Tuesday, 30 June 2015

The Ride(s) of the Lymphomanator

And here we go... I am utterly astounded to see that, barely two hours after launch, we are up to almost £400. How I love the human race, how I love it's silly face (with apologises to Sir Walter!)
My fundraising page address:
Please share this with as many of your friends and colleagues as you can.

My sincere thanks.


Monday, 29 June 2015

Set goals they said...

A wonderful good Monday to you all!

After an all time energy low weekend full of sleepless nights and dream-walking days - still sore in the leg from Wednesday's training session (recovery is taking an age in recent months!), the high point came early when I finally got to meet and chat to the fine folk of the Invictus Triathlon Club at the really rather good Lily & Arthur's Cafe on Saturday morning. Chapeau to Clare for the introduction.

It has been absolutely fantastic to hear from so many long lost friends, former colleagues and rugby buddies. I genuinely had no idea I knew so many people! You guys can have little idea just how much your interest and contact means to me after all these years... a quarter of a century or more in some cases. You know who you are but special thanks to Nicola for the unexpected and unsolicited help and the seemingly ageless Jeff for the breakfast and trip down memory lane this morning in the outstanding - and very healthy - Cafe Gazura in Standish. I hope your expectations are suitably low for my return to Touch Rugby on Thursday! Jeff informed me of their healthy meal service and contact has been initiated to commence a trail at the end of the week - it seems to cost about as much as we spend - well waste - on the weekly shop so why not give it go. It is certainly a help knowing that three meals a day will be arriving. I'm really rather curious to see how this will work?

A big pat on the back to Chris, Leslie and my little Sis & Simon for keeping the conversation going. You kicked me out of a dark and brooding corner on more than one occasion. Thank you.

Later this day...

Well the GP has just departed and teaching is - I have just been shockingly informed - out of the question until the New Year. Why? The risk of infection, once chemotherapy commences, is far too high. and as the therapy will run intensely for 21 weeks my immune system won't be able to cope with the deluge of microbes we teachers are drenched with each and every day. Kids eh! To be honest the ramifications of this - financial and time based - have yet to sink in. I'm sure I can work in isolation on something or other - any ideas or, even better, offers? I fear for the "I-Love-Physics" message!

So, what will I do with my time on the days that the energy levels allow activity?

I would hazard a guess that those who know me can probably guess what's coming?

Charity fundraising: cycling, shaving, sports, strength stuff & studies.

Come on... you couldn't see that coming?

The Primary Goal: to raise as much money as possible for the Lymphoma Association UK


Well, with your help and support I'll be hosting and joining several events during the next twelve months.

Those magnificent folk at RM Fitness have jumped to the head of the queue and already suggested an event or three. Talk about a psychological boost. Awesome stuff guys, dare I say Bosh-tastic!

The 'WILL HAPPEN (as I've already signed up events) are....

July 2016: London to Paris Cycle Challenge: a bespoke 4 days of road cycling (350 miles-ish) finishing in Paris the evening before Le Tour de France. I have two domestiques already committed to the cause: Rory and Jeff and am looking for more. Please drop me a comment below if you are at all interested in joining us on the road to Paris. Of course if my health fails me, well, I'll still be there with you in some capacity - team manager probably!

August 2016: RIDE London-Surrey: A 100 mile loop around much of the 2012 London Olympic Road Race route. Closed roads and a Buckingham Palace finish means this "L2P reunion" will be a very special day.

My personal target is to raise a minimum of £2500 for the Lymphoma Association UK via these events. Please help in any way you can. As soon as I've saved enough I fully intend to cover the cost of my ride myself thus ensuring that the charity will receive every penny I raise.

The 'going to happen but still in the planning stages' events...

July 2015: A sponsored head shave: well if I'm going to lose my magnificent flowing mane it WILL be on my terms and for a worthy cause. Details to come.

