Tuesday, 20 December 2016


I haven't posted for an age.  I'd like to tell you something scintillating, saying my absence is due to me gadding about with the jet set or my ongoing commitment to the NASA training programme.  But the truth of the matter is I've spent much of the past few weeks feeling like the the other-half looks

And as if feeling grotty wasn't bad enough, the above photo was taken during my last visit to the Christie and shows just how attentive and alert Nev can be during my appointments.

A short break in the whinging though, to tell you the good news.  I had scan results last week and amazingly, after eight cycles of the trial chemo SYD985, there has been a slight shrinkage in the cancer in my lungs.  I was staggered and, obviously, very pleased.   

I hope you made the most of that bit of good news because I'm about to start moaning again.  I do want to try to be honest here and not be some sort of happy clappy falsely cheery cancer blog, so here goes.

Even though I had good results the breathlessness has got worse and worse.  I'm fine if I sit still but any sort of movement makes me completely out of breath.  As you can imagine this makes doing anything, let alone getting out, really difficult.  It's not like I have a wild social life but even so I've lost count of the things I haven't attended due to breathlessness and fatigue.  Thankfully I did manage to get to a recent appointment with the Palliative Care Consultant at my local hospice, who is worth her weight in gold.  She could hear a deterioration in my breathing but thinks the problem might not be a result of the cancer (although it might be chemo damage).  She has referred me to my local hospital's respiratory bods.  I'm currently waiting for an appointment and I really cannot wait.  If there's anything that can be done to ease my poor lungs I'd be extremely grateful.  

Also, if truth be told, I'm pissed off with looking dreadful.  I've got thin hair, no eye lashes, hardly any eye brows and watery eyes.  My appetite has gone west and so I've lost weight and am looking extra haggard.  Ah cancer, the gift that keeps on giving.

In other news my Eddie Redmayne look-a-like doctor at the Christie is moving on to other  film roles research so I'll be seeing someone new in future.  It was nice to wave him off as he gave me good news (the cancer shrinkage).  He was also able to give good news to a fellow SYD985 patient (and pal) who'd seen a significant shrinkage after just two cycles.  So to any Secondary Breast Cancer bods reading, who are HER2 positive,  I'd say the SYD985 trial is well worth considering.

Meanwhile, in spite of everything, life goes on.  And I do appreciate it, honest.  Christmas preparations are underway. The festive twig is decorated and on display (we don't run to the extravagance of a tree at Discombobulated Towers),  Hot Fuzz is on the telly and, hurrah, it's very nearly present time.

I leave you with evidence (as if any were needed) that a three-legged monster cat and a cream sofa are not a good combination.

Happy Christmas.


  1. https://www.drugs.com/drug-class/inhaled-corticosteroids.html

    1. Ta. The palliative care consultant mentioned this as a possibility but wants me to see respiratory people first. Got my referral date today, the 30th of sodding January. Now begins the battle to get it moved forward.

  2. Bloody hell! Well I suppose you've been a British law abiding tax paying citizen all your adult life - so back of the queue it is then - grrrr. You have my sympathies, I'm afraid it's the squeaky wheel that gets the oil - that's how we have to rolleave thear days - best of luck xx

  3. He wants you to see respiratory people first cos it's more than his jobs worth... groan. Liability culture - prolonging the suffer

  4. Time for an update Del, good news only please.

  5. I've been in hospital since last Friday. All sorts of tests and scariness going on. Now found that breathlessness is being caused by a pressure on the heart. They suspect that it's the cancer exerting the pressure but will be having a detailed heart MRI tomorrow to find out exactly what is going on. Meanwhile I've been prescribed beta blockers but haven't noticed any change yet. Am lucky to have been admitted to The Christie (had turned up for ordinary appt) who have been liaising with a specialist heart hospital nearby.

  6. Much love, hopefully they will get a handle on the breathlessness now at last xx