27th January : 22.20
Just a quick update to say a huge thank you to all of you who have sent messages of support to Tommy and his family. Please continue to send your kind words to tommy@weneedyounow.com.
Tommy is now out of hospital but is still very unwell. He will be having an operation to try to reduce the tumour on Thursday, but Tracey Bennett informs us that the procedure could paralyse him. After the operation, he will undergo five weeks of radiotherapy which will in all likelyhood “leave him catastrophically brain damaged” according to Tracey. It is Tommy’s only chance.
She has asked me to say a huge thank you to Mara at Phassionate, who helped the family raise an awful lot of money.
We’ll keep you updated as we hear more.
Dave xx
25th January : 00.50
Lots of news to tell you today.
Firstly, it was lovely to look through all the photos of Tommy in Florida. We were so glad to see that Tommy and his family had such a great time. Again, many thanks to all of you who helped the trip happen.
In contrast to that, we were very saddened to learn of Tommy’s deteriorating health. Only a few days after their return from the USA, he began suffering from nausea and headaches. As things worsened, he was taken into hospital on Tuesday and then taken by ambulance to Nottingham yesterday. A scan has shown his brain tumour has grown considerably in the last six weeks. Obviously the family are sick with worry and they are in our thoughts and prayers.
I’ll try to keep you all informed as things progress, but please bear in mind that this is a sensitive time and Tommy’s parents may not wish to have every detail splashed all over our website.
Tommy’s mum, Tracey, has asked me to mention someone special. She’d like to give a huge thank- you to Deborah Curran for all her wonderful support.
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Onto other matters...
As we predicted last August, the National Institute for Health and Clinical Excellence have rejected an appeal against their decisions over NHS use of bowel cancer drugs. Five months ago, they ruled that Avastin and Erbitux were not ‘cost-effective’ enough to be available to all cancer patients, despite Bowel Cancer UK and other charities describing the drugs as “the best available hope” for bowel cancer sufferers.
There was never a chance that the appeal would be upheld. As I said back in August, we first learned that NICE would be ‘very unlikely to approve Avastin’s use on the NHS’ in March 2006, before any consultation stage had even begun.
In a time where we read endless stories in the newspapers about the wasting of NHS funds, this decision is very hard to stomach.
In a letter to Sussex newspaper, The Argus, Tory parlimentary candidate Simon Kirby reveals that the NHS now has 264,012 administrators, controlling 175,646 beds. That’s three admin staff for every two beds.
The incredible size of NHS management and administration has its price; between 2004-2005 the extra cost of employing NHS administrators was £1.6 BILLION PER YEAR HIGHER in real terms than in 1999-2000.
Is the NHS in a better state as a result of that further investment? Speak to any doctor or nurse and you’ll find the answer is a resounding ‘NO’.
So with billions of pounds wasted, how many people could have been given Erbitux or Avastin?
Well, ignoring the costs of paying these extra admin staff in other years, with just the extra £1.6 billion wasted between 2004-2005, around 1428 patients could have received a four-month treatment of Erbitux.
Readers of Private Eye will be well aware of the disastrous handling of the NHS computer system upgrades, reported in the Guardian on Monday. Initially announced as a £2.6 billion project, the costs have more than DOUBLED to £6.2 billion, with many doctors and NHS staff saying that the system is fundamentally flawed anyway. The costs of the system are set to continue rising, despite costing £3.6 billion more than intended.
So how many people could be helped by £3.6 billion worth of Erbitux? Roughly 3214 cancer sufferers could receive a four-month treatment.
Aren’t you glad your taxes and National Health contributions are so well-spent?
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On a cheerier note, Su and I have managed to fix a date for our wedding. We’re having a quiet private ceremony during our Easter holiday in April. It’s only a small affair, with family and close friends only. While we’d love to have a huge ‘do’, it would be a very hypocritical waste of money after all the hell we went through last year. We’re keeping things to the bare minimum. It’s not really the done thing to hold out the begging bowl, get £44,000 from generous souls and then less than a year later, blow thousands on a single day!
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Su will be writing an update very soon. She’s doing really well and has been working hard on her degree assignments. Although she still gets a bit tired occasionally, she’s a lot better than she was when I wrote my last update.
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Before I sign off, please include Tommy and the Bennett family in your prayers. They’re going through an unbelievably worrying time and need all the support they can get.
You can send a message of support to tommy@weneedyounow.com
Love Dave xx
3rd January 2007 : 00.30
Tommy and his family are off to Florida tomorrow!
Tracey, Tommy’s mum, has promised to send photos during and after their trip, so look out for them. We really hope they have a fantastic time and all of Tommy’s dreams come true. Again, a huge thank you to all of you who helped it happen. I must mention again the wonderful Ian Beard, who has contributed so much and worked incredibly hard to provide the majority of donations sent by us. He badgered family, friends and colleagues, collected money from the public, as well as donating his own money. Every week since we began supporting Tommy’s cause, an envelope containing cheques has arrived from Ian. He’s an absolute star!
There are a few other costs the family have to meet and we will be holding a few eBay auctions (including some for valuable and rare Doctor Who memorabilia kindly donated by Ian Beard - yes, Ian’s being a total gem yet again) to help them out with that- more details soon.
How was New Year for you? Su and I had a wonderful time and the whole experience was rather emotional for us. We were very glad to say “good riddance” to 2006! What a year!
I find myself with very mixed feelings.
On one hand, I am overjoyed. Back in March 2006, when I started this website, I did not believe for one moment that Su would still be alive in 2007. Yet here she is, active and happy.
Remember folks, you made that happen.
On a selfish level, I feel relieved and exhausted. What a whirlwind it all was. Getting a donation every two minutes, going on radio stations, having journalists phoning up, dealing with threatening emails, being nursemaid to Su (who was pretty much bedridden at the time), making sure the children were happy and reassured, replying to the mountain of correspondence, staying up until 3am every night updating the website and still getting up for work at 7am every day... Goodness me, I don’t think I could ever do it again. Adrenaline kept me functioning for those few months.
Yet while I’m incredibly glad to see the back of our ‘annus horribilis’, I am filled with worry and dread as to what 2007 will bring.
Yes, Su’s tumours are stable but how long will that last? She’s been complaining of liver pains in the last week but I’ve told her it’s probably due to the excess of eating and drinking over the festive season. I hope she believes me, because I don’t think I believe myself. Although I doubt the amount she put away on New Year’s Eve helped (you should have seen her the next day!), she seems more frail than she did a few weeks ago.
Her friends and colleagues won’t see it. She’ll breeze into work, with her hair and make-up done, as though nothing has happened. She’ll dive around the classroom, giving 110% as she always does and no-one would even know the condition of her health. But I’ll see the truth in the evening, as she lays on the sofa, periodically grimacing and holding her abdomen, whimpering with pain when I cuddle her.
I noticed something today. I was up in the loft putting away the Christmas decorations and Su was passing them up to me from the bottom of the ladder. She really struggled to pass a box up to me, I mean really struggled. When I grabbed it from her, I was expecting it to weigh a ton, yet I could have lifted it with one finger - it probably weighed about 6 lbs, maybe less.
She’s sleeping more too. Every car journey we make, she spends 90% of it snoozing. Every afternoon, she goes to bed for a couple of hours. While she’s always done this (since her treatment anyway), the length of time she spends asleep is getting longer and longer.
I don’t want to depress anybody or sound miserable, but it’s a feeling that I must air in some way and you folk have always been my ‘shoulder to cry on’.
I’m not trying to sound like a bag of nerves, nor am I in ‘panic mode’, but in our situation one can’t help worrying when the slightest twinge is felt, the subtlest of differences observed.
Either way, I am incredibly lucky to be typing this. Incredibly lucky.
We didn’t think we’d get to this point intact, but here we are! Su always describes us all as a square, with her, Josh, Beth and myself each being a corner. 2007 has arrived and the four points of our square are all still in place.
Again, my wonderful friends, we will always remember you for what you did for us last year.