July 2015: A Great British Tea Break: This will hopefully be a regular event however the first will probably take place in the gardens of the semi-detached Chateau-Dey. Details to come. EVEN BETTER: if you are a cafe (by are I mean run!) and would be happy to host this fundraising venture that would be amazing - please contact me via email or the comments below. Think of the PR - the press will be all over it :-D

As there is no local, and by local I mean Wigan & Standish Lymphoma Association Support Group I will be contacting the charity to discuss the possibility of hosting one. Although what I have to input into this is minimal? We shall see what transpires.

Where am I now with respect to the cancer and its treatment?

Another armful of blood was given last Thursday and I am scheduled to meet the Oncology team on Monday 6th July. I assume to discuss the treatment protocols and to inform of the Do's & Don't's? The letter contains no information other than the appointment details so I think I'll phone up for a chat with the secretary to find out if I need to bring anything along or fast or something?

As I've already stated I fully intend to continue to train during this period - more out of research curiosity than any expectation of improvement. The plan is 2-3 sessions of strength work each week interspersed with an indoor/outdoor road cycling plan: using The Sufferfest Training videos, my beautiful Classic Lightweight, the Elite fluid trainer and TrainerRoad, all following an adapted Novice 10 week road programme. I also hope to be able to join in the Thursday evening Touch Rugby sessions (but have no illusions about lasting more than a minute or two!) If I'm at all able I'll try to attend as many of the Invictus Triathlon Club's slow group rides as possible - yes roadie friends, I have joined a triathlon club ... please comment as soon as you have forgiven me, and no I will not be riding around in budgie-smugglers and a sawn-off skin tight vest - the good people of Lancashire will NEVER be ready for that!

And there is my ever present dream of finally learning to swim without the fear of drowning?

I'm also looking at on-line study and professional development and have signed up to a few Coursera courses.

Thanks again everyone. The nerves are jangling as the dread chemo' approaches... Eek!


Saturday, 27 June 2015

Thursday, 25 June 2015

Dawn of the Diagnosis

Low grade B-Cell non-Hodgkin follicular lymphoma. You will require chemotherapy, probably 6 sessions of R-CVP with a two year of R maintenance.


Such was my expletive - well one of them - when Mr Zach (Surgery) gave me the general surgical finding & then, about 45 mins later Mr Maddox (Haematology) informed me of the most probable diagnosis, future tests and treatments. He spent a long time with me and went through everything in fine detail. So very much appreciated.

I would like to thank both gentlemen and their hard working staff - at both the very good Friarage Hospital and the James Cook University Hospital - for all their efforts on my behalf. It was refreshing to work with such efficient professionalism. Thanks guys, you made this difficult process as comfortable as possible. I'd also like thank Dr McCormack of the Whitby Group Practice for such a swift referral for Ultrasound and a staging CT, & Dr Southern, my new GP at the Dicconson Group Practice on the other side of t'Pennines for his time and communication. My confidence is high that I am in good hands.

An aside... The NHS has been nothing short of very impressive so far... let's sort of their funding & medical staffing please... perhaps I could then have my MRI before the Big C goes into remission... a spontaneous one I hope!

So what did the medical teams unearth?

Well, it appears that abnormal nodes had manifested in two places: The right shoulder/neck (site 1) and left groin (site 2).

Site 1: A subclavicular lymph node of 1.7 x 2.2 cm in cross sectional diameter - that's a big lump on and behind the shoulder blade to you and me - that the surgeon removed in it's entirety (called an excisional biopsy) leaving a rugged and manly scar that I will claim came from an honour joust in a Bavarian duelling club! Interestingly, my right shoulder range of motion is noticeably better? Perhaps this little blighter had been there for longer I would care to imagine? But then again perhaps it's all in my imagination? Physiology or psychology... the eternal question!
Site 1 Excisional Biopsy Result: low grade follicular lymphoma (grade 1/2)

