Tuesday 20 October 2015

I'm back... with apologises!

Firstly, I must apologise for the long hiatus. It seems that I was not handling things as well I was pretending - to myself and others! A bleak month ends with a little light at the end of the tunnel.

Today: Just limped (appalling sciatica - x-ray Fri) out of bed a after a full hospital(s) day.

Yesterday. 50:50 news…definitely an incurable sub-set of non-hodgkins lymphoma and as yet not treatable without a far greater risk of secondary tumours post chemo/radio. I can expect anything between 2-20 years with 10 being the median (to be taken with a pinch of salt) The Prof want’s a year to eighteen months of data so it’s all hands to the fatigue management pump. I also spent a few hours daunting but in the end incredibly hours with a Psycho-Oncology counsellor (CBT) who is going to help with the readjustment - long bike rides are, it is heartbreaking to type, a thing of the past now - it just takes far too long to recover (we are talking weeks as opposed to days). I can however go for the more high intensity 45-90 min blasts that I rather like so all is not as bleak as it sounds (and The Sufferfest is still ‘my friend’.) To give you an idea - I did a moderately heavy leg day in the gym last Thursday and I am still experiencing dreadful DOMS now - it is he lymphoma and not just chronic unfitness/laziness :-D

A big change is needed! Better news is that I can - and should/must - carry on with life as if the Lymphoma will go into voluntary remission (which it may well do) Although this will be a very different life to the one I had lived before. 

Teaching is what I know and can do well so I’ll be applying for A-level posts only and even those will have to be part time. So, it’s resumé and cover letter time… oh what fun! As any post I obtain will start in January at the earliest I am now a PT education and recruitment volunteer with the Anthony Nolan Trust (stem cell/bone marrow donation) & conference (education and copy) volunteer for the Lymphoma Association UK. We also have my first big charity day approaching - a yogathon of all things :-D Fingers crossed it goes well - I need to raise £3001!!!




Stay well… Winter is coming!!!

Regular updates from now... you have my word.

Nick

PS... Hope to see lots of you at the Yogathon - if it's a success then we could be at the genesis of an annual event.

Sunday 19 July 2015

Tomorrow - the day of destiny

After a seemingly interminable stasis it seems the 'to-treat-or-not-to-treat' decision has finally been made. Not only made but justified too... I'm told.

Let me explain as briefly as I can...

South Tees, early June: Low grade stage 3a & 3b B Cell non-Hodgkins follicular lymphoma that will need 6 sessions of R-CVP. A bone marrow biopsy was conducted a week later (no, we still haven't received the results!) So, no teaching for 4-6 months I was told - by a very caring surgeon and consultant. OK, I can deal with this - it is a concrete obstacle that can be overcome... in time. I departed my current teaching & house master post at the end of May and will not attend my beloved Deutsche Junior Akademien in Ostbevern (after seven stunningly successful years - although I am supporting as a 'virtual course leader'!). A rushed relocation back to the family estates in Wigan now sees me caring (badly, in Mama's opinion!) for a severely ailing mother & planning a barrage of DIY. Not quite the career projection I had in mind!

Wigan, early-July: A meeting with a jolly affable young consultant had me reeling a little... at nine o'clock in the morning the situation was explained as...
"[as] the supraclavicular lymph node was removed and there only remains the node* in the groin we will probably use radiotherapy to treat this site. But may also proceed with systemic chemotherapy, such as R-CVP or R-CHOP..."
OK, still no bone marrow results so this decision was based on exactly the same date as the James Cook University Hospital plan... but these are The Christie guys so who am I to question? Oh, and my blood tests had not been added to the system? Sigh, admin oversights are to be expected in such a stretched system. No harm done. Around four in the afternoon I answered a call from the consultant. What? No treatment? Nothing at all? Apparently the node* in my groin has stabilised - based on one palpation examination in the morning and a chat with me? It is not the policy to treat 3a low -grade lymphoma here (but it is in North Yorkshire & Teeside?) and as there is 'only' 20% 3b -  now 'slightly' -High Grade Lymphoma in the groin node* "we have decided to 'wait and see'" Obviously this was fantastic news but then came the ... incurable... will recur... treat with radio and/or chemo at some future point... with you for life... 10-20 years or no effect on life span... we simply don't know... and my brain just became a maelstrom of emotions, happiness/sadness/fear, confusion and fragmented questions. Now I understand why it is strongly advised that you take someone rational and calm with you to these meetings. My inexperience with these pressures cost valuable consultation time and many questions were simply never asked. No one to balme but myself for this. This came as a bolt from the blue - especially as I had spent days and nights frantically reorganising my life (and communicating with those around me) to plan for an extended sabbatical from the high powered world of physics and natural science education - mid-summer is NOT a good time to be hunting for a new teaching or HoD position! As chance would have it my new GP came to the house (Mama again) and when I mentioned this he was as confused as I. So, a letter asking for clarification was drafted and sent.

