Over the course of the evening the loss of being able to use my right leg eased a little and I was hobbling better. Curfew time was replaced by Steve and I having a bath as I thought it might help with the back and leg pain. If you remember a few posts ago I talked about Steve having a flare up of excema so once in the bath his skin looks normal albeit red due to the ecema rash but my legs look yellow. Steve assures me I’m not turning yellow, oh good that’s okay then but he his colour blind so that’s really no comfort at all. I selected Boots No7 body bath wash, a gift from my ex ex boss Julie and realise that as we have been having baths lately Steve’s skin has been exposed to different products, could this be the cause of the excema? Then I remembered that one week Richard did the shopping and he brought the wrong fabric softener and I told mom not to use it but it did get put in the cupboard. Turns out Rebecca, who hadn’t been told about not using the fabric softener has been using it.
Now it’s great that we now know why Steve has been suffering but it does mean that every single item of clothing of his has to be re washed as he reacts so badly to any bio product. Poor Rebecca as she didn’t know.
Crisis sorted and bath over we sit and chat in the kitchen but now the tumours in my neck have started to really hurt. Just a few hours ago I had told Emma how they had gone down and now they are swollen again and aching. So I am sat with my head to the right, my back is aching badly and my right leg is still sore too. Steve is ready for his bed, he tries to hug me and tells me he loves me and the tears just fall slightly as he holds me gently, I just get so sick of the constant pain and it seems as soon as one part of my body stops hurting another one starts apart from tonight where all tumour sites are having a party but I’m the one with the hang over!
Steve goes to bed as I tell him I’m fine and that I’ll take my last painkillers of the day and then I’ll come to bed. So at midnight I take my last 2 paracetamol for the day. At 1 am I take 2 of the Amtripline tablets and at 1.30 am I decide I have to try to sleep. Marina gave me some good advice the other day on her visit which was to take a syringe of oral morphine up to bed with me and then if I wake up in pain I can just lean over and take it which will hopefully let me sleep again. Knowing the pain that I’m in I do this and head off to bed with oral morphine and my pink hot water bottle.
I try to sleep I really do but the pain will not go away, it’s so hard to even describe the pain. It’s just this constant deep ache that I can’t escape from. At 2.45 I reach over and take the oral morphine and wait for the release from the pain, now I only take 2.5ml but sometimes it’s just enough to take the edge off and so I hope for sleep. at 3 am I can’t stand the pain anymore and I go downstairs to take the other half of my allowed 5ml in any 4 hours. So it’s 3.30 am I have enough drugs to kill a small animal and the pain still rages. I know that I need help and tomorrow I’m going to call Marina again as the drugs are just not working.
So I’m sat alone with another 3 hours before I can take anymore pain killers, the pain is not easing and I dread the next 3 hours dealing with pain alone. I then remembered my gift from Mary Poppins, the TENS machine. It’s worth a shot I thought. So I grab the box and the contents of pads and wires fall out. Now I’m not good with electrical stuff and I never read a manual, so I’m not even confident that I can operate the thing but hey I’ve got nothing left to help me so I have a go. Firstly it doesn’t come with batteries so that’s a 10 minute quest to find some. There are 4 pads and it looks simple enough so I try to attached the pads to my skin, they go everywhere apart from on my body, they stick to my dressing gown, my hands and my new Pjams from Lorraine and then eventually they stick to my back and hip. Right hand side done I turn on the machine at level 3, the recommended setting for back pain. I attached the other two pads after with the same trauma as the right hand side and off we go. But the right hand side is the only side that will work so I leave it for the 30 minute setting and then go through the trauma again of moving the pads to the left hand side of my back and sit for the next 30 minute cycle. The pulsating electric current helps takes my mind off the background aching of back, hips and legs. So thank you Mary Poppins I’m now covered in sticky stuff and there is a buzzing electric pulsating sensation helping my back pain. The manufactures have missed a trick, they should have a third outlet from the device as a vibrator cos that’s what all the buzzing and pulsating is making me think of.
At 4 am I set up a bed in the chemo gazebo and I lie with the TENS machine buzzing away, it’s okay but I’m still in pain. By 5 am I have had enough and take another dose of morphine, now I know I have taken this an hour too early but I just need a release from the constant pain. This works and I finally sleep until 7.30 am. Wow 2 hrs sleep, 2 hours of no pain, 2 hours escaped but now I’m awake again and the pain continues.
At 9 am I call the Ian Reenie help line to get a message to Marina. She returns my call within 10 minutes. She says that she had been thinking about me. I really do feel cared for by them, genuine care and support. We discuss my pain and I am going onto slow release morphine tablets to take throughout the day. On top of the other drugs still but to turn down the ibofphen to 600mg tablets. Marina doesn’t know but tears roll as I speak to her, it’s just such a relief to have her and the team on my side.
10.30 and Gemma arrives from Ian Reenie, she isn’t a nurse but wants to use me as a case study for the website and for press releases. We go through my journey, the blog, the book, my video’s and she also meets Molly and Tia the ungrateful rescued cat. I have told her that she can use and abuse any of me at anytime as I just want to raise awareness and help people, if that means press coverage then so be it. I’ve shared my naked bum, my abuse stories, my grief and shitting myself with the world already so I really don’t care anymore I just want to help others. I want equal screening in England, I want doctors to stop telling people they are too young for cancer, I want to stop people dying unnecessarily and I want to spare any other family the worry and upset that cancer brings to their loved ones. Not alot to ask for is it but at the moment it seems like it is.
Steve has been out to do the weekly food shopping before he starts work and with Gemma gone we have a quick bite to eat before this afternoons entertainment of blood tests and a meeting with Dr Weaver my oncologist.
After bloods taken ahead of chemo cycle 2 on Monday and our appointment we have spent the last 3 hours at the hospital. So I’ll fill you in tomorrow with all details as it’s now 7 pm and I know you will all be wondering where today’s post is. Enjoy your Friday evening everyone whatever you are up to, go pick some daisies xx