Hand on heart, God’s honest truth, ‘cross my heart and hope to die’: your incredible generosity and the debt we owe you is in my thoughts every single day.
I’ll sign off with what you gave us...
A VERY HAPPY NEW YEAR!
Dave xx
19th December : 17.50
Just an ultra-quick note to say a huge thank you to all of you who helped Tommy’s wish come true. It really does restore one’s faith in humanity and shows that if we pull together in times of need, so much can be achieved.
We’ll be back after Christmas with a hoard of new photos.
Until then, Su and I would like to wish you a very Happy Christmas and New Year!
Love Dave xxx
6th December : 18.45
Long time no see!
A huge apology for taking so long to update the site. Su and I have been enjoying our ‘normal’ life once more and everything else has been neglected- sorry. You can see a little chunk of our normal life on the “How’s Su?” section where you can download an extremely daft video. Back in March I did not think I would be able to video such a thing this Christmas, as without the treatment that you bought for her, she would have died from liver failure three or four months ago. I was not expecting us to be having such a happy Christmas. Again, this is all down to you and I’m so incredibly grateful to you all. Even now, nine months after the website began, the generosity you displayed is in my thoughts every single day.
I know I’ve said this a thousand times before, but updates will be a bit more frequent from now on. That’s because we’re on another mission, as you’ll read in a mo.
Su got her latest scan results back on Monday and it was lovely news. The tumours are still inactive which means another three months without treatment. She will be scanned again in March. Our ‘normal’ life continues! We are the lucky ones. Some are not so lucky.
I’ve upped the coverage on Tommy Bennett for one simple reason: the family really need your help to get the money they need.
Su and I have been so incredibly moved by Tommy’s case and if you’ve read all the details, I’m sure you have been too. It’s a tragic situation and one that we can make a little bit better.
The Bennett family have never asked for anything from anyone, yet have given so much to various charities. Now it’s their turn to be helped.
I spent the weekend doing my Christmas shopping. I wandered around endless shops with endless loops of the usual Christmas songs ringing in my ears. I managed to find some nice bits and pieces for my loved ones, although some of my lot are infuriatingly difficult to buy for. The usual thing happens; you end up buying something funny or quirky which they’ll probably use twice before consigning it to a life in the loft.
And then you read about Tommy.
How guilty do I feel? I’ve just spent Lord knows how much cash on trivial little gadgets and trinkets that will probably never be used. And all the while there’s a little lad who desperately wants something, deserves something, and he can’t have it.
I reckon, if we all totalled up the amount we’re spending on utter tat, in the name of Christmas, we’d pay for Tommy’s Disneyland trip a thousand times over.
Tommy’s mum, Tracey, sent me an email last night which moved both Su and I to tears. I had contacted her regarding a donation I received for them from a lovely generous man. She replied to say thanks and then told me about Tommy’s current situation. I have reproduced her words here with her permission.
“Tommy had a scan last week and we have had the results. The news was not good. Tommy's cancer is out of control and is not chemo-sensitive. His only chance now is radiotherapy, as further surgery is not an option given that the tumour is wrapped around two major arteries. The radiotherapy will leave him catastrophically brain damaged. The plan now is to stave off the radiotherapy for as long as possible. Tommy is going on a trial drug called Phalidamide, which you may have seen our Professor on the TV talking about recently. It may control the cancer, but it won't cure it. Tommy's cancer is so aggressive that the chances are it won't hold it but we are living in hope. We have a six week trial period and then another scan.
Mark and I are both feeling sick as dogs through worry. Its just horrendous. It makes it worse that Tommy is so well, and looks 'normal'.
Thank you again for all your help. We are desperate to get Tommy to the Kennedy Space Centre - he has seen piccies in the Virgin Travel Brochure and is mad on the space rockets!”
And then I overhear children casually talking about the Xbox 360 they’re getting for Christmas. Or the Sony PSP. Or the iPod. Not hoping for but getting. A done deal.
I urge you- instead of spending another fiver on the already-spoiled kids or wasting a tenner on a mildly amusing but essentially useless item for the relatives, give that cash to Tommy.
It’s so unfair that while many children live in a world of “I want” and “I’m getting”, there are children like Tommy who are thinking simply “I wish”.
You can make that wish come true.
Love Dave xxx
28th October : 01.00
Quick update - I notice that a few photos of Tommy have been bought; huge thanks if you were one of those people. I’ve updated the link to the Bennett family’s latest eBay listing for him. Please please please support them and help Tommy have his treat. Instead of buying a DVD or that extra round of drinks on Saturday night, pop onto eBay and buy a snap.
If you’re not an eBayer, you can send any donations to us and they’ll be forwarded to the Bennett family straight away.
Cheques or postal orders made payable to Mark Bennett can be sent to:
Dave Woodley, Ham Wharf House, Ham, Creech St Michael, Somerset, TA3 5NZ.
We’ve had one donation by post already, but more would be most welcome!
Dave xx
11th October : 01.00
It’s been such a long time since the last update. Major apologies!
Why have we disappeared for so long? Well, quite simply, we’ve rather been enjoying the normality of life once again. It’s been absolutely wonderful for Su to get back to work and have her old routine back again. She’s loved it and it’s been a marvellous break for us all.
But back to business.
Today I received an email from someone who finds himself in the same position as we did back in March of this year. A relative of my correspondent is suffering from multiple myeloma and would greatly benefit from a drug called Velcade.
YET AGAIN, this treatment is not available on the NHS, despite the family concerned submitting an appeal against the decision of their local NHS trust.
The family is being forced to find the costs from their own pocket- £60000. This huge amount is a very difficult sum for them to raise and we’ll be trying to offer as much assistance as we can in their campaign. I’ll keep you posted on any developments.
Su’s updated her diary this evening and it’s available on the “How’s Su?” page.
Finally, please take a look at the brave boy on our front page. Tommy is seriously ill with an incredibly rare cancer. He’s been told he has only a few months left to live and his parents would dearly love to take him to Disneyland.
We were extremely moved by his story and I urge you to give all you can to this worthy cause. Any doubts about how genuine it is should be allayed by the fact that they have another appeal on justgiving.com, one of the UK’s leading charity donation sites.
Another update in a week’s time.
Love Dave xxx
9th September : 21.00
Sorry it’s been so long since the last update.
Su got the results of her second scan last week and although the tumours have not shrunk, the combination of Avastin and 5FU treatment has rendered them inactive. They are not growing, nor can the cancer spread.
Obviously, we want to reduce the tumours to a size where they can be surgically removed. Avastin, Irinotecan and 5FU was our Plan A and the combination of Avastin, Oxaliplatin and 5FU was Plan B. They’ve done a good job, but not the job we want them to do. We’ve had a Plan C (a drug called Erbitux) for some time and that will be our next step. However, as with Avastin, Erbitux is not available on the NHS and we will have to pay for it. Thanks to you, we’ve still got just over £20000 left in our funds, which will pay for the treatment.
While the tumours are inactive, our oncologist said it was a waste of money to plug away with the treatment at this present time. He recommended that we wait until the tumours become active again before starting the course of Erbitux.
To monitor the tumours, Su will be scanned every three months. If the tumours are the same size, then we wait another three months and she is scanned again. This schedule will continue until the tumours become active. Should we find they have come back to life, then Su’s treatment of Erbitux will begin.
So until then, Su’s got an extremely welcome break from treatment. She had her last chemotherapy just over 3 weeks ago and the PICC line has been removed from her vein. Over the last fortnight, she’s slowly become her old self and all the nasty side-effects she’s suffered for the last six months have all but disappeared. She is beginning to put weight back on. Her sleep patterns are back to normal, with Su only requiring an occasional quick nap. She’s back behind the wheel of her car and is loving her independence. Her appetite has returned and she is now able to enjoy food, rather than having to force it down, as she had done during her treatment. She’s also returned to work on a voluntary basis.
Of course, it’s wonderful to see Su back to her old self and enjoying life once more. However, we have had to face a few nasty facts.
