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