Site 2: A left groin node cluster with the main protagonist at approximately 4 cm with 2-3 surrounding shotty lymph nodes (shotty = the nodes palpate like shot gun pellets would) at just over 1 cm (1 cm is, I am told, to the extreme end of normal... who knew these lymph nodes were so large?)
This little cluster was investigated through an incisional biopsy - I came of general anaesthetic with a rather alarming pressure dressing bulging through my sexy surgical gown - and the results presented to me last Thursday (11th June 2015, 6 days after surgery (5th June 2015)
Site 2: Incisional Biopsy Result: 80% low grade follicular non-Hodgkin lymphoma but with a component of grade 3A disease (High grade) which was quantified as representing 20% of the lymph gland.
Post-surgery and groggily rocking the gown.
The Friarage, Fri/Sat 5th/6th June 2015. 
Whilst discussing the 'what comes next' phase I was told that a bone marrow biopsy would also be required to allow for a type 3a or 3b diagnosis to be confirmed and also to check for markers below the resolution of the CT scan - and thus to fine tune the chemotherapy. I casually suggested that whilst I am here I'd be more than happy to have it now (thus saving another five-hour drive). I almost fell off my chair when he said OK and arranged for a colleague to take the biopsy 'in 15 mins'. Both liquid (Aspirate: taking the liquid from inside the bone marrow) and solid (Trephine: taking a small core sample - or two - of the bone marrow to allow for an obervation of the bone marrow within its' scaffolding) samples were required. It appears that playing lots of rugby increases bone density... the Doctor - a very nice chap from Somalia (with a fascinating story) - did not find it easy to breach the Dey bone barrier, however he was glowing with pride at the quality of his samples... 'the best I've ever taken' he told me as we discussed the mechanics of the procedure and scrutinised the slides and sample jars. It was all rather fascinating - at least I can say that I have seem my own bone marrow!

So what now?

I have had a remarkably smooth and rapid referral to the brand new local Oncology/Haematology in Wigan and my 5 hour round trip by car becomes a 20 minute walk - pleasantly reducing the strain on both myself and the NHS support services. We await the bone marrow biopsy results and, on finishing this post, I'll pedal my way to the Thomas Linacre Centre, Wigan, to give more blood samples. I then meet the Oncology team on Monday 6th July... and so it begins.

Things I've discovered on the way...

  • The generosity of spirit and kindness of friends and acquaintances has been so overwhelming that I have, on more than one occasion, had to dab at the old cheek. I must have got something my eye!
  • The support and offers of help - from all over the world - that is flooding in is breathtaking. Thank you all. I was so shocked (in a good way) by Russ and Sam's RM Fitness offer that I don't think I responded terribly clearly. Such magnificent and deeply thoughtful generosity deserves - and will receive - it's own post and timeline. In the meantime... body fat WILL reduce. As they say at RM Fitness... BOSH!
Want to change - do it here... they are the very best of the best.
  • I should have contacted the simply outstanding Lymphoma Association UK far sooner: their Freephone Helpline 0808 808 555 - Stephanie was the lady I spoke to - is useful beyond words. I babbled, I planned unrealistic goals, I raged, I denied, I delved deep into self-loathing, etc, yet a calm voice always returned me to a sense of pragmatic reason (an unusual state for me at the best of times!) If I say I had a smile on my face and a notepad full of things to do and think about then you will understand how helpful this service is.

