A right to feel well?

So my neurologist said ‘no’.

I’d asked him if he’d bring forward my next MRI scan, from sometime in February to a little sooner. I’d been having more frequent seizures, lots of metalic taste in my mouth, and some headaches – indications, I thought, that something might be changing in my tumour.

But the neurologist said there wouldn’t be much point in bringing the scan forward; it was very unlikely my tumour would change in such a short time, and it was usual for symptoms to come and go in waves of intensity, over time.

All of which is good news and reasurring, if a little frustrating. And I am left feeling a little foolish.

Anyway, it seems I don’t have anything immediate to worry about, and we’re going to slowly increase my anti-convulsant medication to deal with the seziures. With any luck I should be able to get out for a decent length bike ride soon.

There’s a conflicting dichotomy at work here, I guess.

On the one hand I have extremely intelligent, very well paid, extremely overworked brain doctors and neurologists looking after me. In their professional opinion, my case shouldn’t be regarded as anything to worry about just yet.

And my desire to keep going out on the bike on a Saturday morning proably isn’t much of a priority for them. Fair enough. They must see some pretty serious cases, and of course they should get the expertise and concern.

But on the other hand, I do have a right to feel well and to a healthy active life.

I used to do a lot of work with Help the Aged, now Age UK. We used to do a lot of campaigning around the idea that illness isn’t just an inevitable part of growing old.

Too often older people’s complaints are dismissed – their aches and pains, their fraility, their memory loss – as just because they’re getting on a bit. And we don’t do anything about them.

Now I know how that feels.

Just because I have a brain tumour that will eventually become more serious, doesn’t mean that it’s OK right now to have headaches, or a metalic taste, or seizures every time I get on my bike.

My right to feel well hasn’t suddently become less than everyone else’s.

I tried to talk to an oncologist following my last scan, who made it quite clear she had no more than five minutes to talk to me. She then took four minutes of those talking jargon, and not telling her desperately waiting patient that the tumour hadn’t grown.

I had to actually ask, before she told me it was stable; though she knew that was the only thing we wanted to know when we walked in there.

When I told her about the problems I was having with the drugs, she said (practically with her hand on the door on her way out): “Well, you’re bound to get some side effects aren’t you?”

It felt like because I have a long-term illness, I should take any being unwell in the meantime on the chin. Just part of the deal.

Thankfully, my oncologist and neurologist both have Clinical Nurse Specialists (CNSs) working with them. They’re specially trained nurses who are experts in brain tumours, and fully understand the life, rather than medical, side of an illness like mine.

They fill in where the doctors – rightly or wrongly – don’t have the time or the inclination. I’ve found my CNSs – both funded by cancer charities – to be absolutely invaluable: they understand, they respond quickly, they chase things on my behalf.

And they don’t make me feel like I’m wasting their time, or worrying unnecessarily.

With CNSs’ huge impact on patients, I can’t help wondering why it is down to charities to fund them out of donations, fundraising events and corporate sponsorship, rather than the NHS.

Without them, I’d be a lot worse off.


Thank you to all of those who’ve read my most recent posts and got in touch, left a comment, sent messages of support, or picked up the phone.

I have had a tough month of it, but I’m definitely feeling a lot better lately. All indications are that there really isn’t anything to worry about just now.

Things do seem to have settled down a bit and I hope, with a tweak in the drugs, I’ll soon be back on my bike, writing more upbeat posts and generally getting on with day to day life.

Sometimes I even wake up in the morning and the first thing I think about isn’t my tumour and its implications.

As someone who’s worked in charity communications for the last 10 years, I’ve always admired Macmillan Cancer Support’s marketing.

One of their marketing campaigns centres around the Good Day/Bad Day language of cancer. You might have seen bilboards with the words Good Day written on them.

Before all this came along I thought I maybe understood what they were on about. Now I know that they have it absolutely spot on.

Today I attended my company’s last national training day for 150 charity writers, at which I led three workshops. It was a huge success for the fouth time running, and I felt fit and healthy throughout, if a little knackered by the end.

After too many Bad Days lately, today was a Good Day.

And that’s good enough for me.

One comment

  1. Really good to hear that, Gideon! I guess when one pootles through life with generally good health, there’s not much to worry about, but when that suddenly changes and ‘abnormal’ becomes normal, it’s hard to know when to worry and when not to worry, because good health is so often something one takes for granted until it isn’t there. I am so glad you have some excellent support from the CNS staff, it must be such a relief to be able to talk to someone that can help give practical advice and support. And let’s hope you’re out on that bike again soon – someone told me we’re due a nice spell of weather the next week or two! Blessings – Emma

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