Her odds of surviving this cancer are becoming very slim. Of course there’s always a chance and we’re not giving up, but it is foolhardy to ignore the probable outcome. It is only a matter of time before the tumours become active again and the chances of Erbitux doing the job are quite low. The tumours could take years to wake up; on the other hand, they could take a few months. We’re back to the waiting game again.
Nevertheless, we’re going to enjoy the next three months and we’re treating it as a welcome break. Su’s added her thoughts on How’s Su.
I’ll keep you all posted.
Love Dave xx
21st August : 23.00
A BITTER PILL THAT’S HARD TO SWALLOW
As reported in today’s media (CLICK HERE to view Daily Mail article), a shocking verdict from NICE today means heartache and misery for thousands of cancer sufferers in the UK.
The National Institute of Health and Clinical Excellence has deemed Avastin and Erbitux to be too expensive and not “cost-effective”.
So how do they work out whether a drug is cost-effective or not?
They measure in “life-years” and have set a limit of £30000 for one “life-year”. This means that if a drug is found to prolong a patient’s life for a year, it must not cost more than £30000 during that period.
Su’s treatment of Avastin, 5FU and Oxaliplatin will have cost between £45000 and £50000 when she has completed the course. According to research, Avastin prolongs a life for an extra five months. The NICE say that due to the average extension of life being this short, the drug is deemed to have a ‘life-year cost’ of £56628; way above the £30000 threshold.
Let’s look at some differing viewpoints on this.
The NHS is not a bottomless pit and is already stretched beyond its financial limits. Giving a cancer patient £56628 worth of medication is a big commitment and if the patient then dies within the first five months, it is only right that questions should be asked about whether that money could have been more effectively used; giving a heart bypass operation to someone who’s been on the waiting list for 18 months, for example.
However, life isn’t as simple as averages. Yes, the average extension of life with Avastin is five months but that ignores the patients at either extreme of the scale. Some patients are given months to live, yet die within weeks. On the other hand, in December 2005, Lynn Novak from West Sussex was told she would be dead by June 2006 and yet she is still with us and her tumours are responding well to the treatment.
How can we gamble with people’s lives? How can we look someone in the eye and tell them they are not ‘cost-effective’?
When Su was first diagnosed with cancer and we began to find out about Avastin, we were warned “don’t believe all the hype you read in the papers”. This was wise advice.
They’re not the ‘wonder-drugs’ people are led to believe. Indeed, the breast cancer drug Herceptin will only help 1 in 18 patients. The Sun and Daily Mirror didn’t put that as their headline, did they?
BUT!
How does a patient know whether they are that elusive 1 in 18? How can they possibly not try Herceptin, just in case they are in that minority?
And it’s the same deal with Avastin and Erbitux.
Yes, it may only give real benefits to a small percentage, but when you’re faced with death, anything is worth a shot. Trouble is, if you haven’t got a stack of cash in the bank or some incredibly generous caring friends from all over the world (that’s you!) then you’re stuffed.
We feel incredibly strongly that the decision made by the NICE was the wrong one. We understand the financial problems involved but one cannot put a price on the chance of life.
When I was a little boy, my Gran used to sit me on her knee and say “you’re worth more than a million billion pounds, we’ll never be able to get another you.”
It’s easy to say “sorry but the NHS just can’t afford it” when it’s not you with the grim reaper following six paces behind you. If it was your mum, you’d feel a hell of lot differently. If it was your child, you’d be screaming from the rooftops.
Another thing that bugs me is although over £30000 for a potentially life-saving drug is not “cost-effective”, a sex-change operation costing £15000 for a criminal convicted of attempted murder and kidnapping apparently is.
So is forking out £70000 for a boulder to adorn a hospital’s main entrance.
£50000 for an art sculpture is obviously a bargain buy too.
As is spending £15 million on relocating a casualty unit to a location 9 miles away and then moving it back after 12 months.
£15 million not enough for you? How about an estimated £200 million spent on management consultants (who, according to former health secretary Frank Dobson are ‘seldom value for money’)?
Even creating the 46-word-long “Patient Experience Definition” cost £40000.
Those are just a few examples; there are countless more. Read what Dr Paul Miller has to say HERE.
Today’s decision from NICE is not final - there is a period of 15 days for the interested parties (cancer charities etc.) to appeal. Public opinion is not consulted at any stage.
Back in March, we were told by sources within the NHS that Avastin would “never be available on the NHS” because it’s simply too expensive. We had a tip-off in June about the announcement made today by NICE. The cancer charity Bowel Cancer UK contacted us, asking us to write a letter of formal protest to be included in their appeal package and we were more than happy to do so. You can read our letter in Microsoft Word format by clicking HERE or in Adobe Acrobat PDF format by clicking HERE.
Sadly, I don’t think the ruling will be overturned. The decisions were made a long long time ago.
11th August : 17.00
Our eBay auctions have raised £115!
They were great fun too, with lots of daft questions emailed about Geoff the Cyberman. A big thank you to everyone who placed a bid and spread the word.
We won’t be doing any more fundraising for us now- that’s the last.
Of course, I’ll carry on selling stuff on eBay, but that’ll be a normal private thing and not publicised anywhere.
I am currently in talks with various parties, concerning the future of this site. Things are now moving in the right direction and you may find a change of website address happening in the next 3 months (or perhaps longer). I can’t say any more at the moment but I’m very excited about the project.
In the meantime, I’ve put three causes on the main page, that I’d really like you to look at.
When children are seriously ill, it must be unbearable for all concerned. When I was a student, I was a choirmaster and every December we used to roam around Exeter singing carols and collecting money. The cash was always donated to the Children’s Hospice South West and when I dropped off the money to the charity, I usually visited a lady who worked at the hospice (based near Barnstaple) but lived in Exeter. Once, however, I had to take the money into the hospice itself and so I bussed up to North Devon. While I was there, I was given a little look round.
I met a lovely little lad (about 4 or 5 years old) who was getting very excited for Christmas (which was about two weeks away) and was busy telling the nurse and myself what he was hoping for from Santa. After a brief chat, we left the child with his family. As we walked away, the nurse whispered to me that it was highly unlikely the boy would be alive on Christmas Day.
That’s just one child and there are thousands more.
The charities listed on the main page do whatever they can to help sick children and to support their families. Please support them in whatever way you can.
Love Dave xxx
31st July : 19.00
Long time no see!
It’s been 22 days since we’ve had an update on the site, but this was deliberate. I wanted everyone to see our fantastic news.
So what’s been happening since the 9th July? Well, we’ve had more donations to add to our fund.
Firstly, six students and two members of staff took part in a cycle ride along the canal, from Bridgwater to Taunton (and back); quite a distance. They managed to raise the excellent sum of £149! A huge thank you to all concerned.
Also, Mick Taylor and all the wonderful folk at Six Acres Resource Centre in Taunton held a number of events for us. Firstly, Mick took part in the “Tour Of Wessex” cycle sportive and cycled 300 miles over a few days. He told me it was an unbelievable experience; I can only imagine the amount of effort and hard work it took; I wouldn’t be able to cycle 50 miles, let alone 300. Also, the staff at Six Acres organised a coffee morning for us and held their usual ‘bonus ball’ sweepstake in aid of us. Together they raised the fabulous sum of £471.73!
Mick Taylor (far left), me (far right) and a few of the adults at Six Acres.
I went to visit them on Friday to accept the cheque and meet some of the adults they work with. Six Acres is a centre to help adults with learning disabilities. I was given a wonderful welcome by all and it was a pleasure to meet everyone. Hopefully, our picture will be in the next edition of the Somerset County Gazette and the Bridgwater Mercury. A massive thank you to everyone at Six Acres!
You may have noticed from our front page that we currently have some auctions on eBay. Some may have ended by the time you read this, but please check the link to see if there’s anything which grabs your interest!
“So if you’ve reached your £44000 target, why are you trying to get more money?” I hear a few of you cry.
Well, when someone comes up to you and says “we don’t want this anymore, could you make use of this”, you don’t say no!
