So with the days post done and posted up. The normal routine of the household continues here. Rebecca has returned to her evening Maths class, so she eats early and goes there for 7 pm. Steve takes her and whilst he is out I start the dinner. We have planned spag bol, my least favourite meal but as we plan the meals for the week in advance I always think that they should have what they want whilst I can’t normally taste anything by now. That side effect is kicking in slowly, blurh.
Steve returns and I just can’t face eating it so I settle for a salad and anti sickness pills. Plus another laxative drink as I am determined not to have to go through an enema tomorrow. Can you imagine the embarrassment? The house will be full of builders, Steve and mom downstairs knowing that the nurse will be inserting a bomb up my bum and just waiting for the explosion. Now just yesterday I took 4 lots of laxatives and nothing happened. The maximum dose is 8 which is for a complete blockage of the bowel. I’m up to number 5 by now and still nothing, not even a stomach rumble or wind. Steve picks up Rebecca for me at 9 pm as I dare not travel far from our loo just in case. Number 6 is taken and still nothing.
Now curfew time tonight I decided that instead of having fun we just spend 1/2 hour freeing up the plastic storage boxes out of the loft throwing some of our real junk away that we have stored for years. These boxes will then be used to take the three man drawers of tools out of my kitchen into the garage so then I can take control of my kitchen again. When I went to the hospice and they advised me to come up with a wish list, the only things I wanted to do were to sort out the garage and the loft. I don’t want to swim with a dolphin or climb Mount Everest but I do want to sort out these two areas as if ever Steve wanted to sell the house after I have gone he just would never be able to face doing it. I have to prepare this house for him and Rebecca and although my suggestion was greeted with no enthusiasm at all, I stuck to my guns and 5 boxes of rubbish from the loft were cleared and I have cleared out the man drawers Girl power hey!
As the evening draws to a close Steve prepares laxative drink number 7 but I went for a wee first and Hallelujah I didn’t have to drink the now prepared drink, things were starting to move at last and the relief of that was amazing. It was one of those moments when you want to shout out loud to announce it, hire a professional Town Crier to ding a bell outside your house to say ‘oh yea oh yea oh yea Wendy’s bowels have moved after 6 long days’ whilst I dance up and down the street waving my knickers in the air. I hope this illustrates how happy I am.
So today is going to be consumed with the hospital. Last night we were called to say there was an MRI scan cancellation and would we be able to take the appointment, the answer of course was yes. Frankie is in for chemo so I want to see her and the bum bag of drugs connected via my PICC line has to be removed today too so I get them all planned in together.
This mornings usual routine didn’t go as planned as no Tia (the ungrateful rescued cat in sight) Molly didn’t even come to say hello is it was so early. Coffee was normal but the 1/2 a biscuit was replaced by a full biscuit which also came from Jane in the Isle of Wight, very nice it was too and much like a Penguin chocolate bar, very chocolatey, thanks Jane. Tia eventually turned up and after she had eaten she came for some love which is unlike her so we had a selfie taken together for you all to prove that she loves me really.
I don’t have an appointment for the results of the MRI scan but Steve and I have enough experience now to know that if there are any problems whatsoever they call you up. I have never had an MRI scan before but I know that people don’t like them due to the small tube you go into and the loud noise the machine makes. I ask Steve to check if I have to have nil by mouth before hand or drink my own body weight in water as you have to do this for CT scan but with an MRI scan apparently not, so happy days. The procedure can take up to 90 minutes which involves you lying still. Now last week this would not have been even possible due to the acute pain when I lie down but I’m confident that with the new drugs I will be fine.
Talking of drugs I thought you may or may not like to know the drugs that I now take just to function. These confuse me and I’m always checking with Steve which ones I should be taking when. I blame chemo head. so they all have to be written down in a book so that I have a complete record every day.
- 1st thing – 1x Lansoprazole – tummy protector for the drugs to come throughout the day
- 7 am – Zomorph – slow release morphine,which slows your bowels down
- 8 am – Gabapentin – the nerve pain killer, which slows your bowels down
- with breakfast – 2 x Dexamethazone – anti sickness pills following chemo which mess up your sleep pattern, which slows your bowels down
- with lunch – 2 x Dexamethazone, more anti sickness pills following chemo that mess up your sleep pattern, which slows your bowels down
- 4 pm – Gabapentin – the nerve pain killer which slows your bowels down
- 7 pm – Zormorph – slow release morphine, which slows your bowels down
- midnight – 1 x Gabapentin – the nerve pain killer which slows your bowels down
So you can clearly see why my poor bowels stopped for 6 days. I will have to take laxatives on top of the list above everyday until we find the right daily amount as I have learnt now not too leave it so long before I confess to my problems but I, like many, don’t like talking about poo.
Mom comes with me for the MRI scan, all jewellery removed but at least I don’t have to wear a gown of shame. The choice of music for me to distract from the noise of the machine is Jazz or Motown, now Steve will be impressed as I don’t like Motown but it’s that above Jazz any day. You have to lie still on a hard bed that fits into the the machine, they can talk to you and there is a panic style button if you need to talk to them. The important thing about this scan is that you have to be still. There isn’t much room in the tunnel at all but with your eyes shut it doesn’t matter. My problem is lying flat and still. As the time goes on the pain starts in my back and leg. I struggle to hold the position as the pain just keeps coming and ‘The Tears of a Clown’ is just not helping either. The weird loud noises vary from loud bangs to machine gun fire. They count you down, 8 minutes, 5 minutes and then 3 minutes, how long 3 minutes can seem hey. Finally I’m out and free but it’s set off the pain and now I’m back to being bent double and walking strangely again.
I miss Frankie on the Sunrise ward by about an hour but we will eventually meet up as her treatment is every 3 weeks and mine every 2 weeks.
As DFS is only 1/2 a miles drive mom and I still go as I just want to see the reclining chairs and to try them. Now my mom can’t resist a bargain and they have one and it’s just perfect but I don’t have the money. Mom insists on buying it for me as she knows what little sleep I get and if I can’t be outside in my chemo gazebo then I do struggle to get comfortable on the sofa in the kitchen. I’ll pay her back but it’s coming today and it means so much to me, thanks bank of mom, you are a star.
We return home and the progress of Daisy Den’s platform is coming along nicely with good weather ahead of us it should dry quickly too. Now we just need delivery of Daisy Den to be nearer to 4 weeks than 6.
Massive thanks to everyone who has decided to change their planned fund raising this week to Beating Bowel Cancer. Send me your photos and I will put them in the blog. Thanks to Leanne again from Beating Bowel Cancer who has organised a full fund raising pack to be delivered to my beloved team at BHS Kingston tomorrow for them to make the day a success, Karen you will have everything you need so go girl and the team as I know you will make me proud. The challenge is to beat High Wycombe’s leading total of £153, I know you can do it, I have every faith. Now there’s a challenge too for you Mr Grumpy Bum and the BHS team at Uxbridge lol
Now I know us girls can be emotional and we are better sometimes at expressing our feelings but yesterday I received a text from Mr Vines who is on holiday. Now he could be on the beach, getting drunk, sight seeing or whatever he normally gets up to on holiday but instead he goes to a church to light a candle for me as he is following Rita’s footsteps. He isn’t a religious man by his own admission but I was just so touched that he did this for me whilst on holiday. Thank you Mr Vines, it’s appreciated so much as is all the daily love and support that I get from you all. It really does help me every day, thank you.
And finally a massive Happy Birthday to our niece Cerys, I hope you have had a lovely day and we all send our love to you xxxxx