But before we get onto Friday a quick catch up on yesterday. After my emotional day and as Steve was on the early shift we decided a short trip out was a good idea. On the M40 near Uxbridge there is a park called Northala Fields. It has 3 mounds of earth that create false hills, these were made out of the rubble from Wembley Stadium when it was rebuilt. In front of the mounds they have laid a lovely natural park with small lakes and lovely woodland walks. Now the best thing about this area is that it is super disabled friendly. Unlike parks in Wycombe you can walk around it and Steve can push me in the wheelchair. Molly dog is just so happy to be out and having a good run. The sun was still out and it was a pleasant evening. There is even a cafe bar there with the all important toilets just in case. I think that this park may be visited more often by us as I miss not walking the Molly but local areas are just not as disabled friendly. I’m beginning to appreciate the wheelchair now and see why Steve bought it, our walk would not have been possible without it and it gives us choices but there is something so wrong for me being pushed around by Steve. I was once fit, healthy, full of too much energy and a zest for life being pushed because I can’t walk far 🙁 but I’m not going to dwell on negatives as that’s being a victim and that’s not me, so ahead of conference next week I’m going to ‘pimp my chair’ with stickers, embrace the freedom it can give me and learn to love to be pushed around.
We return home but it’s about 7.30 ish and once tea is done and I’ve caught up on some comments on Facebook and the blog before I know it its 10 pm and I am so tired as I haven’t slept at all, just cried through the day really. Steve says to sleep and I agree to just 1/2 an hour. 11.30 I wake up. Now that’s the new downside to the new chair, it’s just so comfy that I can sleep too well in it. Steve stays up with me until 1 am as I know won’t sleep and then he goes to bed. I decide to sleep in my chair tonight and I drift on and off and at 6 am I’m up as usual with Tia cuddled in with me, she can forget taking over my chair the ungrateful thing. Now chair needs a name too I think, any suggestions? I’ll leave that one up to you as I know you lot are good at this game now 🙂
When I logged online at about 1 am I received emails to say that there had been donations via the Justgiving site so this excites me. A massive thank you to to Graham and Karen Staves, Lorraine and Steve, an anonymous donation of a massive £60 and finally a special mention to Sapria and her sister who knows Teresa. Now every year they donate £50 to ‘The Masden’ in memory of their mom but this year they have decided to give it to Beating Bowel Cancer to support me. What a lovely thing to do, I’ve never met any of these people and yet there kindness means so much. All this makes the grand total as of Thursday night a heart warming wonderful £3033. I never dreamt that you lot would be so supportive, thank you is just never enough sometimes for me but it comes from the heart from me to you all.
Friday – So I am awake, it’s Friday and it’s also pay day, nothing quite beats the feeling of pay day hey! A day when just for a few hours before the bank/creditors/household bills and direct debits get hold of it all it just feels so good. I always think there is way to much month at the end of my money and October is a 5 week month too, now that’s a long month 🙁 but it’s still pay day. How did it get to nearly October, where have the months gone too? Rebecca had a friend come to visit yesterday, Sammy and she gets married next year, Rebecca is the maid of honour and is very excited, as I am for her. Steve makes the comment as we all do in these moments that the time will soon roll round to the following August when all the planning comes together for their special day. I quietly think, will I still be here? What physical state will I be in if I am? I don’t say anything but after the doctors visit and nobody in the medical profession even remotely saying anything to the contrary about my prognosis stopping or changing time is something I treasure so much now.
Confession time – whilst at the doctors yesterday I was praising the Ian Rennie nurses that she had arranged to deal with my palliative care, who are just wonderful. I asked about my Macmillan referrals and that I had never heard from them. The doctor looked at my notes and a referral letter was sent incorrectly and she couldn’t see any other referrals but did say that the Oncologist team would have referred me. Now I feel bad as I have been a little down on Macmillan and what I thought was their lack of concern. The phone call I made to them doesn’t count as you cann’t refer yourself to them. When I talked this through with Steve he compares it to how Beating Bowel Cancer dealt with me. I phoned them to just say hello and that I wanted to help and get involved, they didn’t ask me to jump through hoops for help, they didn’t ask for proof of cancer they just accepted me and offered a nurse to talk to me straight away. This was the day that I found out I was stage 4 as no one else had the balls to tell me. Steve and I relive that day and it’s trauma but isn’t that how a charity or an organisation should be run, from a point of caring and support first, not do you fit the correct criteria for help and have you been referred correctly?
