Thursday, 13 April 2017

I need a hero.

I feel so lost. Mike is still waiting for a bed, it seems Dr. S.B's urgency messages didn't get through to the powers that be at the QE. They are not in a rush. Mike has had enough. He is ready to tell them to forget all about the SCT. This morning he said he has gotten to the point of letting nature take its course. I don't know what I am supposed to say to him. If I "support" his decision I will be accused of being heartless at some point. If I disagree, then I am unsympathetic  as I don't know what his life is like. 

All this after weeks and months of optimism. When Mike has recovered from his SCT there is a slim chance of a kidney transplant. Mike was already making plans about what he would be able to do to get back to work. Lots of wonderful plans, none of which really involved me. Little old me would have to find her own way. Sitting at home looking after him whilst running a small eBay business would become me running a small eBay business alone. I should jump at the chance, but I know I would go crazy all alone day after day. 

I wish I had once known what I wanted to be when I grew up. I never had a clue, never had a vocation or a plan. Others knew and still know what they want from life. I just stumbled along. The jobs I have done in the past have always been to the best of my ability, but they were never professional in nature. No-one is knocking my door down saying please come and work for us. The obvious direction would of course be care work, but I have to question whether I really have the patience for it. Mike often "complains" about the way I do things and I get upset. Hardly the right way to be with a patient. 

No I need a hero. Someone to take me by the hand and lead me in the right direction. I need a miracle.

Wednesday, 22 March 2017

Time for a change

As you will all know already, this past year I have been miserable, really miserable. Mike has had enough. We argue constantly. "Misery likes company." 

So I have taken down my last two "negative" blog entries and I am now going to make an effort to only blog "positively" or at least more chirpily. I might still be miserable, but I won't be dragging you all down with me. 

We had an appointment about Mike's next holiday yesterday (SCT) and we have been given a date of April 4th. The transplant coordinator seems quite positive about the likelihood that there will be a bed, especially as Mike needs things to happen quite quickly as he couldn't tolerate the Revlimid.  

So it looks like April could be a busy month, seeds to sow and stem cells to grow. Stem cells and tomatoes. 

Saturday, 11 March 2017

Where to begin?

Where to begin?

The last few weeks have been awful. We just weren't prepared for the way Revlimid (lenalidomide) would affect Mike. Lots of other people we had read about seemed to still have a life, off on holidays going out and about, we assumed Mike would feel the same way he had on Velcade. We were so wrong. The first week of RCD seemed to go okay, then Mike developed a rash, the prophylactic antibiotic was blamed and stopped. The 5 mg daily dose of Revlimid was continued. The rash went and Mike developed a cough, not a chest infection, just a really annoying cough. By the end of the first cycle Mike's blood counts had plummeted. So much so, that it was agreed that the second cycle of RCD should be 5 mg every other day. Mike only managed a week. His Hb dropped to 71 (7.1) and his platelets at 54 meant that it took us 55 minutes to stop his dialysis site from bleeding, times that by two needles and you have a very long day. Eventually on Thursday they gave him two units of blood.

Mike still has the cough that plagues our sleep, still can't climb the stairs. My emotions are a complete mess. I go from angry that I have had to do everything around the house for eight weeks, then guilty because well Mike is ill, back to angry that he offers to help friends and family when he can't so much as lift a cup to help me, then selfish when I find myself wishing they would just take him into hospital for his SCT so I can get a break. 

I am fed-up of reading about other couples who have a "perfect" relationship despite illness, am I the only one who is sick of being nothing more than a carer, a slave, chief cook and bottle washer?  I miss being a lover, a friend, the other half of a couple who do things together. 

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...........