All things related to Sobell – either blog posts while there or about them in general

One of the many things I love about being cared for at Sobell House Hospice in Oxford is their state-of-the-art treatments. These people are experts at making sure you’re squeezing as much out of life as possible. (Hospice? Living? Yuh-huh!) Never mind the drugs, what I’m really talking about is the salt water. Or possibly the bubble bath. Or may be it’s the Sunday lunch?

There’s much more to caring for someone with a terminal illness than the medicines and the treatments: although they are incredibly important, of course. Knowing that Sobell is a centre of excellence for  palliative care was a solid source of comfort for me in the first few days of coming here, as I learnt to trust myself to these people I didn’t really know. I’ll confess to allowing myself to become very scared for the first few 48 hours or so. The nights were long, I couldn’t walk and I was alone in my room. Lots of thinking time! My independent life had just come to a juddering halt, it was clear that my cancer had at long last caught up with me and I needed to completely readjust my world view. On the morning after being brought in, I was a scared little girl. My breathing was bad, and I was very low. (This taking nothing away from my husband and staff, by the way, who were kind and supportive and loving. But sometimes a patient will need to retreat into themselves to cope with the shock of what’s happening. I needed that time. )

One of the first things I was asked was if I wanted a bath. I think I said no, it was too much bother for them. Very patiently, it was explained that no, it was whether I wanted one. One was on offer, and with a smile they explained it was turbo-charged jacuzzi bath they could get me in and out of with oxygen on.  And bubble bath. Well…’ve got to try haven’t you? I haven’t been able to have a bath in years because of my mobility and breathing, (yes, yes, we have a shower at home) so the temptation to stretch out and wiggle my toes in hot water was overwhelming. And the effect was almost magical. I was wheeled back to my chair all pink and fluffy, happy and relaxed and, I suddenly realised, with much improved breathing. And all it took was some lavender bubble bath.

This has been mirrored in so many ways here. When I’m happy and settled and relaxed, I thrive. Like any patient would. And there are so many ways they make sure you thrive. Therapists roam the corridors, offering reflexology, acupuncture, massage, or just a nice haircut. There may be more – I haven’t discovered it yet.  Friends and family can stay over if they need to. My husband moved into my room after a few days to help care for me and keep me company. I love it. Staff don’t wear uniforms. Everyone offers a chat or cuppa. Every room looks out onto gardens. The meals are all home cooked on site. When I had a chest infection for over a week, staff noticed me hacking away and brought in a nebuliser that created a kind of steam that I could breathe through a sort of large hookah pipe to settle my chest. It was a very strange sensation to be sitting there looking as though I was toking on the biggest bong the NHS could provide – and all that was inside was good old sodium chloride solution. Salt and water!

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A very stunned Ali Booker wins Gold for Special Programme of the Year for her Cancer audio diaries at the Arqiva Commercial Radio Awards 2010. Award presented at Sobell House the day before the awards event as Ali was too ill to attend in person.

A stunned Ali wins Gold Arqiva Commercial Radio Awards 2010

Ali being far too modest to post this herself, it falls to her PA (OK, the husband!) to upload this piece of audio of the moment Ali wins Gold for Special Programme of the Year at the Arqiva Commercial Radio Awards in London yesterday.

Ali was too ill to attend in person, so the devilishly cunning Sue and Ian at JackFM conspired to present the award a day early at Sobell House, videoing a very stunned Ali and keeping it secret from everyone else at Jack so it could be shown at the award event next day. Magic memories! Video to follow…

I’ve listened to it a few times now (OK, I confess… quite a LOT of times!) and apart from the immense sense of pride I feel this morning, I really hope this finally convinces Ali she does have an amazing talent and a very special gift for communicating and sharing her love of radio, music and how she deals with her Cancer on an everyday basis.

I am this morning the proudest husband walking the earth – today and every day in fact, and it is an absolute delight to post this today. Well done Ali!!

The evening was topped off for us with JackFm where Ali works winning Gold for Station Imaging. A great day indeed!

Listen to Absolute Radio’s Christian O’Connell announcing Ali’s win via the audio player below…

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One of the first things they handed to me when I was brought into Sobell House Hospice, just over a week ago, was a tube of NHS own-brand KY Jelly. Now, you can stop that right now. I know how far up your forehead your eyebrows just went. And just for that, I’m going to make you wait till the end to find out the importance of water-based lubrication.

I came into Sobell thinking big. Why weren’t my legs working? Would they ever work again? Was this the start of the collapse of my body? Was this what starting to die feels like? Was this going to hurt? If I couldn’t breathe very well now, did this mean I’d get so bad I’d frankly suffocate in my bed? I became acutely aware that I suppose it’s all very well swanning around talking about how to live with terminal cancer (and look! I’ve won awards for mine! Have you seen my silver Sony?) when you’re fairly well and can do stuff. Lying in a bed you can’t get out of was something very new and scary. I know there may be people reading this for whom this is every day life. And can I just say: respect. I do not know how you do it. I’ve been spoiled by my own independence for so long, that I had to fight to get my head around being dependent on others for the time being. Not to put too fine a point on it, a few weeks ago I was working five days a  week. Now kind ladies are pulling down my knickers for me as they put me on the commode.