  • I need to make concrete, hopefully achievable, goals; the response to chemotherapy will dictate the reality here - more on this later but you can probably guess what's coming... yes, bikes, runs and ... drum roll ... razors! be ready for a few events in July! I will be raising money for the Lymphoma Association and, perhaps, a local cancer cause... keep your eyes peeled for Virgin Money Giving link ;-)
  • I'm finding the MacMillan Organiser a very useful piece of tech' that allows me to keep the ever growing appointment list and notes in one place. Thank you.
  • What I eat has now become very important to me and thanks to Mandy I am now discovering the macrobiotic food stuffs available.
  • I will carry on physics exercise for as long as possible and will not become disheartened by any energy, fitness and strength losses - they will be explainable.
  • Sleep - regular, consistent and high quality - is vital. I seemed to have developed what I shall call a 'jolly insomnia last Thursday. I felt absolutely fine, indeed having had the diagnosis thus ending the waiting I felt better than I had for many a moth. I went to bed at a usual time but then gave up at 3.50 am (it was already light) and got on with things. It was only last night that I slept fully and deeply - probably due to Sam's PT session and the 'growler challenge' finish.
  • At least I now know that the lethargy that has been haunting me for several months - only three bike sessions says it all - has a probable cause, But then we again return the physiological V the psychological?
  • Stay positive and keep usefully busy - easier said than done now work is out of the question for 3-6 months. I shall am for a realistic goal of a January 2016 return to the physics lab & classroom. In the meantime kids, always remember... Physics is your Friend!
  • My garage project will be to rebuild a fine chocolate brown & gold 1970's Woodrup Audax bike. Prepare to be bored into a coma :-D
  • Social Media is proving to be lifeline. 
So we are where we are. The sense of relief of knowing is palpable, the waiting to find out was psychologically draining and destructive and had been going on for a few months! If I have offended of failed you during this time then I can only apologise. Having a foe to face is - however terrifying - also liberating. I can now make concrete plans and make strive honestly towards a happy life (and a new bike... of course!)

I'd genuinely love to hear from you. So far it has been the trusty Knights of Sufferlandria who have commented; no surprise from such a wonderful and positive community of nutters!



Wednesday, 17 June 2015

The First Post (insert optimistic bugle here)

It helps to write things down I was told. It helps to talk. Well, as someone who's nature is to forever see the world through, possibly naive & endlessly optimistic, rose tinted spectacles this reflection and communication from the heart is not at all easy. As I was writing this a message came through from the owner of a superb training club (I don't think he'd like me to use the word gym?) in Wigan: RM Fitness, and as I was typing my reply it dawned on me that this would make for a good first post...

In reply to RM...
yesterday I had a phone call telling me I need to see the haematologist and consultant tomorrow... to discuss the excisional and incisional biopsy results... and the treatment protocols! At the James Cook University Hospital, Middlesbrough!

This came at almost the same instant that I had got a 10 week fitness/nutrition/life plan together and was well on my way to balancing my teaching, ahem, 'career' with the time needed to care for my Mum (and her cat) and prepare for a new school in August/September. All is on hold now.

Frustration is the word!

It's like a boxing match: you get on your toes, dance and jab, throw the occasional right hook at life's idiots and then - BAM - something as simple as a phone call has you on your back before you know what happened. Well, the only thing to do is clamber to your feet, start dancing and fighting back. Not much sleep last night and very little in the way of productive work. [however] a much better start to today - sometimes you need a 12 hour 'count of 10' I guess? I've decided to blog this latest adventure - wherever it may lead. I've also set myself concrete - I have already registered - post-treatment recovery goals. [This is something I need] I've entered the 4 day London to Paris 2016 'Le Tour' cycling challenge (I'll be nagging YOU ALL to join me soon) along with Ride London (101 mile, closed road next may.) Both will involve fundraising for the Lymphoma Association. I think a concrete, achievable & hugely enjoyable target is the only way for me to go... it will give me physical focus and allow me to maintain optimism through the worst of the treatment. I just hope the cure isn't as bad as the condition!

I can only speak for myself but this WAITING during the diagnostic phase is interminable and, if allowed, overwhelming... I have certainly not handled some days very well at all: from deep emotional lows to almost euphoric highs - such inconsistency of mood cannot have been at all easy for those around!

So my journey so far:- from initial GP referral -to- Ultrasound scan (5 weeks) -to- CT scan (3 weeks) -to- urgent call for excision (shoulder node) & incision (groin node) biopsy surgery (5 days), to the APPALLING water-torture-wait for results has returned me to the phone call above.

The surgeon suggested I prepare myself for probable radiotherapy &/or chemotherapy - a reluctant opinion dragged out of him very much at my request, as I need as much information as possible to stay as close sanity as I can - friends may offer a different opinion on this sanity clause :-)

Tomorrow, I will know.


PS... please leave a comment with your thoughts, ideas, suggestions and advice. At this stage anything will be a strong candidate for 'helpful'.