Maggie Macmillan

I’m writing this while a third of the way in to 30 sessions of radiotherapy, and the side effects of getting a high strength blast of x-rays to the brain every day are starting to kick in.  Please bear with me if it’s a bit rambling and it takes a while to get new posts written.

Thus far, all my treatment had been at the main hospital in Newcastle, the Royal Victoria Infirmary (RVI) but from now on, everything would happen at the Freeman, where people from across the north of England with cancer, and tricky heart and lung conditions are sequestered away from normal hospital patients who might do them in with their germs and infections.

To say that it’s lucky to live within a 20 minute walk of both a leading national teaching hospital with excellent neurosurgery provision and a national cancer care centre set amongst the beautiful urban parkland of Jesmond Dene would be an understatement. I’m just a spawny get.  The Freeman also houses the main Macmillan centre for Newcastle, so I decided to have an amble up there a couple of days after the results came in, and see what was going on.

Having been told after my first seizure not to drive, it was now time to accept that I had to surrender my driving licence. The DVLA give you two options; surrender voluntarily or argue the toss and ask for a medical report. There seemed no point quibbling, I’d never dream of driving if there was the slightest possibility of a seizure. I also reckon (possibly incorrectly) that voluntarily surrendering the licence may be looked on favourably if I’m ever able to reapply for it.

Letter addressed to DVLA going in to a post box
AND the woman in the corner shop charged me 75p for a stamp! Grr.

I took the letter containing my licence with me to post on the way. Just as I was about to drop it in the post box I noticed that the tight fisted gits haven’t even provided a postage paid envelope! Yes, you have to pay (only pennies, but still) for the privilege of giving up driving. It’s daft, but it felt like surrendering a part of my freedom. There’s no such thing as ‘just popping’ anywhere any more. My world is now as far as I can walk without fear of having a seizure. Which is pretty much about 4 places, and I’d already bored of all of them.

Arriving at the Macmillan centre I met the lovely, calm manager, Jill.  She said that September was children’s month; whilst waiting I’d been looking at a great book aimed at helping kids come to terms with the death of someone they love. Once again I thanked my lucky stars for the near miss we’d had. There was a massive lump in my throat when we started chatting. She offered great advice and further sound Macmillan booklets on managing finances during long periods of treatment and how to talk to kids about what’s going on.

Then she mentioned the Maggie’s centre in the hospital grounds.

Jill: It’s got a lovely homely feel – you can pop in, have a cup of tea and there’s a kitchen table, where you can sit and talk to other people with cancer and their carers. Drop in whenever you want.

Me [thinks] I’d rather gouge my eyes out with a rusty teaspoon. Sounds like the oncological version of the Yorkshire miners sketch, with a bunch of sad, bald people sitting around that kitchen table saying stuff like:
I’ve got cancer of the leg!
That’s nothing! *I’ve* got a malignant FACE!
You reckon that’s bad? My ringpiece is 100% cancerous!

Me [says] Ooh yes. Lovely.

When later telling my amazing friend Jules, who also has a brain tumour, about this presumption, she replied with this quote:

"There is a principle which is a bar against all information, which cannot fail to keep a man in everlasting ignorance - that principle is contempt prior to investigation" Herbert Spencer

Fate was about to intervene to demonstrate just how apposite old Bert was.

Jill [fetching the Maggie’s timetable]: Ooh look! The monthly brain tumour support group is on RIGHT NOW! You could pop across and join in!

Even with my ignorant sneering, it’d be stupid to miss out on the only chance for a whole month to meet people with the same condition as me, and find out what all this being a brain tumour person malarkey is about, wouldn’t it? Yes it would. So I went.

I don’t like being wrong, and will frequently bend the laws of history and physics to make people believe I’m not. I’ve admitted being wrong about 3 times in my life. Make this the fourth. Maggie’s is *wonderful*. You’re greeted with a blast of warmth and chatter as soon as you walk in. Volunteers bustle around, making hot drinks and bandying cake around like it’s going out of fashion. The Grand Designs-style architecture and interiors are carefully thought out to offer both privacy and openness, whatever you want. If you want to sit quietly, you’ll be left respectfully alone. If you want to chat, there’s no shortage of people happy to do so. There are nooks, crannies, a roof garden, advisors, exercise machines, companionship, counselling and a library. I’m not sure that it is, but it certainly feels like it’s entirely created by people who’ve already walked this journey for those currently on it or embarking on it, and they know exactly what you need. The sense that this is a special place oozes from every pore of the building.

The brain tumour support group was in full swing, with a session on finances and benefits. People shared information such as how to get a free bus pass if you’d had to surrender your licence (bingo!) or getting free prescriptions if you have cancer, to accommodate the many thousand medicines you suddenly have to take.

Amongst the group were people and their carers at all stages of the brain cancer treatment cycle, and a fair mix of grades and deficits. People who’ve long since finished treatment come, many from a good long way away, simply because they enjoy the group and Maggie’s. Sarah and some of the other Neuro oncology team were there. I chatted to two guys in particular, Edward and Josh (not their real names) who were eloquent, entertaining and friendly. Both have grade IV tumours. Edward has some visible scars on his scalp, but otherwise, you’d never guess in a million years that there was anything wrong with either of them.

Whilst the euphoria of the diagnosis had stuck around, a new feeling now crept in. Confusion. Grade I and II brain tumours used to be called benign, III and IV malignant. The word benign is used less nowadays as even if the tumour is not cancerous, it is not harmless, which is what that word implies. There’s a finite amount of space inside your skull, all of which is already occupied by pretty important stuff, so anything growing in there will cause significant problems. Not very benign problems.

My confusion stemmed from not knowing if I had cancer or not.  All of these wonderful resources are aimed at people with cancer. I don’t have cancer, do I? If not, (which is my definite preference) then I certainly don’t want to take up resources and benefits intended for people in a much worse position than me. But then…. I can no longer drive, prescriptions are pretty much my biggest single expense nowadays, I have an oncologist, and will soon start radiotherapy and chemotherapy, so how does that work? Not cancer, just the accoutrements of cancer?

So I asked Sarah. Do I have cancer?

Hmmm. Brain tumours are different to tumours anywhere else in your body and we classify and treat them differently. But don’t worry, you’re young and fit and will cope well with the treatment.

Yes, she’d answered a slightly different question to the one I intended to ask, but who cares. She had called my young and fit, which no one else had done for a very long time. Sarah was my new best friend.

Still perplexed, and getting increasingly frustrated with still feeling tired after the biopsy, I visited Justin the GP a few days later. Justin is great. Thoughtful and laconic,  he soon put me straight.

Me: It seems to be taking ages to get back to 100% after the biopsy.
Justin: Ruth, no one feels 100% and you’ve got a bloody brain tumour. Don’t worry about the semantics. Every single brain tumour patient I have had the same experience as you – a sudden seizure and then an unexpected diagnosis. People always think headaches are the first sign but they virtually never are. Certainly never the only one. You may have accepted this logically, but it will take months to come to terms with emotionally. I’ll sign whatever you want me to. Bus pass, free prescriptions, give yourself permission to claim them. They’ll help. I’d even give you a form saying you’ve got less than 6 months to live, that speeds up applications right up, but erm… it might give the wrong message. Come and see me for a chat any time.
Me: Are you sure? I don’t want to take up your time when you’ve got sick people to see.
Justin: Nah, I live for this stuff. That’s why I’m a GP. If I wanted to chunk through patients and never get a chat, I’d be a radiographer. If you need me, tell reception and I’ll be sure to squeeze you in or give you a call the same day.

The NHS eh? Beyond priceless.

 

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