Fund Raising – Okay so as you have all been busy raising money for Beating Bowel Cancer I wanted to share some photos and fun that has been going on today. Now sadly Kingston BHS gets more coverage as I just love my team and I’m sure you will understand that.
But before that Ian Judd devoted part of the Macmilllan coffee morning to Beating Bowel Cancer and raised £100, thanks Gatwick Airport Team. Teresa Judd has declared a total of £300 raised yesterday and photos are on yesterday’s post. A fantastic effort, thank you.
Kingston raised £240.46 and here are their photos of their day and the fun they had. So Teresa is winning so far but it’s my turn tomorrow so lets see what I can do with friends from High Wycombe, Leanne from Beating Bowel Cancer, Steve, Rebecca, Ian Rennie, BFF and Sex Kitten to help I’m hoping to be the winning team 😉 but the total will be revealed tomorrow. Whatever we raise over the last few days £640 has been raised and I am so grateful, thank you all as I really appreciate all you have done.
So I am really looking forward to tomorrow and seeing everyone who comes to support us.
Privately I am still feeling strange about the next 12 months and what they may hold. Behind the scenes of the blog friends suffering who share their medical and personal fears with me and I worry so much about them. I can’t write about it on the blog as it’s not right but they are always in my thoughts and I am glad that people share their personal pain with me. If I can help anyone I will even if it is just a friendly ear. I also privately get so much support and love everyday that is also hidden from the blog but I wanted to just say how much I appreciate you all. We all have our demons, fears and pain but we are never alone in it.
Final thanks to Tammy who sent me some wall art for my Daisy Den when it arrives and to Steve who has ordered me a thing to go over my PICC line so that I can shower and swim next week, thank you my Mr Wonderful xxx
I’ve always wondered about those hills at Uxbridge, now I know! Now I can give you a few pointers on wheelchair walks when I get back but The Rye is good as you can get all through the wooded side on the cycle track. There’s a good one at Marsden by the canal and Burnham Beeches are good. I’ll get my thinking cap on.
Poor old MacMillan , lol! Well you ended up the winner with Isin Rennie as they’re better and local. Still I might put the odd penny in the McMillan pot again when it’s around! The odd Lund in IR and the odd tenner in BBC Her, BBC , lol, never thought of that. Bet they’re cross someone else beat them to bbc.co.uk. Xxxxxxxx
Excellent if you know more local areas that are wheelchair friendly we can talk about them when we meet for coffee and cake 🙂 Your right I’m better off with Ian Rennie, fantastic people 🙂 hope holiday is still going well xx
Congratulations to everyone involved in the fundraising and wish you the very best for tomorrow in High Wycombe town centre..I’ll be thinking of you all xxx
Name for chair…Daisy Kline
Love to all xxxx
Thanks for your good wishes and the nomination, love it. I’ll let you know how we get on and photos will be on the blog tomorrow xxx
Nice one, you went for a wee saunter 🙂 Molly Moo must have been barking happy, and you where out and about which is good for the soul xxx
I’m loving the idea of you pimping your wheelchair 🙂
Maybe you could do some wheelies too lol love it xxx
Have you heard of the chairs called Lazy Boy?????
