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!



1 comment:

  1. Sir Dey,

    Again, your post leaves me with few words. You should have been a writer! Keep up the positivity and know that I am in your corner every step of the way!

    Mariah P. LeBlanc

    PS - The gown looks "fabulous, darling"... :)