L-R Mary (Dan’s mum), Katie, Anna (Dan’s wife), me, Tracy and the little people
Last night five of us walked 15k in memory of my friend Dan Moore. Dan died in February from an aggressive brain tumour, you can read more about his story here. We set out to raise £500 between us and I’m delighted to report that we’ve almost raised £750 now. We wanted to do something to personalise things, so we had our names and Team Dan-Dan on the back of our t-shirts but we also decided to each wear one of Dan’s hats! Dan had surgery when he was ill a couple of times and was always a little self-conscious of his scars so you’d rarely see him without a hat over the past few years, luckily he had quite a selection – and not all woolly ones, it was way too hot for woolly hats yesterday but luckily by the time we set off at about 9.30pm there was a lovely breeze.
It took us about 2 1/4 hours to walk the 15k and one of the things that pleased me the most was my desperate want to run!! This is very unusual for me, despite signing up for the Cardiff Half Marathon in October I never *want* to run – it’s always a battle with my subconscious to get out the door in the mornings, but last night as we were walking around Swindon I really wanted to pick up the pace and run!! Obviously I didn’t because we were walking as a team and chatting and reminiscing but the very fact that I wanted to pleased me no end – we’ll see if the enthusiasm remains next time I go for a run, but for now I’m chuffed with that.
So we walked our 15k and got to each set a balloon off in memory of Dan with a message attached, and then back to Anna’s house for champagne and cocktails. Dan’s dad, Dave popped over for a beer after work, Andi who’d been babysitting the kids was also there so we had a mini party with drinks, photos and reminiscences. This morning coffee and chocolate croissants were the order of the day, Anna got to spend her first wedding anniversary surrounded by us rabble and she was already planning what we could do next, something more of a challenge, so watch this space. Don’t worry though I promise not to ask for another penny from any of you guys, I appreciate all your donations no end. It really will make a big difference to someone’s family and friends at their most difficult time. Thank you.
Big thanks to @markbigsw @dalekdoctor @fergusbisset @amcunningham @rufflemuffin @irishandrew @soundgirl64 (x2) @alpew @sarknight @juniorc0 @jeanetteleech @hen4 @segelstrom @tomarse99 @redjotter @katiekatetweets @rich_w @niccombe @laurenivory @mikey3982 @andrewspong @hgholt for your donations. If anyone else reading this would like to donate please visit http://uk.virginmoneygiving.com/team/TeamDanDan or http://www.justgiving.com/team-dandan Thank you.
For anyone who has found watching England in the World Cup painful this week, take that sense of expectation, hope, belief, disbelief and the gamut of emotions you go through and multiply it by one hundred and you might start to understand how I felt on Thursday when I went with my parents to find out whether my Dad’s cancer had returned. Or so we thought. I’d outlined how I expected the day to pan out here. Some bits were exactly as expected, others not so.
First up the folks weren’t dressed as expected – Dad had on a t-shirt and mum sandals (that’ll only make sense if you’ve read this). The rest was pretty much as predicted, we got there 40mins early and had to loop around the carpark twice to get a space, the letter was indeed consulted before entering, mum went off to use the loo, Dad commented on the weather, his files were there but then the visualisation went to pot.
We went around to the usual waiting room and spent the next two hours waiting! This is an absolute record for us. Dad’s consultant was held up in surgery; I know there will be many people reading this (I’m thinking particularly of you Karen ) who will be fuming at this – once the grumbles started I asked my folks whether they minded and their response “we’d wait all night to see him” – this is the loyalty for someone who without doubt has given my Dad three years more than he would have had without him.
That said, we didn’t know there was a delay until we were already 90mins late, at which point a message came up on a tv screen behind where we were sat, saying the clinic was running an hour late. In my opinion it would have worked much better if a person had come out and addressed the people waiting and let them know. Instead at the point when it became apparent that people were getting uneasy about over-running on parking (I’d already decided I was going to run the risk and argue afterwards if I got a ticket) someone did come out, take registration details and let the parking attendants know. They then also, when asked, let people know how many people were ahead of them in the queue which meant people could go off to the bathrooms or coffee shop without fear of missing their appointment.
