Sunday, 22 January 2017

Child's Play.

I have never liked horror movies. In my younger years I was pressurised into watching a few by my peers and boyfriend. Carrie, The Omen, Rosemary's Baby, The Fog to name just a few. They would leave me with nightmares for weeks. I know the social references that come from many of the  movies, but I haven't seen the films and I don't want to. I have never watched a horror movie with Mike, I do know that his point of view is very different to mine, to him they are entertaining almost comical as they "aren't real". Our difference of opinion has been the cause of several heated "discussions" as he doesn't understand why I would watch fantasy / science-fiction but not horror "it's all make believe and not real." He misses the point, I wouldn't mind if Star Trek or Star Wars were real, I certainly don't want Chucky chasing me!

Being a carer is sometime like being locked in a room with a horror movie. All I can do is sit and watch as Mike suffers. I can't stop him having unpleasant side effects to his medications or even make it better. How can I stop him suffering haematuria? What more can I do to relieve the terrible itching that has him drawing blood? How do I stop myself from feeling helpless? 

Some days I just wish I could have a different film to watch. 

Tuesday, 17 January 2017

Residual Current Devices save lives.

"An RCD, or residual current device, is a life-saving device which is designed to prevent you from getting a fatal electric shock if you touch something live, such as a bare wire. It can also provide some protection against electrical fires."

I've always thought the blog should be educational among other things, and today's post is hopefully that.

We went off to see Dr SB yesterday afternoon, an emergency appointment arranged on Friday. As we walked in his face paled (well I think it did) and the first words out of his mouth were "what's wrong with you?" They weren't directed at Mike but at me, dear SB obviously thought I was ill (got cancer) too. He was visibly relieved when I told him I had shaved my head for Myeloma UK. 

The consultation seemed to go on for ages and by the end of it Mike had a prescription for RCD, Revlimid, Cyclophosphamide and Dexamethasone. along with the usual antifungal, antiviral and antibiotic, blood thinner and stomach protector. 

This morning's tablets.
Dr SB didn't say whether it was going to be one or two cycles, we're guessing two as they are hoping that Mike will be ready for his SCT in April (I'm not holding my breath though.) 

So today's lesson is: 

RCDs save lives, whether by protecting from electric shock or by destroying nasty myeloma cells. 

Friday, 13 January 2017

Houston, we have a problem.

Houston, we have a problem. 
  • SB unavailable yesterday. 
  • SL covering clinic. 
  • Paraprotein level from Dec 2016 appears to show insufficient reduction. 
  • PM SCT expert unavailable until next week. 
  • SL liasing with SB as to what to do. 
In other words SCT is currently cancelled until further notice (we have twisted arms and got an appointment with SB on Monday). Mike might have to have further treatment / bleaching (Mike's phrase).  I'll keep you all posted.

A very lonely and cold lollipop. 😔 


Wednesday, 11 January 2017

The lonely lollipop.

Mike says I look like a lollipop. Having called the hospital to find out there is no bed for him, it turns out I'm a lonely lollipop. We had this situation six years ago, back then it took more than three weeks to get a bed. The good news is we get to see Dr SB tomorrow, no reason to waste a perfectly good appointment made back in December (he did say make one just in case....... should we worry?) 🙈🙉🙊

Regular updates will continue........... 


Tuesday, 10 January 2017

Hair goes - 0

Or should that be hair gone?




The deed is done, my Justgiving page remains open  (when Justgiving works that is. 😡 )

Now where is my lollipop. 

Monday, 9 January 2017

Hair goes - 1

Only one day left. At 11 a.m. tomorrow it will all be gone. Do I feel anxious? Of course I do. My anxiety is less about actually being bald and is more about people's reactions. Will I offend people who have no choice? Is my act of solidarity like being hit in the face with a wet fish? So far no-one who has been there has made any comment, either via FB or here, so I will carry on.

 My second anxiety comes from my own low self-esteem, will I fail the popularity contest that is fundraising? I would like to reach Mike's total from his abseil, I would have liked to have beaten it 😛. Some people seem to manage to raise hundreds of pounds just from having a coffee morning. It's all about popularity. 

Still I have done my best and at the end of the day we are all singing from the same hymn sheet. I will carry on pestering people for a while once the deed is done in the hope of getting a bit closer to Mike's total. 

A reminder of why I am doing this.
Mike 6 years ago.

Sunday, 8 January 2017

Hair goes - 2

Today we celebrate my youngest son's birthday. If I tell you his nick-name was Tig (short for Tigger) you will understand it when I say that I was lucky to have any hair at all, as a toddler he had me pulling it out! Tig had a mind of his own and seemed to be permanently getting himself into scrapes. 

I know, he looks like butter wouldn't melt!

Happy 26th Birthday Tig.