We’ve been given quite a few bits and pieces by people and we’d be mad not to eBay it, to help with the ever-rising costs of Su’s medical bills.
One must bear in mind that the £44k covers the Avastin and £4k of the medical bills only. So far we have paid just over £5000 in consultation fees, blood tests, CT scans, x-rays and so on. A 5 minute consultation with our oncologist costs £150. An x-ray costs £671. Blood tests cost £121. When these are being done on a weekly or monthly basis, that soon adds up.
I thought we’d be able to cover the costs of all that ourselves but it’s looking a bit tight, especially now British Gas have decided to virtually double our bills. We’re off to www.uswitch.com to sort that one out!
Anyway, what you lot want to know is: how’s Su?
She’s okay-ish, but her side-effects are very unpredictable. She’s had a rough time over the weekend and at the beginning of last week. Constant nausea and stomach cramps have left her bedridden for most of last week. There’s just no pattern to it.
Besides that, she remains cheerful and upbeat. The children went away with their Auntie last week and had a wonderful time. Su and I had a lovely few days together, just the two of us in peace and quiet! It did us both the world of good.
Anyway, updates are back to normal now. A new one will appear every 3 or 4 days so keep popping back!
Love Dave xxx
9th July : 21.00
WOW! YOU’VE DONE IT!
We’ve hit our target of £44000. It’s taken only four months and eight days, and what a rollercoaster ride it’s been.
There are thousands of ‘thank you’s needed but I’m so scared I’ll miss someone out! There have been so so many of you who have helped us with our appeal, either by donating, organising events, fundraising on our behalf and doing sponsored events.
So to avoid leaving anyone out, I’d simply like to say a massive thank you to you all.
Also, I’d like to say a huge thank you to those of you who have given us emotional and spiritual support. Either in person, by sending emails, letters or cards as well as phone calls. We’ve had some wonderful words written and said to us over the last four months and they’ve made us feel very warm and loved.
I was dreading writing this update. I have so many emotions about reaching our total, so many things to say but simply can’t find the words.
So I’ve put together a short video which I’d really like you to watch. It basically sums up my feelings about all of this.
There are three files available- a lower, medium and high quality version of the video. Please choose the highest quality one you can, otherwise the picture quality tends to suffer.
If you’re on Broadband, the highest quality version will take only a few minutes to download.
Right-click on the files below and select “Save Target As” or “Save Link As” to save it to your computer. You can also just left-click on it to view it, but the video may stutter while it is still being downloaded.
HIGHER QUALITY - MEDIUM QUALITY - LOWER QUALITY
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So what happens with the site now?
I’ve discovered another cause to champion! And you’ll find out about that soon.
For the next week or so, the site isn’t going to be updated as I want to make sure that all our regular visitors get a chance to see the good news.
A huge thank you to every single one of you. This has been quite an amazing experience. Four months ago I was lost and desperate, not knowing what to do and feeling completely paralysed.
But you changed all that. Now we have hope.
Love you xxx
9th July : 21.00
A Message From Su
Finally, finally I get my turn!
I have been bursting to write this for 4 months, which apparently is how long the website has been online but every time I begged Dave to allow me to put my side forward he’d say “wait until the end”.
So here we are - the end. We have reached our target. So here I am now in a position to have my say... But what can I say?
My friends within work and out have heard this so many times already, they’re probably cringing as they plough through my painful ‘thank you’ again! My stock line is the utter frustration I feel at our pathetically inadequate English language - how can I simply say ‘thank you’ after everything that all of you have done?
‘Thank you’ - 2 little tiny words that can in no way compare to the enormity of emotion I feel. How can ‘thank you’ truly reflect my gratitude for donations varying from £1.25 from a school child’s pocket money to 3-figure gifts from complete strangers in New York or people closer to home that wished to remain unmentioned? And to top it all, 4-figure donations from others who wished to remain nameless, but they know who they are!
It goes without saying that it’s not the size of the donation, but the love and thought behind it. Plus the craziest ways in which funds have been raised: from football matches to walking around Burnham badgering passers-by!
Family and friends giving up their valuable weekends to help when they have their own jobs and homes to juggle in their hectic lives. How can ‘thank you’ repay all that?
I have cried a few tears when first diagnosed, before Dave’s brain-child of a website was devised and when the future looked bleak, it looked like there wasn’t going to be one at all.
But over the last four months I have cried so many tears- and they’re all ‘happy ones’. Tears brought on by so much love and support shown by you all.
The abundance of cards, letters and emails that can’t help but make one feel so humble; but again the frustration that I can’t give anything back.
I can’t thank you enough - all of you. After all, you have given me a chance at life - the single biggest thing we hope for.
There are no guarantees with my treatment but thanks to all of you I have a chance, which four months ago, I didn’t have.
Thank you all so very, very much.
Love,
Su.
3rd July : 20.30
A tiny teeny-weeny update tonight, just to let you know that we’ve got some marvellous news that we’re saving until the weekend.
All will be revealed on Sunday night from 9pm GMT.
Bye xxx
30th June : 22.00
A tiny update tonight.
A HUGE thank you to everyone who’s sent us cards and emails congratulating us on our engagement. We’ve really been touched by the words you’ve written. As always, we’ve received messages from people we know and people we don’t, but all of them from friends. That’s how we think about it.
Su’s been quite well this week, although she’s still been suffering badly from fatigue. No nasty side-effects from her treatment though.
The above photo was taken in my parents garden on the way back from Port Isaac on Sunday. My parents were surprised and over the moon with the news of our engagement.
We’d dearly love to have our wedding this year, but it’s going to be a job finding somewhere for our ceremony. We don’t want a church wedding but we don’t want some anonymous registry office either.
Our friends Katie and John had a fantastic wedding last year. The whole thing took place at a lovely big hotel in the middle of a golf course. The ceremony took place in the massive conservatory, then the reception was in one of the many dining rooms. It was intimate without being claustrophobic, personal without excluding people and was just so darn right. And that’s what we’d like.
Anyway, I’m waffling. I’ll update you again soon.
Bye xxx
25th June : 15.00
Great news!
Last night, in Cornwall, I proposed to Su and she accepted.
We went on a quick weekend break to Port Isaac, a little fishing village on the north coast. The break did Su and I the world of good.
After a lovely day visiting different places and a fabulous meal on the harbour front, I took Su up to the coastal path and proposed to her. It was very sweet and romantic, with the gentle breeze blowing and the sound of the waves crashing beneath us.
Su’s engagement ring isn’t staying with us for long. The jewellers didn’t have one in Su’s size but we really wanted something to take away with us to show. So we’ve got the oversized one to show off for a couple of days and then we return it to our local branch, order the same thing in Su’s size and it arrives within 8 days.
I’ve made a page all about our little trip, with lots of photos and videos. You’ll need Windows Media Player to play the videos (not Quicktime as I previously said) as the files are in WMV format.
CLICK HERE TO SEE OUR VISIT TO PORT ISAAC
22nd June : 00.30
A very quick update tonight. Just to say, our story is in the current issue of “The Weekly News” and scans are available in our Media section. Be warned, they’re big pictures so if you’re on dial-up for your Internet connection, you’re better off going out and buying a copy!
Su is okay but very fatigued. She’s very achey and sore - she describes it as the kind of niggling pains you get with flu. She’s been sleeping a lot over the last few days. Also, her hair has started to rapidly thin too. She’s fine other than that and remains her usual cheery self.
I’m taking her to Cornwall this weekend to our special place - Port Isaac. It will do her the world of good to get out from these four walls.
Since she stopped working, Su’s barely been out of the house. Apart from hospital appointments, the (few) times I’ve been able to get her out shopping and the odd visit to a friend’s house, she’s been effectively housebound for the last six months.
A bit of sea air will be just the tonic.
Before I disappear into the cyber-ether, a huge hug and thank-you to Margaret, a fellow TA from our school. She did a fundraising event for us and raised £345 for us, which has left us within touching distance of our target.