What followed was also as predicted, the weight check, the lack of chairs, the consultant’s questioning, Dad’s response….all of it as expected. Until we got to look at his images. This bit was fascinating, the four of us looked at Dad’s PET Scan and his past two CT Scans. The PET scan was inconclusive, on the plus side there aren’t multiple growths showing, but there is one significant mass that has appeared in the past six months and at this stage it’s most likely that it is a recurrence of the cancer.
We were told there’s a 1/100 chance it’s an abscess or something else but most realistic is that it’s a tumour. Next step is for Dad to have a biopsy in the next 3wks and then they’ll decide what course of action to take. Sadly the consultant is quite clear that if it is cancer there will be no cure this time, they might operate to remove it but it’s just a case of buying time.
Dad is quite philosophical about things, he knows that without the care he received when he was first diagnosed with cancer he wouldn’t be here now. Mum was keen to point out that everything about Dad’s case has been unusual – right down to the type of cancer he has (bile duct) and his consultant readily agreed. So for now we’re holding out for another oddity, the 1 in a 100 chance but I think I speak for all of us in saying at the moment the hardest thing is not knowing what we’re facing, in the words of the great Virginia Woolf
It is far harder to kill a phantom than a reality.
Hopefully we’ll have some answers soon. Until then the good thing about a cancer scare is that it really does remind you of what is important in life – and what isn’t. It also lets you know who your mates are, and who you can rely on when the chips are down – thank you, each and every one of you, you know who you are.
Two weeks ago I had one of those phonecalls that I dread receiving. A call to my mobile, in the middle of the day, from my mum – this leads me to jump to three immediate possible conclusions – Grandad is ill, Gran is ill, someone else is ill. Trust me this is a learned response, gloomy it might be but its the result of experience – my mum would never ring my mobile during the day unless it was something urgent. A fortnight ago I missed three calls from mum, she left no voicemail and didn’t text – it turned out that she had to tell me in person; they’d received a phonecall from the hospital asking Dad to see his consultant immediately. None of us knew what that meant at the time, Dad had been for a routine scan a few weeks before but he’d spent the intermediate few weeks laying a new tarmac driveway with my brother – hard manual labour, this isn’t a sick man.
Fast forward two weeks and today is the day that we get the results of Dad’s PET Scan and find out whether his cancer is back.
Two and a half years ago my dad turned yellow, proper Bart Simpson yellow, and started itching all over – what we thought was going to be an allergic reaction or a gall stone turned out to be obstructive jaundice caused by cholangiocarcinoma, or a tumour in his bile duct, cancer in other words. I’ve written about dad’s experience here before, the first nine months and the second nine months. For the last few months cancer has been long forgotten as dad concentrated on living his life, being a new grandad and generally getting on with it.
So there are roughly three things that the PET Scan might show but to be honest all we want to know is whether the cancer is back and if it is, what can be done about it. When dad was ill last time I attended nearly all his appointments with him and mum, it proved really useful as it seemed that each one of us picked up on different points that were made – in fact at times it felt like we’d all three sat in on a different conversation! I’m not sure exactly what we’ll all hear today but I suspect I know how the day will pan out. I’ve thought a lot about it, always good to be able to indulge in some visualisation. I imagine it’ll go as follows:
My parents have said they’ll be at mine 75mins before Dad’s appointment (it’s roughly a 40min drive so 75mins is quite conservative by their standards)….except the reality is they’ll be at mine two hours before, I know they will. I can even probably guess what they’ll be wearing – they’ll have gone for smart casual so dad will have smart dark jeans on with a shirt (my dad is usually more of a t-shirt and working trousers kinda guy). He’ll be a little uncomfortable in his attire and when he gets out the car he’ll make a big show of tucking his shirt in, pulling his trousers up, squaring himself up for what lies ahead – mum and I will exchange a glance, she’ll tell him his trousers are half mast, then pull his shirt out a little and smooth some invisible crease out of it. Meanwhile she will also be somewhat uncomfortable as she’ll have shoes not sandals on and she rarely wears proper shoes these days, preferring to live in the garden where there’s no need for tights and shoes with heels! I’ll no doubt succumb to the expected pressure of making an effort but it’ll still be jeans!