Mark said call it the lazy Wendy lol
Good luck for tomorrow my lovely, I hope you have a wonderful day X I think what you are doing is unbelievably amazing.
you are so selfless honey, I’m so so proud of you and admire you xxx
Loved all the pics, you have great friends & colleagues proving their friendship and respect for you darlin I know you feel blessed and they are all doing you proud xxx
Well my lovely I think it should be the Dream Machine because it’s where your getting your zzzzzzz’s
Love & Hugs & Slobbery Kisses xxxxxxx
Sleep well tonight xxx
Molly Moo is always happy chasing a ball, any ball or park will do, bless her. You can help pimp the chair and wheelies would be fun too :-). I’m sold on the ‘dream machine’ name it is perfect and has the motorbike connection too, just love it, so your the winner of that one my angel 🙂 love and hugs to you xxx
One of the things I really love about you is that you make everything so endearing. You have such a great way with words that even though we have never met I feel a great warmth for you and somehow you’ve made me feel affection for a £20 gazebo and a shed godamnit! So I just love Pimp My Chair!
Oh Wendy that Macmillan thing just goes from bad to worse. A referral is a basic admin task. Why on earth they cannot get that right is beyond me and the impact of not doing it right – or at all – is unnecessary pain and suffering. No one takes responsibility. When the communication between departments fail – which it frequently does – all you get is a “coulda woulda shoulda”. You make a great comparison between how BBC’s support kicks in and Macmillan. Macmillian is an incredibly powerful fundraising machine but if the money the public are donating and leaving as legacies in their wills isn’t reaching the people who need it… it makes me question the ethics of taking the money in the first place. They made enough money to give every man, woman and child in the UK £3 million pounds each last year alone – and still have some to spare! That is an eye watering amount of money. Not only did any of it fail to reach someone as deserving as you, it caused you unecessary distress. I feel so passionate about it that I am going to write to them. I am not sure you want them in your life any more but if they review their referral process and it helps someone else then that’s a good thing. GGGGrrr rant over.
The other good thing to come out of it is that fundraising that Mamillan would normally have been given is being diverted to BBC who do a wonderful job at wrapping everyone who comes into contact with them in a big cosy blanket.
Wishing you lots of success and sunshine tomorrow.
Name the chair……. La-Z-Daisy! xxxx
Hi Lizzie,
Thank you for your lovely message. I have never written anything in my life. Since school the only thing I have written has been work reports other than the odd post card, nothing. I write just straight from the heart, the only way I know how. I just sit and it all comes out ‘warts and all’ I like that you love my £20 gazebo and my soon to be Daisy Shed. Chemo gazebo is not looking too good at the moment and the tip is calling her but she has been well loved and appreciated.
Macmillan has just been a disaster but as I said to my mom tonight on the phone, sometimes life takes you down a path and you don’t know why but it was the best path for you to take and that’s what’s happened here, It was a long road but I found that I needed 🙂 It’s shocking how much public mone is raised to support them and their nurses are all paid for by central government anyway. Where does there money go to I wonder?
BBC are so grateful for the donations and they even called me today. Such lovely people, just special.
Thanks for your good wishes for tomorrow and all the gossip will be on the blog tomorrow with photos of course 🙂 thanks again for your lovely message xxx
Well done with all the fund raising and good luck for Saturday xxxx
Thank you so much, I’ll let you know the total on the blog and there will be lots of photos too :-))) xx
Wow. Loads of money raised already and I’m sure you will whip up a storm tomorrow to get people to part with their money wen. I know the year is uncertain but just live a day at a time mate. What’s the saying. Live everyday like it’s your last because one day it will be!!! Oops!!! about Macmillan but as you say it’s hard enough in your situation without having to jump through hoops. Loads of love mate!! X
Glad to hear you were out and about with Steve and Molly enjoying the fresh air! I’ve been threatening to visit the mounds since my first day in Uxbridge, used to drive past them everyday and have yet still to visit. At least you have enlightened me on what is there LOL!
Was going to wish you well for tomorrow,but realise that tomorrow has been and gone so I will now read about your bake sale exploits….
Lots love xx
Hi Ruth, Give them a visit the park surrounding them is lovely, lots for the kids to do the climbing frames etc plus that important cafe. It’s peaceful there too considering it’so close the the M40. All the details of today’s fund raising will be on tomorrows post for you xx