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!

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

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.