We’ll all have meaningless chat on the way down, until we get to the point where we can be positive know more and comfortable silence will descend. There’ll be a (pretend) mini-competition between me and my mum to see who can see the hospital chimney from the A38 first (the small things you do to amuse and distract yourselves when making regular journeys!!!), there’ll be nowhere to park when we get there and we’ll spend a good 20mins trying to find a parking space (never know, might be lucky on that front).
Then we’ll head in. The appointment letter will be consulted in the car park to see where we’re going (even though I’d bet my house on where it is and the fact it’s the same place every time – but the letter must be checked) and then as we walk through the hospital doors mum will pass said letter to dad who’ll present it to the person on the reception desk along with an obligatory comment about how nice the weather is, or a bad-dad joke, the half funny joke of a condemned man. The receptionist will either joke along with him or be painfully efficient. If there was no time to get a letter the scribbled piece of paper, or back of envelope from next to the phone will be clutched in mum’s hands and she’ll stand guard next to dad as he recalls the details to the receptionist.
The next bit is when I always hold my breath – this is the point when the receptionist checks on the system that they’re expecting us (not always the case even when we’ve been told they are) and then trundles off to pick dad’s file out of the ones hanging waiting….except more often than not the file or the x-rays or something is missing which leads to multiple phonecalls while we go sit in the waiting area.
Mum will pop off to use the facilities (nerves do that to you) and dad and I will go around the corner, down the corridor and take our places in the waiting area. At this point I do the same thing every time, can’t help it – I scan the room. Look around, applying some warped Darwinian approach to my thinking, who looks the fittest, who looks really poorly, which carers look the most exhausted. Some days you get in to chat with someone else waiting, if you’re lucky someone has brought an irreverent kid along who’ll brighten things up a bit, except usually it’s just more waiting. There’s something very unappealing about picking up months-old dog eared magazines in an area covered with warning posters about washing hands and infection control so at this point mum (and sometimes dad) will get a book out, I might have work with me and we’ll sit and wait. In fact I’ll always have work with me, or something to read, experience has taught that you never know how long you’re going to be there.
As we sit scanning the room, and waiting to see the silhouette of dad’s consultant – I’m sure he’s nearly seven foot tall; we reminisce inside our heads, sometimes out loud. Thankful that things aren’t as bad as the times when there were no outpatient appointments, just dad struggling straight up to a ward desperate for a lie down after the journey had exhausted him.
The final bit of visualisation has a nurse calling dad through, the obligatory weight check – cue mum straining to see what the scales say and an obligatory non-funny joke between them about how much cake dad’s been eating (my dad is not a big man but he does like the odd slice of cake). Then more waiting inside a consultation room, there will never be enough chairs (protocol says you bring one person with you – even though no-one ever complains about finding another chair, not allowed to sit on the bed you see). There will be more small talk between us as we listen to the muffled voices in the next room to see if we can recognise dad’s consultant’s voice, then at some point he’ll walk in, an incredibly tall yet in no way imposing man, younger than you’d probably expect (early 40s I’d say), he’ll shake each of us by hand and appear genuinely pleased to see us.
The conversation will start with him asking how dad’s been, dad responding ‘fine’ and then who knows….the rest is not yet visualised for me. We’ve never been here before.