A huge update will appear on Sunday afternoon at 3pm. I’ll have a ton of photos, a few videos (which will require Quicktime player - download it from HERE if you want to be ready!), plus some fantastic news. Nope, I can’t even give you a clue, but all will be revealed on Sunday evening!
See you soon x x x
13th June : 01.30
A bit of a late update this one - I can’t sleep.
As I said in my last update, Su had a black day a few days ago. Now it’s my turn.
As we come ever closer to hitting our target, I can’t help but feel as though this was all a token gesture, a selfish way to make me feel as though I was doing something, rather than sitting around feeling helpless.
The first scan showed that the tumours hadn’t shrunk. What if the next scan shows the same? What words of comfort can I then give Su? How will I be able to keep up the ‘brave face’ for the kids when all I want to do is fall down and weep?
I’m sorry if this seems as though I’m being overly depressive but I can’t help it. I just feel really down and so bloody angry.
We only got together properly in April of last year when we bought our house together.
I keep chastising myself for not doing it sooner. I was going through a weird thing in my head; trying to ensure that I was ‘okay’ with settling down with Su and the kids. My dilly-dallying cost us time; in hindsight, very precious time. We’d had barely 4 months of happiness together and making plans, before this cancer crap kicked off.
That’s why I feel so angry tonight.
Why is it that the scum that live just up from our road can take countless drugs, create anti-social noise 24 hours a day, stagger around drunk, puking over the pavements, get various girls pregnant with God knows how many kids already in tow, sponge off the state, never work, pick up their giro and still walk about, healthy and well as ever? How do they get away with it? Why doesn’t this kind of gut-wrenching, emotion-bleeding, heart-breaking shit happen to them? WHY?
When I’m feeling down, it’s the ever-recurring question in my mind - why us? Why did it have to happen to us? To a mother of two children who need and dote on her? To a couple who had only just begun their time together? Why were we denied our chance? What the hell did we ever do wrong to deserve this?
It makes me SO livid and bitter and begrudging and... I won’t bore you with the rest of my thesaurus of negativity.
I don’t just feel angry for Su, the children, or for myself, but for YOU. You’ve all worked so damn hard to get us the money we need, to get us the medication, to give Su a chance.
The folk that did our Bridgwater Town football match, the guys that did our eBay auctions, Mitch Benn, the Hale family, Jamie and Tina, Ryan Mogg, the kids football match, all the people who’ve donated so much money online, the car boot sales, coffee mornings, jumble sales, the Fun Runs, Triathlons, Marathons, the Race For Life, the sponsored walks and sponsored cycles, the children at school who bring me in envelopes and bags containing the last bits of change from their money boxes, the notes and cheques that arrive in the post from people who leave only their first name and no address, the folk that emptied every last penny from their pocket in the Cross Rifles pub a few weeks ago and everyone else that’s donated in whatever way - sorry if I haven’t namechecked you, I’m just typing off the top of my head.
You’ve all given so damn much. We’ll never ever be able to thank you enough.
I’ve come to a decision in the last week and it’ll be a nice bit of good news. I can’t say anything yet but it’ll appear on this very page, hopefully within the next fortnight.
Apologies if I’ve depressed the living gubbins out of you, but I’ve never been a liar. If I’m happy then I type happy, if I’m sad then I type sad. I’ll feel better tomorrow.
Argh! Tomorrow! It’s already tomorrow! “Time for bed” said Zebedee.
Thanks for listening folks. After talking it through with you, I feel better about things already. Can you see how you do me good? Do you understand what a vital part of this whole process you are?
You’re special. I love you.
Night night x x x
7th June : 18.45
We’ve had some extra donations for our fund today. Our school raised £500 for us from the recent fun run. Massive hugs and thanks to everyone!
Also, the kind folk at Bridgwater Fire Station have donated £100! A huge thank you to you all!
This latest batch of donations means we have only £978 left to raise.
Su received her first ‘new’ treatment yesterday. So far, the side-effects haven’t been anywhere near as bad as the ones she’s suffered so far. Her energy levels are up and she hasn’t suffered any nausea or diarrhoea either.
Also, at the weekend I was able to take her out to the pub for a drink, which is something we haven’t been able to do since last October. We both spent Sunday rearranging the lounge and putting in a new sofa (not ‘new’ but given to us by our friends Carolyn and Rob).
Despite her physical boost, she had a very black day on Saturday. The children were with their father for the night and once they were safely out of the way, Su had a good cry in the afternoon. It’s only when the kids disappear that you realise how much of a brave front you’ve been putting on for them. We had incredibly hard chats about our uncertain future and talked about hypothetical arrangements “in case the worst happens”.
I cannot tell you how difficult it is for us to talk to each other about such things. Every sentence uttered brings a lump to the throat and every decision made summons a tear from the eye.
Since the weekend, Su’s become a lot happier and positive; she wants to try everything she can to kill off her cancer, so we’re looking down every avenue. Homeopathy, herbal etc.
I’m finding things more difficult to deal with. When I was fundraising heavily, it was a great distraction. Now we’re so close to our target and the ‘big events’ have all passed, there is far more time to think and reflect. The slightest thing can set me off - seeing people in the street hugging their kids, songs on the radio, photos around the house and so on.
Since Su’s cancer was first diagnosed, I’ve started to look at the world in a new way, a philosophical light. I’ve never been very materialistic anyway, but it’s truly brought home to me what the important things in life are; love, companionship, family, devotion, joy and hope.
Before I leave you, a little word of warning - it’s not a moan, just an explanation.
Every day, I am asked by so many people how Su is. That’s lovely, really great; it’s wonderful that so many people care about her. But please bear in mind that from the moment I get up, I am dealing with Su and her condition; from getting her medication when I get out of bed, driving the kids to school (with them asking me awkward questions about Mum), then getting to work and being asked continually about Su and saying the reply I’ve used 100 times already that day, then finishing work, driving home with Bethany (more questions) and finally walking in the front door, where I’m straight back into the carer role again. It’s 24 hours a day, 7 days a week and bloody depressing.
So when you ask me how Su is, please don’t be offended if I reply with a somewhat tired tone. I wouldn’t be rude to anyone, of course, but it’s very hard to maintain the facade of cheerful positivity all of the time. Please remember that you’re probably the 50th person that’s asked me about Su.
Sometimes I just want to put it out of my mind for a few hours and being constantly reminded about it can become a little wearing.
It’s difficult to forget as it is. For example, on Friday the children were watching their favourite TV programme. Su has a running joke with them, where she always sings over the opening theme in a horrendously out-of-tune voice, while the kids scream at her to be quiet. On Friday, Su did her usual performance and the kids shouted their usual responses.
Without thinking, Su said “Ha! You’ll miss my singing when I’m gone.” Her face dropped when she’d realised what she had said.
Josh and Beth instantly grabbed their mum and hugged her as hard as they could.
It was the most moving sight I’ve ever seen.
Love and hugs to all of you, for your donations, kind words and endless support. xxx
30th May : 13.15
There’s good news and there’s bad news.
Bad news first - the tumours in Su’s liver haven’t shrunk in size, which means that surgery is not yet an option.
Right, now that’s out of the way, let’s get onto the good news.
Su’s blood shows that the tumours are much less active than they were. Our oncologist said that her ‘tumour profile’ (I may be using the wrong terms) was down from 700 to 200. What these numbers are measured in, Lord only knows. So at least the cancer isn’t spreading. Our oncologist’s words were ‘the cancer’s been stabilised and it’s under control’.
While the tumours haven’t shrunk, I was relieved that they hadn’t grown. Dr Falk said that although they were the same size, they were ‘more defined’. He said that on the last scan the tumours had a blurry and blobby edge around them; now they have a definite edge.
Our main problem is one tumour that is sat right on top of a major vein. It can’t be removed as Su would not survive the massive bleed that would result. I’m not 100% sure but I think it’s on the hepatic vein.
This is the little sod we need to get rid of; the other tumours are not as much of a worry. The liver cannot be operated on until that tumour shrinks away from the vein or becomes less of a surgical risk.