Wigan, mid-July: My GP received a response about one week later. It summarised pretty much all that I have said above and then an NB at the bottom mentioned the regional MDT meeting decision to hold off/delay any treatment at present in view of the small volume of disease (no, still no bone marrow biopsy results) and absence of constitutional symptoms, e.g, weigh loss (ha!) and night sweats. I am to followed up in the Lymphoma Clinic. A very nice lymphoma clinic nurse handed me her card and told me to call... about what she did not say? Nor what the clinic does? It is good, and I am very grateful, that the team have made an appointment to meet me tomorrow to talk through the reasons for their decision (perhaps the bone marrow biopsy results have arrived?). So, all I need to do now is to clam my mind and logically and rationally list my questions.... far easier said than done!

My number one question is easy... Why the permanent fatigue and excessive need to nap? I have asked several of the clinicians involved and none have really answered this directly. Indeed some have just ignored the question? If I can get rid of the fatigue then life may be able to begin again... with renewed vigour and sense of purpose: I am NOT the same man now that I was in early May. Despite the sword of Damocles and its 'incurable cancer' shadow looming forever over me - which I can deal with. The not having the energy to function, it seems, I cannot! This has - I must admit - affected me greatly and not in a good way. I'm either grumpy, impatient and mono-syllabic or high and euphoric! It's driving me nuts and I can only imagine the pain in the backside I am to those close me. Sorry guys - it's nothing personal. The sense of powerlessness over ones own life is insidious in its psychological erosion.

This has been a singular experience and I do feel rather like an individual in a giant, often bureaucratic, pinball machine.

Action has been taken... Questions will be penned... Answers demanded (in a rather polite, very English way)... The Carpe will be Diem'd!

A time for optimism and a positive outlook - see only the good:
In the meantime exercise has re-started (with an acceptance that far greater recovery time is needed) thanks to the amazing Russ, Sam, and the team at RM Fitness. Peter and his Broga classes. Invictus Triathlon Club and all the Sufferlandrian cycling fiends at The Sufferfest - I had to drop out of the 3 week climbing plan but am poised to leap into the novice road programme (and swimming lessons!) A healthy organic meal plan is in place thanks to Cafe Gazura (although I have caught Mama scoffing more than one of my meals!) It seems that exercise is my anti-depressant! Huge thanks to Nozad of Cycling Holiday Spain for his incredibly thoughtful and generous offer... If you are free during the first fortnight of September why don't you seize the opportunity to join us? It really is a dream trip - a first non-teaching holiday for me... ever!

The fundraising continues and the response has been magnificent - just a HUGE thank you to all the sponsors... This more than anything has really made clear what a wonderful world we can live in - if we choose to. Thanks guys.

Let's crack the incurable... we can and will do it!
If you find yourself in or around the Wigan area next Sunday: 26th July, come and join us for a Cancer Research UK fundraising morning - teams of ten finely honed and very sweaty athletes will be attempting to break a world indoor rowing record... the nutters (oh, hang on, I'm one - third team glory!)



Fingers crossed that in 24 hours I will be officially able to hunt for a new physics teaching post... or perhaps something else? A Masters year may be the re-set and foundation I need? Who knows what the future will hold... it just a glorious feeling to (perhaps) have one!

Thanks.


Saturday 11 July 2015

The Grand Lily & Arthur's Prize Draw

Hi All,

A little bit of fundraising for the Lymphoma Association UK here.



As you can see, I've bought 2 x £10 vouchers for the really jolly tasty and stylish Lily & Arthur's Cafe on Mesnes Road, Wigan.


These tasty morsels could be yours!
100 tickets are available at £2 each. Please pledge the money to me (you can give it to me at your convenience) or use the link to my fundraising page on the left or below:

uk.virginmoneygiving.com/NichilessDey1

Just comment, email, SMS or Facebook me WITH YOUR FAVOURITE NUMBER and I'll add your name to the list of participants - that I will post below (or an alias if you prefer?)


  1.  
  2.  
  3.  
  4.  
  5.  
  6.  
  7.  
  8.  
  9.  
  10.  Paula Dey (paid)
  11.  
  12.  
  13.  
  14.  
  15.  
  16.  
  17.  
  18.  
  19.  
  20.  
  21.  
  22.  
  23.  
  24.  
  25.  Paula Dey (paid)
  26.  
  27.  
  28.  
  29.  
  30.  
  31.  
  32.  
  33.  
  34.  
  35.  
  36.  
  37.  
  38.  
  39.  
  40.  
  41.  
  42.  
  43.  
  44.  
  45.  
  46.  
  47.  
  48.  
  49.  
  50.  
  51.  Paula Dey (paid)
  52.  
  53.  
  54.  
  55.  
  56.  
  57.  
  58.  
  59.  
  60.  
  61.  
  62.  
  63.  
  64.  
  65.  
  66.  
  67.  
  68.  
  69.  
  70.  
  71.  
  72.  
  73.  Paula Dey (paid)
  74.  
  75.  
  76.  
  77.  
  78.  
  79.  
  80.  
  81.  
  82.  
  83.  
  84.  
  85.  
  86.  
  87.  
  88.  
  89.  
  90.  
  91.  
  92.  
  93.  
  94.  
  95.  
  96.  
  97.  
  98.  
  99.  
  100.  Paula Dey (paid)
The Menu - but don't forge the specials!
Thanks a million,

Nick


Today is a better day..