And how they are kind. Not in a sickly-sweet, do-goody, we’re trying not to embarrass you kind of way. But in a totally professional, honestly you couldn’t do anything we haven’t seen before and do you need a few minutes to yourself for some privacy kind of way. I have never felt so at ease so fast. At ease and safe. Safe. Safe. Sobell isn’t a general ward on a hospital. These are the experts. Yes, experts in providing a good death. But in making the most of life too. A quick quiz question for you. How many people in the UK go into a hospice and come out again? The answer’s 50%. Respite care is a huge part of what goes on here. Not wishing to tempt fate, let’s assume I’m going home fairly soon. So far, I’ve had the care of doctors dedicated to this centre for a diagnosis and ongoing treatment. Nurses and carers do everything for me, including a cup of Ovaltine and a chat at 3 when you can’t sleep. They find vases for flowers from friends and show your husband how to convert the seating in the room into an overnight bed so he can stay through the long lonely hours of the night. (In fact, entire families and their pets can stay if need be.) Physiotherapists visit to show leg-strengthening exercises and ways of getting back walking using a Zimmer frame. An Occupational Therapist is booked to visit my home to see if there are ways of improving things there for me. Two massage therapists and a reflexologist rub my feet. (Not all at once!) I get visits from not one but two Bobs for pastoral care and music therapy. They’re called, in a typical touch of Sobell humour, Bob The God and Bob The Music.

Sobell does big. It makes a big difference not only to patients’ lives, but of those who love them. Support for friends and family is freely given.

And Sobell does small. It’s always the little touches that hit home, isn’t it? The famous drinks trolley that makes the round twice a day offering a nip of whatever you fancy. Or just a large tonic, in my case. (My friends will never believe me, but it’s true!) The design that ensures that every room looks onto gardens that are tended by green-fingered volunteers. The fact that whoever’s being looked after, they’re made to feel in control. It’s what makes life better for them, not the staff rota. The meals are homemade. I could go on.

So why water-based lubricant? Simple. After a while of having oxygen pumped up your nose, it can get a bit sore inside and out. There’s some technical reason why you shouldn’t put oil or grease near O2 (I seem to remember something alarming about explosions), so KY Jelly’s just perfect to soothe things. Don’t say you never learn anything reading these things.

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Well, that’ll teach me. Just when you think you’ve got this whole dying of cancer thing down to a fine art (the trick, as the song says, is to keep breathing – fools it every time), you’re brought up short. I was walking around happily on a Thursday, slowed down a bit by Friday and was in a wheelchair on Sunday. (Craig David would never have got those lyrics into a top ten hit, now would he?) My lungs were quite spectacularly refusing to co-operate. Mind you, the workout they got on that Sunday would have slowed down a horse…..watching Oxford United thump their way past York City to make it back into the Football League might have taxed even the healthiest pair. What a game! I’d wisely taken off the Monday, knowing the excitement, win or lose, would exhaust me. Monday found me in bed on oxygen and still unable to breathe.

By Tuesday, even I had to admit defeat (finding yourself breathless when you’re lying down and plugged into an oxygen supply is never a good sign). This had to be a chest infection, right? By the time I’d made it into the doctor’s surgery, I was gasping. “Stay standing” he said “while I listen to your chest”. At which point I had a mini panic attack, mainly out of sheer embarrassment at the way I couldn’t control my breathing in public, in front of a stranger. He took one look, calmed me down, whipped out the emergency oxygen and his pen, wrote a note to the hospital describing me as distressed, cyanose and grunting, and sent me for an emergency xray. And how do I know how he described me? Because I opened the bloody note to the hospital, of course. This is my life, after all. I had to look up ‘cyanose’ and ‘grunting’ in medical terms, mind you. (‘Blue’ and ‘She’s Really Not Kidding About Struggling to Breathe’ since you ask.) That x-ray confirmed that my lungs had bloomed with lymphangitis – swollen by the irritating tumours clustering within them. I was advised to restart some strong steroids I’d been on, and to up the dose.

To cut a long story short, I managed to mistake the dose, take double what I should have, start losing feeling in my legs, call my doctor (let the record show that Liz McKenzie is just the world’s best family doctor) who spotted the symptoms, halved the dose and said I’d feel better. I struggled on, and should have spotted the warning signs earlier. Little things like actually not being able to get myself off the sofa. That was scary. So you shrink your world a little and make do, and sit on a higher chair, because being a bit wobbly on your legs, it’s not serious, hey? Just me being silly. Not trying hard enough. 5 days later, after a weekend at a hotel with me pretty much wheelchair-bound and having to be hauled off the toilet by my husband (who surely must be checking the marriage licence for get out clauses by now) I admit defeat. All the way home I’d been mentally measuring how far our loo was off the floor and whether I could manage to stand up by myself. You’re way ahead of me on this one of course. I had a Dalek moment as soon as Andrew and my son Douglas virtually carried me into the house. Stairs. I’d forgotten about the whole bathroom and bedroom being upstairs thing. Bugger. There goes world domination.

So on a Bank Holiday Monday when you’re now weeping with frustration and anxiety, who ya gonna call? For me, the answer is Sobell House Hospice in Oxford. I reasoned: this isn’t life and death. So I can’t ring 999. If I ring NHS Direct, they will call 999 and after an unpleasant spell in A&E I will end up back on the 7th floor of the John Radcliffe Hospital and that is never, ever, ever going to happen again. (My only negative experience of the NHS locally. Every other single occasion has been brilliant. Just wanted to make this clear. The 7th floor is my bete noire though.) I finished chemo 2 weeks ago, so can’t ring the chemo ward. So I ask Andrew to ring Sobell, which I go to once a week as a day patient. They’ll have an idea of where to start. After calls to Geraldine the on-call Macmillan nurse, the call comes back. We’re sending an ambulance, you’re coming to us.

There is so much more of this to come, so you’ll have to forgive me if I leave this here and start breaking these blogs up. Or you’ll end up with War and Peace, and besides I need to tell you about the KYJelly. Till next time and I promise to blog very very soon.

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