss and arrange, but when we left the consultation with Dr Tueger, I know we both felt a lot lighter ... we weren't ignoring that I still have cancer and I do need to go through a fairly powerful course of treatment, but knowing that my cancer is only in the one location (my neck) and that we appear to have caught it really early, really did make an enormous difference to how we had been feeling about this.

But as we walked away, knowing full well that there are still hurdles to overcome, it did feel that after a long, tense week, we were able to breathe again!

Last time I had cancer ...

It all happened so fast, really. Not the build-up, that took months and months, waiting for them to do more tests to explain what the lump on my arm was. But once they'd identified it as a tumour, it was action stations: diagnosed on Wednesday, lump-no-more by lunchtime Thursday, then radiotherapy, and all was well with the world.

The speed of it all didn't stop us worrying though, because being told you have cancer has that effect, really: you worry, plain and simple.

But the treatment was very bearable, and, having been told it would leave me feeling tired, I was a good patient, and took 2 months off work to have the treatment ... and luckily enough, I felt fine throughout. I even managed to go to the gym most days before my drive over to the Christie for my treatment every morning.

So the last time I had cancer, after the initial shock and worry, luckily, things went really quite smoothly. I used that time off to chill, and some good things came out of it ...

I got fitter than I'd been for a long, long time, preparing me ultimately for my 365challenge. And I gained in many other ways too.

A friend, Graeme, recommended that I should watch "The Wire", so I bought the box-set of Season One, and by the time I went back to work, I was chomping on the bit for the box-set of Season Four to be released, having devoured every episode in between. I'd never have watched it if I hadn't found myself with the time to do so, and if I hadn't, I'd have missed one of the greatest television series of all time!

Another friend, Dave, suggested I read "Dissolution", by C.J. Sansom, the first in the Shardlake series, set in the time of the Reformation. Outcome: read all four in the series. Loved them. And "Any Human Heart", by William Boyd, the stunning, disjointed autobiography of Logan Gonzago Mountstuart. Huw suggested that one, and it was absolutely absorbing.

I read other wonderful books, watched some great movies, and generally de-stressed from work, and honestly, as the treatment progressed, I felt more and more assured that that cancer was history. So last time I had cancer, believe it or not, the experience wasn't totally horrendous, but I actually came out of it having had some real positives.

It would be great to have more of the same this time ... so, any recommendations to make that more likely to be the case? Because I'm going into this looking for the positives from the experience ...

Some days are better than others, but today wasn't one of them ...

Today I learned that I have cancer again.

The type has yet to be finally and definitively identified and labelled, but it IS cancer, and I am going to have to have another course of treatment, whatever the final label might be. And, sod's law, the likelihood that this cancer is in any way linked with my previous cancer is just about nil. So lucky old Colin's only gone and gotten himself a second, different type of cancer 'cos beating one cancer just wasn't enough for him. The Pratt.

The ENT consultant today (this new lump is on my neck) didn't want to speculate too much because all of the test results are not back and so he didn't want to misinform me, but he did venture that he thinks it's most likely Hodgkin's Lymphoma, and, as he put it, if I had to have cancer there, this was about the best one to get, as the outcomes for treatment are pretty damn good! I'll hang on to that, because positive messages, wherever they can be found, are going to part of my armoury again as I take on this next fight.

But there are different stages to Hodgkin's and until all the results of the CT and MRI scans I've had over the past week are in, its not possible to say just what stage this is at or quite how it will be treated. My next step is to meet with the Consultant Haematologist (possibly not until next Thursday!), who should then have those answers, and hear from him just what treatment I have to look forward to. It could be radiotherapy, chemotherapy, or a combination, I believe, and the goal is to shrink the growth and kill it, rather than excise it, as they were able to do with my old adversary, my soft tissue sarcoma.

However, as I said, I need to hang onto the positives, and those are that this WILL respond to treatment ... so, whatever that might have to be, I'm ready and willing to have it ... as soon as you like, nice Mr Haematologist man ... please!

One thing that I do know is that, as a result of my 365challenge for Cancer Research UK (all that fund-raising better bloody well pay off now, CRUK; a fix wouldn't half be welcome right now!), I am probably now fitter than I've been in many years, so that is only going to help me in this fight. So that, clearly, is another positive to hold on to.

And so, oddly enough, is the fact that I have had a tumour before! Because, had I not had an unexplained lump on my arm three years ago that turned out to be that tumour, I might not have looked to have had this lump investigated anything like as quickly as I have had this time. And who knows what that might have meant over time? Getting stuck in now is certainly the best thing I could have done, I'm sure, and without my "prior knowledge", I'm unlikely to have done so.

So let's hope that we've spotted and caught this one good and early, but whatever the case might ultimately be, the fact is that treatment is on the horizon, and I am already looking beyond that horizon to the day I write another blog update to say that yet again, Colin has kicked cancer's arse!

I know I'll be fighting this day by day, but I also know that I have all of you lot out there cheering me on and offering me the amazing support I've enjoyed from you once before, all over again. And believe me, that means a hell of a lot to me, so ... from the bottom of my heart, and in advance ... my heartfelt thanks. C'mon, let's kick cancer one more time for Colin!