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!

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