So we have a slight change to our plan of action.
Currently Su takes 3 different treatments. The first is 5FU, the main chemotherapy treatment. In addition to this, she has Avastin (the one you’ve all paid for) and Irenotecan. These last two drugs serve to make the 5FU more effective.
From next week, Su will still be receiving the 5FU but we’re swapping the Irenotecan for a drug called Oxaliplatin. It is designed to interfere with the growth of cancer cells until they are eventually destroyed. Su will continue to receive Avastin, which will hopefully benefit the Oxaliplatin’s performance.
Su and I are a bit downhearted. Although it wasn’t disastrous news, we both felt a bit flat. It’s only natural to have high hopes in a situation like this and if they don’t come to fruition then one tends to feel a little let down.
However, we’re just moving onto Plan B; that’s the way I look at it.
There remains a hard battle to be fought and we’re still up against the odds. Dr Falk said Oxaliplatin only has a 30% chance of working, so get those fingers and toes crossed.
Bye xxx
27th May : 13.30
Good grief! I hadn’t realised that it’s been eleven days since the last update- apologies.
A huge update today; there’s TONS to tell you.
Firstly, Su’s first CT scan took place on Tuesday and we’re busy biting our nails down to the cuticle until we get the results next week (30th). I’ll do a quick update on Tuesday night to let you know the details.
I was in the local paper again, accepting the cheque from the Hale family and the last of the funds from our Cross Rifles v Huntspill footy match. A scan of the article is in our Media section. If you recognise any of the quoted stuff from me, it was taken from this very site! The guys at the Mercury phoned me to ask if I wanted to say anything different from what was on this update page, but I thought it seemed like a waste of their time for me to basically paraphrase what was already in black and white. The only problem with that is the phrase “It ain’t that simple” was in the article, and now I must seem like a right dimwit to their readers! The primary school teacher says “it ain’t that simple”. Guv’nor, apples and pears, me ol’ missus is a bit Tom Dick, roll ahhht the barrel etc etc.
Anyway...
Our great friends Derek and Carol from school completed the Taunton Deane Triathlon for us and I’ve got some pictures. I won’t put the ones of them in their swimming gear on here (although I was sorely tempted!) but here they are looking fit and energetic. The photos are taken from a company who sell photos of athletic events and these are the ‘preview’ pictures, so apologies for the red writing slapped all over them!
They’ve both worked so hard training for the event and did really well. A huge hug from both of us for all your efforts.
A big thank you to two of our work colleagues, John and Gill. They raised some money for us in our school fun run. Thanks to everyone who sponsored them, including Milford Infant School in Yeovil.
This week, I was presented with the cash raised by the East Bower Under 11s v Mums Select XI footy match. They raised the fantastic total of £420 and the team handed over the cash to me on Thursday. A huge thank you to all the children and adults involved. Here’s a snap.
There’s a new gallery of photos from the match in our Events section. Also, I’ve put together a short video of highlights from the match, but it’s probably only suitable for those of you on broadband; if you’re on dial-up, it’ll take an age to download. Two versions, depending on your connection speed and/or patience! Click on your preferred choice (or if you want to download and save it, right-click and select “Save Target As” or “Save Link As”).
HIGHER QUALITY - LOWER QUALITY
We’re going to be a national paper soon. “The Weekly News” is going to be interviewing me next Wednesday and we should be in there the following week. The photographer Barry came today and take a load of pictures. He was a really nice guy and put us both at ease. It was like a wedding photo session, with lots of “looking into each other’s eyes” type of shot and at one point I even kissed Su’s nose! We looked through the photos before Barry left and they looked good. Su looks lovely in them; I look like a bag of spanners.
This week I heard from a lovely guy called Mick Taylor. He’s doing the Tour Of Wessex cyclosportif this weekend for us, having got £200 worth of sponsorship pledges! What a star.
I have to admit, I hadn’t heard of the event before now and I’ve been doing some reading about it on the British Cycling website. Boy, does it look a tough job! Good luck Mick, hope you emerge relatively unscathed at the end!
Right, that’s it for me today. I’ll do the next update on Tuesday night, when we know Su’s test results. Keep your fingers crossed for her.
Bye xxx
16th May : 23.30
Last night was our last ‘big’ fundraiser and has boosted our fund by £200!
I was a right bundle of nerves. Firstly, Mitch Benn phoned to tell me there’d been an accident on the M4 and he was stuck in a 4 mile tailback moving at walking pace. It was clear he would be arriving late.
Then by 8.30pm, we had about 30 people in the hall and it was obvious that we weren’t going to be getting any more. I was a bit disappointed as I’d expected at least 50. There were quite a few folk who had told me they would be attending, and then didn’t show.
However, it’s by things like this that you learn from your mistakes. Firstly, having it on a weekday evening didn’t help, although Mitch is a very busy guy and is solidly booked for weekend gigs for the next year, so could only do a weekday. Secondly, perhaps it wasn’t advertised to the right people. I did the usual posters and flyers, got onto the radio and I even posted it onto several comedy websites. But I can’t help feeling that if we’d put it on in Taunton, where there are regular comedy gigs at places like the Brewhouse, we’d have drawn a bigger crowd as the audience is already there.
Never mind. Mitch arrived just after 9pm and then treated us to a hour of absolute comedy gold. We may have been a small audience, but it sounded like there were 200 people laughing. What an absolute star he was.
After all my nerves and disappointment, I really enjoyed the evening and everyone else did too.
A big hug to those who came (and to the mystery people who put a load of coins into our bucket on the bar).
A huge thank you to Mitch Benn, who travelled all the way from South London to entertain us (for no charge whatsoever) and then had to travel all the way back again. What a saint. Su and I are incredibly grateful.
Anyway, that’s it for a bit. Getting these things organised has really taken its toll on me and I’ve got to take a rest for a while. There are other things in the pipeline though, as I’ve had some very generous offers from various people.
Su has had a sleepy day today, but she’s still had a very good treatment this time. No nausea, just a lot of fatigue. She had a very good weekend and was almost her normal self.
That’s it for tonight, I’ll update again in a couple of days.
Night all xxx
14th May : 22.00
Ultra-quick update tonight!
If you’re hoping to come to our comedy night on Monday, but are stuck on how to get there, here are some directions.
Firstly if you’re in Bridgwater, our venue is on Bath Rd, directly opposite the entrance to College Way, where Bridgwater College is.
If you’re coming from outside Bridgwater on the M5, it’s probably easiest to leave the motorway at Junction 23. Take the exit for Puriton and follow the road for about a mile. You’ll go up a hill, then down the other side. Keep following the road until you reach a T-Junction. Turn right. You’ll go over a motorway bridge (with some annoyingly slow roadworks on), then you’ll pass an Esso garage on the right. Keep travelling ahead and you’ll soon pass Parkway (on your left) and the entrance to the Cellophane factory (on the right). After a while, you’ll pass a small newsagents on your right and at the end of this row of houses, you’ll find the Bridgwater Sports and Social Club. Turn right into the car park.
If that was confusing, here’s a link to Google Maps. Our venue isn’t shown on any maps, but it’s directly opposite College Way.
£5 entry, doors open at 8pm. If you come early, you can always pop into the main bar for a drink.
I’m really looking forward to seeing you all there. It’s going to be a great night.
Bye xxx
12th May : 18.30
A quick update just to say that my interview on Somerset Sound this morning has been added to our Media page. A huge thanks to Vic, Alex and the lovely lady I spoke to on the phone (sorry I’ve forgotten your name!).
11th May : 23.30
A very quick update tonight.
Sorry if I made a few of you cry with the last update! I’ve had loads of people telling me off in the last few days for making them use up the last of the Kleenex!
A few things to tell you about. Firstly, my lovely friends and colleagues Derek Nevell and Carol Sheehan from my school are doing a triathlon in Wellington for us on Sunday. They’ve been working hard in their training and have got tons of sponsors too. Hopefully, there’ll be some photos of them on the site very soon.