I’m not sure what dad will be told, what we’ll hear and what we’ll feel comfortable asking. As is nearly always the case I’m sure there’ll be no firm odds or estimates, very little firm ideas just tentative plans – or if we’re really lucky the scan will not have found cancer, or anything to worry about. The reality I guess is that each and every one of us are dying, right now as you read this, all today really does is bring to the fore that reality and the reality of our own fragility.
Photo by woodleywonderworks
One who doesn’t throw the dice can never expect to score a six – Navjot Singh Sidhu
ps Can I use this opportunity to say a massive thank you to each and every one of you who has tweeted, texted, called or supported me in the past few weeks. Particular thanks to anyone who has read or commented on my blog – this week I’m hyper aware that blogging has become my new distraction therapy so it’s really brilliant when people engage and it feels like it’s more useful than just me ranting at life. Thank you all.
This morning I had the absolute pleasure of watching my mate Kate Monaghan appear alongside Mat Fraser on @bbcbreakfast. They were being interviewed about the documentary that Kate produced and Mat starred in, Are you having a laugh? TV and disability #tvdis which will be shown this Friday night at 9pm on BBC2.
You can see Kate and Mat’s breakfast interview on the BBC website. They had the job of talking disability, lets be honest never the most popular topic, which was competing for air time alongside the World Cup, the emergency budget, Wimbledon, @beardyman, Willie Nelson and Trinny and Susannah.
What was fantastic, aside from seeing a friend talk so passionately and competently about her work, was the fact that the BBC gave them seven minutes of coverage. That might not sound a lot but I thought it was a really good interview, Sian and Charlie had obviously watched the programme, or at least seen enough of it to talk meaningfully about it and they obviously really had enjoyed it. Always a bonus.
I loved their interview and I can’t wait to watch the programme, which is on BBC2 at 9pm this Friday. Mat Fraser was an absolute gent, ensuring that Kate was brought into the conversation and his personality shone through. The person he reminded me of most, in terms of self-deferential humour, is Paul ‘I’m no Terry Wogan’ Carter whose wit and humour you can pick up on twitter @juniorc0 – two finer examples of people willing to laugh at themselves you’d struggle to find.
So the key points that Kate made in the interview, that are also I believe covered in the documentary were:
- TV portrayal is oversimplified – soaps do disability as though disabled people can only be baddies or get miraculously healed. This struck a chord and reminded me of Ann McPherson’s words at #box10 yesterday when she pleaded for normal stories – not just heroic or tragic experiences to be shared.
- “Disability is a subject that is inherently funny and we should be able to laugh at it, and we shouldn’t be scared about it and that’s what we’re trying to put across in the programme”. The discussion covered the huge progress that the political correctness movement had led to, Mat no longer being called a spastic in the street for example, but it was also acknowledged that one legacy is that some people are so concerned about saying the wrong thing that they’d rather say nothing at all.
- her own sense of discomfort at joking about disability
- her uncertainty as to Kate’s credentials to say such a thing – you see Katie Kate is an unusual case in that she doesn’t appear to have a disability, most of the time. Indeed in all the time I’ve known her I’ve never even seen her wheelchair – but it does make a star appearance in the documentary, look out for the snazzy purple number.
Mat states the need for disabled people to reclaim the language used. The conversation then turns to Oscars being given to able bodied actors playing disabled parts – Mat’s response, a quip that he is getting long prosthetic arms made so he can win an Oscar playing an able bodied person Then, when this interview couldn’t get any better, the conversation turns to Glee, you couldn’t ask for more. There is a discussion about Kevin McHale, the actor who plays Artie – but is himself able bodied. Mat and Kate explain that it probably wouldn’t have happened in the UK any more, the BBC policy is to cast to fit – “if the shoe fits or if there’s no shoe, or no leg” – brilliant.
The interview ends with high praise indeed from Sian and Charlie who state that it’s a genuinely very funny programme, that’s absolutely fascinating and not worthy or PC in any way.
