Ten years ago today, I was kindly informed by Facebook, I
posted my first blog post.
It was a timely notice as I’ve been all of a dither
regarding my blog lately – do people still read this kind of blog, or have we
moved on to other forms of communication? Have a I lost all of my fabulous
readers through inactivity? I wouldn’t blame you. Is it worth putting up
with the rampant spamming which never used to get through, and shouldn’t get
through, but now does? But most of all, if this Menieres lark insists on
continuing (over fifteen months now, very tired of the time sap, I’ll be
honest) will I ever be able to create the time to write a blog post again?
I wondered if I should knock it on the head. It’s been fun.
We’ve had a good innings, me and the blog, but maybe it’s time to move on for
both of us. A definite split. No animosity, no bad blood, just time to call it
a day and move on to new pastures green.
But then the unexpected happened. I needed to tell people
and I didn’t know how.
It was actually late December and the further it has moved
into the new year, and goodness, don’t tell me we’re half way though February
already, the more stressed I’ve become about getting the message out. At first
I wasn’t so worried. I kind of thought people had forgotten. Not in an uncaring
way you understand, but in the way all our lives move on and other concerns
squeeze the older ones out, particularly if everything seems to be ok, tickety
boo, not a cause for concern. I knew that should things become a concern, all
you lovely people would jump to my attention. I know this because you’ve done
it before.
But I’ve learnt that just because people don’t speak about
these things, doesn’t mean they don’t worry. And If I’m not worried, I feel
incredibly guilty if you are.
Confused? It’s complicated.
The fact is, I woke up on 19th December 2019 with
a two and three quarter year old secondary cancer diagnosis. On 20th
December, with no miracle, no pioneering treatment, no magic spell, I woke up without
secondary cancer. Gone. No more.
Those fabulous medical people had held a Multi-disciplinary
Team Meeting (MDT) and decided I didn’t have secondary cancer.
I know!
But the diagnosis wasn’t a mistake all along, a cruel quirk
of fate to make me appreciate life. I already did, honest. I do, I really do!
No, indeed, if you scanned my body tomorrow not knowing any
of my history, the diagnosis would be the same as it was back in March 2017. You’d
still say this was a body which had one noticeable area of bone metastases in
the spine, and further spots in the pelvis. Just the same.
And that’s exactly the point.
Over the thirty-three months since diagnosis, evidenced in
every scan and blood test taken since then, nothing happened. Nothing changed.
It should have done. My treatment for secondary cancer has
always been conservative. Let’s not go straight back in with chemo and
radiotherapy, it was decided, because it all looks very calm and stable. So
let’s tweak the existing maintenance hormone therapy I’d been taking following
primary cancer, and introduce a pretty side effect free (zilch side effects for
me, actually 😊) bone hardening treatment, and keep
monitoring the situation.
Those clever people monitored. Each follow up scan appointment
was the same: no change. The areas in question were the same as in the first
scan. Nothing got bigger, but crucially, nothing got smaller, either. It didn’t
mean the treatment wasn’t working; it didn’t mean it was working. It meant nothing:
nothing was happening.
You have a funny body (!) I was told, more than once. Does
this mean I might be a good stat? I asked. If my funny body was showing no new cancer
and no ‘growing’ cancer, dare I think I might be one of the incredibly lucky
ones who really could live for another twenty years post diagnosis of secondary
cancer?
Nobody, understandably, wanted to go there. Cancer is a
fickle, devious beast that learns and re-invents itself in its quest to beat our
also incredibly clever body and treatments, and, faced with this, making such
bold assertions based on a hunch and unusual scans really would be foolish. It
could come back to haunt us.
But I clung on to it. I liked to believe that I could be a good
stat. It helped me get up in the morning and get through the day. It helped me live
a ‘normal’ life, have my ups and downs, get stressed even – to me, getting
stressed on a small scale is to be rejoiced. If you can fret about the small
stuff, then I think it’s a sign that you haven’t got too much of the big stuff
to worry about. I recognised my secondary cancer diagnosis had quickly morphed
into something that didn’t bother me too much for the moment – ironically the
Menieres disease had more of an impact on my everyday life – even if the niggle
was always there that one day this would probably change.
I held on to the dream that if I could live for years, I might
still be around for the time when secondary cancer, whilst unlikely to be curable
in the near future, could be managed indefinitely. Medication which is so mind-blowingly
clever it can learn faster than cancer does, and thus always stays one step
ahead of the mutations, is coming. It will happen, I believe, as long as we
continue to fund its development of course, but that’s another story
I allowed myself to think I had a very good chance I would
be the happy beneficiary of this new kind of treatment, whilst still very
mindful that oh, so many people aren’t as lucky.
But I wasn’t expecting this.
All of a sudden there was talk of MDT meetings and consensus
of opinion and having got enough evidence together to categorically agree that,
Mrs Buxton, this is not, in fact, secondary cancer.
Not secondary cancer.
Nothing happened: nothing changed, nothing reacted. Cancer
cells would have got bigger or smaller, they wouldn’t have stayed the same for
so long. Everything still evident on the scan is benign. It’s just that funny
body of mine. I shall repeat: I do not have secondary cancer - because I still
have to keep telling myself. In fact, despite the initial euphoria and a good
few glasses of fizz, it’s taken weeks for this new state of affairs to really
sink in. I still get very jumpy when I receive letters from the hospital in
those tell-tale envelopes, that they will open to reveal a letter of apology:
it was Jackie Buckstone, not Jackie Buxton. Secondary cancer diagnosis reinstated. As
you were.