Also, a very good mate of mine from my days at university, Rob Watts, ran the London Marathon for us. He managed to raise £600 for us, either via direct donations on the site or by sponsorship. I’m hoping to get a few pictures of him on the site too. He’s a superb runner and got round in 2 hours and 33 minutes. Overall he was placed 93rd, which, in an event of that scale, is one hell of an achievement. He’s a journalist and you can read his stuff in the Sunday Telegraph.
Last Sunday, three families whose children attend our school did the Race For Life at Weston for us. I’ve got some photos on their way to me and they’ll appear on this page soon.
Also, a big hug to Jack from class 6S, a super young man who dropped in an envelope of 20p coins he’d saved up for us. There were tons of them and they added up to £20! Massive thanks.
I must also say thanks to Lucy, one of my pupils, who’s been dropping in little envelopes of spare change. It all adds up and we are so grateful. What a star - a big hug to Lucy!
I’m on the radio again tomorrow at 8.50am. I’ll be interviewed on BBC Somerset Sound to promote our comedy night on Monday. I’ll pop an MP3 recording of it onto our Media page tomorrow night. I’m really looking forward to next Monday, it’s going to be a fabulous evening.
Su had another treatment on Tuesday and so far, she’s been dealing with it quite well. There’s been no nausea so far, although she is incredibly tired. While I’m on the subject: it’s been lovely to hear from so many people who’d like to pop in to see her. Trouble is, I’m not entirely sure that a few of you realise quite how bad she is. Some days, she spends all her time in the toilet, constantly throwing up, or troubles with “the other end”.
If she isn’t nauseous or suffering from diarrhoea, there’s the constant fatigue. During the average day, she’s probably awake for around 4 hours out of 24. I see very little of her. I get up in the morning, give her a peck on the cheek and leave her sleeping in bed. When I arrive home, she’s nowhere to be seen. She’s upstairs asleep again. After about an hour of me arriving home, she’ll stagger downstairs, have a cup of tea with me, potter around for an hour and then disappear off to bed again. I realise that there’s a lot of you who’d like to see her, but at the moment, I’d like to see her!
If you did see her, you’d be shocked. She’s half the woman you know and love: she’s frail, weak and thin; her eyes missing their usual sparkle. She’s not well enough for people to just ‘drop in’. In any case, she’ll take one look through the spyhole in the front door and hide upstairs!
She’s slowly improving; she’s virtually cut out the morphine and loads of other drugs. She has far more sparky moments these days, when she’s like her old self, although these generally don’t last long!
Right, that’s it. I’m off to bed. I woke up this morning with a horrific sore throat and I’m starting to feel a bit shivery. A nice snotty cold- just what I need!
Night all xxx
9th May : 00.15
Okay, okay! I didn’t do the update on Sunday night as I had originally hoped, but I was a bit tired after the events of the day!
Well, here’s the good news...
We’ve reached £40000!
This was all thanks to Cross Rifles FC sorting out the remainder of the money raised via our football match, plus some extra cash from the Woolavington Quilling Group. Thank you SO much.
Also, I met a wonderful and brave family on Sunday. The Hale family are still recovering from the terrible loss of Angela Hale, a young mother who was tragically killed in a car accident on January 27th. She was only 23 and was pregnant at the time with her second child. She leaves her partner, Craig, and their little girl Emily.
On April 30th, the family held a charity football tournament at Bridgwater Town’s ground to raise money for the NSPCC (Angela’s favourite charity) and to raise funds to pay for a memorial to Angela. I am so delighted to say that they raised £5000, which was more than the family had hoped for. They then made the incredibly generous decision to give £500 to Su.
On Sunday, at Bridgwater Town’s football ground, Angela’s mother, Lyn, presented me with a cheque and I was truly humbled by the family’s bravery and generosity.
If anyone from the Hale family, or Craig, her partner, reads this website, Su and I would like to say that we cannot begin to understand the loss you have suffered and we thank you unreservedly from the bottom of our hearts for your gift. You and your lovely girl, Angela, will be in our thoughts for a long long time to come.
For Angela, Craig and darling Emily.
Some of you may be thinking- “if you’ve got the £40000, why is the site still here?”
Well, I’d just like to point out...
a) We’re not getting greedy
b) We’re not being ungrateful
c) We’re not trying to get a new car
d) And so on.
It’s just that I had a bit of a shock last Friday.
Each chemo treatment costs £2270. This is given every fortnight for approximately six months (10 or 11 treatments). Then, from the middle of September, Su will receive Avastin only. This lasts for six months (13 or so treatments). This will then cost around £1400 per fortnight. Our £40000 will pay for all of this.
However, what is not included is this cost are the tests, the consultations with the GPs (£120 per monthly appointment, which lasts all of ten minutes), the CT scans, the x-rays etc.
And that was the shock on Friday. The first bill for Su’s x-ray and blood tests arrived. I was stunned to read the amount of £627!
Su is given fortnightly blood tests. She is x-rayed monthly to make sure her PICC line is still in place. She has her first CT scan on the 23rd and I can only guess at what the charge for that will be (the nurse estimated around £1000).
So, although we’ve hit our target of £40000, I’d like to continue until we get £44000. I’ve done a few sums and I think that amount will see us through nicely, as I’m confident I can pay the rest from my wages.
And, no, once we reach £44000 I’m not going to say “oh well, there’s other things we have to pay for too etc.” and set yet another target. When we hit £44000, you won’t see the main page when you log onto this site, you’ll see a huge picture of a champagne bottle and hear some celebratory music blasting out of your computer’s speakers.
What happens to the site after that? Wait and see. I have huge plans and hopes for this site; it’s got over 300 daily visitors and we’re easily found on Google. The world has helped us and I want to give something back. When we hit £44000, you’ll find out exactly what I want to do.
And it’s special- trust me, it’s good.
So why no update on Sunday night? Why so tired on what should have been a euphoric occasion? Sunday was a strange day. Don’t get me wrong; I was over the moon to hit our initial £40000 target. But it was a day of mixed emotions.
The photographer from the Bridgwater Mercury was there to take a photo of Lyn Hale and David Cornish (manager of Cross Rifles FC) presenting me with the cheques and cash. When he took his snap, I didn’t know whether to smile (which might look insensitive considering the tragic origins of the Hale family’s donation) or whether to have a serious look on my face (and then risk looking like a terrifically ungrateful sod). To meet the Hale family was truly humbling and very moving. To be meeting with the people who have helped us so much (Chris, John, Julie, David and Roger) for probably quite a while was poignant.
Also, to have reached the end of a ten week campaign to raise the cash was unbelievable.
I said to Su earlier, it made me think of Ian Botham when he used to do those ‘Lands End to John O’Groats’ walks in the 1980s.
When he set off, he probably thought “how the hell am I going to do this?” When he was a quarter of the way, he would have felt he’d crossed a milestone but there was so much left to do. He would have faced difficulties and setbacks along the way; his feet would have been blistered and it might have become too much to bear but he continued. When the end was in sight he would have burst every blood vessel and torn each of his muscles to get across the finish line.
But then when you finally cross it, how do you feel? You don’t want to cheer or shout. It’s not that kind of feeling.
That’s how I felt on Sunday.
This site has been my life since March 1st. Every hour of my free time has been spent maintaining everything, emailing people, banking money, keeping tabs on our totals, organising fundraisers, meeting people, blagging stuff from local shops, putting flyers on car windscreens and so on. Generally running around like a headless chicken.
I’m not looking for praise or a pat on the back. It’s been a two-way thing. This was for Su but it was also for me too. This is my therapy.
When your partner is unwell, you want to make them better. If your husband, wife, boyfriend or girlfriend wakes up in the middle of the night with a headache - what do you do? You tiptoe downstairs and return with a paracetamol in one hand and a glass of water in the other.
You want to make them better.
With cancer, it ain’t that simple. As Su’s partner, I initially felt so helpless, weak and pathetic. There she was, dying in front of my eyes and I was powerless to halt the ravages of the tumours growing and spreading inside her beautiful frame.
