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 ...