Mat F signs off the interview with passing the spotlight back to Kate Monaghan ‘the future face’. I couldn’t agree more. So one final time, it’s on BBC2 this Friday at 9pm; don’t miss it.
Today I’ve been hearing about the power of stories and thinking about the validation of hearing your story told, or telling someone’s story, especially if it is likely to have a positive impact on someone’s life.
So I’m going to quickly tell my story for this week and like all good stories there’s a twist (well request) at the end!
This week I am the Director of research in practice for adults – we’re a partnership organisation, a charity, local authorities are members in our network for a (very) small annual fee and we support them to use evidence (which we class as research, service user views, practitioner wisdom) in their practice to improve outcomes for people who need support. You can learn more about ripfa on our new blog or our website. This is of course my professional role – my job, not my life – we’ll come back to that.
This week I am also a granddaughter to my fantastically impressive grandparents, who live independently still, getting up in the morning, cooking their own meals and keeping each other company, at the grand old age of 90 and 92. They live next door to my parents and get far more support than they probably realise from them, but it enables them to stay independent, saves the taxpayer a fortune and means that they are a very central part of our family life.
This week I am also a daughter to my parents, Bobby and Sylv. Today while I was at #box10 my mum was at the Stroke Clinic (following a TIA she had just over two years ago) – they’ve signed her off now, fit as a fiddle, so that was great news to come home to. I’m really hopeful things will be as easy on Thursday when my dad gets the results of the PET Scan he had last week to see if his cancer has returned.
This week I am also a friend to my mate Anna and her three year old daughter, Liv. This time last year instead of baking ginger cake for #box10 I was baking wedding cake for Anna and her husband Dan. Sunday would have been their first wedding anniversary, except Dan died in February, so instead on Saturday night Anna, her sister Tracy, Dan’s mum Mary, Anna’s friend Katy and myself will be walking 15k around Swindon to raise funds for Prospect Hospice who cared for Dan in his final weeks.
So this week, as most weeks, my life is a mix of work, family and friends – all competing demands on my time and energy, all things I care very deeply about. I’m guessing it’s the same for lots of the people I come across, I don’t really separate out my work-other life, it’s all intertwined, if I’m honest its probably all the better for it. So this is me, a difficult and emotional week, but also an inspiring and uplifting week.
Here comes the twist though – I could really do with your help. I need just over £100 to reach the target we set ourselves to raise £500 in memory of Dan for the hospice who supported him. I was thinking at #box10 today what a fantastic difference they made to Dan’s life, he fought that tumour for years, with a dignity and stubbornness that defied the odds. His is both a heroic and a tragic story, but one that was eased considerably by the wonderful individuals at Prospect and the care and support they provided for him, his family and us his friends. Please, please, please donate a pound if you can afford to – if my blog stats are half way reliable, if half of you did that this week I’d smash the target. I’d really, really appreciate it. Thank you.
Dan and Libby- May 2009
Thank you for your support. Big thanks to @markbigsw @dalekdoctor @fergusbisset@amcunningham @rufflemuffin @irishandrew @soundgirl64 (x2) @alpew @sarknight @juniorc0@jeanetteleech @hen4 @segelstrom @tomarse99, @juniorc0 @jeanetteleech @redjotter @katiekatetweets @rich_w @niccombe @laurenivory …you too could join this esteemed list of fabulously generous people
Since I posted this morning about fathers day the post has been viewed 47 times….yet not a penny donated to the walk in memory of Dan; so from that regard not a great success. In other ways it’s led to some interesting conversations with people about their experiences of father’s day and to some extent, whether life needs to be so gloomy for Liv or Daisy or I guess me if my Dad’s news on Thursday is bad.
I started blogging as a place to reflect and I’m really grateful to those people who have read the post, RT’d it, commented and most importantly discussed it with me. I’m not as naive as to think that father’s day is something that everyone celebrates, in fact before my dad got ill it would have been dismissed as nothing more than a marketing ploy of Hallmark. Actually that is pretty much what Dad said tonight when I was talking to him about it. I also appreciate that for some people my post might have brought uncomfortable memories or thoughts to the surface. At some level I’m glad about that (I’m always sat well and truly on the side of reflection being a good thing) but at some level I’m not sure that it is necessarily the reaction that I wanted to evoke.
