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 ... :)

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!