I also don’t feel unbridled joy. I feel joy, happiness and
relief for me and my loved ones, lots of that. And I know I am the luckiest
girl alive. Alive! But I feel great sadness, and a certain amount of guilt, for
those who aren’t in my position. I wish I really could wave that magic wand.
I also wish I could have told everyone who’s been such a
massive support to me, in person. I am sorry I haven’t managed that. I’ve felt
so guilty about it and that’s when I thought I would use my blog again. It’s
very complicated to explain and not something you can suddenly drop into the
conversation if you happen to bump into someone mid chores. Without explanation,
people might have thought badly of the NHS. Please don’t do that. They did
everything right.
Meanwhile, I hope my story may give hope. A reversed decision
is not unheard of but very unusual and it would be irresponsible of me to pretend
otherwise. However, I read more and more of people living longer and better
quality lives with secondary cancer and there is much excitement about the
pioneering new treatments which we can already almost touch. The best us
ordinary mortals can do is support cancer charities (Breast Cancer Now and Cancer Research UK are two of my favourites) wherever we can. So much of the care for people with cancer,
and of the research into improved care and treatments is funded through charitable
giving. The Haven, a charity very close my heart, is entirely funded through fundraising, and this
is not unusual.
I’d like to finish with an enormous, heartfelt thank you to
everyone who’s carried me through my ‘funny’ body’s latest chapter of life. To
all intents and purposes, I lived with the knowledge that I had secondary
cancer for almost three years and I wish I’d known before the diagnosis that I would
still enjoy a life of so much love and laughter. I still believe that everything
else is fluff and noise. I’ll finish this blog as I finished my first post after
my primary diagnosis and the first post following my secondary diagnosis:
love really is what makes the world go around, or should be, anyway.
Here’s to a happy - and as healthy as possible - next chapter
for all of us 😊
I was scrolling, and in answer to your question, I'm still here. Well, kind of - because my own blog is on an extended hiatus, I don't comment. Not unless someone asks if anyone's reading, then I feel I ought to jump up and down and wave and say "Yes! Me!"
ReplyDeleteWhat an absolute roller coaster you've had. I'm so pleased for you :-)
Thanks so much, Annalisa! It is a massive shock and I'm still pinching myself - I still sometimes wake up in the morning and think, Well, would you believe it, I haven't got secondary cancer!!! But it's a wonderful shock, all the same :)
DeleteAnd you've done well, as I haven't even shared the post publicly yet, so you are definitely one of my top of the class readers!!! Is your blog on an extended hiatus for the same reason as mine???
Lovely to read this Jackie. I'm sure you'd rather not have had that cloud for the last three years, but enjoy that sunshine now. 💖
ReplyDeleteThank you, Jill. I shall bask in it (!) thank you x
DeleteGood news Jackie - congratulation Helen xx
ReplyDeleteThanks Helen! How are you?
DeleteOh Jackie I’m so happy, pleased and relieved for you and your family. I always new you were amazing! This will also give hope to so many.
ReplyDeletePraying the menieres leaves you soon so you can properly get in with your life. Much love xxx
Thanks Jill, I am so very far from amazing (!) but thank you, that's very kind of you! And, touching loads of wood - I shall whisper it, just in case - the menieres is fairly quiet at the moment, better than it's been for a long time, just sayin...
DeleteThis is such wonderful news Jackie! What a journey; so much hope to so many.
ReplyDeleteSo happy for you, and all of your family and friends. Xxx
Thanks so much, Antonia. It truly is the most mind-bogglingly fantastic news. I really do hope others will take much positive from it. Thanks for taking the time to comment x
DeleteFabulous news Jackie, you and your gorgeous family so deserve it! So pleased for you and enjoyed reading your blog, full of inspiration. Lots of love xxxxx
ReplyDeleteAwwwww! Thanks Sharron, great to hear from you and so pleased you enjoyed the read :)
DeleteLost. For. Words.
ReplyDeleteAmazing. Truly and utterly amazing.
Bless you, Stu! And truthfully, I think I've been lost for words for a good couple of months since we had the news. I was sort of going through the motions of believing it, but it's really only since I've finally managed to get the word out that I've really started to believe it myself!
DeleteJackie - this is the best and most deserved news. Unusually, I’m lost for more words but so delighted for you and your lovely family. PLEASE Keep blogging and inspiring others xxxx The Nash crew
ReplyDeleteBless you, Helen. Thank you for your lovely comment. I think I've been lost for words - on this subject ;) - for the past couple of months, so I know what you mean! I have to admit, it was nice to blog again... and thank you for the kind words on that :) It's tempting...if only there were 36 hours in the day, huh!
DeleteJust the best, best news, any other words would be noise and fluff 😄😄😄😄😄😄😄😄😄😄😄
ReplyDeleteCouldn't have put it better myself :D :D :D Thanks, Katie P x
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ReplyDeleteHi Jackie, 37 year old wife is going through treatment for the same cancer as you. Your book has helped immensely and she will be reading it today during her first herceptin treatment. I'm very happy for you and your family. Really great news xx
ReplyDeleteHi TJ, You commented a year ago and I’m very embarrassed to have been away from this blog for so long - long story - but I couldn’t simply pass on by now that I have finally seen your comment. Hopefully your wife is now finished her year of Herceptin, if on the same course I was on, and I sincerely hope she is doing well. I cannot tell you how happy it makes me to hear my book has been helpful. That is absolutely all it was ever about. Thank you for taking the time to write and all the best to you and your wife for a bright, healthy future.
ReplyDeleteSorry, my name is missing, this is Jackie Buxton here, I promise!
Delete