Anyway. For anyone who has had a difficult day, for whatever reason, I offer you Timshel from Mumford and Sons. Enjoy.
This morning I’ve woken up with a heavy heart and I just can’t shake it so I thought I’d try the blog therapy approach!
It’s father’s day and to be blunt I am very grateful that my Dad is still alive. There have been many times over the past three years where I wouldn’t have expected my dad to be alive the following week, never mind the following year. So I’m considering our family to be very lucky. He came round yesterday with mum and their two dogs and I can’t believe that there is even a possibility that he could be ill again, but I guess Thursday will tell us more.
So why the heavy heart? Well the next person I thought of was someone I’ve never met! She’s a little two year old girl, let’s call her Daisy (because I’ve not had the chance to ask her mum if I can share this story), who lives over the road from my sister and her husband. The following is a conversation on my sister’s facebook feed yesterday:
Sis: thinks that one of the sweetest things she has seen this week happened when Daisy asked Steve for a cuddle over the fence, bless
Daisy’s mum: Thank you my darling
Sis: I know we both felt honoured little cutie, think Steve was a tad shocked at first seeing as it’s the first time she’s ever spoken to him I think, but reckon he felt like he’d done a good deed after xxxx We’re available for cuddles anytime hun x
Daisy’s mum: Thank you both for the good deed. Daisy is missing her daddy so much and she loves her cuddles so much. Must be boring only having me to cuddle most the time, especially at the terrible two stage. See you over the weekend xx
Daisy’s dad is currently serving in Afghanistan; they have already lost a number of lads from their company, I am really hoping that Daisy’s dad comes home safely.
Would you cuddle this man? Steve, my fabulous brother in law, and my gorgeous niece, Libbie
So the next person I thought of was my mate Anna who will be spending today with her three year old daughter, Liv, whose daddy died in February. I’ve blogged several times about Dan’s story, he died from a brain tumour in Prospect Hospice…if you’d like to know more just search for Dan and all the posts will come up. This is where my heart felt despair turns to hope, in some small way. We can’t give Liv her daddy for father’s day but we can make some small efforts so that anyone else who is in their situation will have the support they need in their final days. I’m sure there are families relying on Prospect today, who will be visiting or spending father’s day with their father, knowing that they are being supported to the highest degree possible.
Dan and Livvie last May
Next week would have been Anna and Dan’s first wedding anniversary and instead we’re walking 15k to raise funds for this fantastic hospice that provided them with support. Liv is too little to walk with us but I’ve been reassured that I’m on morning duty when she gets up on Sunday – I can’t wait For now I need your help, if you’ve read this far I already know you have a heart (or are extreeeeemely bored) so please, please, please click on one of the following links and donate whatever you can afford to help us reach our £500 target – if everyone who reads this donates a quid I’m sure we’ll be well on the way, we’re at about £300 now.
Thank you, your support is really appreciated. Big fat thank you to everyone who has already donated too – I promise there is only one week left of me asking for help then I’ll never ask for a penny again!
1) someone read it…I’m never really sure it’s humans and not just spambots who read my posts
2) they then sent me a link to their very own appearance on SOTM.
That someone is my mate Paul! You can check his photo out below and click on the photo for the proper page with more info.
Paul is one of *the* funniest men I know. In fact just yesterday he made me choke, got as far as just stopping close of snorting my drink out my nose when he tweeted the following:
If Emile Heskey is an international footballer, I’m Usain Bolt.
I mean seriously, I don’t really watch too much football, but that had me gasping for breath. If you’d like a touch of raw humour in your life then jump over to twitter and hit follow on Paul. He wont disappoint ya, he’s one funny man.