Wednesday, 17 February 2016

6 months into life with NHL - what I have learned

So much has changed. Work, pleasure, hobbies, even tastes and favoured flavours! The splendid Dr Gregory was spot on.

After a much need hiatus from the frenzied world of secondary science education I am back with a happy bang. Circumstances have led me to an outstanding (OFSTED's words, and mine) school on the edge of Bolton. I'm teaching physics again in a friendly, lively, very well led and highly talented department. Ok, so it's part time & through an agency, however that is all I can manage at the moment if standards and energy levels are to be maintained - along with visits to The Christie and local clinics! Returning to the physics lab has been a real blessing. After a five month break; and at one point it really looked like it was going to be at least a year, during which I came to terms with my new reality, fostered a magnificantly mischievous lurcher (greyhound-Saluki cross) by the name of Dexter, downshifted big time and returned to the family pile, I can honestly say that future, however foreshortened, looks to be happy one. The wonderful, and often unsolicited, contact and comments from folk far and wide, in both space and time have served to file smooth the jagged edges of a sometimes overwhelming reality. That being said the single biggest catalyst for positive change was, without doubt, Ann Crooke of The Christie and her psycho-oncology expertise. As sceptical, yet open-minded, as I was at the start of this course of treatment I am now firm advocate of it's concepts and  principles. If you are in a similar position do not hesitate to request a consult with a psycho-oncologist.

So, what have I learned in how to manage this condition? I'll list away to save on waffle - we blokes do like our lists! The following seems to work for me and is in no particular order...

- being honest and open about the cancer really helped me grasp the reality of my situation.

- my priorities completely changed. Don't fight this - it is entirely natural. Aside from the usual stuff we all have to deal with I am as content now as I have been for a very long time.

- knowledge = power, the power to face and deal with the often insidious effects of NHL. For me the persistent weariness was the goblin crouched on my shoulder. It has taken six-months but I feel I now at least have a plan of action that will minimise it's effects - or even distract me from over-focusing on it. I'll summarise my 'findings' below. I am also one of those people who need to know everything about the condition - science blogs and sites, current and recent research, clinical trials, journals... you name it I have dipped in, downloaded, deliberated upon and digested. In fact, if anyone would like to offer me access to the journals I'd greatly appreciate it ... it's costing a small fortune to delve beyond the abstract!

- laugh at your lymphoma! I acknowledge that this won't be for everyone but for me it helped to disarm the darkness during my worst moments (which I have kept very much to myself.) I would feel physically as I researched and discovered more about NHL - it was fear - and I often buried my head in the sand. Not at all helpful. I now refer to 'Tiberius the Tumour' (right groin, enlarging lymph node cluster), and get all light-heartedly grumpy at the evening itches and night sweats... that have just started to become noticeable (in fact, I'd better contact the Oncology team about this!)

- be active. exercise is vital. More on my, ahem, regimen, later.

- watch what you eat... common sense and real food only if you please.

Right, this is all very vague so there follows a summary of the steps that I have actively taken:-

1. Sorted out my sleep: how? I purchased a Fitbit Surge, which automatically monitors sleep, steps, exercise, etc, oh, it also tells the time too. I also tried and failed several times to leave the bloody iPhone & MacBook downstairs when retiring for the evening! I'm not there yet but progress is being made, sort of! This isn't rocket science but being a lot more consistent about when I go to bed and wake up has helped hugely. This more than anything has smoothed the worst excesses of the perception of fatigue. 10 pm to bed, read a book (remember them!), drop off to sleep, wake between 2 and 4 am to peel aforementioned book from cheek (I'm not saying which one!), drop off to sleep, awake ready and raring to go (occasionally) at 6.45 am. As I now seem to share my bed with a small pony called Dexter this has been a lot of fun.

I used to enjoy the warmth and luxury of a large bed. Now consigned to the white strip on the right!
2. Sorted out my diet... or, if I'm being brutally honest, learning about what I should be eating but then failing to implement the plan! Sam of RM Fitness and Sue of The Coven Cafe fame have really helped here. It seems that for my physiology a vegetarian-to-plant based regimen has the most profound and positive effects. All moments of weakness (steak, how I love steak, and bacon, and pulled pork...) have been entirely my own and absolutely nothing to do with the NHL! Get a grip Dey!

3. Got a fitness coach! Yes, me, with a coach :-) OK, this is cycling specific - I promise not to bang on about all things bicycle here (I seem to have filled much of internet land with the bicycle!) But nevertheless huge thanks to Gary of Certa Cito Cycle Coaching for accepting the formidable challenge of this possibly lost, and large, cause. Still, it was justification enough to take to plunge in to the promise land of the power-meter... marginal gains, team, marginal gains! In all seriousness, being accountable to somebody other than myself has kept me going. That and wanting to drop the legendary Nozad on my next visit to his Cycling Holiday Spain... Spanish climbing hell! Riding a bicycle (however high-end!) with good friends, old and new is life-affirming in ways that only by doing will you understand.

An eagle ascends... slowly, oh so very slowly!
The Team... CHS, September 2016. Well, I made half the rides!
Sometimes is wonderful to meet your hero... The Jensie at Cyclefit Manchester.
4. Adopt a sighthound: Fostering Dexter, now possibly my very best chum, has been a life-changing experience.

He counts on me for exercise, for food, for play, for relaxation... he's a living, breathing, beautiful soul - and he knows it - and however much the fatigue is screaming at me his needs will always win out. Thank you to Patch for the in aspiration and to Northern Greyhound Rescue's Manda and Natalie the real super-vet, for the trust and for, well, Dexter. Now, if only I could stop spending all of my money on his dog outfits!

5. Follow your dreams and try something you have always wanted to try...
Robin Hood's Bay Hawk and Owl Sanctuary 
RM Fitness - from the deranged mind of Sam D! 
The outstanding Junior Science Academy, Ostbevern, Germany. Now about to plan a new course for my 6th year.
Mud, glorious mud... and 10 km of it... with obstacles!

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.


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!


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:

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?)

  10.  Paula Dey (paid)
  25.  Paula Dey (paid)
  51.  Paula Dey (paid)
  73.  Paula Dey (paid)
  100.  Paula Dey (paid)
The Menu - but don't forge the specials!
Thanks a million,