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,


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.


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.


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:

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.