Bad news I was expecting still hurts

One Long Goodbye
13 November 2017
Moving on. Grief and relief in equal measure
2 February 2018

So almost on a whim it feels, we’ve moved house, moved counties, changed everything. We’ve trundled down the M3, leaving behind one of the most landlocked areas of the UK, and rented ourselves a chalet bungalow while we sell our own. The new one is just a farmer’s field away from a cliff overlooking the sea and the Isle of Wight. Dazzling sunsets, blustery nights and the distant crashing of waves. Some bleating sheep chipping in from time to time. We’ve left behind fabulous friends – though it’s been brilliant to have so many visit already (thank you!). We’ve swapped one set of family for another, and found two new schools for our boys.

Change-averse curmudgeon that I am, I’m learning to embrace our new life as well as I can, and that challenge is made so much easier because our children love it here! Coco the cat is purring too, though not sure the dwindling local vole population is as chuffed. I miss our old life desperately, especially my family and the MS support network which was so important to me. I’ve yet to re-establish that here and I know my health is suffering as a result. I’ll get there. We’ve found a favourite pub, a favourite restaurant, a delicious Thai takeaway. Not quite the perfect chippie yet, but decent enough, and research is ongoing to fix that particular shortcoming. All in all, not a bad start.

Based on first impressions, and oh so important to us, the NHS set-up here seems just great. Lovely local surgery, prompt, polite, on it. Equally great hospital. An occupational therapist who cares, a few home physio visits booked, and a neurologist who is time-pressed (aren’t they all?), but knows her stuff. We had our first meeting with her this week, and she ran me through the usual pile of questions and tests. Push against here, balance there, clench this tight, pull that. Bla bla bla.

But then the prognosis. I knew it was coming, I’ve feared it but felt it, and my last neurologist had already suggested it. Sadly, both the old and the new brain gurus are confident my MS has moved into a new and uncomfortable phase. Where once I was ‘Relapsing Remitting’, I’m now ‘Secondary Progressive’. Complex wording for a complex development in my MS life. Essentially though, my condition will gradually worsen (well, it does that anyway, scarily fast right now), without some of the relapsing peaks and remitting troughs of yesteryear. An overhanging but small risk that I could worsen fast. No big deal. But the bad news, the really bad news, the bit I can’t yet get my head round: there is now little or no medication to stem the relentless downhill journey of ‘secondary progressive’ MS. And not a great deal of advance out there in research terms.

I feel a tad bewildered. Most of us with this illness shout ‘Cure MS’ or similar battle cries to keep us going. We know it’s unlikely, but just like the lottery, there’s always a chance isn’t there? Frankly, my new diagnosis means the odds of anything meaningful happening in my lifetime just dropped off a cliff. I’ve moved into the minority group of MSers. Drugs companies glaze over at the very mention of Secondary Progressive because there are less of us to make their millions on. Experts shrug because we’re too far gone and our condition is even less understood than ‘Relapsing Remitting’.

I’m a little lost, and it doesn’t make life any easier for the long-suffering Mrs W. Hey ho. I’ll cling to the fact our boys do like to be beside the seaside. And I’ll live in hope we can find some decent chips.

6 Comments

  1. Steve Lowe says:

    Mark, Mrs W, this may be seen as bad news for some, but I love your positive attitude and outlook on it all. Hundreds of people around the world – probably even thousands, either know you personally, professionally, or have worked with you in some area of your life, or have thrown themselves out of a plane with you. These are the people who follow your adventure in life. Who through this blog, and your ever encouraging and sometimes humorous comments on FB gain hope. You are both brilliant. Keep up the positive thoughts! Much love to you both (and the kids). Sx

  2. Grant says:

    Like you I live by the sea and I like to think it has a therapeutic effect on the mind and body. I admire your courage and you should take courage in the courage you have given to others. Best Wishes, G

  3. Patrick says:

    Living on the South Coast and close to the sea. I can small the salt in the air. I enjoy watching the waves and the ever changing views as the tide ebbs and flows. Yes, I'm just a tad jealous I do understand that it is a big upheaval especially with the new prognosis.

    You and the family have done it, well done. ENJOY

    Like you I get bewildered and annoyed at the lack of discernable progress of any treatment for people who have advanced MS. Next year keep your eyes peeled for the MS-CHARIOT trial

  4. Thank you for sharing – I hope you discover a good and postive MS network for you soon.
    Glad your family has found a new 'home'!

  5. It's hard to find the words to express how this makes me feel. You write so eloquently, emotionally and frankly. Your strength is phenomenal and I don't know anyone who could deal with the cards you've been dealt! Sending you and your family the biggest of hugs. You are an inspiration xxx

  6. So sorry to hear your latest news, but glad to hear about you & your family's new adventure by the sea.
    Your blog is an inspiration and certainly puts trivial worries in their place. Thinking of you xx

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