I thought the site might raise £1000 if I was lucky. But once it was obviously going to raise so much more, this site became the outlet for my energies. To be able to talk to all of you (some of you people I know in Bridgwater or further afield, some strangers on the other side of the world, who I will never meet) has been incredibly therapeutic.
Who needs a psychologist when you’ve got 300 shoulders to cry on every day?
So the site continues. We’re £3300 away from our final target with a few fundraisers left to go.
Incidentally, I had a lovely chat with Mitch Benn this evening about his comedy gig next Monday. It’s on, it’s happening, spread the word. This guy is a naturally funny man with a superb act.
It’s an absolute bargain. £5 to see a top London comic that would normally cost £16 in the capital. It’s a deal, it’s a steal! Plus, you’re helping a good cause. I am seriously looking forward to it. It’ll be a great night.
That’s me done. I’ve waffled way too much tonight and, although I began typing at 11pm Monday, it’s now Tuesday morning.
Thank you so much for all your donations and support over the last ten weeks. We’re on the home straight now and I cannot wait to tell you what’s going to happen to this site when we hit our £44000.
Su and I love you all. I love you all especially.
You’re keeping my girl alive.
Night all xxxx
4th May : 23.00
It’s been a superb day for our fund. Thanks to some very generous individuals, our total has been swelled by £1400.
Firstly, at lunchtime today I met with a wonderful lady who has helped us out with a very substantial sum of money. It really did bring a tear to my eye.
We’ve also had some very generous donations via Paypal this evening. A bug hug and thanks to Matthew and Georgina.
A former pupil of mine popped into school today with her mum. Tania did a sponsored swim for us and managed to raise over £220! A massive hug from us both.
This weekend, something very special is happening, but I’ll keep you in suspense until Sunday night on that score!
In the next few days, I’ll be busy getting the ball rolling on some publicity for the under 11s v Mums footy match and our Mitch Benn comedy night. If all goes to plan, there should be something in next week’s Bridgwater Mercury.
Night all xxx
1st May : 16.30
I’ve added loads of bits to the site today.
There’s a new Media section, which contains all of our newspaper cuttings and recordings of interviews.
Also, I’ve added a page of photos from our football match to our Events page. Go the the bottom of the Events section and you’ll find a link. Alternatively, just CLICK HERE.
Plus in the Gallery, I’ve added a few pictures of Su and the family.
Bye xxx
30th April : 14.00
It’s been a week since the last update - sorry for the lack of news.
I’ve spent the last 7 days relaxing after the huge amount of work our football match demanded and it’s been rather nice to be able to concentrate on Su and my job.
I’ve got a huge amount of stuff to put on the site over the next few days - photos from the match, another interview I did for Somerset Sound on Monday, the follow-up articles from the Bridgwater Mercury and Bridgwater Times, plus I’d like to get some new photos of Su on here.
I haven’t got time to do this now, as Su’s had a really rough couple of days and I need to spend my time today looking after her. Hopefully, tomorrow I’ll be able to get everything online.
A huge thank you to Jackie and Alistair (Su’s sister and brother-in-law) who have boosted our fund this weekend with a massive chunk of cash. We’re now very close to hitting our £40000 target and it’s so reassuring to know that when each treatment bill arrives through the letterbox, we’ve got the money to pay for it.
A giant hug to my Auntie Jan and Chris who popped in yesterday to say hello. They brought a birthday present for me; a lovely table and chair set for the garden. I’m looking forward to a nice sunny day when I can get them out, with Su and I sipping a nice bottle of wine together.
We’ve had news of when Su’s first scan will be - 23rd May. This will be a very nervous time for us, as it will be the first time we’ll see what effect the treatment is having. Fingers crossed everyone!
Check the site over the next few days - there’ll be loads of extra bits popping up.
Bye xxx
23rd April : 22.30
Wow, what a day!
Our football match was attended by around 500 people today and we raised £2500!
I haven’t fully counted everything properly yet, so our site total doesn’t include the full amount, but I have added the bulk of today’s proceeds to it. Expect it to leap up by a few hundred quid over the next few days.
When I’ve got more time, I’ll pop a page of photos from the day on the site and give a full rundown.
Here’s a few titbits from the match: Cross Rifles won the first Bridgwater and District Community Shield against Huntspill Crowns. The score was 5-2.
A huge thank you to the following people: John, Julie, Chris and David from Cross Rifles FC, Dudley and Ryan from Huntspill Crowns, Roger from Bridgwater Town, BCR FM, all the wonderful folk from our school who manned the stalls, my mate Dave who made balloon animals, Tina and Jamie for their endless support, Vikki for her hard work on the gate and if I’ve left anyone out, let me know!
The biggest thank you goes to the two teams of players and all you wonderful spectators who came to support our cause.
Night all xx
22nd April : 15.20
A quick update for those of you coming to the match tomorrow. If you’re unsure about where we’ll be, take a look at Bridgwater Town’s own website by clicking HERE. There are excellent directions for those coming into Bridgwater from either the north or south of the town.
I was on two radio stations this morning, talking about our cause and our footy match. I appeared on BBC Somerset Sound at 8am and then on BBC Radio Bristol at 9am. I was given a huge amount of time to plug our cause and fundraisers, so hopefully it should bring a few more people to the match. We were also the top story on the local radio news this morning and one bulletin even featured a rather groggy Su! I’ve managed (with the superb help of Matt, my brother) to get recordings of everything for your listening pleasure. They’re in mp3 format and are in our Media section.
A huge thank you to all the people at the Beeb who were so nice today - Alex the producer, Simon Parkin and Ali Vowles.
A big big big big thank you to the wonderful staff and customers of Somerfield, Bridgwater who have had buckets on their checkouts for the last week or two. They have managed to raise the great total of £240! A superb boost to our fund!
See you all tomorrow!
21st April : 22.15
An ultra-brief update tonight just to let you know that I’m on BBC Somerset Sound and BBC Radio Bristol this Saturday. If you’re a local, then tune in at 8am to hear me on Somerset Sound and at 9am to hear me on Radio Bristol. I’m just doing a quick interview about our fund and how we’re doing. It will hopefully get a few more people to our football match on Sunday! I should be able to put the interviews on this site as mp3 files at some point so you’ll all be able to hear them and judge whether I sound like a prat on the airwaves!
Night all xxx
19th April : 00.30
Good God! It’s not often that you go to the newsagents and see your own ugly mug staring out from the front page of a paper!
Well, that’s where we are - on the front page of the Bridgwater Mercury. Simon, the journalist who wrote the piece, did say he’d try and give us a ‘prominent position’ in the paper - you can’t get more prominent than that, can you?!!
There are scans of the article in our Media section.
You can also view a very brief version of our article by going to the Bridgwater Mercury website by clicking HERE.
It’s done us the world of good already. I’ve had loads of offers of help for Sunday’s match, plus some extra prizes for the raffle and some lovely handmade cards to sell.
“But I thought you didn’t want press involved?” - I hear you cry. Well, we didn’t really, but when there’s a footy match that we want folk to attend, we didn’t really have a choice.
Imagine someone shaking a tin in a shopping centre: “Please help this woman (who I can name), but she’s got cancer and she works at a local school (that I also can’t name) and her partner (who I can’t name) has a website (that I can’t name) to try and raise money for her. Please give generously!”
Nah - I wouldn’t give a penny either.
Unfortunately, to get a bit, you have to give a bit. And that’s exactly what we’ve done.
Su and I have discussed it with the kids and made sure they’re happy with it all. Their response is one of realistic stoicism - if that’s what we need to do to get the cash for Mum to get better, then that’s what we’ll do.
It’s pretty much a case of ‘no holds barred’ now.
I’m going to get on the local radio stations this week and will try my hardest to place my ugly mug on the local telly as well. If our story gets picked up by a national, I’m going to try to convince Su to allow it to happen. I’ve said from the start - if it had been in something like the Daily Mail or The Sun, we’d have reached our target long ago.
Anyhow, if you can’t
