So I didn’t get to use the Hot Tub last night as it was only 33 degrees at 11 pm so we decided to just wait until the morning. Steve is on the early shift so he goes to bed about midnight and I stay up to play my favourite game ‘wack a comment’. I finish this just after 1 am and I’m so tired that I think I can sleep and I have hopes of sleep like the night before of at least 4 hours. So tired I get into bed and the pain of lying on my back is awful, I consider taking oral morphine for release but I lie and try to cope with the pain. I toss and turn but no relief comes however somehow I drift off. I wake at 3.15 am! Omg now I’m upset as my hopes of sleep and rest are shattered and I have had less than 2 hours sleep again. I do my usual routine of coffee, 1/2 biscuit and a fag, no animals in sight and I wonder what to do as I am awake and in pain but I can’t take painkillers through the night unless it’s oral morphine and that affects my bowels and they have stopped working again so I have to wait it out.
I decide that with no project work to do that I will organise my emails and then get on with my to do list from the previous day that I always prepare so that I’m organised. I start with my emails and hit delete until I came across one that I had missed from Gemma, she is from the Ian Rennie charity and she visited me a few weeks ago to discuss publicity. I told her, as I tell everyone that anything I can do to educate people to bring awareness and prevent this happening to anyone else is worth everything to me and that I’d be up to do anything for them.
This is her email:
Sorry I’ve been out of touch. I’ve been keeping up-to-date on your blog and have made a start on your case study. In the meantime, the Bucks Free Press would like to interview you as part of a 30 Years of Care feature on Rennie Grove. They’re speaking to our Chairman about the challenges facing palliative care; to our CEO or Nursing Director about how we plan to meet those challenges; to Marina about her work as a Rennie Grove nurse – and then to you about your experience of our care (if that is OK!)? Marina said she saw you yesterday and mentioned it to you and that you were up for it!
So I really just wanted to fill you in a bit more and to confirm that I’ll pass your phone number onto the reporter, Will Burton.
Also, do you remember we talked briefly about a production company, Chalkboard, I think they were called, who are keen to film patients with a prognosis of 6 to 12 months for a documentary called ‘My Wonderful Life’? You said you’d be happy to chat to them too with a view to filming. Is it still OK to pass your number onto them as well? They would call to talk through the project so you could see if it was something you wanted to do.
Thank you very much and I’ll be back in touch soon with a draft of your case study for you to check 🙂
Wow and wow I thought, how fantastic is this, an opportunity to reach out to people. I reply yes to everything and I’m now really excited as I can use this platform to promote the Calendar too. I quickly send other emails (all will be revealed about the Calendar in tomorrows post, I promise) and I’m so pleased that it’s all coming together.
I stop for a coffee and another fag. I then have another wave of tiredness and reclining all the way back in my dream machine chair a decide to see if I can rest my eyes. The next thing I know is the kitchen is alive with Rebecca and Steve who are trying to not wake me up. Now like the other morning I wake in a confused state ‘what happened’ I say ‘Where am I?’ The sleep I had drifted into was so deep that I am not really conscious and I’m talking rubbish. I ask Rebecca if she has seen Dr Who as we are fighting cancer together, that I was with the Daleks and Peter Capaldi is waiting for me and I’m not even a Dr Who fan! She said that she had seen an Ood. Steve who is only on his first cup of coffee is confused at my confusion of where I am. I continue to be dazed and struggle between dream and reality. What’s happening to me, is it all the drugs I take? Am I going mad? I eventually come back to normal after a coffee and a fag but it just all felt so real and I now feel really stupid.
So I start my drugs off for the day and wait for Steve to become awake before I tell him about my email and how excited I was about it all. This then led to about an hour of my crying and crying and let me explain why.
I started my blog to try to help others, I didn’t think for one moment that anyone would be interested at all, we are now in 3 months over 73,000 hits all over the world. I have been invited to Parliament, we made the Cancer Free video, I’ve produced a book, we are campaigning for equal screening, we have written 50 Shades of chemo and raised way beyond my dreams of £1000 for Beating Bowel Cancer and we are soon to be selling a Calendar with mine and my friends bottoms on it across England and the world. I have cashed in my Pension and brought a Hot Tub and a Daisy Den and I’m trying to adapt our home so that we can cope with me being here until ‘end of days come’. Now to some who read my blog may think ‘flash cow’ or other such things, I don’t know what people think but the cost of all of this is that it’s costing me my life. I never dreamt I’d have money spare to buy a Hot Tub or a Daisy Den. I’m not flash with cash as like everyone else up and down the country you just have to manage with what spare money you have. I can’t believe that my poor mom has visited us for 14 years here and she has never had a wardrobe. Hence my need to spend my last bit of savings on making her happy prior to the Pension money coming through.
So there is a parallel journey here, one of excitement, project work, publicity etc and the pain of the underlying fact that I could not even be here this time next year. Have I just created a world of my things in our house that will just bring sadness when I’m gone? I don’t want to die, I’m not ready to leave my loved ones. I want to live and go back to normal. I want to be able to cuddle my husband, walk down to the shops and I sob and sob to Steve as I don’t want anyone to think that it’s all about me cos it never has been that for me, I just want to stop this happening to any other family. I want to save everyone from the pain of cancer and the endless sadness it brings.
I eventually stop crying and we decide to hit the Hot Tub to cheer me up. As soon as I’m in the water it’s instant relief. No pain, weightless and free. There is no drug in any of my cupboards that can give me that. Steve joins me and for the first time in weeks, months I can lie with him, him holding me without hurting me at all. We had 20 minutes of pure joy, fun and laughter playing with the controls etc and just being us, a normal happy couple in love and picking daisies.
Now we have prepared a little video for you all to enjoy of the Hot tub arrival and my first steps into her. Which reminds me that you all need to help me again as she needs a name, so thinking caps on you lovely lot.
I hope that you enjoyed the video and tomorrows post will be the long awaited massive reveal on the ‘Bustin Bums Calendar’. Who’s in it and all the info needed to get your hands on one.