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

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!

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

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.