Sheeesh! Yesterday was a bad day!!! I'm bottling things up too much. The analogy is 'shaking a bottle of cola' - at some point I'm too exhausted to keep holding the lid on. Does this make sense?

Today is better. Much better.

Keeping constructively busy seems to be the magic tonic: less time for broody introspection.

I have learned an important lesson in coping. A list is to be compiled by me every evening before bed.

Early to bed, early to ride. Etc...

Today has been productive. Paperwork (medical) filed and diary updated. Two bikes fully cleaned & checked, a green sludgy thing (yes I have a nutri-bullet! ) tentatively consumed, & team made for all.

Now a quick shower and a dash to The Delph, Eccleston, for a bike fit/set up/fine tune and my first experience - as an observer - of triathlon & IronMan open water swimming. All thanks to my new chums at the indomitable 'Invictus Triathlon Club'.

This evening I visit Sufferlandria and the good Dr with his rubber glove! Check out The Sufferfest to find out what on earth I'm talking about.

The only way is up. The battle rejoined.

Please click on the 'Sponsor me' link 😆

A plea: if any of you would be willing to display a Lymphoma Association collection box for me I'd be eternally grateful. Please email or drop me a line in the comments below.

Thank you so very, very much to all my astonishingly generous sponsors so far. You may never fully appreciate the lift it has given me.

Nick

Friday 10 July 2015

Frustration: the BP rises!

This is not one for the positive thinking movement.

I guess a single reply to an old friend on Facebook sums up the current situation .

Not every day is a good one - let's not pretend...

In response to post about a rather alarming capillary bleed in my left eye caused by consistently high BP ...

" No. Just very high BP. I should, apprantly, lead a less stressful life and take charge of my life. Wow! Was all I could come up with in way of a witty response. Still awaiting the 'to-treat-or-not-to-treat' confirmation & reasoning. One team = chemo, another team = radio in the AM and then [after a MDT? Meeting] no treatment neefed in the PM. Both have same data. Neither has looked at the full bone marrow results yet. As I type the GP calls again. They are just as confused as I although doing sterling work on my behalf, for which I am incredbly grateful. Letters are being written, meetings arranged. Oops, this doesn't breach the Münchausen-esque positive at all times policy of social media does it."

10 weeks of this has eroded to the core.

I have not slept with any consistency for a week or more. Which cannot be helping matters. I have upset & frightened someone I care for above all others, probably severing our final connection in the process. My organisational systems are crumbling. Action is needed. But what?

As for the exercise & healthy eating... well, despite a detailed 13 week plan, it has all yet to start. Last night I just glided to a standstill, climbed off the bike and brooded, grumpily.

A loss of job, the ending of a relationship in all practical purposes, yet another relocation, the inability to even apply for a post dye to the uncertainty, and a unforgiving and draining carers role have all combined to rather overwhelm at the moment. Add to this the frustrating variation in energy levels and lethargy and....

No, I haven't called the charity helplines. No, there is no one to join me in the clinical meetings during which the information is simply impossible to simultaneously listen to, discuss, question, & record. I am probably very much mistaken about a few key facts?

Such a relentless sense of the unknown, constant anecdotes from people who know know people who have overcome all with apparent ease and sans all assistance, and medical contradictions are proving deeply frustrating.

I just want to know what I need to do and prepare for next.

Bugger!

Thursday 2 July 2015

The Cost... Ohne JuniorAkademien!

No Deutsche Junior Science Academy for me this July. Absolutely heartbroken. No travel once the chemotherapy begins and still - I keep asking - no teaching until the end of the treatment.

Bloody Lymphoma indeed!

This is what I will be missing: http://biomimetics-ostbevern.blogspot.co.uk/

Thoughtful scenes from the 2012 Academy - Ostbevern, Muensterland.

This image alone I feel captures the true magical essence of the Junior Academy.
Photo by Peter Henley-Smith (who else!)
However Mel will bring her organised and magic touch - her project management will certainly be less 'creative' than mine!
In my defence - it got a lot better in 2014 :-D
Fame in 2014 :-D


Still, I really do hope to help from afar by setting up a far more in depth course blog - run by the students of course.

I'd love to hear from any of my former students - minions: you know who you are :-) - and colleagues. Please, if you can find the time, comment below.

A huge thanks to all who have made contact via Facebook - it really helped to brighten my day.

Good luck to Nadja, David, Mel, Tim, Peter, Nadine, and my replacement - whoever you are. I am truly sorry to have had to let you all down.

Nick


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:
http://uk.virginmoneygiving.com/NichilessDey1 
Please share this with as many of your friends and colleagues as you can.

My sincere thanks.

Nick


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

How?

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!

Nick 



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.

Bugger!

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!

Ciao,

Nick





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.

Nick

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